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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. HTree

    Klimas et al Questions

    Huh, yes Madie I think CDC criteria does not consider band 31 lyme specific, but 23 is. I think you're right. May I ask: what Lab did you use? was it one Rey suggested-- and did you test with any other docs/labs? Thanks! Good luck with treatment Peace, Htree
  2. HTree

    I got in to see Dr. Rey or Klimas in April!

    Ah, thank you so much Hugocfs!!! I did not know they had an e-mail address! I asked but was never told.Goodness gracious, that could have saved a great deal of hassle. Thanks again.
  3. HTree

    Klimas et al Questions

    madietodd, I am a patient of Dr. Rey's too. Also think I might have Lyme; tested with another doctor who thinks I do, my Igenex labs were: IFA : 1:80 titer, reference = or > 1:80 is positive, so I was positive Western Blot IgM had positive Bands: 31 and 41 with 39 Indeterminate...
  4. HTree

    I got in to see Dr. Rey or Klimas in April!

    Hi All, I saw Dr. Rey last year, and have had a terrible time making a second appt. One must see her yearly in person, order to still be treated by her (it's a law, no?) . Has anyone else had trouble with the new Call Center protocol? It's been a nightmare trying to get an appt--waiting for...
  5. HTree

    my famvir trial

    Hi Famvir Friends -- what regular blood testing do you do? and how often? liver, kidney, electrolytes, ...? (and IgG viral check every 3 months i'm told)? I'm trying to decide when to start the imunovir; nexavir, the first modulator I tried, was bit of a nitghmare, but hoping i tolerate...
  6. HTree

    Doctors Find Success Using Retooled HIV to Fight Leukemia

    heapsreal, that's a good question. I"m supposed to start Immunovir at some point too. I'm not sure if it raises actual NK cell numbers or just cytotoxicity (function). I'll try to ask in my next appt!
  7. HTree

    Doctors Find Success Using Retooled HIV to Fight Leukemia

    Thank you OS. Goodness, I have such big big dreams and plans I got teary eyed just now, as I often do, imaging with such hope and anticipation that one day I will get well enough to begin them again. Whew. Such a powerful wish. Here's to all our dreams!
  8. HTree

    Tania Puts In Sterling Effort At The 6th Australian Health and Research Medical Congress.

    Thank you Tania!!:thumbsup:
  9. HTree

    Doctors Find Success Using Retooled HIV to Fight Leukemia

    Certainly those of us with low NK cell function want to increase, to avoid cancer...Scares me to think how vulnerable I am with such low NK function--...Hmm And it's the cytokines that signal to all of these cells, tgat's the way all this immune manipulation happens, and that's how...
  10. HTree

    Doctors Find Success Using Retooled HIV to Fight Leukemia

    AMEN. I get too pissed off if I think about the wasted time. Fortunately, times are changing! These novel immune-modulations are fascinating... Just- inject me with re-programmed NK cells, please!
  11. HTree

    Switching from Famvir to Valcyte.

    Hi All, interesting thread. Just my 2 cents: First, I tried Nexavir-- just a 1/4 test dose injection and had an AWEFUL neuro reaction 24 hrs later. I suppose the lesson is one never knows who will tolerate what. But it was one of those made-me-worse=maybe-permanently life points. Sigh. Greatly...
  12. HTree

    URGENT: Dec 6 Deadline to email the FDA's Ampligen Advisory Committee

    A little late, but done! I hope accepted. Fingers crossed.
  13. HTree

    Join urgent email action to get FDA approval of Ampligen - by Thurs 6th December'.

    A little late, but done! I hope accepted. Fingers crossed.
  14. HTree

    URGENT: Dec 6 Deadline to email the FDA's Ampligen Advisory Committee

    Hi Cort, All, I did a big push for the Aviva contest and unfortunately didn't have energy left for this. Is the 6th the hard deadline? Should I submit today (the 7th)? (is there an FDA URL I can look at for details about this?) Thanks for your hard work everyone! Peace Htree p.s. also, do...
  15. HTree

    Back from my trip to see Dr Kogelnik

    . Hi Scavo86 , interesting, I'm 31...but that option was never menitioned (i've been sick a long time though, though to a lesser degree than the last 2 years).. Now at 3 on the scales. Anyway, I see the other Dr. K/her partner in Florida :) Good luck with Valcyte!! make sure you do the...
  16. HTree

    Back from my trip to see Dr Kogelnik

    Looking at your labs, seems like antivirals at least for HSV 1 is a good idea. And your NK cell function is very low, like mine! Was Imunovir suggested--does Dr. K use it? I too started it all off after glandular fever/mono. Now have EBV, HHV-6 high and low NK cell function (4). maybe...
  17. HTree

    Positive valcyte experiences

    Hi, My two cents is: Famvir and Valtrex are cheap, and prescribed ALL the time for people with cold sores and shingles etc....E.g. it is relatively safe. (I have a friend with HSV 1 oral herpes, and she is constantly on Avs for it, for the past decade plus, with no troubles). AVs do not seem...
  18. HTree

    my famvir trial

    Hi Clive, all, I've just started Famvir as well, though on a much lower dose. just 250mg. Interestingly, I too had a very small rash or something itchy! on my buttocks. As well as back pain, but that started prior to Famvir. Interesting though, I haven't had a rash.skin type things since a...
  19. HTree

    Zadaxin for NK cell boost

    LHCTom, curious if you considered/or have already tried imunovir? are you choosing this other drug over it specifically to treat NK cells? Good luck Htree
  20. HTree

    Famvir or not?

    Hi All, interesting thread. Dr. Rey/Klimas here in the U.S. prescribed just 125mg famvir 2x a day (total 250 mg). I very slowly worked up even to that dose, since i am so sensitive! So been on partial dose of this for month, but taking only full dose for a few days. Nothing bad yet :) My...
  21. HTree

    Trying valcyte again, so far so good

    P.S. SOC, i think one of the reasons we respond differently is how other parts of our immune system are doing-- for example, how are NK cells are. If NK cells also low, than this imbalance makes it even more difficult when the herpes viruses are being destroyed. I believe for example, the...
  22. HTree

    Trying valcyte again, so far so good

    Hey @heaps, hey all! Glad you got the imunovir Heaps. I decided to try Famvir first in the end (though sort of contrary to docs opinion...) So i'm just on 125 mg of Famvir so far, worked up even to that very slowly! I'm at about a 3 energy-level wise so, am taking things very very slowly. I've...
  23. HTree

    Tell FDA why ME/CFS should get special attention by NOV 1

    Detailed comment, done!
  24. HTree

    Tell FDA why ME/CFS should get special attention by NOV 1

    Hi All, I am certainly a procrastinator (one could say I allocate energy to get this done just in time...) ;) Two questions: pls point me to URL where we can view already posted comments? also, second, a concern: as this will be publicly available--does that include our personal information...
  25. HTree

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Hi niall , heapsreal Thanks for posting about your AV use.... I'm interested in the Famvir dosing-- Is that a pretty typical schedule? 1/2 250mg 1xday. then up to one full 250mg tablet 1xday ? Dr. R suggested I take Imunovir before Famvir , but for various reasons I'm concerned about...
  26. HTree

    Drs Klimas/Rey patients ---- recent scheduling problems?

    Yup, same here... Yes, miss Hannah! and Yes, Rey is wonderful,. we shall try to be patient patients (Um, isn't this STORY OF OUR LIVES though, really? what's a little more patience with this disease? :rolleyes:) Here's to Patient Patients! :angel:
  27. HTree

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Hi all, I wonder about Order of things (as i wait for my docs to prescribe Famvir!): Does Ampligen/imunovir etc HAVE to be before Antiviral (famvir/valcyte)? I was told this order Does matter; but I'm not sure why, if there is data to support this... Anyway, i'm hoping i'll be starting Famvir...
  28. HTree

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Thanks Heaps, I appreciate your thoughts You say nexavir and immunovir work differently? I thought both aim to stimulate NK Cell function--i assumed similar mechanism? This not the case? (I haven't read, just assumed-- do you have a particular source of info there to share possibly?). Thanks...
  29. HTree

    Epstein–Barr virus infection induce chronic fatigue syndrome

    I experienced a pretty aweful neuro reaction from Nexavir (intense dizziness, knocked down, visual changes, vertigo...which persists to some degree--worsened autonomic dysfunction still...) After few months of recovering somewhat, though still more dizzy than before-- i'm on to the next-- this...
  30. HTree

    The "Obama Promise" Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome

    Well, this brought tears to my eyes. Obama has my vote for other reasons, but good for him/(the aides) for following up, even if in just this small way. Though I hope and expect more! And THANK YOU Miller family!! I hope we have more opportunities like this! Anyone like to question the Romney...