• 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. B

    Any Dr. Systrom patients here? - Mestinon (Pyridostigmine bromide) and safety profile

    No, I haven't. I'll check it out.
  2. B

    Any Dr. Systrom patients here? - Mestinon (Pyridostigmine bromide) and safety profile

    I've been on Mestinon for three years now. I built up slowly the first month to the point where I take 60mg pills three times a day. It gives me muscle twitching and sometimes muscle cramps, but I don't mind that much. The unpleasant side effect is that it gives me IBS symptoms (abdominal...
  3. B

    Jordan Peterson - Diet & Health

    Jordan has withdrawn from most of his public appearances because of personal issues. His wife had cancer and some difficult side effects to a surgery that required his attention for a long time. The he mentioned that he had become addicted to Klonopin and he checked himself into rehab. He...
  4. B

    ME/CFS Specialists in Seattle, WA State

    I live in Seattle and I work with Dr. Matt Davies to deal with my cfs. He is an endocrinologist at Swedish. He is not an expert on cfs, but he believes it exists and he has been very supportive of every experiment I have wanted to pursue. Because he's not an expert, he's not likely to keep up...
  5. B

    Overview from the OMF panel discussion for severe patients?

    The symposium was discussed in this thread and this message in particular has a useful summary.
  6. B

    Mestinon side effects?

    I had stomach and intestinal discomfort when I started on Mestinon, but it got better. I gradually increased the dose over a three week period to give some time for my body to adjust.
  7. B

    Need advice on the Ketogenic Diet

    I've been on keto since August of last year and it has been the second most powerful intervention I have tried in the 25+ years that I have had cfs. For me I saw improvement within a week, as Ryan suggests. The biggest changes were increased alertness and energy. I had some keto flu, but that...
  8. B

    Does anyone understand the trigger of POTS/Dysautonomia re: bending from a standing position?

    Your question makes me think of a line of research done by Dr. Peter Rowe. He has found that patients with cfs have limited range of motion and that even something as simple as examining them and stretching their limbs can bring on symptoms of cfs. I don't understand it very well, but I...
  9. B

    Anyone tried Ritalin?

    Peter Rowe recommended Ritalin as a possibility to explore for cfs patients with POTS. The results for treating POTS have been more encouraging, as in this study.
  10. B

    Anyone tried Ritalin?

    I have POTS and NMH in addition to CFS and I noticed that Peter Rowe recommended Ritalin as an option to consider. I have been taking the time-release version called Concerta because that's what my doctor prefers to use. I take it mostly to improve cognitive function (memory and...
  11. B

    Need opinions on treatment/ testing

    Tests like these are important to rule out other possibilities (cfs is a diagnosis of exclusion), and to see if you have any deficiencies that can be addressed like low thyroid. But otherwise it's unlikely that any of these tests will help lead you to better treatments. In other threads you...
  12. B

    What has helped improve your energy the most?

    After a crash, the only remedy that works for me is spending most of the day resting in bed preferably in a darkened room for many days in a row (sometimes weeks or months), which supports the idea of pacing to prevent that, as others have mentioned. For energy, nothing has come close to the...
  13. B

    Cognitive impairment

    I've tried many things over the years for cognitive impairment and each drug has its own pluses and minuses. I don't think there's a good substitute for just trying a lot of different things and seeing what works. I have been on several SSRIs and spent years on Zooloft, but ultimately I...
  14. B

    plan for no cure and hope you're wrong

    This is a painful subject to discuss, so I appreciate how thoughtful all of the responses have been. @pibee and @neweimear are asking how to move on and I don't have a great answer. I think @lior is right that the key is reaching a point of acceptance. I particularly liked the personal...
  15. B

    plan for no cure and hope you're wrong

    It sounds to me like you're deep into the mourning of the loss of your old self. You said as much yourself. This totally resonates with me. I still sometimes shed a tear or two when I think of things I've lost. It's okay to grieve. But don't let it define who you are now. I still remember...
  16. B

    Rituximab Phase III - Negative result

    That was a long video chat with Ron, but there were useful nuggets in there. He talked about the tension between publication and sharing of ideas. It's best to publish, but that takes a long time. The patient community would prefer to hear ideas right away. The problem with that is that...
  17. B

    plan for no cure and hope you're wrong

    Clearly many of us are deeply disappointed by the news that the Rituximab phase III trial was negative. For me, this is déjà vu all over again. I first started researching cfs around 1993 when I was first diagnosed (5 years into my illness). I found positive news items about an experimental...
  18. B

    What is your favorite probiotic

    Align has a double-blind study indicating that it reduces inflamation for cfs patients. Unfortunately, the dosage they used was equivalent to taking 10 capsules a day. I've been taking 5 a day and I'm thinking of increasing to 10. I don't feel a strong effect, so it is difficult to...
  19. B

    New doc at Stanford

    The idea of using dark chocolate has been around for a while. There was a study in 2010 that indicated improvement of symptoms for cfs patients. It was a small study, but it was double-blind. You can read more about it here. In the study, patients were given 45g of 85% dark chocolate. For a...
  20. B

    I wasted an extreme amount of $$ money for supplements with no effect

    We're all different, so we will each have different experiences, but I have had largely the same experience of trying tons of things and finding very little that has much effect. You mention wasting money, which I have done, but I think I'm more disappointed that I wasted so much time and...
  21. B

    Solve ME/CFS Discovery Forum 2017

    No, the Solve ME/CFS Initiative is a different organization. It used to be called the CFIDS Association. It sponsors some research, but nothing as extensive as what Ron Davis does at OMF. They are also involved in advocacy and working to get more government support. They've done some great...
  22. B

    Solve ME/CFS Discovery Forum 2017

    I received an email today announcing this. The speakers are Ian Lipkin, Vicky Whittemore, Rick Williams, Becky McNell, Zaher Nahle, Maureen Hanson, Ralph Garippa, Ken Blount, Nancy Klimas, Dan Peterson, Elizabeth Unger, Derya Unutmaz, Peter Rowe, Lucinda Bateman, Susan Levine, and...
  23. B

    Auto-immune (paleo) - losing some weight but feel lower energy, - comments ?

    Diet is almost certainly one of those areas where there will be great differences across the cfs patient population, so it is likely that what works for one person will not work for another. But I thought I'd mention that I've been on a ketogenic diet for about a month now and it has had...
  24. B

    New Montoya Radio Interview

    Let me try to keep the thread focused on Montoya to keep it from veering off into a discussion of KDM. I haven't had the time to investigate Montoya, so I don't know much about what he does. I get the sense that he believes in the idea of an active viral infection for at least a subset of CFS...
  25. B

    New Montoya Radio Interview

    I listened to the entire interview. I enjoyed hearing Dr. Montoya discuss his work with cfs patients, but it was annoying to have the host push his ideas over and over that CFS is a variation of AIDS, that both are caused by HHV-6, that CFS is contagious, etc. As Montoya said, these ideas are...
  26. B

    Could a drug that mimics a zero-carb diet help us live longer, healthier lives?

    Chris Armstrong mentioned at last month's Community Symposium that the clinician he works with recommends digestive enzymes for patients that are on a ketogenic diet and that it seems to help. I've just recently gone back on the diet and I'm using digestive enzymes, although it's hard to tell...
  27. B

    Lack of chatter about the Ketogenic Diet

    I've been on a ketogenic diet for a little over three weeks and I thought I'd post my experiences so far. I've been on this diet twice before. Each time I felt a surge of energy and alertness right away. It's really amazing that this simple change produces such a difference so quickly. In...
  28. B

    ME , aging , and LGBT isolation

    I think you're right about differences between gay men and lesbians in terms of how older adults fit in. There is a longer tradition in the gay community of relationships between older men and younger men and maybe gay men are more practical about recognizing that older men have more resources...
  29. B

    New thread for new members

    I just recently joined PR, although I've been reading posts for a while. I got sick in 1988, so it's been a while. I have mild cfs, although nothing about it feels mild. I often test with high titers to EBV, I have had a tilt table test from Dr. Rowe at Johns Hopkins that verifies that I have...
  30. B

    ME , aging , and LGBT isolation

    You raise many really tough questions, but I'm really happy to finally be able to use the word "intersectionality" in a meaningful way. Your message resonates with me in that I have issues related to being a gay man, having cfs, and approaching 60. The combination is particularly difficult to...