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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. AliceZ

    Valcyte - How long have you been / were you on it?

    Sojourner- I have been taking Valtrex and Valcyte for 18-ish months for EBV, CMV and HHV6. For the first 6-ish months I got significantly worse and felt terrible, but have slowly improved since then, to the point where I am now better off than I was before I started the medications, but it's...
  2. AliceZ

    Valcyte - How long have you been / were you on it?

    I have been on Valtrex and Valcyte for EBS, CMV and HHV6 for about 16 months now as per Dr. Martin Lerner's regimen. I crashed really badly after starting the regimen. This lasted about 6 or 7 months, but I have been making steady improvement ever since, and am now higher functioning than I...
  3. AliceZ

    Valcyte (plus) Update

    If you meet their income criteria and don't have insurance coverage for the prescriptions, you may be able to qualify for the medication for free or at a reduced price directly from the manufacturer. You and your doctor need to fill out a bunch of stuff and you have to test positive for the...
  4. AliceZ

    Cold-Fx and Immunity-Fx for Illness Prevention and Treatment

    I haven't seen these supplements mentioned on this site so I thought I'd bring them to your attention. I have been using Cold-Fx for a couple of years now and Immunity-Fx for 6 months or so, and find them very helpful at preventing illnesses. Cold-Fx is the "official" cold remedy of the...
  5. AliceZ

    Week 12 of Valcyte

    I, too, have found a big drop in my need for supplements, as well as a huge drop in my chronic Ear, Nose and Throat infections, since I started the Valtrex/Valcyte combo. I am glad to hear that you're seeing these improvements, too, undcvr, as I hadn't seen anyone else describe them and was...
  6. AliceZ

    Week 10 on Valcyte

    Undcvr- I gave my doctor a copy of Dr. Lerner's May 2010 paper (it can be accessed for free on his website) and I can't recall exactly the length of time he describes folks being on the antivirals but it's something like 2.4 years average. I've been on Valtrex and Valcyte for about 5 months...
  7. AliceZ

    HELP!--advice wanted regarding TEETH & GUMS

    With regard to gum disease, bleeding gums, and receeding gums, I used to have those problems. However, I have been taking Valtrex and Valcyte for several months for EBV, CMV and HHV6, and a huge, totally unexpected effect of the medications has been a significant improvement in my Ear, Nose and...
  8. AliceZ

    Canadian Consensus Clinical Case Definition for ME/CFS -Important to Read

    Thanks! Looks like it'll be an interesting read.
  9. AliceZ

    Article: A Chronic Fatigue Syndrome (ME/CFS) Patient Returns: An Interview with Marth

    I just became aware of this interview tonight. It was a great read!
  10. AliceZ

    When do you know you are ready to go back to work (full-time)?

    Thanks for the suggestion about Martha Kilcoyne. I'm going to check that out.
  11. AliceZ

    When do you know you are ready to go back to work (full-time)?

    I feel pretty lucky, actually. I had the opportunity to prevent the full-out disorder (but blew it) and now my kids have the same opportunity. Both my daughter and I are on a treatment plan that has a good chance of giving us much-improved functioning. I think I've learned my lesson well...
  12. AliceZ

    When do you know you are ready to go back to work (full-time)?

    Jeffy- I think the part-time idea may be the best for your long-term health. It's too bad that in doing so, you can't get the pick of the best jobs, but being able to keep a part-time job beats having to quit another full-time job later on. Like you said, you're still young. You still have...
  13. AliceZ

    VIP Dx/WPI Serology (Antibody) Test Results

    Alexia- That sounds painful. I hope they figure out an easier was to find virus in tissue.
  14. AliceZ

    When do you know you are ready to go back to work (full-time)?

    Jeffy- It sounds like to avoid moving in with your parents you might just have to try working and see what happens, but in order to avoid a relapse maybe try to find a part-time job or one with flexible hours or a work-from-home job. Maybe you'll have to settle for a job outside of your...
  15. AliceZ

    When do you know you are ready to go back to work (full-time)?

    Jeffy14- Your functioning level is so far above mine that it's almost impossible for me to conceive of at this point. I wish you the best of luck and am eager to see what kinds of replies you get to this question. My experiences with CFS and working full-time were disastrous and contributed...
  16. AliceZ

    VIP Dx/WPI Serology (Antibody) Test Results

    Yea, I figure that the negative test results just mean "maybe, maybe not". So I wait. In the meantime, I am on antivirals for my EBV, CMV and HHV6, and hoping for the best. I didn't start taking the antivirals until after I had the blood drawn for the XMRV test, so the antivirals didn't...
  17. AliceZ

    Please Tell Me Your Valtrex + Valcyte Story

    Week 16 on Valtrex + Valcyte Well, it's been a couple of weeks since I updated this thread, so I thought I'd better get going. Tomorrow will be Week 16 of my daughter and I being on Valtrex + Valcyte. At long last we both bottomed out in energy levels, probably about 2-3 weeks ago, sometime...
  18. AliceZ

    VIP Dx/WPI Serology (Antibody) Test Results

    I was Negative by both culture and serology, with moderate to severe CFS.
  19. AliceZ

    Please Tell Me Your Valtrex + Valcyte Story

    Hi, Julia- Wow, what a coincidence. I just read your blog a few days ago. Thanks for doing it. I found it very informative and inspiring. It was referred to it when I was reading one of the other threads on this site (I can't remember which one.....). I'll be eager to read your new blog...
  20. AliceZ

    Pacing with a Heart Rate Monitor

    Sallysblooms- Thanks. I'll check that out. The more I think about it the more I like the idea of having both kinds of monitors.
  21. AliceZ

    Pacing with a Heart Rate Monitor

    Sallysblooms- What is it called? Have you noticed whether it's accurate if your hand is cold? I have this biofeedback game that uses finger receptors to measure pulse and heart rate and I sometimes have a hard time getting it to pick anything up, as I have poor circulation and tend to have...
  22. AliceZ

    a quick hi , how are we all going, me first

    Hi, you all. I've tested positive for EBV, CMV and HHV6. I am currently taking the antivirals Valtrex and Valcyte, which I have been on for 12 weeks. I have not yet showed improvement, but am very hopeful, as it seems most folks get worse on these medications before they improve. I am also...
  23. AliceZ

    Please Tell Me Your Valtrex + Valcyte Story

    I am now at 12 weeks on the Valcyte plus Valtrex. I continue to be headed downhill, as does my daughter. If I don't bottom out soon, I will drop the Valcyte to 2 pills a day (900mg) at either week 13 or 14. I am concerned that if I don't slow down the downhill trend I will be unable to get...
  24. AliceZ

    Pacing with a Heart Rate Monitor

    OnlyResting and Helen41- I haven't yet tried the monitor in public but suspect I'll try turning off the alarm and just looking at it frequently. I agree with you both that pacing and patience is key to the monitor helping us out. I am by nature a slow, patient person, and have a real...
  25. AliceZ

    Pacing with a Heart Rate Monitor

    Shannah- I hate the flavor of water and have to drink lots of it for the medicines I'm taking, so I tend to chug it down. I've noticed that when I drink it more slowly and take breaks while drinking I can control my heart rate better. I haven't really paid attention to the eating part but...
  26. AliceZ

    Pacing with a Heart Rate Monitor

    OnlyResting- I suspect you're right that the risks are relatively small given the stuff we're exposed to pretty constantly, but I'd sure like to see some research on the matter. I bought this thingy that you attach to your cell phone that's supposed to divert the EMF's away from the head for...
  27. AliceZ

    Pacing with a Heart Rate Monitor

    OnlyResting- It seems like the AT calculation formula is a good general guideline as a place to start, and then to modify as our own unique physiological characteristics warrant. I can barely leave the house right now for doctor appointments and lab tests; getting any kind of tests would be...
  28. AliceZ

    Pacing with a Heart Rate Monitor

    UrbanTravels- Interesting. I wouldn't have thought of that. One of these days when I've got some time (hahaha) I need to spend a little time looking into this OI and POTS stuff. There's so much information out there we can use to help ourselves, sometimes it's just a matter of figuring out...
  29. AliceZ

    Pacing with a Heart Rate Monitor

    Sallysblooms- I'm not sure what kinds of options there are out there, but I got the monitor with the transmitter because I'm really sensitive to tight constricting things and thought if the wrist strap on a wrist-only monitor was constricting in order to pick up the heart rate I might not wear...