• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Mariesak

    getting worse on Valtrex - flu-like crashes / please, help

    Thymosin alpha for 6 months, thymosin beta for 2 months. I did feel a bit tired initially, but no big deal.
  2. Mariesak

    getting worse on Valtrex - flu-like crashes / please, help

    Not that I’m aware of. Seems like EBV is the big problem for me. I’m not sure which scale you are referring to, but I was housebound and mostly bed/couch-bound. Now I’m able to do most anything except intense forms of exercise.
  3. Mariesak

    getting worse on Valtrex - flu-like crashes / please, help

    Much better. Been off antivirals for many months. I had some improvement from Valtrex & Celebrex. But the big game changer has been peptides (thymosin alpha and beta). I have a life again!
  4. Mariesak

    My appointment with Dr Susan Levine

    Regarding this post, wondering what you mean by long term? What is the window for antivirals? I’m asking because I was diagnosed 10 years ago and had good response to antivirals. I relapsed two years ago and am not finding the antivirals to be as effective.
  5. Mariesak

    Mestinon + Famvir - whoa!

    Great news! Thanks for letting us know.
  6. Mariesak

    getting worse on Valtrex - flu-like crashes / please, help

    I’ve been on Celebrex for nearly 3 years. It certainly helps with pain an inflammation, but I don’t notice that it has any antiviral benefits.
  7. Mariesak

    getting worse on Valtrex - flu-like crashes / please, help

    Yes, I get a lot worse before getting better on any antiviral. I’ve been on Valtrex for 8 months. Even starting with a low dose and increasing very slowly, I had several months of feeling awful. I didn’t see any improvements until the 4th month. I just kept reminding myself that it was a good...
  8. Mariesak

    Mestinon + Famvir - whoa!

    All this time I’ve been thinking that all of this anxiety is due to being sick again......maybe it’s the Valtrex...or both.
  9. Mariesak

    Mestinon + Famvir - whoa!

    Wow, was that even on a very low dose?
  10. Mariesak

    Mestinon + Famvir - whoa!

    Oh I see! I knew that antivirals don’t actually kill viruses, they just encapsulate them and prevent them from replicating. Sadly, I’ve given up on the capacity of my immune system to kill them. Although it did do a good job of keeping it in check for 8 years after many months on high dose Valcyte.
  11. Mariesak

    Mestinon + Famvir - whoa!

    Start at the lowest possible dose, then very gradually work your way up. It took me 2 months to work up to 4grams of Valtrex. It can be a very slow and unpleasant process. But worth it if you get benefits. Best wishes
  12. Mariesak

    Mestinon + Famvir - whoa!

    Curious about why you are not unhappy about the virus trying to come out of latency? Is it easier to treat?
  13. Mariesak

    Mestinon + Famvir - whoa!

    Please keep us posted.
  14. Mariesak

    Mestinon + Famvir - whoa!

    Sorry to hear this. Perhaps you didn’t get the energy boost at 3.5 months because you’re not on the high dose of antivirals that Lerner recommended? Maybe consider adding monolaurin and/or L-Lysine. It also may be that you are rundown for some other reason...cold, flu etc. The same thing...
  15. Mariesak

    Do you have ME/CFS with or without sore throat?

    I have exactly the same story!
  16. Mariesak

    Mestinon + Famvir - whoa!

    Not entirely sure what caused the relapse...there were some family stressors, but nothing unusual. Yes, it was a shock after being in partial remission for so long. It sounds like you are taking lower doses of Famvir and Celebrex than I was. I’m still taking 200mg Celebrex twice a day. I was...
  17. Mariesak

    Mestinon + Famvir - whoa!

    I was on Famvir & Celebrex for two years. Similar to you, I didn’t see any improvement for a couple of months. Those were a rough couple of months. Then things started to improve for nearly 2 years. This past Feb/Mar I had a major EBV relapse and switched from Famvir to Valtrex. I didn’t start...
  18. Mariesak

    Difficulty breathing + feeling of "lump" in throat

    Thanks! I don’t think it’s just cobblestone throat in my case. There is also a feeling of tightening and a lump that’s always there, but the severity varies. Also have dry mouth, sometimes burning too. I’ve been on Valtrex for nearly 6 months. Slowly adding in monolaurin. You’re right...
  19. Mariesak

    New doc at Stanford

    Is that 1 gram per day?
  20. Mariesak

    New doc at Stanford

    What dosage of Valcyte does he recommend?
  21. Mariesak

    Difficulty breathing + feeling of "lump" in throat

    Mariah, Wondering if you’ve found any relief from this? I have been having a feeling of a lump/tightening in my throat for nearly a year. I saw an ENT recently who told me it’s viral cobblestone in the back of my throat caused by chronic EBV. He didn’t recommend any treatment. He just said that...