Sounds like things are very difficult. Are you taking any meds?
I’m not a particular believer in the B1 but it seems to be working for many in this forum. I suggest you just buy some and start getting them in slowly building up your dose. I think people are taking up to 1000mgs a day, and I’m sure someone else will give you the contact info for DrC who will help you.
I take C/L, Selegeline, probiotic, turmeric, NAC, multivitamin, calcium with magnesium and fish oil
moparkie715,
As regards the use of B-1 / Thiamine, the last time I counted, there are over 50 people on this forum who are at various stages of testing it who have reported results that range from zero to 90/95% improvement of symptoms. It seems that the people who have done the best overall are those who have stayed in contact with Dr. Costantini via email or direct visits to his medical office in Viterbo, Italy. It also seems that the people who have done the worst, chose to go it alone without guidance from Dr. Costantini. This is just a generalization based on what has been posted on this forum.
Below is a link that will take you to a post that contains almost all of the information that the members on this forum have discussed about B-1 usage and testing, but for individual specific questions, it may be best to contact Dr. Costantini directly via email to make sure that you are getting the best and most current information regarding Dr. Costantini's B-1 Protocol. The link below also contains a link in it that will take you to a very comprehensive page of frequently asked questions about this protocol as well as a page where actual B-1 users discuss their results. I try to keep the information updated regularly and if you select to follow any of the pages, you will be notified whenever they are updated.
It won't hurt to email Dr. Costantini a quick note to ask him. Just be as clear as possible about describing what the problem is. You are not alone with this issue of symptoms worsening within the first two weeks, it is quite common and that is why it is discussed on the "thiamine FAQ page because it happens so frequently. Look at Q&A #49 & 50. All answers are directly from Dr. Costantini.
It may be helpful to bookmark this page in some way. As an alternative you can find it by clicking on my icon and select it from my list of posts. I only have 14 posts so it will be easy to find any of the thiamine / B-1 / Dr. Costantini related posts that I have put up. If you select to follow any of those posts, you will get a notification whenever they are updated. If you select to follow me you will be notified whenever I post.
I think i have made a big mistake the last 2 weeks on my thiamineHCL treatment. Dr. C Never said to stop taking my supplements so I have continued to take them (fish oil, probiotic, turmeric, multivitamin).
I have emailed him bbut I have not heard back yet.
My question is was i supposed to stop taking all supplementset, or just the multivitamin or does it really matter?
If you told him everything you are taking and he did not ask you to stop taking anything, he must have not thought it would be a problem. If you didn't tell him everything you were taking, you should contact him and ask.
Generally, he prefers to have patients stop supplements at least for the test period while you are searching for your optimal dose and then once the correct dose is found, you can, if you choose to, start reintroducing those supplements slowly one at a time.
You definitely should try mannitol. It is supposed to dissolve alpha synuclein clumps that could be (and probably is) the cause of the progression of your symptoms.
Go to CliniCrowd, answer to their UPDRS questionnaire, and you will have access to the recommended dose of daily mannitol for you (it's weight dependent, I take 9g for 69 kg). The site is free and the cure works... at least on paper, in test tubes, on fruitflyes and mice.
XENOS, Thanks, i have gone to CliniiCrowd and it suggested i take 6 grams. Do i just ordr off of Amazon? and take 2 teaspoons w coffee i n the morning? . do i have to increase the dose over time?
Yes definitely start with a low amount - perhaps half a teaspoon. I have mine in a coffee with coconut oil - that's breakfast. Then build it up - but if you find yourself getting too gassy/loose it is too much. And keep exercising as much as you can - I think 45 mins cardio is the sweet spot. Otherwise B1 might help you.
If you read the link I posted previously, further up in this thread, you will see that Dr. Costantini prefers that you not start other supplements during the crucial time that the two of you are trying to determine your optimal dose of thiamine. Once your correct dose is well established, then you can add in other supplements like mannitol or magnesium. The reason for not starting other supplements during this B-1 testing phase is so that he will have a clear and unobstructed view of how you are responding to each dose of thiamine. This helps him determine exactly when your dose is optimized in the absolute shortest time possible. As outlined in that link also, you will see that there can be many ups and downs in your symptoms during this testing period and the folks who do not stay in touch with Dr. Costantini and fail to get his guidance, often think that a worsening of symptoms during this time means that B-1 does not work for them and once you read that link, you will realize that that it is an incorrect assumption. Although it is a simple protocol, finding the correct dose has been anything , but simple. Read so that you will be well prepared. Success favors the well prepared and success is what you want!
Art, when I first contacted Dr. C. I had listed all meds, vitamins and supplements my husband was/is taking. He never suggested for him to stop all vitamins and supplements that the Functional Medicine doctor had prescribed. On follow up emails, I had also included the vitamins my husband continued to take and at no time did he suggest to stop the protocol he was on.
This is answered on the FAQ page with a good explanation of why. When starting out, his preference is that you not start other supplements at the same time or shortly after, but at the same time he realizes that people who are taking a list of supplements are likely very attached to doing so and so I think in those cases, rather than insist that they temporarily suspend those supplements, he will go ahead with the B-1 and see how it does. The thing with too many supplements, it makes it harder for him to know what is causing what and it can make it harder to figure out the dose.
Look at #7 and #33 on the thiamine FAQ page. Everyone who is using or thinking about using thiamine / B-1 should bookmark this page for easy reference because even if you already have found your ideal dose, there are still questions that come up that can be answered by that FAQ page!!! By bookmarking this page, you will allow Dr. Costantini more time to answer case specific questions in a timely manner. This would be a thoughful thing for us to do!
As an alternative, you can click on my icon. I only have 14 posts, so it will be easy to find any post that I originated such as the FAQ page, the who is taking thiamine page or the thiamine primer page.
Art, thank you. I am about to contact him again, and I will ask him if he would recommend to stop all vitamins and supplements. Something isn't right yet. . .
Get in touch with Dr C. High dose thiamine is going to help with all that. My right leg is not freezing or dragging and cramping anymore after a month of 4 grams a day.
I’m seeing better days ahead much less dyskinesia almost non existent bradykinesia or cramping and all thanks to Dr C and his team including everyone here. Love you all 😊
Just reading your post from 8 months ago and wondering how you’re going. My husband has Parkinson’s but a member in our support group has just been diagnosed as having Atypical Parkinson’s as well. I would love to tell him about the B1, especially if you have had success with it. Hope you are going well!! Jenny
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