I hadn't had success with HDT when I used thiamine HCL. Recently there was a post describing the poster's success with thiamine mononitrate. I was encouraged to give this other form of thiamine a try. Starting October 4th I have done one 100mg sublingual tablet in the morning each day. It's been just over two weeks and things have gone from bad to worse. 'On time' from levodopa has decreased. I'm having much trouble walking. There have been no other supplements added during this time.
Does this sound familiar to those who have tried the HDT with this form of thiamine?
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Zardoz
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Please link to the evidence showing that Thiamine Mononitrate is toxic over time? I have never been able to find such evidence. Do you have the evidence?
Both Thiamine HCL and Thiamine Mononitrate(TM) do not easily cross the blood brain barrier (BBB). This is the reason for using a high dose to effect passive diffusion to increase the amount of thiamine that can potentially reach the brain. Both forms have a very good safety profile.
Dr. Costantini thought that the transport mechanism to deliver thiamine into the brain was some how perturbed and not allowing enough thiamine to reach the brain as he said that his patients prior to HDT treatment had normal levels of B1, but once they started on HDT, their thiamine levels were off the chart. His solution was to significantly increase the amount of thiamine in circulation to increase the amount of thiamine reaching the brain through passive diffusion.
In Daphne's case, she is taking the TM sublingually so in theory a very large portion of her dose is going directly into the blood thereby creating a similarly large amount of thiamine in the circulation since this method mainly avoids stomach loss as well as first pass loss and is considered to be safe. She has been taking it for about 4 years with no issues, as she has reported on this forum on multiple occasions.
“Thiamine mononitrate is synthetic and has the potential to illicit mild to severe allergic reactions.
The nitrates present in thiamine mononitrate may accumulate in the kidneys and induce kidney stones or cellular death. The University of Maryland Medical Center indicates that B vitamins are all required for optimal health of the liver, skin, eyes, hair and nervous system. Since thiamine is water-soluble, the body typically expels any excess to prevent most side effects. However, thiamine mononitrate is fat-soluble, meaning the body has more difficulty expelling any excess. Anyone with a pre-existing condition has the risk of retaining excess thiamine, which may cause potential side effects.”
First of all, the thiamine you have been taking for years is synthetic.
Here are some relevant quotes from the article that you linked to :
>>> ' Some foods and supplements contain synthetic vitamin B-1 or thiamine mononitrate, which may cause mild adverse reactions. '<<<
>>> ' Even though thiamine is generally safe, it may cause allergic reactions and mild side effects. ' <<<
>>> ' If you consume too much thiamine, the excess will be eliminated in urine. Therefore, whether you're getting vitamin B-1 from food or supplements, it's unlikely to cause any side effects unless you take extremely high doses. ' <<<
This is exactly what we have seen on this forum from high dose thiamine HCL over the past 4 years. What you are doing here with this article, Roy is making a case for why people should not take high dose thiamine HCL, but should take lower dose thiamine mononitrate.
Secondly, the thiamine mononitrate we were discussing is lower dose sublingual that Daphne has been using for 4 years with no problems from it, only benefit and minimal to no obvious progression over those 4 years. It mainly goes directly into circulation avoiding the stomach loss and first pass loss, so a much smaller dose is needed over oral thiamine HCL that you are taking. Also Lizzy9 has reported significantly better results for her husband using thiamine mononitrate after trying thiamine HCL.
Thirdly, Roy, you said this :
>>> ' The nitrates present in thiamine mononitrate may accumulate in the kidneys and induce kidney stones or cellular death. ' <<<
I did not find that quote in the article you linked to. Please include a link to that study that validates that statement. In order for that to happen it will take huge doses of TM, which again, Daphne and Lizzy9's husband are not taking!
I was (successfully) on B1 Hcl for about 18 months. Then, I developed weakness in my right leg (no torque on the right leg on the bike-the weaker side). That weakness devolved into a serious limp for about 8 months. Went to all kinds of specialists, had all kinds of tests. No one had an answer. I started doing a lot of lower body strength exercises and PT.
I read here (I think) of someone else who is on high-dose B1 therapy and was trouble walking, so I stopped taking B1. My walking is much, much better, but I won’t know how much of that is because I discontinued the B1 or the other things I’ve been doing. FWIW, I started B1 before I went on C/L. Now that I’m on it 3x/day, the symptoms that the B1 handled are gone, so maybe I don’t even need it at this point.
One of the steps to taking B1 successfully is to take regular mini vacations from it or to slightly reduce the dose in the 6 to 18 month range or both based on the information that Dr. Costantini left with this forum. Here is a link that describes how this works. Quite a few members have reported your same experience and this link explains why :
One of the benefits that some forum members have reported is that they were able to reduce their C/L dose once they started on B1. Dr. Costantini felt that the most effective treatment was using C/L and B1 together. Anything that has the potential to be C/L sparing may be very useful in the longer term because delaying and or reducing the need for C/L may allow longer use of C/L with less upward dose adjustments and this is important because one problem with upward C/L dose adjustments is that they can lead to dyskinesia and avoiding that issue is useful.
The other potential benefit is that with years of use and upward dose adjustments of C/L, you may get to a point where C/L begins to become less effective even with upward dose adjustments. Extending the useful effective range of C/L may not seem important now, but it may seem very important later.
I added to my reply to you, so you might want to reread it to have a better understanding of the role and importance of B1 over the longer term in PwP who respond to it, even though you are currently feeling fine.
Dr C's observations need to be taken with a large grain of salt, given the significant gap between the outcomes he observed and those observed outside of his practice.
Whenever you take any form of B1: injections, HCL, or sublingual, you need to stay observant of the possibility of too high a dose, shown either by jittery ness, unexplained anxiety or worsening of symptoms. With sublingual you will need to have days off to reduce the dosage as the tablets are difficult to halve, though you could try. After a break, which you’ve had, you could try again, taking one Monday, Wednesday, Friday and Sunday, for example and see if that gives you improvements with no problems. Mononitrate is no problem to the system as such as it passes through the skin into the bloodstream and not through the digestion. How much HCL were you taking and why did you change if you were seeing success?!
If things have gone from bad to worse, I would stop the B1 for a week or more then, when symptoms improve a bit, restart sublingual again at a lower dose by taking a tablet every other day or four days out of seven as I detailed. You don’t say how long you have been diagnosed or how bad your symptoms were, but 2 g of HCL is a higher dose than many find suits them. So if you want to try again, take a break. If your symptoms don’t revert to the pre B1 level, then it wasn’t an overdose of B1 causing them.
I have been on 1000mg b1. Last Friday I started on 1/2pill (25-100) c/l. 2 times a day, 8 hours apart. Should I continue the b1 or stop it and restart after they determine if I have Parkinson's?my nutritionist/pharmacis muscle testing showed 1- 500mg b1 twice a day. Should I take b1 at the same time as c/l? I have tremors tightness and weakness of right side, intermittent freezing episodes. Since I started the c/l I seem to have more episodes of freezing and some twitching, jittery. I'm not sure if it's because I am taking c/l,b1 or I am nervous about a diagnosis. Your thoughts
I would stop the B1 while you’re testing the ldopa. It’s good to take breaks in B1 anyway and you won’t lose any benefits you may have gained. I always say, trial one thing only at a time and now the time should be given to ldopa to clarify a diagnosis. It also appears to me that what you describe may well be B1 overdosing anyway, what ever The muscle testing suggested. If your symptoms improve during your break from B1 then you will know to go back after the break on a lower B1 dosage. I hope this all makes sense! Good luck
I don't know how long it will take to determine if I have Parkinson's..I'm to call my neurologist on Tuesday to determine a diagnosis or change in doses. I guess it could be several weeks. If I understand you correctly I should cut the b1but for how long? Could freezing episodes jittery and cramping and twitching be due to b1 overdose?
Most definitely, the symptoms you describe are typical of B1 overdose. Don’t worry this is temporary and you will get over them in a few days of no B1. You can take a break for a month or two and not lose any benefits B1 has given you, so don’t worry about taking a break. When you resume restart at a lower dose.
Try adding nuts to diet. Pistachios and walnuts especially. Make sure your diet is organic, mostly vegies and fruits and berries. Meats can mess with dopamine supplements. Make sure you exercise and stretch several times a day for 15 minutes or more. Check out Laurie Mischleys book Natural Therapies for Parkinsons
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