• 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. U

    Welcome all Blue Butterfliers, former members and everyone else too!

    How was your Christmas? Just before Christmas I bought a new computer so have been figuring things out. How was Gail's surgery? Hope you're doing oK...I'm on medical leave from school right now...wonder what I'll do with my time?
  2. U

    Welcome all Blue Butterfliers, former members and everyone else too!

    Weekend OK, I've been doing better the last two week. Frustrated about Christmas though and everything I Can't do. Sigh, I need to suck it up. I'm just not well enough to shop, attend parties etc. Makes for a tough time of year. How about you? How are you doing?
  3. U

    Welcome all Blue Butterfliers, former members and everyone else too!

    OH good! Thanks for doing this. I occationally checked on this forum...more for research info - it's too big for me otherwise (support and friendship).
  4. U

    Welcome all Blue Butterfliers, former members and everyone else too!

    Here I am Brent!! (upnorth-Gail). So glad you have a space for us to keep checking in on each other...awesome, now I have to earmark it and remember to come.:cheeky grin:
  5. U

    The IACFS/ME Conference in Ottawa: Sept 22-25, 2011

    thanks Cort, I almost feel a little like I'm there. Wish I were since it's in Canada. My specialist Dr. B is there I believe? Following you're twitter feed and am enjoying it.
  6. U

    Article: State of the Knowledge Workshop at the NIH: Pathogens II - Epstein Barr virus and the Enter

    Thanks Cort, this makes a little more sense (now that I've read these articles). I get the feeling that my M.E. specialist is "open" to some of the more experimental treatments, especially if they help patients in practice. But she was quite clear that the EBNA igG being reactive was a sign of...
  7. U

    Article: State of the Knowledge Workshop at the NIH: Pathogens II - Epstein Barr virus and the Enter

    EVB research is interesting to me because Mono either triggered or was the cause of my case of M.E.....but I just can't seem to understand some of it. My M.E. specialist said at a recent appointment that I have a re-activated EBV infection. This seems to be what Montoya treats as well...
  8. U

    Article: 2010 ME/CFS Research Overview Pt III: Immune and Pathogen Studies (excluding XMRV)

    another great summary Cort. Your ability to summarize a slew of research in a readable fashion continues to be appreciated (by me anyways) As you well know, having the energy and patience to sort through each new study can be draining, so it's nice to see it all layed out like this. Thanks...
  9. U

    Article: The Patient Side: WPI Clinical Director Dr. Deckoff-Jones Talks

    Thanks for doing this interview Cort. We are so lucky to have a medical reporter like you doing this work.:cheeky grin:
  10. U

    Low Neutrophils

    I'm one of those with frequent mild to mod. neutropenia. My CFS specialist speculates that may be due to chronic viral infection.
  11. U

    Spanish XMRV researchers to report Dec 9 on immune dysfunction

    Interesting finding, I can't wait to see (read) more about this. Just because I'm bored I looked at my old lab for a flow cytometry done in 2005 on lymphcytes and it seems I fit the pattern. The three subsets I was low on were the three CD8 categories. CD8CD11B% (normal 23-91) I was 20...
  12. U

    JAMA Editorial, Oct 20 2010

    Thanks for posting the full paper. It looks to be well written from what I can tell. I was hoping someone would have access to it.
  13. U

    Article: NIH Steps Up to the Plate - Picks Pathogen Ace to Lead Major XMRV/CFS Study

    Cort, any idea what definition they will be using for CFS/M.E. patient group??? Cort, do you have any idea or have you read anything about how they will define their CFS/ME patient group? I think this might be really important - patient selection. I'm just super curious how they will define...
  14. U

    Is low white blood cell count normal in XMRV???

    I agree dannybex, it's usually the treatment in cancer e.g. chemo, that cause the neutropenia. (btw, my neutropenia is not as a result of any drugs - as I'm not on any drugs, but it is a good point). I wonder if those of us with M.E. and the low WBC or neutropenia had a viral onset? Just...
  15. U

    Is low white blood cell count normal in XMRV???

    Hi grant107 - that's really concerning!! Although me and my symptoms have been dismissed by Drs. before, Neutropenia is a clear sign that something's wrong. If your neutrophils drop too low an infection can kill you!!! That's one reason why they monitor cancer patients under treatment so...
  16. U

    Is low white blood cell count normal in XMRV???

    For the last 5 years with M.E. I have frequent low WBC, usually neutropenia. This last time it was low enough that they told me to be careful if I got a high fever as my body doesn't have a good fighting capability right now. If it continues this low I will see a hematolotgist although I...
  17. U

    famvir stronger then valtrex??

    Thanks for the ideas heapsreal....I'm not sure if my Dr./specialist would go for an antibiotic, but I'll ask her about the immunovir. Thanks for the info consuegra, I had so much trouble finding much on famvir/famciclovir and ME/CFS. I may try again, but even at 1/2 250mg pill two times a...
  18. U

    famvir stronger then valtrex??

    Hi nventor, I couldn't find much at all about the use of Famvir or famcilovir (same thing) in M.E./CFS. I know people who've tried Valcyte (and had some good improvement - although not a cure) and Dr. Learner treats with valtrex and occationally famciclovir. Funny, my tests seem to run with a...
  19. U

    famvir stronger then valtrex??

    Hi heapsreal, I'm on Famciclovir which is the same as Famvir...low dose - 250mg twice a day but now went down to 1/2 pill two times a day for a few days. Severe nausea and headache. I don't get nausea with M.E. so it is most definitely the famciclovir. When I tried valtrex I also had...
  20. U

    famvir stronger then valtrex??

    Thanks heapsreal.... Sounds like it's had a positive effect on you. I'm having some major side effects unfortunately even on a low dose. I don't know if I'll be able to stick it out, but I'm going to try. I have a very "immune" or "viral" case of post infectious M.E./CFS so my Dr...
  21. U

    famvir stronger then valtrex??

    Which symptoms did you find relief from? Or was it overall energy?....just curious.
  22. U

    famvir stronger then valtrex??

    I may try a round of antivirals. My specialist gave me famvir to try. I tryed valtrex a couple years ago for 3 months but didn't notice much difference. Harpsreal, are you the only one here who's tryed famvir (called famciclovir in Canada). How long have you been on it? Do you notice a...
  23. U

    CDC XMRV Retrovirology Study on CFS Published

    This is just beyond depressing....Is it a fact that the other paper is now "not accepted"
  24. U

    Dutch article about people homebound with CFS

    Maarten, I have a friend in the UK with M.E., however she's very lucky as it's a mild case. She has to "hide" the fact from employers etc. that's she's ill due to stigmatization. Luckily, she can still work. For many of us that's not the case. If I see certain names on research studies, I...
  25. U

    Dutch article about people homebound with CFS

    frustrating How frustrating....I have no interest in reading the article especially when I read the words "somatic manifistations"- how are sore throat, fevers, severe muscle fatigue "somatic"....I wonder if any Dr. would refer to the symptoms in AIDS, MS or the Flu as "somatic...
  26. U

    Is low white blood count (leukopenia) really exclusionary for CFS?

    Hi heapsreal....I've had flow cytometry done a few times and my cd cells seem to be opposite. They were VERY low, infact I think CD8s were almost non existant? I guess this means that they can go either way with M.E./cfs?
  27. U

    Is low white blood count (leukopenia) really exclusionary for CFS?

    Ahhh, it's nice to see a discussion on this here. While most my labs are usually normal, about 2 years into the illness my flares/relapses/crashes always coincide with leukopenia and neutropenia, sometimes into the moderates, but more often into the mild zone 3.4-3.8 leukopenia. I hadn't seen...
  28. U

    lymphocytes

    Not sure if this fits here, but when I'm crashed or relapsed, my WBC drops to mild leukopenia and neutropenia.....I'm wondering if I'm the only M.E. cfser with this issue.?