I'm realizing that there are many more people taking Dr. Costantini's Thiamine Protocol or a variation of it on this forum, than is readily apparent. It seems that there are some "quiet thiamine users" who only mention it once in a great while if at all and then their posts are lost in all of the other information that flows through this forum each day. I was thinking it would be useful to have one page or post where PWPs using thiamine could briefly explain their experience with it. A reference page where people who are interested in possibly trying thiamine can get a good idea of realistic expectations with this protocol. You also can comeback at any time and "Reply" to your post if needed in order to update on any notable changes that occur while using thiamine thereby keeping your report current. By doing it this way, everyone who is following the thread will automatically be notified whenever you do an update "Reply" and all of your information will be grouped together in proper chronological order making it easy for everyone to follow your results with thiamine! Having that information organized in one place could be very helpful for all concerned!
The page would need to stay on topic in order to minimize non-thiamine input. Just a brief description of benefit or lack of benefit is all that is needed.
If anyone is agreeable with this idea, please post your summary of thiamine usage and please include a time reference of when you started, how long you have taken thiamine and what dosage schedule you are using along with any information you feel is pertinent.
Remember, if you select "Follow post" below, you will automatically be notified when a new post is added or updated to this thread!
If you select to also "follow me" you will be notified any time I add to the several related thiamine posts that I have started.
If you click on my round icon picture of what looks like it might be a chipmunk (?) you will be able to easily find all of the thiamine / B-1 related posts that I have put up. I only have 14 posts so it will be easy to select from the list and is the quickest way I know of to find these posts related to B-1 .
Thank You!
Art
{Edited by admin to remove personal email address}
Hi Roy finding it hard to find my way around this sight hope this gets to you and others who may be interested
I started on Thiamine 3 weeks ago at 2g worked up to 4g initial results no constipation no change in other ways after a week started to experience tremors (don't suffer them normally) also I was feeling yuk and seemed to experience more off times I reduced Thiamine down to 3 g that didn't help so currently on2 g and have had much better days also notice an improvement in my sense of smell so something is working any Australians who want to try Thiamine it's available in 500mg tablets from iherb on line they will ship to Aus I paid $18 aud for bottle of 100 Tabs are a bit big you might need too take with yogurt or custard when you swallow make sure you head is down with chin towards chest it's much easier to swallow like that you have more muscle power my Physio s advice it works
Was diagnosed Jan 2017 as extremely mild. Have been active cyclist for 30 years with walking and gym. Had op in December kept me down for a few months so just started exercising again. Taking only rasagiline since diagnosed. Tremors increased substantially last 2 -3 months. So Started taking 3000mg B1 per day started May 1 per Doc C. Will provide update June 1. Possible benefit - sleeping through night but really to early to tell.
5/10 (Thursday) - Please note: I am tremor dominant. Outside of some occasional anxiety and sleep issues ( which may be caused by PD and maybe not,) I don't really suffer from other issues I am aware of, other than weakness/coordination in right arm/hand. I still have sense of smell and balance is relatively good.
Tremors increased considerably over past few days. Doc C advised to stop taking Thiamine until Monday and report back to him on status. He will then modify dosage. Will advise upon response.
5/14 Dr C responded and lowered my dosage to 2000 mg B1. My tremors have calmed down so there is a distinct possibility that they were caused by stress, which I communicated. I will contact him in 30 days with videos and update at that time.
5/29 - My doctor prescribed Amantadine today - low dosage for tremors. This will be increased slowly as long as I don't experience side effects. My right side (tremors) is noticeably weaker than my left. I started taking B1 on May 1. I have not experienced any noticeable benefits as of yet. For the past 3 weeks I fast walk 4-5 days a week 2-3 miles, bike 2-3 days a week and go to gym 2 days. So I am extremely active. Other than tremors (and weakness on right side which are noticeabley getting worse), a little insomnia, slight and occasional leg cramps at nite. Anxiety on occasion. Still taking 2 gr. B1 as prescribed by Dr C daily. One note, I've recently had 2 operations with other unrelated health problems. I feel, as my doctor does, caused stress, hence the tremor increase.
6/3 -Started on Amantadine 50 mg once a day 4 days ago for tremors (breaking in slowly). Restarted 2 grams B1 on May 14. There is noticeable relief of two maybe three symptoms or the past 3-4 days (not commenting on tremors which the Amantadine is helping for a short time.) I definitely have more energy and have not gotten as tired after my walks or bike rides (which usually last an hour and are fairly intensive). Secondly, although I do not consider myself as extremely stiff, but over the past few days it is much easier to bend, twist, etc than prior. I am noticeable more comfortable and usually not the case as I do have back problems. Lastly sleep has been great. I do have intermittent insomnia. Whether this is do the the B1 or not I have no idea. I can't evaluate tremors as I am now on medication, but my mood and general feeling of well-being has improved... Will report back in 30 days.
I will be discussing with my local neurologist next month. Until my back op Very few tremors and symptoms. Been extremely active prior. He and I have felt no need at that time. We will re-evaluate next month.
Only bothersome symptom is at times strong right hand, arm and shoulder tremor. Amantadine has seemed to ease that. I’m at 2 gr of B1 a day. Plenty of energy and exercising daily. I can’t really evaluate the benefits but since I’m maintaining a reasonable quality of life and I will most definitely continue taking.
7/6 - Been on Amantadine for approx 5 weeks now. Less or milder tremors, but some undesirable side effects. Dr. Costantini took me off B1 for a few weeks ago for 3 days as the tremors had increased. Then recommended 2 gr morning and 1 1/2 gr lunch which I've been adhering to for the past few weeks. Seems to be the ticket as I'm feeling better, mood, strength, etc. I also workout, ride bike and walk 6 days a week. Sure the combination of it all has been helpful.
Would like to say that I'm quite frankly amazed at his quick responses. I am very grateful for his generosity.
Thank you for the update and glad to hear you are doing well!
Yes, so many people think they can just take thiamine and it will work fine, but it is becoming obvious that getting the dose just right is anything but simple for some and can take a lot of trial and error for some. Being in touch with Dr. C while testing thiamine can mean the difference between improvement and worsening of symptoms! I hope folks who are having less than optimal results with thiamine will start to see that one dose does definitely not fit all!
That’s certainly the truth! Ya need patience as external circumstances re stress, sleep, etc. can play it’s part in determining dosage. I now take 1 gr breakfast and 1/2 gram at lunch,every other day I take 1 gr at lunch per Dr. C’s recommendation. Seems to be the ticket.
I am probably mild compared to most but I exercise almost daily usually 40 minutes - 2 hours accompanied with Amantadine. Ive reduced the Amantadine dosage by 25% due to headache which are seemingly diminishing. I hope to reduce another 25% but will give a few weeks to see how this dosage fairs.
I wish more people who are trying thiamine could see your posts above so they can get a clearer understanding of just how hard it can be to find their most optimal dose of thiamine because your case is a perfect example of that. Yes, some people start at three or four grams and it works out fine for them, but they seem to be the exception and not the rule when it comes to oral thiamine dosing. Some people seem to be much more sensitive to thiamine while others are not sensitive at all! It also helps clarify for me why Dr. Costantini likes the intramuscular injections, as they seem to hit the mark more often than not on the first try and their benefits can be apparent within hours!
Yes, Dr. Costantini has his own methods of determining initial dosing, but that is just the beginning! As you have already learned, one dose size does not fit all! Even if you are working with Dr. Costantini, it can still take three months+ just to determine proper dosing and then from there he has to determine whether you may need to adjust your PD meds in order to maximize effect and then lastly he needs to determine if adding something like magnesium can further improve the response. Months of adjusting may be a pain in the butt, but if it works, it will be worth every second invested in that process. Even if you get good benefit within the first week, does not necessarily mean that the dose is correct because in a week or two, your symptoms may start to worsen, indicating that the dose is now too high.
You are basically trying to figure out the dose you will take for the rest of your life and though it is simple for some, it can be much more involved for others, but one thing is becoming clearer and clearer, those who work with Dr. Costantini "continuously" when they are getting started get the best results from thiamine!
You hit the nail on the head. Was frustrating but well worth the frustration. At first my tremors increased substantially with 4 gr. Even so with 3. Now, and sure the Amantadine does help, they are far less frequent and not as intense unless stressed. Note, I also take 400 mg of magnesium.
8/14- off Amantadine. Side effects not worth it for me. Headaches for hours. Working with mucuna conservatively so far no luck. Went down to 1G B1 a day as tremors (naturally increased since off Amantadine). Contacted Dr C last eve with general status, which outside of occasional sleep issues, some anxiety and recent substantial tremors are actually very good. He Wrote me back by 0700 this morning PST!!! He feels that I should try 1/2 Sinemet 100/25 and see how that goes, increase to whole if nec. Will discuss this option as well as mucuna with my neuro next week (not expecting positive response re: mucuna) but Looking at all options and will stay on B1 for rest of my life. I feel tremors increased originally as I had medical conditions which prevented me from any exercise whatsoever for 6 months. Normally exercise 1-3 hours a day from moderate to extremely intense. Will try to visit him next year with wifey.
Although I was dx in early 2017 had symptoms for a few years prior. I sincerely believe that my long distance, steep ascent cycling (30 years+) have put my PD at bay. Im back at it! (Excuse typos on cell)
8/20 - Visited my new neuro and yes heard of Dr. Constantini! Went thru my supplements and agreed to all of them. Thank you HU!
She felt still being in stage 1 despite quite active tremors, I should not be on C/L at this time. She want me back on Amantadine but without the rasagaline. She feels the combination gave me the horrble headaches. I will try. Need to wait 30 days to clean out system and then slowly begin Amantadine without rasagaline. Wants me to continue my B1 therapy (as recommended by Dr. C) and COQ10, fish oil and Chinese skullcap and a mild host of others vitamins (some suggested by my internist).
No doubt, and extremely comfortable with her questions and advice.. Like we all know we are all different. I feel she had the ability to ask the right questions (of me) and was honest with no BS when I questioned her on alternative therapies, mucuna, B1, everything. She happened to make a lot of sense. My previous I happened to like very much but felt the need for a different perspective on PD therapies. Hope I get lucky. Time will tell.
I don’t know! It’s UCLA/Westwood. and they assign one to you. My understanding they work as a team. Had to wait almost 4 months to get appt.
By the way no more headaches as I started Amantadine almost 2 weeks ago after 1 month off of rasagiline. However I’m still at 1/2 dose. Will provide update in a few weeks after I’m up to full dose. Still taking 1500 mg of B1. Except for tremors I have not been aware of any increase in symptoms in quite some time. But I also eat well and exercise daily.
No, dr Costantini recommended i reduce the dose because it lost effectiveness. I went from 4g a day to 3g a day and ive stayed with 3g ever since with excellent results.
Have you considered stopping HDT to find out if you get better or if it is actually doing anything for you any more.
Two things to remember, Dr. Costantini always said that a worsening of symptoms while on HDT is almost always an indication that the dose is too high and several members on oral HDT have mentioned that after being on HDT for many months, such as yourself, their symptoms have worsened because the need for HDT has declined as whatever the HDT is repairing, it equates to a lower dose of HDT being needed. KIA-17 is a good example of this phenomenon where he started having a worsening of symptoms after over a year and a half of being very stable with very good symptom control up to that point. Dr. C advised him to lower his dose by skipping HDT for one day of the week that would be easy for KIA to remember. That very small dosage adjustment was just the right amount to get KIA back to where he was with very good symptom control that was at least as good as before he started having the worsening of symptoms.
Dr. C has always maintained that the correct dose of HDT will only result in symptom improvements for those who respond to HDT, so if you decide to take a break from HDT to test whether the dose may now be too high, take notes each day. If you start to see that the worsening of symptoms declines during this off period, then Dr. C would say to adjust your dose downward. The sooner the worsening improves the less the dose adjustment downward will be. The longer it takes to see an improvement in symptoms, the larger the dosage cut will be. This is all based on what Dr. C has said when he was updating us.
Art! So glad to hear from you! I like your advice and I'll take it. i have worked very closely with Dr C the first time this happened. I was on 4000mg a day initially, good results then it ceased. He said double it for a month, if that doesnt work, go to half. My ding dong neuro screwed around with my meds and now I have improvement in some symptoms and worsening in others. Handwriting is better but I now get headaches and depression! Currently taking B1 HCL 2000mg a day.
I don't know if you tried low dose Naltrexone, but it does help with how you are feeling emotionally. I use 50 mg of Naltrexone dissolved in 50 mL of water and I use an oral dosing syringe and I use 3 ml before going to bed, I squirt into my mouth. Have been doing it for a few years now. You can also go to a compounding pharmacy and get it made up with a prescription. But it's cheaper to dissolve it.
I think I'm going to pass on the naltexone! I just started back on lithium orotate 2 weeks ago and been feeling less depression. Still dealing with worsening bradykinesia all over. Im going to ask my doctor about stem cells. See where that goes.
My GP gave me a prescription, so I get it in a regular Pharmacy , the first time I did not have a prescription I got it in a Canadian pharmacy by mail.
4-1/2 years post diagnosis. Tremor dominant. Taking 4 gm Thiamin HCL (4x500 twice a day). Noticed improved fluidity of motion and less stiffness. No noticeable effect on tremor or toe curling while walking. Also taking 25/100 CL three to four times a day and a variety of supplements (liposomal glutathione, niacin, CoQ10, lithium, B-complex, magnesium). Also walking 2+ miles every day.
Thanks for the suggestion Kia17. I take 200mg of Chelated Magnesium sporadically, generally at night. Do you take it before your walk or just work into your normal supplement schedule?
Aximagnesio is the brand name for a special type of Italian magnesium. I take 300mg of Aximagnesio with my morning Thiamine and a serving of MagTech at bedtime. I now know that the low carb diet is also relevant for dystonia reduction but Thiamine and Magnesium are both necessary elements in balancing our biochemistry and reducing my symptoms including dystonia.
Similarly on B1, *GSH/ injections, Niacin, CoQ10 and *lithium {*based in part on clinical recommendations of Laurie Mischley , ND, MPH, RD]. Plus: NAD+!Intranasal , Mannitol, & omega 3 I am now post-mega vit D3 therapy (adjusted)! Feeling good - at last . Report to follow 6 + weeks.
Just saw this post today and was interested in your supplement regimen. My husband started B1 last Thursday, 7/19. Dr. Costantini advised him not to take his multi or the B complex. I'm a little concerned but thought I'd give these first 3 weeks a try to see what may be the result of the B1. Are you working with Dr. C?
Hi Shakesabunch - My husband started on 1 gram at breakfast and lunch. After about 4 weeks, went up to 2 grams at B and L. Has been off for about a week because his drooling at night started up. All of this is under Dr. C's guidance. Have to email him today to see what next step is. I will say this, much to my surprise, I did a pull test on him on Monday and he held firm. Not quite sure what to make of this.
My husband is hit and miss with his sleep so I can't say the B1 has done anything one way or the other. Last week, while he was not taking the B1, he had 2 of his best nights in a year. A stretch of 6 hours without getting up. Minimal tremors and no drooling. He had some cashews and pistachios before he went to bed on those nights. And, then, he's also had some of the worst nights in the past year trying to replicate what he had done on the good nights. He is truly the "mystery man."
Both of those have magnesium, especially the cashews which could help with sleep. The magnesium is synergistic with the thiamine and his thiamine level would likely have still been elevated even though he had already stopped taking it.
I find the thiamine helps me sleep through the night and I do take magnesium.
My husband takes magnesium at each of his meals (malate and glycine?) and then threonate at bedtime. Besides magnesium, cashews also have tryptophan which can help sleep. The conundrum is that sometimes these things work (magnesium/nuts) and most times they don't. BTW, he also takes l-theanine at dinner. Frankly, this seems to work for his tremors a lot more than Sinemet.
Do you think it is the combination of magnesium and l-theanine or one or the other. I have seen people use this combination for esential tremor so it makes plenty of sense!
I'm not sure if it's the two things together - I'm pretty sure I've given my husband the l-theanine on its own and seen the calming effect. Anyway, doesn't hurt to try it. I buy a brand called Vital Nutrients, 200 mg per capsule. It's pricey because I try to get supplements that have the least crappy fillers. My husband takes one at lunch and one at dinner. The dinner dosage really allows him to have a reasonably calm evening. As I said, the Sinemet doesn't seem to help him much.
Started bi weekly injection of b1 end of last December. One injection is b1 and the other one is b1 mixed with glutathion. No reduction or amelioration on tremors so far
I just saw your post, so I haven't done much reading, but I did see that Dr. Mischley's administration was intranasal. Is that how you take it? Otherwise, do you think that because absorption is a problem, that NAC produces more GSH in the brain then oral administration? Probably somebody sells liposomal? Is S-Acetyl Glutathione better absorbed?
I'm taking 3000 mg of thiamine A day for a month now. I think in general I feel stronger, toe curling is gone, still have tremors and far from perfect, but I do feel more positive and stronger over all which is wonderful.
Have started and abandoned it a few times - just didn’t feel well on it, yet each time attaching so much hope for it to work .... May need to stay on it for longer.
Hi, my husband started on 1g a day and his mood has become increasingly anxious and today he is feeling suicidal. When you say you feel unwell what symptoms do you have?
Sorry for the late reply. I hope your husband is feeling better now. From my own experience, feeling suicidal can be caused by being in great physical discomfort which can in turn lead to a sense of hopelessness and despair.
Have you written to Dr. Costantini for dosage instructions? I did not do that to begin with and went ahead based on what I had read on this forum. On some days I would take 1g and on other days 4g or not at all. I had bouts of palpitations and worsening fatigue which might or might not have been due to thiamine alone as I was taking a number of other supplements at the same time. I later got in touch with Dr. Costantini and started seriously taking 3g/day and suspended all other supplements based on his advice, and after 35 days of following the regime I think I am beginning to feel its benefit, especially in my energy level. So I'll pass on the suggestion to me from GioCas above: if you have not already done so, please write to Dr. Costantini for help.
Thanks! I have emailed him and had an initial reply asking what type of atypical PD he has. I said we haven’t seen the specialist yet so don’t know and he hasn’t replied again. I am not sure if it is because we haven’t seen a specialist. My husband hasn’t got severe symptoms yet so he is not in any discomfort and was diagnosed 3 months ago. The rapid increase of anxiety over the 7 days he was taking the b1 was why I thought it had caused it as his mood had been pretty stable over the 3 months.
Thank you for your kind suggestion. Visiting Dr. Costantini has been my intention from the start. In fact, any excuse to visit Italy is a good one to me . You are right: for now I should try writing to him as many other people in this community have done - the Doctor sounds very helpful.
It is the positive experience of people like yourself with thiamine that makes me to want to keep trying. Thank you so much for sharing.
Started taking Thiamine 3grs daily divided dose in the morning and noon from May 2017. I have almost 0 symptoms for the past month or so. I also take D3, Magnesium, Omega3-6, NAC, B12 and Floate with a very low dose of B6.Plus Mannitol 5grs twice a day.Sinemet 6/25:25 twice a day .
In my first visit with Dr Costantini my UPDRS was 11 but after few months became 0.
Had symptoms for few years. Diagnosed in March 2017 with positive DatScan.
Sinemet 12.5/50 half a tablet twice a day.
I have seen Dr Costantini 3 times since May last year every few months and the last time was in October 2017 and he said that I didn’t need to see him anymore.
Thanks, do you live close to Italy ?? Is it necessary to see Dr. Constantini personally, I mean or the appointments really extensive (ask he a lot, and does he a lot of examinations (B-level in blood)) or can you do it at home??
Because I have the impression that the classical neurologists (in Europe) do just there fix programm.......
As promised to Hidden , here is our journey to date with B1.
( BTW, it was a pleasure to meet Dr Costantini who is most unlike our formal neurologists in NZ. He cuddled my husband and repeated ' You be better soon..' many times. I found myself getting teary with his humanity and warmth towards my husband during the appointment)
After my husband's appointment we continued with me injecting him with a vial of B1 twice a week as instructed by Dr.C. We were travelling on holiday ( 1 month) and so it was difficult to tell if there was no improvement or a worsening of symptoms during that time. To make it more confusing, there were moments when he was great, but they did not last. Once we got home and after I posted on this forum and had some wonderful advice from others on this journey, I emailed Dr C who suggested halving the dose. I have and now we have not looked back! Hubby is doing great. His balance is excellent and all sorts of little things have improved. Mostly he is talking and smiling more and being very cheeky. He does not wake me at night now and so my life has improved also. We are looking ahead with much more optimism.
I just do not want to jinx it by gushing too much.
I love the saying on this forum that Parkinson's is just a 'paper tiger'. So now I am trying to let go of my fear of the future.
This is a great idea! My husband was diagnosed in February this year (2018). He has a tremor in his left hand and arm. Some rigidity, fatigue, forgetfulness, trouble multi tasking and a slight temor developing in his left leg also some facial masking. He is taking Sinemet 25/100 three times a day. He is also taking:
1. Magnesium Citrate (taking 900mg)
3.Vit C (taking 1000mg once daily)
4.Vit D3 (taking 5000iu daily)
5.B1 Thiamine HCL tablets (Taking 1g twice daily)
6.CoQ10 - ubiquinol (Taking one 300mg tablet in morning)
8.N-acetyl L-cysteine (NAC) with Selemium (Taking 600mg once daily)
9.Vit B 1, 2, 3, 6, 12 - (Taking mega B complex )
He only started the Thiamine HCL last week 3/5/18
I recently emailed Dr C. and he has advised him to stop all supplements other than the thiamine HCL and prescription meds. So that is what we are going to do starting tomorrow. Dr C. is going to advise us on dosage. We are sending him a video of him walking and his face and tremor.
I'll keep you updated on our progress. If we can just improve the fatigue I'll be pretty happy.
Thank you for posting. My husband is taking the above med and most of the vitamins you have mentioned. On Thiamine (dose recommended) for one month. Do you know why Dr. C. has recommended that you stop the vitamins?
He didn’t say but I assumed so he could monitor effect of thiamine alone. We are stopping suppliments but not sinemet. He ask me to stop suppliments so I assumed that didn’t include prescription medication.
I take 2mg B6 a day which is with magnesium pills. Some B complex supplements have over 20mg that I consider too much. We also take B6 from our diet so should be cautious about the amount we take.
My complex is called Neurobion and contains 100mg of B1; 200mg of B6; and 200ug of B12. I've been taking it for a few years. Have you any idea how Peripheral Neuropathy manifests itself? Maybe I should add that I've been a vegetarian for 40 years.
“Peripheral neuropathy, a result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body. Your peripheral nervous system sends information from your brain and spinal cord (central nervous system) to the rest of your body.”
“But vitamin B6 is a balancing act. Not enough B6 will cause nerve damage, and too much B6 can cause nerve damage. Again, this can occur in some people at as little as 100 mg per day.
Good sources of vitamin B6 include vegetables, nuts, bananas, and meats. However, cooking and improper storage of food can cause the vitamin B6 content to be depleted relatively easily.”
I've had peripheral neuropathy (tingling sensation in fingers and toes) for the past 4 years. Recently it started spreading to the soles of my feet which I mentioned to neurologist. He tested me for B6 - it was 3 times the normal levels so he told me to discontinue B6 supplementation which was only 20 mg/day as part of B complex.
Yes, after stopping taking B6 the tingling went back to "normal" - just fingers and toes. Also want to mention that I have MTHFR genetic mutation and may have issues with some of B vitamins metabolism, although I try to take them in bioavailable form and was taking B6 as pyridoxal 5′-phosphate. It seems that genetics play a big factor in how much B6 someone can efficiently metabolize without overdosing.
Sorry for late reply, I just noticed your question. According to Dr. Ben Lynch who himself has MTHFR variant these are the supplements supposed to be taken, however he usually points out that you can't treat just one gene as there are many others that may have adverse reactions from same substances:
General Nutrient Recommendations for C677T MTHFR mutations:
This is a difficult question because beside mthfr there are other genes that might need to be addressed and according to genetic experts if someone has CBS mutations (like me and my family members) - that should be addressed first. Then the real confusion begins - some of the supplements that are recommended for mthfr turns out are not so good for our CBS variants (NAC, P5P, etc), so it really can get mind boggling. I think the best way to find out what to avoid is by trial and error. I wish I could give you a more clear answer...
Thanks for answering my unasked question! I have been beating myself up for not eating better and wondering if I had been a vegetarian if I could have avoided PD. Guess I can quit thinking about that now. That is enviable being consistent in your good eating habits!!
When I started Thiamine I wasnot taking any Sinemet and later started a low dose Sinemet. Its better to ask Dr Costantini about any changes to your medications.
At the time of my diagnosis, I had a resting tremor in my left hand, and was VERY tired ALL the time.
I'm currently taking Sinemet 25/100 four times/day. .5mg Benztropine once/day. Very little difference in both tremor and tiredness.
Two weeks ago, I started Thiamine HLC. 4 X 500mg/day. Shortly after starting the Thiamine, I took myself off Benztropine. I was experiencing lack of focus/concentration, and I thought it might be caused by the Benztropine. Within 24 hrs of going off the Benztropine, my tremor in my left hand got worse. Because of this, I thought that Benztropine we helping, and that maybe I should get back on it, and increase by dosage.
The following day, with my doctors approval, I started taking the .5mg 2 x daily. Within 24 hrs., my tremors were almost gone!
Not sure if Thiamine HLC played a part in this or not, but I'm going to keep taking it, and probably will increase dosage next week to 3 x 1gm/day. (Hoping this will help increase by energy level...)
I'll keep you all posted on my findings.....
LOVE this site. A lot of good people with good hearts!
Thank for sharing. You sound similar to our situation. Can’t wait to hear how it goes. It’s so hard to work out what is cause what sometimes! Stick at it. I think time will tell in the end.
When I was diagnosed May 2012, I was extremely tired, all the time. Blood test showed very low level of B12; I had monthly injections for two years plus oral supplements. Helped immensely. I continue to take 1,000-2,000 mcg of B12 per day. Also 8,000 IU per day of D3. Low levels of either can cause fatigue. I also take C & E, magnesium, probiotic, CoQ10. Going to look into thiamine.
I though you should read the post that went up recently with Dr constantini's answers to frequently asked question, It has info you can use to assess your dosage of thiamine. It's important to get it right and it is not the same for everyone. You can take too much. Anyway have a read and see if it is useful for you.
Just started B1 Thiamine HCL May 5th (2g twice per day)
No noticeable change at this early stage.
-----
Update:
It is now May 21 (2 weeks in), only change is less constipation. Started taking B1 using the Solgar brand, after finishing the bottle I switched to the Vitacost brand, found that the Solgar brand affected my constipation better, I had daily bowel movements, with Vitacost B1 I may skip a day.
Update:
It is now May 29th (3 weeks in), the thiamine is still working wonders for my constipation, no other positive results at this time. I have developed Restless Leg Syndrome the past 4 or 5 nights, I am not sure if this could be related to the thiamine. I do take a magnesium supplement morning and evening. I have not taken the last 3 doses of thiamine to see if this makes a difference with the RLS.
Update:
It is now June 4th. I stayed away from the thiamine for a few days, the RLS symptoms stopped, after 4 days of no RLS I started thiamine again, so far the RLS has not returned. Relief from constipation is still the only positive from taking thiamine.
Update:
It is now June 11th. Other than constipation relief, no other benefit do I feel at this time from taking thiamine.
Update:
It is now July 3rd, I have just sent the following update to Dr. Costantini:
Hello Dr. Costantini
When we last communicated you advised me to stay with the 2 grams of B1 twice per day for another month. I have to report to you that I have not noticed any improvement to my Parkinson's symptoms, in fact I feel that I have declined, I feel more fatigued and feel that my gait has worsened. The thiamine originally helped with my constipation. but this now seems to be returning. When you have time could you please advise what I should do next?
Regards
Kenny
Response from Dr. Costantini:
Increase the dose to 3 grams twice a day and keep me informed.
three grams twice a day
Update:
It is now July 15th, I just sent the following update to Dr. Costantini:
Hello Doctor Costantini
For one week I took 3 grams of thiamine twice daily for a total of 6 grams daily. I continued to feel terrible. I stopped taking thiamine for one week and would like to start again. I was thinking of starting with 1 gram twice daily for a total of 2 grams daily. What do you suggest Doctor Costantini?
Regards
Kenny Broezell
Following is my history:
Diagnosed: October 2014
Symptoms: mild, slight right hand tremor, gait, severe constipation.
Taking carbidopa levodopa (sinemet) 25/100 3 times per day.
Originally started taking 2g thiamine twice per day.
Weight: 200 pounds (90 kg).
Height: 69 inches (175.26 cm)
Doctor Costantini replied:
How do you feel now after the suspension?
Hello Doctor Costantini
I feel somewhat better now since stopping the thiamine, I still feel the tiredness and fatigue which comes with my Parkinson's, just not as bad as I felt while on the thiamine. I did take 4 grams of thiamine daily for several weeks before the tiredness and fatigue had gotten worse than what I consider my normal tiredness and fatigue. During the first several weeks of taking thiamine the only relief I experienced was with my constipation. Toward the end of taking thiamine my constipation returned, for a couple of days after stopping the thiamine I was not constipated.
Regards
Kenny
Doctor Costantini replied:
Dear kenny
from next Monday begins to take two grams a day, one gram in the morning and one gram for lunch. Keep me informed every two weeks. We will find the right dose soon.
Update:
It is now September 3rd. I missed updating this file at the beginning of August when Dr, C had me start taking 1.5 grams twice per day.
Update to Dr C on Friday August 3rd:
Hello Dr costantini
I have been on the 1 gram twice per day for almost 2 weeks (Monday will be 2 weeks). This doesage has had no affect on me and I remain constipated. should I increase the doeage to 1.5 grams twice per day?
Regards
Kenny
Responce:
Increase the dose since Monday and keep me informed
Update to Dr C on September 3rd:
Hello Dr costantini
I have been taking 1.5 grams twice per day since August 6th. This dosage has had no positive affect on my Parkinson's. I do move my bowels daily but I have to strain and my stools are hard and round like a marbles.
My right side is the side affected by my Parkinson's, since starting taking the B1 I have noticed no improvement with the motor skills of my right hand.
Hello Smirknof. I did not feel that I was making any progress so a few months back I did a reset where I went down to just 500mg of B1 per day, every few weeks I would add another 500mg, for the past few weeks I have been at 3.5g (2g in the morning, 1.5g in the afternoon). Still no benefit. Today I moved up to 4g per day, I'll have to wait and see if this dosage provides any benefit. Thanks for asking, sorry that I became laxed with my updates.
The B1 quantity depends of your size and weight. 4g/day it may be too much. I started at 2g/day and saw improvement after a week. For some people it takes month. Now I'm at 1g/day.
they are positive because I write them only when I'm in a good mood 😂 thank you
Overall, the reports from PWPs using thiamine at varying doses appears to be fairly positive and useful for others considering Dr. Costantini's protocol. Thank you to all who have taken the time to respond so far and I look forward to your updates!!!
From what Dr. Costantini has said, it takes both levodopa and thiamine to do away with tremors and he adjusts both doses accordingly in order to get the best effect, but he has also stated that the tremors can be stubborn and are usually one of the last symptoms to go. That is why it is very helpful to stay in touch with him while using his protocol. GioCas, has eliminated his tremor, but he has also been on thiamine for 2 1/2 years now! Kia 17 reports almost zero symptoms after about a year on thiamine!
I went shopping with my wife today. 60 days after starting and continuing with 4 g of Thiamine HCL daily. My wife gave in, and went to the car while I stayed shopping. Today is the first day since DX 3.9 years ago, that I had the strength, stamina and absence of pain to stay on my feet for over 4 hours, and out last my wife. 😀
I have just started with the pure thiamine powder (1 week) I take 2g per day as my weight is 53 kilo. I add it to mannitol and 100% coconut water. After a week I feel I have more energy. Will keep you updated.
I tried allithiamine and thiamine hcl with no noticeable changes or improvements. However, I recently tried sulbutiamine (400mg in the morning) and noticed a significant Improvement on the first day when I went to drive somewhere. It was a significant Improvement in my anxiety, my reaction time,, and overall handling of the vehicle. I was even able to drive with one hand like I used to do. I also drool excessively at night, however that has stopped as well since I began taking the sulbutiamine. It's only been 4 days but I'm wondering how long these improvements will last since it indicates on the bottle that with continued use the effectiveness May diminish.
Unfortunately the Improvement in symptoms was very short-lived. It only lasted a few days and then it was gone. I even tried stopping the sulbutiamine for a week and then restarting, but I was unable to replicate the Improvement I had initially experienced.
It may be worth taking the time to give thiamine another shot since you already know that you tolerate it well, but this time do it in contact with Dr. Costantini so he can suggest a starting dose based on your current situation. There seems to be cases where he has recommended going above 4 grams in order to achieve improvement.
I emailed Dr Costantini 10 days ago at haven't heard back yet. I want to start thiamine hcl but am unsure about dosage as I am 153 cms and 47 kgs.I was diagnosed in December 2017 and take 1 x25/100 sinemet and then half midday and evening. Symptoms are mild slight tremor on my left hand and some stiffness and slowness. Any advice would be great. I'm 58 and live in NZ
Write him again. I have had to do this myself. I think he goes through periods where he is completely inundated with emails and then slower times when he is able to respond quickly as evidenced by his track record on this forum. He says over and over that he will answer emails about thiamine so I say hit him up until he does!
I have also emailed him a couple of times recently but had no reply after the first one. I suspect he is becoming so popular he can’t keep up! We are in nz too.
Coming up on 7 weeks of using Thiamine HCL at 2 total 500 mg Solgar tablets in the morning and again at lunch. I’m 56, 5’11 and 150 lbs. 3.5 DX. No Pharmaceuticals.
Marked improvement in balance which has additionally benefited my walking, turning around, and driving. Also improved finger dexterity with typing.
I have a mild intermittent tremor with no noticeable change.
Throwing on some high heels and heading out the door...have a wonderful day!
Doc Costantini asks that we should also take carbadopa levadopa. B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms
I’m not sure that data exists proving Mucuna is not as equally beneficial as
C/L with regards to the Dr. Constantino B1 protocol .
This is a copy of a post by tarverusmc regarding thiamine usage :
tarverusmctarverusmc 3 days ago 33 Replies
My First day was amazing with my dose of 500 MG of Thiamine.
Still taking my PD meds, I felt totally normal with no tremors, having normal thoughts and communication, and my foot started to work again.
Today, with med's, I am at a state where I can type again, walk normal again, without any tremor's or any PD symptoms..
Wish me luck in the next coming days and just maybe, No More PD Meds....
PD meds list
25/100 Carbadopa Levadopa x10 daily
Encatapone X 3
.5 mg of cenamete x daily
Donald Tarver
2695680512
thiamine
Update as of June 2, 2018:
This is a direct copy of a post by tarverusmc to the question :
How’s the thiamine working out?
tarverusmc
2 minutes ago
really well.
update is 1000mg breakfast
1000mg lunch
PD med regular.
no left leg pain
no left side tremors
mind and body is clear
relax and not anxious
no rigidity
no pd symptoms that I had before the thiamine protocol
two weeks with this dosage and i will try to reduce pd meds slowl
This is a copy of a post left by Jumex2017
Jumex2017
11 hours ago
My husband had pd since diagnosed last sept. He has all the symptoms but he eats a guinoa oats breakfast with Chia, grounded flax, blue berries and apples. On top of this I add dried pumpkin seeds . He doesn’t suffer from constipation but after taking dr C’s treatment of high dose of b1 complex he’s able to walk for longer distances and seems to be happier. He’s only started taking this b1 about 19 days ago and I can see a vast improvement apart from this he also takes magnesium and q 10
4 likesReply
This is a direct copy of a recent post by Jmwg45 :
Jmwg45in reply to Greenday
4 months ago
I’m a bit worried to get over excited by the results. After seeing stuff on here about b1 I looked up symptoms of deficiency and identified several that I thought were just PD.
I have been on 5 weeks total, 3 weeks at 4g/day.
In the last 10 days I have felt better than for 5 years (dx June 2015).
I went on a 3.5 mile hilly dog walk and took 12 minutes off my time 4 weeks ago. My normal 40 minute walk (flat) now takes 35 minutes. I am now full of energy at the end instead of depleted.
I do PD warrior which normally takes a couple of days to recover from. Felt great next day and ready to go again.
I am better able to focus at work and get more done. According to my wife I am far easier to live with, do more to help and deal better with our young children.
All told, I might be just having a really good couple of weeks so trying to not get carried away. But so far I feel transformed
5 likesReply
Based on the following PubMed study abstract, oral thiamine may be more tolerable than intramuscular injection for at least one person.
A Case of Anaphylaxis to Intramuscular but Not to Oral Application of Thiamine (Vitamin B1).
Aurich S1, Simon JC1, Treudler R1.
Author information
Abstract
We report a 78 year-old non-atopic female with polyneuropathy who started to receive monthly intramuscular injections of thiamine hydrochloride. She had an anaphylaxis after the fourth injection. Skin prick test (SPT) with pure commercially available aqueous preparations was positive for thiamine hydrochloride. A titrated, single blinded, placebo-controlled oral provocation test with thiamine hydrochloride was well tolerated. The patient was then diagnosed as compartment allergy with hypersensitivity to parenteral but not to oral thiamine. Because in our patient, oral intake of thiamine has never been reported to lead to any adverse reaction. Oral tolerability might be due to the uptake mechanism of thiamine in the gastrointestinal system.
Started Thiamine yesterday under Dr Constantini’s suggestions. Watch this space. No other meds or supplements
• in reply to
2.5 days in. 1 gram, 3 grams today 4. Calmer, eyes shiny, hand-eye coordination improved. Thiamine smell to the sweat after exercise. Shakes come and go. One glass red wine is too much at the moment
• in reply to
First week....Still calm. All symptoms toned down. Non gone yet. Settled at 3 grams. Prescribed 4, but produced jitters. Steering clear of any alcohol and coffee both worsen tremor
I’m at 8-9 weeks 2000mg Thiamine daily with fantastic results. All my Pd symptoms are waning including tremor. I should say I did not have a full time tremor anyway probably a 4/5 on a scale of 1-10. Ten being the worst. My tremor is now a 1/2. Balance feels normal, this had been one of my most troubling symptoms. Gait could still use improvement but has hours of normalcy some days.
I have found that periodic dose skipping seems to benefit my symptoms, I’ve done this several times. I do not take Pharmaceuticals. Just Mucuna/vitamin already mentioned on this site. I’m 3.5 years from my first noticeable symptoms.
Update 6.10.18.
Several times over the past 9 or 10 weeks, I've become overly jittery. The first time was early on and I stopped taking the B1 for a full day. This eliminated the jitters and provided lasting positive effects. The second time I became jittery was last week I stopped the B1 therapy for two full days this time because I knew the therapy was durable. Again I experienced lasting increased positive effects, including a further reduced tremor.
I'm on a low dose of B1 at 2000 mg per day. This because I think I have high absorption. I also use Mucuna at a low dose with good results again because I think I have high absorption.
All in all him having fantastic results with the therapy from subtle to obvious. The most recent being voice tone/deflection has become normalized. Other improvements are, great balance, swift movement, high energy, happier demeanor, reduced tremor, confident swallowing, increased expression, reduced weakness, relaxed muscles, regular digestion.
I enjoy working full time running my company of 25 employees. I'm re-engaged since starting the B1, no longer at times hiding behind my office door. Also started going out on customer appointments again. Yesterday went shopping for new car, and lunch with friends. Back to getting pedicures,manicures and my hair done without worry.
Life is completely manageable, almost normal. My husband is amazed at the difference and so am I.
Hoping that one thing still improves. My gait is good and has shown continued inconsistent improvement. What I'm looking for normal and consistent.
Thanks for sharing. Hope you continue with the great progress. I’m contemplating the protocol. Curious how much macuna you take and if you take any RXs. Thanks.
Natasha, I take 2 to 3 40% capsules daily. No meds. I don’t seem to need a lot of B1 or Mucuna to get great results.
This is a direct copy of an older post by RedwoodPark :
RedwoodPark
2 months ago
Last March, I started taking thiamine HCl intermuscular injections twice a week of 1 mg along with the vitamins recommended by Dr. Constantini. One of my friends lives in Rome and was able to help translate for me. He truly seems like a good guy. I saw the impressive videos that he filmed of his patients and was hopeful. I had not started taking levadopa yet, so I tried just with thiamine. I did not feel much improvement after one month, so I began taking levadopa. I am taking 1 x 3 times daily 25/100 carbi- levadopa. I feel like my fatigue is much better than it used to be but I am not sure how much the thiamine is helping me. I did stop taking it last summer for about two weeks and felt worse so I went back on thiamine. So I feel that it does help at least slow or halt the progression down somewhat. But my results are far from the miraculous improvements of the patients on his videos. Now that more people are trying it, it will be interesting to see how many folks actually do improve to the point of having no symptoms anymore. I am thinking about switching from IM injections to oral pills to see if it's better. And I wonder what is the B vitamin formulation to take in conjunction with the thiamine. For me, my condition varies so much each day except for one pattern and that is I feel best in the morning until noon and then it's downhill from there. Does anyone feel the same way? It's difficult to figure out what is the best combination of supplements and medication to be optimal.
By the way, thanks to everyone contributing to these blogs. Really helpful exchanges of information. Sorry I haven't spoken up sooner.
Doc Costantini consulted with me through email. He did not take into account my weight when he presented thiamin hci dose of 4g a day. I assume he based it on my current, at that time, medication/supplement choice.
He did not charge me a fee for his service. He is not selling supplements.
I have benefited greatly from the humanity and generosity of these humble doctors.
The improvement of my health was noticed by my dentist who commented on how well I was walking now after six months from last we had appointment. I report this because some of us miss the regression of symptoms until noticed by our friends and family. The person with Parkinson's may give up on this treatment too soon.
Go to my profile. Regarding B1, thiamin HCI, read my posts and replies. Click Follow. Learn of my experience over the last year. Discover my wellness as direct result of first choosing hi dose allithiamine then later thiamin HCI.
I have faith and a testimony that from here and the future I am going to be OK. Thanks to Doc Costantini who receives no monetary reward nor requires anything of me other than his happiness for my Parkinson progression stopped, symptoms under control.
Will Dr. C consult via email too. I live in India. Is thiamine available everywhere? I suffer from intense hand tremors while in action makes me to loose confidence.
Just for the record I add my case here. Now in week 6 at 2.5g Thiamine hcl. No improvement for 3weeks then all fatigue, stiffness and pain disappeared. Week 4 hand and feet dystonia also cleared. Balance is now good. No change yet to tremor. Dr C asked me to stop prescription meds so just on B1. I now get really vivid dreams that wake me up. Will update Dr C next week.
Is it my imagination or is a trend developing in which people are reducing their dose of B1 after several months of a dose which initially seemed "right"?
======
wriga replied:
Good morning jim,
I have noticed the same trend and I will now apply it to myself.
I first started B1 pills on 2.5g per day and it worked well at that dose, much improving most symptoms, esp. leg and hand pain, stiffness, terrible fatigue etc. tremor was only a minor problem then and didn't bother me. Dr C told me to up the dose to 4g. I went progressively to 3.5g with further improvements and stayed there pretty stable for 6 months. 3 weeks ago, without changing the dose symptoms came back with a bang, along with strong tremor and weakness in the left hand. At first I put this down to PD progression and I upped the B1 to 4g/day. ERROR ! Symptoms just got worse. I am now into the 5th day of a PILL STOP. No pills at all. Symptoms declined steadily over three days and I'm now back to the best days of mid June. No pain, no stiffness, very minor tremor. I will stay on this pill stop until I detect that I need to build up my bodily stock of B1 again. It this takes a long time I will make a major reduction in my B1 intake. The half life of B1 in tissue is between 10 and 20 days, so I'll be guided by that.
Conclusion : by keeping on the same B1 dose for months I eventually reached saturation and long-term B1 overdose.
I started taking 500 mg. of thiamin May 26. Thursday May 31 1000 mg. Too quick a jump? Would Sunday (tomorrow) be too soon to go to 2,000 mg, I wonder? So far, I've experienced no changes. I take dopa mucuna, 3 capsules 3 times a day, but no pharmaceuticals. My one foray into C/L was a horror.
Thanks for sharing your experience. I am not on any meds and considering Macuna if needed. Would prefer to try thiamine protocol first. Would you share what brand of macuna capsules you use. Good luck on the protocol.
6/1/2018 Started 500mg THIAMINE HCL from Vitacost x 4 per day 2,000 mg. Dr C reviewed my brief email summary in one day and replied that 1. I should refrain from all other self prescribed supplements for one month, and 2. submit a video of myself talking (facial expression I suppose), walking ( up and back I suppose ), and responding to The Pull Test. I am on 5mg Selegiline, Mannitol, Coconut Oil and supplementing with these items which I will now remove for Thiamine trial: Omega 3, NAC 1200 mg, NAD+Reveratrol& Quertin , Vit D, Melatonin, Mag, andCoQ10. I will report back in 4-6 weeks.
Hi. I'm just an observer of the Thiamin Protocol so far. I haven't found the courage yet to try such a high dosage, even though it's a water soluable vitamin, but I'm thinking I will email Dr. Costantini soon. One thing I have observered is some individuals start, stop, and change their dosages without notifying Dr. Costantini. I know they don't want to bother him, but I would think he needs to know how this is affecting each person to keep his case/studies accurate. Just a thought.
There really isn't a reason not to contact Dr. Costantini as he has made it clear he will answer thiamine inquiries as quickly as he can.
Diagnosed in March 2017. Markers limited to right hand tremor and constipation. Started on Carb/Lev protocol 3X100. DaT scan reviewed by Mayo's Scottsdale, Az. 2nd opinion, Local Dr. palmed me off on assistant and I never saw the Neuro. Ask a question, take a brochure. The office jumped my PD med strength to 3X25/250. Metformin for diabetes and Carb/Lev a that level tore me up. Self regulated the Carb/Lev to half pills. Seemingly OK. Started B1 on 5/29 @ 500mg and jumped to 8 X 500mg on 4th day. Anecdotally, I began regular bowel movements for the first time in over a year on the 5th day and every day since. Under stress or observing stressful situations, I still shake but during day severity has dropped precipitously to the point my family remarks that "You don't shake anymore!". I am only 10 days into this experiment and it is far too early to attribute much of anything realistically but placebo or actual impact of the Thiamine on my system is welcome. We keep marching.
Would the Dr. be interested in those of us that have DaT scans for later comparison?
st8farm, has updated his results as of 9/15/2018. Here is a copy of his post:
st8farm
st8farm•
2 hours ago•5 Replies
Quick follow up on progress. B1 since end of May. Parkinson's Dr. saw me yesterday to follow up on my recent testing. He started off by asking me what I was doing different these days as the results of my tests and his visual inspection of my current persona indicates that I am "better than when he officially diagnosed my Parkinson's over a year ago". All of my PK markers are gone except for a very slight right hand tremor that comes and goes intermittently. Having said that, he said that observing me now it would be hard to diagnose Parkinson's if he didn't have the DaTscan and his historical records of his observations from 6 mos. to a year ago.
I fully understand that I am still a PK diagnosis but on the basis of my current condition I feel I can live the rest of my life fully and with vigor. I give all credit to Dr. Constantini and you good folks on this forum. To anyone struggling, keep up the fight and don't stop searching for your answers. They are out there and I think there are better days for us all to one degree or another.
I emailed Dr Constantini with my PD statistics and received a reply in about 14 hrs. Will start thiamine 2 grams twice a day tomorrow (have been taking 1 gram 2Xday for 4 days) . I have already noticed a significant decrease in left forearm pain which I've had over a year. Time will tell--fingers crossed.
I'm now at 2 weeks, taking 4 gms of B1 by mouth. Like everyone else, no longer constipated, but I wonder if that's more a mechanical effect of the thiamine on the colon, rather than an improvement related to the effect of the thiamine on actual neurological function. Did anyone on intramuscular B1 see an immediate effect on constipation within 1 week? Otherwise, I don't seem as foggy, I no longer fall asleep and nap in the middle of the day, my levodopa/carbidopa seems to last longer, and my activity tolerance seems slightly better. Strangely, I noticed I was having more trouble reading with my bifocals, and have discovered I can read up-close more comfortably and easily WITHOUT my glasses now--weird! Still, it's too early to declare it a success, as I still have occasional short(er) episodes of stiffness and limping on my affected side. Will update in another week or 2 as things progress (or not).
Going into my 3rd week of 4 gms of thiamine, I began having an increase in the severity of my tremors, and breakthrough tremors between doses of my levodopa/carbodopa. So I have stopped my thiamine for a week, and will then restart at 2 gms. I've sent an email to Dr Constantini.
Per Dr Costantini I restarted thiamine at 2 gms a day (1 gm 2Xday). After 2 weeks I tried increasing to 3 gms a day, but noticed more tremors and more stiffness again which affected my walking on my affected side. So it looks like I'm going to just keep it at 2 gms a day and continue to assess my results a little longer. On the 2 gms I seem to have more activity tolerance and noticed my affected arm is developing a natural swing again when walking. I might be developing a slightly better sense of smell also, but I'm not jumping to conclusions just yet. It's only been 6 weeks (with 1 of those weeks without thiamine while decreasing from 4 to 2 gms a day), so am hoping things will continue to improve. I'd say I've had some improvements in everything except my tremors. I'll do another walking video in a month and compare to my 1st video.
You said, "more tremors" when you increased your dosage to grams/day. I was wondering if the more tremors was all day, morning, afternoon or evening or a combination of these?
Yes, I agree, no need to jump to conclusions. Just get your dose perfect and go from there!
My tremors would mainly occur right before my next scheduled dose of C/L and were significantly worse than the tremors I had before I started thiamine.
Update: I've been on thiamine for 6 1/2 weeks with 1 week off in the middle for a dosage decrease. I'm noticeably better with more energy, and don't have to stop and rest twice while vacuuming my living room or sweeping the kitchen. I have return of arm swing on my affected side, and more flexibility. What really convinced me it was having an effect was when I noticed that I can now wash my hair with both hands normally. I had gotten to the point that I just didn't have the strength or flexibility in my hands to really wash my hair effectively. I think I am getting my sense of smell back too, but not significantly yet to say for sure. I still have room for improvement, and am hopeful that I'll continue to improve. I'll do another walking video in 2 more weeks and compare to my first one.
I'm currently taking one gram a day trying to perfect my correct dosage. I've noticed it's about 2 1/2 weeks after a dosage change that I get worsening of some of my improved symptoms. I think I will probably settle at 1 1/2 grams a day eventually, but am going to stick with 1 gram/day for at least 3 weeks before I go up to 1 1/2 grams. Incidentally, although I am left-handed, I hadn't been able to use a computer mouse with my left hand due to tremors and/or weakness for years--yesterday I realized I was using my mouse with my left hand without any problems. Also today with no problems. That's pretty significant to me!
Sorry I have dropped out of sight for quite a while. I decided I owed it to my fellow PWP to give an update. I finally settled on 1000 mg daily after adjusting from 2000 mg daily down to 1500 mg, then finally down to 1000 mg daily consistently starting around the end of September. I've been doing pretty well, in fact my balance is definitely improved a lot--I had been looking up at my ceiling fan's blades for a couple weeks, thinking, "I've got to have my son dust those for me the next time he comes by," because I hadn't trusted my balance to stand on a chair to reach overhead for some time. Of course, I would always forget to ask him. So last week, I thought 'let's drag a kitchen chair in here and see how it goes. My ceiling fan has 5 big blades, and I was able to easily reach overhead and wipe them all down, getting up and down to shake out my dust cloth outside several times (because they were REALLY dusty). I had no balance problem at all. In addition, I recently took a friend of mine to a local hospital to visit her husband. She has had mobility problems herself recently, so I dropped her off at the entrance and then had trouble finding a parking spot. I ended up parking WAY across the lot in the parking garage. I hurried across the lot thinking she would wonder if I'd gone in a different entrance. When I got to her, I told her I was afraid she would think I went in another way, and she replied, "I watched you walking across the lot--you were walking so briskly, I wish I could still walk that fast!" I also now don't have tremors when I get up in the morning, and although I have tremors that occur about 3 1/2 hrs after each dose of C/L , the tremors only last about 30 minutes then disappear so I can wait and take my 2nd dose 5-6 hrs after the 1st dose. And I usually then go 8 hrs between the last 2 doses of the day. ( I take 2 tablets of C/L 25/100 mg 3 X day). I also have much less cramping in my legs and hands. So I'm happy with my results. It took me from June 1st to Sept 25th to settle on the dosage for me. I was afraid if I didn't post something, people would think I had stopped the Thiamine!
Thank you very much for posting your update exactly where it should as a continuing thread of your improvements in chronological order...perfect! You are correct though, as when members of the forum who are testing or using HDT do not post updates, it is hard to ever know what happened in their particular case, so these updates are very helpful!
Congratulations on your continued improvements and please keep updating as you notice these continuing changes! I just went back and read your whole thread and clearly you have done quite well on HDT and continue to show improvements with each update!
Art
This is a copy of a recent post by pjokeefe:
I have been trying to order it from overseas as well with no luck and can't find the reason why the companies can't ship it to us. Anyway, I started Thiamine hcl about a month ago with success. I am feeling more energetic, less rigid etc. I am getting my supplies from Chemist warehouse and Discount Chemist. Brands Betamin and Betavit. Unfortunately these only come in 100mg (100 tab for $5 to $9 depending where you buy them) tablets so have to take a handful to get the right dose. I have looked up websites Fruugo Australia, Aussiewell and Swanson Australia. Fruugo say they have Solgar 500mg, 100 tabs for $32.95 plus postage but I haven't tried ordering from them yet as I have a supply of the other brands I mentioned. Hope this helps and best wishes.
This is a copy of a more recent post by pjokeefe in a conversation with RoyProp on 7/30/2018:
pjokeefe
2 hours ago
Great idea Roy. I have just clicked the join button. I watched a Netflix doco "Bleeding Edge" and this talked about, in a round about way, the power to change things in the medical world via the pressure of a facebook group. I can't thank you enough for bringing Thiamine to my attention. Now taking 2000mg, (only taking Azilect 1 mg) and it has changed my energy levels, thinking, tremors and rigidity, all for the better. I printed out info from this forum to show to my new neuro and he was very interested and is going to read up on Thiamine. I see him again in 2 months so will be interesting to hear his take on B1. He is an enlightened doctor, teaches yoga, meditation, holistic living to his PD patients. Not keen on pushing meds and asked if Azilect had made any difference (prescribed by previous neuro). Made me think and I came to the conclusion that I couldn't put a finger on any benefits from Azilect since starting it in Sept 17, apart from maybe very little progression of symptoms. Thiamine has made more difference since I started taking it in May 18.
• in reply to
The following is a chronology of pjokeefe's use of B-1 starting on May 18th, 2018 that I have gathered from other areas of the forum to show as a reply to pjokeefe's original post in this thread. The reason I have done this is because this is a very good report that I didn't want to fall through the cracks and get lost in the shear volume of posts on HU. It is a story of very good progress using B-1 over the past 4 1/2 months and will clearly be interesting to anyone who is considering testing thiamine! pjokeefe's original post is just above this one which I copied and pasted 4 months ago.
Thiamine - Is anyone taking a daily dose that's less than 1000 MG?
in Parkinson's Movementa month ago
Good luck. It has taken a little bit of experimentation to arrive at 500mg. Stops and starts along the way. My symptoms are very mild and as I said my pull test is rock solid.
Thiamine - Is anyone taking a daily dose that's less than 1000 MG?
in Parkinson's Movementa month ago
I have tried various strengths up to 2000mg and have settled on 500mg. I found with the higher doses that after an initial improvement my tremor and rigidity worsened, hence the decrease to 500mg and that seems to be the right dose for me. By the way, both my pull test and walking tests are all normal at this moment.
Great idea Roy. I have just clicked the join button. I watched a Netflix doco "Bleeding Edge" and this talked about, in a round about way, the power to change things in the medical world via the pressure of a facebook group. I can't thank you enough for bringing Thiamine to my attention. Now taking 2000mg, (only taking Azilect 1 mg) and it has changed my energy levels, thinking, tremors and rigidity, all for the better. I printed out info from this forum to show to my new neuro and he was very interested and is going to read up on Thiamine. I see him again in 2 months so will be interesting to hear his take on B1. He is an enlightened doctor, teaches yoga, meditation, holistic living to his PD patients. Not keen on pushing meds and asked if Azilect had made any difference (prescribed by previous neuro). Made me think and I came to the conclusion that I couldn't put a finger on any benefits from Azilect since starting it in Sept 17, apart from maybe very little progression of symptoms. Thiamine has made more difference since I started taking it in May 18.
At the moment I am taking 800mg (8 tablets) a day, slowly working up to 1000mg a day. Will see the effect and go from there. Will try the iherb site as mentioned by kurtpeters. I really should contact the Dr to see if I am on the right path.
I have been trying to order it from overseas as well with no luck and can't find the reason why the companies can't ship it to us. Anyway, I started Thiamine hcl about a month ago with success. I am feeling more energetic, less rigid etc. I am getting my supplies from Chemist warehouse and Discount Chemist. Brands Betamin and Betavit. Unfortunately these only come in 100mg (100 tab for $5 to $9 depending where you buy them) tablets so have to take a handful to get the right dose. I have looked up websites Fruugo Australia, Aussiewell and Swanson Australia. Fruugo say they have Solgar 500mg, 100 tabs for $32.95 plus postage but I haven't tried ordering from them yet as I have a supply of the other brands I mentioned. Hope this helps and best wishes.
Thank you, I will. I am so surprised at how thiamine is working, just slowly working up to a higher dose, but I can see that it is time to contact Dr Constantini for reassurance that I am on the right track. I am fairly sure that it is not just placebo effect as I can walk for miles without tiring and where I live (Berwick, Melbourne, Australia) it is very hilly. I am also starting to smell things I haven't smelt for years. Also thank you Giocas for your wonderful encouragement, you are an inspiration.
I concur. I joined MPT but stopped reading their posts as I found them unhelpful and depressing. So happy I found this forum. I love the discussions on health unlocked, the continual searching for knowledge. Thank you to everyone, I have learnt so much. Now trying thiamine myself, 600mg a day, and find I have so much energy, less rigidity and my tremors are reduced especially under stress. Azilect is my only PD med.
This is a direct copy and paste of a post by pjokeefe on 10/04/2018 that I am adding to the previous copy and paste from months ago to give a better idea of how the B-1 test is going up til now.
Yes, I am experiencing benefits without Sinemet. I take 1mg Rasagaline (Azilect) as my only PD meds. Have now found , after experimentation, that 500mg of B1 seems to the right dose for me, ( 300mg first thing and then another 200mg at lunch). Improvements are better sleep, better concentration, improved energy levels, decreased bradykinesia on affected side, increased gut mobility, (my stomach is now back to grumbling and rumbling and I have increased hunger pangs), sense of smell is returning intermittently. Diagnosed November 2015 with very mild pd that was expected to progress slowly. I also have increased my exercise regime to include fast walking (thanks to John Pepper), Qi-gong, Strength work, Mobility and flexibility free flow movements. All in all my symptoms seem to be on hold and improving.
I wrote to Dr. C. at about 11:30 P.M. Arizona time and got the doctors response at approximately 12:40 AM same night. To get a good response in less than two hours from Italy was somewhat amazing to me. He confirmed my current plan and ask me to keep in touch.
Dear fellow Parkie's I have question for anyone who is sure. Who is Dr Constantine? Is he a rile a medical Dr? Did anyone check his credentials ? What kind of a Dr will prescribe supplements to anyone who asks with out seeing them and in so large does .Is anyone sure if this is safe , before taking such enormous dose ? Ordering it free of charge is nice ,but whot is there for him ? Dr's usually don't offer their services unless they get some benefit from that. Please don't take this as a offense I am just asking to be sure that this is OK. Pardon me for my ignorance .
Here is a link with some information about Dr. Costantini who is a neurologist in Italy. There are at least four forum members who go to see him at his office in Viterbo, Italy and have done very well on his protocol!
This is a copy of a recent post by Kimbo1962 dated 6/12/2018 :
Kimbo1962
2 days ago
I sympathise with you, my hubby had terrible muscle pains and inflammation for months....we then went onto Dr. Constantini Thiamine HCL high dosage protocol, the pain literally went in 24 hours and he has had no more pain or inflammation. He is not on any Parkinson’s meds now ( he did try a few but side effects were not good) he was diagnosed three years ago ( but neurologist said he had for at least 7 years prior to diagnosis). Thiamine most successful treatment for him, so grateful.
I’ve posted my good results here already, but wanted to share this story. I’ve been on the Thiamine therapy for 11/12 weeks with great results including correction of balance. Results so great I was at a bat mitzvah yesterday, where I got a little ahead of myself with the wine, and my balance began to suffer. Interestingly, had I had the same amount of wine prior to Parkinson’s my balance would not have been affected. So my question is has my balance really been corrected?
If I remember right and am not mistaken you asked for updates. In a previous post I stated that after only after 4 days on B1 I was able to effect daily bowel movement after more than 5 years of chronic constipation wherein in I was on an every 3-5 day cycle with overly hard stools and at the same time see a marked lessening of the hand shake. I recently had two dental surgeries one week apart (four implants) that caused me to revert to the previously noted cycle and at the same time more shaking. However, I attribute the temporary setback to the pain drugs, the anti-inflammatory drugs, the antibiotics, and the stress to my body and mental state. It seems I am very directly returning to the benefits of the B1 as the hours pass. I chart everything for myself and the physicians that I deal with. I would advise my fellow forum members to do this as well. Traditional medicine tends to scoff at what they don't know and you need to have empirical proof for them to consider. I am very encouraged overall with the progression of my experiment and hopeful and thankful for finding this ray of sunshine in an otherwise depressing landscape of Parkinson's literature and experience.
This is a copy of a recent post ( 6/20/18) by Xabojuro2 describing their thiamine results under Dr. Costantini at his office:
My trip to Viterbo to see Dr. Antonio Constantini -Sharing info
Xabojuro2
Xabojuro2•2 hours ago•
13 Replies
My trip to Viterbo to see Dr. Antonio Constantini -Sharing info
I will use this post to share information about my recent Dr Antonio Constantini 's visit.
I am a little bit busy at work and will not have the time to write it all up on in one session. so bear with me, please. in the meantime please ask questions and I will do my first answer.
1. Background:-
I was diagnosed in 2013 but I think I had PD a lot longer. I am now on a cocktail of medication to get me through the day. I am also lined up for the DBS. I am 52 and lucky to have access to a good medical team.
I discovered the work of Dr Antonio was randomly searching for complementary and alternative treatments. but what convinced me to go and see him is healthunlocked discussions.
2. How to get there
It will very much depend on where you travelling from but if you are travelling from EU zone, you can travel to Rome on the cheap.
There are plenty of budget airline options including the likes of EasyJet, Ryanair and others.
We flew with Vueling Airlines.
we pre-purchased our ticket trains from ItaliaRail (italiarail.com/) website. The train from Fiumicino Aeroporto took us to Roma Trastevere where we caught the regional train to Viterbo. on the way back we again changed at Trastevere. A return journey for 2 cost us 28€. An Italian friend told us to avoid Sunday travel due to limited services. we travelled on a Saturday.
our train travel was slick, on time and super convenient.
tip: print all you train and flight tickets. do not rely on your mobile. avoid the stress of your mobile going flat when you really need it to function.
tip : take the wheelchair assistance even if you don't need it. i don't need it most of the time but on a couple of occasions i went through security checks whilst going through an off-period. i made life difficult for me and everybody around me.
3. Treatment
the treatment is as described in this forum. basically, B1 vitamin via injections or pills. in my case, I was given a booster shot equivalent to 12 g on my first visit. I then had to wait for two days before I started my course of 3 g per day. Dr. Constantini also recommended that i stop taking the assortment vitamins that I was consuming.
4. Did it work?
Yes But see the section [4]
Yes. here is an extract of an email I have sent to Dr. Constantini commenting on improvements that I have noticed in my first week following my poster shop injection and the subsequent daily dosage of 3g.
" i am feeling really good and here is a summary of the improvements i have noticed;
1. I have so much energy and for the first time I can subconsciously forget that I have PD
2. My body is relaxed and i can do more in the gym
3. I can function in the mornings before the medication
4. I am more cheerful and productive at work
5. family and work colleagues can see the difference
6. I feel that I have the upper hand on PD
7. [removed by the author :-)]
8. I am active in the evenings and can do more (in the past I did not and could not do much after work)
9. thigh muscles are relaxed and can do more stretches in the gym
10. I am recovering quicker from off-moments
11. I am sleeping well (deep solid sleep but still getting up at 4/5 am)
12. On the way back from Italy, I did not need assistance in the airport (i normally I use the wheelchair assistance service)
13. I can walk longer distances
14. I am having a long sustained 'good period'. this is now stretching into the 2nd week. in the past, a good day was normally followed by a bad day).
15. no negative reaction to B1 (taking 1500 mg at lunchtime and 1500 . mg in the evening)
16. got my creative mind back (i write short stories and almost all the time generate new concepts and ideas but lately I felt I did not have much of the creative juices left in my body)
17. i am taking less medication and vitamins
18. for the first time in my life I felt i can smell what i am eating (only once)
5. what is next
At the end of the second week, things changed. I am now feeling not as good as the first two weeks following my initial consultation treatment in Viterbo. Antonio thinks that this could be due to dosage. I also think that maybe my body reacts better to injections. so the plan is as following;
- stop taking B-1 pills for three days
- then 100 mg thiamine injection once a week for 5 weeks
- after 5 weeks hopefully, we will figure out the right dosage
Levodopa i never stop it . thiamina i skiped some weeks in three year, 5/6 weeks at all because sometime i travel, sometime I don’t want to do injections like a child😄 but dr C. in his experience ,say me that restorative effect of thiamine can to last 2 month without take B1. Levodopa no, I take every day without skip it.
As of a few days ago I am off the thiamine again. My blood pressure got high even though I was only taking 500 mg. When I wrote the doctor he told me to stick with a thousand a day but I cannot do it because of my blood pressure. So after stopping for probably week or two weeks I'll start again with 500 mg. If anyone can explain to me why my blood pressure gets so high from thiamine I would really appreciate it. Previously benefotiamine
did it also. It took me a while to find out that was what was doing it . Mary
This is interesting. I did a google and it seems that "high dose thiamine supplementation may have beneficial effects on the blood pressure of individuals with hyperglycemia at early stages, and may have a role in the prevention of further vascular complications."
All indicator is that thiamine has a normalizing effect on blood pressure.
Interesting enough. I have a friend who's blood pressure is "always very high" that he was hospitalized for a month when he was young when doctors was thinking he was going to died. They try to bring his blood pressure down to "normal". This is went he started to get sick. The more normal he was, the sicker he gets. They finally realize that normal blood pressure for him was high for others. Not saying that that is you, but something to consider.
Thanks for writing. I tried a 500 mg pill again and after it this time I felt really sick for couple days. So I think for me I'm not going to be able to take thiamine HCL.
There is a company called Pure Encapsulation they do not put additives into their capsules. I think I might order a small bottle and see if I do better on that.
Have you let Dr. Costantini know what your current results are with regards to the increased blood pressure , even at the "extra reduced dose"? If not you should, especially if you are going to try and take more! It is just an email and he said he will answer all thiamine questions!
Diet and exercise influence blood pressure. We helped a man who was on 5 blood pressure meds. Now, he is off all and has normal blood pressure. He is 87.
Right, may be Dr C or smb else could come up with something to add to the combo Thiamine + Levodopa, so that we start bit by bit generating our new dopamine producing neurones.. The brain has a huge recovery potential.. I am sure this is possible..somehow
yes, i believe that our bodies can heal themselves. i have been using homeopathy, and i have greatly improved my mental & emotional well being, with some physical improvements noted. i have been taking thiamine for a few weeks now, and have noticed improvements. i am going to give it a little more time, before i post the details.
This is a direct copy of a recent post (6/21/2018) by Lucal who just started thiamine therapy at Dr. Costantini's office in Viterbo, Italy:
Good morning to all of you.
I had my visit yesterday with Dr. Costantini and as promissed ,
I'll share my impression.
Dr. Costantini is really confident about his therapy. The visit was very accurate . He stated that he can stop progression of the disease, but can not recover what has been lost. I also had a chance to speak with a patient that has been diagnosed more than 5 years ago, it symptoms seems to be stables at what used to be at that time. That patient was really gratefull to the doctor. What else... since my simptoms are still mild , it started me with 1 injection per week of 100 ml thiamine ( b1). I will visit him again by the end of july. I did not get a lot information about the scientific base, and did not understand very well why should simptoms regress if it's not curative ( he explained something about partial restore of damaged – not death – neurons ). He showed me a lot of success stories. About my personal feelings , I can say that he really believe in what he does , he is confident he can help. I can say after the first injection my left side ( the one more hit by the disease ) felt some relieve , and my mind was for sure more clear and have a better mood. Even if I do not deny that it could be a placebo effect ( which is consistent with the speed of the effect ) , I'll keep doing those injection and visit Dr. Costantini again by the end of july. He said he can bring me back to no symptoms in 3 months. It actually scares me that on this forum, apart 2/3 cases, no one reports success stories in the long run, do you have any reference ? If you have any question , just ask. Sorry for my english , I did not have time to use google.translate......
Not yet, but it hasn't even been a week. Usually two to three weeks gives a better idea and a month or two even better. In any case, he said he will update!
Just came back from a two weeks holidays in Portugal ( average temperature there was 40° celsius ).Driven for more than 2500 km and changed 6 hotels, with two young daughters ( 9 and 11 yo ) and my wife feeling not so well.Not a relaxing holiday. Nevertheless , some days like yesterday I felt worsening of my symptoms that, from my point of view, are not related ONLY to stress, like fatigue and lack of motivations and pain on my left side ( the more effected ). I'll visit doctor C second half of september. Not very happy. Ciao a Tutti.
26 days in: Based on a pull test Dr C wants me back on 3 grams. Still calm, reduced shakes but bradykinesia not improving may need small dose of levodopa. Report in a month
So happy for you, Constance! My husband is starting B1 injections middle of next week (had the run around trying to buy B1 injections). He is also pharmaceutical free, but he is taking MP and vitamins. What kind of MP are you taking and % of L-Dopa?
Despe I’m using 40% capsules taking 1-3 daily with EGCg. They seem to work very well. I believe I have high absorption which is also why the B1 dose I take works so well.
I finally did! McGuff Compounding Pharmacy, CA, thanks to Julie! I had a prescription from our FD, took it to CVS neighborhood drugstore. They said they didn't have it on stock, had to order it. I was waiting for more than a week, and kept getting the same story, "We will have it soon, tomorrow, by Friday," etc. Finally Julie suggested that I could have the prescription transferred to this compounding pharmacy in CA. I did ask for the transfer, they fussed a little, but they finally transferred the prescription. Got a hold of the pharmacy in CA, and they said that the vials will be arriving this coming Wednesday. I had also asked my alternative medicine doctor to get the B1 vials, said he had to order them, I said "Fine," but he still hasn't received them from wherever he had to order them. I was so desperate I ordered some from Germany, too. I have three different sources for getting the vials, but I haven't received any yet!
Thiamine HCI Normalized my swallowing and bladder issues, in the third month on the therapy. Also corrected body temperature control issues. No more arm and a leg pain and weakness. Voice deflection and tone also normalized.
I do not use pharmaceuticals, so cannot comment on that topic.
MB, I’ve not stopped working on that, but it’s a little slower then hoped. My husband and I are involved socially in Silicon Valley and we’ve been reaching out. No luck yet.
Worst case scenario is I purchased tickets to her September 29th show “ a conversation with Linda”. I would hope to deliver some information to her there.
I have been taking thiamine for one month and am just now experiencing major improvements. For the first 3 weeks, I took 3 grams of Solgar hcl per day. A few days ago, I reduced it to 2 grams per day and almost immediately felt better. I reduced the dosage because I felt as if I had plateaued and I had a weird sensation in my right arm and leg -- they both felt as if they were asleep and I felt a little "jittery". I was just diagnosed in May and my symptoms are quite mild, but the thiamine has made me aware of symptoms I wasn't even conscious of before, which I'll explain. Here are my symptoms and what I have noticed:
RIGHT SIDE BRADYKINESIA. This has been greatly improved. My right arm barely moved when I walked, I shaved mostly with my left hand, and I had subconsciously begun texting with my left hand. ALL of those symptoms have been alleviated. My right arm swings as naturally when I walk as my left arm and I am now back to using my right hand as I always did.
MICROGRAPHIA. My handwriting had deteriorated so badly that I began having my wife write checks to pay our bills, etc. It's still not back to normal, but it's much improved. I am now able to write checks again without total embarrassment. I am a semi-retired real estate attorney and was accustomed to notarizing and signing dozens of documents in real estate closings. I realize how fortunate I am to say this, but micrographia is my most significant and disturbing symptom right now. The improvement has been very encouraging and I hope it continues to get better in the weeks ahead.
SENSE OF SMELL. Three months ago, I would have said I have no sense of smell. Now, although it's not good by any means, I can smell some things...like soap, shampoo, and perfume. I think at least some of this improvement might be attributed to Vitamin D supplements -- which is the only supplement other than BI which I've taken during the past month.
FATIGUE/ATTITUDE. I don't know (nor particularly care) if it's "placebo effect" or actual improvement, but I am more energetic during this past month and my attitude is MUCH improved. As a lawyer, I have been trained to anticipate the worst case scenario, and I'm very aware that we have an incurable, potentially disabling disease. I'm also aware that many of you have tried the "miracle cures of the month" before only to be disappointed later, and I'm aware that Dr. Costantini appears to be standing almost alone in his promotion of B1. HOWEVER, he has not charged me a dime for frequent emails to and from my chiropractor and me, he does not sell the vitamins, and he still appears to have a successful medical practice in Viterbo. He's a reputable doctor and he specifically told me, "In patients like you, we expect complete regression of all symptoms, motor and non-motor and stopping the progression of the disease...You'll be fine forever." It sounds too good to be true and I'm not nearly so naive as to believe it completely, BUT I have no doubt that I am much better today than I was one month ago...and I am committed to taking this one day, one month, and one year at a time. At least for now, I am very encouraged. If you are still "on the fence" regarding B1, I encourage you to give it a try. I'll make a new reply to this post after another month.
Jimcaster, Not to worry anymore. " As a lawyer, I have been trained to anticipate the worst case scenario, and I'm very aware that we have an incurable, potentially disabling disease. "
Sure! I am 55 and weigh 193 pounds...down from 232 at the beginning of the year. I should also add that I exercise intensely at least 3 days per week and have adopted a paleo diet, both of which also seem to have helped a lot. I'm not just sitting on the couch popping B1 capsules.
Sure! I take 1 teaspoon of Apex Energetics Ultra-D 5000 each morning. It contains 5000 iu. It just says Vitamin D on the label, but I believe it's D3. It also includes 650 iu of Vitamin A, 125 mcg of Vitamin K, and 1 mg of B6. My chiropractor recommended it. I stopped all other supplements and vitamins except B1.
Thanks...do you know why your chiropractor recommended it ? I too stopped all other supplements except Mucuna, and B1. They were causing intense fatigue, and lowering my bp too much. I kept with the D, but eventually gave it up as it didn't seem to help my fatigue anymore...probably 10k dose was too much. ( I know it can be toxic at high doses)
He recommended it because blood test revealed that I had very low levels of Vitamin D. I probably should have limited myself to just B1, but I had also read studies suggesting D would be helpful and since my levels were low, I thought I'd continue with that...
Jimcaster, Your post was so encouraging! Thank you so much for taking the time to type all that up and post. My husband has been experimenting with B1, trying to find the right dosage. He started with 4g a day, made him feel bad and jittery. He cut back to 3g, still not feeling well. So after being off B1 for a few days, he is trying again with 2g a day, one before breakfast and one before lunch. He weighs 160 and 5'9" so maybe he needs a smaller dose than you. He is 63 yrs old, diagnosed 6 years ago. We are going to research taking vitamin D as well...how much do you take and is it D3?
Good luck to you and your husband! See my reply to Kerrington regarding the Vitamin D supplement. I also cut back from 3 grams to 2, at least for now, and it seems to have helped. I have numbness/tingling in my right forearm and I also felt a little jittery so I cut back. All in all, I am very encouraged...but also very cautious about getting carried away. One day at a time...
Thank you for sharing your experience with Dr. Constantini. I wrote to him for the first time yesterday and already had a question from him in my email when I woke up this morning. I will keep everyone posted as I proceed.
I have two (2) family members who is diagnosed with Parkinson's - my father and my uncle from my mother's side. I started my father on B1 HCI 2.5 weeks ago and my uncle just started 4 days ago. Here are the observed results.
My Father:
- Age: 79 diagnosed with PD at age 61 but showed signs at age 59
- Weight: 143 lbs.
- Current prescriptions: Rytory (Carb/Levo), Azilect, and Donepezel.
- Supplements - Was on Magnesium, B12 and Niacin. Stopped since starting B1 HCI. He is still on Alpha GPC to help with his dementia.
- Started on 2g (2 x 1g) per day on June 10th.
- Observations - I haven't seen my dad for since before he started his B1 because of children's events. These are the changes I observed over a 5 hour visit.
- Swallowing - He had problem drinking water and would chock/cough on it. He no longer cough.
- Takes 2-3 minutes just to get started in taking his pills. He now takes his pills immediately without coughing.
- Not sure of his constipation. He said it has improve. Can't confirm because of his memory and dementia.
- It use to take him 1-2 hours to eat a meal usually and would not be able to finish it. Now, he finish just a little after us. Again no choking or cough now compared to before.
- He normally complaints about weakness, sourness, etc about 30 minutes before his medication - med not lasting. He would not be able to walk or function properly till an hour after his medications. Now, he doesn't complaint. In fact, my mother forgot to give him medications for over 2.5 hours. He was still functioning as through he had taken it. I didn't even realize he was passed his med time given the way he was moving around.
- He usually falls asleep all the time - middle of eating, while someone is talking to him, while his grand children is play around him, etc. This time around, he did not fall asleep during dinner. He watched his grand children play. He gave a real smile. He had facial expressions.
- He usually has sleep disturbance - hands moving, jars moving, etc. During his nap, I didn't observer any of those. He had a more calmer sleep.
- I know this is not a placebo effect because of his dementia.
- It is still early, but I am hopeful. At a minimal, the B1 HCI is making the C/L more effective. Best case is what everyone is saying, that it halts the progress of PD.
- Next Steps: If things continue to improve, I will ask his neuro to reduce his medication and start him back on his supplements.
My uncle:
- Age: 63
- Weight: 210 lbs (?)
- diagnosed at age 61 with signs since 58 or earlier.
- Started 6/22/2018 on 2g (2 x 1g). I asked him to increase to 3g/day. Not sure if he started that already.
- He is a bad case. He falls regularly as in 4+ times a day. He is breaking almost everything from blinds, shower doors, chairs, toilet seats, had to stop driving because he keeps damaging it, etc.
- As noted by him, his legs feel stronger. Not sure if his falls has decrease or not.
- It's only a few days and dosage is too small for him. I have the most hope in B1 helping him because of his age and relative early in PD diagnose (within 5 years) although his is a bad case.
_--------------------
July 27, 2018 - update
My father's condition slowly got worst over the past 2-3 weeks. So slow that we thought it was because of his toe injury. I have stop his b1. Will restart after a week with 500mg 2 times a day. Which is 1/2 his starting dosage about 2 months back.
Thank you Art. I wish they tell you which spies of the bacterias they use. There are many species of Lactobacillus and Bifidobacterium. Thankfully, these two bacterias are in all of the probiotics that is OTC in the US.
I have been looking into which bacterias give the benefits and when to start my father on it. I haven't because of is problem with swallowing and the pure number of pills he has to take. Now, with the B1, I should be able to start him on it shortly after his doctor reduces some of his medications.
You may have missed this sentence in that article :
Half of the patients daily received 200 ml milk enriched with four probiotic bacteria Lactobacillus acidophilus, L. casei, L. fermentum, and Bifidobacterium bifidum (approximately 400 billion bacteria per species), while the other half received untreated milk.
Yes, B1 is helping some, but there are many (some who have emailed me) that tried and had adverse reactions including elevated blood pressure and allergic reactions or no positive benefit. People should continue to pursue ALL solutions not just B1. B1 is PART of an answer. It is not THE answer. Keep your mind open and keep researching and keep moving. Joe
Fantastic news! Hope you experience further improvements.
Hopefully, I will receive the B1 vials today so my husband can start the B1 protocol tomorrow. According to Dr. C. he's got to have two injections weekly, but don't know yet how long he needs the injections before he switches to oral B1.
This is a direct copy of a post by Lionore on 6/26/2018 :
I can’t thank you, the members of this community, enough for helping me address the symptoms of PD. I was diagnosed in 2015 but had left hand tremor for two years prior and a gradual loss of smell since around 2003. Yes I know that PD is progressive and incurable. So is the aging process; I am 71 after all. BUT, I feel better than I did three years ago when my well respected MDS told me that he was sorry with quite the woeful look on his thirty something face. Well, I decided to not curl into a ball and whimper. I took the advice of you folks:
Exercise, exercise, exercise, all kinds, mix it up and have fun
Drastically eliminated sugar, alcohol and processed food, eat mostly organic, mostly plant based diet, lots of water
Started, one by one, NAC, CQ 10, vitaminD3, green tea extract, turmeric, B1, magnesium
Pushed back when Dr wanted to start me on a dopamine agonist, got on Sinemet and rasagiline
Started Qigong
Connected with a spiritual group
Worked on eliminating stress (retired finally two years ago)
Reminded myself about all that I’m grateful for
These symptoms that were pretty troublesome have all but disappeared:
Toe curling
Pains in my left foot
Poor sleep
Inability to straighten my left arm
Extreme fatigue
Difficulty swallowing
Muscle spasms and Charley Horse on the affected side
Stooped posture and stiffness while walking have much improved as noticed by people close to me
Tremor is still on one side and is much improved.
Yes, I know that the first five years are the honeymoon period. Don’t we all deserve a honeymoon? I read this board every day, and feel great fondness for all of you who post and respond in an effort to connect, learn, and help one another. Thank you.
A-D,
You clearly got benefit with a very low dose, so it seems you may have to fine tune your dose or deliver it more slowly during the day. One possible way you could do this is by emptying a 100 mg capsule or two into a sweetened drink like Gatorade since the powder is bitter, say a 500 ml bottle of Gatorade and drink this throughout the day to give a slower release of the thiamine? At a minimum, you could drink half the bottle with breakfast and the other half with lunch? In any case, since you did get benefit, it certainly seems worth experimenting with the low dose and definitely discussing with Dr. Costantini again!
One of the side effects that they mentioned is shortness of breath. I had shortness of breath, however I attributed it to my high blood pressure. Also at times I did feel some anxiety, and usually I am not an anxious person. I have been taking melatonin 20 mg before I go to bed at night for a few months now, it seems like it helps with sleeping. But my stomach feels upset, and I started having heartburn too, something I never experienced before. So I don't know what is setting that off. I'm really stumped. Mary
Mary, as you may know, most PWP experience anxiety and PWP who are tremor dominant, which I am, experience more anxiety, which I do. I guess the only way to find out is to discontinue the B-1 and see if you less anxious, than resume and see if you're more anxious.
What I have noticed that I become anxious when my blood pressure goes up, my pulse rate goes up, and my stomach and my intestines are upset. I start doing the calming breathing and that helps. Thank you for writing Mary
Some people experience stomach upset with melatonin, but on the other hand, some people experience gastro relief with melatonin. It seems strange because now they have determined that melatonin is produced in the gut in much larger amounts than in the pineal gland. You just have to try it and see if it is for you or not. You can always discontinue for a bit to find out if it is the cause or not.
Thanks Art, I have been trying that. Sometimes my stomach is upset and sometimes it's not so it kind of reflects what you are saying. And I misspoke, I do not take 20 mg I only take 10 mg a night. Mary
Sometimes I get a little stomach upset if I take melatonin close to magnesium or if I take an herbal supplement called skullcap which has anti inflammatory properties, so I have given up using skullcap in favor of the frankincense derivative boswellic acid in the more effective forms such as AKBA and other extract forms.
Even though I am Tremor dominant, my Tremor is not too bad so far. I have noticed my rigidity is worse, trying to put my arms and hands behind my back. The other thing I have noticed when I stop melatonin it stops the heartburn and the feeling of upset stomach and intestines. Somebody on this list mention that melatonin can affect you that way so maybe I'm going to need a little breather from it. I was also thinking that maybe its the additives in the capsules. I don't know if those additives really affect you or not.
Hi A-D,
I misunderstood what you were saying. I thought you were saying that you saw benefit at very low dose, but actually it was at 2 grams per day. Have you tried going to 1.5 grams or 1 gram per day? Because you start to develop problems after several days, the 2 grams/day seems to be too much for you. The fact that you got benefit, seems like it would be worth the time to see if a lower dose may work for you......just not a couple of hundred mgs. Dr Costantini said too low of a dose will do nothing at all and too high can worsen symptoms.
No, I am taking Vitacost vitamin B1 as thiamine HCL. It has gelatin microcrystalline cellulose vegetable stearic acid and vegetable magnesium stearate. It has the same ingredients as thiamine HCL that other people take although they are different brand. Mary
The following are three different posts by ion_ion that I copied to this thread. The first one was posted in early April and the second one was posted in early May and the last one was posted June 28th. As you can see from these posts, it can take a little bit of time to get the dose optimized, but if you have the patience to do that, it may be worth the effort!
1st post:
I started Thiamine HCL on 3.24.18, 2g a day, 1g in the morning and 1g at 2pm. Yesterday was the first day I noticed some improvement including the tremor. Today was good, too.
I'll see if the things keep improving or is just something temporary. I did a B1 blood test but they told me the results will be in 10 days. I did vit D and I was low - 62, even I was taking 1000IU a day. I'll increase it to 2000IU a day.
2nd post:
Partially helped with tremor but helped with mental and physical energy and eliminated the anxiety and depression and constipation.
I emailed Dr. Constantini and he told me to stay on this dose for now.
3rd post :
Diagnosed a year ago, symptoms started two year earlier. I have RH tremor only. I went down for few months after diagnosis but I took a positive attitude, started exercising and in March started Thiamine. Also I'm exercising how to ignore/control stress. All of these helped a lot, especially Thiamine. I also take 2000UI/day vitamin D3. No other meds. I have days with almost no tremor and found out 1.5g/day thiamine being the optimum dose.
• in reply to
This is an update post by ion_ion on 08/04/2018:
ion_ion
ion_ion
16 hours ago
It does work for me, boys and girls! I'm much better than a year ago. I do not take anything except Thiamine. The c/l and the amantadine ,two motion disorder doctors prescribed last year, already expired and I threw them into garbage.
Yes, if my dose is a little higher I get skin rash on my abdomen and maybe the tremor comes back stronger. I adjust my daily dose between 0.5-2g/day, sometimes with 1-2 days breaks based on feeling and the intensity of tremor. No more constipation, no more urinary urgency and frequency, no more anxiety and depression, no more extra saliva, very good sleep and much less REM with ugly dreams and the most important - CLEAR MIND and thinking so I can do my job as a software engineer. Also the fatigue is gone. I have a spring gun to exercise my hands. Last year I could not do a single push-now I can do 50. Do I need confirmation by scientific research!? Yes, it will interesting, but otherwise I don't give a shit!
I knew the value of vitamin D3, and was taking 5,000 iu. My blood test suggested I take `1,000 iu of vitamin D3. I take 10,000 iu in the summer and 20,000 in the winter.
This is a copy of two posts by KMay, one on 6/28/18 and one on 6/29/18 about thiamine as part of her regimen:
First post:
KMay
7 hours ago
I've been taking Restore Gold since September 2016. I began taking it 10 days after my Parkinson's diagnosis, and 5 days after starting Sinemet, and seem to be doing well. I'm tremor dominant, and really don't seem to have progressed since diagnosis. My neurologist has told me that he would never know that I have Parkinson's. I also take vitamin D, vitamin K, and Ubiquinol, and recently began taking thiamine.
I don't want to give anyone false hope--it may just be that I've been slow to progress, and the so-called honeymoon period will end with a bang one day. I firmly believe in the "old saying" that it you've seen one person with Parkinson's, you've seen one person with Parkinson's, so what works for me may not work for someone else. I just wanted to share my experience.
I also want to thank everyone who has worked so hard to gather the information in regard to thiamine. It sounds promising!
Second post :
I'm currently taking 2.5 grams per day of thiamine hci, and have been for a month. I feel that it has really helped with stiffness, and I just feel better in general.
Noticed right hand shook when I became angry, annoyed, anxious
Began with sporadic hand, thumb, toe,foot spasms.
7 yrs ago rt hand weakness, mild, persistent tremor, thumb tremor, cd will any right hand finger to move...weird. I found it interesting, but worrisome...
During the 10 yrs I researched, took various key supplements which I believed helped, but eventually not enough...btw, I've been a vitamin taker, healthy organic diet, no meat, or poultry for 20 yrs.
2-3 yrs ago heralded in loss of rt hand dexterity, slowness, in ability to rise easily from chair, tremor increased, much anxiousness, minor balance issues, worsened shoulder stiffness, and rigidity, total fatigue. No matter how much I walked, exercised, each new day felt like I was starting from the beginning.
FAST FORWARD TO 12/2018 WHEN THIS SITE IS FOUND
I started with 50 MG 3X DAILY ALTITHIAMINE & 1/4 tsp, 3x daily MP 4 to 7 % dopa
Seemed to be helping some with energy, & tremor
A month or two later, 3/2018 went on 2GMS THIAMINE HCL, quickly WORKED UP TO 2 GMS, 2x daily.. No side effects, also increased MP powder to 1/2 tsp 2-3 x daily. By May 2018 NOTICED improvement in balance, stiffness, rigidity, pain, while MP helps more with tremor & anxiousness.
Still biggest hurdle, little energy persisted.
TOOK B COMPLEX with minerals, coq10, D, cur cumin, with B1 in am. An hour, or two later wd nose dive.
Tried 3gm B1, tried 2gm, took off for a few days, got worse,
Resumed 4 gms, felt better, except continued with huge fatigue.
Tried stopping all supplements except b1, & MP.
Initially helped, then more fatigue.STILL , THEN stopped... KEPT OFF OTHER SUPPLEMENTS
Tried D with the b1 and MP, HELPED with energy for 2/3 days.
JUNE 30, 2018
By now reduced b1 to 1GM, 2X DAILY, and 1 Magnesium, L THEONATE along with MP. SO FAR IT'S WORKING...ENERGY LEVEL MUCH IMPROVED. KEEPING FINGERS CROSSED. When I stop taking b1, and mp all issues resurface. Foot still out,right hand fine motor is so so.
I still take the other supplements, but onl y once/twice weekly.
That is a really good and useful report and great news on the improvements !! I like the way you are slowly and methodically trying to dial in your dosage for best effect! If you don't mind saying, what is your height and weight?
I started B1 2 weeks ago. One gram in the morning and one gram in the afternoon. I feel more energy especially in the morning. Also noticed more clarity in my thoughts and better focus. I don’t know if this is a placebo effect or not. If I could arrest the progression of my disease I would be so happy. I’ll let you know how it goes...
I understand the interest in B1 and a person with 10 years of Parkinson's, I would love to believe it is a magic bullet. I cannot find the evidence to back this up unless somebody is deficient in B1 because of Diet. Somebody quoted "weareparky" research. I met them in Rome and told them that their resaerch was having a big impact. They were surprised as they themselves stated it was only usefull in certain circumstances and their "research" was not scientific. So I spoke to the leading authority on this in Rome Fabrizio Stocchi - Again he said that there was no concrete reason or research. I then checked with Dr. Anna Zecchinelli (MIlan working with Prof Pezzoli and got the same answer). I am sure that my less than enthusiastic response will be greeated with a hail of dismay. I work everyday with Neurologists and people with Parkinson's (also with Parkinson UK). I will translate what DR Zecchinelli said. She is a Nuerologist I hold in high esteme. If it works for you, great, take it and carry on but it should be added that Diet and CORRECT excercise are far more Fundamental.
I bet the neurologists you hold in high esteem prescribe a lot of conventional meds. . . Dr. Costantini is also a NEUROLOGIST whose only concern is his patients' well-being, not $$$. Would your neurologists offer their services for free???
Hi Quintin can you please expand a bit on what would be CORRECT exercise for PWPs some baseline guideline will be really helpful thanks for your support
' She is a Nuerologist I hold in high esteme. If it works for you, great, take it and carry on but it should be added that Diet and CORRECT excercise are far more Fundamental.'
Indeed, I am agreeing with you. As long as you do not ignore all the things research has already proven. We estimate that about 18% of people get some or good benefit from B1, not exactly scientific but worth a punt but Excercise, diet and lifestyle must come first.
Hi Amy... as I said 18% is not a scientificely valid figure. As a Director of a major clinic (in Italy) and as a Parky we always ask about B1. We have about 2000 guests per year. Our research is done with Oxford Brookes University but we have never reearched this (control group and sample size). But of our guests, about 23% take B1 and 18% report a benefit. It is strange as GioCas correctly points out. Some people have a major benefit and most none at all. Horses for courses!
This is a copy of a post by 1953bullard on 07/02/18 :
1953bullard
6 hours ago
It seems to have helped me with my brain fog, urinary Incontenance and constipation. My only other problem is tremor of right hand, I can’t tell if it’s better but I’ve been doing this for about a month. I do feel better overall
• in reply to
This is an update post by 1953bullard on 08/04/2018 that suggests the tremor is improving!
I’ve been on B1 for a couple of months. 2g per day. My tremor is still there but better. I’ve had a couple people respond that they noticed I’m hardly tremoring. Also no constipation at all and my urinary incontenance is completely gone too
8 likesReply
• in reply to
This is a direct copy of an update by 1953 bullard on 11/20/2018 :
First neuro visit after HDT protocol started
1953bullard
1953bullard•
an hour ago•9 Replies
Went to my neuro today for first time since starting B1. He asked if I was doing anything different because I was doing so well. I told him about the HST. I was afraid he would say it was hogwash, but no, he took down Dr Cs name and said he was going to google it and maybe start recommending the protocol to his patients! He. Said tremor much improved, awesome gait, very little cogwheeling compared to last visit. That’s in addition to no constipation and no more urinary issues.
How long does the 200mg B1 last you? Maybe instead of taking it every day, you should take it every other day or every 3 days? Since you already working with Dr. Costantini, you discuss with him about stopping other supplements and see what happens.
Also, I don't know if you can use injections where you are, but something else to explore as well as other type of B1.
Good Luck and keep us updated!!
This is a copy of an interesting post by cincinnato on 07/02/18 describing how Dr. Costantini got to see one patient's Datscan from 5 years ago and one recently showing that they were similar suggesting that Dr. Costantini may be correct in his theory that B1 may halt disease progression.......at least in one person.
Dear Giocas, I frequently see Dr. Costantini who follows many of our clients. His enthusiasm is contagious and what results! Patients who seem to have nothing, motor and non-motor symptoms impressively reduced and often completely regressed. High efficacy at any stage of the disease. The disease that has not progressed in any patient for years. Exceptional results in all patients, dependent on the degree of disease progression, previously impossible to obtain. He recently informed me that he was finally able to see the result of a patient's datscan (carried out last month), which is comparable to that made 5 years earlier. This confirms that the therapy stops the progression of the disease. He says that it is a spell to see things and understand things that nobody else has seen and understood (he also says that the sentence did not invent him but that he read it on google's little words)
"... may halt disease progression." In some people. I don't get it. Some people report dramatic results in as little as a week or after a couple weeks and I've been on it for 3 months and got zip.
Two weeks ago, I began taking 1.8 grams of Thiamine (GNC 300mg/capsule) 3 caps in the morning and 3 caps at lunch. Coincidentally, my neurologist started me on Comtan to go with my Rytary and Azilect. A week ago Tuesday I went home from work with serious stomach cramps and GI problems like I have never experienced before. Stayed home from work Wednesday as I could not stay out of the bathroom. I had stopped taking both Thiamine and Comtan on Tuesday, and began to improve Wednesday evening. Went to work Thursday a little late (mid morning) but not quite out of the woods. I don't know if it was Thiamine or Comtan, but believe it was one of the two.
As you can see from this thread, nobody has reported diarrhea that I have noticed, however the Comtan/Entacapone is noted for that side effect. You will have to scroll down about a third of the page for the side effects listing.
Really good news from my husband. Dr Constantini has confirmed he’s definitely improved in all aspects in last 2 months. Do you know how long his oldest patients have been ie have they been treated for 5 yrs and have they remained stable ? So impressed!!
Munchybunch, please post an update when you get the chance as it has been about a month since you posted that. The longest that he has mentioned is in the 5 to 6 year range on thiamine.
So on this thread I count about 28 reports from people with more than a month. Of those 7 people report excellent results: BassofSpades, Kia17, Cons10, tarverusmc, junax2017, wriga, and jimcaster. The poster above who actually works with scientists and doctors said that at the clinic where he is active about 20% of folks report thiamine is helpful. Several people have emailed me that are not posting on this discussion and who saw no benefit from thiamine and all of them were in direct contact with Dr. C.
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Do you think people who tried thiamine with no benefit would post here?
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I take thiamine and believe it has a role to play, but I beg people to understand HOW it MIGHT be working and then understand what OTHER supplements and lifestyle changes may be even more helpful especially when combined with thiamine.
Some of us are still trying to determine the correct dose of thiamine to take. There's not much use posting results until enough time has passed to report whether it's working for us or not.
Sorry Gio - Just saw the question. I tried Benfotiamine initially not thiamine HCl. Thiamine HCl did not increase my blood pressure.
You have a track record for teasing out interesting papers on other subjects. I have tried to call for assistance on answering the question why Thiamine might work but only get so far. Any help you can give ?
Sorry but it's hard to know to whom you are replying on this forum. Are you asking Gio or me?
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Assuming you are asking me, that is the single biggest problem I have with thiamine. I have searched high and low and can find scant evidence to support the "why" as to how thiamine may help. At the same time I am a strong believer in real world results, and there can be no question some people are seeing a benefit. Why continues to bug me to no end because I can not find a good answer.
I understand that. My husband was exactly the same. He wanted to know why, how and all the evidence etc. I just said lets do it and we ve never looked back!
Hi Gio - If I am losing you than that is proof to me that I am doing a poor job of explaining my message. Let me try to be as simple as possible. It is my theory that neurological diseases are like a leaky roof with many holes, and thiamine fixes only one hole. People with Parkinson's need to fix the other holes as best they can and there are other supplements and lifestyle changes that may be possible. Thiamine is only helping 20% of people who try it because it helps those with lesser symptoms and who are in earlier stages of the disease more than it helps people in later stages or with more severe pathology.
i cant believe the number of replies to this post! anyway, heres my update....
i started with 3 gms thiamine/day per dr c's recommendation, and after 2 reductions in dosage (due to worsening of symptoms), i settled on 1 gm/day - 500 mg at breakfast and 500 mg at lunch. it has been 3 weeks at that dose and i have noticed the following---
before thiamine - distonia of feet about 4 am (cramps in feet and curling under of toes),the only thing relieving it was a half dose of c/l.
after thiamine - no distonia at all, no need to take dose of c/l until i get up at 6 am.
before thiamine - when walking up stairs, i would be unable to slow down and felt like my legs were being propelled by an unknown force.
after thiamine - can walk up stairs normally.
before thiamine - when kneeling on floor/ground to do things like washing floors or gardening, i was unable to stay in that position for more than about 10 seconds. i felt that unknown force again forcing me to stand up abruptly.
after thiamine - able to stay in a kneeling position for several minutes.
i had been showing improvements with homeopathy and mannitol, but that was over a longer period of time. the improvements since taking the thiamine have occurred in only 3 weeks.
jujulini, "i cant believe the number of replies to this post!" 278!! Where would we be if easilly hadn't figured out to put us all on the same thread? Let's start a pool. I predict 400 posts.
This is a copy of a post by Imdefeated on July 12th 2018 discussing her husband who is taking thiamine and she was replying to a doctor who had started a discussion about thiamine :
Imdefeated
10 hours ago
I appreciate your input and respect your years of experience in the medical field. My husband has been on the thiamine protocol for @ two months now, 1500mg x 2 daily. It works. He has been able to reduce mirapex significantly. You know, having Parkinson's yourself, that tremmers, gait, stiffness, ability to smell and taste ect. Cannot be controlled by convincing yourself you don't have these parkins symptoms. My husband's symptoms have improved dramatically, I am a wittness to it. He has been on the tablet form and will start injections next week. We have excellent medical insurance but will have to pay out of pocket for the B1 injections, we are happy to do so.
Have faith in this, there certainly isn't any harm in it.
11 likes
This is a copy of a post by justhavefun2 on 7/12/2018:
justhavefun2in reply to easilly
13 hours ago
All I know is that I started taking B1, B12 and B Complex a month ago at my physicians advice and didn’t think that it was really helping me too much until I ran out of B1 for a couple of days. I had such bad functionality that I am never running out again. Placebo effect? I don’t care... I just don’t want to feel like that again!
My hubby diagnosed in 2015. Rigidity, tremor in right arm, unable to swing arms when walking. Unable to turn in bed,get off chair, constipation, freezing in doorways. Horrendous muscle and joint pain which became the most debilitating. Tried levadopa came off due to side effects, tried rasagilline came off due to side effects . Just been taking mannitol and macuna pruriens, vitamin d and vitamin b. Then I saw on healthunlocked the Dr.Constantini high dose thiamine...was kindly given docs email...emailed him about Hubbys pain and got a response within two hours. Started on really high dose of 6 x 500mg in morning 6 x 500mg in the afternoon. The benefit was within 48 hours. Hallelujah the pain was gone. Not only that but the muscles relaxed and not so rigid, able to turnover in bed...get off chair. We reduced tabs to 3 in morning 3 midday after 1 week. Decided to come to Viterbo for a one to one and saw doc today. Started first 100mg injection. Response immediate, facial expression not so set.... overall feeling even better. Will continue for five weeks on injections then back on tabs 4 morning x 4 afternoon. Doc was so kind and thorough and Erika did all the translating. He did all the tests to see where hubby was on the scale. Very happy we came. Have the injections for next five weeks. saw all the patient videos of before and after,what miracles happen with the protocol was amazing to see. Can’t thank Doctor Constantini and the entire team enough. The support given from my first email has given us hope and light at what seemed a very dark tunnel. The support given here deserves a huge thank you as well, without you I would never have heard about Dr. Constantini.
57 y.o. Was DXed in 2006. On LD/CD/ENT 75 mg x 3x, Amantadine 100mg x 2x. Two months ago started Thiamine HCL 2g per day. Pro: Reduced tremor, no stiffness, easily turning in bed, shorter offs. Con: none.
Great and fast results on thiamine...........congratulations!!!
Art
Day 52 Dr C has stopped my Thiamine for “at least a week “ Three problems worse bradykinesia, intestinal and drooling. Had been on average of 2.5 grams and started doing well. The cumulative amount is too much
• in reply to
Further confirmation that getting the oral thiamine dose just right for each person can easily take three months or more! Dr. Colangeli mentioned to me that email patients take much longer, on average, to get their dose adjusted correctly, but also, I think this is a good reason why Dr. Costantini's preferred method is the intramuscular injections as those results seem to be more consistent and they can often times start to be seen in just hours!
Folks like RoyProp who actually hit the correct dose on the head the first time, seem to be the exception, not the rule.
Art
• in reply to
That dose was recommended by Doc Costantini after review of my symptoms and treatment at the time.
My apology if this is a dumb question, but I assume the vials for injection require a prescription? If that's true, is that so in all countries, i.e., is there anywhere I can buy it without a prescription?
If you live in the USA, FDA would not allow B1 vials import from anywhere. I live in the USA and had ordered B1 vials from Germany. FDA prohibited UPS delivery. I got credit for the vials, but I still had to pay UPS transport cost.
So, doesn't that mean that the company that shipped the vials labeled the outside of the box as to what was in it, i.e., how does the FDA or customs know what's in a UPS package?
The company filled out a customs slip describing the package's contents. In the US, B1 injections are prescription only and since the import vials were not medical prescriptions, they (FDA) did not allow delivery.
We decided to try b1 out of desperation as my husband (53) was gradually getting worse. He was on sifrol and that caused really bad side effects eg foginess, apathy , depression. I read about dr c and realized we had nothing to lose. At Xmas time last year my husband was about to have to stop work as he just wasn’t coping. Things were bad!
Forward wind 5 months and I have a new husband is all that I can say ! Energetic, sharper mentally , better mood etc. The changes have been really noticeable. The funny thing was that our neuro decided to put him on Madopar which didn’t work either! He said to up the dose again and again and my husband refused. When we went back to see him recently he was amazed how well he looked and said he couldn’t believe it. He seems stable too. I cannot believe the change in him.
Is he taking Thiamine orally or by injection? How many mg a day? Any other things that he is doing or taking as suggested by Dr. C? How long since diagnosis of Parkinsons?
He takes 4g a day divided into 2 doses. He also takes 3000 mgs of vit c, 3000 of vit d, 200 mgs of selenium and lots of fish oil. He takes tablets. He was diagnosed 3 years ago but honestly he looks better now than he did 5 years ago. For him I think the biggest changes are in non motor e.g. mood, increased involvement. Our teenage daughter says he s joined the world again!!!
That is such great news about your husband munchybunch!!! I am so happy that the thiamine was able to do so much for him and thank you for posting his results!
Congratulations! I'm very happy for you and your husband. 😊
I would like to make a comment on this post that may not be apparent to other forum members. Each day I receive notifications of people who select the "Follow Post" button for posts that I have made on this forum, but this post is far and away the most followed of posts I have put up, as in one to five new followers per day. That in itself is not extraordinary for an active post, but what I find interesting about it is the fact that most of these followers are not regular posters that I see each week posting on this forum. Many are members who I have never seen before. Unfortunately I can only go back about a day and half on my notification pages so I can not go back to count how many people are actually following this post, but that would be interesting to know! Does anyone know of another way to find out how many members are following a post? The reply count is always shown right on the original post, but not the follow count?
I think following this post is one of the first steps that people might take who are seriously considering taking thiamine and judging by the number of followers for this post who do not appear to already be taking thiamine, the number that will be taking thiamine may grow considerably!
thats so funny, because i was just thinking this morning---i wonder how many people in our group have been helped with thiamine. it would be interesting to know. and i thought- i guess you could count them on this post to see, but who wants to take the time to do that.
its a shame, because if thiamine was a pharmaceutical and a profit maker, it would be all over the news. but, alas, nothing because the sponsors of the news are the drug companies........ its never about peoples health, only about the money.
I believe you can buy from Pharmacy Only products.
Where I live you can because I bought their own Magnesium. ‘Albion Human
Nutrition.’..I haven’t tried any other product but expect they produce the complete gamut of supplements. I did buy B1 from a Warehouse as I was out of town when I started Dr C protocol and since stopped as it did not sit well with me ....I intend to try again on a smalller dose now that I’m home again but I shall be sourcing it , hopefully, from my own pharmacy which stocks the Albion brand. Kept behind the counter...not on open shelves for everyone to handle.
I think pulling this data together in a concise, easy-to-read format is critically important. That could be done with the spreadsheet located on Google docs. Down the left-hand column we have people enter their username and across the top row are set of codes that capture the relevant data (age, sex, date of diagnosis, symptoms, supplements, drugs and dosage, stage of progression, date and dose they began thiamine, outcomes, whatever.) The information can't be distilled from prose statements. It has to be "fill in the blanks" (using numbers on a scale of 1 to 5 or 10.) Signing into Google docs is as easy as signing into anything else.
MB, that is a great idea to use Google docs or sheets to consolidate the informatio. Is there a way to limit editing to only the logged in users data?
Does anyone know about an online database that could be set up similar to MB's idea? Each person would have to register and log in to post their information.
I had envisioned an open Excel spreadsheet where we all have the same password that would allow anybody to enter their own data. We are the only ones who know about it and I believe we could trust that everyone would use it in good faith.
The current thread has well over 300 posts and will hit 400 within a couple weeks. I would guess there's at least 50 to 100 people using thiamine on this forum. That number will triple.
Having the thiamine data quantified and in one place would better inform everybody as to expectations, dose, duration and potential adverse events/side effects.
Every day somebody asks for Dr. C's contact information, what the starting dose should be, and all the other basic questions.
Every time someone starts a new thread there's a banner beneath it that says, "have you had a needs assessment?" If we could get the HU administrator to put another banner under that, we'd be home free.
I will try to contact a HU administrator, explain what we want to do, it's importance (and that it may be a feature they want to avail to other forums) and ask if they will put a notification beneath all new threads announcing our effort, because otherwise, I don't think it'll work as anyone who comes onto the forum a day after the spreadsheet is posted, won't know about it and so the same questions and discussions will continue to re-occur.
I suggest getting in touch with Laurie Mischley, who is doing a survey of what works for Parkinson's. Upon completion it will be published with a statistical analysis. Thiamine is not currently included and it certainly should be. Contact and study info here: bastyr.edu/research/studies...
When I tried to contact Cpt Helen that RoyProp had suggested as an admin to contact as far as pinning the "who is taking thiamine post" to a front page for easy access, she never responded.
I must say for the first time in 3 years I feel excited about our future. A year ago our life was grim ! Now my husband is so much better we can hopefully look forward. I really can’t understand why anyone would not try the b1protocol. I’m so over doctors just pushing medicines all the time which make you feel even worse!!
My neurological picture is basically stable after three years and also improved in some respects as documented by the tests. There are daily ups and downs due to the assimilation of Ldopa and due to work stress or cold weather, but I would be almost normal if there was a more stable LDopa to use. I have written many posts and I prefer to let others talk now.
Still not able to take thiamine. Took one pill 500 mg two days ago and again one day ago. My blood pressure is Sky High 200 / 100. Can't sleep and feel very uncomfortable. Both times took the pill in the morning.
I was diagnosed with the condition in 2013. I am on the usual medication and follow a regime of fitness and good living to Help me to deal with the symptoms. I inject 50 mg per week. My condition improved drastically. Along with the usual medication, I am now 'almost' leading a normal life. the most remarkable change is the disappearance of off-times.
The dose that is working for you is really interesting to me because it is fairly low compared to what some are finding effective for them. Also the fact that you are only taking one B-1 dose per day instead of the two doses per day that other PWPs are using.
This seems to add further to the idea that some people are more sensitive to thiamine while others are much less sensitive and adds further to the idea that there is no standard dose when it comes to thiamine....one size dose does not fit all!
Ironically, I am on vacation in Norway and I forgot to take my normal afternoon dose of 1 gram yesterday. I had been happy with the results at two grams per day, but I felt especially good last night. It was only one day, but I may experiment with a lower dose just to see. I'm now at 2 months with thiamine and about 1 month with Tru Niagen. So far, so good.
I was just diagnosed in May, but I can type and use a computer mouse much easier now and bradykinesia on my right side is much improved. All symptoms are virtually nonexistent except for micrographia and poor sense of smell.
My husband has just finished his 8th B1 injection- a month long therapy.
Here are the results from 100mg B1 injection x 2 week.
First injection: he called me at home and told me "I feel NORMAL again!" He came home from work and started working in the yard which he hadn't done for months! I believed his executive function was restored and was so thrilled.
After the first injection, I have noticed partial improvement with bradykinesia and R arm occasional swinging. His mood seems to have improved along with his energy although I still think there is a lot room of improvement. I videotaped the pull test (still taking a few steps backwards) and getting ready to email Dr. C.
After my first email to Dr. C., my husband had an Adrenal Fatigue test and was diagnosed with Adrenal Dysfunction. Doctor prescribed low dose of testosterone/DHEA/progesterone, so not sure if his mood improvement is due to his hormone therapy or B1.
He also started taking MP extract (Barlowe's 650mg, 40% L-dopa, 2 capsules am and 2 pm). I have also added vit B3 to his vitamin protocol which Dr.C. said it was fine to continue along with B1 injections.
Forgot to mention that besides his RH, RF and left thumb tremors, now he has LH tremors, not just his thumb. However, the tremors are only hand not arms. They are intermittent and don't last but a few seconds. He is on Mannitol, too.
Hi Despe,
Thank you very much for the updates!
I'm glad your husband is still seeing good benefit with thiamine , but based on his pull test, it sounds like there might possibly be some room for improvement on his dose. Please keep us posted on how this progresses for you and your husband! I'm glad that you are staying connected with Dr. Costantini through this process!
I emailed Dr. C. with a new pull test video. He said that it was good but needed B1 adjustment. He asked to have my husband up his B1 from 100ml x 2/week to 150ml on Mondays and 100ml on Thursdays. Surprised as I know patients of Anglo Saxon origin don't need high doses of B1.
I noticed that my husband after a month on the protocol, his energy IMPROVED, his micrography turned to his regular writing, and his speed improved dramatically. When Dr. C. asked him to stop the injections for a week and get back with him for his evaluation, I noticed a little worsening of his symptoms.
Tomorrow, we will start the new B1 protocol. We will write to Dr. C. in two months to report my husband's progress on the new protocol (increased dosage of B1) and go from there.
Thank you, dear Gio. My husband was on 100ml x 2 a week for a little over a month. After the latest pull test I emailed to Dr. C., he advised this new dosage (250ml/week). He started Monday with 150ml and tomorrow he will have 100ml injection. See how the new protocol works, hopefully well!
Thank you, Gio. Moral support is greatly appreciated. We, the caregivers, need it so much. We will keep fighting PD with everything we've got!!!!
10 days off thiamine. Dr C recommendation of injections being considered. In the meantime limiting my dose to 1500 milligrams supplemented with GABA boosting/anti SIBO herbs.
1500 mg may turn out to be the right dose for you. I started at 3 grams, reduced to 2 after a month and tried 1.5 today because I mistakenly took only 1 gram yesterday and felt better than ever. I'm familiar with Dr. C's speculation about people of Anglo saxon or African heritage needing less B1 than his Italian patients, but I wonder if it's just that thiamine capsules or tablets in Italy are less potent. Congrats on sticking with it. I think/hope you'll eventually be happy with the right dose.
The Solgar send in Italy a different kind of pills?
My opinion Jim is that since it is a vitamin that intervenes in many mechanisms goes a bit balanced with minerals and other vitamins i.e a diet rich in fruit and vegetables and lots of water, at any dose of b1.
I do not say other supplements if not fruit and vegetables because you risk an further imbalance , that is trivial I know. Any nutrition text can explain that better than me. Italy is the country where food is regulated by very strict laws and must always be fresh or well preserved.
I’m a Brit who spends extended periods in the Mediterranean. Fresh fruit and vegetables are my staples and yet high doses of thiamine seem to give me some problems???
I only say my non-expert opinion, let's be clear. I prefer to observe the obvious and try to understand on this basis. You yourself published the thiamine hcl concentration tables in the blood and it was clear that thiamine does not stop in the body, and is quickly expelled. There is therefore no direct relationship between the dose and the symptoms apart from the tachycardia that I experience falls almost immediately if you stop a day. So thiamina participates in energy processes and non-energetic roles and therefore it is my opinion that consume "things" in the body that can then be exhausted. For example, for the energy role of B1 it is known as aids to dispose of alcohol and is used for these problems in emergency response. I repeat, I'm not an expert. One of the greatest experts of B1 is Bettendorf you can find a lot of his work on the web.
I agree about the blood levels point. But thiamine is stored in the body for different periods. We just don’t know enough about high doses. There has been a cumulative effect with me
Continued ... There is an effect on the biome as you have discussed with Easilly in another thread. This is where my problem seems to be. Injections would bypass this
I have used 100ml hcl injections for three years and have never had any problems, I think it is a much safer and more reliable application of the pills. Every time I interrupt my face starts to get stuck. ( my wife obsevation). mah! I am happy with this treatment for now.Gio
I had everything set up for B1 injections. However in u.s. injectable B1 has lots of aluminum in it as an adjuvant so I decided to go the capsule form. However I do believe it injectable B1 would be way better.
You can look on one of those drug sheets that come with the drugs. You can find it online also. I contacted the druggist and in u.s. there's no other except the one that has aluminum in it. On the drug sheet they even warned you of too much aluminum if you're getting a lot of injections. About three and a half years ago I had my hair analyzed and it is full of aluminum. So I am assuming I have aluminum in my brain. Mary
Marigolds, I have about three different kinds and different colors. The bees really like them. Have you noticed practically all the insects are gone. It is such a sad State of Affairs. I have lots of Petunias and hummingbirds like them too. Mary
I read about a lady today who is getting good results using a fairly low dose of thiamine at just 400 mg total per day in two doses. 200 mg at breakfast and 200 mg at lunch! I just wanted to let you know that in case you try thiamine again. Btw, did you contact Doctor C. to let him know about the problem you are having?
Art, I just noticed your post. I'll try it in a little while I'll give it some more time thank you I'll have to get a smaller dosage capsule. I did email the doctor and I got a response back saying to reduce it, but it was still a large dosage. After that I did not contact him again.
I also have dropped from 2000 mg to 1500 mg now. I'm doing better with just 1500 mg, and even with just 1000 mg. It's amazing to me how quickly I resumed a natural arm swing again after not having one on my affected side for MANY yrs, long before I was diagnosed with PD. I visited my brother yesterday, and he remarked that my "hand seems better." He doesn't know about the thiamine. Still adjusting my dosage hoping for improvement in intermittent episodes of limping on my left affected side which occurs after about 3 1/2 hrs after my C/L. Otherwise, my stride now is usually faster, longer, and more relaxed.
Excellent! I'm really happy for you, Marion! As others have mentioned, I wish we had a spreadsheet showing age, gender, weight, date of diagnosis, main symptoms, daily dose of thiamine, and benefits attributed to thiamine so we could more easily compare notes and adjust dosage after consulting with Dr. C. I think Art is right that finding the correct dose is key. It appears that even many of us experiencing benefits have benefited even more after reducing our doses slightly.
You are right. I started with 2g/day and next 1g/day alternating with 0g or 0.5/day and the tremor calmed down a lot. I can stand or jump in one leg, I can do computer programming and sleep very well, no anxiety and no depression. It is much better than last year. No c/l yet.
I'm very glad to hear that ion ion. I can't quite describe it, but in addition to more freely swinging right arm while walking, I had this almost euphoric sense of complete normalcy the day I only took 1 gram. It may be totally coincidental, but I'm encouraged enough to reduce slightly to 1.5 grams. I also started Tru Niagen about a month ago and I wonder if that somehow reduced my need for thiamine. I encourage you to check out Tru Niagen (nicotinamide riboside).
Update. I think I have finally settled on my most effective dose after 3 1/2 months. It appears to be 1000 mg (in 2 divided doses). It takes time and trial and error to determine the correct amount. I'm more relaxed, more flexible, less foggy, have more endurance, improved balance, returned arm swing, and better use of both hands. Thank goodness for Dr Constantini, and also the members of this forum who brought this to our attention. Many of us have benefited from their perseverance! I have now decided to add mannitol to my regimen, as it may, over the very long term, decrease some of the amyloid plaques associated with Parkinson's and possibly prevent any further plaques from developing.
It is for most people, but that is the main point of getting in touch and staying in touch with Dr. Costantini until your dose and response are well established. The people who have done this are the ones who have gotten the best response to thiamine.
the pull test is quite good. The negative facts are due to overdosing. Suspend the thiamine from now until next week. The beneficial effects will remain, while the negative ones will disappear. Then we will agree on the dose you will need to do next
Un saluto
ac
"
Art, I emailed Dr. C. with the newest pull test, and his reply is above. Love this DOCTOR! He responded in one day, AMAZING.
Dr. Costantini is definitely dedicated to his patients, even his email patients and does his best to respond to everyone as time allows. I know there are good doctors out there and he is a perfect example of this! He continues to amaze me with the effort that he makes for his patients!
It might be worth mentioning that sometimes he is unable to respond to some email patients when they send him incomplete information that does not allow him to make an accurate recommendation. In these cases, where no reply is received, it is best to write him again and make sure that your reply supplies whatever information he has requested. In every case, he says to contact him again as needed until your correct dose is established! He is not saying this for his health, it is for our health!
Absolutely! My husband will suspend B1 injections for a week, will observe his symptoms, and then will email Dr. C. again for further instructions.
I know some people are complaining about not getting a response from Dr. C., but they don't realize that they don't send the videos and medical history for the proper prescription and dosage.
The following was posted by forum member attyj on 08/24/2018:
I am taking oral doses of B1. I started out with 1 gram and then worked my way to 3 grams. I corresponded with Dr. C and he approved this approach. I didn't take the video because I don't know how to do it. I also take sinemet 10/100.
My problems were tremors both arms, drooling, facial tremor, lower voice, lack of smell, some trouble holding food down. It's all better now with the exception of lack of smell. My tremors, facial and arms are almost non -existent now.
I was at my regular doctors office the other day and mentioned to the nurse taking my blood pressure that I had PD. She said she never would have known looking at me. My UPDRS score last fall was 40. When I saw my movement specialist last month she reduced it to 27.
I realize that we are all different. I'm not telling anyone to take this treatment but I wanted you to know there are others experiencing relief.
This is a copy of a recent post by Celtis on 08/04/2018:
Celtis
Celtis
2 days ago
I have been on thiamine hcl for two months and my score on the UPDRS has gone from 41 to 29. Instead of deep hopeless depression I feel like a real person again.
I can't imagine why anyone would hesitate to give it a try.
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Hello everyone, yesterday in another thread, Xenos suggested using DeepL Translator in place of Google Translate, saying that it is better. I tried it today and it is definitely better!
Since communicating regularly with Dr. Costantini is a critical step in helping to establish the proper dose for each individual, a fairly accurate translator will be very useful.
I highly recommend that anyone who is communicating with Dr. Costantini use this translator to try and minimize "translation loss" and get more accurate translations both ways.
Thank you again Xenos for thinking to mention this!
St8farm........after corresponding with the good doctor, I continued taking the 4 gram a day B1 that I started with. My children and friends thought I had been cured! Additionally it changed my bowel habits to the good for the first time in years. This effect lasted for several months and just recently have reverted to my hand shake again. Not as severe as before but evident at certain times during the day. I am currently going to contact the good doctor and see what he would recommend. My guess is that I should go down from 4 grams to 3 grams per day but we shall see. My overall analysis is that I am much better off than before I started the B1 and will return to my initial results as soon as I tweak the amount taken each day.
Sounds like a very good plan! Usually a worsening of symptoms after initial improvement is directly related to a needed dose adjustment. I don't know how many times Dr. Costantini has seen this, but apparently quite common if this forum is any indicator. Getting the dose just right is very important! I'm pretty sure he has mentioned that it is possible for the body to get to a point where it just needs less thiamine.
I had a very similar experience. At Dr. C's direction, I am now down to 1 gram per day, but I was just diagnosed in May and have very mild symptoms. As others have said, my bradykinesia initially almost disappeared, but then it slowly seemed to worsen. One day, I forgot my second dose and felt better than ever, so I cut from 2 grams per day to 1. Dr. C suggested that I try 1 gram per day for 3 weeks and report back to him. I've been doing 1 gram daily for about a week. So far, so good.
I guess it's time for my 2 cents. I was diagnosed almost 10 years ago, tremor dominant, very slow progression. I take only Azilect and 1 Rytary 23.75 daily, so almost un-medicated. Symptoms still mild, no smell, right hand tremor and weakness, slight left hand tremor and slight right jaw tremor. That's pretty much it. Dr. C started me on 1 gram thiamine HCL daily in early July and asked me to write back in 40 days. Similar story to others - no changes for 2 weeks, then daily improvements in small increments for about 2 1/2 weeks, and then, for the next week before I wrote back to Dr. C, the improvements began slipping away. I wrote to him two days ago and he told me to increase the dose to 2 grams and to contact him weekly. This is my second day on two grams and I'm feeling great! Aside from no sense of smell, I fell totally normal. Of course, I have no idea if this will last but what a mysterious and wonderful adventure this B1 experiment is!
First, congratulations on your improvements, especially the tremors!
Second, thank you very much for adding your results to this growing list!
Third, I am very happy to see that you are staying in touch with Dr. Costantini during this period of trying to get your dosage perfected! That seems to be the best way to go with this thiamine protocol!
Please keep us posted on your dosage adjustments and progress!
Oh I just found my original post. Sorry for the duplication but:
I can't find my earlier post to update but wanted to share that Dr. C raised my B1 to 2 grams and I had a fantastic virtually symptom-free almost 2 weeks. Then everything slowly came back, even worse than before. I'm guessing the dose was too high. Dr. C must think so too as he told me to take a 5 day break, start at 1.5g and be in touch every 2 weeks. At least I know what's possible!
Hello again. I followed Dr. C's recent advice and am, so far, seeing excellent results. Am posting our correspondence verbatim:
Dear Dr. Costantini,
I’ve hesitated to write because my current thiamine therapy (1.5 grams) is going so well. I keep waiting for the situation to deteriorate, but it does not! My tremor returns only when stressed (doesn’t take much to wake it), my right hand stays strong enough to type for most of the work day, and even a very tiny bit of sense of smell has returned, Symptoms have been improving in smaller increments at this dose. I am hopeful this means the improvements will continue!
From Dr.C:
You will be fine forever, I tell you with the certainty of the experience of having treated about 3500 patients, some of them for 5 years. These patients are fine and have no feeling of being worse off in the future. Look at highdosethiamine.org, watch the patient's n. 5 videos made about 5 years ago, then look at the interview with him and his wife made a month ago. Then I'd like a comment from you.
From me:
The videos are quite amazing and it seems that improvements can continue after the initial changes. Truly, I am convinced and am so grateful to have found both you and the correct dosage. I do have questions: Is it important to take thiamine with food? I do not but see that others do. Also, I’m not splitting the dose, rather I’m taking 1.5 grams all at once on an empty stomach in the morning. Is that all right? It’s certainly working for me!
Now that I’ve found my dosage, should I resume other supplements?
From Dr. C:
Good news. It's better to take thiamine on an empty stomach, so go on if it doesn't bother you. It's even better to take it all at once. You don't have to take supplements anymore, they don't do anything and there is a rare chance that they can interfere with your current treatment. Keep me informed and keep it that way. You'll be fine and over time you'll see that the disease won't go on any longer, but will stay still forever.
Early stages, diagnosed March 2018 although symptoms preceded for at least 5-6 years that I can relate to. He sure takes B1, B3 (NR), Folate, B12, and L-dopa (MP). Of course he is on a few more supplements, Omega 3, D3, C, E, Selenium, Zinc, CoQ10, Turmeric, Liposomal Glutathione, Magnesium, Probiotics, L-glutamine, and Hepato Thera Forte (liver protection). He complains that he takes a lot of supplements and I do want to have him take a lot less, but I believe all these supplements help a lot!
So, are you suggesting to stop the supplements? I do cook good, healthy food, daily and everything is organic. I also cook a variety of foods with lots of vegetables and legumes. Olive oil for everything I cook and use it sparingly in salads. We eat a lot of Kalamata olives, too. I am so confused with the TIGER, Gio!
The correct dose of ldopa is personalized by my dr C. and is based on my response to it, my dose is an average dose divided between madopar ER extended release and madopar normal divisible pills. This required a year of adjustment and lately I have diminished the dose a little bit, but just after three years, from myself and without problems. Otherwise if I eat so many proteins like meat there could be some problem. But this is known! Gio
You are so right, Gio! Depression is hard to deal with and that's my husband's biggest non-motor problem as his only motor symptom is intermittent RH and LH thumb tremors. OK I lied, he has a little bradykinesia although it has improved with the B1 therapy.
Three natural approaches to depression are vitamin D supplementation that gets you into the upper half of the reference range, quality probiotics or fermented foods and drinks as well as magnesium. Thiamine also has a positive effect, but these four are a slower gentler approach than medications. These four also come with the potential for other health benefits!
This link describes the effects of probiotics on PD:
Thank you Art! He is on probiotics, D3, and magnesium. Actually, the Functional Medicine doctor prescribed the specific probiotic in combination with prebiotic and colon cleanser. He is taking magnesium glycinate also prescribed by the same doctor, he uses Magnesium Oil (actually following your instructions I made it the other day when the commercially bought finished) and takes 10,000 units D3 after having a vitamin D test. He hasn't had a cramp for a very long time, thank God!
Overall he is doing a lot better, but there is still room of improvement as far as his depression is concerned. He has not completely accepted it yet. . .
Does the mag oil help with the cramps and or pain? I see people describing slow steady improvements using thiamine once their dose is "completely fine tuned", so I would think your husband can look forward to better days ahead!
Absolutely, Art! Hasn't experienced any cramps for a very long time. He only complains about his knee ache. I suspect it's a combination of knee surgery he had several years, arthritis, abuse from running, playing b-ball and racquet ball and lastly but not least age and PD. Today he was almost back to normal and I attribute it to B1. Pray and hope that better days are around the corner, not just for my husband but for all the good people here in HU.
Yes, it works for his cramps. The knee ache is not constant, comes and goes. Ibuprofen helps, too. Nevertheless, I believe that magnesium oil helps his knee ache, too.
Good to hear! My neighbor who is 80 years old is very active and she asks me to make mag oil for her because she uses it all the time before her daily workouts and she tells me it is the best she has used and wouldn't be without it now! She just told me this week that her grandson came to visit her the other day and his knee hurt and was swollen and she sprayed his knee with the mag oil and it stopped hurting within minutes and the swelling went away and her grandson could move on his knee normally with no more pain at all!
That's just great! You have helped so many people, Art! The only swelling my husband has is his right ankle, his PD affected side. No heart problems, so I don't know what it is.
This reply is to update/confirm my B-1/Mucuna adventure: I am on a regimen of magnesium from pills to oil and my wife massages my leg muscles nightly with her own home brew magnesium (courtesy of one of Easilly's blog posts). That combined with my B-1 injection therapy and mucuna has me feeling almost normal again. . still a bit of a struggle with B-1/mucuna dosage but making progress. Have an update due to Dr C in October.
I consulted with Dr. Costantini via email and sent him the required videos. He responded the same day. I weigh 155 Lbs, PD for 5 yrs, taking 7 tabs 10/100 Sinemet/day and 10 mg Selegiline. Started on 2 g B1 Thiamine 5 days ago. Asked to report to Dr. C in 2 weeks. So far, feeling less fatigue, more clear headed, happier. No noticeable effect on symptoms which are already well controlled by medications. Hoping B1 will fix diphasic dyskinesia.
Recently advised by Dr C to take 2000 mg of Thiamine, based on my age, weight and stage of condition. He suggested half at breakfast, half at lunch. However I thought I would initially take 1000 mg, to check my tolerance, and build up to the recommended dose over a week or 2.
Taking G &G Vitamin B1 HCI 500mg capsules (UK made) through Amazon. So far no issues at all and perhaps feel more energetic. Will report again once full dose has been established.
I emailed DR. Costantini and received a detailed response and I am starting on 2 Grams of Thiamine tomorrow monday 20-aug/2018 100mg tablets acquired locally. I ordered Thiamine powder from Purebulk.
I saw a reference to Injecting Thiamine... what needs to be prescribed to do this?
I much appreciate the time and effort you have invested in PD support.
I have just been told that I have the funding needed to have DBS and await an assessment date... I saw the miscellaneous responses to dbs and I still have time to reconsider.
The one who can give you information on how to obtain the IM injections is forum member Despe as she has done significant research on that subject for her husband.
Juliegrace found a compounding pharmacy in Southern California that can make them up and claims there is no aluminum in their product, but you will need a prescription from your doctor for the injections. The intramuscular injections are usually to the butt.
Regarding the thiamine powder, my thinking is that initially while trying to determine your optimum dose, the capsules may be the better way to go because they are already accurately premeasured @500 mg each and they are convenient to take even if you are out and about. Once your optimum dose is discovered, then you can incorporate the powder for the times when you are home, while still using the capsules for all other times.
You should use a cheap digital scale for measuirng your powder for accuracy as the dose can be quite important. I bought a digital scale for under $20 on line and it is handy for me.
Considering that DBS is a fairly invasive procedure, it might be worth trying the less invasive options first and save the DBS until your other less invasive options have been tested and determined to be not effective or not effective enough.
Bill, good luck with your B-1 experiment and please keep us updated!
The following was posted by Kattripp on 08/18/2018. It is interesting because they were able to apparently reverse what may have been a mild thiamine overdose situation by adding Jarrow brand B-Right complex!
Kattripp
Kattripp
a day ago
My husband has been on High Dose Thiamin for 1 month now, and he too has periods without tremor.
Walking quicker, some return of arm swing, no longer shuffling.
C/L seems to kick in faster, too.
We did see increased tremor at 3 grams and rather then cutting back, decided to restart his Jarrow brand B-Right complex
to balance the other B-vitamins.
This worked for him, now on 3.5 grams in divided dose, along with one B-complex.
Life is good, and praying it will stay this way.
Please keep posting about your successes!
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• in reply to
This post above by Kattripp, was so interesting to me that it made me write to Dr. Costantini right after I read it and copy & pasted it into this thread, to inquire about what she and her husband had done, because I had not seen it before.
He was starting to get good results using B-1 when he also started to get the B-1 overdose symptom of increased tremor. Normally, Dr. C will have you suspend B-1 treatment for a few days to a week and then resume B-1 at a reduced dose in order to counter this event, but Kattripp and her husband decided to restart a B vitamin multi that he had previously been taking, prior to starting B-1 instead of suspending B-1 which has pretty much been the standard. By doing this, they were able to not have to stop the B-1 and the tremors went away with the addition of the B vitamin multi! I'm sure many of you saw this post and wondered about it also. This is what I wrote to Dr. C and his reply :
A forum member posted the following about her husband who has PD and I thought you might find it interesting how they dealt with what might have been a dose that needed adjusting.
Dear Art, you are an excellent observer. I will think about that. It may be that the symptoms of overdose in part or in full may depend on the imbalance of the vitamins. A greeting. Antonio
So perhaps Dr. C is giving further thought to the idea that using a B vitamin multi along- side B-1 in order to try and prevent overdose symptoms that seem to be so common for many, might become a thing!
There are plenty of comments by people on the web who always mention that B vitamins should be taken as a group rather than individually in order to maintain B vitamin balance and maybe they are correct. In any case, Dr. C looks like he is trying to get to the bottom of this!
Hi Art! Based on Dr. C. recommendation, my husband suspended the injections (100mg X 2 week) for a week. I sent him a new video with the pull test done this time by my son (6' 2" , 200 bs) and when Dr. C. saw the video, he recommended B1 dosage increase--150mg on Mondays and 100mg on Thursdays). He has been on this protocol for roughly 2 weeks (started August 13). So far I have not seen much improvement. He does, however, take B3 (NR), Folate (5g, but I will lower it to 1g) and B12 5,000 mcg. He takes B6 but low dosage (included in MAG SRT 2 mg). His functional doctor recommended "Homocysteine Supreme" but it has 25 mg of B6 which I thought it was too high. Prior to that he was taking Jigsaw Activated B w/SRT, but that too had 25 mg of B6 which I thought was too high for PwP. Then I decided to go on individual B supplements (B3, Folate and B12) as the doctor wanted to protect him from high homocysteine levels, although his test result was 9something). My question is: shall we go back to a good B complex? I have found good ones but they all have high B6 percentage. Would taking individual Bs work the same as a B complex? More insight on B6??
I could probably work on an answer, but why settle for me when you can have Dr. C answer all of your questions more authoritatively? He has way more experience than I could ever hope to have and when it comes to anything pertaining to thiamine and PD, he is probably the world's best authority. You already know that the people who do best on his protocol are those who stay in constant contact during this initial run in period and he has said that there is no question too small. If it was me, I'd be dropping him a line right now and not settle for anything less than the best! At two weeks on the new dosage, that is probably enough time to check back with him anyway! He is probably asleep right now, but if you send that email now, he will probably see it first thing in the morning and respond! What you just told me is pretty brief and concise and it should work, so just copy and paste it, but don't forget to change the name! 😊
Art, thank you for your reply. Last time I contacted him was when I sent the new video (about a month ago). He then asked me to have my husband try the increased dosage for 2 months and then contact him again. It's only been 2 weeks, but my question is basically B complex or individual ones?
I wouldn't add a thing until you reach the 2 month mark because this is going to make it harder for Dr. C to figure out what is happening in relation to the current dose. The most important thing at this point is to find the correct dose for your husband and clouding the picture by adding other supplements that Dr. C has not suggested could potentially slow the process and be counter productive. If you want to add it, write Dr. C and ask him so he can be fully aware of what is going on.
Art, when I first contacted Dr. C. I had listed all vitamins/minerals and meds he is on. He didn't ask me to suspend anything, so we continued with the vitamins protocol he was on based on our FM doctor's prescription. The only thing we added is MP which I believe would help with B1 interaction. I will contact him in 2 months.
Update: I’ve been on high dose B1 Thiamin for Over 2 months’ w improved gait and arm swing on affected areas/right side only (I am left hand dominant).
Although My tremor abated w Selegiline /Eldepryl a year ago- I am Starting a trial without Selegiline to test effects of Thiamine, alone, on this right sided arm/hand tremor.
I also Exercise daily, eat well & Practice gratitude.
Thank you for the update as these are very useful for other members to compare with their results while also showing the variation from person to person with this thiamine protocol!
I knew you had been on B-1 for a little bit and I was wondering how you were doing on it. Glad to hear that you are seeing benefit! Please keep us updated with your experiment and results!
This is a direct copy and paste of Ernie's progress since starting B-1 on 8/23/2018 until today, 10/ 03/ 2018. It is worth noting that Ernie is using B-1 in the bulk powder form which is pure with no fillers and no gelatin capsules, but it is also quite bitter and as such may not be suitable for everyone. He started out mixing it in Gatorade, but has since switched to mixing it in water.
Started taking powder form B1 (1 gram) in some Gatorade and even so it is very bitter. So far it's fine. Will keep you posted on progress. I can say that I feel some immediate relief from dyskinesia five to ten minutes later. Even if it's all in my head 😁😁 it sure feels good.
The dyskinesia kicked in again about 6pm but then about 8:30pm it eased off. Dyskinesia is very uncomfortable and overwhelming so when it eases up it sure feels good 😊. Will keep an eye on it because I'm under the impression that B1 is relieving the dyskinesia. I also think the dyskinesia is brought on by the MP either the brain is not processing it well or I'm taking to much (1/4 teaspoon twice a day). Anyway I'm just sharing my self diagnosis maybe someone could make something of it and receive some benefit or at least be encouraged. No one is able to fight harder than you, to get better.
As per Doc C the L-Dopa will no longer lead to DYSKINESIA.
We observed that the right dose of thiamine can lead to an improvement of the symptoms between 50 and 80-90%, but in order to push towards the complete regression of the symptoms the correct dose of l-dopa should be coupled to power the dopaminergic motor circuits. L-dopa then shall no longer lead to DYSKINESIA if used together with the high dose thiamine. The treatment is based upon the hypothesis that the disease leads to the death of neurons through its interaction with the intracellular metabolism of thiamine. This action can be blocked by the administration of high doses of thiamine. The neurons, once no longer burdened by the primary cause of the disease, restart their activity and this leads to the improvement of most symptoms. Continuing the therapy, the neurons might stay healthy regardless of the existence of PD. Thus, in addition to a rapid improvement of the symptoms we observe also a freezing of the evolution of the disease. However, the primary cause of the disease is not directly interested by the therapy. High dose thiamine does not eliminate the primary cause of the disease but blocks all damages inflicted by the disease. Therefore, the high dose thiamine is a pathogenetic therapy. The therapy thus limits the degeneration of the nervous system which continues to work efficiently when freed from the limitations posed by the disease. When the high dose thiamine is suspended after a cycle of treatments of three months, the beneficial effects do not cease right away but start to diminish within the next two months. We believe that this happens because the mechanisms of action of the disease have a certain buffer effect which in turn requires a couple of months before getting back to the status of the symptoms before the use of high dose thiamine.
Amazing Dr.C wrote back already 🙃. I wrote him this morning stating my height weight and how I'm starting with 2g 2x a day and a short video walking back and forth. He replied keep doing that same dosage and keep me posted every week. Also send a list of medications which I take if any. Just did that. I'm am so grateful to you all and very motivated. 👏🏻😁👏🏻
Here's the update. After taking 4 grams of B1 for three weeks now on day sixteen I ate eggs and pancakes for lunch and my dyskinesia was through the roof. But yesterday on day 17, my on time seems to have been extended by an hour and change and barely noticeable dyskinesia and today day 18 has been an even better day. I can actually sense the positive effects the B1 is having on keeping the dyskinesia at bay and extending my on time and relief of fatigue and increase of energy. I've actually felt like increasing the dosage in hope of getting even better results, but I'll wait to see what Dr C says, I'll write him tomorrow.
Wrote to Dr C yesterday, to ask if I could increase to 6 grams a day. He said continue with 4 grams for another 60 days and send him a pull test video whenever possible.
You gotta keep it real though, Ernie! People are reporting tremor improvement as one of the last benefits they are seeing and that is usually somewhere beyond 4 months. You're only a few days over one month. I have seen 19 B-1 users who have reported tremor improvement and I have written their names down to keep track. Dr C. has said that improvements continue to at least 6 months, but I have seen people reporting improvement beyond a year!
10 days ago - Get in touch with Dr C. High dose thiamine is going to help with all symptoms. My right leg is not freezing or dragging and cramping anymore after a month of 4 grams a day.
Posted 9 days ago - I’m seeing better days ahead much less dyskinesia almost non existent bradykinesia or cramping and all thanks to Dr C and his team including everyone here. Love you all 😊
Posted 3 days ago - Right now I feel normal as if I don’t have Parkinson’s but when this mucuna+B1+herbs wear off I’ll start slowly twitching combined with tremor in right hand. I usually just wait till a bit later to take next dose because it doesn’t make any sense to take it if it’s not going to work anyway I also like to space it as far as possible from food. Yesterday though i dosed at 7:30am which worked great until 11:30am. Right then I took second dose and it worked great but only for like 2 hours.
Posted yesterday (Oct. 2). I visited my primary Dr today @5pm she said you're doing very well I don't see any tremor 😁. I wanted to tell her yes B1, but I don't think she'd understand.
New high from B1. So I've been using B1 for a little over two months now and what I do is I take a mix of 15 natural herbs plus B1, 2 grams plus Mucuna pruriens plus magnesium at 7:30am and wait at least an hour before eating anything. That dose gives me relief from every symptom which Parkinson's brings on until about 4 hours later normally what I would do is repeat the dose about 3 pm and get some relief from symptoms but not as much as in the morning. Yesterday I decided to try using sinemet one 25/100 pill at about 12:30 and it brought some relief, but the exiting part is that when I did the 3 pm dose of the mix I do in the morning wow that was amazing better than the morning relief. I'll keep pressing forward. Be encouraged!!!
I am glad you are finding ways to maximize your benefit and what you are describing is exactly what Dr. C has consistently said, that there is synergy between C/L and B-1! So it sounds like you are zeroing in on that sweet spot which would be #79 on the "thiamine 80 reasons" list, finding periods of time when you can sometimes forget that you even have PD! WTG!
I received the B1 high potency tablets from source naturals today (500mg thiamine +100mg MAGNESIUM)and was excited to try it, but followed your advice about too much MAGNESIUM in these for someone who's taking 4 grams of B1 as I am. So my right dominant arm was shaking like a leaf in hurricane Sandy and hence I felt stressed out, overwhelmed and a list of symptoms. Then I took my regular concoction which consists of 16 herbs (will share list as requested), 1/8 tsp. scoop of Mucuna pruriens, 1 gram of B1 powder mixed in a very little water like a mud mix and finally the 2 tablets of B1(500mg THIAMINE + 100mg MAGNESIUM). The initial response felt harsh on my stomach, but 15 minutes later I feel WONDERFUL, NO TREMOR, BETTER THAN EVER. The response to the tablets form is better. The controlled magnesium measure works great for the thiamine assimilation. Warning ⚠ BE CAREFUL WITH THE AMOUNT OF DAILY INTAKE OF MAGNESIUM. Wow I feel great though. Best response yet from high dose thiamine protocol by Dr C.
I've just finished my 1st bottle of 300 capsules of 500 mg thiamine. Almost settled on the correct dosage, but may tweak it one more time. I started thiamine on 6/3/18, so be prepared to have patience with the process. I'm just now seeing improvement in my tremors.
Congratulations on the tremor improvement! Not bad, for just one bottle under your belt! At just two months and three weeks, many people are still trying to find their correct dose with little or no benefit yet so you are actually doing pretty good!
Thank you for the update and please keep them coming!
I've been taking 500 mg twice a day for just over 2 weeks. It's at 2 1/2 weeks after a dose change that I usually find out if I'm going to need to change my dose. I'm doing pretty well on 500 mg 2X a day, but I may increase it by another 500 mg a day in another week.
I have had a very similar experience. After 3 weeks at 1 gram per day, I'm going up to 1.5. My pull test is fine and I still feel great, but I think my arm swing isn't quite as natural at just one gram per day so I'm adjusting up slightly. I think/hope 1.5 is where I'll settle after being as low as 1 and as high as 3 grams per day. Good luck Marion!
After 2 weeks, I noticed episodes of increased stiffness on my affected side while on 1500 mg. I stopped the thiamine for 6 days, and the stiffness gradually decreased. I have restarted at 1000 mg a day again (in 2 divided doses). Looks like that will probably be my final adjustment. I feel I am decidedly better, with less mental fogginess, better use of my hands, better endurance, more flexibility, improved arm swing, better balance, and a more relaxed feeling.
It's strange how similar our experiences have been. We started thiamine around the same time and have tweaked dosages at about the same times at the same levels. Just this morning, before reading your posts, I had decided to discontinue for five days and the resume at 1 gram per day. I may ultimately alternate between 1 and 1.5 grams per day...the good news is I know I'm close. I just had extensive blood tests done which measure various vitamin and mineral levels in blood serum AND white and red blood cells. My B1 level in my blood serum was off the charts, but it was right in the middle of the optimal range on the cellular level. I wish I'd had a baseline test done before starting on the B1 megadose. I'm still bothered by micrographia and my right arm swing is inconsistent, but I am better now than I was in May and I'm virtually symptom free. No complaints in my world...now I'm off to the gym to sweat like crazy. 😊
Update: The first week of Oct I noticed an increase in weakness, so on the 9th, just for the heck of it, I increased my thiamine to 2 grams a day again, with a BIG improvement in flexibility, decreased weakness, and much more relaxed feeling. I have also stopped my entacapone because I happened to have missed a dose and noticed a decrease in the intensity of the break-through tremors that occur right before my next scheduled dose of C/L. I've been on the entacapone for several years and it never really seemed to extend the action of my C/L anyway. I skipped a few more doses and so far it seems to be better without it. So carrying on with my tweeking! Will see how it goes and report back later.
I have corresponded with Dr. Constantini 3 times and he has answered me in English
twice in 2 hours and once in 10 hours. He sells no book, no newsletter, no proprietary pill or medicine. His counsels are at no charge from him or his staff of doctors. He has around 3000 patients in Italy, and additional people follow him in the UK, U.S., and Australia/New Zealand. My markers for Parkinson were bowel/constipation issues, right hand tremor, slowing speech, and balance issues. Since the advent of 4 grams of B1 (hcl) per day I am only left with tremor in the right hand and that is minimal to the point that many people think I have been cured from their perspective. You and I both know that is not true but there has been such a remarkable change in the 4 months that I can live this way for the rest of my life and not feel as though the Parkinson’s is a detriment to my living well. Time will tell but I and many other people on this protocol are thankful we found it.
Ditto... " there has been such a remarkable change in the 4 months that I can live this way for the rest of my life and not feel as though the Parkinson’s is a detriment to my living well. Time will tell but I and many other people on this protocol are thankful we found it."
I want to discuss something that I think I see on this forum, but am not sure if it is correct and I hope others will chime in with their opinions.
First, I would like to reiterate that I do not have PD and as such, I sometimes feel out of place on this forum because I am often times commenting about symptoms which I have no firsthand knowledge of and it makes me feel inadequate for the task at times.
What I wanted to discuss is why it seems like on this forum that very long term or PWPs with severe symptoms do not seem to ever talk about the possibility of using B-1. From what I can gather on this forum, it seems like the ones who test thiamine and report back are relatively newly diagnosed as in 10 years or less, but it seems that the longer term or people with severe symptoms just don't seem to get involved in B-1 discussions. I know in some cases the symptoms are such that using a keyboard and computer can only be done with great difficulty or not at all in which case the reason is apparent, but it seems that there should be many PWPs of long duration and or severe symptoms who can still use their computers.
I suspect there could be many reasons such as just not having confidence in supplements in general as a viable adjuvant treatment for PD. Dr. Costantini has been fairly clear on the idea that if you are a B-1 responder, no matter what your current stage of disease progression, symptom improvement is seen. He has suggested that someone with 25 years since diagnosis may not see improvements like someone who was diagnosed in the past 3 years, but he is clear that symptom improvement is still seen. Add in the potential for halting or slowing disease progression and all the more reason to consider or discuss B-1!
I know a lot of alternatives have passed through this forum through the years and they seem to come and go with regularity, but B-1 looks like it may be around for awhile.
I look at these two videos and I feel like they would be very motivating, but apparently not to everyone:
I'm sure it would have been easy to fake these videos, but I am doubtful that these are fake based on what users are reporting on this forum. Also from those results, it is becoming apparent that some are not able to tolerate B-1, but the majority do!
Based on the results that Dr. Costantini has described in his patients in Viterbo and what we are seeing in the 50 plus people on this forum who are using thiamine along side their standard meds or alternatives, I wonder why it seems that this longer term group seems less likely to try B-1, or am I just seeing this wrong? In any case, feedback on this subject could be useful.
That's an excellent observation---I wish some of these PWP who have a longer than 10 yr duration would respond to your question. Although I was diagnosed in Dec of 2011, I had symptoms of parkinson's several yrs before that--loss of left arm swing and loss of sense of smell, as far back as I'd guess ~2000. In the more advanced cases of people on this forum, it's probably their caretakers who would have to take the initiative.
Art - First let me say I find your altruism to be a breath of fresh air and your additions to HU most valuable. Thank you for being such a nice person.
Anyways just a few thoughts. First 5 people have emailed me because they wanted my opinion on whether or not they should continue taking thiamine even though they were seeing no benefit. My opinion is that for most PwP thiamine may only slow progression but the risks from thiamine are almost zero and the cost is minimal so why not take it. I mention this because I think there are many folks that have tried thiamine but who felt no benefit but who also just don’t want to post a negative comment when thiamine is so popular on HU. Also there is the simple fact that an earlier poster said he worked with a clinic and out of 2000 patients about 20% took thiamine and of those less than 20% saw a benefit. Did he make that up or is he telling the truth? Personally I believe him. Lastly I admit I haven’t checked in about a month but I made a list of all responders on this thread and their relative results and time frames. What I can tell you is that the number of high benefit longer than 30 day respondents was around a dozen a month ago. Altogether this makes me feel that a lot of people have tried thiamine but the large majority saw no benefit but just like a failed clinical trial you simply don’t and won’t hear about it. Anyways just another 2 cents :). Joe
You are correct, there are more than what I have mentioned in terms of taking thiamine on this forum, but they have only mentioned it briefly with no follow up posts so I do not include them in the "more than fifty" count.
I think we are seeing the normal ratios at work. We know about the 80/20 rule. That is 80% of the population work for the 20%. 20% of the people do the work of the 80%. I call the 20% "Problem Solvers" and the 80% "Rules Followers."
The population majority find it very hard to buck the system and try something that appears to work but has not hit the big screen of a national news or publication outlet. They won't change unless they are at their wits end.
I wonder what the rate of acceptance is for those from this HUB community who have shared this message. My ratio is 2 out of 35. 'Bye the way', the two were out of any other options.
I have sent them all a listing of my life improvements like I can type this memo and use my mouse like I did pre DX, after 5 months of the B-1 therapy, but they will wait, for who knows what, or they must ask their doctor first.
I just wonder if there is a fear that they might get the hopes up and it wouldn't work for them.
Yes, I can see that people don't want to get their hopes up only to be let down. I can see from going back through older posts that there have been many things that have initially shown benefit to very few and then just faded away with no more followup. I suspect in many cases there is the placebo effect at work and that is why there is no significant followup.
I don't think B-1 falls into the placebo category. I think the on going improvements PWPs are getting from B-1 and reporting on the forum, have not been seen before from any other supplements in terms of quality and quantity of symptom improvements.
My hope is that as the "who is taking thiamine" page continues to grow and show the results that PWPs are getting from B-1 that it will attract the attention of those PWPs who might be "on the fence" about looking into thiamine and that they too will be able to get those many benefits for themselves!
Hi. I believe I fit in the category you are referring to above. I was diagnosed 15 yrs ago at the age of 46. I have thought very seriously about the B1 Protocol, but have resisted due to several reasons:
1) The dosage is so high, it scares me even though it's a water soluble vitamin
2) I don't like the fact that it can make symptoms worse before they get better, could they get worse and NOT get better? Is there enough evidence that won't happen? Will this protocol even work for me?
3) For having PD for 15 yrs., my protocol has worked pretty well so it scares me to try something that could possibly mess things up. I may have to quit some vitamins, etc. that are working for me now, will that mess things up?
4) Rock Steady Boxing works well for me, but a lot of people won't try it, even though hundreds of people all over the world have been helped by it. Why won't more PwP's try it?
5) Dr. C, you and Gio seemed to come out of nowhere and have this new protocol and are not charging anyone for advice, which is wonderful, but some people might be a little skeptical of the underlying motive. In the times we live in, being so generous is unusual, although I've said for years that one positive symptom of PwP's is that you have to be a nice and caring individual.
6) People don't like change.
Hope this helps you understand why I haven't started on B1. I haven't given up on the idea. I think about it every day, but I haven't been brave enough to make the change. I appreciate you caring enough to ask the question and I appreciate all the time you have put into this information. Out of the 6 reasons I came up with, I think #2 is the biggest reason.
I think you're missing one--when PWP ask their Drs about the success with thiamine, most of the Drs conceitedly disparage the idea and say it won't work. Some people are afraid to go against their Dr's recommendations.
I can verify that you are correct as one of my friends with PD is afraid to go against his doctors recommendations. His doctor told him that thiamine or any other supplements would not do a thing for PD, but he also told my friend that he could waste his time and money on thiamine if he wanted to because it likely wouldn't hurt either. Because the doctor did not actually "recommend B-1", he wouldn't take it.
On a related note, I saw another of my PD friends last Saturday and he had decided to try B-1 against his doctor's wishes and I was amazed to see that I could no longer tell that he had PD!
Regarding # 2, I have not seen one report of a worsening of symptoms that has not improved and Dr. Costantini has not reported such a case as of yet in his 2,700 plus patients. I'm not saying that it will improve over night, but it seems that once the sometimes elusive correct dose is finally found, improvement seems to be the norm.
Regarding your reluctance to give up using what is working for you makes plenty of sense. If it ain't broke, maybe you shouldn't try and fix it. I get it. The good thing is that it looks like thiamine may be sticking around for awhile and you can just keep it in mind in case your situation changes!
laglag, if you wouldn't mind saying, what are your current symptoms?
Thanks for your encouragement, I'm still thinking about it. Meds and boxing have helped some of the first symptoms I had, which was a leg drag on my right side and not swinging my arm. I still get those if I'm really tired or stressed or if my meds don't kick in right away. Have had problems with rigidity, which I take Emergen C for and it helps a lot. I used to be constipated, but have found that Cheerios with blueberries have helped, and I also eat 2 or 3 handfuls of mixed nuts every day. The last 4 or 5 yrs, I've had tremors on my left side and my head tremors also. When my meds are not working, I move really slow, it's difficult to do things like stir food when cooking, getting ready in the mornings, clean house, etc. When my meds are working, I do fairly well, but if they are not working, I have problems. I have a masked face at times and I can't multi-task any more. It's difficult to roll over in bed and I have trouble sleeping. The last couple of months, I have noticed a little bit of balance problems. With doing boxing, I have been able to keep my meds and symptoms at a minimum, which I think is important for living long term with PD. I take 4-5 Parcopa (dissolving Sinemet), 2 Azilect, 2 Amantadine per day. So, it is broken, but a little glue is helping keep me together. A few weeks ago, I did buy some B1, but haven't taken it yet. I wrote Dr. C about my Dad taking B1, he doesn't have PD, but he has gait and balance problems and his muscles are very weak. I started him on the B1 and that evening I had to take him to the hospital for heart related issues and now he's in rehab, so he only took one dose.
Well at least you know that Dr. C and HDT/ B-1 are there if you ever feel the need to try it! As far as the Cheerios though, you may want to curtail those for awhile based on this:
I am puzzled by your number 5. I invite you to reconsider it. If none of the 3 of them are asking anything of you including money, what is there to be skeptical of?
Every person on this forum, yourself included, came out of nowhere at some point.
I think there is good insight in each of your other reasons, and I share some of your thinking, but these 3 gentlemen have given an enormous amount of time diligently researching complex material to help people they never have, nor ever will meet.
This forum collects its share of blather, wive's tales, and good intentions gone astray, but I would stake all that I own on their motives being altruistic.
Symptoms did not get worse before they got better for me, with the use of B1. They were getting worse quick before the use of B1.
Yes, I can see at the extreme, apathy and hopelessness could be two legitimate reasons, but it seems that there would be a multitude of degrees shy of the extreme, yet beyond the 10 year range of PWPs who could potentially benefit from B-1.
I am sorry. HUB is what I call Health Un Blocked. Even though it is Health Un Locked for some unknown reason I give it a different name. Anyway, it is this site. I apologize for the confusion.
I think it is just another name for B Multivitamins, which contain B1, B2, B3, B6, B12, etc. Google "b multivitamins" and you'll see several brands. Another name is B-Complex Vitamins...
I actually just started taking a B multivitamin today because my chiropractor suggested it after reviewing extensive blood tests which I recently undertook. My Homocystein level (whatever that is) is too high and Vitamin B (particularly B12) is correspondingly low. Hopefully elevating Vitamin B12 will lower homocystein. I also take 1.5 grams of thiamine (B1) and 500 mg of TruNiagen (B3) every day... Good luck!
When I'm conflicted with a difficult decision, I go back to the old exercise of listing out the pros and cons.
If your Dr. is dismissive of B-1, write "Parkinson's" on top a piece of paper. Underneath it make a list of all the pros and cons of having PD. Be sure to include everything, i.e., slowly losing control of your body, not being able to take your spouse out to dinner or a movie, unable to do your half taking care of the household, constipation, depression, falling down, dementia, cannot drive a car anymore, insomnia, isolation, fear of the future, anxiety, etc. (Did I miss anything?)
Then on the upper right-hand side, write down, "taking B-1." Underneath it, make a list of all the pros and cons.
Taking B-1.
CONS
1) My doctor doesn't think it will do any good.
2) it might not do any good.
PROS
1) it might provide some relief from this god-awful, dreadful, all-consuming nightmare.
2) it might even reduce my symptoms and allow me to lead an almost normal life.
This new post was posted by Butterflygirles on 8/30/18 :
Butterflygirles
Butterflygirles
9 hours ago
PD is an insidious disease. Been on antidepressant cpl yrs which helped some. Learned another non-motor symptom APATHY (lack of motivation) is mistakenly diagnosed/treated as DEPRESSION. B1 therapy 3-4 mos now 2.5-3 gms giving good results for apathy as well as other non-motor (fatigue, constipation, handwriting, smell) issues. So thankful for day I stumbled across HU and Dr Costatini’s B1therapy wisdom.
Dr C replied to my follow up email from less than 24 hours ago. My improvements will be documented from my computer (now on iPad app). Short story: he explained how my cells responded to Thiamine and how to continue keeping progression at bay with maintenance dosage same as treatment dosage 4gm/d divided am and pm 2gm ea. Wow. Hallelujah y’all. More to follow.
Good luck! It may take as long as three or four months to figure out the right dose.
albachiara2 albachiara2
albachiara2
This is a copy of a post on ( 9/6/2018 ) by albachiara2 of her thiamine experience. It was written in Italian and Gio was nice enough to translate it for us! It does not appear that she was in constant contact with Dr. C, but instead had her neurologist work with her. You can see by the time line that it was slow going because her dose was too low and her neurologist was not familiar enough with high dose B-1 and so it took her a very long time to get her dose right. This is a good example of why it is most expeditious to stay in touch with Dr. C during this testing period!
First her post in Italian and then Gio's translation in English :
Sono Albachiara, ho difficoltà, nonostante il traduttore, a comprendere molti post, ma voglio dare il mio contributo su questo tema della B1 e dire un grande grazie al Dottor Costantini.
La malattia di Parkinson mi è stata diagnosticata all’inizio del 2016, ma i primi sintomi si sono manifestati un anno e mezzo prima.
Sono stata curata dal gennaio del 2016 con una cpr al giorno di requip da 8mg ed una di jumex da 5mg.
Ma i sintomi non motori non miglioravano: gli sbalzi di umore, le crisi di pianto, la frustrazione, l’insonnia restavano invariati ed io non volevo prendere psicofarmaci,né andare dallo psicologo, mi sembrava di combattere giornalmente contro i mulini a vento:era come camminare in un tunnel e non vedere mai la luce.
Poi lessi di questa terapia proposta dal Dott. Costantini e pensai che poteva essere la svolta che cercavo.
Ne parlai alla mia neurologa che mi fece iniziare con 300 mg di B1 al giorno, dopo 15gg. circa cominciai a vedere i benefici. Dormivo, ero più serena, ero meno soggetta agli sbalzi di umore, avevo voglia di socializzare, di “vivere”.
Dopo tre mesi di B1 interruppi e, pur permanendo un lieve beneficio, dopo due mesi ero ritornata come prima, nel mio incubo.
Ricominciai a gennaio del 2018 a riprendere 300mg di b1, ma a febbraio iniziai ad accusare bradicinesia e un po’ di rigidità agli arti inferiori nel fare alcuni movimenti, della qual cosa informai la mia neurologa che raddoppiò la dose di b1 mantenendo inalterata la cura. I risultati sono stati strepitosi, dopo 6 mesi mi sento bene come prima della diagnosi, vivo non in un tunnel, ma in un mondo colorato. Certo non tutte le giornate sono splendide: un dispiacere, un conflitto distrugge tutto, ma so che il giorno dopo è carico di sole e posso ritornare a sorridere
2 likesReply
GioCas
GioCas in reply to albachiara2
an hour ago
Traslation of this beatifull success story from Albachiara from Italy too.
“I am Albachiara, I have difficulty, despite the translator, to understand many posts, but I want to give my contribution on this topic of B1 and say a big thank you to Dr. Costantini.
Parkinson's was diagnosed in early 2016, but the first symptoms occurred a year and a half earlier.
I have been treated since January 2016 with a CPR per day of 8mg requip and a 5mg jumex one.
But the non-motor symptoms did not improve: the mood swings, the crying, the frustration, the insomnia remained unchanged and I did not want to take psychotropic drugs, nor go to the psychologist, I seemed to fight daily against the windmills: it was like walking in a tunnel and never seeing the light.
Then I read about this therapy proposed by Dr. Costantini and I thought it could be the turning point I was looking for.
I told my neurologist that she had me start with 300 mg of B1 a day, after 15 days. about I began to see the benefits. I slept, I was more serene, I was less susceptible to mood swings, I wanted to socialize, to "live".
After three months of B1, I interrupted and, even though I had a slight benefit, after two months I had returned as before, in my nightmare.
I restarted in January 2018 to take back 300mg of b1, but in February I began to accuse bradykinesia and a bit of stiffness in the lower limbs in doing some movements, of which I informed my neurologist who doubled the dose of b1 while maintaining the cure. The results were amazing, after 6 months I feel good as before diagnosis, I live not in a tunnel, but in a colorful world. Of course not all days are beautiful: a displeasure, a conflict destroys everything, but I know that the next day is sunny and I can return to smile.”
Thank you very much Albachiara!
Grazie per la tua bellissima storia di successo Albachiara !
Here's the update. After taking 4 grams of B1 for three weeks now on day sixteen I ate eggs and pancakes for lunch and my dyskinesia was through the roof. But yesterday on day 17, my on time seems to have been extended by an hour and change and barely noticeable dyskinesia and today day 18 has been an even better day. I can actually sense the positive effects the B1 is having on keeping the dyskinesia at bay and extending my on time and relief of fatigue and increase of energy. I've actually felt like increasing the dosage in hope of getting even better results, but I'll wait to see what Dr C says, I'll write him tomorrow.
Ernie,
That is fantastic news to hear that you are responding so well to B-1 at just 18 days in!
I like that you are resisting that urge to self increase your dosage and opting to stick with Dr. C's suggestions!
Art
B-1 seems to affect everyone in a different way as far as what they first notice and I have heard as much from the people who are taking it. Sense of increased ability to smell seems to be a later symptom improvement or it may come and go before it comes back. Some common first notices are brain fog seems to be lifting, energy level increases, anxiety level decreases significantly, balance improvement, a feeling of improved strength in legs, reduced shuffling, improved ability to focus, reduction or elimination of constipation and a lessening of dyskinesia.
Take a look at Erniediaz1018 post as he has fairly recently started on B-1 and is documenting any changes he notices as he notices them. This is an "extremely useful" thing to do because many people get improvements and don't even realize it until other people start telling them something like, you're hardly trembling any more. This is one of the reasons that Dr. C requires the videos of walking, talking, pull test and sometimes writing as this gives a reliable record of how you used to be compared to how you now are. I did not think that people could forget these important symptoms until I saw it for myself in a friend of mine who had forgotten many of his symptoms!
The other advantage of documenting like Ernie is doing is that you can give Dr. C more accurate feed back that will help the two of you to zero in on your optimal dose much quicker!
The thing with PD is that some symptoms are so apparent that your focus may be on those that are the worst and the more subtle symptoms may improve and not be noticed right away and then one day you just realize that you can now do something that you were no longer able to do just last week or maybe something as simple as you realize that you haven;t cried in a month when it had become a pretty regular occurrence!
A month ago we kicked around the idea of creating an Excel spreadsheet, listing usernames down the left column and various data points such as date of diagnosis, stage of progression, date began thiamine, dose, etc. across the top row where people could translate/quantify their experience into a number, thereby condensing the outcomes into something more efficient to read, but, while a few people thought it worth a try, it never caught on.
I think it would have value beyond being easy to read. It would inform people as to what to expect, how to better manage their dosing, and after a few months we would all learn to what degree it's benefiting how many people. (It would be another open label, uncontrolled, unblinded study which sunvox could critique. Just kidding.)
Kind of a wiki for PWP.
I had a couple email exchanges with the HU administration asking if we could put a banner on top of all new threads announcing the location of this spreadsheet because otherwise everybody who came on after the thread was started, would not know about it. I suppose they could all get redirected, but it's a moot point because this website cannot accommodate a multi-user spreadsheet. It would have to be located elsewhere such as Google Docs, although I don't think going to and signing in at Google Docs would be a barrier.
I built a spreadsheet and in so doing realized we would have to agree on definitions of all terms, how to grade outcomes, and we'd have to list all symptoms, each to be graded, so it would not be a small project.
I guess people feel reading 2 or 3 paragraph descriptions is fine. It's getting a little harder to follow because now that the thread has 500 replies, there are new discussions taking place throughout the thread.
Do you know if this website has a way to make a read only post? I was thinking that maybe I could move people's B-1 results there because they are getting very numerous now and that would make it easier to find and follow those specifically.
Also how did you get a response from the administrators? I had messaged one months ago that RoyProp had suggested to contact, I think it was CPT Helen, but she never responded ?
>Over the past 3 months I have experienced improvements: gait, arm swing, can "snap" fingers again, quality sleep. My tremor was already managed by Selegiline.
> I am interested in weaning off of Selegiline to see if Thiamine and/or Glutathione compensates. Studies have shown that Glutathione placebo effect can be as strong as the treatment (Mischley) however, improvements related to the presence of Glutathione circulation cannot be fully self-reported/measured and continue, despite any 'noticeable' effects. MRI studies have show 200% increase in brain glutathione after 3 months' trial. I continue Glutathione despite lack of "visible" impact. I do attribute my recent "movement" improvements to high dose Thiamine therapy (Costantini) and have gradually added nutrition supplements back into my protocol. Dr. C recommended suspension during the 3 month trial period. I am grateful for Dr. C's attentiveness and generosity.
>I exercise everyday and cling tight to research in and out of this tremendous community of HealthUnlocked.
JerMan22,
Where you are right now is 100% exactly why I wrote question number 50 to the Thiamine FAQ page yesterday ! You are just one in a growing line of people testing thiamine who run into this issue. For many this can be the very critical make or break point for them as regards the thiamine protocol. Some, at this point decide that B-1 is making their PD worse and quit because they are not in touch with Dr. C who would tell them that no, this is actually and indication that it works!
If you have not already, I highly recommend that you read FAQ's 49 & 50 at this link:
The problem is that many people try thiamine and don't do all of the reading that you are doing and they don't contact Dr. C and then they say it didn't work for them after a month or two. There is so much potential benefit with B-1 and to me, it is just sad to think that any PWP who could have really benefited from taking it at the correct dose, misses out on that great opportunity!
Art
First off I would like to let the forum members know that I have added a question and answer to the thiamine FAQ page. It is number 51 and should be interesting and important to anyone who is currently taking B-1! Dr. Costantini answered it last night.
park_bear has mentioned on several occasions that dopamine agonists come with the potential for some serious and definitely unwanted side effects. My understanding of dopamine agonists is that when you are on a levadopa product like Sinemet, as time goes by, you will likely have to keep increasing the dose in order to maintain the effect and eventually Sinemet alone may no longer be able to do the job and this is where the dopamine agonists are often initiated if not sooner!
I had been thinking about that scenario in the back of my mind since park_bear first mentioned it and this past weekend it sort of drifted into my forward thinking. I was thinking that Dr. Costantini has maintained that his B-1 patients have not progressed as long as they have stayed on thiamine, at least to the best of his ability to test for progression. I was thinking, if he is correct and there is no disease progression, then there may possibly be no need for increased Sinemet usage and then ultimately no need for a use of the dopamine agonists? Wouldn't that be great?
So I posed the question to him on Sunday as to whether his B-1 patients have ever had to increase their levodopa usage once they have established their correct dose, gotten very good symptom relief and shown a very good response to the "pull test"? This was his answer:
'Once a person has established the correct dose of thiamine / B-1 and is stable, including a good response to the Push Test and a good reduction of symptoms, this person will never need to increase their other PD medications such as Levodopa / Sinemet or other drugs.'
I further asked if the patient does not need to increase their levadopa dose, is there any possiblity that they could lower their current levadopa dose? This was his answer:
There is a possibility that these standard drugs may be reduced especially if they have side effects.
I don't know how others feel about this and I am already more than impressed with his
well, lately, maybe the past few weeks, i have forgotten to take a dose of c/l, because im feeling well and lose track of the time, and the next thing you know its been 3 hrs since my last dose, instead of my usual 2 hrs. so i end up taking like a third if a pill at that time and then the other two thirds of the pill an hour later. so that puts me back on track with time, but ive essentially skipped a dose. in another few weeks, it will be 3 months since i started taking the thiamine. so ill wait until then before i make any changes to the dosage.
also dr c said that after 3 months to contact him, and i could try increasing the thiamine slightly. i am taking 1 gm/day. the capsules are 500 mg. i assume if he says "slightly," he dose not mean to increase it by 500 mg. but it dosent look like the hcl thiamine comes in a lower dosage (100 mg or even 200). what is the hcl? and can other thiamine be substituted?
thanks for the link. it doesnt say hcl on the front of the bottle,but it does in the list of ingredients. i also found it in natures way brand that is even cheaper.
Where did you find it at that great price as I would like to add that link to the "thiamine primer page" since it appears that some people will need the 100 mg capsules to help fine tune their dose. All of the Nature's Way bottles I found cost a little less, but they only had 100 capsules in them Compared to Swanson's house brand which had 250 capsules in it.
Thanks for getting back to me! I'll add the Swanson 100 mg / 250 caps to the thiamine primer page since it looks like those may be needed in some cases in order to fine tune the dosage and they have the best price I have found so far.
Height 170cm, Weight 70 kg, Dx 2011, on Rytary, I do yoga and walk quite a bit.
I first emailed Dr C just 9 days ago.
He responded in 2 days, and I began taking 2 grams of B1, morning and noon.
End of first day, I felt clear-headed and my sense of smell returned.
After 2 days, I felt jittery, my head was foggy, and I stopped.
Then I emailed Dr C again. He wrote back immediately: "Half the dose and start over on Monday with one gram every morning. Keep me informed every week. Soon we will find the right dose that is the one that will only produce benefit and forever"
Today I began taking 1 gram at breakfast.
I had another "clear head" today. Otherwise, I'm feeling well so far. I will keep this updated.
It sounds like you are going to get by on a relatively low dose! That's great! Good luck and if you haven't already done so, take a read of this post as well as the links to related threads. There is a lot of information in all of that, that will give you a good idea of what to expect and answers to almost all questions you might have about Dr. Costantini's B-1 Protocol! The recent additions to the Thiamine FAQ page are very enlightening and I will be adding another addition to that one very soon!
Morning update. This is my 2nd day at 1 gram. It just occurred to me that I'm sleeping better in general. It's amazing just how foggy my mind has been (due to PD and lack of sleep) without my realizing it. I was aware on some level that my sleep has been improving, but this morning my mind is able to process it. My sense of smell comes and goes, but the clarity is still improving.
That's it for now. I'll update as often as it seems useful.
Third straight day of improvements! I'm making a list of everything that I can think of that's improving. Major benefits include mood and energy, but also improved sense of smell, balance. More to come?
Continuing to enjoy new benefits every day. It's hard to put into words how wonderful this is, but I'll try. I woke up this morning after a good night's sleep, laying in bed and thinking about the future. Not the immediate future of struggling to get out of bed or getting myself to the treadmill, but the kind of future other people plan for: taking a train to visit my brother, writing another chapter in a book I started years ago, and maybe even starting a new one! Since I'm a writer by profession, the clarity of my thoughts means that I can do what I love best again, like a ballerina who's been given back the use of her legs. Speaking of which...
When I walk, I no longer lurch side-to-side, grabbing and leaning on things to keep from falling. My gate is so improved that I no longer even limp (except just before my L/C is about to wear off). My lower back no longer feels stiff, and the dull ache has almost gone away. This morning, when I got out of bed, I didn't have to plan it out like a prison break; it just happened.
My sense of smell still comes and goes, but it's 2 steps forward and 1 step back.
I was about to ask my neurologist to increase my L/C dose because it was wearing off half an hour too soon. But now, the gap is more like 15 minutes, so I'm going to wait to see if it gets even shorter. Maybe I won't ever have to increase it again?
I don't understand why anyone would NOT want to try this. Granted, I lucked out and got to my correct dose relatively quickly, but even if it had taken weeks or months, it would've been worth it. There's no real additional effort, it's dirt cheap, and you've got the world's leading expert ready, willing, and very able to help you at every step... FREE!
He is very dedicated to "all" of his patients and his protocol and puts in many hours of work to make sure that he responds in a timely manner to everyone he can. On one of the questions from the FAQ page that he answered for me this past weekend, Dr Costantini sent the answer at 3:00 am his time! I don't know of any other neurologist/doctor who is that dedicated to their patients!
I can't say enough good things about the man. To have such dedication when your ideas have yet to be widely accepted - and to do it without payment (from his overseas patients) is beyond remarkable. But he's seen it work, as have many of us, so there's no going back now.
I'm continuing to feel good. Some ups and downs, but mainly ups. I'm approaching my 2 week mark and I'm thinking of getting some B1 100mg capsules so that I can fine-tune my dose because I seem to be close. I'll report back to Dr C tomorrow and see what he thinks of that.
Generally, I'm finding more energy to exercise, and I'm increasing that regularly. My walking gate is better - almost back to normal. Before B1 it was about a 7 out of 10, now I'd say it's 9 out of 10. My sense of smell is back 50% of the time. I'm still enjoying my clearer mind!
Dr C started me at 2.5 g 11 days ago. After 3 days at that dose, my walking gate improved and a few other small things seemed better. After another day at 2.5 g, I began to feel jittery and tired, and the benefits went away, so I emailed Dr C. He told me to stop for 3 days and restart at 1 g per day. I restarted at 1 gram 2 days ago. The jitter and benefits are both gone.
Nothing very important to report yet. After reducing to 1 g I see no improvement over my "baseline" condition before taking B1. Continuing the experiment...
I was trying to follow up my iriginal post but I can find it! Anyway my husband was diagnosed in feb this year. I think we started BI in May. We went from 2g to 500g to 1g to 2g to 3G of B1. Taken in a divided dose. We gave each dose three weeks to evaluate and kept records of changes. We didn’t do three weeks on 3g as we saw a worsening of some symptoms. We have settled on 2g dived dise. My husband never failed the pull test so we can’t use it as a test. But his non motor symptoms have improved and his motor ones too but the tremor remains. He also takes sinemet three times a day. He still have a tremor so we are adding magnesium and then will add a b multi to see if we can reduce the tremor. I think I am confident it has helped especially with fatigue and concentration as well as mood. I am hopeful that it will also stop the progression but can’t be sure yet. We spoke to dr c for our initial dose but the have been testing the increasing dose on our own but asked him if we could try increases. He advised to watch for any worsening. We will have to wait and see now but it has definitely helped. Thanks everyone for your help and advice. This forum has really been a Huge help and support to me. I love you all and wish you all the best in you efforts to find answers. Thank you especially to those of you who so generously share your knowledge, research, time and experience. I really appreciate it and I can’t tell you how much it has encouraged me and helped me to keep going.
Congratulations! I'm glad to hear that the two of you are finally zeroing in on the correct dose and I'm glad that you stuck it out with B-1. Not always easy, but certainly worth it when you consider the benefits are potentially for life!
I had been wondering how you guys were doing as it had been quite awhile since we heard from you and your husband. Thank you for the update. Good luck and please keep us posted!
Art
Diagnosed about a year ago. Early stage PD. This forum is a life-saver! Following Dr. C's thiamine recommendation (1g in morning). Started 5 days ago. So far, so good. Will update this page when I see any changes. Thank you everyone for all the valuable information you contribute. It really makes a difference.
Good luck! I also appreciate this forum very much. I have been taking B1 for four months and have found it beneficial, along with several other vitamins and supplements. I am healthier today than when I was diagnosed. Keep us informed about your progress.
I have been lurking on this site for quite awhile and decided to introduce myself and tell my story with the hope of encouraging others . I am 71 and was diagnosed in May of 2017. I felt I was living in slow motion with little energy and lots of confused thoughts. Fortunately I have a doctor who supports alternative and natural supplements. I did go to a neurologist who confirmed the diagnosis and said I would be good for about five years. I left feeling hopeless.I returned to my regular doctor and he tested my neuro transmitters. He recommended tyrosine, and gaba.
I listened to a podcast on Sam-e. blog.parkinsonsrecovery.com... I added it to my supplements andI began to feel better. Then I read about high dose thiamine which I started in March 2018. I got my energy back. I now swing my arm when I walk and turn more easily in bed. My doctor says my facial expression has returned and I feel so much better.
I added fast walking daily and try to eat a good diet. I still have a slight tremor and have difficulty with writing but overall, I feel that am so much better. I am experimenting with mucana and keep a positive attitude. Thank you to all on this forum who continually post advice and encouragement. You have been so helpful .
The one bit of advice I got from neurologist was: Don’t let Parkinsons define you. I haven’t.
Thank you for adding your results to this thread! They will help others who are considering testing thiamine!
Art
This is a direct copy of a post by Berylhorsey1
on 9/21/2018
Berylhorsey1
5 days ago
I know it is devastating. I was diagnosed in 2012 and went to the doc thinking I had a trapped nerve!!!!! This year I have used cbd oil (in the uk this is the legal part of the Canabis plant) and a large dose of vit b1 thiamin. Do some research on dr, Constantini with reference to the B1. All very interesting. I feel soooo much better than I did last year. I have no tremor now, feel full of energy and feel a lot more stable. Still able to play with my six grandchildren which is fab. Try not to worry, but do be proactive about other remedies available. Good luck
• in reply to
This is an update post by Berylhorsey1 on 11/01/2018 :
Berylhorsey1
Berylhorsey1
28 minutes ago
I am also on Dr c’s thiamin, but I also take cbd oil. This gives me loads of energy. I have been on the thiamin for about two months, and I notice improvements every week. I am now sleeping 7/8 hours a night.
Art
• in reply to
This is an update from Berylhorsey1 on 11/20/2018 :
Berylhorsey1
Berylhorsey1in reply to RobynS
12 hours ago
I have been on the thiamin 2000 mg and each month brings a new improvement. Do some research, speak to your gp. Mine said it would do no harm so worth a try and the results are fantastic.
Just sent Dr C an update after 6 weeks on current dosage (1.5ML Monday-1ML Thursday) as my wife noticed some degrade in some symptoms. Just got the reply back from Dr C :
" Your pull test seems better to me than before. Anyway, you suspend the thiamine for a week and then tell me how you feel."
So I have a week off the sauce and we will see what happens. . . !
UPDATE: 2 weeks into Thiamine (1 gram/day in morning, per Dr. C). Tremor getting worse. Wrote Dr. C and he said to discontinue Thiamine until 10/1 and report back. No other problems w/the Thiamine. Wonder if it's just natural progression of disease. Going to follow Dr. C's advice, but actually was hoping to hear an increase in Thiamine.
• in reply to
cirriped,
I think you are making a good choice to follow Dr. Costantini's suggestions!
On the thiamine FAQ page, question and answer #50 deals with this issue. As a reminder, all answers are directly from Dr. Costantini.
I pulled the following post off of a non PD forum that was posted today, 9/29/2018 by a lady named Karen :
I was diagnosed with PD in 2010 at age 50. I managed to continue work for six years but struggled to do my job in that 6th year which was extremely stressful. Trying to hide my diagnosis was additional stress. Having to stop working only increased my depression and anxiety. I am single and live alone and was struggling with day to day activities. I envisioned my future as residing in a nursing home. I found little relief from PD medications and only experienced new problems from their side effects. I was given more medications to treat the side effects.
I feel like a different person now. Still far from who I was before PD but now I can do my daily activities slowly and no longer suffer anxiety, off the Xanax I took for 3 1/2 years, and minimal depression. I get the blues on occasion. I only take Selegiline 5mg twice a day as a prescribed medication. I was prescribed 7 medications previously.
I started high dose B1, Thiamine, June 2018, taking 1/4 teaspoon in water, twice a day. I did not notice any change in my symptoms. I increased it to 1/2 teaspoon in water, twice a day, still no change. I continued taking it anyway. I then purchased capsules, 500mg. I take two, twice a day. I started noticing that I was using my right hand for things I could not do before. The changes have been subtle but to me significant, giving me hope. I have more energy and feel more alive. My movements are more fluid.
I must add that I also changed my diet. I have been vegetarian since I was 16 but now I am, or try to be, gluten free, dairy free, plant based diet. I suffer chronic pain and wanting to decrease inflammation. I also added the use of low level red light therapy. Not sure what is working but I feel I have turned a corner and instead of declining I feel I'm improving, very slowly.
Thank you.
I believe 4g day is therapeutic dose. Don't understand why lower dose is better for some
• in reply to
RoyProp,
Apparently 4 grams is your therapeutic dose, but there can be many reasons why people may need more or less. One reason is the condition of the gut in which poor motility can result in poor absorption and may require more while a gut that is still in decent shape may allow better absorption and require less thiamine.
Clearly, 4 grams is too much for some people. I would think the vagus nerve would also be an important factor as it may possibly act as one pathway to the brain and any issues with that pathway may also require a higher dose. Dr. Costantini is very clear on the idea that the quicker you start to see a deterioration of symptoms after starting B-1, the lower your required dose will be. So if things start to improve and then turn bad all in the first week or so, the lower your required dose will be.
OK, I'm happy to report that my search for the "correct dosage" has been successful. The story about how I found it has a little twist at the end, but is otherwise similar to everyone else's experience. Before contacting Dr C, I foolishly tried to guess my own dosage. I guessed 3 grams, but after 2 days I knew that it was too much, so I backed off of B1 and emailed DrC.
Based on 3 grams being too much, he suggested 2.5 grams, which also proved to be too much. He then reduced me down to 1 gram, then increased it to 1.5 grams.
1.5 grams felt "sort of ok" in that I thought that I *might* have felt a bit better. I saw some small improvement in various small things. When I told this to him, he seemed satisfied and told me to stay on that dose and to report back in 2 months.
Well, I wasn't satisfied, so I bought some 100 mg B1 capsules and started upping my dose slowly every other day. I've also expanded the times that I take B1, so that it's more evenly spread out during the day.
My schedule looks like this:
8 am --- 1 gram
noon --- 0.5 gram
3 pm --- 0.2 gram
6 pm --- 0.1 gram
Total: 1.8 gram
This seems to do the trick. Before, when I was just taking the first 2 doses and taking 1.5 grams, I felt it wearing off late in the day. With the 100 mg capsules I've been able to fine tune it, and now I'm feeling fantastic. Loving it!
I'm glad to hear that you feel you have found your optimum dose already.
Have you passed that on to Dr. Costantini yet?
I've seen in the past where he had a patient who was able to get by on just a morning dose and he told them that the one morning dose was fine. I think most people would be happier only taking one or two doses per day and for some, four doses per day may be a little harder to stick with. You are the first person I have seen that felt they needed to divide the daily dose into four unequal parts.
Since you feel you have found your optimal dose, can I ask what benefits or symptom improvements you attribute directly to the B-1?
It just made sense for me to try this. Not saying anyone else should.
Benefits?
I'm working on a more complete answer. So far, my sense of smell's back, my vision is sharper, many fewer aches, better overall coordination, writing, typing. It's not 100% by any means, and it comes and goes a bit. That's why I'm experimenting with dosing schedules.
I noticed sharper distance vision this morning on my walk. It might be because I'm breathing more deeply now, getting more oxygen to my eyes. My wife asked me yesterday if I was out of breath, but no, I was just breathing deeper without noticing.
Another update. More improvement in walking. I'm now walking a mile at a time, and I do that 3x a day! Hard because of gait issues, but definitely getting better. Am I able to walk more due to B1, or an improved diet, or because I was hopeful enough to push myself (the placebo effect)? I think due to B1 and diet. I know my diet's helped a lot over the last 9 months, but today (my 5th since finding my correct dose) felt really good (ok relatively good). As I type this, I believe that my typing is quite a bit better, too. I had noticed that yesterday, but by the time I went to bed, I'd lost it again. We'll see how today goes.
25/9 until 03/10 : 1 gr in the morning and 1 gr at lunch time. I was getting stiff neck and leg muscles, pain around the knees, and increase tremors. Dr. Costantini recommended to lower the dose. Since 04/10 I'm on 1 gr in the morning only. Now my knees don't ache, the stiffness and tremors are less. There is also a little improvement in my voice and my posture.
What you are saying is very important because without being in touch with Dr. Costantini to help guide you through this process of trying to find your optimum dose, it would be very easy to assume that B-1 doesn't work for you as your symptoms worsened and fairly quickly! The reality is that even a worsening of symptoms still show that you respond to B-1 and it is just a matter of Dr. Costantini figuring out your symptom response to the dose you are taking to help define your optimum dose! Time consuming and often frustrating, but a necessary part of the process on the road to improvement!
Thanks, Art. I must say that at the beginning I thought of trying on my own but after reading your posts and that of other members of this forum, I understood the importance of having Dr. Costantini's guidance. Thanks for taking the time to write here. Regards, Gio
This a direct copy of a post by Puneetforjosh on 10/07/2018 about his father who started taking B-1.
Puneetforjosh
Puneetforjosh
a day ago
B1 WORKS.my father's voice came back.he started walking. dr C is great.should be given Nobel prize
• in reply to
This is an update post to the post just above by Puneetforjosh. This update was posted in another area of the forum on 11/22/2018:
Puneetforjosh
Puneetforjosh
2 days ago
Start thaimine atonce.my father at stage 5 recovered to stage 3 in 75 days.its a miraculous cure.write to constantini
Yes, I have heard people refer to "rock steady balance" or "noticeably improved balance", in fact, this is where Dr. Costantini uses the "push test" to help fine tune the dose. A properly adjusted dose will produce a good response to the push test as well as diminished symptoms. Again, as always, this is why it pays dividends to stay in constant contact with Dr. C while trying to find your optimal dose! Look at Q&A #35 and #48 at this link:
Please bookmark the link or alternatively you can easily find it by clicking on my icon!
Art
This is a direct copy and paste of a post by EddyTF on 10/09/2018 about his dad who is testing B-1. Still working on fine tuning the dose, but definitely benefiting! Hopefully he will update!
EddyTf
EddyTf
14 hours ago
Yes, my dad has a lot of balance problems, B1 is helping a lot, he improved a lot when starting b1 and at one point at recommendation of Dr Constantini he stopped taking B1 because of balance issues to see how it influences. His balance issues worsened a lot every day until after 5 days it was so bad that he started again taking B1. It improved again during the following days and again after 5 days seemed to have reached the best result so far. Recently (couple of months later) his balance worsened quite a bit again though. This week he went to see his neurologist because he hardly could stand up anymore without holding himself to something. His neurologist suspected possibly blood in his brain due to the sudden change in balance issues. He is taking two different blood thinners (heart issues), and so neurologist suggested he should drop one and cardiologist agreed to stop one. Next day his balance improved already. I'm not sure if this is placebo effect or not, because I doubt the blood would disappear out of his brain just like that? Anyway, soon he will do a head scan to confirm whether his balance issues are due to blood. But in short, yes, B1 was/is helping a lot. Not to the point of being 96% OK like Constance, but I guess we will find out whether it could improve further if part of the issue was from blood "leak"(?).
After some probs with self administered B1 contacted Dr Costantini he promptly replied explaining that people with an Anglo-Saxon back ground are more prone to adverse reaction to Thiamine then people of an Italian heritage
I did as he suggested and after 20 days on 500 mg I have no tremors and feel great .
Follow up advice received very Promptly from Dr Costantini twas to continue this same routine for two months and then send him a video of me talking and doing the pull test he said I would seeContinual progress
I thanked him on behalf of all of The health unlocked PD Clan he is a very large hearted man I hope we can help iwith his research
This is a perfect example of why accepting Dr. Costantini's help can be so much better than trying to do the B-1 protocol on your own with no direction!
Btw, you are the 25th person on the B-1 protocol to report a reduction in tremors and in your case it is now, "no tremors"! That is awesome!
I'm sorry I don't know I recommend you contact Dr Costantini and include your personal details ect if you want to try Thiamine
Be Positive
Sunnysky
This a direct copy and paste of a post by jambar on 10/11/2018:
jambar
jambar
2 days ago
I was taking 2 grams per day when first started HD Thiamine but found some problems getting worse, contacted Dr Costantini and after stopping for 5 days am now taking 1 gram per day and so far has been a big help.
This is a direct copy of a post by Livin_MY_Life on 10/12/2018 :
Livin_MY_life
Livin_MY_life•
18 hours ago•10 Replies
My journey to diagnosis was (retrospecively) not so long. My symptoms started with internal tremors about 5 years ago and progressed slowly from there. The internal tremors are successfully managed with propranolol. My secondary symptoms started in my right arm and were initially thought to be bercitisis. The pain progressed down my arm and eventually resulted in micrographia and extended down into my right leg . I do not have external tremors. My balance is good. While hiking in NH my sister noted that my right arm wasn’t swinging while I walked. I knew at that moment that I had Parkinson’s. There was no differential. My physician was kind and diagnosis was delayed with testing and what not. I spent the time ensuring my long-term affairs were in order. 3-years later my diagnosis finally came following a positive response to Sinemet. I have responded well and continue to work full-time. Research led me to B1 theory and I have jumped on board. After a few months of less than desireable response to the oral regimen I launched into the IM regimen. After an initial adverse reaction on 50mg IM (too much for me!) I am taking 20mg IM 1x a week with some pretty amazing results!! I am hoping to slowily increase my dose over time. Right now I am experiencing an overall feeling of well being combined with a decreased need for sinemet (25/100 2xperday) with increased sense of smell, improved sleep, and decreased pain in my right arm and shoulder, I exercise some. Mostly biking and yoga. I remain positive and hopeful that I can remain ahead of the game and have been erasing negativity from my life. Each road is unique and owned by the one traveling the path and I am honored to be allowed to join the journey of others. I pray daily that while I am hopeful, I remain humble and accepting of what my path brings. Thank you all for sharing your unique experiences.
Hi Art, you beat me to the punch! I was just reading through all the posts and here I am I want to add that I have been in close communication with Dr. C since June. I am one of the Angelo Saxons (French and Scott decent) who is extremely sensitive to B1. All meds for that matter. Anyway, I became frustrated by my intoleraance and the cost associated with the pills. I have an array of capsules all different strengths and was ready to through in the towel, but not wanting to “give up” when hearing all the positive stories, I went the injection route. Dr. C suggested I start on 50 mg IM once weekly and my 1st week was miserable! I had nausea, insomnnia, cloudy thoughts, headache, and more...I was clearly over medicated. Dr. C advised i hold the next dose and wait an additional 4 days. He advised I cut the does in half. I was so scared of a similar response that I decreased even more to 20mg. Within 20 minutes of the 1st does I could feel the positive changes! Over that 1st week I experienced awesome sleep, improved smell, improved arm swing (still not great) and a decreased need for my LD. I remain of 20mg once weekly but I think it will bump up soon. No side effects and feeling good!
Thank you for posting your update because these are so useful for the growing number of people who are considering testing B-1! Having your post in this thread will get increased exposure because this thread is very heavily followed by many members who I can see are not regular posters and I believe is one of the first steps that people take before ultimately testing B-1 themselves! People love results and B-1 does seem to get some good results in many people who are testing it.
For people reading this thread, it becomes clear that initial results definitely vary from person to person and the further you read into this thread the more you realize that finding the right dose and time are showing incredible benefits for PWPs!
What a difference the correct dose can make in terms of response to B-1! Just 7 months ago we didn't really understand enough to accurately know how critical the dose can be and we weren't in contact with Dr. Costantini enough to have sufficient input from him, but now it is clear that the dose is very highly individualized, some people are highly sensitive to B-1 and finding the correct dose does not happen over night for many people testing B-1!
I think the most important lesson at this point is that the people testing B-1 who do the best and find their optimal dose the quickest are the ones who stay in contact with Dr. C through all of the ups and downs of testing B-1 on their way to finding the correct dose. The lucky ones hit that optimal dose on the first test, while the majority do not, but generally speaking for the majority, it is definitely worth the effort to find the optimal dose considering the potential difference it can make in the rest of your life!
I have been taking B1 for a month on and off as I try and sort out an appropriate dosage. I will update as I progress
This is a direct copy of a post by Syncletica on October 31, 2018 :
Syncletica
Syncletica•
a day ago•16 Replies
I started Dr. Costantini's Thiamine-HCL protocol on February 14, 2018. At that time, my UPDS score was 47. After experimenting with dosages per guidance from Dr. Costantini, my most recent neurological examination indicated that my UPDS score is now 27! I am taking 2 grams of T-HCL per day in divided doses, along with 25/100 Sinemet (2 tablets, three times per day).
I am grateful for all those on this forum who have collated and shared the information on T-HCL.
Art, I take 2 grams a day. One problem I have is keeping my food down when I eat. Sometimes I throw up. My other PD symptoms have lessened but this swallowing problem is still with me. Anyone found relief on this program?
I don't know if you are taking sinemet, mucuna or similar with the HDT, but the different forms of levodopa have been known to cause nausea or vomiting. If you have found your optimal dose of B-1 and are stable, it may be possible for you to reduce your levodopa dose as Kia has recently done after a recent fine tuning of his dose by Dr. C. This is something that Dr. C has previously said on the thiamine FAQ page. I believe it was #50 or #51 that discusses this option. If you think this applies to you, just drop Dr. C a quick email asking him about this and if you think it doesn't apply in your situation, write him anyway to get his take on your situation.
Dear Jim, I've never seen this kind of disturbance before. I think it can also be independent of Parkinson's disease because while the tremor that is usually the most resistant symptom to any treatment has improved, the swallowing disorder has remained stable. The first thing you have to do is have a fellow gastroenterologist visit you and then tell me the result. Then get help from someone to make a video of how you talk, walk, and pull test that can help me understand better.
Alternatively you can increase the thiamine to three ranges per day. If it works, well, otherwise go back to the previous dose. After that you could also try an increase in levodopa. Let me know
Il 9 novembre 2018 alle 2.07 attyjburns@aol.com ha scritto:
Dear Dr. Costantini;
I wrote you last May and started your program of taking Vit B1. I started at 500mg and am now taking 2 gram. (1 gram twice a day).
I am 83 yrs old and weigh 185 Lbs and am 72 inches tall. My tremor has almost disappeared. One problems that remains is swallowing. When I eat sometimes the food comes right back up as if I am throwing up. Do you often see this problem with you patients?
I'm inclined to stay at 2 grams but may go to 3 grams to see if this i s closer to my optimum dose. Any suggestions? I don't have a movie of my symptoms because I am not computer literate.
God Bless and thanks for you help.
So do you have an existing condition like GERD or do you get acid reflux? If so, perhaps that is the cause? Are you on a protein pump inhibitor (PPI)? Do you ever feel as though there is acid in your throat, especially if you bend over deeply?
I get what Dr. Costantini is saying about the tremor improving, but not the swallowing issue because if it was a swallowing issue related to PD, it would have improved long before the tremor improved.
I started by taking 100mg of allithiamine daily for the month of January (2018) which made me feel pretty good, stronger than I had been with more energy. I started on 100 mg injections (prescribed by my PCP who is a naturopath) in February which I took twice weekly then every three days until May. I stopped for three weeks because I felt it was exacerbating my dyskinesia without any more improvement than I had seen on the allithiamine. After about two weeks I started to feel weak and sluggish, so I started again at a lower dose. I now take 80 mg injections twice weekly- every three days and 100 mg was too much- and I feel pretty good. I know I am better than I was last fall. Prior to starting I was needing help getting my groceries to the car and I was using my handicapped placard. I was feeling very fragile. Since January I exercise far more and I haven't had help with my groceries or used the placard this year. Today I ran through our field with my five year old granddaughter and held and walked around with her four month old sister, and made lunch for seven people. That is not something I could have done last fall. My balance is better, I turn better in bed, I no longer aspirate food when I swallow (this was a minor problem, but it happened regularly) and I no longer feel I am taking my life into my hands every time I take a shower. I still struggle with slowness and rigidity at times and definitely with dyskinesia, but I am better and some of the improvement has been very subtle and gradual.
I have a very small clue about how hard you have worked to get to this place! A very good place of renewed hope accompanied by positive results!
To me, the very best part of all this is not so readily apparent and that is the fact that you are responding to HDT and that very likely means you are taking your life back bit by bit and you may have put a halt to any further disease progression! You have to feel good about this, because I do just hearing it and you are living it!
Yes, it is all exclamation points because I am very excited for you and your new life ahead!
Thank you very much for posting your results, I felt like I was holding my breath as I read it hanging on each word and hoping for these results! This will give hope to so many!😊
The following two posts were made by Fallenirish on 11/222/2018 :
Fallenirish
Fallenirish
2 days ago
Hi Triciedee,I have been using HDT for about 2 months now and I have noticed that I feel stronger and have more energy ! Additionally, I take fewer doses of C/L - from 5 to 2 or 3 good luck
Reply
Fallenirish
Fallenirishin reply to Trixiedee
2 days ago
I was diagnosed about 2.5 years ago but I had symptoms for at least a 1.5 years prior to that. I am almost 72, and I take 1500 mum x 2/ day
The following post was posted by DianeF on 11/22/2018 :
DianeF
DianeF
2 days ago
I am highly skeptical about fads and cures and started thiamine hcl about 2 months ago not expecting any results. I am happy to say I have more energy and feel better than I have in years. I didn’t realize how foggy I felt until that feeling cleared with the thiamine. I did have to play around with the dose and couldn’t tolerate the highest dose recommended, but again, everyone with Parkinson’s is a little different. My last neurology exam was “normal”.I also consulted with Dr. Constantine by email. He is very gracious and accommodating.
Thank you for starting this post and for all the work you put in summarizing the high dose thiamine protocol.
I was diagnosed with PD in June 2016, 2 1/2 years ago, but I had ignored (denial stage) mild symptoms of PD in 2014. I didn't start taking PD drugs until Feb. 2017 when I started to lose my balance and fell off my bike going uphill. After a bad fall in April 2017, I stick to pedaling on a stationary bike (Pedaling for Parkinson's 3 days a week) and try to get in 2 days a week of walking.
I don't have resting tremor. My major problems are balance and anxiety. I take 1 1/2 C/L 25/100 4 times a day. I started on Thiamine Nov. 23, 2018, after emailing Dr. Constantini. Dr. Constantini has been very responsive. I emailed him at night and got a response by the next morning. He recommended for my condition, my onset, and my weight 1gram of thiamine HCL/day, in the morning. I am to contact him again in 2 weeks, or before if I experience any problems. No noticeable change yet in balance and anxiety but I am only 4 days into the therapy. I did get my best night's sleep in years on Day 2, sleeping almost 7 hours straight, while I usually awaken one or two times, so I am hopeful.
I bought my thiamine capsules from Vitacost (vitacost.com/vitacost-vitam... $29.99 for 300 capsules 500 mg each, free shipping in the US.
Dec. 9, 2018:
I am two weeks into HDT, taking 1 gram per day first thing in the morning. My Pull test score improved from a 2 (retropulsion, needs to be assisted to prevent a fall) to a 0 (recovers independently, may take 1 or 2 steps or an ankle reaction). My big issues with PD are balance and anxiety. I am a little less anxious than before HDT but am still anxious in a public setting (left leg will shake uncontrollably sometimes when I try to walk). I was able to walk independently at home for short distances without holding on to a counter, my walker, or my husband's hand. My Physical Therapist saw me for the first time one week before I started HDT and she commented that my last visit (after taking B-1 for 2 weeks) was the best she had seen me.
I emailed Dr. C about my results and he said to continue with 1 gram B-1. He said, "your current dose will work for you giving 90% of its chances (possibilities) in the next 30 days, and in the next two months a further 10%".
I haven't done longer walks unaided since October, when I started wearing a boot and an ankle brace for a sprained foot. Even before that, I had balance issues but not as bad. I'm hopeful that I may get back to a more normal and more independent lifestyle in the next 30 days.
Jan. 22, 2019:
It's been two months since I started HDT and I have seemed to reach a plateau. The anxiety seems less than before and worrying about constipation is a thing of the past. I'm still not walking independently, which is my ultimate goal. I wrote to Dr. C and asked if I should be taking any other supplements. He said (translated), "continues the dose that has helped you so far", so I am continuing with my target dose (1 gram).
Fev. 26, 2019:
It's been over 3 months since I started HDT and I've noticed my non-motor PD symptoms have improved: I no longer worry about constipation, urinary urgency has decreased, anxiety has decreased a little, dry mouth has improved a little, and swallowing has improved. I wish I could say my motor symptoms have improved as much as my non-motor symptoms. I still need a walker or to hold on to my husband's hand to walk and I still fall too much. Having said that, I fall less often than before. I think my balance has improved a little bit as I can once again balance on my right leg (non-Parkinson's side) for 30+ seconds without holding on. I freeze less often. I no longer have action tremor in my hand when eating but that may be due to B2-Riboflavin (400 mg) that I added on advice of my Neurologist's PA. (I have never had resting tremor.) I will continue to take my target dose of 1 gram per day and hope for further improvement.
Good luck! It may take weeks or even months to feel the benefit, but it has helped me. In our world, a tie is a win for us. If you stay the same (no disease progression), you are winning even if you don't necessarily feel better...but I think you will actually feel better, too. It's a low risk/high potential reward decision. 😊
You are off to the best start because you are contacting Dr. Costantini from the start and that is the best you can do when testing HDT and trying to find your optimal dose because he has the experience of hundreds of patients that he has started on HDT in conjunction with their PD meds. One gram once a day is an easy dosing schedule. Good luck and please keep us updated on how your B-1 testing goes!
I am two weeks into HDT, taking 1 gram per day first thing in the morning. My Pull test score improved from a 2 (retropulsion, needs to be assisted to prevent a fall) to a 0 (recovers independently, may take 1 or 2 steps or an ankle reaction). My big issues with PD are balance and anxiety. I am a little less anxious than before HDT but am still anxious in a public setting (left leg will shake uncontrollably sometimes when I try to walk). I was able to walk independently at home for short distances without holding on to a counter, my walker, or my husband's hand. My Physical Therapist saw me for the first time one week before I started HDT and she commented that my last visit (after taking B-1 for 2 weeks) was the best she had seen me.
I emailed Dr C about my results and he said to continue with 1 gram B-1. He said "your current dose will work for you giving 90% of its chances (possibilities) in the next 30 days, and in the next two months a further 10%".
I haven't done longer walks unaided since October, when I started wearing a boot and an ankle brace for a sprained foot. Even before that I had balance issues but not as bad. I'm hopeful that I may get back to a more normal and more independent life-style in the next 30 days.
Although Dr. C feels you will get those results in just two months, many have reported new benefits for months after that period of time. I hope your results continue to increase with HDT!
Thanks Art. I really appreciate all the work you have done summarizing HDT and the helpful links. Without this I don’t know if I would’ve tried HDT.
Dr. C is amazing! His responses to my emails are very quick and you can tell he cares. I am normally skeptical about “cures” for PD because I feel the person is trying to sell something to me and profit at my expense. Not only does Dr. C not sell supplements but he also doesn’t charge for his email consultations.
I have now been on Dr Costantini's thiamine protocol for about a month. After two weeks I had to stop taking it as I had diarrhoea. I contacted Dr Costantini and he said it was a possible side effect, to stop the thiamine for a while and to eat boiled rice with parmesan cheese. This I did and the diarrhoea stopped. I waited another two weeks and then recommenced on the original dose of 1 gram per day. Everything now seems back to normal. I think it is a bit early to comment on potential benefits although I must admit to feeling quite energetic on the whole. My stomach is no longer alternating between diarrhoea and constipation and seems to have settled down to a good rhythm.
I'm glad Dr. Costantini was able to get the diarrhea problem eliminated!
Improved energy level and elimination of constipation are often two of the first benefits that members have mentioned and that means you are responding to HDT and that is a very good indication in terms of your future prospects for continued improvements!
I have minor tremor symptoms in non-dominant hand, more non-motor symptoms. I’m 54, weigh 160 lbs and active. Dr. C recommend 1 gram initial oral dose. After 1 week, little or no change in my symptoms that I can see, possibly a bit worse. Will give it another week and report back to Dr. C.
Hoping to detail my experiences here so others can learn from me as I have from others. Many thanks to those who have contributed and shared in this pool of knowledge and learning.
Hi Tenafterten! Have you amended your treatment and hows that going for you?
This is a direct copy of a post by Fnjb on 01/06/2019 describing her husbands very good experience with HDT under Dr. Costantini's protocol! It is also worth noting the fairly low dose of B-1 that her husband has found such benefits with!
B1 experience so far!
Fnjb
Fnjb•
an hour ago•2 Replies
Hello all. I have been tuning in to everyone's experiences since I joined in March 2018. At that time my husband was diagnosed with PD and as I am the more able one with computers I have been reading listening to your experiences and researching your valuable advice. We have had quite the roller coaster ride trying to separate chronic arthritis symptoms from PD rigidity symptoms along with the accompanying list of classic PD symptoms like insomnia, constipation and so on.
Finally after much trial and error with diet, drugs and B1, my husband seems to be in a better place. He is on 2x 100/50 Madopar tabs 3 times a day, a lowish dose of Palexia for his lower back pain and is currently taking 200mg of B1 hcl.
We seem to have most PD symptoms under control except for insomnia which has been a problem for him for decades. We started 500mg B1 at the end of July 2018 which was too high. With Dr C's advice we halved it. Then, we tried going up with worsening symptoms particularly tremor. Now after much coordinating of drugs and vitamins as of the last 6 weeks, my husband takes 200mg B1 per day with noticeable positive results. These include stronger voice, little to no throat clearing, more animated facial expressions, more energy, able to turn over in bed more easily, more social, more stamina - can mow the front and back and edge all in one go, and the list goes on. He will stay on this dose now to see what happens over the coming months.
I decided to add our experience as my husband's dose is a lot lower than the 4g initially suggested. My husband is 73 diagnosed 9 months ago but has had PD symptoms for the past 4 years at least. We live in Brisbane, Australia.
200 mg only, does not sound strange for me..., I also went down from 4g to 500mg feeling better and better. Seems I have to go further down soon. All dose changes under the guidance of DrC..
I think Swanson has the best price on the 100 mg thiamine hcl capsules which will be useful for those who require finer dose adjusting. The link is on the "thiamine primer page", in the links section. As far as I have seen, 200 mg is the lowest daily dose Dr. C has used, but just 6 or 7 months ago, that was almost unheard of. Maybe high dose thiamine (HDT) should be changed to LDT, for low dose thiamine! The fact that it is working is great, no matter what you call it!
Just before Christmas 2018 I began bi-weekly thiamine IM injections. I had tried the oral method a few times but the high doses upset my GI tract. I was treating myself with oral Allithiamine, 200mg three days per week was the recommended protocol. That was well tolerated but I did not notice much if any reduction in symptoms. That all changed when I started injections. I got almost immediate relief in several important areas. 1) I was having difficulty swallowing and was in process of getting a referral to a speech pathologist. That problem got a lot better after starting injections. 2) I experienced increased energy from the injections. First there was a rush that lasted for just the day of the injection. That has smoothed out, not as much of a rush, but the effects last longer, around 2 days. 3) I'm experiencing less muscle weakness on my right (affected) side, and better balance. 4) I still have tremor, but I feel in a way like I'm "getting my life back." Thiamine injections are the best alternative therapy I've tried so far. Seems like it could be a game changer. I will continue for at least the initial recommended three month period, but I honestly cannot see any reason to quit taking it. If there is a down side, somebody please let me know.
Fantastic! I have been taking high dose thiamine (settled at 1.5 grams per day) since May, 2018, when I was diagnosed. I am better now than I was at diagnosis. I am not aware of any down side. It still seems too good to be true, but I have saved Dr. Costantini's first email to me. His last line was "You will be fine forever. " I dare say I'm starting to believe him. 😊
Hi everyone, here is an overview of my husbands HDT journey. He is at day 86 of HDT at present taking 2g/day. He is 47 and has had symptoms since 2011 but diagnosed 2014. Prescribed pramipexole, got up to 1g 3x day with 0.25g extra 'if needed'.
Week 1: improved sleep - at the same time halved pramipexole to 0.5mg 3x day (not happy with this med after researching)
Week 2: daily bowel habit returns, doesnt 'feel the cold' as before. Facial expression better.
Week 3: does lots of travelling for work, projects, airports, meetings etc,, seemed to handle these stressors better. Pramipexole now 0.25mg 3x/day
Week 4: arm swing improved, tremor reduced am & pm (left side affected).No pramipexole from end of this week, using fresh fava beans, pods and all, eating 2-3 2x/day , this is until his Mucuna arrives. Had a couple of episodes of restless legs at bedtime, ate more fava beans and was able to sleep. Also started Ashwagandha, immediate effect on mood and anxiety.
Week 5: Started Mucuna (15% Now brand,), takes one of these with his B1 am&pm. Had best sleeps ever, feels very good, mood, anxiety etc improved. Travelling again for work, handled it very well.
Week 6: still feeling very good, xmas a week away.
Week7: Started taking supplements (had blood tests, organic acid tests, urinalysis - sent to usa for testing - came back low glutathione,vit b's,vit c, high lead & mercury - he is a project manager remediating toxic land and ex mine sites,,hmmm). Anyway so I started him on lipo-glutathione,nac,methyl b's, 5htp, l tyrosine, probiotics). Still felt well.
Week 8- till now - due to being away for xmas, food, family visiting, travelling etc just carried on as above, however started to notice loss of arm swing again, tremor return, bowel habit pre HDT, and this time the right side also with slight tremor and loss of swing - felt taking too many pills so stopped all the other supplements except B1, Mucuna and Ashwaganda. Have emailed Dr C our concerns over returning symptoms and the new symptoms, understandably he needs time to recover and he is in our thoughts, what a wonderful man. So we have stopped the HDT, and will have a break for a week and return at half the dosage and monitor things from there.
Have ordered Nutrivita Mucuna and also Barlowes 40% - so when they arrive will try the Nutrivita - have micro measuring spoons so will start with smallest dose then work up. I think the 15% does nothing, or is it the fact that we stopped the pramipexole, even if it was doing anything he is not going on that again, or it could be the B1 dose needs reducing which we will see how he goes on 1g daily instead - or it could be a combination of all of these. We eat a low carb high fat diet, started out the keto diet last May but have 'softened' it a bit once we learned more about it, we have been gluten free since before xmas, two of his immuno markers in the testing mentioned above suggested gluten intolerance. He takes a magnesuim with 5htp and some herbs before bed , if he forgets it he sleep talks and jerks about- when he takes it bliss for both of us.
This is a great website, so informative and supportive of everyone and of course this is where I found out about HDT.
P.S - he has also been suffering from hip and shoulder pain since before xmas, cannot attribute to any activity or injury, have just been reading possible link to HDT? Has been to physiotherapist etc, taking slow release ibuprofen, will see if week off HDT helps or when we restart at reduced dose.
Not a cure, just a treatment. All my symptoms have disappeared except slow gait which has improved and fatigue. I can smell again, my arm swing is back, I can rollover in bed, constipation gone, incontinence gone, no UTI’s, no toe cramps, no brain fog and a few other symptoms gone or improved. It has to be b1 Thiamine hcl. The HCL is very important. Other b1 Thiamines don’t work. I hope this helps. Roy’s Facebook page is dedicated to the thiamine hcl. It is very helpful. Read as many prior posts as is possible. That is where I learned everything I know about Dr. Constantini’s b1 protocol. Just about any questions you have are already answered there. If you can’t find an answer just ask the group. There are always folks willing to answer and give helpful advice. I highly recommended this lifelong treatment. Good luck and I hope you try it. All the dosing information is on the group in posts. This is why it’s important to read as many posts as you can.
Started her HDT programme Nov 18 after having a real dip with loss of appetite, lethergy , brain fog was taking Sinemet 100/25 x3 daily ( after meals due to feeling nauseated taking pre meals ) D supplement. Since diagnosis Jan 18. Headspace daily. Personal trainer x1weekly. Walks daily.
Dr C recommended 1 gram HDT daily reduced Sinemet 1/2 tablet x3 daily. Brain fog improved, lethergy. However, felt tremor slightly worse. Reported this to Dr C after two weeks, as he requested, and told continue send videos pre treatment and post treatment at 3months.
3 months review. Pre HDT and 3 month Videos sent. Rx regime HDT 500mg daily 1/2 Sinemet (100/25) x3 daily , Vit D supplement. With report of improved lethergy, also no brain fog, appetite better. Husband and friends report her looking and appearing better in herself. Negatives for her- feels tremor slightly worse and feeling shaky inside at times- worse when cold, stressed and thinking about it. Continuing Yoga, tapping. Personal trainer sessions x2 weekly. Walks most days. Headspace mindfulness daily. Added in hypnotherapy sessions.
Dr C response Watching the videos, doesn't even look Parkinsonian. She'll be fine forever. Try to reduce the dose of 250 mg to and keep me informed.
So not sure what dosage he meant and no break mentioned and Dr C now unfortunately not able to give support. However, Easilly very supportive and helpful- thank you. So we have tried 250mg daily - lethergy and motivation not good at all within a few days, so increased to 500mg daily slight improvement but still not too good as she was so currently trialling 750mg (500mg AM, 250mg lunchtime) Sinemet and additional therapies activities as before.
The following is a direct cut and paste of a post by Stevenmast on Feb./08/2019:
HDT 1st 25 days
Stevenmast
Stevenmast•
2 hours ago•1 Reply
Hi everyone! I was asked to post my HDT experience via this link so if you heard this before my apologies it wouldn't be the first time I repeated myself. LOL
My first 2 weeks doctor C recommended 1 gram in the morning and see how I do. I felt good enough after two weeks to double my dose to 2 grams, 1 in the morning and the other around 1:30 Pm. I'm taking it orally 500 milligram tablets. Here are some of the excellent results i have noticed:
1. The up and down brain fog I would often get using mucuna usually beginning around the 3rd hour has gone away. I was beginning to dread taking the mucuna now everything's much better. More up time!
2. My energy level and overall drive and passion have come back.
3. Mike core is better allowing me to move in bed easier.
4. I feel more calm
5. The shaking and uneasy feeling I had in my jaw has subsided not 100% but perhaps 75%.
6. Constipation has gone away
7. The hand and finger movement that seems common amongst pwps has gone away.
8. Facial expressions seem a little more normal.
The only negative experience I've had and it seems to be getting better is I feel a little more amped up at bedtime. Last couple of nights have been better. I've had Parkinson's for roughly 11 years. The last couple of years I've been on mucuna only usually three doses a day 4 hour intervals 1.1 grams per dose (3/8 teaspoon)
Hi everyone! I increased my daily oral dose of B1 to 3 grams. All improvements still hold true with the addition of less stiffness in my wrists and ankles. So far so good!
Hi everyone! Yesterday New York temperature was in the 50s so I took a chance strapped on a helmet and got up on a unicycle. My balance was better than 2 years ago around the last time I tried getting up on a unicycle. I'm just feeling good all around stiffness has subsided facial expression more normal overall energy throughout the day which I did not have prior to taking B1. That being said since I can't reach doctor C at this time I'm seeking advice. Doctor C started me out on 1000 milligrams and talked about increasing or decreasing after two weeks. I'm now taking 3000 mg for about a week or so but not sure if i should increase in another week to 4000 or wait longer perhaps 30 days? Thanks Steven
What many people have found is that within two weeks of starting HDT, they sometimes find that their symptoms start to worsen after an initial improvement from starting on HDT, which is an indication that the dose is too high. You are seeing a cumulative improvement of multiple symptoms at your current dose and no worsening of symptoms at all. This is exactly what Dr. Costantini has said many times, the correct dose should only show you symptom improvements! If it continues like this over the next week with no worsening of symptoms, then you can consider increasing your dose, but it makes sense to continue at the current dose for at least another week, because based on what you have described, it sounds like you are very close to optimal. In your case, there does not seem to be a reason to rush into changing doses just yet.
When I reached 4000 mg I didn't feel great little sluggish just not feeling good in retrospect most likely not taking in enough calories trying to lose weight . I shut down for rough 4 days started back up at 3000. My intention is to maintain 3000 until I lose the additional weight 8 pounds. At that time I will increase buy 100 mg each dose so 200 per day in the never ending quest to reach optimal dose! All symptoms described above in previous posts have remained better with increased benefit 75% to 90% on jaw shaking and overall discomfort especially at night. With the exception of dreaded constipation its back! - Steven
I believe 3 grams (3000 mg) per day is still more than most of us are taking. Dr. Costantini started me at 3 grams last May, but had me reduce to 1.5 by August. Just FYI.
Well it is not said, here is a simple research on the oral thiamine taken that shows the levels of concentration in the blood over time. If a person wanted to keep it very high a dose for a starting period,1500 mg every 12 hours that would make 3000 mg a day is ideal, but as you see from the tables above the averages there are discrepancies from person to person. Then everyone draws their own conclusions, I go to 100 mg I.M. twice a week and I'm fine with it, but it takes the recipe.
I apologize in advance for writing so much but i needed to give you the facts and perhaps someone can help me better understand! Over the last couple of weeks I have been having bouts of dizziness that last for roughly 30 to 60 minute at least one time everyday or every other day. As well as, nausea after taking my mucuna more often then not! I have also been experiencing jittery legs while lying down right in the middle of my dose which i never get! Two other serious issues that seem to be worse since starting B1 January 13th are sleeping and constipation. To be fair sleeping has always been an issue and so has constipation but not like it is now! Also, i have an inner ear issue that has been treated with a water pill to bring down the swelling of my inner ear and seemed to have stopped the Vertigo i was experiencing which for those who know you wouldn't wish on your worst enemy every thing spines like a cyclone!!! Not the same type of dizziness im getting now. Since maintaining 3000mg of B1 a day at 1500 per dose i still have all the GOOD i have reported since ive started. Everything! i was experimenting taking an 1/8th off my 3/8th dose successful at times but not perfect. The other thing i was able to do was stretch the dosing time of my last dose almost 8 hours instead of the normal 4 and was feeling pretty good! I welcomed dosing at 8pm instead of 5pm because it got me closer to bedtime and helped me fall a sleep. I have been taking the same 3/8th dose 3x a day for approximately two and a half years and other than a little nauseousness at times its been all good. I decided to go back to what always worked when i first started taking mucuna. I stopped the water pill last week. I stopped taking the green tea with my mucuna just a cup of coffee and i stopped the B1 yesterday! Yesterday I took a mucuna dose at 8:30am and 12:30 but when 4:30 approached i got very dizzy closed my eyes for 3 hours and woke up feeling good but never took another dose until today at 9:30am a stretch of 21 hours! Again today as i write i haven't taken a dose since 9:30am almost 9 hours. Yes im shacking now but my head is clear!!! At 7 hours i got up on my unicycle no problem something i would not have tried off time ever! Could i be suffering from toxicity from l-dopa/dopamine? Could this be happening because the B1 is helping me?
You could try staying off just the B-1 for a full week to see if the negatives improve. If they improve then your dose is likely a bit high and should be adjusted. There have been members that have reported that after being stable for awhile at a specific HDT dose and then a worsening of symptoms appear and Dr. C seems to confirm this possibility. He mentions that as the B-1 acts to repair certain cells, the need for thiamine may decline and a downward dose adjustment may be needed after taking a break from B-1 and of course take detailed notes during the time off from B-1.
Steven, you seem to have responded well and quickly to HDT, so perhaps it has affected some cellular repair that has lessened the need for your current dose???
I have no experience with mucuna so can not comment on that aspect.
I starter taking Thiamine the first of the year. I purchased Thiamin Hydrocloride, 300MG capsules, 100 capsules per bottle, GNC on Amazon for $14.99. At Dr. C's recommendation I started with 2 capsules morning, and another 2 capsules evening for a daily dosage of 1200MG. At the end of my first month I had noticeably better balance especially when in an off period like just waking up. Freezing was almost nonexistent, and my girlfriend said I was smiling more. I also experienced NO adverse side effects. At that point, and with Dr. C taking care of personal matters, I decided to bump it up ever so slightly. I am now taking 3 capsules morning and 3 more evening for a daily dosage of 1800MG. My body continues to gain flexibility, range of motion, and fluidity. My mood has also improved. Things are looking up.
Greetings. I am a 46 y.o. male. I recognized signs of Parkinson's disease 3 years ago (early 2016) and I was officially diagnosed in Nov 2016. I am white, from mixed background: ethnically half Russian and half USA of Northern European descent.
The most striking symptom is akinesia and bradykinesia in my right arm, but I have a gamut of other symptoms.
I began 2 grams a day of Thiamine HCL on 24 Jan 2019. Prior to my first dose, I made videos of me walking, writing (micrographia) and talking.
It has now been 4 weeks.
I have not noticed obvious improvements. It is possible that my symptoms have worsened slightly, but it is very hard for me to know whether this is due to the B1 or because I'm noticing the effects of a longer-term decline (on the order of several months).
In the past few days, I have been confused about whether to try a higher dose next, or a lower dose.
Today, I decided that I will give 3 grams a day a try. Wish me luck.
Generally, Dr. C will ask you to stop for about a week before switching to a new dose because he wants to see if you improve during the week without thiamine or if you worsen. How you respond to no B-1 gives him a clue as to whether your dosage adjustment will be up or down.
If during the week off, your symptoms improve for a short time, he will likely adjust the dosage downward, but if your symptoms worsen shortly after stopping HDT, he often times will adjust the dosage upward. This is the reason for the break, to have a clue which way to go on the dosing.
A couple of points to consider is that some people have taken three months or more to see their first symptom improvement while others have noticed an improvement the first day of HDT. Unfortunately, the ones who have seen improvement in very slow and small steps for months don't always notice them. This is the reason why Dr. Costantini requires the initial videos, because people who get these slow and small improvements do not seem to notice them until someone who hasn't seen them in awhile says something like, you seem to be walking much better than the last time I saw you or your voice sounds much clearer and stronger than last time. It doesn't seem like you can forget how bad you were, but I have seen this happen enough to know it is definitely a thing! The videos tend to eliminate this issue because they are a correct record of how you used to be . I recommend that in addition to the very short videos that Dr. C requires, you make your own longer videos that show you doing a lot of different things such as walking in a figure eight, going up and down stairs, getting up from a seated position several times, walking longer distances, talking at length, eating and swallowing etc. Dr C is very adept at analyzing these videos whereas we are not as practiced as he is. These longer videos that we make and save for ourselves will be easier for the patient to interpret because they simply show more activity and tend to expose are deficits better.
Lastly, not everyone responds to HDT and at some point, that fact has to be considered as a possibility.
I had a funny experience today. One of my Qigong instructors told me he thought I looked like I was doing better. I said, "Really?! Over what time period?" He said, "Oh, I don't know, over the past month." I've been on B1 for the past month.
Subjectively, on the whole, from my perspective, I feel worse, not better. It feels harder and harder to lift my arms up. The akinesia in my right arm feels significantly worse than it did three months ago. My energetics and sleep are clearly worse over the medium term (3 months). But part of me does paradoxically feel better, too. That may be down to B1 or craniosacral therapy, shiatsu, or ???.
Anyway, I do value this outside perspective. I mention out because it has been repeatedly stated that for some people, the improvements are noticed first by people who observe us, rather than by ourselves.
Around 22 or 23 Feb, I tried increasing my dosage to 3 grams for two days. As I said in my last post, I wasn't sure whether I should be going up or down.
One negative symptom that I had was a sore bump or ulcer at the back of my mouth where my tonsils used to be. I sometimes get mouth sores when my system is stressed. I think it is a latent virus acting up. It used to happen when I smoked cigarettes or took a higher dose of ADHD stimulant medication. To me, this was a good sign that my system MIGHT have been stressed by the levels of thiamine I was. I don't know for sure, but that was my intuition.
So around 24 Feb, I started taking a break from High Dose Thiamine. My plan is to stop for around 7 days, and then try a lower dose. I may try one gram a day.
Again, it's hard to be sure, but I feel that my symptoms MAY have improved slightly after coming off the 2 to 3 gram dose of thymine that I was taking. Maybe I should have taken comparison videos. Oh well.
Hi Elliot, I've been on B1 since 3/18, and for me the right dose fluctuates. I know when to adjust dose by how well my balance is, when I start leaning/stepping backwards not to fall. I usually half the dose for a few days, see how I feel...if worse I go up 500mg,, then in another few days up another 500mg. Recently I went from 1k, to 1.5 k to 2k a day, and doing ok. I skip once weekly, and skip half the dose once weekly, if I skip longer, I fall apart.
It’s been a while since i posted an update and reading back i am happy to say that not much has changed! I am feeling good. I have continued 20mg B1 IM once weekly and have added a daily oral dose of 100mg B1hcl about 2.5 months ago which i hold on the weekends. This regimine is good so far without jitters, anxiety, or general worsening of symptoms. I also take 1000mg of B12 daily, mannitol 2tsp, coq10 1200mg, and a complex of mag, zinc,, calcium Vit D at night. My rx meds are 25/100 LD 2-3s per day, 10mg propranolol, and possibly 1mg resagaline (in a trial). exercise 3-4 x week that includes yoga, cardio, and strength building. deficits remain on the right with intermittent micrographia and reduced arm swing. Increased regularity with improved smell. Appointment in Gainesville next week. Looking forward to what the Dr’s have to say!
LML,
Congratulations on your continued success! Very good to hear that.
On the B-12, did you mean 1,000 mg or 1,000 mcg? I thought the super doses of B-12 were mainly used for MS? On your next doctor visit, please don't forget to mention Dr. Costantini's protocol to your doctor!
Art
This is a cut and paste of a post by dreilly942 on 3/12/2019 describing how they are using HDT by itself to manage the majority of their PD symptoms after being relatively newly diagnosed.
I absolutely agree, I was diagnosed 6 months ago, no meds just B1 and it significantly improved all of my symptoms.
I was diagnosed last Sept at 48, didn’t want to start meds so researched and found so many PWP benefiting from B1, I started taking it in November, 90% of my symptoms are gone. I had finger tremors, stiffness in my knee/neck, constipation, balance issues, waves of fatigue and loss of mobility in my left hand/foot. I take 1gm/day on my own.
I was diagnosed last year (feb) I'm 36 now, I was classed as tremor dominant but had the worst frozen left shoulder and arm, my left hand wrist would freeze and my gait went to hell in a handbasket, with motor issues occurring in my left hand, I'd fall over from bad balance issues and I could walk down a hallway but it would be like a pinball bouncing off the walls. I lost so much strength I couldn't hold my newborn and 1 year old for longer than 30 seconds at a time.
Dr put me on Madopar 1.5 pills 3 x a day, I exercise rigourously reduced my heavy metals intake where i could, cleaned up my diet, reduced stress and now started b1 supplementation, I'm a different person now 90% of my symptoms have stabilized and im on less l-dopa than when i first started,but I might need to be classed as super Parkinson's as I had everything and no one thing greater than the other
This is a copy and paste of a post by AlpacaGal posted on 3/28/2019 where she is discussing her preliminary results with HDT in her first nine weeks of testing.
I've been on HDT for nine weeks now. Started at 500mg daily, added 500mg more each week until I reached 2.5 grams. Feeling great, absolute improvement on so many levels including minimal foot drag now and no cane! I did suffer from leg and foot cramps more with HDT but added one 1000 mg magnesium malate with each dose of B1 (so twice a day) and cramping has resolved. No longer sleeping half the day away. So incredibly grateful for the information that has changed everything.
This is a copy and paste of a post by forum member Reginald1 on 3/30/2019.
I have been taking 1gram a day for about 2 months and have noticed a big change in my moods, I am not feeling anxious or depressed since taking it. I have virtuously no tremors so this is all I have to go by..
Although this thread has slowed considerably as the posts have continued to mount, it is now very slow to load at almost 800 replies now. There is another HU thread where people have continued to post their results using HDT / B-1 with very good success. There are new posters with new results that continue to show the majority of posters finding impressive results using HDT / B-1 at a wide range of dosing from under 100 mg per day up to 4,000 mg per day.
Here is a link to that post about HDT / B-1 that already has 60 replies :
It’s been a while since I last posted anything, and I might as well fill you all in, now that we’re supposed to isolate and life has slowed down even further. Since I last wrote a lot has happened with me, and thank God, it’s mostly been encouraging.
I’ll start with the Lyme Disease- I mentioned that in one of my last posts. There are only two LLMD’s (Lyme Literate Medical Doctors) in all of Canada, one in Calgary, Alberta, and one in Toronto, Ontario. After a blood test with iGenix lab in California came back positive for Lyme, the Dr in Calgary put me on a 3 month round of Minocycline, gave it a break for several months and sent another blood sample to Armin labs in Germany. We had a heck of a time getting a viable blood sample from our remote northern area to Germany, but after 3 tries we finally accomplished it by driving to Edmonton (650 kms) and getting the blood draw shortly before the courier left for the airport. The outcome of the sample showed up (in their words) “within threshold.” So it looks good on that front.
We also had a specialist over to remedy the spot in our master bedroom walk-in closet where we found black mold resulting from a leaking vent pipe in our attic that was dripping condensation on the closet ceiling. I don’t know if that helped, but we wanted to fix anything that could be causing health problems.
A year ago I went to our MD and asked for a prescription of Sinemet. He can only give a prescription of up to 300mg per day, and I didn’t notice any improvement. Our nearest movement disorder specialist is in Edmonton, so we booked an appointment for July, and after he put me through about 45 minutes of questions and movement tests, he sat us down and gave me the prognosis. His words, “You don’t only have typical Parkinson’s Disease, you have what I call ‘classic Parkinson’s Disease.’ “ He was happy that it has been progressing slowly, (symptoms started 11 years ago) and he said the 300 mg of Sinemet was not enough to make any difference. He had me gradually increase the dose to 200mg , 4x daily. I saw him again in October, and he was really pleased with my improvement, and that I have no side effects from the meds, except strangely, if I take the meds on an empty stomach, I start yawning like crazy in about half an hour for about 30-40 minutes. A few of you responded with similar reports when I posted the question about this a while ago. My next appointment is coming soon in May.
Many of our friends have noticed a lot of improvement. The changes have been slow and subtle, nothing dramatic. And oh! I almost forgot to mention I’m at 2000mg of Vitamin B1 and still experimenting with the dosage on that.
And now for a little boasting! I had started to lose a lot of my normal self confidence, and it especially showed up in driving and public speaking. I was getting my wife to drive more, especially in larger cities I’m not familiar with. I used to enjoy the challenge of navigating with a map and in recent years with GPS, but had all but stopped driving. I would do the navigation for her, and although she is a good driver, it was a disappointing development. Last fall we took a 10 day trip to eastern Canada, and to my surprise I found myself doing all the driving, and doing it comfortably! Then beginning of March we took a road trip making stops with friends and family all the way to a wedding in Pennsylvania, then on to Virginia, and Oklahoma. We travelled a total of 10,300 kms, and I’m ever so happy to tell you I drove every inch of it and as in old times I did my own navigation too. We had to cut our trip short by 3 days because of Covid-19, and drove over 16 hours the day we crossed the USA-Canada border. And I felt great!
I didn’t mean to write a book here! Sorry. But I hope my experience will encourage others to keep trying to find good health and not give up. I’m by no means healed or cured, but I’m a lot better than I was even 5 years ago.
732 replies: I think when Art left the forum a good resource was lost. Does anybody other than me have High Blood Pressure & Mania problems on a B1 "or" was it due to my choice of B1? I have little question that B1 works, just have find right dose for me.
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. You are right: for now I should try writing to him as many other people in this community have done - the Doctor sounds very helpful. 
OK I lied, he has a little bradykinesia although it has improved with the B1 therapy. 
How to Get a PDF List of All Your Posts (with links to the posts)!
Here is what Dr. Costantini Prescribed based on my weight / height / meds... if anyone finds this helpful
Question about Thiamine
DR. COSTANTINI & DR. COLANGELI ANSWER 58 FREQUENTLY ASKED QUESTIONS (FAQs) ABOUT HDT / THIAMINE / B1 PROTOCOL / Email : carapetata@libero.it
