(Note, I do not read or write English, I send you translation)
Hi, I'm new, hello
Try oral vitamin B1 and it was not possible to adjust dose. start injectable B1. Favor dosing suggestions and report possible symptoms at the beginning of treatment.
Thank you
Amethyst
The dosing suggestion from Dr. Constantini is 100 mg per 1 mL, twice a week.
I don't feel a benefit, but I take one injection every 5 or 6 days.
There's no way to know what your response might be. Many people experience a benefit and many don't. You'll just have to try it.
Try putting B-1 or thiamine in the search window because there's a lot of content about it that you can read through.
When you were trying to find the correct dose orally, did you go back and start with a very low dose such as a few hundred milligrams?
Thank you
Marc,
How are doing on injectable B1? My husband went from 100mg a week to 200mg (latest change). Don't see any dramatic improvements. I only noticed that his voice is affected, sounds like he has a cold. I think, he will go back to 100mg again.
As I recall, you had a compounding pharmacy make the injectable stuff for your husband, right, so he's going from 100 mg to 200 mg injectable? Double the dose recommended by Dr. C?
I don't notice any benefit from injecting B-1 and, in fact, I don't notice any benefit from anything I do, but I am progressing slowly which I attribute to the sum total of everything I do -- mixed in with some plain, dumb luck. (I am exercising 2 hours a day now and I believe that matters.)
I did see my neurologist at the VA last week and for the 2nd time he said I was doing better than the previous visit, which was 6 months prior, at which time he said the same thing -- so something's working. (Should I say that out loud? I don't want to jinx it.)
Marc
PS. I do notice a benefit from one thing I do. Nilotinib has mostly relieved my constipation.
Whoops. I see. He is just going from one injection of 100 mg per week to 2 injections.
Hi Marc,
He has changed the B1 dose so many times trying to find the "magic" one. Anyway, until today, he was on 200mg (100mg X 2 /week). He will take a break for a week or so and start again at 50mg X 2 /week, total 100mg a week. I have to confess that after his initial injection which he believed it made him "normal" again, no major improvements. However, I believe there are cumulative improvements which we don't notice every day. Even his MDS at Vanderbilt was pleasantly surprised when he did the pull test. My husband took only one step backwards, so it could be the cumulative effect of B1.
Like you, he is taking quite a few supplements and we are not sure what is the most beneficial for him. Anyway, Dr. Mischley wants him to have a PD panel test and based on the results, she will recommend the supplements he needs. He will also have (soon I hope) a hair test that she wants all her patients to have. His symptoms are mild, mainly tremors, (no balance issues, no dystonia, no cramping, no constipation) but not frequent and they seem to be doing a lot better since he started Azilect and 1 1/2 Sinemet pills (1 in the morning with Azilect and 1/2 at night before bed. His mid-day dose is MP with half a carbidopa (12.5 mg) which his Vanderbilt MDS prescribed. I love this MDS because he is for natural L-dopa. We told him we like MP and he asked us if we use broad beans or velvet beans. I was shocked to hear him saying that. Then he said that since we like natural L-dopa 1/2 carbidopa will help with the absorption. We asked him for the brand Azilect and Lodosyn and he prescribed them, only co-pay is more than $1,000 for Lodosyn and about $200 for Azilect, both I think for 30 days. Don't know if military pharmacies will fill out these brand prescriptions, need to ask them.
I believe his main problem is hypothyroidism. He had total thyroidectomy and doctors have problems finding the right compounding T4/T3. He complains about weak knees and aches, that is his biggest problem. He can't stand in one place too long, but he can walk 3 miles easily.
Outrageous co-pays. All things considered, sounds like he is doing pretty well. Even if the B-1 doesn't provide relief, it may be slowing the progression. I need to get on Mischley's schedule.
I have some questions:
I understand that Dr. C's prescription is 100mg, 1ml injection, but I have only got vitamin B1 100mg 10ml. Will it have the same effect?
I applied myself; last week one Tuesday and saturday and one Tuesday. Results: a little difficult to walk well and some stiffness especially last night after the plication of the injection.
My medical prescription is: 1/2 Madopar tablet 3 times a day. 2 tablets of amantadine and 1 + 1/3 patch of Rigotine of 6 mg every 24 hours.
Please, tell me what supplements you take.
Thank you
For starters: COQ1O, OMEGA 3 OR FISH OIL, TURMERIC, GLUTATHIONE. All these are Dr. Mischley's suggestion.
For B1 injections, we followed Dr. Costantini's advice until he had his health problem. I don't quite understand your B1 dose. We started with 100mg x 2 a week and trialed different doses. Everyone responds differently to B1, it's not one size fits all. A lot of people take a lot lower oral B1 dose and have fantastic results.
Hi Marc,
I've written before and I'm sorry to bother you again. We are in France tight now ( doing a home exchange). I believe I can offer injectable B1 here in small doses ( unlike USA where compounding pharmacies only prepare larger "batches".
What size syringe are you using.
Thanks..and I hope your summer is going OK. Heat wave on East coast and a heatwave here but the humidity is low and the food is fabulous.
Merci et bonne journée !
Barbara
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