Have you gone through the testing process of finding your correct dose of B1? The effective dose range reported on this forum is 25 mg/day ~ 4000 mg/day. You have to find out at what dose you start to react to B1. Have you found benefit from B1 at any dose? Are you taking C/L?
Four months TRACKING improvementFIRST STEP: a UPDRS test, a push test with video, a walking and turning test with video, a talking test with video and possibly a writing test, standing from seated on hard back chair video with your arms crossed. These videos are kept on file to be used for comparison with future videos every 30 days. This is a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time.
You don't say what dose levels you have tried, but if you have not found benefit at any dose up to 4000 mg, some people do not respond to B1 and it is possible that you are a non responder.
That leaves another 2000 mg untested. I would try the full range before throwing in the towel on B1. Dr. Costantini said that the right dose will improve the pull test and improve symptoms while a dose that is too low will do nothing.
Thiamine HCL or b1 is not stored in quantity in the body and lasts for a very short time (a few hours). It is an co-enzyme that helps to burn nourishment and thus energize the cells, it is not the nourishment itself. Therefore it needs that the person is well nourished and has all the other substances available for its functioning, the most important of which are magnesium and calcium but also the other minerals, normally we are all well nourished but it must be said.
It works well at 1000mg but also at 500mg and it would be preferable to distribute them throughout the day in 3/4 times.
There is a practical test (that I never write bere) that you can do and repeat several times to confirm that it will give you the certainty of thiamine gains and it is this: When the ldopa ends its effect, after about 3 hours, and the symptoms worsen a little; at this point, try to take 100 / 200mg of thiamine and see if within the next 30 minutes, there is a slight but observable temporary improvement in motor symptoms, this before the next dose of LDOPA takes effect. If you do not use Ldopa you can try it as soon as you feel a little contracted, if even slightly better it is probably thiamine.
I am new so might ask a dumb question. I heard a lecture from UF Parkinson's research team in 2018 that Levadopa needs to be taken with Carvidopa (sp?) or whatever it is called, in order to work. Did you take both or do they combine both now into one tablet?
I advise you not to do this test on the first dose in the morning as you would be very deficient in ldopa and not to use benfothiamine as I am not sure if it work fast, use thiamine mononitrate or simple thiamine hcl.
Could L-tyrosine and Citicoline help him by increasing dopamine since CL doesn’t work for him? Would Benfothiamine (fat soluble) potentially be better? And Art, my brain is functioning a bit better! I’m only 46. I’m not like my previous self but definitely improved making QOL and researching much better! You have helped encourage me to research deeply and relentlessly and that I can make a difference, I can improve!
If you are referring to Jay, it would be good to finish testing B-1, because if he is a responder, the benefit can be very significant, based on what other responders to B1 have found in terms of benefit. L- Tyrosine and Citicoline are certainly worth testing, but B1 should be the current focus since he has already started testing it. One at a time is a useful approach so that you are able to determine what is doing what.
Art
Basic (B) - (1) 1nstructions. B1 in the form of thiamine hcl is required for HDT (high dose thiamine) therapy.
Regarding thiamine hcl, it is not a cure. It is at its best supporting carbidopa levodopa. Solgar tablets are choke hazard. Find capsules as they are easy swallow.
Doctor Costantini directed:
Early or mild symptoms - 2 grams daily.
Moderate symptoms - 4 grams daily.
Severe symptoms - 6 grams daily.
Divide into two equal doses. Take first dose at breakfast. Take second before lunch.
I
Before starting with full dose take a small amount and watch for any allergic reaction.
For whatever it may be worth, Dr. Costantini recommended high dose thiamine to me long before I was on medication. For whatever else it may be worth, there is no real way to know whether B1 (or any other supplement) slows progression. For all the talk about slowing progression on this site and all the hopes we all have for such a magic bullet, I don't think there is any substance which has been conclusively shown to slow or stop progression of Parkinson's Disease -- including B1. I still take it because it's relatively risk free and plenty of people swear by it, but it certainly hasn't stopped progression for me.
I would start B1 with 3grs daily divided dose (morning and noon) with 400 mg magnesium without any other B vitamins for a couple of months and then I will add 400mcg Folate daily and Hydroxycobalmin 500mcg x 3 times a week and Niacin (b3) 50 mg 2 times a week.
Hi Jay, once you’re finished with the B1 test, maybe try the Methylated B multi also. It seems to help balance or some thing. I’m sorry to be vague but I also have problems with feeling like I’m slipping in my right foot and for some reason it seems to help. I suppose because it’s related to nerve signals. But perhaps it would help one of your symptoms. I can’t quite pinpoint what it is but I just feel better when I take it. I’m sorry again to be kind of wishy-washy but I’ll try to observe a little better.
If you aren’t anxious I would slowly increase b1 each week until you start feeling anxious then stop a day or two and go back a dose. If you start needing to pee a lot more it probably means it’s too much as well.
I would try the other b vitamins and magnesium too.
Have you tried the red hat? Seems to help people.
For apathy try rhodiola rosea. But only after getting your b1 right.
Are you on pharmaceuticals. I can’t remember.
And of course I always suggest you try Hardys daily essential nutrients with added vitamers which will replace the magnesium and other vitamins. As it has trace elements and all the vitamins in their correct rations. But still take extra thiamine on top.
Surprised to hear the bulb was faulty, they are quite robust, bought mine on Amazon and they have a good return record. As an update, i can not say for sure if it is helping, thats what is so difficult with all these things we try but my shoulder pain which woke me every night as eased a huge ammount, does not wake me now and as far as I knownothing has got any worse so will stay with it. 20 mins a day or more on my head.
I got from Amazon and it is imported. I forgot to mention that I received full refund for the bulb,but the bulb was received damaged and therefore I could not use it
Obvious question perhaps but have you looked at your diet? There is another recent post about sugar, which causes inflammation and which I’m avoiding. Something to consider?
If you are committed to improving your health you must stop eating sweets. If you are not committed to improving your health you will continue to eat sweets.
There is no way of “sugar coating” this reality.
Next time you eat sugar, think of how you are killing your brain.
You need to change your association. It is a compulsion. It does not bring you happiness. It is a burden.
I’m being very firm bc I care and I know you can do it.
First time poster here and hope this helps: L-Glutamine (amino acid) can help us to not crave sweets (info obtained from "The Mood Cure" by Dr. Julia Ross).
Hi JayPwP ~ It took us 4-5 months to get the right (very low for my husband) dose of B1 Thiamin Mononitrate figured out. The regular B1 Thiamin HCL did not work for him. Also, we have added Mannitol to his mountain of supplements. Yesterday I forgot to put mannitol in his morning coffee and his anxiety returned. Then I remembered that I had forgotten the mannitol. Shortly after I gave it to him he settled back down. I have no idea if the mannitol really was responsible for calming him or not. We just keep trying and trying…. It’s a persevering guessing game so don’t give up!!!! And keep doing your research!!!Have a fabulous day!!!
Yes, they got a total of 10 mg/day. Jay said he is taking 10 mg in two doses, that is the same as the study dosage of 10 mg/day.
In the second study, this is a direct quote showing 50 mg/day total melatonin dose :
>>> ' The second group received 25 mg of placebo at 12 pm and 30 min before bedtime for three months, followed by four days of washout, and then received 25 mg of MEL at 12 pm and 30 min before bedtime for three months. ' <<<
These two studies are considered high dose melatonin, but they are at the lower end of the scale. This study used 250 mg/day in people with diabetes type 2 and it is more like a true high dose melatonin study and it showed significant improvements in 8 weeks :
Are you guys saying that Parkinson's patients have much lower levels of Melatonin, or are you saying they need more for treatment? I've read that 10 mg should be the maximum dose for the average person but I don't know about those with Parkinsons. I don't have PD (yet) but my brother did and I feel like I'm having early symptoms. But I took 3 mg once maybe 10 years ago and felt hungover-sleepy the whole next day. Seems to me that 20 or 50 or 100 mg is a crazy amount. Is there a blood test for Melatonin levels?
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