Parkinson's Disease Tulip


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Old 05-27-2012, 02:34 PM #1
Peony Peony is offline
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Default MTHFR, B12, Methylfolate, and 23andMe

I know the MTHFR & B12 issue has been discussed here before, but I still have questions. Has anyone checked your 23andMe data and found you were at risk? I am ("compound heterozygous"). Also, has anyone tried taking methylfolate and B12, and if so what were the results? Any general health improvement or PD symptom relief?

My GP doctor (like many) wasn't aware of this issue, but had me tested & said my test levels were adequate (Web sources say not necessarily). My neurologist was more informed, has ordered more tests for deficiences, and will write prescriptions if so. Since I've already been taking OTC Solgar Metafolin & Methyl B12 for several weeks, how long must I wait before taking the new tests? Apparently they linger and I want the tests to be accurate so I can get the prescriptions.

I am finding conflicting advice about what the results really mean, the type & amount of supplements, and dosage timing (empty stomach or with meals?). Anyone worked all this out yet?

With heartfelt thanks.

p.s. If you're on 23andMe, I recommend checking your data for this, as there is a possible connection to Parkinson's & other conditions. Let me know if you want more info on how to do it.
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Old 05-27-2012, 06:53 PM #2
lindylanka lindylanka is offline
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I believe that the only thing you have to watch out for with testing is that you are not supplementing with folate as this can mask the results. There is some measure of argument as you have probably discovered over what levels are the 'right' ones, with advice differing from country to country. The Pernicious Anaemia Society (PAS) website seems to indicate that these levels may be misleading in people with B12 def. or Pernicious Anaemia and that much higher may need to be reached for therapeutic results and sustained repair of any existing damage. There seems to be little info about, and a lot of ignorance of PA among people who think that one treatment fits all. The evidence of people with PA seems to differ. I am in the learning stage with this too!
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Old 05-29-2012, 12:01 PM #3
Peony Peony is offline
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Thanks, Lindy. Yes, it is true that taking folate will mask results, but what I need to know is how long it takes to clear the system. One thing I saw somewhere seemed to indicate it can be a very long time (weeks or months?). It's all so new & complex, like everything I try to figure out. There is some evidence in the literature for a linkage to PD, so it would be good, esp. for those of us who do have the mutation, to figure it out if possible.
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Old 05-31-2012, 06:24 AM #4
wordsmithy wordsmithy is offline
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I have a doctor who is quite knowledgeable about this. He tested me for this as part of his overall strategy for figuring out my tremor, found I had the mutation and promptly started me on B12 and Thorne's 5-MTHF (L-5-Methyltetrahydrofolate) 5 mg daily. I read somewhere about problems if taking too much of 5-MTHF and asked him at my last appt. He said, emphatically, don't worry about taking too much, the worry is that it is too little. Sometimes I give 10 mg.

I also make sure the multivitamin I take does not have the regular from of folate in it (which can be detrimental). Dr. Mercola puts out a food based one.
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