Ups and downs with thiamin

[Beckey]

I have been feeling very upbeat about thiamin, especially after hearing from Dr. C. Then I talked to my doctor (yes, a movement disorders specialist) and took a nosedive. I asked her if she was familiar with Dr. Costantini, and she said no. I summarized his work with thiamin. She scoffed, "He just made that up." It was so dismissive. It sunk my morale since she has such high creds. Friends in my support group and exercise groups say I'm very lucky to have her as my neurologist. Now I don't know who to believe!

[AmyLindy]

We all face similar dilemmas; u are not alone. But, it can be lonely. In the end, u decide.

[Hidden]

So, your Doc probably thinks we PwP are all liars. Maybe a case of mass placebo?

[AmyLindy in reply to Hidden]

Mass placebo!!!

[jeffreyn]

In my case, I've been reading with interest the posts and comments about Thiamine, but I'm not yet ready to give it a try.

I'm looking forward to the upcoming post about Thiamine on the SoPD blog. Simon said recently that a Thiamine post is "in the works".

[laglag in reply to jeffreyn]

What is the SoPD blog?

[jeffreyn in reply to laglag]

scienceofparkinsons.com/

[Despe in reply to jeffreyn]

scienceofparkinsons.com/201...

To Mannitol or not to Mannitol?

[lempa_nik]

I find it ironic that her flippant, knee-jerk, spur-of-the-moment reaction is itself an example of "making something up." If even 10% of those in this community who are trying the thiamin are significantly benefitted, then her skepticism will be discredited.

[munchybunch]

That’s sooooo typical of neuros. Our neuro scoffed at us when we told him we were using supplements eg vit c d , turmeric etc. he said it was a waste of time. However all he ever does is push more meds and more meds! We ve come to the decision now to drop the meds and try natural remedies until andy really needs them. Meds are not good for any one esp as his dad had prostate cancer and Pd and prostate are closely connected. Apparently madopar can lead to higher chance of melanoma and prostate cancers. I’d try the b1 without question. You have nothing to lose and so many have gained so much from it !!

[bassofspades]

projects.propublica.org/doc...

This might explain it. See how much your dr received from pharmaceutical companies.

[marion11005 in reply to bassofspades]

Interesting--my neurologist received $709 thousand .

[Erniediaz1018 in reply to marion11005]

Wow 😲 no surprising.

[pomsmom in reply to marion11005]

I checked this and found that my neuro received almost $500,000!

[MBAnderson in reply to bassofspades]

Good one.

[Gioc]

I think that all those who look at thiamina have asked their neuro about it, but I'll tell you what my family doctor answered, who is also a researcher. "He took a quick look at the results presented by Costantini at the parkinson convention, about a page, but it is his conclusion that completely convinced me, he said:" If I were in your shoes knowing about the parkinson's disease and the effects devastating that causes if this treatment based on B1 produces what it says I would try immediately without hesitation to see if it works since it presents very low risks ". Understand the finesse. He then prescribed the b1 injections for a month and then told me to be followed by Costantini if ​​I wanted to continue. The b1 is very well known and is not a new thing, it has existed for more than 100 years and the collateral effects are known, the b1 is not the b complex. If I not had him as a doctor I would not be here.

I like to think that doctor and patient form a group that work shoulder to shoulder against the disease, without any other purpose. This is also my ideal scene and anything that deviates from it is something that should be readily remedied.Gio

[Hidden in reply to Gioc]

, he said:" If I were in your shoes knowing about the parkinson's disease and the effects devastating that it causes , if this treatment based on B1 produces what it says I would try immediately without hesitation to see if it works since it presents very low risks ".

[jujulini]

sometimes the mds with the "high creds" are the ones that think theyre gods. im so lucky to have a neuro that doesnt push meds, and has an open mind. he was very interested in the mannitol study the last time i saw him. dont get discouraged. do your own reaseach, dont be afraid to try things on your own. we see these docs for 20 minutes every so many months. i think we know our own bodies better, and what works, and what doesnt.

[Beckey in reply to jujulini]

Juju, your doc isn't in San Francisco by any chance, is he?

[dopedope]

cred? she does not claim anything much in the way of results does she? medical field can't claim anything much on this condition, just some temporrary relief that may or may not be detrimental in long ruun.

we're on our own, we can do our own experimentation. that's my view. if they don't want to monitor you, i suggest a good naturepathic doc.

[jujulini in reply to dopedope]

yes, i have been saying "we are on our own" for a long time. i had to figure out for myself the mercury link to my illness. i was mercury poisoned (with a level off the charts) for years, and after mutiple tests, multiple docs couldnt figure it out. one neuro said to me, "i cant figure out whats wrong with you. and you are refusing steroids and a spinal tap. come back in 6 months." and he had "high creds" and a fancy office with a glass enclosed elevator. but a few years later, he was arrested for illegally prescribing oxycodone and insurance fraud. so alot of education doesnt matter, when theres greed. and i wasnt profitable enough for him.

[dopedope in reply to jujulini]

you probably have him pegged right, but it's so easy to get into trouble lately. the criminal element is taken over or something. not same world, or even rules. i still believe in white hats.

[KERRINGTON]

That's why I have no respect for most doctors...keep her till you maybe hear of a doctor who is willing, and curious enough to investigate b 1, or any other promising supplement.

[danfitz]

Sorry to hear your neurologist is so close minded. If it were me I would be out looking for a new one.

[park_bear]

Beckey, I take it this is the same neurologist you have been going to all along. The one that pushed more and more levodopa on you even though it was not working. The one that failed to consider that the psych meds you were taking are also known to cause tremors.

How are you doing at this time? I recall things were rough a while back.

I am taking thiamine, 2 g two times a day. No adverse effects and it has been helping.

[Beckey in reply to park_bear]

I'm much better than I was a while back, thanks for asking! I manage to get out to boxing and ballet for Parkinson's -- something every day -- and often without a cane.

[park_bear in reply to Beckey]

I am very glad to know that, Beckey!

[AmyLindy in reply to Beckey]

Yayyyyyy

[unsinkable]

Sorry Becky that you did not get some positive support from your caregiver. There may be a wide range of approaches, but most mainstream docs are not open, it seems that covering all bases to them just means taking more and more prescribed medications.

[jeffreyn]

Beckey,

"Nilotinib" just came up on another thread, and this reminded me that some time ago you said that you were taking nilotinib (for CML I think it was).

Anyway, my point is, if you are still undergoing treatment for some form of cancer, you should probably also discuss your "high-dose Thiamine" plans with your doctor(s) (i.e. not just with your neuro).

Jeff

[Beckey in reply to jeffreyn]

Good suggestion! Will do.

[Phusson]

It's hard to believe that something as simple as a vitamin can help and neurologist don't know about it. I've read many postings and it appears there is evidence from people who have experienced improvement taking B1 or could they all be part of a cruel joke started by an Italian doctor ? I emailed Dr. Costantini and he replied with his recommended dosage based on my history and I started a few days ago. I understand B1 can't hurt us so for $15. a bottle I'll take the chance and hope it helps. If it does, great ! If not, I'll have lots of B1 in my system and be out a few bucks. One more thing, we all know our doctors sometimes take a guess at what kind and how many pills we should take as PD progresses.

[AmyLindy in reply to Phusson]

Yep!

[Hidden in reply to Phusson]

Yep!

[Hidden]

Beckey, most of the neurologists or PD experts would expect to win the Nobel Prize for Medicine if they discover a cure for PD. They tend to dismiss all research that does not involve pharmacology. Drug companies cannot make a large profit from thiamine. If thiamine works for you, then that is all that matters. Please let us know if it works for you. The other promising area of research is the role of gut bacteria, and the fact that our gut has neurones that communicate with the brain. Faecal transplants are being tried in the UK on humans, to see if PD can be cured. The drug companies would hate that too. Co enzyme Q10 is supposed to work in very large doses, but it would be very expensive. I use English spelling, because that is what I was taught at school. It does not matter whether it is thiamin or thiamine. If thiamine helps you, you could combine it with foods that support good gut bacteria, such as kefir, natural yoghurt, bee pollen, mushrooms, tempeh, blueberries etc.

[Gioc in reply to Hidden]

PDman I agree in total with you .

[Beckey]

Thanks so much, all of you, for your enlightened feedback and support. My neuro told me that coming to California from New York presented culture shock -- encountering patients who prefer nutritional supplements to "proven" pharmaceuticals. It's kind of surprising since when I had a bad reaction to sinemet, she blamed not the drug but my anxiety and prescribed a meditation class

[jimcaster in reply to Beckey]

Please check my recent posts regarding Dr. Costantini and thiamine. I agree with Phusson: I understand B1 can't hurt us so for $15 a bottle I'll take the chance and hope it helps. If it does, great! If not, I'll have lots of B1 in my system and be out a few bucks.

[wifeofparky]

Just because a doctor receives money from a Pharm company does not mean he only pushes pills. My husband's neuro is on the list. He does a lot of research work so the $21K he received could very well have been a grant to study their meds.

[racerCP]

The real question is do they know of any harm this regimen can do because obviously it is not a part of the medical protocol being practiced. I try to take things prophylactically, if it can help forestall the inevitable.

[SCT25]

My neurologist, who is also a movement disorder specialist, has always been open to "alternative" treatments for combating PD. When I brought up the subject of medical marijuana I assumed I would get the company line, but instead we had an open conversation. Bottom line is that many doctors have little interest in suggesting anything they can't make money on.