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    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. avreed

    How I recovered.

    HI Hugo. Is there any way I could contact you by email re: peptides? I'm about to begin this therapy in Florida but still have a few questions. The doctor suggested HS and PD but I'm not sure what the latter is other than neuro modulation. Would really appreciate a private convo if you're to it...
  2. avreed

    Is Atrantil the SIBO game changer it claims to be?

    Don't know if this thread is still ongoing. But a few cautions about the herbs in this product. Quebracho contains 7 different alkaloids which may a problem for people with liver issues. It's also highly astringent so may be a problem for those constipated. Some people are highly allergic to...
  3. avreed

    Ammonia/sulfur issues or start-up...how does one know?

    Thanks so much Ahmo. I have found that I have elevated ammonia related to gut bacterial infections and that when I'm on abx and have serum ammonia tested it is within normal range. However, reducing superoxide in any way possible, most notably as you describe with Riboflavin Phosphate, would be...
  4. avreed

    Ammonia/sulfur issues or start-up...how does one know?

    @Fredd. I have had worsening constipation over the last few years to the point where my digestive track is completely paralyzed. Cannot not have a bowel movement without laxative and have terrible malabsorption with probable gastroparesis as food sits in my stomach and moves very slowly down the...
  5. avreed

    Does anyone know when the Florida Neuro-Immune clinic will start seeing new patients again?

    Thanks for your edit and reply. I have seen multiple specialists, although not the particular ones she recommended as I do not live in Miami and was not helped by any of them. I do have a severe immune deficiency as documented by my local immunologist as CVID which I had received IVIG for in the...
  6. avreed

    Does anyone know when the Florida Neuro-Immune clinic will start seeing new patients again?

    Don't know if this topic is still open for discussion but I just returned from Miami after seeing Dr. Rey. I have multiple infections of the GI tract, urinary tract with kidney/bladder impairment, menopausal hormone imbalance as well as severe adrenal/thyroid issues and a life long stress...
  7. avreed

    1 disorder which traditional medicine can't cure, and alternative medicine can?

    Catseye - I see that you are in SW Florida and from your posts have a very clued in doctor. I have spent the last 3 years trying to find a competent doctor in Florida to no avail. I am on the SE coast but would be willing to travel anywhere in the state. I particularly like that your guy uses...
  8. avreed

    Any doctors in the U.S. who follow KDM's protocol?

    Hi Sushi, I'm also really interested in an MD in the States who is knowledgable about DeMeirleir's protocol. Bacterial, fungal and parasitic gut issues are destroying me and no MD (I've seen dozens and dozens) seem to be able to get a handle on it along with all the downstream effects on the...
  9. avreed

    Adrift in Arizona

    Thanks Creekee! I'll check out that website and see what others are saying about Grout. Please feel free to use "black hole of the universe for practitioners" in any circumstance that warrants it. I'm sure Florida does not have an exclusive on hopelessly inept and unenlightened practitioners...
  10. avreed

    Adrift in Arizona

    Hello to all in Arizona, I live in Florida and was considering traveling to Scottsdale to see Dr. Martha Grout at http://www.arizonaadvancedmedicine.com. The website is enormous with lots of information on many illnesses and disease topics. She sounds smart and appears to be up on some...
  11. avreed

    Why Does B12 Cause Negative Effects?

    In rare instances, when B12 supplementation is started to to correct a deficiency, polycythemia can emerge. This happened to me and I would get very sleepy with severe shortness of breath and sometimes chest pain. My RBC, hemoglobin and hemacrit became very elevated. This is extremely dangerous...
  12. avreed

    A Tribute To Rich Van Konynenburg

    What a sudden and terrible shock. Rich was a passionate medical detective who never tired of deconstructing the web of biochemical mystery. He was a man with great heart and even greater compassion for all those who suffered with the devastation of CFIDS. I have kept a large file of all our...
  13. avreed

    A Tribute To Rich Van Konynenburg

    What a sudden and terrible shock. Rich was a passionate medical detective who never tired of deconstructing the web of biochemical mystery. He was a man with great heart and even greater compassion for all those who suffered with the devastation of CFIDS. I have kept a large file of all our...