I have thought about writing this for months. I began taking high doses of Thiamine Hcl in May of 2018, just 3 weeks after I was diagnosed. My disease has progressed very slowly and I believe my daily high dose of 1.5 grams of thiamine has been very beneficial. I am still not on any medication and terrible handwriting remains my most discouraging symptom, so I have nothing to complain about. Yet, I know that I am slightly slower, my handwriting is getting worse and I have been battling a new symptom -- toe dystonia during intense exercise. I'm sharing this only because I want "newbies" to know the truth. I still HIGHLY recommend high doses of thiamine, but I think those of us who have been on it need to be honest with ourselves and with each other. High doses of thiamine will not stop the progression of Parkinson's disease.
I Believe High Dose Thiamine (Vitamin B1)... - Cure Parkinson's
I Believe High Dose Thiamine (Vitamin B1) is Helpful, But I Do Not Believe It STOPS the Progression of Parkinson's Disease.
My PD is also progressing slowly, ie, in the wrong direction. Tremor is my main symptom and it’s getting worse. The good news is I’m still active and fit.
Time will tell.
For me , B1 definitely improved my symptoms and seemed to stop progression. When I did get worse after 6 months I dropped my dose and went back to the way it was.
You may be right but for me it seems to be going in the right direction. I think it is too early to tell for me.
My experience is different. My symptoms wax and wane. That said, I need less levodopa now than I was taking three years ago, and I recently passed my five year anniversary since diagnosis. I have been taking high-dose thiamine for almost 2 years. I do have new symptoms but then on the other hand there are old symptoms I do not have. I am also doing other interventions in addition to thiamine. So my situation is complex. It is not clear that I am suffering progression.
I think our experiences are quite similar park_bear. Some days are better than other days and in general I still feel better than when I was diagnosed. Some symptoms have improved and I don't know how much credit to attribute to thiamine. I just don't think my Parkinson's progession has "stopped." Slowed? Hopefully...but there's no way to measure that.
Useful feedback. Thanks Jim. I think the fluctuations in the symptoms make it both hard to assess progress and for me hard to assess symptomatic relief. Like you I am pretty sure things are getting slowly worse. But like you I think they are maybe better than at diagnosis. Unlike you, I'm not (yet) taking high dose thiamine.
How do you determine your dose if you are not experiencing a therapeutic effect?
And as discussed, how do you determine a therapeutic effect when symptoms fluctuate anyway?
"Things are slowly getting worse... things are better than at diagnosis"
How is that possible?
I fell off a cliff post diagnosis. Maybe partly due to stopping amlodopine. I was diagnosed March 2018, and had episodes of complete inability to tolerate cold, quite severe shaking, aches and pains and rigidity. I can remember in July 2018 my left arm shaking like a leaf after carrying a 5 litre weedkiller sprayer for an hour, and coming in and saying "I'm not going to be able to keep doing these things" . Then things seem to have improved - a lot. I suspect exercise, stress management, microbiome management and attitude are primarily responsible, but supplements and the SPARK trial might be involved. But I am aware of a very slight tremor in my right hand now, and I have some days where my left arm is more wobbly (Bizarrly I'm writing this, without any tremor, and with the best touch typing mobility I've had for months, just back from my first dog walk in 3 days - torrential rain and flooding have stopped my exercise).
It's bloody confusing - that's for sure. A lot of fluctuations and variations. But un-noticed before Jan 2018, bad March to November 2018, significantly better since Jan 2019, but more mild issues showing up in the last 3 months. Looking foward to moving onto part 2 of the SPARK trial in a couple of weeks.
If you are using ANY weed killer besides 30% vinegar, you are playing with toxins.
In my case, I think I have more energy, less brain fog, less apathy, better arm swing and I feel pretty normal compared to when I was diagnosed, BUT my typing is worse, my gait sometimes seems a little worse (right foot drags) and this toe cramping during intense exercise is new and particularly frustrating because I still think intense exercise is vital. Maybe I have drawn too fine of a line. My point is that while dozens of us (including me) believe we have benefitted from High Dose Thiamine, it does not STOP progression and I think it's important to make that distinction.
I have found that walking barefoot for a stretch relieves the toe cramping.
Thanks for the tip! I've tried topical magnesium oil an magnesium L-Threonate, but didn't have any success. I now jog for 50 seconds, stand or walk for 10 seconds and then repeat for 33 minutes. It isn't quite as good as jogging for 30 minutes, but it still gets my heart rate up to 135ish bpm.
I know you take no meds yet. My experience is that high intensity exercise is more important than anything else in my régimen. The one time I lowered my exercise, traveling for three weeks, my symptoms got significantly worse. You might want to consider taking c/l 30 minutes or so before exercise, even if that’s the only time you take them. My neurologist made that suggestion when my toe cramping started. I didn’t try it then, but it probably would have allowed me to exercise more at that point.
Toe cramping. It was one of my first symptoms, foot dystonia. Fir the first couple of years using Vibram shoes that have separate toes worked quite well. I started c/l 3.5 years post diagnosis. The toe cramping stopped immediately. I’m now 4.5 yrs post diagnosis. If I don’t wait too long between c/l doses, I still get no cramping.
I think it's worth trying and I think/hope it's beneficial, but I want to be realistic and truthful. There's a major difference between slowing and stopping progression.
Yes I'm minded to try it - later this year. I want to get clear of the (possible) change in the SPARK trial dosage next month before I do, or it risks getting too confusing. (As it is, starting Doxazosin next week will confuse things, but my urologist has instigated it)
What I'm not clear on is how to set a dose. Royprop would weigh in with 4gm and use a pull test to determine. I currently have a pull test like a professional rugby prop-forward, so no guidance there. And many others seem to struggle with fine tuning (I see one has already suggested that your mistaken assumption B1 doesn't stop progression indicates you are taking the wrong dose).
The benefits are supposed to arise gradually - so much so, Dr C recommended videos to monitor progress. But my symptoms are so relatively mild, and fluctuate so much anyway, hour to hour, and month to month, I'm not sure what I could use as a reference for a dose.
I think we are about the same age (I'm 57) and were diagnosed about the same time and have similar symptoms. I weigh approximately 195 lbs (88 kg). Dr. C. started me at 3 grams per day, but we fairly quickly dropped to 2 grams and then to 1.5. Again, I sincerely believe it's helpful and I don't want to be a killjoy, but "slowing" and "stopping" are very important differences.
Thanks. I'll bear that in mind for later in the year
Sadly I agree. There is nothing and we are grasping at straws
There is no silver bullet for these lifestyle ailments.
A better approach is the one taken by Dr.Bredesen in his work with Alzheimer’s patients.
He reverses cognitive decline by fixing the neurodegeneration caused by “36 holes in the roof” of the brain. He fingers at least 36 perpetrators that lead to the diagnosis of cognitive decline, and eventually Alzheimer’s disease.
Alzheimer’s then, is not a disease with one specific path of destruction, but rather one that develops insidiously from a variety of deficiencies and hidden toxins that can begin as early as 20 years prior to diagnosis!
He points to three different processes leading to Alzheimer’s: inflammation, suboptimal levels of nutrients and other synapse-supporting molecules, and toxic exposures.
I believe something similar is going on with Parkinson patients. His book ‘The End Of Alzheimer’s’ is a must read for any one with a degenerative disease.
Let’s be clear: there are no silver bullets for these lifestyle diseases. Do not look for one.
I've seen Type 2 diabetes referred to as a "lifestyle disease", but I think this is the first time that I've seen PD and AD referred to as such!
I am certainly taking liberties here.
But Alzheimer’s disease has been labeled Diabetes III by some researchers as one of its hallmarks is poor glucose processing by the brain. The linkage to Parkinson’s is more personal and observational as high sugar content food brings on the shakes in my spouse- the pwp.
Lifestyle changes in diet and targeted supplementation has been very helpful in keeping the myriad of Parkinson symptoms at bay.
My readings suggest that lifestyle and environmental conditions are key players in non-communicable diseases.
I'm curious about the "lifestyle" part of your comment. I think genetics plays a bigger role than previously believed and environmental causes are well documented, but with the possible exception of boxers and American football players, I'm not aware of lifestyle choices leading to Parkinson's, although I agree that diet and exercise are very important after a person is diagnosed.
If diet and exercise by your admission is important after diagnosis, then why is it not a factor pre-diagnosis.
I can not point you to a study that shows the importance of lifestyle pre-diagnosis for Parkinson. Hell! We do not even have a handle on the cause.
But the fact that for both Parkinson and Alzheimer’s an anti-inflammatory type diet helps points a finger to lifestyle.
My hypothesis is that there is much too much sugar in the standard western diet. Only time will tell if this is the root cause of so many of our problems.
That's fair. I just know that PD strikes athletes, dietitians, non-Westerners, and people who took very good care of themselves before they were diagnosed. It's bad enough to have the disease, but even worse to wonder if we are somehow to blame. Maybe I am being too defensive, but I honestly don't think "lifestyle" is a cause for many of us, if any.
At this point n=1.
My wife for one thought she had a healthy diet. And it was hell convincing her that her diet had failed her and she should change it.
The dietary change and supplements meant no more constipation, no more sky high blood pressure, no more lightheaded feelings - probably from a yo-yo insulin response. Modest weight loss with no exercise or restricted diet.
There might of course be an environmental vector or even genetic one for this disease, but I sometimes wonder what her fate might have been the same without the metabolic disorders that troubled her pre-Parkinson🌺
My impression is that we all have different levels of sensitivity to different “lifestyle” factors, and those levels of sensitivity are genetically determined. Thus, both the “lifestyle” and genetic points of view are valid.
My father had PD, as do I, so I’m sure there’s a genetic component there. My mother lived basically the same lifestyle as he did for 50 years, but she is 99 now and still pretty sharp with no major disease. We don’t know what cards we’ll be dealt so we don’t know what lifestyle choices we need to make!
Once we get a big red flag like PD, we have the opportunity to figure out what choices can help us improve our chances of living longer and healthier. Not our fault we didn’t make those choices earlier, we couldn’t know.
Hopefully genetic science will advance to where people can find out earlier what they are susceptible to and take the appropriate measures to stay healthy, like reducing toxic exposures, sugar consumption, exercising more, etc.
Yes Jim , I am one of those people who has always taken care of herself , an ultra runner and gym rat. Diagnosed at 49 and will be 57 this year. Obviously my healthy lifestyle didn’t stop me from PD , Cancer and experiencing severed muscles. Of course a healthy life style helps you to feel better in general but with PD , for me every day is different . I was one of the unfortunate ones the B1 didn’t help at all , made me feel worse but I am all for people trying alternatives and when one helps that’s great. About the time I think I’ve gotten my PD and body figured out on a good routine a new symptom appears and changes things. PD likes to surprise us and it’s a missable disease. Take care everyone. Karen
I thought that the optimum dose was 4gram daily dependant on reactions
The "4 grams being the optimal dose" myth is troubling to me. I still believe thiamine is beneficial, but Dr. C. NEVER told me to take 4 grams and, in fact, told me that 2 grams was too much for me. The optimal dose varies considerably, depending on severity of symptoms, weight, etc.
Hi Jim, Thank you for your honesty!
Your symptoms simply indicated that your needed dose was not 1,5g .. Sometimes it requires minimal adjustment, sometimes it is much more difficult to regulate ..The right dose is very individual, just work on that. Otherwise jumping to high conclusions is easier and brings no cure..
After nearly two years, I'm confident in the dosage and I am very familiar with the signs of overdosing and underdosing and suspending B1 for several days and halving the dose if it's too much, etc. By all means, I will continue with B1, but I think it's irresponsible to tell people that it stops progression. Slows? Hopefully. Stops progression completely? I'm interested if someone who has taken it for 2 years (Roy Prop, Gio, Kia17) to say it has unequivocally stopped progression.
Well I am not 2 years, but 20 months and definitely feel much better.. Started working again and people do not believe i have PD since 11 years..
That's awesome!! I dare say that most people wouldn't have a clue that I have Parkinson's disease, either. I have no resting tremor and my symptoms are very mild...but I am only 20 months post diagnosis, not 11 years. Congratulations!
Good for you 👍🏾 And spread the word.
I for one believe it is no ‘silver bullet’ but I have extensively researched it and do pay attention to those who have got good results.
I have placed it in my spouse supplementation regime, even though I see nothing of the miraculous benefits so many have spoken about 🌺
It is not miracles at all.. It is a hard work, patience and dedication. It is a constant fight and listening to your body to adjust.. and by the way very carefully reading and learning of what exactly Dr C is trying to explain. All necessary info is there, just have to see it.. or the easier alternative is just to become nonbeliever..
Jim ,
It's not the first time you've worried about this and you've asked me the same thing in the past. See here.
healthunlocked.com/parkinso...
I could answer you by discussing HDT protocol, which includes the use of ldopa , or other supplements you take , but today I feel like telling you this:
IMHO my friend you are doing very well compared to many of us whatever you are doing produces a good result on you and your future life will not be very different in my opinion. You don't have strong tremors, you don't have constipation, you don't have stiffness, you don't have stiffness tiredness, etc...correct me if I'm wrong.
Do you remember the day of the PD diagnosis? That day the stars, the sun and the moon suddenly fell. Space and time of your life collapsed in an instant, right? No good experience.
That seems to reoccur when a symptom gets worse.
But now they're all back where they belong.
You still believe in a desirable future, thanks to the people here who helped, I think.
Good! We'll survive.
Every life form follows a cycle that is birth, growth, decay and death.
It is so because of the conflicts in this universe which is very hostile to life. I point out that the beauty of sunset is due to the atmospheric dust irradiated by rays that would roast every cell of your body if there was no atmosphere.
No life form survives forever.
After four years I decreased my ldopa by 30% because it was too much and I have more rigidity but only at night so I take a madopar in the evening extendent release.
This doesn't mean anything because as every person knows, it is not the amount of ldopa that is the point of reference for progression, but tests like UPDRs done by a professional, in the absence of a precise biomarker or objective diagnostic examination of the progression.
Each slowdown leads us to a better therapy under better conditions. That's no small thing.
Stopping progression is a relative thing in the context of the life of a body , Isn't it?
I am not a super-precise of the web, what matters to me and what I need is an almost normal life for the next 20 years and I do not ask for more, trying is my right, the right to life. I can not wait.
Gio
Excellent reply and I agree with you, Gio. Maybe it's because of my legal background, but the distinction between slowing progression and stopping progression seems very significant to me. I am very grateful to Dr. Costantini and I am a big fan of High Dose Thiamine. However, I don't think newly diagnosed people should be told to find their proper dose of thiamine and nothing will get worse or that they are doing something wrong with their dose if progression doesn't stop. Maybe I have opened a can of worms. That was not my intention.
When Dr C examined me for the first time my UPDRS was 11 and after 4 months it became 2. If I do that now (2.5 years after HDT) the UPDRS would be less than 2. I put the terminology of “slowing down or stopping “aside.
Jim
Donot look for your toe dystonia in your foot. Work on the hip flexor and extensor. That’s the way out of toes dystonia.
One of my husbands first symptoms nearly 14 years ago was toe curling and cramping , especially when he was out running , he had to give up running . Once he started on medication the toe curling stopped , he’s back running again . Could be it’s time you started on medication so you can keep up the exercise ? 🏃♂️
That's the question I am asking myself. So far, I am still able to jog at about 5.5 mph for over 30 minutes and the toe curling lessens after a few minutes. If I ever lose the ability to work out intensely, I'll take medication, but I'm not there yet.
Evidence now suggests there’s no benefit from delaying medication, if you start you will be able to exercise more and exercise will delay hopefully progression . 😀
Wow, amazing that your husband can still run 14 years past diagnosis. My husband is 14.5 years post diagnosis but because of arthritis & back pain is very immobile. Btw he has been taking HDT for about 2 years but don't know if he's on the right dose as he is unable to do a pull test due to the fact it is too painful for him to stand and his balance is so poor.
He works very hard at keeping himself fit ( on the golf course at the moment) . He started medication 2 years after diagnosis, which meant he was able to keep working as a headteacher for another 8 years . Since retiring 5 years ago he has concentrated on keeping as healthy as possible, a well balanced diet , (no faddy diets just minimal processed foods, freshly cooked as far as is realistic ), taking medication on time - essential- and exercise, golf, running - no more marathons short runs - and gym / Pilates he goes to a physio led gym 4 times a week . Don’t get me wrong he has bad days and his sleep is poor , evening activities are limited as he goes to bed 8.30 ish but we can cope with that 😀
I don't agree! I haven't seen any progress of the disease. I've been on B1 since June 2017. I have not increased my daily 200mg of ldopa since 2016. I was diagnosed ten years ago. People can't see I have PD. Of course I do other things like walking and I play piano for an hour each day. My handwriting and typing and piano playing continue to improve and return to what they were before PD. I do monitor B1 dosage and symptoms however and make fine adjustments when needed.
Sorry not sure what you don’t agree with ?
Sorry,-
I don't agree that B1 doesn't stop progressions. i.e. I believe it does stop progression, based on my symptoms not having progressed.
Oh yes I agree 😀and I think it reverses some symptoms, Johns sense of smell returned ( it was one of his first symptoms looking back even before diagnosis). Do you only take 200mg in total of ldopa a day ? X
Yes, I take 100mg at breakfast and 50mg at lunch and dinner. My only symptom now is a slight tremor and I find that dose takes that away and leaves me feeling calm.
I remember that you were taking some other form of B1 (Benfotiamine)?
Yes. I take B1 in a sublingual tablet that I place under my tongue and let dissolve. It goes straight into the bloodstream so, as you are not losing any in the digestive tract, you don't need so much, neither does it need to be HCL version. I buy superior source microlingual B1 from healthmonthly.co.uk/product...
Or I believe it's available from Amazon.com. I started on 100mg a day and am now down to one 100mg tablet four days a week.
I find I only need 50 mg B1, every other day. More than that makes my tremor worse. ( I am tremor dominant)
Hey Jim, I recently had seen a post you had about extremely cold or sweaty hands and feet. I went back to respond to you and it said it was deleted. I have extremely cold feet and hands no matter how many socks or gloves I wear. I thought maybe it was a circulation issue but that’s all good for me: I believe my issue is part of my PD and my Dystonia . I receive Botox in my feet and lower extremities to help with the dystonia . Wondered if the Botox could be causing sensitivity issues .. But wouldn’t stop getting the Botox injections bc it helps me. Karen
I deleted it because there was already a similar thread. I'm really tempted to try Botox to address toe dystonia. It works for you? I'm not on medication yet, but toe curling is preventing me from running so I need to do something...
Jim, it does work for me but my cd/ld is also the most help. Botox as with everything , works for some some it doesn’t . I receive my injections every 3 months . Just make sure dr checks that your insurance approved it . Mine is $3300.00 each time and I am fortunate it is covered . And if it’s not approved , appeal it . 💪 😊. You are fortunate to be able to not take meds yet. My dystonia became so painful and debilitating that I had to start meds and it was amazing . Don’t let yourself be miserable and in pain to hold off taking meds . I understand totally but this is the time in your life you want to be present and enjoy life . Take care Karen
I agree it won’t stop it nothing stops it that I am aware of
But it can slow the progress and a friend of mine could not whisk an egg last year but after being on B1 she can so it is not a universal treatment for all but thank god some of us can be helped along in life taking it
I can now snap my fingers and type more freely... probably the result of HDT. I’m on 5mg x2 /d Selegiline and use Mannitol, as well . Sense of smell has returned ( mannitol or HDT? ) but altogether These are improvements ( not placebo )!
That's great! I agree that HDT has helped too many people in too many ways for too long to be a placebo. I was probably naive to think I might never need medication and I'm still not taking any. However, if the dystonia in my toes during exercise becomes more problematic, I'll have to begin taking medication, which was a sign of disease progression which I hoped never to experience. That said, I believe HDT slows progression.
Hi Jim, I don't know when it was the last time you had your homocysteine level checked, but I'd be cautious of the total/excess B3 and folate intake. Be sure you're not going deficient in B6. I wonder if you're an undermethylator and if so, taking too much of folate/niacin could waste the available methyl donors and tax the methyl metabolism, which could affect your neurotransmitter regulations. I see that you're taking Tru Niagen and B complex (and possibly a multi on top?) but niacin is a major deacetylases inhibitor and could knock the dopamine level down by promoting the reuptake activity, so aim for the total of less than 50mg max per day. I see you've tried supplementing extra magnesium L-Threonate to no avail but I'd keep at it. Adding extra zinc (less than 50mg, ideally around 35mg total a day) might also a good idea. Try adding Creatine supplementation (be sure to drink copious amount of water) and that'll help spare the need for extra methylation to help B1 do its job. Adding some TMG/DMG may also be a good idea.
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