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.
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Amazing that you were able to have the self awareness to make the adjustments, and to get off the medication and be free of symptoms! Wishing you continued success.
I’m taking shots of Methylcobalamin. I stopped taking the restore gold because NEC can hurt metallization. I am no longer taking Cynacobalamin. I was taking Cynacobalamin orally but my problem is with absorption. I’m Scandinavian which it is very common to not be able to absorb B12 properly.
Thanks for that. You may find this interesting epiphanyasd.blogspot.com/20... . I am using a small amount of NAC but do take a goodly chunk of B12 (oral) as I know I have genetic SNPs affecting B12 and folate metabolism (and it makes me feel better!!). I will take care to keep the B12 up should I increase the NAC (I also have a glutathione absent gene and poor phase 2 detox).
Sounds like you had very good genetic testing. Where did you have it done and any guidance on what to ask for? After reading Dr. Ben Lynch’s book I realized the importance of knowing your genetics. Based on my incredible response to B12, I think I too might have the genetic SNPs effecting this.
Actually it wasn't a good experience. The company missed a whole chunk of the report and it was only because I noticed that two of the results were really obviously round the wrong way and queried it (several times) and they finally sent me a revised report which was much longer as it included a whole section (oestrogen etc) that I didn't know I should have had so hadn't missed. And of the commonly reported 8 SNPs affecting B12/folate metabolism, it only included 2 (and I know now that many others may be involved too - not a simple issue the folate cycle, and I don't have results for any of them.) So I am glad to have what results I have, and it has helped me progress ( in conjunction with other testing of actual effects of the theoretical predispositions) but couldn't recommend them in all good faith, and can't afford to re-do. I only did this in desperation as consultant wouldn't do some bloods for me and this was the closest I could get under my own steam. To be fair, when I had a question recently, a couple of years after the test, they did respond promptly and very helpfully, so things may have improved. The test was Optimal Health Pro from My DNA Health, just so you can look/consider/compare/avoid as you wish! mydnahealth.co.uk/product/o... and I did it through Micki Rose who has always been really helpful and she does still use them. Here is a link to her page, which links to a copy report so you can see what type of thing you should be getting purehealthclinic.co.uk/gene.... Micki says 47 pages in her intro but this is only a sample of 14 and it says it can be 76. Mine was 68, eventually. Best wishes
I read Dr Ben Lynch’s book and did the mail-in saliva test. The report back is pretty extensive, and there’s probably 50hrs of videos available to help review. I just haven’t committed the time to comb through the fine details yet, including the videos…
Take a summer vacation to the sunny South and get a lot of natural D3 Vitamin from the sun!
B12 is one of the first and basic vitamins for all PwP. Here in the States, there are a lot of different B12 with all its forms. My hubby is on Vitamin B12, Liquid, by "Global Healing" (60% methylcobalamin, 20% adenosylcobalamin, 20% hydroxocabalamin).
Despe, knowing how much you research I’m inclined to just go buy the Global Healing but I will do my due diligence first. But may I ask, why the three different forms? Does the liquid absorb better than sublingual?
I did some searching about B12 and decided to go with this triple activated form. Hubby had tried the sublingual one, but I believe this particular B12 is best for him.
Dear CC, everything is error and trial in the PD world.
Just by way of extra information - in Dr Chandy's very large book Vitamin B12 Deficiency in Clinical Practice (just bought, still reading), Dr Chandy states that:
Methylcobalamin is methyl donor to DNA, co-enzyme in the folate cycle and the interlinked homocysteine-methionine cycle. Affects methylation and supply of SAM, impacting on nerve Schwann cell insulation, hormone management, allergy and immune system management.
Adenosylcobalamin is used in the Krebs cycle to generate energy, in the mitochondria. It appears to be the active form of B12 in serum (holotranscobalamin).
Hydroxocobalamin is a stable manufactured form which the body converts relatively easily to the former two.
Cyanocobalamin is highly stable and most can convert, with little risk of reaction to the small amount of cyanide, but for some it is too stable and is removed too rapidly from the body by the kidneys as identified as a 'B12+toxin' molecule.
I was just pondering on adding some adeno myself, if I can find one I can tolerate. Cheers
The Coimbra Protocol is working….. I think. To me, it’s hard to tell. I feel better today on No meds than when dx. I have less severe symptoms now than while being dx. My approach now is, something must be working or I don’t have PD? It’s a very long play. My brother who impatient and has Crohns did CP for 3 months, didn’t see benefit and quit. He was too impatient. It takes a long time to work. It’s more about stopping the disease rather than curing it. Damage has already been done.
You first get a CP doctor. You must do it with someone trained with Protocol. Skype appointments. You have to get your calcium levels, PTH, and kidney function checked every 3 months. (Safety) You take enough Vitamin D to get your PTH to the lowest range level. I take 150,000 iu a day. You have to eliminate all dairy. Certain foods that have calcium like green vegetables are ok in moderation. You have to do strength training exercises at least 3 times a week to keep calcium in your bones. Drink at least 3 liters of water everyday. It’s actually pretty easy once u get used to it.
It might be insightful to see a MDS for an update. They may re-order Datscan FWIW. of course, they’ll discount any protocols that you do that isn’t mainstream
It depends. Most people it would be great. I need injections. I must have a problem absorbing b12. If you think you have a deficiency, best to check before supplementing. Check B12, MMA and homocysteine. The latter two if elevated, even if your B12 is within the range, your deficient. Even if your labs are normal, extra b12 won’t hurt. You have a much higher risk if you don’t eat lots of meat, especially red meat.
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