Today, 5/22/2018; all under control now after returning five days earlier to the original four grams daily of thiamin HCI.
Earlier:
Initial success was at 4g daily several months ago. Moved to 6g daily for two weeks trying to reduce tremor. Did not affect tremor. Failure was in fine motor control and constipation return. Moved to 2g daily finding improved motor control but still constipated. I returned to the dose 4 g daily. Now no constipation and suppressed Parkinson's symptoms.
Everyone must determine what dose works for them. Doctor Costantini, as appears in my observation and reading, chooses a standard therapeutic dose of 4g, just as he started me with. Others have found adjustments necessary.
Hi Roy, my feeling is that you should keep a stable dose of what works. Thiamine is not like L-dopa which works fast to provide dopamine and then runs out in a few hours. Thiamine is a molecule that is involved in the normal biochemistry certain cells (not only dopamine producing cells) and according to publications by Dr C helps to stimulate and revive cells damaged by chronic defficiency of thiamine, maybe for years. This is a process that takes time (maybe months) even when there is a new and ample supply of thiamine in the brain. I guess it's not easy to get thiamine into the brain (especially by ingestion) which is why the oral dose is high. The intramuscular dose is only 100 mg twice a week, so 4 g is 70 times the injected dose. Nearly all of this oral dose gets lost, metabolised or rejected by our bodies ( I haven't yet looked into this) and is surely variable for each person.
Only when the damaged cells become healthy again can they start producing dopamine, but this extra dopamine is naturally produced and is right where it is needed. My reasoning is that the actual dose of thiamine is less critical than the duration of the treatment so long as some of it gets to the brain and starts to revive cells. According to Dr C's publications, the less damaged cells will start to get healthy before the severely damaged ones and these may be in a certain part of the brain and related to a certain symptom. In my case it was very severe fatigue that just switched off 3 after weeks. One week later the stiffness eased considerably. I still have tremor, cramps and severe leg pain in the morning. I'm on 2.5 g, 1.5g before breakfast and 1g before lunch taken on an empty stomach.
"cramps and severe leg pain in the morning". I had such screaming pain/cramps in my leg, my neurologist said pain in the leg not caused by P but he did prescribe Potassium Gluconate 99g x4 twice a day.
I don't mean screaming cramps that last 2 minutes but seem like 30 but lower intensity cramps that stay around quite a while. I think it's Parkinsons, so I'll wait and see ....
Have you tried Magnesium? It is good for muscles and will help with the constipation. I think magnesium is to be taken with potassium but I am not sure, I have not researched it lately, and I don't remember off the top of my head.
We are going to add thiamine HCL to our regiment for 6 months ad see if it helps any.
Your description of Dr C’s publications correctly matches my personal experiences interms of symptoms. Thiamine has a short-term and long-term efficacies.
The non-motor symptoms subside before motor ones go away.Dystonia is one of those stubborn symptoms that will go away over time. It took 10 months to see the Thiamine’s efficacy on my dystonia.
Thanks for this input of your personal experience. I get the impression that some PwP get impatient when using Thiamine. 10 months is along time but it is useful to have a guide. Its mode of action on cells has nothing in common with L-dopa which is why both can be useful to treat Parkinsons. As thiamine progressively improves the health and function of dopamine-producing cells, then MAYBE L-dopa dosages can be reduced. Did you reduce your prescription meds ?
I started taking a very low dose of Sinemet (6.25/25 or 12.5/50 half a tablet) twice a day from JAN this year and planning to replace it with Mucuna P.
I am sure I can now deal without the Sinemet but haven’t tried yet.
A comment on your description of short-term vs long-term efficacy of thiamine. I see it as purely long-term in that the thiamine is involved in the long-term job of repairing damaged cells. However In Parkinsons, there is clearly a threshold effect. We dont feel the symptoms until the supply of natural dopamine (and maybe other molecules) falls below a certain level (threshold) and triggers neuro transmission problems. This could happen for some types of cell before others, hense the appearance of symptoms over time.
To reverse the process, we have to heal the cells and get the dopamine up over the threshold again. If indeed thiamine restores damaged cells then this should be relatively easy and apply to all symptoms. I suspect however that once the symptoms are triggered, there is a hysteresis effect working on the thresholds. Hysteresis is a very common phenomenon in chemistry and physics, and I don't know if this is proven in biochemistry, so I'm guessing here, but I think it is quite likely.
Hysteresis would mean that the TRIGGER threshold of natural dopamine when the symptoms start could be lower than the RECOVERY threshold when the symptoms go away. It's the resistance to changing from one state to another.
An example would be a trigger threshold of less than 40% natural dopamine production when the symptoms first start, but a recovery threshold of more than 60% natural dopamine production may be needed to make them go away. That's hysteresis and it could be a major problem in Parkinsons. Hense the need to have some external L-dopa to get over the upper threshold.
This could (and I'm only guessing here) also explain the need for long term thiamine therapy to push dopamine production up over the recovery threshold, but also imply a benefit of starting thiamine treatment as soon as the first symptoms appear when a lot of cells are still surviving even if some are damaged.
You are absolutely right.That’s why Thiamine shows its immediate positive effects if used at very stages of PD because simply less dopaminergic cells are “dead” or “hiberinated” ,,,,etc (or with any other PD related pathological defects) and less time needed to bring back the affected cells to a healthy condition as they were before the PD and the good thing is that every PD suffrer can benefit from Thiamine even at later stages but it will take MORE time for the damaged cells to be revived.Thiamine will do the job soon or later but it does. Of course IMHO.
I did my thesis on hyteresis in physics but I didn't expect to use it now. The lagging curves of the middle graph are exactly what I would expect. This could be important.
This is a perfect example of how hysteresis can lead to misinterpretation of the efficacy of therapy. It takes time and/or energy to induce a change of state. You must allow time for things to happen. In all our cases we had Parkinsons years before all the symptoms showed up. The reversal will also be true. Have faith !
This makes sense since dopamine acts by connecting to a nuclear receptor that switches on (or rather in this case "off" ) nerve messages that control muscles. The nuclear receptor then changes its conformation (shape) that operates the switch. This takes energy. The concentration of dopamine has to be above a given threshold to flip the switch and put the muscle tone to "rest" . To switch on the muscle the dopamins has to fall or be given the order to cut below a lower threshold. These two thresholds are not the same. If there is not enough dopamine to maintain the switch fully off, muscles are not fully at rest. That will cause cramps, tremors, fatigue, pain etc. Sounds familar ?
When I look back at many symptoms I had attributed to “other conditions” I can see clearly that it was PD inching it’s way “in”... that’s partly why I want to beat it down with intensity, making good “use” of my slag time. Some Honeymoon, eh? Ref: Honeymoon Phase, early PD
to decrease ldopa is not easily managed because the dopamergic cells to produce it have to do many steps say from ABCD up to Z. With the levodopa the steps are from X to Z, very easy for them so he explained me the doc C. Return to produce levodopa from zero it could require a very gradual scaling of L-dopa and maybe you can not completely reset it. I tried to reduce it but within a few days I had to put it back.
Thiamine can readily penetrate the brain barrier as a derivative in the form of sulbutiamine en.m.wikipedia.org/wiki/Sul.... The drug Arcalion has been used in Europe for the treatment of asthenia and fatigue. Human studies such as the one with MS patients ncbi.nlm.nih.gov/m/pubmed/2... showed promising results
I have added thiamine to my vitamin regime, but I need to know is do I take it all at once, or spread it out, e.g., breakfast and lunch? I've read that thiamine can interfere with other B vitamins. The one noticeable, and welcome, difference is that I am having regular bowel movement, something that I have not had in a long time.
I didn't know that thiamine will also alleviate tremors. This is good news! I'm learning.
hi roy you take 4 grams per day,,thats 4000 mg that means i need to take a lot of 100mg tablets per day, so im assuming you are taking a powder form or needle,is that correct.regards.
Roy, remember a few days ago when you were adjusting your thiamine levels and I said I was doing great? I concluded with the not broken don't fix it phrase. Well, I no sooner posted my comments when I started losing all, or more than all, of what benefits,. thiamine has given me. Now I am going through an adjustment. I am going to write Dr C and get his input. We should never say never.
I'm writing you because you have had a lot of experience with the thiamine experiment. I've been taking 4g daily in divided doses for about two and a half months. I don't notice any benefit as of yet. Would you suggest that I write Dr. C, and can you give me his email address. I know it's somewhere on the site, but I don't know how to find it. Do you think it's possible that symptom relief would kick in later, like 3-4 months time?
I am so thrilled to hear of your progress with Thiamin. Are you taking capsules or do you buy bulk powder and then mix it?
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I am going to write Dr Constantini today. Both my husband and my sister have PD (hers, advanced and debilitating, and his, fairly mild and manageable).I feel guilty adding their requests for help to the innumerable ones the Dr.receives but these responses to B1 are so amazing that I can't resist. My husband is plagued worry about an ever-worse future and my sister has lost all hope and simply tries to survive each day. Any improvement for either or both of them would be wonderful.
Thanks for sharing your experiences and efforts. You are so thoroughly and i have followed your posts consistently.
Hi Roy. My bro is in his 7th wk of B1 but only in the second week of it at 4 grams. He feels like it’s making him TOO jittery and he’s uncomfortable. ( he’s cut down to almost no coffee) I’m trying to get him to increase his movement exercises n cardio but he’s complaining how much it hurts him afterwards.
Dr C wrote me back-OMG I am Star Struck! Less than 14 hours turnaround time. He directed that I drop all other supplements and give THI one month, send video of face talking, walk and pull test then check back in one month. Since i am only 55Kg I am intending to build up to and hold the THI HCL to about 1500 mg (3 tablets) per day. I didn’t see him too concerned about my precise dosage this first month. He gave a “Tacid consent “ as we say in the military.
If I remember my physics one the classic models of hysteresis is the bimetal thermostat. Thermostats hunt to achieve their set temperature and they perform differently heating up and cooling down. There are many biological systems that behave like this
I had started 500mg and felt jittery. When I wrote to Dr. C and told him this, he said to take 250 mg (a very low dose compared to everyone else). After a month, I had no improvement other than energy level, so I switched back to 500 mg (still pretty low dose) and feel too jittery again. My weight is very low too I will admit. I am getting discouraged and don't know what to do next.
Has anyone tried the Benfotiamine natural source which is more bioavailable at lower doses instead of the stronger synthetic form? As it is fat soluble does it build up in the body ?
In the HDT FAQ page where Dr. Costantini has answered 58 frequently asked questions, his answer to question #41 answers your question regarding the use of Benfotiamine as a substitute for Thiamine.
41. Can I use Benfotiamine instead of thiamine hci and still get the same results as thiamine hci?
A : We don't use benfothiamine because previous trials report it does not enter in the neural cells, that's why it is not used for the diseases which don't affect the Central Nervous System (Bettendorff L.). We administer thiamine cloridrate intramuscularly or oral thiamine hci effectively.
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Is high dose thiamine therapy effective for people not taking levodopa?
Thiamine as per Dr. Constantini
New website to share information about high dose thiamine(B1) therapy: www.B14PD.com
