• 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.

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I was dying. Now I am healed.

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I became ill and hospitalized in July 2014. And by March 2017, I was too debilitated to continue working my part time office job. In 2018, I was in a landmark clinical trial for MECFS led by a team of renowned researchers and a prominent MECFS physician. And in 2019, I entered the functional medicine program at a famous clinic in Cleveland. I had been seen by many other physician specialists renowned in their fields, as well as naturopathic and alternative health practitioners— in total I...
Understanding ME/CFS Today: A Clinical & Research Approach Join the Institute for Neuro-Immune Medicine (INIM) at Nova Southeastern University to learn from the institute's clinicians and researchers as they discuss the clinical and research approach to ME/CFS. Irina Rozenfeld, MSHS, MSN, ANP-BC, APRN - Nurse Practitioner Maria Vera-Nunez, M.D., MSBI, DABOIM, IFMCP - Physician Irma Rey, M.D. - Physician Travis Craddock, Ph.D. - Director of the Clinical Systems Biology Group Time May 15...
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I had my follow-up appointment with Dr. Rey at the Institue of Neuro-Immune Medicine at Nova Southeastern University. I think Dr. Rey is very knowledgeable and caring. They take Medicare Insurance, too! Not many ME/CFS Specialists do. There were 5 med students with Dr. Rey (with my permission). It is good to see a new flock of doctors going into this field. Dr. Rey believes ME/CFS is an environmental illness. We "canaries" absorb toxins throughout our lives and do not detox them. Here is...
I cite this study translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1392-z because all my many health problems began with an enterovirus. And this trial gave participants Dx w/MECFS antibiotic and probiotic treatments and diet to address enterococci and streptococci gut dysbiosis. I would like to try this protocol of 400mg erythromycin 2x/day alternating with the probiotic — one week on antibiotic alternating with one week on probiotic for 3-months and the carbohydrate...
The Administrative Law Judge rendered a fully favorable decision back in early May. But he did not approve my attorney's fee agreement. He stated, "You appointed more than one representative from a law firm, or other business; all your representatives did not sign a single fee agreement; and the representative(s) who did not sign the fee agreement, did not waive charging and collecting a fee." What happened is I signed a fee agreement with the owner of the law firm. Later, they appointed an...
I recently went to the Cleveland Clinic functional medicine group and consulted with Dr. Alice Prescott. A patient told me that Dr. Prescott helped him a great deal. Dr. Prescott believes that I have MCAS mast cell activation syndrome, which I had suspected but since neither my hematologist or allergist locally are familiar with it I kind of forgot about it. So I was pleasantly surprised when Dr. Prescott brought it up. She ordered test but in the meantime told me to increase my...
Many PwME complain of episodes of feeling as if they are running a fever although body temperature read by a thermometer is normal. I have these episodes. Often they are accompanied by chills exactly like one would experience with a high-grade fever. Other times I feel as if my body is hot, as if burning up with fever. Yet people who touch me say that I feel normal. Sometimes I will flush. Both Dr. Susan Levine and Dr. Irma Rey told me they believe it is the virus reactivating (at least in...
Lactic Acid, aka Lactate, is found at elevated levels in PwME. POINT You usually don’t detect this [lactate] in the brain at all – and when you do it usually means the chemical reactions in the brain are happening so fast that the blood supply cannot keep up with the demand for oxygen. When this happens, cells switch to an alternative, less efficient, way of producing energy. This alternative pathway produces lactate as a by-product. This is similar to when athletes run too fast and burn...
I've been following the work of Doris Loh. She just released her latest research this morning about Vitamin C / ascorbic acid for mitochondrial functioning, oxidative stress, redox balancing, etc. You can read the article here https://www.evolutamente.it/vitamin-c-special-edition-primordial-octane-fuel/?fbclid=IwAR3JnpDHjUHu7RvOfHjIfP5Q2vVtrxvdWxsYqFdkR2G83AFMI3PqfeNdLSM Doris suggested that I use ascorbic acid 1/8 tsp EVERY HOUR. Then try to up to 1 g or 1/4 tsp every hour. Add it to 8oz...
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If you are not familiar with my story, I am being treated by Dr. Irma Rey at Nova Southeastern (in Dr. Klimas' group). Dr. Rey believes that ME/CFS is an environmental illness with MANY factors coming together to create the condition. I have tested off the charts for 2 molds, almost all heavy metals, and other chemical toxins, plus high titers for EBV, HHV6, Parvovirus, and a bunch of other stuff consistent with ME CFS (like my 2-day CPET results). I was ill but when I moved into my current...

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