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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. W

    Valcyte- Feel Terrible

    Thanks again – these are some great suggestions!
  2. W

    Valcyte- Feel Terrible

    Thanks for your suggestions about alternative headache remedies! I will definitely talk with my doctor about them since I don’t want to cause more harm by taking traditional anti-inflammatory medications. Thanks again!
  3. W

    Valcyte- IRIS or Relap

    Thanks for the clarification – I thought you were speaking about a product since Optimize hormones was capitalized. I see that you were just talking about optimizing the various hormones. I have had cortisol and thyroid checked, but perhaps I will ask my doctor to add testosterone and DHEA...
  4. W

    Valcyte- Feel Terrible

    Thanks for your reply. I’m sorry to hear that they did not help you!
  5. W

    Valcyte- Feel Terrible

    Thanks for your suggestions. I do like to try herbs and nutritional supplements, not just rely on medications. I think that my headaches are more tension headaches than migraines, so I wonder if the serotonin idea also applies to tension headaches. Thanks again.
  6. W

    Valcyte- Feel Terrible

    Thanks so much for your thoughtful response. It seems like there are so many different reactions that people have to antiviral medications. I have heard that others have had Herx or IRIS type reactions as early as 1 month and as late as 6 months. So, it is really hard to tell if that is what I...
  7. W

    Valcyte- Feel Terrible

    Thanks again! I really appreciate your suggestions, and will definitely follow up on them. Also, thanks for the support- I hope to feel better soon...
  8. W

    Valcyte- Feel Terrible

    Thanks so much for this idea! I have never tried them together, but it makes sense that it would work better than either one alone. This is similar to the Excedrin for Migraines that someone mentioned earlier, except that product is aspirin and Tylenol, and it also has caffeine. Also, thanks...
  9. W

    Valcyte- Feel Terrible

    Did you have a viral reactivation while you were on those meds? How long did it last? How long were you on Valcyte and Famvir, and did they help you?
  10. W

    Valcyte- Feel Terrible

    That is really interesting, worth considering that there is a viral reactivation, and that staying on the medications may be wise. But, it is also confusing because I have read on this forum that these terrible symptoms which develop in response to Valcyte may be due to a Herx or IRIS reaction...
  11. W

    Valcyte- Feel Terrible

    Did you have a viral reactivation while you were on those meds? How long did it last? How long were you on Valcyte and Famvir, and did they help you? Thanks so much!
  12. W

    Valcyte- IRIS or Relap

    Thanks so much for your note! I will ask my doctor about Immunovir. What is Optimize hormones? Also, do you know what works for headaches? Do you know anyone who has tried Celebrex or Low Dose Naltrexone for headaches?
  13. W

    Valcyte- Feel Terrible

    Thanks for your notes! I haven’t tried Excedrin, so I appreciate the suggestion. I was also thinking about Celebrex or Low Dose Naltrexone if I can get a prescription. Do you know about those? Also, I will definitely see what the availability is at the Center for Complex Diseases- that’s...
  14. W

    Valcyte- Feel Terrible

    I have been on Valcyte 900 mg/day and Famvir 1000 mg/day for 6 months, and suddenly I developed severe headaches, weakness, sore throat, and swollen glands. I stopped the medications, but 6 weeks later I still feel terrible. My blood chemistry panel is normal. My doctor is more of a Lyme...
  15. W

    Valcyte- IRIS or Relap

    After being sick for many years and being treated for both Lyme and Candida with significant improvement, I still experienced exercise intolerance and frequent colds. My doctor started giving me antiviral treatment since I test high for EBV, CMV, and HHV6. I have taken Acyclovir, Valtrex, and...