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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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Has anyone been to the clinic? I think from what I read it is pretty expensive. Does anyone know of the treatment she has?
If I have posted in wrong area please move me.
I am a long standing patient of Dr. Klimas and live in South Florida. Her waiting list is close to 9 months for new patients, although the University of Miami has recently hired an additional CFS physician to work with Nancy and they will likely be able to add patient volume to the practice. At my last appointment, Klimas advocated waiting until there was a more standardized test for XMRV, which she thought would be available in the next year.
Nancy does perform some expensive immunological testing to evaluate viral titers, natural killer cell activity, cytokine expression, etc. I can't speak for all of her treatment plans but she has a lot of tricks up her sleeve, including immune modulators, anti-viral drugs, sleep drugs, etc. I've had a lot of improvement with her protocols over a period of time. You will want to have a primary care physician working with you and her who can monitor you on a regular basis. She is not easily accessible between visits and I typically see her two to three times each year.
Has anyone here been to the private clinic yet, or know how long the wait is there? I would have loved to get in any way I could when I first got sick.