• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. W

    Is it a new disease or its CFS ?

    T
  2. W

    Is it a new disease or its CFS ?

    Omar... I have continued to have issues and started worrying about hiv again. Anyway I checked TheBody expert advice prevention and their responses. On 12 week tests and 90 day tests Dr Wohl advised that the experts got together and discussed and standardized their answer to reflect the CDC...
  3. W

    Is it a new disease or its CFS ?

    Did everyone see where the body changed recently back to 180 days for a conclusive hiv negative result?
  4. W

    Is it a new disease or its CFS ?

    That last post is very scary, while certainly possible. I believe nature has just as many opportunities for bad viruses. I just read about hanta - 20 different types. I almost had a normal day - 98% but then went significantly backwards. Very bad eye pain and gastro stuff. Anyway - new dr...
  5. W

    Is it a new disease or its CFS ?

    Sherezade, happy to hear that you are ok from a dr's perspective. I am hovering around an 80 to 90% normal, but recently my new issue appears to be a form of ibs. I read up- apparently this is normal after a gastroentestinal issue, like an enterovirus. My problem is like everyone - I am...
  6. W

    Is it a new disease or its CFS ?

    Has anyone tried to discuss with the immed.org? They seem like they are interested but offer limited ways to get actual help. Their symptom list was helpful My appt was another bust. Apparently I just need to eat better and exercise more. Uggh. Trying not to complain as I seem to be better...
  7. W

    Is it a new disease or its CFS ?

    My friend didn't say if his was from a sexual experience. But I would guess not due to his age but you never know. As far as my guess of what this diseases is. Virus first, then probably entero, whomever listed that at the beginning was amazing. I went to the overall site, then researched...
  8. W

    Is it a new disease or its CFS ?

    So - I am doing better. Basically back to normal the last few days. Also got the results back from my latest tests - all negative. I guess it is good. I am going to a new infectious disease dr. in 2 weeks. A colleague of mine out ofthe blue had a similar virus ( diiferent city) they have him...
  9. W

    Is it a new disease or its CFS ?

    I have a suggestion - I think we all need to create a symptom template and degree scale. Example no appetite, 4 months, level 4 ( constant) Then potentially a % scale of normal. Next I would suggest a list of diseases checked along with positive, negative results, Essentially, to...
  10. W

    Is it a new disease or its CFS ?

    So... I think I have found my issue. Cocksackie b All symptoms fit from start to finish. Recently, my ribs started to hurt and read it was costochondis which is usually triggered by cocksackie b. Had any one read up on this disease
  11. W

    Is it a new disease or its CFS ?

    Members, why are we so fixated on hiv or unknown viruses? After reading about enteroviruses, symptoms, 71 different types, how it is transmitted and viral meningitis. An enterovirus that broke the blood brain barrier and caused chronic viral meningitis seems more plausible than the other...
  12. W

    Is it a new disease or its CFS ?

    Thank you for the excellent reference to the enteroviruses. My progression in this disease has been thinking I was fine just nerves, to thinking I had hiv, to an unknown issue consisting of htlv and others. But after reading the enteroviruses that are capable of passing via saliva and htlv...
  13. W

    Is it a new disease or its CFS ?

    Hey guys - for those that have had this for more than a couple of years. Has anyone tested cd4, immune system stats? Trying to see if this will be like a flu for a while or if it will impact us like hiv? Teedot... What remaining symptoms do you have?
  14. W

    Is it a new disease or its CFS ?

    Extreme tiredness, headache for 3 days, difficulty sleeping so far.
  15. W

    Is it a new disease or its CFS ?

    I am at about 5 months. Or about 4 months with symptoms. Yes I think I did give what ever this is to one person by accident. At first I tested for all the normal stds etc, then dr said I was fine and it was the pre-emptive antibiotics I took or anxiety. More than one told me that. Then at...
  16. W

    Is it a new disease or its CFS ?

    Hello, just found this site from another friend So my sad story i received oral then 2 - 3 weeks later went thru flu like symptoms. Ended up testing for everything, have multiple negative tests after 3 months I was convinced it was hiv, but... Now I am convinced it is some thing else that is...