Hi! That video by Dr. Klimas is SOOOO helpful!
I also recently started with a new doctor (s) and this is what I did.
1) Called around to all the primary care doctors and asked if they had experience dealing with CFS. Found a doctor who said she has patients, and though she doesn't treat directly, she gives referrals out for CFS patients.
2) Picked a specialist (Infectious Disease) off the co-cure list, and saw them for an appointment BEFORE going to my new primary care doctor. ($190 out of pocket) He gave me prescriptions, lists of tests he wanted, and days to follow up.
3) Decided I liked the specialist (versus taking a randonm referral from my PC doctor) and would want to go to him.
4) Made an appoinment with my primary care doctor.
4) Went to my primary care doctor, explained I was under treatment by specialist, gave her lists of what needed to be done, what he thought -- and she added on a few of her own. Also, she gave me the referral.
5) Now in the process of waiting for test results. I plan to go back to both doctors in a month.
So, after ten years - I actually feel that I am under a treatment team! That being said, its a TON of work - calling doctors, going to appointments - and luckily my husband has been incredibly helpful.
I also listed to Klimas and said things like, "I know this disease is a lot of work. I'm willing to make extra appointments - manage each symptom individually - blah blah blah." I was also VERY firm with both doctors, that I have CFS and that I was not DEPRESSED, and that my goal in these appointments is to get better and get my life back!" My husband says I am a little too firm, but after doctors who told me to try meditation, I feel I have to be! Luckily, alot has changed - and in truth. my doctors have been fabulously understanding. But again, I did most of the leg work for the primary care...
Oh, and I bring all my paperwork from the last 10 years in with me, too. (Just in case).
I hope this helps! GOOD LUCK! The most important thing you can do for yourself is find a great team, and doctor! And again, GOOD LUCK!!!
PS In terms of getting all new tests. I actually got from VIP, as well as an XMRV test, the Mycoplasma, Human Herpes, EBV, Lyme and all the other big offenders. You can easily print up that from their site, and have your doctor sign off on what you want. Literally, that's what I did. Also, the specialist decided on his own that he wanted me to take some more tests to (once again) rule out all the other offenders like RA, Lupus, Addison's, Thyroid Problems, sleep issues etc. So, I got that without even having to ask for it.