I just received an email from Dr Constantini after just one day. He is recommending 1 gram per day to start and wants me to contact him with progress and videos in 2 weeks after starting. I have a bad upper respiratory cold now and will start once I feel better. I’ll keep you posted.
Carol
Carol,
I see that you were diagnosed in February and have been posting and reading here since that time, and are currently taking Selegline. Can you provide some more information so perhaps the folks here can help. How old are you? What is your level of health in general? What support do you have? Are you trying any other supplements besides thiamine?
For what it's worth there is no reason to delay taking thiamine because you are sick. Thiamine will not make you worse and might even help if your body is deficient.
Joe
Thanks Joe. I am 69 and retired from my career as a psychologist 2 years ago. I was diagnosed with afib right after retiring and also have asthma and acid reflux. Otherwise I have always considered myself healthy. I have walked for exercise all my life and about 2 years ago it became awkward and slow. I have sciatica and some back issues and leg pain which I thought were causing the walking problem but 2 epidurals did nothing. The carbidopa/levodopa helped my leg pain. I only take a half pill due to nausea. I’m also on Selegiline. I take vitamin D 5000 and Magnesium 150. The worst thing is not my arm tremor, it’s the walking issue. I try walking with a grocery cart at stores or using a walking pole but am still slow.
I take Trimethobenzamide to prevent nausea caused by the Senemet. It helps a lot.
I was lucky. Had one epidural and resulted in freedom from pain these last two years.
What has been your experience with B1?
I take only 100 mg after trying the 1000 mg Dr Costantini recommended for me. Moved down to 500 and then to 100. At this level my balance improved, smell improved and writing improved. I increased it to 200 mg last week because my balance seemed to get worse but all of my joints started to hurt so I backed off. I’m not sure if the B1 was responsible but after 4 days off it is better. My balance is still not as good as it has been since since I started B1 in February. I may try again. I’m glad the injections worked for you. My pain actually got better when I started c/l. Someone on this site reported that experience. I had been resistant but decided to try it. Any ideas are greatly appreciated.
It is possible that the 100 mg dose is still a bit high and in such situations Dr. Costantini would also use the "push test" to try and zero in on the optimal dose. Once he saw a good push test response and good symptom control, he considered the dose to be optimized.
Generally, if he felt the dose was a bit high, he would have the patient stop for 3 days to a week. It may be useful to take notes from the moment you stop taking B-1. If you feel that your balance or symptoms improve during the off time from B-1, he would take that as confirmation that the dose was high and would have the patient either use a lower daily dose when they restart B-1 or he would have them restart at the same dose and then just have his patient skip one or two days of B-1 per week. Here is a link to the HDT/B-1 FAQ page. You will have to scroll down to Q&A # 35 and Q&A # 48.
healthunlocked.com/parkinso...
Please keep us posted on how you do with B-1 because your information may be helpful for other members who are trying to fine tune their dose.
Art
Art, I had such a good response to 100 mg of B1 for 7-8 months I think I will go back to that and see what happens. If my balance does not return to the former level I will try decreasing it. I was traveling 2 weeks ago and that tends to exacerbate all of my PD symptoms. The balance problem could be related. It usually takes a week at home to feel right. Thanks for your help.
Yes, at 7 ~ 8 months in and the dose is possibly a bit high causing old symptoms (balance) to reappear which Dr. Costantini felt that indicated a slight dose reduction might be needed such as skipping a day or two per week. This is pretty much what members are reporting at 7 to 18 months in with a return of old symptoms which Dr. C felt the dose could now be slightly high due to possible cellular repair and and a subsequent need for slightly less B-1.
Art
Okay. That makes sense. I’ll try skipping 2 days a week. Thanks for explaining this. Carol
When you are reducing your dose, even if just skipping one day a week, Dr. C's preference was for you to stop B-1 for at least three days to get your B-1 level moving downward.
Art
Yes. I have stopped it for about 5 days. I'll let you know how it goes. I thought I had found the right dose but I wasn't aware that it could change so that you would need less. Thanks and I have started the prunes for osteoporosis too. Wish me luck. Also taking calcium now as directed by my dr. Just the amount I need to add to calcium already in my diet.
Sounds good on all fronts! Yes, calcium supplementing in lower doses is more like what the body can handle well as opposed to mega doses as some calcium supplements are just too much for the body to handle well. A little K-2, magnesium in a bioavailable form and boron are all useful as is vitamin D in trying to handle calcium optimally in the body and bones.
Art
Goldencbc,
Yes, it may serve you well to wait til you are over the cold, as for some people, a cold or flu can cause a change in PD symptoms that can just add confusion when starting HDT. I am glad that you have already contacted Dr. Costantini! Good luck and I look forward to your updates!
Art
Thanks Art. I’ll share the progress.
B1 - a little confused 
B1 — starting with 100 mg 
B1 Survey - wow, B1 wins big time.
B1 overdose at 0.5g ? 
Does B1 make you tired?
