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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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You don't know me, but I would love to see you and all get well. With a postiive for XMRV perhaps you want to pursue treatment of that retrovirus. At this point I don't think it will be too difficult to find a doctor in your area willing to treat you for a retrovirus. You could try someone who treats HIV or any of the top doctors for cfs such as Bell or Cheney or others. Even some of the Lyme specialists are getting on board. If you are up for reading some of the posts on this list about the validity of Mikovits' work and the invalidity of the European studies SEEMING to contradict her, I think you will be tempted to figure Klimas is missing the point here. You are spending a lot of time and money validating that you have all the symptoms of cfs. That will not treat you. You will just be poorer and at least as sick. The cfs world has been looking for a viral cause since the days of Elaine DeFreitas in the early 90s. I only wish I were in your shoes with a positive for XMRV. I would be getting treated for it yesterday.
yes Fybro it is the same for me, sorry Leaves that i jumped on the negative there - didn't mean to, just a reaction to the idea of waking up when i dont want to. ack! haha!
but i really do hope it works for you.
Y the saline IV? to help you get thru the 4 hours?
Did it help?
I assume insurance will pay a portion of the doctor fee, right? They just wont' pay over and above their customary rate.