Today, Ahmed joined our blessed group. He brings the group member count to 3,900. I’m looking toward four thousand members within three weeks. I encourage you, Copy and paste across the internet:
"Parkinson's disease"
Vitamin B1 use instructions :
Join my Facebook group Parkinson’s thiamine hcl
Thanks, Roy for all you do to spread the word about High Dose Thiamine. It has been a game-changer for us!
Hubby is 8 years post-diagnosis and still going strong, with only a slight increase in c/l. And yes, exercise is good medicine, too!
Hi Kattripp,
I have a question for you. I have you down as being one of a group of forum members who have reported that adding B1 to your husbands regimen either reduced or eliminated his tremor. Is this still the case and can you add any information on that point if so?
Thank you!
Art
HDT 2 grams total per day (divided dose) has greatly reduced his tremors and often he is tremor-free for hours.
He has stayed on the same dose for the past 2+years, with no change in dose.
Tremor increases just before next dose of c/l is due. He takes c/l 25/100 one tab twice a day and c/l 50/200 once a day.
He is also on Amantadine 100 mg twice a day (Bionpharma manufacturer only due to no side effects for him with this formulation. It boosts the effect of levodopa and helps with rigidity greatly.)
Not surprisingly, tremors increased with his first dose of Pfizer Covid 19 vaccine for a few days, along with other mild symptoms. We take this as a good sign that his immune system is responding!
If you have any other questions, please ask. Be well!
Hello, may I ask, how do you get HDT 2 grams? Is it in pill form I assume? How many pills does that equate to a day? I appreciate your taking the time to share your info. I’m new here and am researching a ton but have so much to learn.
Cclemonade, we use Vitacost Thiamine HCL Vitamin B1 500 mg per capsule. It is available on:
vitacost.com
Be sure it’s “HCL” as recommended by Dr Costantini.
Ken takes two 500 mg capsules= 1 gm
at 8 am and two 500 mg capsules= 1gm at 1:30pm for a total of 2 gm per day.
The capsules are easy to swallow and cost $0.1 each so a bottle of 300 capsules costs about $30.
You have lots of time to learn... and so much research is on-going, which is good!
We are hopeful that new treatments will become available.
Until then, take good care of yourself!
Katripp, are you sure it’s not the Amantadine reducing his tremors? I was on it for over 2 years (with HDT). Amantadine eventually was not effective, and tremors returned and much worse than prior as my MDS advised it would. For me HDT was not effective reducing tremors. Dr C even advised me that it would not reduce tremors years ago. If it is that’s great!!
Dr. C told me that the best tremor responses he had seen were in his patients who used B1 in conjunction with a levodopa product and he further said that he would like all of his B1 patients to use levodopa also. He also said that he felt that non-Italians had a fear of using too much levodopa. He said many of his email patients were using relatively low levels of levodopa compared to what he was used to and he would sometimes try to get them to increase their dose to see if it would illicit a better response. He said tremor was one of the hardest and last symptoms to improve from the addition of B1.
I think the count for forum members that I saw post about tremor improvement is around 32, but most no longer post or don't post very often. I wrote their forum names down as I saw their posts, so I have no idea if those results were lasting or transient. Some are still here and post occasionally, such as Cons10.
Art
Art, I communicated with Dr C quite often and he told me similar. However he did tell me not to expect tremor relief without c/l.
For the past 3 1/2 years I’ve been on rasagiline and Amantadine. Last 6 months C/L only with HDT. For me HDT does not help with tremors at all. And different HDT dosage tried as well. I really should rephrase the question.. who is taking c/l and HDT and noticed a considerable difference from just taking C/L?
Yes, I understand that some have reported no benefit in terms of tremor reduction who are using B1. That is what prompted me to write down the names of forum members who reported tremor reduction in the hope of possibly seeing some type of pattern or difference in application of B1 or a little follow up at a minimum. If we saw it here on the forum, Dr. C had to be seeing the same in his many other patients and I'm sure he would have liked to know the reason for this discrepancy also.
Kattripp pointed out that her husband saw the benefit gradually over a 3 week period or so. Another poster said that he saw tremor benefit over a 6 week period. Perhaps it has something to do with just how advanced the underlying disease is or how much damage has been done to the DA neurons? Just another reason that a HDM study is sorely needed to try and understand these differences.
It seems like only dopamine in the SNpc is going to make such fast motor deficit improvements and perhaps that theory that there can be some neurons that have gone into something along the lines of hibernation has some merit, but if that is true, how does B1 entice these neurons out of hibernation and back into production of dopamine? Or is the B1 ameliorating what ever caused the neurons to go into hibernation. Is this potential hibernation a survival mechanism?
If I understood Cons10 correctly, the B1 reduced tremor and meditation reduced it further. but it has been awhile and I may not have that exactly correct.
So many questions and so few answers.
Art
ParlePark, you are right in that Amantadine does appear to have some mild synergistic effect with C/L but may not be enough for adequate dopamine replacement.
It is mainly used to treat dyskinesia but it actually stopped the muscle rigidity in his back, which is why he remains on it.
C/L is the critical key to replacing dopamine in the brain. HDT and Amantadine are complementary.
Tremors are the last symptom to respond to HDT and everyone with PD has their own response to the meds and the disease itself.
I think Ken was fortunate to respond well (increased glucose metabolism in the brain due to the HDT?).
He uses the treadmill 5 days a week for an hour (watching video’s).
The forced pace of the treadmill works better than walking outside for him.
Wishing you well! Always good to hear about others experiences!
Thank you very much for the update on your husbands tremor reduction from B1! I think I made that note about you back when I was still known as "easilly" on the forum, so that was sometime ago. You and about 30 other forum members have reported reduced or eliminated tremor with the addition of HDT/B1 to your husbands existing regimen. Many of those members no longer post or rarely post, so when I saw your post, I just had to ask.
One more question. Did the tremor reduction begin at the initiation of B1 or did it come on gradually with regular B1 usage?
Thank You!
Art
Tremor reduction was gradual, over a few weeks, when we realized his arm swing returned, voice was louder, tremors reduced or ceased for hours; his hand-writing improved and he felt better. Still had other PD symptoms but less bothersome.
He is reminding me that it’s been well over 3 years now!
Really wish there were clinical trials but no drug company will do research on a supplement that costs a penny a capsule.
He had his first dose of Pfizer Covid-19 vaccine, which increased tremors for a few days but still mild; we take this as a good sign that his immune system is responding as it should.
Be well!
I was prescribed Amantadine for tremors only years prior to being prescribed C/L. I am aware that Amantadine is also used for dyskinesia. I’m curious as I have been on HDT for 4 years with no benefit of tremor. I have no doubt that HDT is beneficial to many with symptom relief. however I have my doubt of its effectiveness re: tremors. In most cases I think C/L will stop tremors with or without HDT.
It was common for Dr. C to mention that many of his patients who were already on C/L , were able to reduce their dose of C/L once they added B-1. Perhaps B1 has an effect on the efficiency of C/L, allowing dopamine to be produced more effectively in the brain. It is easy to forget some of these things that he said, so bringing them up every so often seems like a good thing.
Art
Wish that was the case with me, but it’s not. I still take HDT but really don’t know if it’s a benefit. All in all tremors being what they are, I’m dealing with other symptoms somewhat optimistically, sometimes, most of the time but really depends on the day, hour,etc.
Well, some people don't respond to B1 and perhaps that is the case with you. If you stop and see no change, it doesn't seem to be worth continuing to take it. You could try something else that might help.
Art
Chartist, Dr C also recommended taking a pause from HDT treatment, than resuming at a lower dose (such as 500 mg daily) if symptoms, such as tremors increase.
Think it’s a good idea for most to try that but can’t convince hubby to take a break as it still is working.
Wishing you well!
Yes, I wrote about that awhile back because some forum members were running into this issue after being on HDT for 6 to 18 months and they initially thought that HDT was failing them and the disease was advancing rapidly. It just required a little time off or a very slight dose reduction in some. Here is what I wrote about it :
healthunlocked.com/parkinso...
Dr. Costantini shared a significant amount of information with this forum and I tried to archive most of it here as he gave it to us:
healthunlocked.com/parkinso...
Art
Parkinson’s 
Parkinson’s 
Parkinson’s 
Movement specialist
