• 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 (FM), 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. PGHCFS

    EBV Reactivation /Zantac / Tagament to boost Immunity - help

    I posted a few months ago about taking Tagamet and I still take it, I think it is helping me quite a bit. I take it along with Famvir. I keep thinking I might back off it a bit to see if it is really helping or if I don't need it anymore, but I don't want to have a really bad day.
  2. PGHCFS

    Tagamet as an H2 Blocker

    Hi Mary, Yes, I have taken inosine with good results. I was taking inosine and Equilibrant for many months and did well on those, but then had a downturn. I started on antivirals and stopped both the Equilibrant and inosine. I may try adding inosine back in at some point, but for now I will...
  3. PGHCFS

    Tagamet as an H2 Blocker

    I haven't posted in awhile because I have been about the same. I have a doc who prescribed me Valtrex about a year ago which helped quite a bit I went from generally lying flat on the couch or in bed feeling flu-like to functioning with lots of fatigue. Then we switched to Famvir and celebrex -...
  4. PGHCFS

    Inosine Reaction

    I don't even combine it, I just use plain d inosine I buy from Amazon. I felt good on it for a while, then went way downhill and stopped most supplements to start Valtrex and to figure out what was and wasn't working. I keep meaning to give inosine another try, but I'm feeling ok right now and...
  5. PGHCFS

    My experience with Valtrex

    I have just started Valtrex today. I would love to hear how Mikipe2 is doing now, any news? Is anyone else taking it and having good results?
  6. PGHCFS

    Picture of my current daily supplements

    I have lots more in a bin that I have tried and then stopped for various reasons. Top 5, this is hard, I went on a long vacation recently and could not pack much, I took: 1. Equilibrant 2. Inosine 3. L-Lysine (along with Vit C) 4. Olive Leaf 5. Mushroom extract I believe my mecfs started...
  7. PGHCFS

    P-5-P I think is fixing my neuropathy

    My Dad does not have mecfs, but does have Peripheral Neuropathy, so I thought mine may be separate from mecfs, but after reading as much as I could on it I decided that I may have issues with B6. I stopped all b6 and added P-5-P and guess what? My neuropathy has improved quite a bit.
  8. PGHCFS

    Rituximab, Equilibrant & Valcyte Experience thus far

    Interesting. I like Equilibrant, I've been on it for 9 months and I really think it is helping. I've also added Inosine and L-Lysine -- I think the combo is helping me, but everyone is different. I certainly still have some bad days, but nothing like before I started these three supplements.
  9. PGHCFS

    Equilibrant

    I went up to 8 and then 9 Equilibrant, I started feeling worse. I am now back down to 7 E and I'm taking a one month break from Inosine. Today is a good day. I'm still walking around the block most days, but I've put the weight lifting on hold for now.
  10. PGHCFS

    Equilibrant

    I don't know the answer to this one, sorry.
  11. PGHCFS

    Picture of my current daily supplements

    My wife took a picture of my currents supplements, just for fun.
  12. PGHCFS

    Equilibrant

    So a week and a half now on 7 Equilibrant per day. I have been walking around the block and doing some easy weight lifting, also an occasional James Bond shower. I feel ok, very little flu-like symptoms right now, but still fatigue. I remember RestinginHim saying that Dr.C said less flu, more...
  13. PGHCFS

    Equilibrant

    Ok, thanks. My wife printed up a protocol, I can't remember which doc, but that is (sort of) what I am following. I always wonder about the doses of these things -- they never mention a difference in mg depending on a persons size.
  14. PGHCFS

    Pyroluria/undermethylation treatment causing sudden relapse?

    I would get off the B6 and see if that helps. I was taking only 10mg of B6 in a B-complex and I think even that low dose affected me.
  15. PGHCFS

    Equilibrant

    You results sound promising! I have Life Extension brand inosine, it's in a blue and white bottle -- I think my wife ordered it from Amazon. I have been pulsing the Inosine, right now I am taking 4 per day, so 2 grams. I just upped the Equilibrant dose to 7, which is more than it says on the...
  16. PGHCFS

    Equilibrant

    Good to hear from you! So sorry about your brother. I think the inosine has really helped me. It's interesting that Dr.C is telling you to decrease Equilibrant while on it, I haven't done that, in fact I just raised my dose. Hmm, maybe I should rethink that. I know some doctors say to take a...
  17. PGHCFS

    Started Equilibrant...

    No, I never had a biopsy -- I just feel that mine started with a virus and is not stress, mold, yeast, food allergy related, so it made sense to me to try it. I have had big ups and downs since starting back in, I think it was, February. I think adding the Inosine made a big difference for me...
  18. PGHCFS

    Equilibrant

    I take Carotec Olive Leaf Extract. I once went to a Naturopath that said it was good. I went to the website and got a big discount by ordering a lot all at once. My wife and kids take it when they start feeling sick and none of them have been sick at all! It's pretty amazing.
  19. PGHCFS

    Equilibrant

    New update: still taking Equilibrant, inosine, and lysine -- also olive leaf, vit C, fish oil, vit D. Feeling good -- for me (not normal yet). I started walking everyday this week. Hope you are all doing well!
  20. PGHCFS

    Started Equilibrant...

    I'm still taking Equilibrant (started 7 per day today), inosine, and lysine. I feel the best I have in years. This week I have started walking everyday. Fall is usually not a good time for me, so I am hoping this will last.
  21. PGHCFS

    How many of us have neuropathic pain/damage; both peripheral and autonomic?

    I started having peripheral neuropathy after this all started too. My Dad has it, but not cfs, so I wasn't sure if they were related, but I guess they are. I recently went on vacation for three weeks and the pain felt a bit better, quite a bit better actually. When I returned home it started...
  22. PGHCFS

    Equilibrant

    Not feeling great right now, I think it may have to do with stress about an upcoming vacation and air travel, etc. I don't know what to do about vitamins, I keep switching depending on what I read. For example, I have been taking 4000iu vit D, then I heard it is bad for me/cfs -- so now I don't...
  23. PGHCFS

    Equilibrant

    I emailed them and they gave me free shipping, but I was ordering multiple boxes and I live in the US. It's worth a try.
  24. PGHCFS

    Equilibrant

    Month 6 on Equilibrant. I am also taking Inosine, New Chapter mushroom immunity supplement, and olive leaf. Plus vitamins. I feel the best I have felt in years. Not 100%, but much better.
  25. PGHCFS

    Why pulse inosine

    In the studies I have read about inosine in treatment for MS or HIV, there is never a mention of pulsing. Why is it important for mecfs? I feel so much better on it that I hate to eventually take a month off.
  26. PGHCFS

    Equilibrant

    Could be the Equilibrant, could be the Inosine -- not sure why, but I feel a lot better right now (knock wood). Actually had energy to mow half the lawn and then the day after still felt well enough to play frisbee with my son. I'm cautiously hopeful right now.
  27. PGHCFS

    Equilibrant

    I'm starting on inosine again today. 4 x 500mg plus 6 x Equilibrant. I felt really decent, for me, after stopping the inosine last time, so I hope that means it helps. I started feeling a bit worse a few days ago, so I am glad to be starting up again, even though I know it does make me feel...
  28. PGHCFS

    Equilibrant

    Working with? As in a doctor? Wishful thinking... I have never found one here in Pittsburgh, so I am on my own (my wife actually does all the research since my brain isn't able).
  29. PGHCFS

    Equilibrant

    I took 1000 mg Inosine m-f last week and felt horrible - flu-like, but tolerable. I'm off it right now and feel ok. I need to deal with my extended family this week because my Dad is sick, so I am not taking it now, but I plan to start a higher dose next week. I read all of your previous...
  30. PGHCFS

    Equilibrant

    I thought the reporter, David Singer, did an excellent job showing both sides. I know he had a very difficult time finding doctors in Pittsburgh (i cant find any!) and getting interviews with cfs experts. It's not an easy subject to report on since there are so many points of view, but I thank...