B1 and madopar experience: Hello everyone... - Cure Parkinson's

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B1 and madopar experience

leenau2 profile image

Hello everyone. This is my first post to your wonderful site. My mom age 68 was diagnosed 10 months ago with PD by datscan. She had symptoms at least 5 years ago such as sleep disorders (screaming every night),slow walking, and imbalance. Last year the symptoms got worsed plus she had frozen arm , mask face, choking when drinking water, confusion. No tremor though. So we went to a neurologist and started her with madopar 200/50 1 pill a day dividend at 3. She didn't see any difference so the Dr increase it to 2 pills then 3 and now 4 pills a day. From the above symptoms mask face and the confusion got better. The gait and balance got worsed plus had headaches and brain fog probably from madopar. The Dr says that by now she should be able to walk normal with this dose but this never happened.Is common on pwp or my mom is the exception?I was very frustrated so l start to look for other treatments.

Then two months ago I read at this site about B1 HTD treatment and I started my mom August 1 with 500mg B1 solgar.

Fist week improvements: brain fog gone and she felt much better. 2nd week raised at 1000 mg 3rd week 2000mg.Then she got jittery and resume at 1000mg after a week of. Improvements by now: The sleep improved 95% no more screaming, swallowing improved 90%,micrografia improved by 30%, she can get up much easier now. She doesn't have any improvement in balance yet which is the main problem.Still trying to find the right dose as per Dr.Constantini.

I wonder if someone has same experience with madopar and B1. Thank you

23 Replies

"Parkinson's disease" Vitamin B1 use instructions :

Join my Facebook group Parkinson’s thiamine hcl m.facebook.com/groups/23226...

leenau2 profile image
leenau2 in reply to RoyProp

Thank you RoyProp for the information.I have read all your post and you do a wonderful job.

RoyProp profile image
RoyProp in reply to leenau2

I worry that madopar may not be best choice

Dap1948 profile image
Dap1948 in reply to RoyProp

Madopar does the same job as Sinimet and is preferred in U.K. and Europe. I don’t know why it hasn’t helped this lady's symptoms

leenau2 profile image
leenau2 in reply to Dap1948

Hi Dap1948.Dr wonder why madopar doesn't have the results he was expected. Says maybe she doesn't absorb it properly. So yesterday he added 1mg rasagiline in the morning.

Required Reading Book List for Advocates of their own health.

Number One:

“The New Parkinson’s Disease Treatment Book” Second Edition, 2015

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic.

Thirty years experience…

Less dependent on a live doctor.

Condor13 profile image
Condor13 in reply to RoyProp

I agree, this book should be required reading for anyone with PD.

Solgar tablets are choke hazard. Better capsules.

vitacost.com/vitacost-vitam...

JayPwP profile image
JayPwP in reply to RoyProp

I agree, and cheaper too

Ronshere profile image
Ronshere in reply to RoyProp

I toss my capsules in water and they tend to soften up and become drinkable within the hour…if taste is an issue, consider adding your mannitol to the water and the sweetness will overcome B1s tartness…

B1 500mg Italian pharmacy

Farmacia Severi <info@farmaciaseveri.com>

Andrea Severi

Severi-Piazza Dante Pharmacy, Grosseto, Italia

farmaciaseveri.com

The price of Vitamin B1 500 mg pure tablets (without excipient* inside) is 14.00 euros per 100 tablets (28.00 euros for 200 tablets, 42.00 euros for 300 tablets and so on ...).

The price is the same for all doses of Vit.B1.

We can send by mail in about 4 days and the [shipping] price is 22.00 euros.

You should tell me your name, address and phone number.

You can pay by Bank at:

PHARMACY SEVERI snc

BANCA SELLA - Ag. Grosseto - Viale Europa

IBAN: IT 12 I 03268 14300 052824858270

BIC / SWIFT: SELBIT2BXXX (x transfers from abroad)

As soon as the payment arrives, we will send the preparations.

We will not advise you as to how to use the product. You should refer to a neurologist specialized in Vit. B1 for Parkinson's.

* excipient: an inactive substance that serves as the vehicle or medium for a drug or other active substance.

Translated from French by Pa-zzi69

Not responsible for this information as it is copied from

Healthunlocked.com/parkinsonsmovement

leenau2,

I am very happy to hear that your mom is a responder to B1 and saw rapid improvement of multiple symptoms!

Dr. Costantini used the combination of good symptom improvements and a good "pull test " to try and determine when the B1 dose was optimized. I take it your mom's pull test is not quite "good " yet?

It sounds like you have narrowed her optimal dose to somewhere between 1,000 mg and 1,900 mg. To have an even better idea of where that optimal dose is, you will have to remember how quickly her "jittery symptoms" resolved after stopping the 2,000 mg dose. If it resolved very quickly such as the next day after stopping 2,000 mg, then 2,000 was close, but possibly a little on the high side. If it took longer such as 2 days after stopping B1 then it is a bit lower. Here is a link to a page that explains how Dr. Costantini attempted to find the optimal dose for each of his email patients that should help you zero in on optimal dosing. This page also contains all of the information that Dr. Costantini left with our forum :

healthunlocked.com/cure-par...

It is also worth noting that some members have been able to lower their C/L dosing once they have optimized their B1 dose.

Good luck and please keep us updated on your mother's progress!

Art

leenau2 profile image
leenau2 in reply to chartist

Thank you Art for your help. I appreciate what you do guys here. It's lifesaver!I did the pull test with video when we started. By now no improve in balance but I am positive that this will happen later.

Yesterday we went to the Dr and he said that she should be able to walk normal by now with this dose 800 mg madopar. So he added 1mg rasagiline in the morning for a month and then will see.

I told him about B1 and he was positive said if this helps keep using it. But he said that 1000 is way too much and she should take around 250 mg .

Art

"Dr. Costantini used the combination of good symptom improvements and a good "pull test " to try and determine when the B1 dose was optimized. I take it your mom's pull test is not quite "good " yet?"

This is at the heart of why I struggle to get going with B1. I have a perfect pull test. Like a professional athlete. I have done since diagnosis. I have 4 unopened pots of 100g sublingual. And a perfect pull test. Where do I start?

Mr. Poo,

He was looking at symptom improvement from prior to B1 plus the pull test to get a better idea of when the dose was as close as he could likely get it to optimal. Some people relatively early on in the disease have very good balance, so then he was down to seeing what if any improvement he could get in terms of symptom improvement. I don't ever remember Dr. Costantini telling me that one of his patients did not improve from B1, but to me, from what I have seen on this forum, some people do not respond to B1, at least in terms of symptom improvement. I see Marc as a non responder because he gave B1 well over 2 years with no apparent benefit to him, but I think he still takes it, which to me is good for IL-17 reduction. So really, it seems that it comes down to whether your symptoms improve or they don't. If they don't improve though, I think it may still be worth taking B1 because of its potent IL-17 inhibiting effects. IL-17 is undetectable in healthy controls, but is elevated in PwP and some other diseases and contributes to the chronic low grade inflammation seen in PD which can be long term destructive.

To me B1 is like most supplements and medications, it takes trial and error to find what works best for you. Even the gold standard, C/L, some people report it does little to nothing for them, so they move onto the next medication to find out what works.

Another important benefit that some members have reported is that B1 allowed them to reduce their C/L dose and C/L sparing effects can be useful in the long run because it may allow a longer effective usage time in terms of years for C/L in the patient and may also allow the patient to keep their dose lower for many years thereby decreasing the potential for dyskinesia that is sometimes seen once the patient is at the higher end of the C/L dosing range. This would be of significant importance to people who are sensitive to C/L dyskinesia promoting effects.

If a person's symptoms are mild though, B1 may not be able to improve on them. The good thing with B1 is it has a very good safety profile compared to most meds you might take for PD, so it is a relatively low risk trial for those who choose to test it.

Lastly, like melatonin, B1 is produced in a healthy gut, but in the perturbed gut that is seen in PD, not so much. I think with most things the body naturally produces like melatonin and B1, it is because the body has a definite need and many uses for it and thiamine studies confirm that the body has many uses for it.

Art

ArtThanks for the detailed reply. I fear I risk hijacking the thread by wanting to talk about me. The soprano warm up (I am married to a trained soprano)

Have you heard a soprano warm up? "Doh reh mi, me me me me me"

I think I may respond to B1. My problem is that my main symptoms that bother me are resting tremor and bradykenesia. In particular "sticky left hand fingers playing piano). Also left foot drag and lack of left arm swing. B1 hasn't obviously helped any of those, and I stopped B1 each time because of worsening tremor. (not necessarily B1 causing it, but as a preliminary to booking a neuro appointment to review meds I wanted to clear distractions). So far the pattern has been the tremor improves and I don't book the neuro. Although my wife says I've been a much nicer person since starting pramipexole I don't have issues I am aware of with depression, confidence, or other mental issues (may be brain fog and slow speach before the red lights)

Where do I go? (your stuff about B1 and digestion doesn't really fit Dr C's megadose therapy. I'm not deficient in B1 due to digestion. I know that from blood tests. But the whole point of Dr C's protocol was not correcting a deficiency but providing a megadose

Thanks for sharing, great to hear your mom is doing better. You should see more improvement as you continue with B1

Thank you Erniediaz1018.I will keep posting my experience . Hope for the best to all of us...

I’m glad your mum is responding well to B1, seems sometimes improvement is not always in a straight line. My husband is taking B 1 too, and Madopar and Rasagaline. The B1 he s taken for more than 2 years and takes 1000mgs each morning, occasionally did have another 500mg later on but mostly seems ok on 1000mg. Neuro started him on Madopar 6 years ago now, it took a while to see any improvement in symptoms but they did gradually.

Added in Rasagaline nearly 2 years ago and seems ok with this combo. He can walk ok sometimes taking a while to get into a good stride. He’s not really ever had balance issues, fortunately.

Just shows how responsiveness to drugs and supplements varies so much in PD.

leenau2 profile image
leenau2 in reply to Zella23

Hi Zella.Thank you for the response.

I'm glad that your husband is doing well with his meds and B1. I know it takes time to find the right dose because everyone is different. Hope for the best...

I also take Madopar 3x a day and take 250mg of B1. I tried to take higher doses but I became extremely lethargic, so reduced my dose. My PD is progressing very slowly, the non-motor symptoms bother me the most. I also drink 2 cups of raw cacao a day (magnesium) and eat several bananas a day for potassium, both of which seem to play a role with B1 from what I've read.

leenau2 profile image
leenau2 in reply to DJSa

Have you noticed any improvements with B1?

I had problems with Sinemet, but none with Madopar (actually Prolopa which is the Canadian version) The dosage has slowly been increased to three every three hours , of the 25/100 strength, with good response and no side effects at all. I have never needed any supplements. The B1 is recommended on this website , not on any others, but it is safe .

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