• 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. M

    Mestinon - pain increase?

    Thank you for the replies. I'm still at a very low dose, I don't think there's much chance of overdosing this level. There's so many things that could be increasing pain (most of which I probably will never know for sure) — I just wanted to see if anyone else had this coincide.
  2. M

    Mestinon - pain increase?

    Hi, I've been working my way up to a decent Mestinon dose. I've also had an increase in pain. This could be...from anything, or just the illness. But wondering if anyone else has experienced this as a possible side effect. I'm getting lots of muscle twitches/spasms too, but I think I read...
  3. M

    Am I the only one?

    That's my guess, and my doctor agrees. He's not up on Mestinon—and I'm not sure I put the pieces together on it, or whether I understand its mechanism + AChR antibodies. That is maybe the only test I have not had at this point. What always kept me from Mestinon is that I really don't have any...
  4. M

    Am I the only one?

    Just saw this. Same exact thing here, I probably posted about it years ago. I don't think I had much from others experiencing the same thing. I will say that I think Sunflower Lecithin helped with the head pressure/derealization. I didn't take it FOR that, but realized those symptoms and...
  5. M

    2nd January: BBC article on Prince's staff member stricken by ME referes to neuroimmune disease

    I hope people like my pictures :) (thanks for your comment–I'm here, so I saw it)
  6. M

    2nd January: BBC article on Prince's staff member stricken by ME referes to neuroimmune disease

    The author, Mobeen, is entirely responsible for accurately representing MECFS. He read the Washington Post story about Ron Davis' research (I'm in the big data study), and he is a really highly regarded (and courageous—he's done amazing war-zone reporting) journalist. I got a lot of messages...
  7. M

    OMF progress

    you are pretty much always helpful. :) thank you
  8. M

    OMF progress

    I'm confused. Kaufman...left OMF? Did they take the clinic name? I hadn't been able to see him due to $ issues, and then this office split happened and maybe I missed something (note: I searched threads to see if I could figure it out, but couldn't find anything)
  9. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Mike VanElzakker talks about the same difficulty in how to look into the idea, because is not possible to biopsy the vagus.
  10. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    First, thank you for writing so much and helping with processing. It was so great that the seminar was available, but I was frying out over and over. May I ask—are you edging around some of the ideas about a vagal infection? I haven't quite figured if that's at odds with some of these more...
  11. M

    Has anyone taken Ketotifen for MCAS?

    You are almost always more than helpful, and I mean that for real. Thanks. I feel like I've been a guinea pig for 8 years and dont want to be my own doctor, but I don't know how I could afford to have anyone help me track all of these gremlins that apparently all contribute. These diseases are...
  12. M

    Has anyone taken Ketotifen for MCAS?

    TINY doses of Ketofin seem to just knock me out. Not drowsy, but unable to move. I keep reading posts throughout the internet with people talking about a) how X antihistamine(s) changed their lives for better (along with avoiding triggers, food) and b) how X anithistamines (including often...
  13. M

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    I wonder if any doctor or clinic would be able to devote the time, tracking and resources to come up with protocols that would be so individualized. I think it would be great. Great to have lists of 'safe' supplements (they seem to constantly change fillers, etc), dietary direction rather than...
  14. M

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    I'm not sure if it will be an answer—I read the comment about rituximab, and I've never been able to figure out what percentage of people stayed recovered, what 'recovery' actually was, and even when pointed in the right directions, still can't get a fix on that. Yet, I know clinics are...
  15. M

    Has anyone taken Ketotifen for MCAS?

    I started Ketotifen a couple weeks ago, 1 mg 2x per day. After first days doing that does, one day i was hit so hard with immoblizing sedation—I was nearly hanging off the bed with my mouth open all day. Was pretty awful. I've tried to back off and take in a more manageable way. Did tons of...
  16. M

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    I just saw all of this. It's strange, how long and deep I dive into things and then run into more when I was sure I'd exhausted the search. I had some kind of seizure activity for years of this illness. I didn't know what it was, but when explained to a few neurologists and another doc—they...
  17. M

    Ben and Claire's adventure to Davis-Dafoe land!

    Same here. Yesterday, today.. Safeway, and Coram in my case. I live near to your hosts here. I think some of us learn the hard way—sometimes you have to get very aggressive in order to get things done. Not sure why, but appealing to professionalism and some sense of importance doesn't work...
  18. M

    An Update on ME/CFS Research with Ronald W. Davis, PhD

    As is often the case, about 4 pages in, this got into biochemistry and processes that I cannot begin to process. I do have a question. Mast cell issues seem to be nearly a given in the past couple of years, at least in my experience, as a blanket-cause of countless symptoms. My testing for it...
  19. M

    People's experiences of Bartonella

    May I ask you the same question as Erica did? I can't figure out how to PM you. Thanks.
  20. M

    elevated Coxsackie virus -- how high is high?

    I'm curious as to whether anyone is actively using Equilibrant or following/seeing Dr Chia's protocol. Things have been very very quiet on that front for a while.
  21. M

    Mold, any experience with Dr. Johnson Clinic in dallas?

    Just wondering if anyone has any experience or knowledge of this clinic in Texas that treats mold (and related) CFS/ME issues. Any direct experience or knowledge of their protocols would be what I'm asking about. Thanks very much.
  22. M

    In a crash, I am a mess...

    I go through "I'm doing something wrong" on a constant basis. Even if I just go a little extra and try to make food that's a little more enjoyable, and then crash....I have this self-loathing/upset....I've told people it's as if I was getting really drunk or something and ruined future time/days...
  23. M

    In a crash, I am a mess...

    I don't fit, either... I fit a little here, a little there. Very sick, but not dying, don't have organ failure. But seem to be more disabled than many, pain + very, very sick. No good answers. I'm very sorry about your crash, and hope you get out of it and soon. What you wrote, how you wrote...
  24. M

    Famvir?

    Hi, just looking to see if anyone's had struggles taking Famvir and what you may have done to help it. I do not want to punk out on yet another med, but I have been having really big troubles with meds the past year. Before that, not so sensitive. I have pretty terrible abdominal pain as it...
  25. M

    CrowdMed: how to get and give diagnostic suggestions for complicated patients

    Dan, I feel the same as you about it. I did offer a modest reward, but most people seemed to have just put a few of the first few symptoms into Google, and then put that in as their 'guess'. I also had many guesses that were things I had written had been definitively ruled out.
  26. M

    Antigliadin antibodies (AGA-IgA)

    I have had the same issue… high levels of anti-gliadin antibodies, having been pretty militantly gluten-free for a few years. A couple times, I may have had a bit (due to mislabeling), but very very careful. I've heard different things about cross-reactivity, and have seen various lists that...
  27. M

    HHV levels high enough to warrant treatment?

    Hi.. Wondering about this. I've read so many different threshold numbers for HHV6 IGG levels and treatment with something like Valcyte, I thought I'd look to all of your experience. Last year, I had HHV6 (actually marked HSV6 on Quest) of 1:640. I think that is the threshold that at least some...
  28. M

    Patients Taking Valcyte with Imunovir/Equilibrant

    Thank you again. I'm wondering…when you say it was difficult for you (Equilibrant), can you tell me a bit more? I've read other people saying it was difficult (or unbearable), but I wonder if others experience what I do. Even 1/2 pill (after 5 weeks or so) can hit me very hard, and quite fast...
  29. M

    Comment by 'Michael_venice' in 'In hope that this helps....'

    I hope this thread continues… very interested.
  30. M

    Patients Taking Valcyte with Imunovir/Equilibrant

    Wow, that was SO helpful, thank you. Even what you wrote about 'placebo' effect--that echoes things I've said about various treatments. I mean, you really get it, and articulated it in way that I can really relate to. I'm about 6 weeks in. I'm JUST up to 1/2 pill day, sometimes a sliver more...