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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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Search results

  1. C

    Is Valacyclovir (valtrex) working for active CMV?

    For CMV a new antiviral is in phase 3 (Letermovir) and has nearly none sideeffects.. the management said, that they plan to get the drug on the market in 2016.. maybe this could safe us? In my opinion, our immune-system is dysregulated and can't fight the virus effectly, we need to push the...
  2. C

    Is Valacyclovir (valtrex) working for active CMV?

    hi heaps, i dont know if it was a iris like reaction.. i cought a cold 3-4 weeks ago and didnt recover really from it. Then about 2 weeks ago while i upped the Famvir 500--> 1000mg/day I had 4-5 days nightsweats and just felt like having the flu. Maybe it would be worth trying 3000-4500mg...
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    Is Valacyclovir (valtrex) working for active CMV?

    hello everyone... I am positive for CMV and EBV.. and thats pretty sure now because i've verified the antibody-tests (IgG and IgM) with a lymphocyte-transformation-test. It shows active Varicella zoster virus and CMV actually.. EBV looks like in latent phase, but i had some slightly positive...
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    New to Famvir ... herx like reaction?

    Hey, so the insomnia dimished... had a 2 day break from famvir because i was so tired and had muscle pains all over my body. Actually im decreasing my thyroid hormones too, but monitoring every 4-5 weeks.. so everything is fine here. My TSH was supressed because i took high doses of NDT (up to...
  5. C

    New to Famvir ... herx like reaction?

    hello together, I have EBV and CMV .. started 6 weeks ago with valcyte and took it 4 weeks (900mg daily). It made me really sick in week 2-4... thats why i quit after week 4. Im working full time and can't stay in bed when i dont feel good.. thats not making it easier.. but that thing here is...
  6. C

    Need some advice.. 5 weeks into valcyte

    hi kati, no i hadn't a loading dose.. and i dont want to have one. I've read that Lerner and Montoya today are not doing this loading dose anymore.. because its very hard on the system. The last bloodwork on 5th august showed everything normal.. liver.. kidneys.. red blood count, white blood...
  7. C

    Need some advice.. 5 weeks into valcyte

    hello everyone, actually im in week 5 on valcyte.. most of time on 2x450mg a day.. sometimes just 1 a day when i dont feel so good. Since 1 week im getting worse and worse.. really tired.. can barely eat something.. my head is in a bad brain fog (which was a lot better 3-4 weeks ago).. my...
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    How long before improvement with valcyte?

    @heapsreal yeah i will add Famvir ass soon i'm going on 1x1 valcyte a day. Lyme is sorted but the last test was 2 years ago .. next months I will do another test that will hopefully confirm, that there is nothing to care about. The weird thing is, that my NK-Cellfunction is very good.. you...
  9. C

    How long before improvement with valcyte?

    hey heaps, 7 years ago, when the cfs started.. i was first diagnosed with lyme. But my blood labs on lyme were not really positive, only 1-2 tests were slightly positive. In the beginning i had the OspC band IgG positive in the immonoblot.. but this was the only band i was positive for. I've...
  10. C

    How long before improvement with valcyte?

    I hope some more will reply.. I startet 10 days ago with valcyte.. but i took valcyte 2 years ago for 5 months. But i could not tolerate a good dosage.. i took in the beginning 2x1 valcyte a day.. but had to reduce to 1x1 a day because i could not handle the side effects or herx or what ever...
  11. C

    How long before improvement with valcyte?

    hello, i would like to know about the treatment with valcyte: 1. which viruses did you treat? 2. which dosage of valcyte did you take? 3. how long did it take to see improvement on valcyte? best regards
  12. C

    Dark circles under eyes after onset of M.E.

    yeah i know that dark circles can appear because of allergy or intolerance to different things.. they are also called allergyc shiners. But in my case, they suddenly appeared with all the cognitive/physical symptoms.. immediatly after onset. I have asthma too and neurodermitis and am allergyc...
  13. C

    Dark circles under eyes after onset of M.E.

    when i did a gluten free diet, i have noticed nothing .. no symptom changed
  14. C

    Dark circles under eyes after onset of M.E.

    hello there, i would like to know, who got immediate onset of dark circles under eyes when got M.E.? If so, what was the cause of your M.E.? Virus? Hormonal? In my case, 2-3 days after rapid onset of M.E. i developed dark circles under my eyes, but only in the corner between eye and nose. I...
  15. C

    What is Dr. Lerner's treatment for CMV (HCMV) and EBV ?

    How did you react to the medication? Was is a struggle or was it ok? Did you have side effects??
  16. C

    What is Dr. Lerner's treatment for CMV (HCMV) and EBV ?

    hello there, i would like to know what Dr. Lerner's treatment is for cmv and ebv. In his article he said, that patients with cmv AND ebv didn't improve with only valcyte?! But they did, when he added famvir or valtrex to the mix. So what is the dosage when he is treating with valcyte and...
  17. C

    Which antivirals/combinations for EBV & CMV?

    Anyone else who can say somthing about treatment of CMV with Famvir?
  18. C

    POLL: Swollen lymph nodes: Did you have these before getting ME/CFS, or did they only appear after?

    I had them too swollen 2-3 weeks prior getting sick :(
  19. C

    Which antivirals/combinations for EBV & CMV?

    thanks for reply... I looked into artemesia products too.. especially artesunate, but in europe i cant order it (im from germany). I wanted to avoid more valcyte because of the bad sideeffects... especially because it is carcinogenic... The pharma should really try to develop some new...
  20. C

    Which antivirals/combinations for EBV & CMV?

    hello everyone, i read in this forum a lot of helpful things. 2 years ago i already made a protocol for my EBV & CMV but this was very mild. It was 450mg valcyte once a day for 4 Months and after that 2x1000mg valtrex for 1 Months.. so total not 1/2 year. My CMV titers came quite down with that...
  21. C

    Rifampicine (Rifampin) and Clarithromycin for Bart and Borrelia

    I would give Azithromycine or Clarithromycine and Doxycycline a try to treat bartonella and borrelia... in your protocol you have only the clarithromycin which is effective against borrelia.. but you should take at least 2 different antibiotics to treat the borrelia.. dont forget to take...
  22. C

    Feeling bad with valcyte... need input

    Edit: The bad feeling is coming and going.. ok i didnt fee well or "normal" since 4 years.. you know what im talking about.. today for example i felt pretty good in the morning, i took my lthyroxin..and everything was ok. things got bad at 2pm... more bad at 4pm... so i went to bed 1 hour...
  23. C

    Feeling bad with valcyte... need input

    hey there, i started taking valcyte in dec. 2013... first i run 3x450 valcyte a day.. but couldnt tolerate this.. so i backed off a little and am now running at1x450mg a day since 3 months... (had to stop in february because of some serious stomach issues). Im really feeling out ouf it at...
  24. C

    Starting to see moderate success on Valcyte against CMV

    hehe no problem, you learn something new every day ;) so please switch the title to something like "moderate success" :)
  25. C

    Starting to see moderate success on Valcyte against CMV

    it is on your own to decide it, do some lab tests and see how high your titers are, what your body is telling you etc. you dont have to cut off straightly.. you can try to reduce the drug more and more to get your body used to the new situation
  26. C

    What is the risk of cancer in humans, if any, with Valcyte?

    I've read it somewhere.. can't find the article now. The dose which was used was VERY VERY high.. and over a long period of time (i think 2 years?) Calculated on a human, you never ever would take such huge doses (i think they talked about 6000mg daily, im not sure).. 2 years on 13 valcyte...
  27. C

    Starting to see moderate success on Valcyte against CMV

    Thanks, i know what you mean. If you want to, you can rephrase it. For me, it is a "little" success because i still have to go on with valcyte to push the titers more downwards. so.. like many of you say.. you need to stay on valcyte for about 6-8 months to get success. i will talk to my doc...
  28. C

    Starting to see moderate success on Valcyte against CMV

    Hello, well i have a short little success Story.. some of you know that i've been sick since 4 years. At first, i was diagnosed with Lyme-disease with Co-infections (Bartonella, Chlam. pneu., Mycoplasma pneu. and eventually Babesia) 3 1/2 years I took several Antibiotics & Antimalarials to...
  29. C

    CMV Infection.. need some input! .. Valcyte

    Hey, sry i was very busy the last 2 weeks. Sometimes i have people around me at the weekend yes, sometimes i go out and drink 1 beer with them, talk, laugh, that's what suppose to keep my faith in getting well 1 day again.. But even, when i stay at home and rest all the weekend, its the same...
  30. C

    CMV Infection.. need some input! .. Valcyte

    hey, sry i cant explain it well (im from germany, my english isnt that professional). The LTT (Lymphocyte-Transformation-Test) is a test which detects how strong your immune system is in contact with the virus. The hight is called "stimulation index".. its a very sensitive test here. Im only...