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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. lostinthedesert

    Toxic mold & xmrv poll

    A bunch of Stuff My MSH has been below measurement threshould every time except once when it was 1 tick above and maybe one other time when the sample was sent to an non-trusted lab and it was 2 ticks above the lowest.- I dont recall the limits for sure but I think the lowest they give is 8...
  2. lostinthedesert

    How to Start a Clinical Trial w/ARV's for XMRV+'s

    Brain lactate by MRS is pretty standard. Not super expensive if not dirt cheap. S
  3. lostinthedesert

    Xmrv not very pleasant news

    We sure are a motley crew and none in the best shape for invasive tests or surgeries. I had more to say but blanked. This thread does have me worried about potential problems with epo and xmrv. What the heck, if i do another round it will start more than a month from now so i have time to...
  4. lostinthedesert

    A Doctor's Wake-Up Call on "Awareness" Day

    Let's roll! I have not seen the pacific in a long long time.
  5. lostinthedesert

    A Doctor's Wake-Up Call on "Awareness" Day

    Geez Doc i was gonna suggest we hire the Hell's Angels to do some convincing but it looks like PR has it covered. We need jackets with PR colors! Darn, i hope those doctors start to listen to you - a miracle but i am hoping. S
  6. lostinthedesert

    Plea from Dr Bell to donate to the WPI

    25 frog skins sent earlier today
  7. lostinthedesert

    Multiple Chemical Sensitivity (MCS) - How Bad

    DOH! *slaps head* PR = Phoenix Rising. Maarten, forgive my comment. I completely misunderstood. More to say but i lost another long post. Now i will try for a nap. S
  8. lostinthedesert

    Multiple Chemical Sensitivity (MCS) - How Bad

    And PR = ? Polyrhythm? Puerto Rico? Are you attempting to deconstruct yours truly? We all have our own particular situations, abilities, access to resources\assistance and immediate priorities. peace s
  9. lostinthedesert

    Multiple Chemical Sensitivity (MCS) - How Bad

    Alas, my only internet access is through an old, beat up cell phone. Runs one app at a time with no cut + paste. I was lucky enough to find an old aftermarket browser that sometimes lets me post. There is no wired internet out here and certainly none out where i usually camp. Sigh, S
  10. lostinthedesert

    Multiple Chemical Sensitivity (MCS) - How Bad

    This is frustrating. I have lost several long posts to this thread in the last day. Must be brief or i will loose this. Hope to get real internet of some sort soon. The biggest thing to remember is that we are all different. We can suggest things but each must try for themselves according to...
  11. lostinthedesert

    Multiple Chemical Sensitivity (MCS) - How Bad

    Raises Hand Had it since '86 when i got CFIDS. It messed up my life a lot. It eased up a bit in the mid '90s. Started to slowly get worse again but really got terrible in 2006. I have been homeless since that time and lived mostly outdoors in the desert. I find that a couple of miles between...
  12. lostinthedesert

    Maddening Creepies in Nerves

    Btw another thing that is known to contribute to itching and maybe even other annoying sensations is a partial blockage in the flow of bile. Dont know if i am spelling it correctly but try looking up cholestasis. S
  13. lostinthedesert

    Maddening Creepies in Nerves

    Lyme and toxic molds are both highly neurotoxic. Sadly many folks with Lyme have difficulties detnxing. Also continuing detox is usually required as the source of toxins is still there. For me mold avoidance, sequestrant detox, treatment of toxin producing Staph, multi b12 + active folate...
  14. lostinthedesert

    XMRV-positive Doctor Begs Us to Fight for WPI

    Sorry but the cat is out of the bag. No use in trying to stifle discussion. People are going to talk and some are going to experiment just like they have every time a new theory comes along, credible or not. WPI is not a wimpy group. they have confronted their attackers. As mentioned, they...
  15. lostinthedesert

    XMRV-positive Doctor Begs Us to Fight for WPI

    All good It is good to me either way. If i took such drugs and got better... *party*. If i became much more ill and/or died, my family who think i am crazy would sue my doctor. They would try to nullify my informed consent. I would love to see a high profile trial where my medical history was...
  16. lostinthedesert

    XMRV treatment trials in Nevada

    While wpi is likely planning some clinical trials, they are in an awkward position until some confirmatory study re Xmrv and me/Cfs makes it to publication. I imagine that their current wave of testing will also be used to generate a list of Xmrv+ patients who may be offered a spot in drug...
  17. lostinthedesert

    CFS etc over on Bad Science

    I believe the administrators will grant library access upon receipt of a reasonable request. I might state who i am and a reason for desiring access. Bet they would open the door. s
  18. lostinthedesert

    WPI USA XMRV testing/study--IT HAS STARTED

    Automated responses from wpi may have gone into some folks spam box. I wonder if a persons doctor matters. The first study used patients of well known docs.
  19. lostinthedesert

    Shoemaker

    I have seen him, read his books repeatedly and discussed with him a bit. My detox on csm was fierce but eased up after a month. I had very nasty Mrcons. The culture technique shoemaker specs is essential. Other cultures had failed to find them. Treating them helped my energy a lot and got me...
  20. lostinthedesert

    Why the increase in excitotoxity on the methylation block treatment?

    GSH by neb or oral causes breathing trouble for me. NAC increases my fatigue. The thing that helps increased neuro symptoms when i use B12/folate is to increase dose/frequency of cholestyramine. Peace, S
  21. lostinthedesert

    Help, bad neck cramps on ldn

    When i last tried ldn, i had bad leg cramps that took two weeks to pass while i continued on ldn. I suggest talking with Skip at Skip's Pharmacy. He talks with many people who take ldn. Another possibility would be to line up a phone consult with an ldn literate doctor if you can't see one in...
  22. lostinthedesert

    neurotoxicity of XMRV class viruses

    Thanks for this. I am still processing. Have you found any mention of viral or viral protein interaction with the trpv1 vanilloid receptor implicated in mcs? thanks again, S
  23. lostinthedesert

    Twitching

    I had these all over in both small and large muscles. In my case neurotoxicity was a major factor. Detox using sequestrants relieved about 90% of the problem for me but during the initial detox the symptoms intensified and then slowly tapered off over a period of weeks. In order to keep the...
  24. lostinthedesert

    My AZT + RAL Trial

    Hopes and an Internet Caution Sue,still hoping you have continued healing. To folks on this thread and this board, i feel that speculating on the identity of an individual is bad form. Outing someone who has obvious evil intent is one thing but people choose to remain anonymous for some very...
  25. lostinthedesert

    "Ask the Social Worker" (who has worked with HIV/AIDS patients for 20 yrs)

    How are today's patients able to afford medications and labs? How many are not receiving treatment or are getting inadequate treatment due to finances? Thanks, S
  26. lostinthedesert

    Phase I/Phase II lever detox problems/genova detoxification-how to improve?

    Don't know if you could tolerate any sort of sequestrant. They will at least reduce reabsorbtion of anything that does make it into the bile. For me the detox was fierce for two weeks and then tapered off over two more weeks. My neuros have been much reduced ever since as long as i take a...
  27. lostinthedesert

    My AZT + RAL Trial

    Many watching Hi Sue, i think many are watching, praying, hoping etc for you. I know i am. This thread has almost seven thousand views so far. I would not be suprised if some among the powers that be are also watching 8) . Peace, S
  28. lostinthedesert

    PEM & the role of elastase, complement C4a and interleukin-1β

    Not just what but when I'm wondering when they took their post-exercise samples. I think that if they took several samples going out at least as far as 48 hours, they may have seen some changes.
  29. lostinthedesert

    Retrovirus in salivary glands from patients with Sjgren's syndrome

    I have those fluid balance problems. Up all night peeing etc. In my case it is due to low ADH. This is a common finding according to dr shoemaker and is in his list of diagnostic criteria. It can be an absolute or a relative low level so osmolarity and adh are tested at the same time. Low or...
  30. lostinthedesert

    XMRV and Mitochondria?

    We need human vertical transmission studies and lab studies on human germ cells. Need to know if and how often this happens. Dear mom i wish i had stashed some of your blood. I do know i got a funky hla-dr haplotype from her but dont know how that relates to xmrv. Peace, S