I have been reading everything I could get my hands on that was about vitamin B1 over the last couple years and I tried one B1 100 mg per day for one week about a year ago. It did not help and actually it seemed to make shaking worse.
Finally I purchased Daphne Bryan's book "Parkinson's and the B1 Therapy "and read it twice. and I came to three conclusions:
1/ That the reason my first attempt did not work was that it was Thiamine Mononitrate , so I purchased some Thiamine Hydrochloride (HCL)
2/ That I should obtain an appointment to meet with my family doctor GP and ask him for a B1 intramuscular shot and get him to show me how to administer it and a prescription for needles and B1.
3/ Should I not be able to accomplish 2/ above that I would obtain some Sublingual B1 tablets from Superior Source in the UK.
In the meantime I descided to try one B1 100 mg tablet of HCL . almost immediately I started having a nagging pain in my stomach and then Nausea and after 30 min my right hand started to shake . I can stop it by thinking about it but at rest I am constantly tapping the table or the side of my leg. I have never had this hand shaking like this before.
The next day I tried again same result.
Question:
What next ?
Should I continue to make the doctors appt to try to get a B1 shot or is this an allergy I am experiencing? Same with Sublingual tablets , should I try again or accept that I can not take it or try a lower dose of 50 mg ( so much for high dose therapy)
thanks for any help
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Gymsack
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2 / I could also easily obtain a bottle of B100 Complex Time release which would double the amount of each ingredient.
3 / I also have a bottle of Chewable One a Day Multi-Vitamins ( too big to swallow) each one contains :
Vit A-300 mcg, Beta- Carotene- 1800 mcg, Vit E- 33 mg, Vit C -90 mg, Folate - 400 mcg, Vit B1 mononitrate- 3.25 mg, Vit B2 -3.2 mg, Niacinamide- 15 mg, Vit B6 -8mgm, B12-25mcg, Vit D - 15 mcg, Vit K1-25 mcg and 10 minerals.
I am considering trying one Time Release B50 with one Chewable multy Vitamin and if that does not work then one Time release B100 with one chewable multy viitamin.
Wow… you say you read daphne Bryan’s book. Well I think you need to read it again. The b1 therapy is very simple and easy to follow. So KEEP IT SIMPLE
start with a bcomplex with low b6 preferred 5 mg but up to 10mg is ok.
Add in your chosen magnesium
Do this for four weeks then add in your chosen b1 Sublingual or Oral
Sublingual start dose 50mg M W F. NOT 100mg
If you choose Oral daily start dose can be as low as 100mg or up to 500mg depending on your age, size and length of time with PD
B12 will also be needed
Until you find your sweet spot NO other supplements are required to muddy the results. Monitor and record daily every tiny change. Watch for OD symptoms and do not consider changing dose for at least 6 weeks unless OD signs.
I just found another post here at Health Unlock by Dr. Daphne Bryan about sublingual medication that explains a lot and compounding medications and why they work better .
I had corresponded with Dr Costantini himself, and he took care of me via email for the Thiamine HCl therapy treatment. I initially started on 4000mg per day. After 2 to 3 months, my UPDRS went from 31 to 21, and I wrote to Dr C to ask if I needed further adjustment in the dosage. Here is his reply:
"Please take a short videotape of your face while speaking and your walk to be kept as a reference for the future.
To determine the right dose in future we follow the following criteria. First of all it is necessary to say that if the dose of thiamine used is excessive it can determine, after an initial improvement, an aggravation of the first improved symptoms. In this case we invite the patient to suspend treatment with thiamine for a week, the worsening regresses and then can be restarted with halved or in any case lower doses. The right dose should not give the side effects of overdose, improve at least 50% all the symptoms of the UPDRS scale, and bring the PULL TEST to normal, which is almost always pathological, is often present even in the early stages of the disease and also reveals in the early phase the disturbances of equilibrium. As a rule, if a strong push towards the back is given to the Parkinsonian patient, he / she takes a few steps or falls. This symptom is only improved by thiamine being insensitive to other treatments. The normalization of the patient’s response tells us the dose of thiamine is the right one.
The normal subject to the push is still or at most takes a step backwards.
However, you could increase the dose to 5 grams or even six. If it is excessive, instead of improving, you can get worse and return to the previous dose. The right dose of thiamine, taken regularly, completely stops the progression of the disease, drastically reduces non-motor symptoms, and corrects balance disorders. It strongly reduces motor symptoms but is not capable of making them disappear on its own as the surviving cells of the substantia nigra, even if they are restored, are not able to carry out the functions of the entire healthy nucleus. To obtain complete regression of motor symptoms it is necessary to add the right dose of levodopa which will never again cause the so-called late complications. We have had patients with your same characteristics who no longer show any motor symptoms for years and for several years. Keep me informed. A greeting. B.C"
I then tried 5000mg for a month, no difference. Then 6000mg for a month, and no difference. So I remained at 4000mg per day for several years. I developed hypertension but didnt realize it was from the Thiamine at the time. Eventually, I learned that I could take a single sublingual B1 once per week and get the same results as 4000mg regular per day. After I switched to sublingual, I started feeling signs that my pressure was dropping, and with the ok from my primary doctor I was able to discontinue my blood pressure meds safely. My blood pressure is perfectly normal now without medication. I am currently on a break from Thiamine HCl 100mg sublingual, its been 2 weeks since Ive taken it. I will start up again in about 2 more weeks. Maybe less.
This is all just to help you to figure out your dose for yourself. Im not prescribing anything to you, FYI. But I cant imagine taking a single 100mg per day is going to do anything for you unless its either sublingual, or in this case since you are having an adverse reaction, you might be sensitive to something else thats in the pills, like fillers and stuff.
Some good brands that worked well for me were Solgar and Vitacost. They also happened to be the least expensive and came in high dose tablets or capsules. I think 500mg or 1000mg.
Thanks Bass I think with the negative reaction I got just taking 100 mg B1 that it would be foolish to take much more by swallowing and I will try to get a series of shots and order the Sub Lingual B1 that Dap takes as a back up.
as soon as I can find it again I will acknowledge it
There's more to it however. For starters, if B6 meets up with levodopa medication in the GI tract they will inactivate each other, so they must be taken at separate times. (This happens in the bloodstream too, but to a lesser extent because they are more dilute in circulation. Also, this is why levodopa medication uses up a lot of B6).
In addition there are two different forms of B6 commonly available as supplements, one of which is toxic. The toxic one is known as pyridoxine.The other is pyridoxal-5-phosphate, commonly known as P5P. It has a phosphate group attached, and is the active form. When it participates in reactions the phosphate group is detached. This must be restored for it to become active again. The inactive form, pyridoxine, if taken in quantity as a supplement, occupies sites that require the active form. It thereby sabotages essential reactions, and that makes it toxic. For more detail, including chemical structures,
The B6 in my B50 Complex is Pyridoxine Hydrochloride, The "toxic one" so I need a new B Complex. and the same in my multy vitamine . (either someone is exaggerating the risk of B6 or terminology is misinterpreted . because every other source of info on B6 that I can find talks about the desperate need that the body has for B6 and never mention toxins.
This from the FDA regarding interaction between B6 and Sinemet (and maybe applies to Madopar?). Is this advice unreliable?
"Pyridoxine hydrochloride (vitamin B6), in oral doses of 10 mg to 25 mg, may reverse the effects of levodopa by increasing the rate of aromatic amino acid decarboxylation. Carbidopa inhibits this action of pyridoxine; therefore, SINEMET can be given to patients receiving supplemental pyridoxine ( B6)."
Thank you , sounds great . who am I to argue with those wonderful people at the FDA. I have observed that information and contradictory information lies helter skelter and I feel I am standing on the shoulders of giants and trying to gather the bits of gold they found . I am feeling much more optimistic now with your post.
The reason that I am interested in B1 is that every time I take a 100 mg of B1 I get a bout of my right hand shaking and that is the only time it has happened . That indicates to me that there is some kind of relationship , maybe the result of B1 entering my bowls and I am curious what will happen taking B1 by sublingual or injection methods.
I can not find any HCL that can be taken sublingual . But it does not have to go through the gut and she has had success. I am still waiting for delivery .
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Vitamin B1 (Thiamine HCl) and Parkinson's
B1 effect?:)
