• 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, 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.

Dr in Illinois

AlleyCat

Senior Member
Messages
105
Does anyone have a Dr in Illinois who treats ME/CFS? My Dr says she believes that's what I have and that it truly is a disease but has no clue what to do next with me. My insurance will not pay anything if I go out of state.
 

AlwaysTired

Senior Member
Messages
174
Does anyone have a Dr in Illinois who treats ME/CFS? My Dr says she believes that's what I have and that it truly is a disease but has no clue what to do next with me. My insurance will not pay anything if I go out of state.

I don't know anyone out there to recommend, but if she is willing to let you lead the way in terms of treatment and educating her then stick with her- at least until you find a specialist who will treat you. I had a GP who was very open to the research I had done and prescribed me stuff when I asked because he knew I knew a hell of a lot more about treatment than he did.

Now I am in Arizona and have access to all kinds of specialists thanks to Medicaid, and yet to have one willing to treat me for this, as they believe nothing will help it. Just got off the phone with an infectious disease doc who won't do anything for me even though I told her that a lot of people see improvements with antivirals (her reply was that they don't). I am now seriously considering moving back to where that GP is, even though I won't have insurance at least he's willing to help.

The good thing about GPs is they know they aren't experts on things like this and that makes them more receptive to collaborating with patients rather than contradicting them...