My dad and two of his siblings have Parkinsons. Not a single study I've read suggests there's a strong familial link

[ironfist]

Thanks for the book recommendation.

 

[Birdie]

My husband is doing well with high dose thiamine. It's taken about 2 years to find his best dose. (During this entire time he has been helped). Dr Costantini had a debilitating stroke post surgery just after I found out about him. I used his website and the videos. He was a gracious man who answered hundreds of emails and didn't charge people around the world for his help.

Daphne's book is easy to read and I recommend it for anybody starting out.

 

[John capper]

FYI, have you checked out the research using GBH to treat PD? It's really positive (though I admit I'm a bit of a fan boy and reckon GBL/GBH fixes everything bar ingrowing toenails!)...Though you being in the states means obtaining the substance would be problematic (or very expensive if have to buy Xyrem....just can't get my head round how xyrem is 130 times the cost of european GBL, sure there's a good reason...In mainland europe would be obtainable and cheap. Have personal experience with this (PD and GBL) and the effects aren't slight. 'Reborn' is no exaggeration....(I don't say this lightly, GBL can be quite serious stuff, but just thought I'd pass on for your info)

 

[Pablo Cruise]

Thiamine supplementation helps a lot.

In 2014, I went the EDTA by IV route after being diagnosed with lead poisoning. Nobody bothered to check my thiamine status beforehand. I was prescribed 40 treatments; halfway through I developed rheumatoid arthritis which pretty much incapacitated me. I found Ray Peat's website, read up on hypothyroidism, found a good endocrinologist who doubled my thyroid hormone and changed the brand. I also supplemented multiple b vitamins, including thiamine. The rheumatoid arthritis symptoms went away. I did not return to finish the EDTA IV treatments for the lead poisoning.

I learned about the heavy metals / thiamine connection in 2020 when my thiamine function got blocked by Bactrim antibiotic which resulted in severe thiamine deficiency symptoms. I read the Parkinson's Disease and the B1 Therapy book and realized that indeed I had had all the symptoms the case studies mentioned fall of 2020. I am convinced that had I gone to a neurologist during that time and been tested I would have been diagnosed with Parkinson's.

I've been on high dose thiamine hcl for 2 years now and am doing well.

Agree. Some docs believe high dose Thiamine 1500-2000mg daily in divided doses helps. I know one person it helps based on my recommendation. Of course great for alcoholics also to replace their deficiency in similar doses. There are a number of English studies on Thiamine and alcoholism.

 

[Pablo Cruise]

My husband is doing well with high dose thiamine. It's taken about 2 years to find his best dose. (During this entire time he has been helped). Dr Costantini had a debilitating stroke post surgery just after I found out about him. I used his website and the videos. He was a gracious man who answered hundreds of emails and didn't charge people around the world for his help.

Daphne's book is easy to read and I recommend it for anybody starting out.

What dose is your husband on? I recommended 600mg 3 times daily with a Super B Comlex tablet daily. Actually using the Benfotiamine instead of Thiamine and smaller doses.

 

[ironfist]

My husband is doing well with high dose thiamine. It's taken about 2 years to find his best dose. (During this entire time he has been helped). Dr Costantini had a debilitating stroke post surgery just after I found out about him. I used his website and the videos. He was a gracious man who answered hundreds of emails and didn't charge people around the world for his help.

Daphne's book is easy to read and I recommend it for anybody starting out.

Does the book differ from Dr. Costantini's website?

 

[Lizb]

Does the book differ from Dr. Costantini's website?

The Facebook page is worth following. Daphne answers questions there too. I think it's called Parkinson's B1 therapy.

 

[mostlylurking]

Does the book differ from Dr. Costantini's website?

Regarding Dr. Costantini's teachings about thiamine: The main/only difference that I found is that Daphne herself chose to use sublingual thiamine mononitrate (100mg tab, dissolved under the tongue) instead of the high dose thiamine hcl. I did try the sublingual thiamine mononitrate for about a week and it was obvious to me that it was affecting me at least as much as the 2 grams of thiamine hcl that I usually take. However, I chose to go back to the thiamine hcl because I felt that the mononitrate variety was affecting my short term memory negatively. I'm a little cautious about that nitrate part; I'm extremely sensitive to nitrates and avoid them if I can.

Regarding the basic information provided in the book: I found the personal health journeys provided by the different Parkinson's Disease patients gave me additional information about the symptoms they suffered and the benefit they experienced from high dose thiamine.

 

[mostlylurking]

Agree. Some docs believe high dose Thiamine 1500-2000mg daily in divided doses helps. I know one person it helps based on my recommendation. Of course great for alcoholics also to replace their deficiency in similar doses. There are a number of English studies on Thiamine and alcoholism.

My own personal journey of high dosing thiamine hcl revealed that my symptoms (in particular my digestive tract symptoms) massively improved/normalized when I started taking 1 gram of pure thiamine hcl powder 2Xday. The second day on this dose was truly amazing. The lower doses that I took when working up to this 2 gram dose did relieve some symptoms (lactic acidosis) but finally getting to the optimum dose that Dr. Costantini's website recommends actually did the trick. It's been 2 years; I'm still taking it and benefiting from it.

Dr. Costantini's research papers are hidden behind the title Blog Posts on his website.

Although I have found the studies on Thiamine and alcoholism helpful, I personally find it frustrating that these studies focus so tightly on alcoholism as being the problem instead of thiamine deficiency/functional blockage. People who are not alcoholics who are searching for answers assume that the information could not pertain to them because they don't drink alcohol. Many things cause problems with thiamine function; for me it is heavy metals body load, topped off with Bactrim antibiotic. Many pharmaceutical drugs block thiamine function in addition to dietary sources of thiaminase along with tannins, etc.