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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. citybug

    How do you camp? Mold avoidance trial

    What do you mean? better to sleep in hotel in bed, or on the ground, or regular blankets? Or detox will make sleep hard to get?
  2. citybug

    How do you camp? Mold avoidance trial

    Thanks everyone. I really appreciate the specific sleeping bag tips, Target and everything else. We'll afraid we'll cross contaminate driving cross country and in one of our cars, also takes time out of the trip, but flying is hard.
  3. citybug

    How do you camp? Mold avoidance trial

    In the planning or hoping stage for a trip west from the east coast for a couple weeks with one moderate-severe ME, an MCS friend who can drive, and a lyme/ME friend. Since it would be June or later where can we go? Been reading the location boards. The deserts seem clearest. AZ, NM, NV or...
  4. citybug

    Finding a crowdfunding platform

    I wish there was a public thread bumped up with that info. Thanks!
  5. citybug

    Finding a crowdfunding platform

    I wound up looking at this group because there is not much available except the Lipkin interview. I wish there was a post in news section with an update about how much has been raised. Or I was looking for a facebook page about the various donation possibilities. I'm pretty sick so it took...
  6. citybug

    Finding a crowdfunding platform

    I like the ease and updates of the crowd funding sites so I looked at some. I don't think rewards are as important, could be bumper sticker. Jen La Brea gives personal updates, a sense of being involved. Kickstarter doesn't do causes, can only be used by creator. The missionfish /paypal...
  7. citybug

    Urgent - we need a name

    Maybe you've found one. Other non exciting names: I prefer one where you can tell which project, unless you are going to be an overall funding group. I like the ones with Million above and Hunting on other thread. ME Patients for Columbia Microbiome Study ME Patients for Lipkin Team...
  8. citybug

    Members! Can you help us find video?

    I am just catching up reading stuff, but what i like about kickstarter is someone can just go on with a talking head video and give appeal or update- a patient, doesn't have to be high tech, immediate personal connection.
  9. citybug

    Members! Can you help us find video?

    http://cfsknowledgecenter.com/expert-assistance.php maybe it's here, a bunch of klimas videos lower on page and in library. I think dreamsatstake's videos are great on her website.
  10. citybug

    emf bed canopies

    i got fabric to use as sheets, or a poncho as it is less square footage.
  11. citybug

    ME CFS conference in New York 20th November 2013 relating to treatment .

    Many of these talks were synergystic, and too fast for me to take notes and look at slides, so some things are merging in my mind as to who said what.. If slides are posted they will have a lot more detail. Would like to hear it all again. I was also effected by the wall to wall carpet. I...
  12. citybug

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I just watched that too. Slightly above normal he says is good. He thinks nagalase might regulate HERV activation. Maybe the low levels that people take keep nagalase from dipping too much for some? He also said Shoemaker's CIRS patients were indistinguishable from his patients.
  13. citybug

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Could the inflammation that cause some people to go off gcmaf be related to mold mycotoxin exposure in the home re Brewer's study? Do any of the gcmaf docs use Shoemaker's Ca4, TGF beta-1 or mmp9 to track inflammation?
  14. citybug

    Detection of Mycotoxins in Patients with CFS

    I happened to start Mold Survivors book right before this. One of Shoemaker's complaints is that most doctors don't do a history that asks about water damage, so it sounds like they did a very thorough history here. I read eric's stuff and didn't think I was exposed, but now i am thinking there...
  15. citybug

    Who's Had Their Coxsackie B Virus and Echovirus Antibody Titers Tested at ARUP Lab?

    What is usually the issue with tolerating the equilibrant? I started taking some, 2 up to 3/day. I didn't notice anything while taking, but now can feel a previous sore spot in my gut. Does it cause inflammation? My gut issue also could be food or cutting back on tumeric related. Thanks.
  16. citybug

    Lipkin and Hornig go hunting for ME/CFS pathogens

    Is there any list of the 18 viruses they looked for?
  17. citybug

    Lipkin and Hornig go hunting for ME/CFS pathogens

    Hi, Simon thanks for report. Are the first results going to be published just about general viral testing or have they actually started stage 2? Stage 2 is what I'm waiting for. I hope they keep some of the patients who are positive in stage 1, at least as controls. If we have immune...
  18. citybug

    Artesunate - Cheney dosage and benefits

    I am taking famvir, but have sore kidneys. Thought I felt a little better after feeling worse, still have some very irritable days, really not sure any better. I would like to take artesunate. When I tried !/2 a capsule I felt pain all over, like flayed alive on a few tries. So I think it...
  19. citybug

    Would Valcyte work for PWME's who don't have CMV?

    Are there any doctors with studies on famvir and me/cfs? I'd like to see the doses (at 110 lb). The general info I see on other sites is not for long term.
  20. citybug

    Anyone experience tremors?

    I've had them, especially when overdoing it. I'm sorry I can't remember what natural help read recently. Is it related to dopamine?
  21. citybug

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I want to start gcmaf, and have started valtrex. This have given me some agitation, like someone described with gcmaf yogurt. Is there anything people are taking that sweeps up the toxins? Also I wonder if LDN has any correlation with success with gcmaf? Is anyone taking both?
  22. citybug

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Dr. Teitelbaum has a lot on his website about diflucan for sinus issues. Also my uncle has very bad sinuses from sick building. I was reading reviews of products on amazon and found alkalol, $7.99. This has essential oils. Some users said they add some drops to their saline rinse, which they...
  23. citybug

    Maf314: Double check your yoghurt maker temperature!

    he says: strains of bacteria produce the very same enzymes, i.e. beta-galactosidase and sialidase used to make chemical GcMAF (p 14). plus colostrum for protein. I found these mentions in pubmed, but maybe other bacteria also make it. If yoghurt is good for immune system anyway. I think we...
  24. citybug

    Cystitis or Crohn's or ????

    I had a horrible time with a sigmoidoscopy reacting to the meds, trying to check into hospital, getting compazine, passing out on subway, so not anxious for colonoscopy. In fact had parasite then and was one of elements starting me/cfs. Have done the urine samples often negative. I'm...
  25. citybug

    Cystitis or Crohn's or ????

    I've been to a lot of doctors so time to ask the real experts. I had kidney stones last Nov. and Feb.(with kidney infection) then after the stones had continuing pain in spot in lower right abdomen. Last spring gyno said she thought is was a full cecum. Over few months the pain in this spot...
  26. citybug

    MAF 314

    I'm also interested in how much of it you have to eat a day. If it is stronger than the chemical maf why aren't there more side effects? Are any of the people doing the yoghurt in touch with others from their class, or other Cheney patients? Are some people having the long term set backs of...
  27. citybug

    Judy Mikovits has been arrested

    This is not a fact. Science is following up allegations by a "snarky blog" with questions most of which have already been answered. Anyone can make allegations as we see here. No one uses the word misconduct. Also if you read the text in the original study they were taking a closer look at...
  28. citybug

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Some things de Meirleir said at Enlander's Mt. Sinai conf (if I got it right). Intestinal bacteria produce nagalase, as well as HIV and cancer cells. Sickest have much higher levels of LPS polysaccharides from intestinal bacteria. LPS leads to NO (ONOO). Gcmaf and LPS use competing...
  29. citybug

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Thank you Sushi. I thought it was more like a few to several people who were stuck in a bad place from reading the thread.
  30. citybug

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    How many people here are still in bad relapses from IRIS after doing gcmaf?