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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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  1. Seeker

    'Natural' antiretrovirals?

    Thanks forbearance! I thought Shoemaker was just using Actos to regulate leptin levels, but at the site below, it says "Treatment for biotoxins will often incorporate targeted gene therapy using Actos. Actos is a drug approved for the treatment of diabetes that also has a significant number of...
  2. Seeker

    Lyme Disease summary: 30% of PWC have Lyme?

    Um, with all due respect, if a person doesn't produce Lyme-specific antibodies, just looking at bands (on a western blot) would result in a false negative. And the last line of the Joshua222 quote is inaccurate; if caught early (soon after bite), abx treatment has a high cure rate; that is...
  3. Seeker

    Lyme Disease summary: 30% of PWC have Lyme?

    Sure - no prob:)
  4. Seeker

    Lyme Disease summary: 30% of PWC have Lyme?

    I agree w/many of you on this thread! It could certainly be upward of 30% w/CFS do indeed have Lyme, largely because the CFIDS docs weren't very experienced in test-ordering for tick-borne infections, and many/most Lyme Literate docs weren't properly looking for viruses! It really is...
  5. Seeker

    News from WPI symposium: Name change to be proposed for XMRV

    Thanks LJS & others who've commented on this thread that they also have Lyme. I tested + for Lyme (PCR & culture, making no antibodies detectable on Western blot), both kinds of ehrlichiosis, babesiosis, bartonella, EBV & CMV (no XMRV test yet). Had near total remission for 4 yrs then relapsed...
  6. Seeker

    'Natural' antiretrovirals?

    Sushi - Thank you so much for sharing all of that detail - very happy for you! :)
  7. Seeker

    Cheney 'Can structured or certain natural waters be of benefit to CFS'

    Thanks Chris :)
  8. Seeker

    Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

    A friend sent me this video today (of Amy Proal on Viral and Bacterial Metagenome at recent conference in Prague): http://www.youtube.com/watch?v=hO2YXh0ajnk&feature=uploademail Even if only watch from ~5:50 onward, talks about how EBV, Lyme, etc contribute to something she calls...
  9. Seeker

    Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

    "An even vaguely healthy immune system should be able to keep babesia under control, for instance." That's a confusing issue, to me; if a person has multiple (5) tick infections that have gone undx'd and untreated, then I can almost understand how EMV & CMV might reactivate - almost. But...
  10. Seeker

    Low dose Naltrexone

    "You can actually rub the Magnesium Oil right into the area where you are having the Fascia/Tendon pain and see if that helps. Dr. Carolyn Dean, author of The Magnesium Miracle recommends that musicians (guitarists in particular) do this to avoid and get rid of their tendonitis pain from...
  11. Seeker

    Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

    Speaking only as someone who's had chronic Lyme + bartonella, babesiosis, both kinds of ehrlichiosis & viral reactivations of CMV & EBV, the following concerned me: "There were 106 CFS patients who had negative IgM and IgG serum antibody titers to B. burgdorferi by Western blot and ELISA test...
  12. Seeker

    Low dose Naltrexone

    oerganix - I'm right there w/you; I started out getting compounded LDN, but began having dosing issues, so decided to prepare it myself using Revia tablets; worked out well for me that way, tho I did eventually have to stop after 16 mos (uncommon memory issues that ceased once I stopped LDN)...
  13. Seeker

    bit by a tick, suggestions welcome

    Sarah - Really excellent that you've been able to tolerate the doxy; also good that you're trusting your instinct about starting a 2nd abx. Rrrr - I really feel that many LL docs are just plain missing the boat when it comes to viruses, but even the rx antivirals can be rough on liver, etc...
  14. Seeker

    bit by a tick, suggestions welcome

    Sarah - I hope you're able to tolerate the doxy since it works on some of the coinfections that other abx like amoxicillin may not. Did you know that there is a Salt/C protocol for Lyme? I've never tried it; am just mentioning because of your reaction to Vit C.
  15. Seeker

    bit by a tick, suggestions welcome

    Hi Sarah - I'm also someone w/chronic Lyme (plus both kinds of ehrlichiosis, bartonella, and babesiosis - took testing for that 3 times before got a positive - and viral reactivations of EBV & CMV). I pulse green tea and artemisia annua (whole herb) for the babesiosis (tho yrs ago, I did a few...
  16. Seeker

    Cheney 'Can structured or certain natural waters be of benefit to CFS'

    That's the problem w/water where I live - it is definitely fluoridated. LOL dreambirdie - yoga under the sink! :) I would definitely purchase an RO filter if I could afford - I don't like the lugging back/forth either (but am getting my son to do that :) I'm also not crazy about companies...
  17. Seeker

    Cheney 'Can structured or certain natural waters be of benefit to CFS'

    Herbqueen - I'm sure you're right - plastic bottles are probably not good for anyone; there are some that are BPA-free, tho. I started going to the local Farmers Market (50 cents/gal) & using their RO/ozonation filtration system to fill up 2 gallon-sized bottles at a time (no idea if they're...
  18. Seeker

    Cheney 'Can structured or certain natural waters be of benefit to CFS'

    I haven't tried it, Hysterical - but I can say that after listening to Klinghardt lecture (recently, via ustream, at the LIA conference), I decided to go back to bottled for a bit to see if I notice any difference in how I feel, as compared to our Pure2O filter here at home. Klinghardt suggests...