• 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. W

    PANDAS rabbit hole

    Dr. Edwards, I'd like your thoughts on the molecular mimicry hypothesis with respect to Rheumatic Fever and it's manifestations. http://www.sciencedirect.com/science/article/pii/S0531513105017188 Rheumatic fever is an autoimmune sequelae of a group A streptococcal infection where immune...
  2. W

    If medical establishment thinks PANDAS/PANS is a real disease what took so long for ME/CFS?

    For what it's worth, a few years ago I corresponded via email with Mady Hornig about a possible link between PANDAS and ME/CFS. My children presented with respective cases at the same time, my son with sudden onset PANDAS, and my daughter with ME/CFS. She told me then that this was an astute...
  3. W

    Intriguing biomedical research outlined in CAA newsletter (Winter 2013)

    Madeleine Cunningham PhD. (University of Oklahoma) I am intrigued by Dr Cunningham's involvement here. She is a founder of Moleculera Labs at the University of Oklahoma, and is a leading expert on PANDAS. I have a child diagnosed with PANDAS over ten years ago. Another child started her...
  4. W

    Autoimmune Inflammation and Monoamines

    I believe that Mady Hornig at Columbia, via the CFS Initiative, is investigating the nexus between neuroimmune disorders like ASD and PANDAS, and ME/CFS. I personally emailed her about my belief in a connection between the two, and she told me I was "astute".
  5. W

    Researchers, breakthrough in finding a cure for HIV “within months”.

    I am cautiously VERY optimistic about this! My daughter's former Dr., a DO, used to tell me that when they start figuring out how to really help HIV patients, it would also help those with ME/CFS......it made me wonder at the time what doctors REALLY know about the underlying cause(s). Thanks...
  6. W

    http://www.moleculera.com/

    What is PANDAS/PANS? PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) is an autoimmune disorder believed to be associated with, and initiated by, a streptococcal infection. The disorder presents itself in many forms, but typically can manifest...
  7. W

    Tell Congressional Legislators Blocking Natural Health: “You Can Do Better!”

    If only all we needed were free cell phones, we'd be doing great in Obama's America. As it stands, we live in a country I hardly recognize, with children that no one can help. If that sounds harsh, or bitter, so be it. I am bitter...
  8. W

    What about inherited immune deficiencies?

    In my children's case, they both have had ongoing complications from rheumatic fever that I am convinced predisposed them to CFS/ME. RF is on both sides of their family tree.
  9. W

    Could an Infection Cause Tourette's-Like Symptoms in Teenage Girls?

    Thanks for the link. Myalgic Encephalomyelitis by definition is a neuroimmune and/or neuro-endocrine-immune disorder, no?
  10. W

    Could an Infection Cause Tourette's-Like Symptoms in Teenage Girls?

    PS: the correct term, IMHO, is neuroimmune disease.
  11. W

    Could an Infection Cause Tourette's-Like Symptoms in Teenage Girls?

    I have email corresponded with Dr. Hornig and she is researching the relationship between PANDAS (now apparently PANS) and ME/CFS. My children became ill around the same time with MONO roughly ten years ago and neither have ever been the same. My son has been diagnosed with PANDAS and my...
  12. W

    In trying to prove XMRV link to interestitial cystitis I'm finding great info

    Great info...I will have my daughter give it a try. :Sign Thanks:
  13. W

    In trying to prove XMRV link to interestitial cystitis I'm finding great info

    Very interesting. My daughter had the IC symptoms and diagnosis before CFS/ME onset. Is the Ruta Graveolens available at GNC?