• 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. bel canto

    Revealing enterovirus infection in chronic human disorders: An integrated diagnostic approach

    Might be interesting to see how many people here had family members with one of those disorders noted above. I had a parent with post-polio syndrome. Subclinical doesn't necessarily mean non-transmissible, I think.
  2. bel canto

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

    I hope that Ben and Claire were still here in northern California today to enjoy some of our wonderful sunshine at last!
  3. bel canto

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

    Did I understand correctly from Ron's talk that the metabolomics testing is not going to be offered to patients in the near future? I thought that the plan was to make it available to us as soon as possible. Maybe I misunderstood.
  4. bel canto

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    @nandixon - I don't know that this will have any relevance to this discussion, but I ran into a mention of defective mTor signalling in a Castleman's (rare autoimmune disease) patient. His theory is that his disease is due to overactive signaling of this pathway, but I thought I'd provide the link.
  5. bel canto

    A unofficial update on Prof Davis and Janet Dafoe...

    Thank you, Rose, for all you and Ron do. And for giving us glimpses of your lives, and of Ron's optimism. We are so very grateful!
  6. bel canto

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    How would this be likely to show up on a Nutreval test if at all? Would the pyruvate levels (urine) be increased if it's not being converted into acetal CoA?
  7. bel canto

    CFS and Lyme? Not sure of anything. Help.

    We don't know much about the metabolomics test that will soon be offered to patients as a result of the OMF research, but it seems to be expected shortly. My hope is that it might give additional clues to help sort out some of the issues discussed here. It can't come soon enough!
  8. bel canto

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Is the only way to determine what group a patient fits into through the Acumen test? Do amino acid levels in urine give clues? Do high versus low pyruvate levels in urine reflect one group vs. another? I'm thinking that the Acumen test is the one that is not offered outside of the UK. This...
  9. bel canto

    Postural orthostatic tachycardia syndrome is associated with platelet storage pool deficiency

    A well-respected hematologist recently told me that SSRI's can lead to an acquired bleeding disorder. As a POTS patient, I've never associated a mild bleeding disorder with that condition. Very interesting.
  10. bel canto

    Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

    Gordon Medical may have an apparent conflict-of-interest, but metabolomics is a field of research that is happening all over, and most researchers do not sell supplements. If this hypo metabolic state is involved with or creates deficiencies, treatment of those may be important to allowing the...
  11. bel canto

    Dr Hanson Solve CFS webinar transcript, Sept 2016

    Yes, thank you, AndyPR. This was a lot of work and so many of us benefit from it!!!
  12. bel canto

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

    "Direct input from researchers of this calibre is very fortunate, and kind" Amazing to have this kind of access for answers to our questions. Please, Ben, tell them how immensely grateful we are, not only for the research, but for their kindness.
  13. bel canto

    Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data

    Livewello has reported on at least one snp that is connected with significantly less biodiversity in the gut, and is associated with a number of conditions, including some autoimmune such as crohn's. Being away from home, I can't access my account to locate the information. It will be...
  14. bel canto

    Treat MS with vitamin A - 2016 PubMed research 2 new studies

    I'm pretty sure that there's a genetic variant related to the ability to either use Vit A or convert it to usable form. Would be interesting to know if it's more common in MS patients. And whether the vit D sups that are already recommended impact the ratio mentioned above.
  15. bel canto

    OMF(Open Medicine Foundation) OFFICIAL THREAD inc Q And A!

    Ben - done. done. and done. Thanks for giving us links to help.
  16. bel canto

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    Thank you so much for keeping up with us on this forum, Janet. We are so grateful to Ron for his efforts, and hope that Whitney will regain his health soon. Another donation has been made by us tonight.
  17. bel canto

    Clinical Geneticists, and their usefulness (or lack thereof)

    @JaimeS The legal system in the U S is part of the problem with over-testing and over-treating patients - cya mentality, Doctors are afraid of getting sued, and patients often want more testing than is really needed. Another piece of our problem is that many docs own all of part of testing...
  18. bel canto

    Zika tied to a 2nd adult brain disease ("acute disseminated encephalomyelitis" [ADEM])

    I read in the last couple of days an article that researchers now believe that Zika came to the Americas with one person on a flight from endemic areas, before the large groups that were there for the sporting events. Hard to believe that it could explode so quickly.
  19. bel canto

    Transient Bleeding Issues?

    Interesting discussion. Although I have a tendency to bleed easily, I'm seeing a lot more evidence of it as I age. Scratching itchy skin can cause large areas of bleeding and bruising. And I bleed tiny amounts from acupuncture holes. My platelets have always been very low normal. My doc...
  20. bel canto

    TEVA clonazepam--changed formula?

    Leela, with all the counterfeit drug issues out there, is there any possibility your source was compromised?
  21. bel canto

    Paraneoplastic Syndromes

    The whole concept of paraneoplastic opens up a lot of questions. The severe ones that attack the cerebellum or the muscles have been looked at and antibodies identified. But how many others are out there that are not as disabling and therefore not identified? If someone is diagnosed with a...
  22. bel canto

    Cold Urticaria?

    Hi, acer, I have had a few bouts with cold urticaria, but they were years ago. Since I absolutely stay away from cold water, I have not had any recurrences. Mine would show up anywhere my skin was exposed to cold water, and only there. Once, while floating in a river in an inner tube...
  23. bel canto

    Paraneoplastic Syndromes

    Yes, thanks, anciendaze for an interesting thread, and, particularly for the referenced article above!
  24. bel canto

    Does anyone here have Pulmonary Hypertension by any chance?

    PAH stands for pulmonary arterial hypertension. It can be primary, with no known cause, or secondary to some other condition such as autoimmune disease, blood clots in the lungs, and many other causes. It's usually a very serious disease but there are multiple treatments now available for it...
  25. bel canto

    Changes in Gut and Plasma Microbiome following Exercise Challenge in ME/CFS

    I'm thinking that this chart is not showing zero levels, but is showing that these bacteria don't change in controls, but do change by the specified %'s in the patients. It's confusing the way it's described as "relative abundance" on one axis.
  26. bel canto

    D-Lactic Acidosis in CFS

    http://www.cortjohnson.org/blog/2015/10/12/lactic-acidosis-causing-cfs-fm-symptoms/ Not sure if this is posted elsewhere.
  27. bel canto

    In memory of my aunt

    That was a gift you gave her - recognition and validation that she had been sick for many years with an untreated and unrecognized illness. I would imagine that would have been a real comfort. I'm sorry for your loss and send hugs and best wishes.
  28. bel canto

    Autoimmune conditions

    Extensive autoimmune in our family. My mother had five diagnoses - my three sisters and I have seven among us, including one extremely rare (Castleman's).