I read with hope and encouragement the posts on this site of PWP who have found, what is for them an optimum dose of HDT. Trying to hit on this even with Dr. Costantini's know how and sincere advice is proving problematic for my Dear friend who has been on the Protocol for about 3 months now.
She started on 2 grams per day and because after initial improvement there was a decline to worsening of symptoms she reduced the dose down to 250mg per day on Dr. C's advice.
She is now taking 500mg per day on Dr. C's advice and things are pretty much the same as when she has been on all the different doses she has tried which is some improvement followed by much better improvement followed by a return to her symptoms or a worsening of them. Is anyone sharing the same journey? and if so could give some advice, it would really help Thanks
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Seashore60
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"she has been on all the different doses she has tried which is some improvement followed by much better improvement" _ making too frequent changes without letting the dose settle.
You may well be right Roy, however we have only followed Dr. C's advice on lowering the dose when he has suggested because of the eventual worsening of symptoms at every incremental dose
which I understand is an indicator of too much Thiamine?
I remember you and your friend. It may come down to dosing every other day or every third day or even going hi /lo where it is something like a 200 mg dose one day followed by a 300 mg dose the next , but it will be best to continue working with Dr. C to help you find that dose. It sounds like she is very close and she already knows the potential benefit because it has worked very well for a short duration already on multiple occasions. I know it is frustrating, but it will be worth it once you guys zero in on the correct dose. You guys may end up holding the record for lowest dose required! If it weren't so bitter, I would suggest mixing the dose in water and sipping the dose throughout the first half of the day to slow down the delivery of the B-1, sort of like a delayed release tablet might do.
Another possiblity might be that she stops her dose for a day or two every time she gets to her best response and then resume the dose after a day or two. These are things that you can discuss with Dr. C as potential options to try. You knew going in that it was going to take a relatively low dose because her response was so fast and her overdose symptoms came relatively fast also. You guys sound like you are so close to finding the ideal dose! Please keep us updated!
You've given a interesting variation on the "usual" doseage and I can see the potential in it, and you're right it appears tantalisingly close and yet so far, will Email Dr. C with an update and will keep on trying as the benefits we've seen however short, have been beautiful.
seashore60 --- like your friend, i have lowered my thiamine dose numerous times. i am currently taking 300mg daily, which seems pretty low, but i think i am sensitive to it, or maybe its that i dont excrete the excess as well as some other people. and it just builds up over time. then i take about 5 - 7 days off, and then resume at a lower dose. i have been on the 300mg for about 3 weeks, and so far, so good.
seashore60 - yes, i still have the improvements when i take the days off from taking the thiamine. but then after a few days the symptoms start returning. they get better after i start the thiamine again, at a lower dose.
Another option you can discuss with Dr. C is a lower dose of HDT in conjunction with a magnesium multi supplement as they work well together and magnesium may have a slight potentiating effect on the B-1.
I am on Dr. Constantini B1 regime, and I understood that you should make sure your B1 capsules do not contain any magnesium. I have been in the 2000 mg regime for three months with fantastic effects.
To clarify on what initially appears to be a discrepancy between what I said and what Dr. Costantini has said, magnesium is synergistic with B-1 and on this we agree, and that is why I mentioned that potential option to run by Dr. Costantini.
Dr. Costantini has suggested not using the B-1 tablets that contain magnesium for a specific reason. The B-1 pills that contain magnesium, generally have 100 mg of magnesium in each 500 mg pill. If it turns out that your optimum dose is 2 grams per day to 4 grams per day, this equates to 4 to 8 pills per day or 400 to 800 mg magnesium per day. The RA for magnesium is approximately 400 mg. When you account for magnesium from food sources and other supplements and the additional intake from the B-1 pills, you are well over the RA and in an area where you could potentially end up with hypermagnesia! This is the reason that Dr. Costantini does not want his patients to use the B-1 pills with magnesium in them. There is nothing wrong with magnesium in relation to HDT and in fact they are usually synergistic, but there is a definite problem with taking in too much magnesium which can create other health issues!
If you look at Erniediaz and his experiment with B-1 pills containing magnesium, he got the synergistic effect with his initial dosing, but that was just for a short term test because he was going to use them on a trip he was taking. You just can't take that much magnesium everyday or you will eventually have health issues from it.
Actually, Dr. Costantini and I are in complete agreement on the use of B-1 pills which contain magnesium, don't use them, but a separate magnesium multi is fine as long as you keep it at a safe dose.
From what I have seen, everyone who has mentioned it on this forum is using a different type or form of magnesium, but the one who has been fairly vocal about the good effects they have gotten by adding magnesium to their HDT protocol is Kia. Kia is using two different brands, one recommended by Dr. Costantini and another one that he found on his own and feels is quite effective. This second one that he finds effective contains Magtein, magnesium taurate and the third form, if I remember correctly is magnesium glycinate. Kia is definitely the person you want to talk to if you want to know more on that subject.
Myself, I am using three forms of magnesium. I use Magtein, magnesium taurate and magnesium chloride in the form of mag oil spray for topical application. I use the mag oil because it can stop muscle cramps, relieve pain, reduce inflammation and relax muscles and it can works in just minutes.
I just looked at the Thiamine HCL from Vitacost that I'm taking. Although it's not listed under "Supplement Facts', under "Other Ingredients" it lists "vegetable magnesium stearate". Does this count?
Yes, but it's been an interesting experience. My dose is 1.5 grams / day; 2 x 500 mg before breakfast, 1 x 500 mg in afternoon. I initially thought I was fine at 2 grams, but after about 3 weeks I was feeling worse, so Dr C had me cut way back, then we worked our way back to 1.5 grams.
I've tried getting back up to a higher dose because I still don't feel quite as good as I had felt in the beginning. But every time I tried, I hit that same wall of jitters (I hate that) and had to cut back. So I'm staying at 1.5 grams.
My gait is still usually very good. Much, much better than it was. I'm still fast-walking 3 miles a day (most days). But not just that - I can spin as I walk, I can stop and walk backward, skip (remember skipping?) and even do some disco dance moves when nobody's watching! If I'm feeling good, my gait isn't the result of concentrating or some other trick, it just happens. Of course, music with a fast beat helps a lot.
At my best, I can sprint across a field like a kid (I'm 62). It's really fantastic. But then I hit a problem (sleepless night, a cold, stress, etc.) and it's all gone again. It comes and goes, but I think lately it's more coming than going.
I'm also seeing a mostly sustained improvement in manual dexterity. My typing has improved a lot. But, again, when I get tired or stressed, it goes away. By bedtime, I'm usually back to struggling to brush my teeth.
Personally, I think the B1 has helped me have enough extra energy to go for my walks, and the walks help with other improvements. So it's been synergistic. Oh, and I have to put a plug in for my diet; Whole Food Plant Based works for me!
No there isn't any magnesium in the B1 HCL that she takes.
Regarding your protocol that's great news! I wish you continued success. Did you start on 2000mg and remain on that dose or have you with Dr. C altered the dose along the way?
Don't give up, I started HDT 3/18 at 4 gm, tweaked to 1 gm, now 1.5 gms. I think things started to improve when I added B 12 daily, reduced the days when I took other supplements, and skip B1 one day a week.
Hi kerrington so pleased to hear that B1 supplementation is beginning to have a positive effect also it seems since you have been taking B12. I'm interested to know what's dosage B12 you're taking.
Hi, I just found it...go to my name under members, click, & you'll see my posts, etc. Click Replies. Look for the 9th one down. It's below the mucuna post a bit.
my modest opinion is that there could be another food shortage especially related to the minerals for which it is reasonable a good nutrition with vegetables including fresh fruit , it seems idiotic but if the B1 enters in all the energy processes is well that does not meet food shortages. A good nutritionist , also on HU , could advise you. (I am not).A link to simplify below.I take this principle, for example, which does not apply to man, but which serves to make the idea that remain only a personal opinion of mine.
Hi,not good news from me sorry to say! I have been trying to get the magical dosage right since March but yet haven’t found it!! I’m getting advice and dosage from Dr C and have reached 5grms per day without any significant improvement to any of my symptoms. I am only 5ft1inch And weigh 9st 8 lbs. I am having increased short blackouts for which I am now awaiting an MRI Scan to confirm my Parkinson’s diagnosis (which I must say was supposed to have been confirmed with a scan over 3 years ago). Although I have no symptoms apart from constant nausea, the stomach X-ray I had yesterday showed that my bowel was completely blocked and the PD doctor I saw wonders if this is why my medication is not working??
I’ve had similar problems for the last 6 or more months. Started on a higher dose than had to keep reducing it due to the rollercoaster of improving and worsening. I do take oral tablets and have dyskinesia, the higher the dose eventually my symptoms would worsen after initial improvement but the worsening included dyskinesia becoming worse. I’ve been in contact with Dr. C and asked what is the lowest dose you’ve seen success with? He replied 300mg a day. He has also said that those of Anglo Saxon origin seem to need less than those in Italy and probably most of Europe. I then thought the dose here in the US might then also be successful at a dose even lower than 300mg. Anyway through it all the dose I’ve finally settled on is 200mg., I feel it is still helpful though probably not as much as those who can tolerate more. Still considering injections which some find more success with than the oral. You’re definitely not the only one.😊
Thanks for your info, I like your description "Rollercoaster" It certainly can be! I suppose if after trying many different doses IM injections could be a way forward? It's good to know we're not the only ones struggling to find the right dose but wish it wasn't the case!
Thanks, You make a good point regarding nutrition in total. Although we may think our diets are sound and we take in all the vitamins minerals Etc. most of us probably need some sort of supplementation
I encourage everyone to eat at least one big serving of leafy greens daily. They have very high nutrient density, micronutrients, fiber, etc. Things that most people don't get enough of.
I am not a nutritionist, but take for example the calcium which is a mineral, but is not assimilated without vitamin D3 ... ect etc. How do you take calcium? It is an important mineral. I knew a lady, mother of my friend very crazy, who lived on the Alpe in the summer and lived producing a cheese for tourists called Casera, very good, she had six very beautiful dairy cows that milked hand every day. Then it made very good butter and cheese due to the feeding of fresh alp grass. The point is that at age 70 he had never been to the dentist and his teeth were all healthy. You can imagine what his diet consisted of: milk cheese from his cows, vegetables from his vegetable garden and little pork. This is Ca +, the calcium. I want to say that each mineral has its symptoms of deficiency that an expert nutritionist easily recognizes, but also me about myself sometimes.Gio
Wow, such a relief to know I’m not the only one. I’ve been working on my optimal dose since June. Same exact situation, quick improvement followed by worsening symptoms later. Now I’m on 1000mg, 5x p week, 500mg 2x p week, I’ll report next week. My symptoms are very mild.
Hello Seashore60, I have had the same results. Started taking 2 gr daily with some worsening of symptoms. Went down to 1 gr, showing some improvement then a decline. So we cut down the dose to 500 mg. daily. I'm on that dose at the moment, taking it 6 days and resting 1 day. So far it works mostly during the day hours; at night my stiffness, spasms and freezing come back. Oh, and I'm sleeping a touch better. I have been on 500 mg only one week so I have to try it for longer and see how it goes. Patience and faith, dear Seashore60. If this is what could work for us, Dr. Costantini will get us there. Have a great day.
I am in a similar situation now after 10 years as a PWP age 70.
I have been on HDT for 13 weeks and had to stop taking the 2 grams I was on since the start on 20/8/2018. I stopped 7 days ago when my symptoms suddenly worsened...... tremor and shuffling gait. I was taking the 2 grams altogether at 0600-0630 in 250ml of water which I usually downed in one go. This was followed by my main dose of medication at 0700 (stalevo (carbidopa, levadopa entacapone), azilect, amantadine, kemadrin)).
DR.C added a vitamin B complex dose some weeks ago without any noticeable change. When he added 500mg to be taken later before lunch, I had an almost immediate worsening of my symptoms the following day. I now stopped HDT and sent videos of my PULL TEST, Facial interview, walking movement to him. The pull test was good, Facial expression showed no sign of PD and walk was ok though I was a little bent to one side due to curling toes on right foot.
He then asked me to tell him about any notable changes every 2-3 days. There were no major changes apart from getting a longer time ON ( 3-4 hours) before returning to the 2-3 hours as usual.
DR. C then asked me to continue to go without HDT and report back in 5 days. He hinted that he was inclined to reduce my dose to 1.5grams but awaits the results of my days without HDT.
My main symptoms now are Curling Toes with restless feet on both legs and sometimes restless legs. A mild Dyskinesia sometimes and Hand Tremor when going OFF after 2.5 hours. I get breathless when going OFF which is apparently normal for PWPs. The hand tremor is a feature at going OFF time too. The Constipation is mostly resolved without HDT but have added Dulcolax laxative. My shuffling unsteady walk takes me by surprise sometimes when I appeared to have it resolved with help from the Alexander Technique which gets you to THINK about walking before you start and the position of the head in relation to the body.
It is important to say that I am in better shape with DR. Costantini’s HDT protocol and am most grateful for his care and attention. I feel better overall and have very little tremor or dyskinesia. I do now walk mostly with one walking pole though use both (Nordic walking poles) when walking out for exercise.
I will get back to DR. Costantini on 11/December/2018.
Your description of how you've been getting on with HDT seems to follow what many here have experienced, let's hope you're getting closer to your right dose
It seems many of us are sharing the journey to optimal B1. A frustrating journey to say the least. But I am glade we have our cheerleaders to keep us on track and Dr. C as a guide. Even with the ups and downs I know the eventual success will find me (us)! The good is so good and I know it is within reach. Most recent switch was to bulk HDT. I am a force to reckon with my handy food scale, notebook and minuscule measuring scoops. A pinch of this, a dash of that 😂 maybe a little eye of newt is needed? 🦎
So far so good! But I have to admit I miss my shots and am thinking that maybe 10mg every 5 days would do the trick 😀 Not saying the bulk is bad though, just not the same. I’ll stick to it for a few weeks and see what happens. Trying to take regular notes and I’ve become pretty astute to the feeling I get when I have too much on board. I’m thinking at this point it’s going to be trial and error till the perfect dose is found.
It will be so worth it all when we find that magical dose!!!😊 when you say you miss the shots is it because it improves your symptoms more than bulk powder? Thanks!
The shots work fast! In about 20 minutes I feel my whole body relax, and any hip or arm pain vanishes and lasts about 5 days..... the wear off is slow and not back to baseline, but ready for next shot by day 7: lol, the life of a B1 junkie. Which (BTW) helps me to see the benefits of the daily dose..... no wear off as the dose remains constant. But split in half every 5 days also sounds appealing 😉
Thank you, sounds very similar to what my friend experiences. We haven't emailed Dr. C yet regarding the current dose of 500mg per day as we wanted to give it a little bit longer to try and gauge it better, although it's beginning to follow the previous patterns of either a return to symptoms or a worsening of them as described by Crystal04
Will have to read more about the fat soluble type of B1 as far as we know Dr. C only recommends water soluble B1.
This Maze needs some navigating, reminds me sometimes of Danny and Wendy in the Shining!
Yes, he recommends thiamine hci or hcl. He mentioned previously that another issue was that there are previous studies showing that a fat soluble form did not get to exactly the same place as the thiamine version, but for oral use, he only recommends the thiamine hci.
Stephen King, wow, that was 38 years ago! A classic!
That clears that up and good advise for people thinking of starting with HDT and being confused whether water or fat soluble is correct for an oral dose.
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