• 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.

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  1. PNWMom

    Tracking CCI / AAI MRI & Treatment outcomes

    It wasn’t the ME doc (I probably misstated it). It is her physical therapist (DPT). He sees a lot of patients who are affiliated with the University of Utah team (Melissa Cortez, neurology; Laura Pace, neuro-gastroenterology). I don’t know how he came to be so well known in the dysautonomia...
  2. PNWMom

    Tracking CCI / AAI MRI & Treatment outcomes

    My daughter had a consult with Dr B this week. Seven years ago, she was diagnosed with ME/CFS by an ME expert MD. Since then, she also has been diagnosed with POTS, seronegative Sjogren’s, gastroparesis, MCAS, EDS and other stuff. She has been seen at the Mayo Clinic and had a full genetic...
  3. PNWMom

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    THANK YOU!! Any input or ideas you have would be appreciated. As I’m sure you know from your experience we’re desperate. FWIW, my daughter did great with immunosuppressive therapy but IV Ig was a disaster. Good luck with your cat. We have two dogs and whenever there is a medical issue, it is...
  4. PNWMom

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I’ve read this thread with incredible interest. My twentysomething daughter was diagnosed with EDS hypermobility type using the newest established criteria after being diagnosed with POTS (Mayo) and ME/CFS (Bateman). Her EDS specialist PT has been adamant that my daughter get a upright...
  5. PNWMom

    Webinar with Dr. Alan Light on Novel Gene Variants in ME/CFS and Fibromyalgia

    I talked with Dr Light last spring at a Bateman Horne event. He mentioned he was applying for NIH then. Is this "Novel gene" study that project? Does anyone have more details? I'd like to know who is working with him on it. Wouldn't there be a public record of it somewhere?
  6. PNWMom

    NIH awards 'supplemental grants' to Lipkin, Katz, Fletcher, other big names

    Cool! My daughter's blood sample is going into the Lipkin project. Nice to know what it is specifically :)
  7. PNWMom

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Thank you for this observation. The reality for some ME/CFS patients like my daughter is that a consequence of het autonomic dysfunction is drastically dysfunctional GI motility, both gastric emptying and large intestine motility are too slow. Food sits her stomach for too long and rarely...
  8. PNWMom

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

    Like others, I have had misgivings about the protracted use of antimicrobials without concrete justifications. Without a clear infectious trigger event in my daughter's case, there has always been the concern of unforeseen comsequences. She has deteriorated over time--and not in the...
  9. PNWMom

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

    One of the therapies they are looking at is the venofer IV that has been investigated for POTS patients. The others are what most PR people know--rituxan, IV-Ig. They already know her dysautonomia is secondary to something. There is enough evidence for autoimmune issues, one doc believes, to...
  10. PNWMom

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

    The question I keep returning to is co-morbidities. Does this research, or do the Drs Davis and Naviaux have any hypotheses about whether some of the commonly accepted co-morbid conditions like dysautonomia precipitate the dauer/hypo metabolic state or are they caused by it? (or is this answer...
  11. PNWMom

    Bateman Clinic Question

    And to be absolutely honest, I love Dr Bateman. She has been our personal angel throughout this hell we all know as ME/CFS. If you can get into her clinic, know that you will be treated with respect and kindness. They will do the best they can with whatever your son's circumstances. Dr B is a...
  12. PNWMom

    Bateman Clinic Question

    My daughter is a Bateman patient. My understanding is that they may have a new clinician working to shoulder the patient load. They are typically more willing to bring in patients that have some infrastructure in terms of primary care or specialist support in their hometown. The clinic can't...
  13. PNWMom

    Dr Podell and Dr Lights gene study

    I talked to Dr Light at a Bateman Horne event recently. I don't know if he's specifically following up on the study you refer to, but he told me that he had recently submitted a proposal to the NIH in the ME/CFS field.
  14. PNWMom

    Rituximab and ME/CFS in the UK - MEA update

    When biomarkers and case definitions can't be agreed upon, how on earth can we know, for certain who, using rituxan privately or outside clinical trials, actually has what is thought of as ME/CFS/CFID/SEID? The complexity of neuroimmune and autoimmune disease is so vast and unknown, the...
  15. PNWMom

    CFS doctor in Germany or Czech republic

    Might I suggest that you join the Facebook group, Parents of Kids & Teens with ME/CFS and Related Illnesses? There are a lot of parents there from around the world that have so many wonderful ideas and help. You sound like you need the support. They are all so kind. The moderator is Sue Jackson...
  16. PNWMom

    CFS doctor in Germany or Czech republic

    It has been two years since my daughter saw Dr Bieger; I have no idea what he is charging now. As a private doctor, I believe his initial consultation is several hundred euro. He is very good about answering emails. If you have concerns or need exact costs, send him an email and ask him about...
  17. PNWMom

    CFS doctor in Germany or Czech republic

    My daughter did some preliminary diagnostics with this doc when we lived in Munich: http://dr-bieger.de/impressum/ We moved back to the US before he could initiate any treatment protocols, but I was impressed with how comprehensive his testing was (and expensive). I have no idea what it would...