- Messages
- 16
- Location
- Seattle, WA
Hi. I have been ill with ME (sudden, viral onset in 5/2007) for almost 4 years, severely ill for a year and a half. My worst problems are orthostatic intolerance and immune. Since 2009, I've had persistent jaw bone infections that have caused me to lose 1/8th of my jaw bone, reject grafts, and lose three teeth. It also looked to the oral surgeon as if my body was having an immune reaction to the jaw bone itself -- though at the last surgical culture no infection was present, my jaw bone remained inflamed and bleeding. My specialists have not been able to find the cause of this in particular: I have low natural killer cells and have had high titers of (over the years, at times) EBV, HHV-6, HHV-7. I got shingles when I was 28 during an ME flare. Anti-herpetic medicine has not helped me (though I've only tried Valtrex; my previous doctor felt my health was too delicate to undergo Valcyte). Immunovir and Inosine haven't, really, either. Only recently has Amantadine shown any progress at all. I've tested positive for XMRV. (It's worth noting that I became ill, with what looked clinically like a terrible case of mono, after a blood transfusion in 12/2006.)
I've seen good doctors (co-cure listed, wonderful doctors who kept me going these past years -- Dr. Howard Gandler in Portland, OR and Dr. Patrick Wood in Seattle / Renton, WA), but not super specialists. I have a local doctor willing to RX antiretrovirals if I decide to go that route. I don't have much money at all to spend on seeing either Dr. Klimas or going to the WPI (the traveling will wear on me considerably, too). Because my issues seem to be so heavily immune and I've mostly had my issues addressed by rheumatologists/pain docs, it seems to be that seeing Dr. Klimas, such a stellar immunologist/infectious disease doc, is the better bet. The immune issues are where I have question marks. Also, my health is really sliding and the WPI's opening has been being put off since I heard about them years ago. It would be so much easier for me to get to there, but I feel like I have no idea where I am on their waiting list, how much they will charge for a visit (I know I can afford Klimas's $894 office fee) --- and I think Dr. Klimas might be better suited to my needs anyway. It's just the 8 hour flight from Seattle. Ugh.
Is there anything my foggy brain is missing? I wish I could make the decision with all the information in hand. People with experience with Dr. Klimas (I've read through the threads!!) are welcome to chime in.
Thanks,
minerva
Ill with ME since 5/17/2007
I've seen good doctors (co-cure listed, wonderful doctors who kept me going these past years -- Dr. Howard Gandler in Portland, OR and Dr. Patrick Wood in Seattle / Renton, WA), but not super specialists. I have a local doctor willing to RX antiretrovirals if I decide to go that route. I don't have much money at all to spend on seeing either Dr. Klimas or going to the WPI (the traveling will wear on me considerably, too). Because my issues seem to be so heavily immune and I've mostly had my issues addressed by rheumatologists/pain docs, it seems to be that seeing Dr. Klimas, such a stellar immunologist/infectious disease doc, is the better bet. The immune issues are where I have question marks. Also, my health is really sliding and the WPI's opening has been being put off since I heard about them years ago. It would be so much easier for me to get to there, but I feel like I have no idea where I am on their waiting list, how much they will charge for a visit (I know I can afford Klimas's $894 office fee) --- and I think Dr. Klimas might be better suited to my needs anyway. It's just the 8 hour flight from Seattle. Ugh.
Is there anything my foggy brain is missing? I wish I could make the decision with all the information in hand. People with experience with Dr. Klimas (I've read through the threads!!) are welcome to chime in.
Thanks,
minerva
Ill with ME since 5/17/2007