Dr C suggested starting on 1 gram. After 3 days I was energised but getting a low level internal tremor. After a week I stopped for 5 days then reduced level to 500mg. Gradually started increasing it to 750mg and finally back up to a gram. No internal tremor but after a week suddenly got all my Parkinsons symptoms back.
Assuming I’d gone over the top I stopped for 5 days. I’m assuming 750mg is about my dose. I’ll write this all down for Dr C and hope I can soon resume with 500mg working back up to 750mg
I pushed back up to 1gram in the hope of having that heightened energy but I suppose it was too much.
Bizarrely having had worse right hand tremor for several days yesterday I had no tremor at all for most of the day -could it be that as my B1 levels drop I touched on my ideal level?
Opinions gratefully accepted.
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Annieartist
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There is always the possibility that your optimum dosage is 500mg or less - seems to be so in my case (if it works at all). But it appears that dosage is a very individual thing - as are PD symptoms.
I agree Dingler. I worked up to 3 grams/day. (Solger B1 500 mg) My energy level and motivation dropped significantly. Dialed it down to 2 grams. Then cut back to one gram, and I noticed a slight improvement. I'm currently down to 500mg/day, one tablet in the morning. My energy and motivation are slowing coming back. Dominate tremor in my hand is almost non existent. I also take C/L 25/100's 4 times daily. Also taking Benztropine 1/2mg twice/day.
This is a tough disease to get a hold of. (dialing in the correct medications and dosages.)
I'm 64, and was diagnosed almost 2 years ago. Part of the problem I have is deciphering what symptoms are caused by PD, and what are just a result of the aging process....
Currently, I struggle with speaking (coming up with the correct words). Also, according to my wife, I'm not a good listener. I've kinda struggled with this for about 43 years...HA!
Cognitive ability is declining. Simple written instructions give me problems. I some times have to read something over 3-4 times before I get it!
Over all, I feel VERY blessed to only be dealing with the symptoms I currently have.
VERY pleased that I found this site. A lot of good people on here. I read all the posts, daily. Thank you ALL for your guidance and support!
The book "Alzheimer's, What if there is a Cure" by Mary Newport MD. Is about taking coconut oil and or MCT oil for memory. She mentions PD several times and says it's helped by coconut oil, which converts to ketones in your liver.
The information you just gave in your post above is part of what Dr. C needs to know in order to determine if the dose is too high or too low. The fact that you respond negatively and positively is good news though because it confirms you are a responder. Dr. C's experience will speed the process of now finding your optimal dose, but generally he will want you to stay at a specific dose for more time than you probably did in your testing process. Part of the problem is that some people respond very quickly to thiamine as in within hours while others need days, weeks and months to respond. It looks like you respond fairly quickly, so that is in your favor in terms of finding your optimum dose a little quicker than some! Most importantly though is that you now know you are on the right track to improvement of your symptoms as well as potentially slowing or halting disease progression and being in constant contact with Dr. C will only help you in that effort!
Thanks for your support- my italian friend arrives in 2 days and we'll contact the doctor then. Your message is very reassuring (re - responsiveness to B1) thank you
I wrote to Dr C who suggested 600mg per day for 20 days. Actually taking 500 as away from home and still need to get hold of 100 mg tablets - feeling ok on 500 mg.
Has anyone tried doing B1 pill stops? So perhaps increase the B1 in 200 mg increments for 10 days, and then stopping ingestion of B1 for 2-5 days to see if any significant positive effect is seen at any time period during this pill stop. It's a methodology that works for finding the optimal L-dopa dosage for those that use Mucuna, so perhaps it could be of value in finding the optimal B1 dosage as well.
So if no positive response is observed during the pill stop, you then increase the dosage again, and repeat the process until either a negative response occurs from an increase in B1, which would potentially indicate that the pill stop method doesn't work, or that you jumped over the needed dosage.
So for example lets say your optimal B1 dosage is 850 mg. You take 800 mg for 10 days, do a pill stop, and do not observe any benefit from doing so. Thus, you increase to 1000 mg. At 1000 mg, you begin experiencing negative side effects from the B1 because you have pushed past your therapeutic dosage need of 850 mg. If you can't make it the 10 days because of the severity of side effects of the excess B1, you could decrease it by 100 mg, observe effects, then go from there.
The best way I think to find out whether or not pill stops could work for B1 is to see how consistent blood levels are from concurrent administration of B1. Questions that need to be answered:
What are blood levels of B1 prior to starting B1 intake, i.e. baseline levels?
How many days of concurrent intake of a static dosage are needed for consistent and reliable systemic concentrations of B1 to stabilize? This would be the minimum amount of days needed to stay on a dosage before doing a pill stop.
After this, doing 2-3 tests every day during the pill stop days to see if the blood levels of B1 drop in a reliable and predictable fashion. If they do not, then pill stops probably will not work, but if they do, then it could be a tool that could assist in finding the individualized dosage need for every patient.
Just as people need varying levels of L-dopa to compensate for the dysfunction of the dopaminergic neurons, the same is likely true of Vitamin B1. It's essentially a relative nutritional deficiency of Vitamin B1.
"An absolute nutritional deficiency occurs when nutrient intake is not sufficient to meet the normal needs of the system, and a relative nutritional deficiency exists when nutrient intake and systemic levels of nutrients are normal, while a change occurs in the system that induces a nutrient intake requirement that cannot be supplied from diet alone." Source: ncbi.nlm.nih.gov/pubmed/226...
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