B1 - Help or Hoax?
To help clarify the issue, let’s take a little quiz.
Reply “YES” if B1 has helped you.
Reply “No” if you tried B1 but is has not helped.
Should be interesting.
I vote NO.
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Join my facebook group:
"parkinson's thiamine hcl"
facebook.com/groups/2322600... ; …
Parkinson's Relief, Questions and Answers
I just (may 1st) upped B1 from 1 gm to 1-1/2 gm twice a day 8 am & 4 pm. powder. I dissolve the powder in 1/2 glass tomtate juice, good taste. Will wait till june 1 st to increase to 2 gms twice a day and give it a trial of one month before making a decision. Permission to consult you
Consult alright! likely I will transfer you to the Guide on my Facebook group.
Since you are saying no, what kind of a trial did you give it? How much did you take it and for how long?
AND, Dave, what stage of disease were you in (if you tried it yourself), what form did you take it in (the only appropriate one is HCL)? What exactly were the details in the history of your trial (e.g., what form, how much each dose, what times each day (includes then how often each day), for how many days, then if you changed something, what did you change [how much dose, how many times each day, what times of day, for how many days])?
Then, for those responding to the question, what stage of disease were you in, what medications and substances were you taking, and then, must say the same I asked of Dave: how much, how many times per day, how many days, and when you changed it, how much dose then, how many times (per day), what times each day, and how many days?
These are the main basic variables, and there are others as well. Without including them, as an uncontrolled case study based on testimonials, your question of others and their answers is utterly meaningless and really a waste of time, because in the case of any answers of "no," they could not rule out that the "no" was due to these variables rather than not being helpful, thus the "no" can only be a source of MIS-information.
Final variable, among these simple straightforward ones, would be "how" did it help?
Without the above details, then the only answers worth considering would be those that are "yes," but they couldn't easily apply to any other person if it did not work for the other persons.
The most active proponent of B1 use was Art (Easilly) , who is not stading by his previous posts now after changing his name to Safetyfirst
He was only an observer - he did not have Parkinson's. I believe his disappearance was for personal reasons.
Personally B1 has helped me so I am a YES.
Yes. It has helped with some, mostly non-motor symptoms.
Second your opinion, IqbalIqbal. Pretty convenient, don’t you think?
I'm only in my 2-3rd month but if it helps review the importance of the b group of vitamins, my mum in law cured her brothers terminal brain tumor, I mean the Drs were able to print out a early death certificate - almost dead..... but using b17 the guy is still alive 17 years on.
I don't believe just relying on b1 is a option, you must keep your regimen going e.g. diet,exercise and weaning your way off meds
B17 is found in apricot kernels , he was fed a very hard diet of it for 3 months, I believe it's not the best to taste, but he is alive
thank you very interesting. I'm sorry for your relative, I hope it works.
Vitamins and minerals are an unknown land full of surprises for certain diseases. Pity they are not "tested", after all the system is created to how to maintain the monopoly of a few subjects.
Several years ago apricot kernels were used instead of almonds to produce a much cheaper cake covering than almond marzipan. It was withdrawn at least for a while and the reason I was told was because apricot kernels were carcinogenic. How true that is I could not be certain but the sample I was given at the time tasted bitter to me so I would not touch it with a barge pole! Running a sugar craft/ cake making business at the time I only used the best ingredients.
I take apricot kernels to cure cancer! They contain B17 in them. When I was in Mexico at a cancer clinic I was given the B17 as tablets to take 4 times a day. I am still alive. It will be 5 years in November with no conventional therapy so far since i feel I have better quality of live this way.
I hope you continue to stay healthy and happy especially as you have not had to endure medicines and other cancer treatment, well done for helping yourself. It has always been said that for every disease there is a natural cure out there somewhere.
I wish you all the very best.
How much did he take daily and was it only for 3 months?
BEWARE. So-called B 17 is a well known fraud as far as cancer treatment, and is dangerous if ingested. It is a chemical named "amygdalin," and is a variant cyanide precursor. It is also known as "laetrile." It is likely to be released as a toxic cyanide form in the body. It's also called "hydrogen cyanide" and "prussic acid." Chemically it is not far from super-glue. Unfortunately it is also a derivative of phenylalanine, an essential amino acid, so go figure, but chemistry is like that. There is just something very powerful and potentially dangerous about anything with a triple-bonded carbon-nitrogen component. It doesn't do anything for cancer, and is potentially lethal, very toxic stuff. Stay far away and make clear note of anyone who says otherwise.
Hi Marion, you should check out the book World without cancer. Laetrile is certainly not dangerous. I have taken up to 40 kernels a day with no bad effects. I don’t know if it has helped me since I also do other things. I would not rely on b17 alone. Just do some research on it. You might change your mind
YES , after four year of use I still working full time, it change my life with PD.
Four years! Wonderful. Were you one of the first to take it, or do you know when Dr. C first started prescribing it?
In the 2013 I think
Yes! I could keep my full time job.
Yes it seemed to help with mild dyskinesia but it made me feel too anxious and fluttery so when it ran out I stopped taking it. I only took 200mg a day.
Yes. At a minimum I have enough energy to function. Without it? Not so much...
Yes and no...
It gave me more energy, but after many months, maybe 10 or so (not sure how many because I didn’t at first associate the symptom with b1), I began having hip and lower back pain, especially at night. Despite taking dosage down to 100 mg, the pain returned every time I restarted b1. Had to suspend it. May try again after a few months.
I continue to wonder: does hdt or not quite hdt induce more robust pathology in individuals who have naughty cells that benefit from thiamine?
Yes. 200 mg per day helped, 400 mg per day have induced further benefits. I'm just starting 600 mg day.
What do you mean by “not quite hdt “?
Yes. The improvement it remarkable for my husband. We take it for granted now but associates he deals with comment favorably about his improvement. We never want to go back...me especially, I had to dress him and he had someone with him always in case he fell. He now goes into work on his own again. He is free.
What dose is he on?
.75ml B1 hcl IM every 3 to 4 days
I don't think one can call it a hoax. Dr Costantini was engaged in research to ascertain whether B1 deficiency has any part in Parkinson's. Ultimately, I think that, as with Alzheimer's, it will be found that there are multiple possible causes. This was the standpoint of Dr Dale Bredesen, US neurologist, in his research on Alzheimer's. He successfully restored the cognitive function of very many people with Alzheimer's. Dr Costantini clearly found that B1 deficiency is a [not the only] significant point of departure with many PwP.
It’s a yes from me.
YES- though still experimenting, there's a significant improvement in my mental health. I say this with confidence as others have noticed, for example my daughter can tell when she's home from uni whether I'm on/off the correct dose to give this improvement.
I don't wish to say too much as it is a deeply personal matter, but suffice to say last year
I chose to let go of the edge I'd been clinging on to for 3y. Now I post comedy on a humour site for pwp's, write memes etc. Whilst not exclusively due to B1, it is a significant factor.
However, whilst I don't doubt dr C's integrity or illness the manner of Art's sudden departure has left me a bit uneasy. I wonder if Dr C's been threatened with legal, perhaps from other physicians? I don't know but I feel 'all's not well in B1-land' and we need to know what/why/how.
yes, niggs, i agree. im thinking maybe the fda or one of the pharmaceutical giants put pressure on art/easilly???
It’s a yes for me, along with Sinemet 25-100 three times daily. Dr. C’s sudden disappearance is troubling to say the least.
Just to be clear I'm not suggesting anything untoward regarding Dr.C or Art, but Dr C may have stepped on some professional toes, after all, he was effectively treating other doctor's patients. Whilst he has the knowledge and experience to do so, he is retired and presumably un-registered with the Italian medical regulatory body, (I, of course, don't know exactly, and it doesn't trouble me). I was surprised to find Art wasn't a PWP, was/is he a care provider or spouse? If anyone knows? Ok, I'm tippy-toeing around here! I think what's on a lot of peoples minds is now the HDT protocol has spread beyond Italy, and a lot more folk are on it (apparently successfully) have some negative issues come to light?
Im thinking its something bigger than other doctors. The pharmaceutical companies have more at stake if we dont need their drugs. They make more money if we remain sick.
Hi Niggs, IMO things are as simple as they were written: dr C had a very strong stroke following an operation and you can imagine the serious consequences and Art explained his reasons very well. IMHO There is so much real and effective request for help that people who help no longer have a life of their own, this is not right and often happens to many doctors. Too simple? well, that's how you like it or not. take care to yourself is our responsibility, always !.
Gio, we are indeed responsible for our own health, but the decisions we take are determined by the information provided by others. Art's explanation was clear only in the sense that he was concerned his role may, understandably, leave him in a difficult position legally. My query is why such a sudden and dramatic reversal, that is all and is it related to something that may alter our decisions regarding the HDT protocol.
Niggs, when we face the "unknown" true or presumed our first reaction is to "fill the void” with a supposition, but the facts are simple. Art does not have the PD, but this did not mean suffering for another illness, as he himself spoke of it also in another section of HU. For me it is perfectly logical what he did and he had the right to: to lead his life as he wants and not as others would like, and it must be respected, then everyone fills the void as he wishes.
Art 3. Human rights.
“Every individual has the right to life, liberty and security of person.”
Perhaps I exaggerate but ...
With my respect and friendship
Could it be that requests for help from pwp became so great they had to pull the plug? Thousands of desperate phone calls or emails asking for free help could have become more than they could handle
Dr. C is recovering from a stroke per Roy’s updates.
Thank you I'm aware of that as per my original reply where I stated: "I don't doubt Dr C's integrity or illness."
Yes I saw that after I posted! Sorry!
No problem at all, it's an emotive subject and I'm grateful for any involvement from our community, which is filled with intelligent and caring folk.
Best wishes to you
For sure!! I am hoping this helps my husband. I believe it will . Just starting slow. I appreciate everyone who takes the time to help others with this disease.
Art or Easilly as he or she or “it” called himself, herself or itself was not affected with Parkinson’s, was not a care provider or a doctor. Presumably, according to its followers here, this entity is an Angel on earth meant to save Parkinson’s patients
Seriously, I have no respect for anyone dispensing advice and not willing to stand by it.
Very Very plausible that someone with a very big interest in suppressing the B1 story has pressured and intimidated. It doesn't take much if you are a big player and B1 comprises a threat to big commerce. A "cease and desist" order is easily purchased. It's like a dinghy getting a missle shot across the bow from a battleship. I wonder whether in Italy it is possible for the public to see when a civil action has been filed.
I was concerned for his safety as soon as I realized it was helping people on a fairly large scale and was becoming well knowb for helping his patients. Dr.s like him are disapearing or turning up dead under unusual circumstance at an alarming rate. I'm a yes.
It’s a YES for me.
It's definitely "YES" for me.
YES. And using 50 mg daily with 100 mg on sat n tues
If it has not helped you, that is unfortunate. I urge you not to give up. My husband isn't quite where we would like him to be, but as his observer, I have seen him without it, and it was horrible. Sleepless nights, anxiety, severe fatigue, slower movements, etc. Most of that was gone or improved inside of a week (he has never had tremors.) He had stopped for a week just to take a break, and those symptoms came back. Placebo or not, I am convinced it works to alleviate some of the symptoms.
As Parkinson's is a disease where no two individuals are alike, I would not be surprised to hear it may not work for everyone.
I wish you luck!
Very definite YES for me. More energy, no stiffness or slowness. Doesn't help tremor through.
Not slowed the progression for me but I have n
More energy, tollerate levodopa far better (clearer thinking, don't feel doped) and 7 years of night calf cramps cured. 'Tennis elbow' pain gone (had for 2 years despite physio).
I occasionally take a break and on about day 10 the cramps come back as does the elbow pain. A couple of days back on and the cramps stop. About 7-10 days the elbow pain goes.
Do you mind my asking what dose you are on?
3g per day
I have tried a couple of times to no effect. Perhaps I lack a something that responds to B1in high doses ; I guess we are all different.
With those getting a good response; I wonder about the Placebo effect in such occurrence, and would be interested to know whether the level of improvements plateau or continue to drive the devil in PD away..?
The main benefits I get are no leg cramps, no tennis elbow and much less brain fog. Very certain that placebo would not have continued for 17 months this effectively.
Parkinsons decline however has continued on but is easier to live with
There are no time limits to Placebo effects.
I went through a period of nearly three years in continual improvements that appeared to suggest I had discovered a possible new remedy with an experimental plant / oil based concoction (Not Cannabinol). Effectively reducing Levodopa dose requirements as though I had regained 5+ yrs. I felt I had regained my youth and then symptoms returned and progression ………
Speculation: you might not have mitochondrial problems related to thiamine.
Thanks aspergerian 13 . My guess is PD develops from and through a multiple of deficiencies, mutations and variants ; which is why the big Cure remains elusive.
There is a mutation called MTHR that affects how the B vitamins are absorbed and how other drugs are absorbed in the body. If you have this mutation you have to take methylated forms of B vitamins. It can be tested through bloodwork. My husband hasn’t been tested but I give him B vitamins that are methylated. The Thiamine isn’t , but you can get all the others. Definitely worth testing or trying!
Thanks Carrie, I tried with a methylated form & at various dose levels.
A big YES
yes! and at a low dose of 100mg/day now. see my profile for details.
It's a NO for me, despite 16 month of trial, with and without Dr Costantini's supervision. Only the first three days after a 10 days "washout" were amazing moments.
I intend to try again, beginning with 25 mg IM injections for a month, and increasing it gradually, by 25 mg per week increments.
I'm in the same boat and will continue with injections because I believe they help. That's some consolation.
Hi MBAnderson, I will keep the group informed of my results. I am still hoping.
Yes - caregiver for Mom. If nothing else it took away the PD mask, and gave Mom more energy. Still working to find right dose. As she suffers from multiple health issues (heart, bladder cancer, bad back) any improvement is a plus to a better quality of life for her.
Yes! 2000mg a day 10 years with PD.
no, none at all
Yes, absolutely!! I've been taking it for only a few weeks and I'm no longer concerned about how I'll make it through the busy summer with work, or about how I'll pay the mortgage and feed my kids if I can't continue my current job. Amazing results (as long as I don't forget to take it or play around with the dosage!)
I feel the same way! How long have you had Parkinson's and may I ask what dose you are taking? Steven
No, unfortunately it didnt work for me. K
helped with easing rolling over in bed, reduced constipation, and walk a little better (still not able to do distance) but I get around.
With out it I would not be ambulatory.
It did not help my husband.
My answer may be interesting as my husband doesn't know he has parkinsons this may seem strange to you but I know he has. I first noticed about 5 years ago if he was stressed his hand shook by his side I had seen this same thing with someone I knew who had Parkinsons and I knew straight away, I have never said anything to him as I know he would be devastated to know but as long as he is not too troubled with it i am not saying anything and just treating him myself, he has always been used to me giving him supplements so he very rarely questions what he is taking if he does i usually say it is for his stomach as he suffers with IBS. I started on thiamine about 6 months ago and noticed he started to sleep better, he was less anxious, a dribble i had noticed from his mouth stopped completely, ringing in his ears seems to have stopped, he is not urinating as often, he used to have to dash very quickly, back pain much better, he doesn't seem to be rolling his fingers as much, these may seem small things but I am trying to keep things under control so that he doesn't have to have pharma meds, i give him mucuna but only 1/4 teaspoon as it upsets his stomach, he has 1 gm thiamine, ashwaghanda, oregano oil, just started turmeric, curcumin and ginger capsules as he is suffering knee pain but think this is more from the golf also hoping this will help his memory as that is worse, he takes magenhance for cramps these are cured, phosphatidylserine trying this for the memory, so on the whole he is doing really well and know anything i give him can't be a placebo effect, he does get very upset easily if he sees anything sad on tv this never used to happen but he doesn't get tremor unless something really stresses him but he never seems to notice the tremor, i suppose i am looking for it
He’s very lucky to have you!
I'll second that!
Your husband is so blessed to have you. I have to take the cue from you. You hv to be so strong to manage everything and keep it all to yourself.
Brilliant. The knowledge of PD is a huge negative.
Yes. It's given me more energy and clarity. It cuts down on tremors, aches and pains, which allows me to exercise much more. I had to stop for 2 months in order to participate in a drug trial and all of these symptoms returned. I'm back on it again and I'm back to all of my exercises now.
My dx was 10 years ago. I take 3 grams a day.
No. I got high blood pressure. I have trouble with the huge difference between the RDA (recommended daily allowance) and the Dr. Constantini protocol of nearly 4 gm. No sane mainstream doctor will endorse or support this. See webmd link: webmd.com/vitamins/ai/ingre...
I also discovered that in the USA, insurance can refuse to pay for conditions caused or exacerbated by unauthorized treatment.
It was mentioned that if your BP is affected you may have to adjust your BP meds
It might be. However, I don’t have the courage to ask my doctor or do it without his approval. He doesn’t even approve Mucuna! He doesn’t dispute that it is Levodopa, only that he can’t measure it or monitor it.
I guess you have to decide if you can find one who can be supportive of other strategies that can work synergistically with yr meds
My blood pressure goes up really high too. When I reach a certain point I have to stop taking thiamine HCL. That is the time when your methylation cycle has been fixed. This is the time when methylation cycle is functioning normally. You can reduce your dosage, you can go without thiamine HCL for quite a while.
I don't see why you pose the question as, 'if it's not a benefit, it's a hoax,' because it ignores the 1st basic truism, which has been said a thousand times, that everybody's different blah blah blah. We are each a snowflake.
That B-1 helps some and not others is not even a commentary on thiamine, it's a commentary on the body chemistry of the person.
Also, just because we do not experience relief from some symptoms, does not mean it is not beneficial.
I discern no benefit, but I inject twice a week because I believe it is beneficial. Pretty much the same story with everything I take. Too often, we expect supplements to have the impact of a pharmaceutical. That's not the way naturally occurring/nutrition/supplements work. I don't expect an anti-inflammatory to reduce my symptoms, but I believe it's smart to take/eat them.
Even though I'm not a big fan, I'm hard-pressed to identify any other substance that has been of such benefit, in varying degrees, to so many people.
Yes for my dad
Yes for my uncle with PSP
You can see the difference when we delay or skip a dosage.
Yes it improved facial expression after a few months but my husband became anxious. He was on 3 g a day . I reduced it down to 1g but still anxious. Now he takes Hardy’s daily essential nutrients as well as other things (see my profile) and the anxiety and depression completely went after 3 days. I am slowly increasing thiamine again to see if he gets any more gains. Currently his symptoms are lack of arm swing, stiff shoulders, increased need to urinate (might be due to excess vitamins although this has been a problem for years) and hands that don’t work well. He has runny nose and excessive saliva.
I think people may need thiamine initially, then run into another shortage once the thiamine is topped up so will need to address that before having any more gains.
YES!! YES!! Yes!!
You could be as simple as a certain amount of Parkinson’s cases are caused by lack of B1. Michael J Fox said himself, that Parkinson’s is many many diseases wrapped up into one disease
How did you and LAJ end up with the same avatar?
What is the vote thus far?
Looks like an over whelming Yes!
Might have to try it again!
Yes. I have been diagnosed nine years, I do not take any medication as I found they did not help my symptoms and the side effects were worse than the symptoms. I started HDT 1 g twice a day and after two months felt remarkably better. I gained back my right arm swing when walking, was able to write a paragraph for the first time in 9 years, able to eat better with my right hand and brush my teeth manually with my right hand. The tremor did not improve. These improvements gave me hope and helped with my depression and anxiety. I continued taking 2 g a day for nine months and then changed it to a different brand as I discovered that the brand I was taking was not hydrochloride B1. The new brand was Vitacost 500mg per tablet. Since using the Vitacost brand I have experienced problems. 2 g per day make me feel very shaky and anxious and unable to function. I stopped taking HDT for 10 days then restarted at 500mg twice a day but found that this was still too much as my tremor was far worse. I Purchased a different brand at 100 mg tablets and find that now if I take more than 200 mg twice a day is too much. Some days I even find 200 mg makes me feel shaky and anxious. I am thinking of going back to the original brand even though it's not hydrochloride.
I am still more functional than before starting the HDT protocol.
YES from me! It removed all rigidity gave me back my energy. I now only have a slight tremor which is removed with minimal madopar. Diagnosed over nine years ago, new friends don't know I have anything wrong with me. Still busy teaching piano, training a choir, painting watercolour, learning a language, gardening....
Glad to hear that you’ve been benefiting from this. Can I ask how you’re able to hide your tremors from friends and family? Does stress affect your tremors? Do you have any strategies? How do you know that B1 helped?
My madopar stops the tremors most of the time. I do practice hand mudras when I’m nervous about something.
I first took B1 in 2017. My rigidity went and I had more energy. I didn’t realise that it was B1 that was helping and stopped it! Very slowly my rigidity returned and my energy left. After nine months I restarted the B1 and once more my symptoms improved.
Absolutely yes! Less stiffness, no leg pain, less urgency, swing of arms back, smile normal, no constipation, better sleep. Diagnosed in Jan 2015, 55 yr old female. Been on HDT since June 2018, tried all different doses. Now on 500 mg. P/d
Plus c/l 25/100 3x p/d plus Ashwagandha, Turmeric, coq10, Magtech, D3.
Doing amazingly well, just have to deal w a little tremor sometimes.
I have been taking thiamin hcl for one year now, currently taking 250-500mg/day. For me, the improvement has occurred in such a subtle way over time that I cannot pinpoint a particular day when I noticed any remarkable change in my symptoms. However, when I look back at my overall state of health this time last year before thiamin hcl, I see that I’m now in much better shape both physically and mentally. I’m glad I didn’t give up.
There are a lot of comments about a lot of different aspects of B-1 on this thread. Wouldn't it be helpful if someone were to organize all this by (reading every single comment of every single thread and) relocating all similar content into the same place. Oh, wait, that's already been done. Some bot did it.
It's ironical that this (help or hoax) thread illustrates the labor-intensive and importance of Art's work.
Dr C had a stroke. To understand, read "Mt Stroke of Inspiration."
Yes! Balance and smell improved. Energy better.
YES! B1 has given me back my life. No exaggeration. 4 months ago I could barely walk even with a walker and could not stand without support. I always felt like I was going to fall backwards so constantly needed to hang on to something. I had a severe right hand and left leg tremor. I could barely move and just trying to do simple things required extreme focus and energy. At the rate I was going I figured I would be in a nursing home soon. My husband was caring for me the best he could but he sometimes works long hours.
I was dx 4 yrs ago, confirmed with dat scan. I can not take Sinemet because my legs collapse and I get dystonia after only a few days. No other PD med gave me any relief. At my last appointment with MDS in December I was barely able to stand from the wheelchair and was told my only other option was DBS and was scheduled to start the process in March.
Then I happened to read a comment on FB PDFU support group about high dose thiamine so I researched, then gave it a try starting right away at 2 grams. 3 days later I felt my balance return and was able to walk without support. Then slowly my body loosened up and the brain fog lifted. A few weeks later I was able to drive for the first time in over a year. Slowly I have built up my strength.
It has been a little over 3 months since I started with b1. I now go to the gym 3x/week where I walk 2-3 miles on a treadmill with full arm swing , yoga class 2x/week doing full yoga poses without balance issues and spend hours doing hard physical yard work almost every day the weather allows. I can once again move my body without thinking. Cooking meals, cleaning house, multitasking, socializing, getting dressed. . . no problem now. My tremors are reduced by 70-90%, depending on the day. It has been simply amazing for me! I am 62, 125 lbs and I take two 500mg tablets at breakfast and 2 more at lunch.
Also, I read on another forum that it is recommended that b1 should not be taken with coffee or tea as they interfere with absorption. So if it hasn't worked for you, maybe try taking it away from coffee or tea. I wait 30 minutes after taking b1 before drinking my tea in the am.
What a great story. I'm so glad for you. Mary
Have you found an other pwp who have a reaction like yours? Have you or your physicians any theories or speculations.
I don't know any pwp but I have been telling many people I know about my improvements and most people have a familly member or friend with PD symptoms so I usually send them links to Dr. C's Website with dosage info. I have yet to hear back that anyone has had same level of success but most of these are casual friends, physical therapist or other service providers that I don't see often. Family and close friends that saw how bad I was before taking thiamine and then saw the amazing changes after, have been spreading the word but unfortunately, if it has helped someone else with PD, I haven't heard about it yet.
I am not scheduled to see my MDS until July. When I rescheduled my March appointment l told him my plans to start high dose thiamine and focus on physical therapy and a plant based diet he just wished me luck with that. I can't wait to see his reaction when I walk in feeling healthy and strong instead of struggling to stand from a wheelchair. Come to think of it, he has never seen me walk in the time I have been seeing him over the last 18 months. I have been struggling for that long
Your anecdotal summary is very important! Thank you.
You can walk now after B1 Therapy? Is that the only thing you changed? Seems too good to be true. If yes, then this is indeed a “hail Jesus , Rise and Walk” moment! You are a “chosen one “, and worthy of the entire medical establishment dropping everything that they are doing and rush to your abandoned wheelchair. This could be a historic moment. Hallelujah.
If this is indeed so dramatically like changing, then this requires further investigation and close follow up. This is nothing short of miraculous and I am worried that some of us might throw in the towel and retry the protocol and abandon all caution. Your post is absolutely enticing and compelling, bordering on the discovery of a medical cure! I am not joking. Do you even realize what you have claimed here? What you are effectively proclaiming is a medical miracle.
Please consider the impact of what you are claiming and the repercussions for the believers and nonbelievers alike. Would you be willing to video document your successful transformation and share with us in detail? Maybe a friend or family member or someone from the local media can help document the moment of truth and spark a leap in treatment that would be worth several decades of research. Can you please help?
I am now able to understand how such anecdotal tales led the “it” -Easilly/Art to issue a full retraction of absolute endorsement and disown all responsibility for any after effects. Stories such as yours will be directly responsible for the altered lives of many of us from here on out! Yes, you will have radically altered the treatment plan for many of us here.
When I said the MDS. has never seen me walk it was because the 2 hour drive to the facility and vast size of the medical building would cause me severe pain in my tremoring left leg from sitting which would trigger more tremors so I would a shaky mess by the time I got to my appointment. I only used a wheelchair for doctors appointments. Sorry, I didn't mean to imply that I was in a wheelchair all the time. I mostly used a walker but even with that I was extremely slow and shaky. At home, I mostly "furniture walked". At times I could walk short distances (30 ft or so) but my balance was so bad that my whole body would shake and I would be desperate to hold on to something for support. I lived with a constant fear of falling.
I think what the b1 did for me was to restore my balance and the rest of the changes feel into place after that. I think I read somewhere that the biggest area of improvement reported by users of high dose thiamine was in balance so I am not alone there.
Was it b1 alone that gave me my "miracle" cure? At the time I started the b1 therapy I had been mostly eating a whole food plant based diet (no eggs, meat or dairy or processed food) for about a month and still continue this now. I was also doing physical therapy with only slight benefits. I have done daily yoga for years and continued this even on days that I could barely move. No other changes in supplements and I was not taking any PD medications.
When I started on the b1 therapy I had no expectations that it would work. Over the last several years I have tried everything, from every supplement associated with improving PD that I read about, to alternative therapies, red lights, blue light, etc., etc. so I expected b1 to be just another failed experiment. I did not record my before/after videos as Dr. C. recommends. Although I do have several videos where I was trying to show my MDS how Sinemet gave me dystonia after only several days. I guess I could record a video of me now to compare.
Apparently it doesn't work for everyone and I wouldn't expect that it would since all of our PD symptoms are different. My PD diagnosis was considered more along the lines of Parkinsonism/Multiple System Atrophy because of the fast progression and the lack of any relief from PD medications. And, yes, according to my dat scan, it is PD. Here are my test results:
nmDAT scan - Severely decreased tracer uptake in the bilateral putamen, right worse than
left. Moderately decreased tracer uptake in the right caudate.
Relatively normal tracer uptake in the left caudate.
Abnormal dopamine transporter study with above findings consistent with a Parkinsonian syndrome.
I'm sorry to give the impression that this is a miracle cure for everyone. Some will benefit, others will not. Normally I shy away from sharing my life online preferring just to hang out in the background but I felt sharing my story was important enough to step out of my comfort zone. The high dose thiamine therapy is low risk, low cost and could benefit many people, not just people with PD. That said, I should say, "check with your doctor first".🙂
Thank you very much for your detailed response. Much appreciated. For a moment though, I had wild hopes :). Oh well.
Hi. What brand and strength B1do you take. I have the injections and they have worked really well but they cost alot. The tablets don't work as good for me but am wondering if I need to try a different sort.Very pleased for you that it has made such a big difference.
I started with Solgar 500 mg from Amazon but switched to Vitacost brand, 500 mg after 1st month. Vitacost is cheaper and easier to swallow. Both brands worked fine for me.
Thanks for sharing this great story, I'm very happy for you.
Did not help me. NO
Yes. Dr C says it works in synergy with sinimet not a replacement for it.
Just asking if anyone knows if B1 is better with or without food?
I thought I had replied yesterday, with some detail, but can't find my reply, so wanted to say "YES" to your survey question. Absolutely remarkable from the first week, though dosing level is a difficult one to figure out.
A huge yes from us!
It’s a little hard to be absolutely certain because I also take Madopar and Rasagiline and I haven’t tried cutting out the B1 and then restarting it (as a test) - but on balance I’m fairly convinced it’s helping me.
I feel generally better now than I did before I started taking it a year ago
"My guy has been on the thiamine therapy for a few weeks. We doubled the dosage this week. Today for the first time in a couple of years he did not have any dyskinesia around dinner and later. Usually it is difficult to sit beside him on the couch because he is bouncing so much. Nothing tonight! We are both delighted and hoping for more good results!" - Susan Hannah
NO, ..............surprise neither did coconut oil, copper braclets or tin hats.
sinemet with B1,who feels B1 has been effective,would you say B1 helps to prolong the effect of sinemet...
would you suggest I increase or decrease or give one of the previous dosages more time? Thank you.
What improvements should be looked for in taking B1? What is the latest time they should be taken? Does...
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