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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. M

    What to do/take if sensitive to B12?

    Yes! Given how long it took for me to receive a diagnosis (20 years!) and how nearly every doctor I met was totally unaware of metabolism disorders, let alone how to look for them, I'm guessing there are a lot of people with a hidden, undiagnosed Vitamin B12 deficiency.
  2. M

    What to do/take if sensitive to B12?

    Hold up--we're not talking about this being the cause of CFS/ME (if CFS is, in fact a single entity and doesn't have numerous underlying causes depending on the patient). I was simply answering some questions posed by the OP, who struggles from Vitamin B12 Deficiency, as do I. Both of us have...
  3. M

    What to do/take if sensitive to B12?

    I know this post is over a year old, but I thought I'd comment anyway. I haven't read through all of the other comments you've made on this site, so if I say something you already know, I apologize. First, right off: you can take niacin to mitigate the caffeine-like effects of supplemental...
  4. M

    Pain in hands and feet

    The stereotypical ring around the bite isn't always present, no. There is some argument as to whether or not the standard lyme test, which I imagine is the one you took, is accurate. But before going that route, I'd say first see a neurologist and see if there's any other underlying cause for...
  5. M

    Pain in hands and feet

    I should amend that I suppose a slipped disc or similar could produce those symptoms, but usually there's associated back pain.
  6. M

    Pain in hands and feet

    The pain and tingling associated with lyme is peripheral neuropathy. It's actually standard to test for lyme in patients with PN (though most doctors use the standard western blot and not the Elispot). There's really no other explanation for those types of sensations--only a damaged nerve can...
  7. M

    Pain in hands and feet

    It still sounds like PN. There really isn't anything else that will cause those sensations. But I could be wrong, of course. The only way to know for sure is to see a neurologist, who will do an in-office exam and test your sensory perception in those areas, as well as your balance.
  8. M

    Pain in hands and feet

    No problem! I also meant to add that PN itself can cause fatigue by interrupting your sleep. I was told by my neurologist that he believes I have Periodic Limb Movement Disorder (PLMD), caused by my PN. The tiny movements can kick you out of deep sleep and make you feel unrested. He said the PN...
  9. M

    Pain in hands and feet

    What you're describing is peripheral polyneuropathy. You should see a neurologist. I had PN for years and didn't know it. It begins at the tips of your fingers and toes (that's the tip of your peripheral nervous system) and works its way up your limbs toward your central nervous system (your...
  10. M

    neuropathy from taking b12

    The short answer is no, you can't get neuropathy from taking large doses of B12, regardless of the type. The long answer is more complicated. I'll actually be sharing a post very soon that talks about this a little, but it's a long bit of commentary so it's taking a while to write up. Two...
  11. M

    CDSA/P vs Metametrix Gi Effects Profile

    I'm not sure it matters. Last summer, Metametrix and Genova apparently integrated. Here's some information about it on the Genova blog: http://blog.gdx.net/post/2013/10/30/Gastrointestinal-testing%E2%80%94combined-technologies-enhance-clinical-utility-and-patient-results.aspx
  12. M

    14 years of something

    I'm going to share my experience later this year after some upcoming treatments, and hopefully there will be some answers. But your experience sounds really similar to mine. I was sick on and off for 8 years and the only abnormal test results I ever had were various vitamin deficiencies. I...