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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. C

    Long term Valtrex users curious

    I posted my story here years ago ... link below ... I was never bedridden and had a semi functional life but was almost borderline suicidal as life was a haze. Probably a 6 at my worst. I didn’t know what cfs was then and took Truvada for safety as I live in nyc and was sexually active...
  2. C

    Long term Valtrex users curious

    I started off with Truvada for a few years (PreP) and my symptoms slowly improved after a year. I eventually went to a cfs specialist and tried valtrex and valcyte. I couldn’t handle all 3. I went off all except Truvada and recently added back in valtrex and feel better. I’m 95% cured
  3. C

    There will never be a cure.

    some of us have been 99% cured. For me it was a year of antivirals
  4. C

    Anyone here used HIV/AIDS treatment for CFS?

    I’ve been doing pretty good for years. On Truvada for 4 or 5 years. I recently switched to the new version descovy. Lately I noticed some fuzzy blurry eye issues and minor tiredness which I can’t correlate to changing to descovy. I’m able to run 4 miles daily so nothing extreme. I had...
  5. C

    Are there any doctors who work with sleeping pills other than psychiatrists?

    Dr Levine in nyc freely tries different prescription meds. I’ve tried 4 or 5 and found doxepine works best but the first few days you can feel foggy and it makes you hungry so you will gain weight. I recently switched to Etizolam. It is not available in the USA in pharmacies but however it is...
  6. C

    Anyone here used HIV/AIDS treatment for CFS?

    FYI If you do try antivirals like truvada, there is a week of adjustment. I’m not sure why but it makes you feel rough the first week. This goes away quickly. I now can’t tell I’m on it and my multivitamin causes more issues than truvada.
  7. C

    Anyone here used HIV/AIDS treatment for CFS?

    I was never bed ridden. I would say I was at a 4 at my lowest. I never lost my job but I was becoming desperate and had to take vyvanse prescription amphetamine to just to navigate the world at one point. I have great vision but horrible eye issues. Bright light would drive me into the house...
  8. C

    Anyone here used HIV/AIDS treatment for CFS?

    I have not been active in a long time and used to post in this very thread about 3 years ago. My progress started with truvada. This is very easy to get your hands on now days. My dr was Susan Levine in nyc. I was on valcyte and valtrex for a while. I just got the truvada prescription from a...
  9. C

    Valtrex: what should I expect?

    If your doctor is talking about dieoff he is not a good doctor as valtrex does not cause dieoff. It stops replication which is why it takes so long to treat. Stick with the probiotics. After researching I bought 5 or 6 different brands with many strains (over 15 with over 20 billion) and took...
  10. C

    Valtrex: what should I expect?

    The Dr did say I had markers for yeast overgrowth / candida ... put me on nystatin once a day. Interesting side effect is I stopped craving sweets!
  11. C

    Valtrex: what should I expect?

    Maybe ... my dr actually requested cortisol tests for some reason which I find out Friday. She didn't say why.
  12. C

    Anyone here used HIV/AIDS treatment for CFS?

    Well I'm no expert but as I understand it, if you stop it from reproducing then eventually the virus becomes less and less actuve in your body to where it is at such a low level that your body can fight it off. Technically speaking it could take a few years as your cells die off naturally to get...
  13. C

    Valtrex: what should I expect?

    No I did not and only my own theory as I feel agggressive and slightly grumpy on them. I have read that it causes anxiety more in women than men but there was no definitive answer as to why. I have to give presentations in front of large groups of people and so far have not felt unusual...
  14. C

    Anyone here used HIV/AIDS treatment for CFS?

    Good article however I don't like that he threw out the term herx reaction as antivirals do not kill off viruses and only stop them from reproducing which is why it takes so long to see results. I think the herx reaction in these cases is down to the fact that you are ingesting some pretty...
  15. C

    First sign of Recovery

    Igm
  16. C

    First sign of Recovery

    I am on Truvada (PreP) for almost 8 months, Valtrex 1G a day 3 or 4 months, and valcyte 450mg 2x a day 2 months. I noticed many changes within 4 weeks in eye symptoms and dizzyness after valtrex. These symptoms are almost gone. Sleep is somewhat better. I am now at 4 months for both valcyte...
  17. C

    Valtrex: what should I expect?

    The dr put me in doxepin (silinor) to help sleep. Simply amazing ... the only thing is you have to take 2 hours before bed and get 8 hours sleep or you feel like a zombie when you wake ... actually I still feel like a zombie when I wake but it passes quick. I have not slept this well since I...
  18. C

    Valtrex: what should I expect?

    Anxiety is common ... for some reason it seems to effect women more than men from what I read but I don't think there is any scientific proof to that. I wonder if it somehow effects hormones. I find myself a little short and quicker to temper on it but no anxiety.
  19. C

    Valtrex: what should I expect?

    Interesting ... KI has a these ingredients Each tablet contains herbal extracts equivalent to the dried herbs: Astragalus membranaceus root 5g (Astragalus) Lentinula edodes mushroom 3g (Shiitake Mushroom) Olea europaea leaf 2g (Olive tree leaf) Olive leaf could cause a herx reaction
  20. C

    Valtrex: what should I expect?

    That's great ...I do notice I have some small setbacks from time to time where I felt it stopped working ... I.e. I went down hill a little last week but that seems to have reversed itself. I hear it's pretty common.
  21. C

    Valtrex: what should I expect?

    Antivirals can make you feel pretty rough until you get used to it. I started taking truvada 10 months ago and felt sick for a week ... gas, diharea, fatigue. This went away. then valtrex 3 months ago which gave me horrid gas again and nausea for a few weeks but again went away ... adding the...
  22. C

    Valtrex: what should I expect?

    You shouldn't be breaking these in half ... I forgot why but I remember reading it is not good. I think it is also dangerous if you get any powder or residue in your eyes. (Which makes me wonder what this is doing internally). My script also has a big warning on the side about breaking in half.
  23. C

    Valtrex: what should I expect?

    I mentioned the low carb because you mentioned fruit smoothies. Low carb would be under at least 40g of net carbs and to get into full blown ketosis you need less than 20g of net carbs which is tough. One smoothly could be 50g+ of net carbs. Its not for everyone but something worth trying...
  24. C

    Valtrex: what should I expect?

    Sorry a little new to all the terms and I can post a snapshot of my tests. they say Ab IgG ... i can attach a snippet
  25. C

    Valtrex: what should I expect?

    Have you tried a low carb diet? This is a tough lifestyle change and the first 4 days of transition are hell but the benefits are enormous if you can make it into keto. I did it initially to lose weight but because of the benefits to mood, energy and overall greatness I felt I stuck with it...
  26. C

    Valtrex: what should I expect?

    Let's just I'm in a high risk group. I also travel a lot with work and am in places like South Africa and Asia where HIV is rampant. I am also single and live in NYC and have a healthy sex life. While I use condoms, accidents happen and it just makes sense to me.
  27. C

    Valtrex: what should I expect?

    I am treated by dr Susan Levine in NYC who is a cfs specialist ... I had an active HHV6, EBV (>600), EBV early antigen (28.2), EBV Nuclear antigen (404), active CMV ... To be honest I could not tell how she determined the cmv from this test I'm looking at. I also tested positive for pneumonia...
  28. C

    Valtrex: what should I expect?

    Yes but antivirals do not cause herxing ... There is no die off like antibiotics as they just stop replication. They are however chemicals and make you feel bad for a while. Start slow. I should also mention that I also take truvada for HIV prevention. It is easy to get in NYC and is 2...
  29. C

    Anyone here used HIV/AIDS treatment for CFS?

    Possibly yes but At this point we have a choice of living our lives with cfs and hoping on a future cure 20 years from now (or finding some random herb or other medication that might help) or turning yourself into a Guinea pig. I'm choosing the self medication route as it seams there are very...
  30. C

    Anyone here used HIV/AIDS treatment for CFS?

    In addition to the previous post, search for truvada or viread or tenofovir on this site. There is a post there about someone recovering almost completely using viread(tenofovir) and another AV. http://forums.phoenixrising.me/index.php?threads/my-experience-on-antiretrovirals.41074/