I just watched some old youtube videos of Dr. Costantini's patients before and after treatment with B-1 injections. The difference was quite impressive after only a short time. My husband has been on Vitacost B-1, 1 gram for about a year. He is not getting the kind of results that these Italian patients have gotten. Is there any place to get injections here in U.S.?
B-1 injections: I just watched some old... - Cure Parkinson's
B-1 injections
Therapeutic level is 4g daily
Does your husband get any discernible benefit from his current dose (1 gram/day) of B-1?
Art
Yes, it immediately corrected constipation problem, but it's hard to tell if it is helping in other ways. He is embarrassed that he still drools. His right arm does not swing. I've been doing the pull-test on him periodically, and he only takes one step back. Getting just the right dose is something we are still working on. He is a small man, 5'7" and weighs 137 lbs. At one point, when he increased his dose to 1.5 grams, he thought he felt clumsy when walking. After watching the youtube videos of Dr. Costantini's patients, he was so impressed with the clear improvements that they got from the injections. As of yesterday, he did increase his dose to 2 grams to see if it would help. He would like to see the positive results that those Italians patients have gotten, but he has to be careful that he doesn't take too much for his size.
Lookingforhealing,
You say he felt clumsy when walking when he started taking 1,500 mg per day. Dr. Costantini has said that the correct B-1 dose will not cause any worsening of symptoms.
Is it possible that his correct dose is between 1,000 mg/day and 1,400mg/day?
In any case, please keep us updated on how he does at 2 grams/day.
Thank you!
Art
Thank you for taking time to respond. We will keep an eye out on how the 2 grams does. It does seem odd that 1500 mg. made him feel clumsy, yet he decided to take 2000 as of yesterday. He just wants to see improvement so badly, especially after seeing Dr. C's patients' before and after videos.
I understand.
Well, it will be interesting to see how he reacts at 2,000 mg / day.
If you take what Dr. Costantini said literally, it seems like 1,500 mg / day was too much because the clumsy feeling sounds like a worsening of symptoms. Was his push test worsened at 1,500 mg / day?
Art
To be honest, I didn't think to do the pull test when he was feeling clumsy. Next time he reports any worsening symptoms, I will need to do the pull test.
Yes, for fine tuning of Dose, Dr. C was looking for a very good push test in conjunction with a good improvement in symptoms. Your husband's push test sounds like it is good, but a partial step back would be better! Based on what Dr. C has previously said, the one gram dose sounds like it is definitely not too high. Once you and your husband complete your test of 2 grams, you may have a better idea on dose direction. Please take meticulous notes during this testing period and longer videos may be useful also for comparison. If you took original videos at the start, as Dr. C always insists upon when starting B-1, it wouldn't hurt to compare those videos to his current state. Sometimes when improvements happen over months, they are not readily apparent as they would be when they occur over a week or so and this is one good reason to keep building your video library with at least one per month. The longer each video is, the easier it will be to identify any changes over time.
Art
Thank you for your guidance and reminder to take videos. We were particularly impressed with Dr. C's patient, Silvana, 67 years old, initially diagnosed in 2006. In the video she seemed to display no signs of Parkinson's as her facial expression was animated as she spoke. The video showed her walking normally as she blew a kiss and another showed her dancing. That's the kind of healing that my husband wants and we will continue to tweak the dose until it is right.
Well, Silvana looks like she loves to be in front of the camera! 😁😁😁
Art
Art, I do not think so about Silvana , as far as all the Italian patients are followed by neurologists who have applied the usual L-dopa-based therapies since before using HDT. Ldopa has always been considered synergistic at b1 by dr C for obvious reasons. Given in the PD we are in the presence of a lesion of the brain tissue responsible for the synthesis of dopamine, the surviving cells are unable to produce the dopamine necessary for the body by themselves. The response to b1 is also proportional to the size of the lesion as it is an aid to cells surviving Parkinson's disease.
IMHO The question is: does B1 have a neuroprotective effect?
Only time will give us the answer.
Hi, Gio!
The comment about Sylvana, "was tongue in cheek" as she smiled a lot during the filming of the video, so I meant to highlight that aspect, not to detract from Sylvana's particular situation.
That aspect of thiamine is already known from other disease states like Wernicke's encephalopathy. A deficiency of thiamine in the brain causes neuroinflammation and then neurodegeneration as a result of the inflammation. Eliminating the deficiency reduces the neuroinflammation and consequently the neurodegeneration.
en.wikipedia.org/wiki/Werni...
Art
The only difference between taking thiamine orally or administering thiamine via IV is the speed with which the thiamine reaches the blood. I do not think a YouTube video is a good basis for interpreting how effective high dose thiamine is. More than likely the results seen in the video were a placebo effect which is very common in Parkinson's patients.
Far more important is the fact that dozens of people on this forum have now been taking thiamine for more than a year and a large percentage continue to report some benefits so forum members here have additional evidence that high dose oral thiamine may be helpful in slowing the progression of Parkinson's. It is equally clear that high doses of thiamine can not meaningfully reverse any symptoms for a sustained length of time.
Finally the percentage of the population that is allergic to thiamine is tiny so any perceived reaction such as "increased clumsiness" , "sudden jitteriness" or whatever else folks report here is not due to thiamine but rather a placebo effect. High dose thiamine doesn't cause ANY reaction in humans unless they have an allergy which again is rare. Human testing shows that people can take 8 g per day or more for weeks and see no effects. Taking 2 g per day for an adult of 137 pounds is WAY less than "too much." If anything based on the experience of folks on this forum it is too little.
Bottom line: Changing from 1.5 to 2 g per day is almost meaningless and any perceived change is more than likely a placebo effect and not a true reaction to the thiamine, and taking thiamine by IV versus taking it by oral route will not make any difference over time.
Here are 2 papers that contain research backing up what I am saying:
Oral or intravenous thiamine in the emergency department -
Pharmacokinetics of high-dose oral thiamine hydrochloride in healthy subjects
Even 5mg change in the dose of Thiamine is meaningful at a certain stage. . Not backed up by meaningless for our case papers , but just almost 20 months dose experiments. At the beginning, I was guided by Dr C till he was able to...
I'm 5'10" and 160. I started with 2g a day (1 in the morning, 1 afternoon). I one month it removed all the non-motor symptoms (constipation, drooling, urinary urgency, foggy mind, balance issues, anxiety, depression, insomnia etc) and maybe just a little from tremor. After 1 year I dropped to 1g/day taken in the morning.