Not to cause further confusion I share today’s experience. All night and all morning my tremors were bothersome. For example it was very difficult to type on my cellphone. For my noon dose of B1 I increased from two grams to three grams. Within the hour my tremors under control and typing possible. Was it dose or simply normal fluctuations.
People have reported fluctuations like that, but usually mainly when starting out on B-1 and you have been taking it for years.
Dr. C always felt that after many months of regular use, you should be able to take a mini vacation from B-1 at anytime because there should be enough of a reserve as well as a certain degree of cellular repair that should be able to carry you for awhile. At a minimum, he had mentioned three days with no problems, but as much as a week or two and with someone who has been on it as long as you, he talked about a month or more with no B-1 and no problem. He said in other neurodegenerative disorders, he used higher dosing, but I never heard him say more than 4 grams for PD, so you are at the very top of his PD dosing range. Didn't you once test at higher than 4,000 mg / day? How did you react to that dose?
For someone on B-1 for years, Dr. C felt that it was no problem at all to miss a dose or two
Roy, recently you went off B-1, but I didn't see if you said how long you did that for. If it was long enough for all of your symptoms to return to their pre-B-1 levels, do you feel that those base symptoms were worse than or equal to when you started on B-1?
Feeling good. Except for lingering edema. Which I will discuss with my neurologist next week. Got more sleep in last night after I took capsule 25mg THC
Edima brings to mind a book about Emanuel Revici Md . “ The Doctor Who Cures Cancer“ He talked of being in an Anabolic or Catabolic state. I can’t find my book right now. But it has a chapter on what you can do with what Revici learned treating cancer patients. Evening primrose oil has an anabolic effect. codliver oil has a catabolic effect. I think flax seed oil has a catabolic effect. I had a client who had bad edima. Taking and massaging in Flaxseed oil reduced her Edima.
B1 has never been beneficial for tremors to me. My tremors are very random. Some days much worse or better than others. I’ve been from 500-4000 mg testing. Settled on 500 mg. Dr C wrote to me stating could take off weekends or similar and would not effect dosage
Roy, I have noticed that the “ end of the bottle” of B1 does not seem as effective as a fresh new bottle. Ken uses Vitacost brand which has 300 capsules. At four capsules a day, it lasts a long time. Started thinking that opening the bottle daily x 75 days might be degrading the vitamin!
Now I put a limited amount in a separate container and work off that, refilling only when needed.
Doing the same with his c/l and Amantadine.
Not sure if this has anything to do with your situation but it is something to be aware of, especially as we fill RX for 90 days. and B1 bottle lasts a long time.
A rescue dose of B1 could not work that fast. Honestly, i suspect it was the placebo effect , which pwp are very much susceptible to . Feel better Roy!
I stopped B1 for the last four days and my tremor is almost gone. But I know I have to restart it and probably I'll go 500mg/day for a while. I started 2g/day two years ago, cut to 1g/day an year later and now I'll go with 0.5g/day to see what happens.
I remember when I wrote the post about forum members having to reduce their dose after 6 to 18 months on HDT/B-1, I speculated that it was possible for that same situation to happen again somewhere down the line and now here you are! Here is a link to that post :
Any thoughts to reporting approximate body weight to B1 doses? I am imagining a rough relationship, which would then be a bit of a guide for all of us...for instance I am male and do 1gm B1 daily and weigh about 145 lbs...Along with sinemet and lots of other vitamins, I am doing pretty well.
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