I haven’t posted in a while because I wanted to make sure good results would last and not placebo. I’m 41 year old male that was dx with a Datscan on Dec 26, 2018 at age 38. Stiffness dominant with gait issues. I’ve been off and C/l a few times with little (placebo) or no results.
I’ve been on The Coimbra protocol since April 2019. I haven’t progressed so I believe it’s working. In the fall of 2020, I started Mannitol and some B12 shots I got in Mexico about the same time. I noticed I improved quite a bit, but my kidneys were really giving trouble. Mannitol is a Diarrhetic. The Coimbra protocol and Mannitol really damaged my kidneys. I thought it was the Mannitol causing the improvement but I had to stop it and also the B12 shots. I had my blood B12 levels checked in December 2020 and I was off the charts high.
In the spring of 2021, after my kidneys recovered I started the Coimbra Protocol again. I thought the B12 shots were also contributing to my kidney pain so I didn’t continue. Looking back I gradually got worse, mostly mental. Fast forward till the fall of 2021, I had my B12 levels checked again and I was 321. I have it elevated homocysteine. By trial in error, all of the supplements that lowered homocysteine we’re ones that helped the most without knowing it. I didn’t know at the time but that’s not normal, the drop off of b12 levels. B12 is stored in your liver for 5 years. It should have been much higher. (I’m not a vegetarian at all)
The reference range of B12 is 200-1200 usually. 200 is criminally low. If you have Parkinson’s, must not be below 500. To me, the higher the better. People who have high homocystine and MMA levels can easily be deficient in B12 and still be within the reference range.
B 12 was discovered in the 1920s. At the time, more people died from B12 deficiency than even polio. The doctors gave people organ meat because they hadn’t developed B12 synthetically. In the 50s they develop cyanocobalamin. It’s B12 made with a tiny bit of cyanide to keep it stable. That’s what most B12 supplements are. For a long time B12 shots were overused. They kind of got a bad name, most doctors said the improvement those they gave B12 was placebo effect. Cyanocobalamin is a form that your body has to work to use. There are much better forms of B12, Methylcobalamin is the best. Of course America doesn’t use this form, which makes no sense. It’s like we’re still using cyanocobalamin, like rotary phones compared to iPhones.
In January 2022, I started looking into my B12 after talking to my brother. He told me I shouldn’t have lost that much B12. I read a book called “Could it be B12?” I highly recommend reading the book. I started taking B12 shots from my neurologist of cyanocobalamin. It definitely helped but not a whole lot. I tried to find methylcobalamin in United States. My sister is a pharmacist and couldn’t even order it. I went to perniciousanemia.org to get some Methylcobalamin. When I started those shots I had extreme anxiety and felt terrible, My Parkinson symptoms were much worse when starting. I believe it was caused by refeeding syndrome and the lack of methyl folate. I stopped for time and restarted with some methyfolate. I can’t believe the results. Woke up this morning feeling as good as I have ever since being diagnosed.
I’m still experimenting with the B12 and methyl folate. I’m not an expert by any means but reading the book could really help you.
Before supplementing B12 I would have your B12, homocysteine and MMA levels checked. If you’re homocysteine or MMA levels are elevated, you could be B12 deficient, even if it was within range. Those two amino acids counteract B12. I felt as if I was getting early dementia, add anxiety 24-7, which can happen with a B 12 deficiency. All of that gone!
I am completely off Parkinsons medication and feel better than when dx. I took Celexa the day of my Datscan which can skew the results. My Old neurologist said it would not skew the results but I’ve read it can. Who knows? But I know I feel a lot better. Be careful with Methylcobalamin. If you’ve had a deficiency, especially long-term you could have some scary early side effects . It’s similar to what happened to starving people that you start to feed again.
Sinemet MG Conversion to Zandopa MG Conversion to Madopar. Synergy between Mucuna Pruriens & Withania somnifera. B12/thiamne thoughts...
Homocysteine: friend or foe? 
What caused my Parkinson's
