Turns out even though I live near Boston, which is one of the medical hubs of the universe, there are almost no medical doctors (MDs) that treat CFS. I have found four total. One of whom is the famous Dr. Anthony Karmoroff. I actually called his office to see if I could get an appointment. I have to submit a referral letter from my primary along with my primary's observations and why he thinks I have CFS. The grand doc will review this information and determine if I am worthy to be seen by him. They have no idea when this actually might be but my guess is at least six months but hey I'm not in a rush or horribly sick or anything.
The second most famous person around here is Dr. Don Goldenberg who is actually a fibromyalgia specialist. Again at least a six month wait and I heard it is one of those talk to my interns first and I will only see you for ten minutes afterwards things. Is that worth a six month wait?
The other two docs aren't famous and probably have equally long wait times for visits. Hence I ended up at the Marino Center. It is an alternate healing center that specializes in Integrative Medicine and has an excellent reputation.
The doc I visited Tuesday not only has an MD but is board certified as a holistic medicine practitioner and an examiner (I'm guessing this is post mortem). He had an impressive array of certificates on his wall.
Weird visit though. I was cooked by the time I got there for my appointment. I had done too much that morning, ate, showered, dressed all in the same day and then traveled on top of it. So between my now encroaching ADD with a side of brain fog and his penchant for interrupting, the conversation got derailed more times than I could keep track of. I know I left important stuff out but hey that is why I take a packet along with me that includes my monthly symptom lists, all prior docs notes, all test results and a current med/supplement list. If he really reads this stuff he'll get a good idea of how my symptoms have progressed and changed over time and what I've been tested for so far despite my brain failing to follow our convoluted conversation.
The Marino Center is a collection of practitioners that actually talk with each other and coordinate care. This includes traditional western medicine, nutrition, supplements, chelation, IV therapy, acupuncture, massage, and probably stuff I've never heard of yet. After talking with him for an hour and then the exam during which my notorious head bobbing started, he recommended that I see my neurologist in addition to his running a cortisol panel for stress and more blood tests to see how I was metabolizing vitamin D. I'm also supposed to be taking my temp twice a day every day for a week but I keep forgetting. I will be meeting with him in a couple of weeks once all the test results are in.
My husband loves this guy. I've become cynical after the last couple of disasters with the endocrinologist disappearing off the face of the planet for over two weeks and the rheumetologist refusing to diagnose me on paper. Between my cynicism and my brain fog, I'm waiting to see what happens before I decide I like this guy.
I forgot to talk with him regarding his thoughts on XMRV. I would like to get this blood test done. I just heard that Quest labs just developed a 2 hour PCR that accurately detects XMRV. This is a huge improvement over the current method that takes over 30 days. However, I don't know if it is available yet. I believe they just applied for a patent. I'll have to check and get back to you on that. However, I digress.... back to the Marino doc
He does believe in CFS and FM. People tend to come to him after they can't find anyone else to treat them. I still don't quite know what to expect from him either in his treatment method or even his belief system regarding this illness. He was talking about stress causing my adrenals to crap out and making my body susceptible to this illness. He was also talking about my body not metabolizing vitamin D correctly. However, I'm not sure how he is going to treat either of these issues. I'm venturing into new territory here. He even mentioned behavioral ophthalmology which I am still researching.
Anyway, I left five more vials of blood in his lab. I have four test tubes I have to spit into at specific times of the day and then freeze and then post via FedEx. And, I have to take my body temp 3 hours after I get up and then six hours after I get up for five days running and send him the numbers. I have no idea why. I guess I'll know more when I see him again. This time I'll rest up first so that maybe our conversation will go a little smoother or at least I can attempt to keep it on track.