High Dose B1 Thiamine HCL and Mannitol - Parkinson's Movement

Parkinson's Movement
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High Dose B1 Thiamine HCL and Mannitol

SarahCTT
SarahCTT

My husband is currently taking Mannitol 20g a day, just trying since there have been reports saying it works to alleviate symptoms. We are keen to try HDT soon and wondering if we should continue Mannitol or just take B1 alone? Any comments is greatly welcomed!

Sarah

33 Replies
oldestnewest

Must take B1 with carbidopa/ levodopa

Tonkatruck
Tonkatruck in reply to RoyProp

Roy this is the first I've heard of that can you explain more why the two need to go together please. And if taking mucuna would be acceptable with the b1 as I'm not on prescription meds yet

RoyProp
RoyProp in reply to Tonkatruck

The advice given by neurologist

lakspen
lakspen in reply to Tonkatruck

I am in same dilema. I am not prescription meds yet and not tried mucuna. Thinking of starting Thiamine and Mannitol. Anyone tried and seen improvement with tremor?

Tonkatruck
Tonkatruck in reply to lakspen

I do pretty good on the macuna thiamine, and mannitol. fine motor skills,lack of motivation and apathy are my biggest complaints today. Nero wants me to start with requip, azilect or mirapex I am seriously contemplating one of those three

lakspen
lakspen in reply to Tonkatruck

I see. What are your major symptoms? Mine is primarily tremor in left hand.

Tonkatruck
Tonkatruck in reply to lakspen

Action tremors. Eating with a fork, shaving , standing in kitchen/shower etc. Hand legs and sometimes whole body. I move slow, don't swing my arms. I can live with all that but the apathy, lack of motivation and low energy is something i want to aggressively attack

Hi Tonkatruck, did you start requip, azilect, or mirapex yet? Any help with apathy?

No but i did start cd/ld 25/100 , 1.5 tabs 3 times a day . Got a movement disorder specialist who decided those others were not a current option. This all on the heals of my positive dat scan. I'm currently started my last week of a taper up phase and feeling better

tigerclaw
tigerclaw in reply to Tonkatruck

Hi Tonkatruck,

What the movement disorder specialist told you to take for those bad tremor ? Or you taking something different for your tremor ? My mom has the same issue, and the neuro want her to take 1.5 tabs Sinemet 3 times like you specified above.. I like to try to calm her tremor done as well so she can hold a glass, and improve her motor function..

Tonkatruck
Tonkatruck in reply to tigerclaw

My tremors were not bad. I have movement tremors by the way no resting tremors. The sinemet and b1 together have calmed those tremors even though sinemet usually does not quite down tremors and the specialist cautioned me that the sinemet may do nothing for tremor. Sinemet is currently the only PD drug i take

chartist
chartist in reply to lakspen

lakspen,

As far as tremor improvement, at least 29 forum members have reported tremor improvement of varying degrees that they attribute to HDT/B-1 or HDT/B-1 added to a C/L product. On the other hand some members have reported no improvement in tremor or if there was improvement, it was only temporary.

Further, regarding tremor improvement, Dr. Costantini felt that his best improvements occurred when he was able to combine various C/L products with B-1 as he felt that the two had synergy together as in the two combined could do more for his patients than either one alone, once he was able to optimize the dose of both for each patient.

I am not positive, but I think some members have found similar synergy between some mucuna products and B-1.

Art

lakspen
lakspen in reply to chartist

Thank you for your advice. My neurologist advised me not to take carbidopa/levodopa yet as tremor on my left hand is the significant symptom and so far able to manage with lifestyle changes.

I want to try out these alternate options as I understand they have no side effects unlike sinemet etc.

chartist
chartist in reply to lakspen

It might be a mistake to assume that alternatives have no side effects. Members have reported side effects with most alternatives mentioned on this forum and some of these side effects are very significant! It is a good idea to keep in mind that people can also be allergic to almost anything including things that are naturally produced in the body such as melatonin and thiamine!

Art

SarahCTT,

If you decide to test HDT/B-1 here is a link to a comprehensive post that I wrote that should answer most, if not all questions you may have about HDT/ B-1. On the HDT FAQ page, Dr. Costantini answers 58 frequently asked questions and there are more answers to common HDT questions on the HDT primer page also. There is another page where members report 80 symptoms that they have found relief from. There is also a page where members discuss their experiences with HDT. Not everyone responds to HDT, but the majority of forum members have found symptom relief. Dr. Costantini found that in 7 years of HDT treatment experience of his office patients, he saw no disease progression.

healthunlocked.com/parkinso...

Forum members have reported as great as a 95% return to normalcy and as little as 0% benefit but the majority of members who have tested and used B-1 have reported significant benefits . Dr. Costantini reported that every one of his HDT patients found varying degrees of improvement, but in reading this forum, it seems that nothing works for every single person on this forum including prescription meds, alternatives, vitamins, exercise and supplements.

One difficulty that some forum members have is finding the correct dose of B-1 which can take months to determine while some members find their correct dose the very first day!

Some members have reported taking up to seven months to see their first benefit from B-1.

Other members have found benefit from their very first day of HDT! This can make it difficult for slow responders to stick with testing HDT, but very easy to continue HDT for people who notice benefit in the first month or less of testing because once they see benefit, then they are fully interested in continuing. Slow responders often do not even realize they have found benefit until people around them start telling them that they notice that the person is no longer shuffling or has noticeably reduced tremor or a stronger and clearer voice. This is very common and one of the reasons that I wrote the page of 80 benefits reported by forum members so that other forum members might notice things that have actually improved , but they didn't even realize it until they read about the symptom improvement. This is the precise reason for taking lengthy videos of before HDT and regularly such as once a month of the patient walking, talking, just moving around such as going up and down stairs, walking in a figure eight etc. These videos will quickly determine any improvements or lack of improvements which will be especially important for slow responders. Without the videos, you can not accurately determine changes that occur over a month or longer, it is just too easy to forget how you were and this has been shown over and over again. So if you decide to test HDT, do yourself a favor and take videos at least once a month.

Members often report reduced or eliminated constipation or reduced or eliminated brain fog or an increase in energy that enables them to do things that they hadn't been able to do in quite awhile.

Lastly and very importantly, the effective dose that members have found for HDT/B-1 is as low as 25 mg per day up to 4,000 mg per day.

Good luck and please keep us posted if you decide to test HDT/B-1!

Art

No conflict between thiamine and mannitol has been reported as far as I know.

In an excellent interview with Karen Raphael, a clinical research scientist who was diagnosed with PD nearly 10 years ago (first posted by 'jeffreyn' then MBAnderson), she describes her approach to prospective “treatments” like these:

"The question for me always is: Where is the evidence? To start, I go to the peer-reviewed literature for at least preclinical research data to see if whatever I’m looking at has a plausible mechanism for treatment. If someone is proposing that treatment X works just based on evidence from fruit fly research, I’m a little skeptical. But if there is a convergence from basic science and other sources and there is no major known downside to the treatment, then I’d maybe recommend giving it a try. However, one needs to be very skeptical of any treatment claims, especially when there are conflicts of interest like profiting from a product purchase. Also, if somebody says they have done tons of research, and then you look at it and see that it consists of 300 case studies, that is uninterpretable. Those 300 may have come out of a sample size of 3000 people who tried the treatment.

"Mannitol is a good example of this. The people promoting it are building a registry for people to report their experience, but you are probably more likely to actually fill out a report if you have had a good experience. They also said they are going to release the results when they are “statistically significant.” That is nonsensical for anybody who understands statistics, so I am skeptical of the case for mannitol."

The same approach should be applied to HDT/B1.

Full article (with interview audio): tmrwedition.com/2018/05/31/...

Good point... My mom taking 25/100 Sinemet in the morning and 30 minutes after her B1 many many months with magnesium bis glycinate 400mg to 600mg a day, but "No" I don't see improvement beside anxiety keep hitting her every day and sleepiness and the only meds helping in her anxiety is lorazepam. I try everything you name it.. I have a full vitamin store all ready at home you name it ( I have it) even including mucuna, and zandu zandopa... Start to be sceptical to be honest , but i don't give up.. I want her tremor to decrease and her motor function to improve and I do constantly anything and everything to help her. She is 75.

Good luck everyone

I take mannitol and B1 . No clashes at all

lakspen
lakspen in reply to alaynedellow

Are you also on prescrition meds too like Carbidopa/LDopa?

alaynedellow
alaynedellow in reply to lakspen

Yes i take slow release modopar

I've been on both for quite a while, and have not had any problems.

lakspen
lakspen in reply to KERRINGTON

Are you also on prescrition meds too like Carbidopa/LDopa?

KERRINGTON
KERRINGTON in reply to lakspen

No, on mucuna, probably shd be on Sinemet though.

lakspen
lakspen in reply to KERRINGTON

Would you be able to share which brand products are you using? What were your symptoms and how they re now?

Ok, so I'm confused. Are these " alternatives " intended for folks taking dopamine or an agonist? I'm brand new y'all - to this forum and PD. My first Neurologist prescribed Sinemet - dopamine...we ( my bride and I ) sought a second opinion. The second Neurologist's opinion was to go with Rytary - an agonist. Sinemet 2 months. Rytary 2 months. Both have side effects....plus Rytary is very expensive $4k / month cash.

Rytary is not an agonist. It is simply an extended release form of carbidopa/levodopa (C/L), the same active ingredients in Sinemet. These other treatments are typically in addition to the prescription meds. Some people take Mucuna instead of C/L, as it's a natural form of L-dopa.

I was on Rytary for several months, but it wasn't as effective as expected. So, my MDS recently changed me back to Sinemet. However, he told me something that 3 previous neurologists had not: that C/L should NOT be taken with food, particularly protein. I now try not to eat within an hour of my doses, and it is much more effective than it was before. I've also started HDT in the last month, and I've seen some minimal improvement.

health_detective,

A member or two on this forum have reported almost no benefit from C/L if taken with a high enough protein meal. Doctors know this, but sometimes forget to share!

Art

I also noticed when I got my prescription refilled that the directions said, "May be taken with or without food." SMH! If the doctors don't tell us, and the pharmacy doesn't tell us, then how are we supposed to know?

Thomas

That is a very good question, Thomas and the answer to your question is, you have come to the right place for those answers!!! 😊😊😊

Art

Hello Thomas,

What is your results/decision regarding HDT?

Hi Roy,

I'm currently taking a brief break in the HDT therapy. I'm going to see if I need to adjust my dosage. I'll update you via your FB group once I've got the new dosage figured out.

Thomas

Don’t forget after the break

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