Your 3.28.19 response is MUCH APPRECIATED because I find it DETAILED and RATIONAL !
My background:
3.13.19 START B1 at 500mg/day
146lbs, age 77, 15 months after early phase diagnosis, now updrs 15/100, still ignoring neurologist prescription for Sinemet, one single step backward in reaction to pull-test.
After reflecting on your 3.28.19 input, my journal:
3.29.19 temporarily STOP B1, fearing overdose after full-body shakes interrupted my sleep last night with tripled intensity: 3 times, 2 hrs apart, compared to a single event per night a few days prior; enough to strengthen my suspicion of B1 overdose based on a mild increase in left-arm tremor which I was about to ignore [and continue at 500mg/day]. I now plan to re-start at 250mg after 7days without B1, on 4.4.19
4.1.19 the full-body shakes in my sleep have not re-occurred in the last 3 nights
Q: Do you support my plan to re-start B1 at HALF DOSE [250mg] on 4.4.19 [after a 7-DAYS STOPPAGE] ?
Q: If my symptoms were to worsen significantly in the next 3 days, i.e. if the full-body shakes were to interrupt my sleep again, what would you recommend ? could it be an indication of UNDER-dose and would you recommend a return to 500mg in one step ? or in two steps, as in one-week at 250mg, then 500mg ? or in finer steps of 100mg ? over a different period than one week ?
THANKS again !
MarcP
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Pa-zzi69
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What you are describing is textbook Dr. C strategy to deal with a B-1 overdose situation. Take B-1 at an initially recommended dose, if symptoms improve with the initial dosing, but soon worsen within a week or two, this is a positive indication of B-1 overdose and this is what you are describing . Stop the B-1, give it 3 to 7 days for your B-1 level to reduce back closer to your native B-1 state and then restart at a half dose. This is Dr. C's normal recommendation and has worked quite effectively for many! That's what we are trying to do on this forum is follow his learned advice because he is the one with the years of experience at implementing his HDT protocol! I can't and won't argue with his experience, because there is no need to.
What seems hard for people to grasp is the idea that B-1 dosing for PWPs can be so varied or random. I would say that one mistake that many HDT testers make is assuming that there is some standard dose for HDT............."""""""""THERE IS NO SUCH THING!!!"""""""""
Dr. C made this statement very clearly in his very first answer on the HDT FAQ page here:
Why anyone feels the need to go against that advice is beyond me!
The actual range that we now know for HDT in total is 100 mg to 6,000 mg per day!!! That is a huge spread! I have not seen any members on this forum who required more than 4,000 mg per day, but Dr. C has mentioned that some of his patients in Italy have required that much and possibly more for other neurological disorders. Dr. C has only very recently found that some members of this forum have shown benefit at 100 mg/day, whereas his previous low was 500 mg/day. I can't say for sure, but I think there may be one forum member who is possibly using less than 100 mg/day because they were still getting mild overdose symptoms and was considering staying at the 100 mg/day dosing except possibly skip a day now and again in order to avoid any B-1 od symptoms!
My husband was on 500 mg B1. He had been on 1 g earlier and had active sleep jerking and punching in his sleep. After stopping 5 days, In the 2 weeks of 500 mg had 3 episodes of jerking in sleep. I stopped for 4 days during which he did not sleep well almost immediately but no jerking. I have just started again at 350 mg because he takes a B complex which has 250 mg thiamine mononitrate, B6 250 mg and B12 1000 mcg and an additional 100 mg of thiamine HCL. Hope we are near his optimum dose.
This is important information for the members to be aware of, because once again, it confirms that there is no standard dose for HDT and the majority of members are finding their optimum dose well below 4 grams/day with the newest low and somewhere below 100 mg /day!
I will copy and paste your post into the HDT Dosing thread.
If I may note a point you made, the b complex you take has thiamine MONONITRATE...the mononitrate has been severely criticized by several people as being potentially toxic and inappropriate in any case due to its different chemical construction, being lipophilic, which means it collects in your fat (adipose) tissue and may be toxic on its own chemical account...if you are locked into mononitrate because that is what they sell in the b-complex vitamin preparations, then it may be advisable, if not very important, to stop that and buy your b's separately or at least in a way that you can not be taking the mononitrate. It seems to be important to make the distinction to not forget that the word "HCL" is as much as part of the substance name as the word "thiamine."
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