Seeing Dr. Klimas or going to the WPI?

[minerva]

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

 

[Hope123]

Klimas is one of my ME/CFS docs.

Your jawbone situation sounds different from my own and others' experiences I've heard of with ME/CFS.

One thought would be to call or e-mail Klimas' private clinic and ask them what they think. Before I saw her and was a patient, I asked her a question once and she was kind enough to reply in some detail although she is very busy so I don't know if she can still do this. Her office might be able to give you estimates on costs before you go depending on what you need. The wait list is short for her private clinic.

I had thought about seeing Peterson but the wait list was very long and now with the WPI, I'm not sure how experienced their clinical (not research) staff will be with ME/CFS if Peterson isn't there.

If money is tight, one thought would be to ask your docs to refer you to a local immunologist -- if need be, ask for a referral to the University of Washington if that hasn't been done.

 

[Esther12]

I agree with Hope that your jaw problem does not sound normal. Do you think you'll be able to get anywhere with your jaw specialist? Have them suggest someone near you for the jaw specific problems, and hope it leads on to something for the CFS? To me, that sounds like your most solid lead... but it could be you've already taken that as far as it will go.

 

[Emmanuelle]

Maybe your doctor could run the tests that Dr. Klimas usually does-- maybe even consult with her?

Also, I'm thinking about posts seen here about "cavitations"-- from pulled teeth and root canals, which some say can cause neurological issues. (I believe it was posted by Ian.)

 

[minerva]

Unfortunately, I think the jaw problem has been taken as far as it's going to go -- the jaw surgeon has demanded I need more immunological testing and believes what he encountered could be at the core of what's making me ill, my doctors say I've already had everything they can do, the immunology department has refused to accept a referral of me, etc. Dr. Klimas has been very understanding and available -- I'll be able to see her at the beginning of next month (April).

It's very frustrating -- I know my jaw problems and immunological problems are outside the realm of ME. It seems like because I have chronic illness and pain in my records, I haven't been able to be treated for them. Have been unable to schedule with infectious disease doctors or immunologists, even when referred-- and I'm a really good advocate for myself. I'd had the face pain for a YEAR when I had jaw surgery the first time -- had been diagnosed with trigeminal neuralgia and then atypical face pain (I always had low grade fevers, so they never checked for jaw infection). The dentist I saw for the jaw pain I was in before the infection first became surgical (who refused to order me a CT scan several times when my face became swollen and tender) told the ER doctors he believed the sudden decay and pain I experienced were the result of meth use and "typical meth mouth." (It was a clinic that accepted low income insurance -- I don't use meth. Ugh. Just ugh.)

If I'd gotten a surgical intervention sooner, I'd still have those teeth. My oral surgeon sounded the alarm that I had severe immune problems and did the best he could to ge a local immunologist to take me on, but it's just gotten me nowhere. The immunologist that refused to see me referred me to a rheumatologist who gave me a half-hearted tender points exam and told me I had fibromyalgia, which wasn't exactly the issue. I guess I think I need to take my own next step here too. I get such bizzare-o world reactions from doctors because of my chronic illness. I've had to fight to be treated for anaphylactic shock and, in the same situation, called drug seeking re: Benadryl.

I'm fairly scared of doctors, at this point!

minerva
ill with ME since 5/17/2007

 

[Esther12]

Sorry to hear your local doctors aren't interested. Even when your jaw surgeon communicates with them?

Good luck with it all.

 

[sensing progress]

I recommend Dr. Klimas (I am a patient of hers). You can likely get in to see her within a month or two. Its true its a long flight to Miami but I found I actually felt much better while in FL for whatever reason. Also, one of the areas Dr. Klimas really emphasizes is identifying and treating orthostatic intolerance. She will have you do a BP/pulse log for a week prior to your app't to look for signs of POTS and NMH. She knows how to treat orthostatic issues and how important they are. While I was there I had to give a lot of blood and she insisted on me getting a IV liter of saline before leaving (which really helped).

Regarding immune system function, it seems that Dr. Klimas' first line treatment to try is Immunovir, mostly due to cost and low side effect profile I think. Since you've already tried it, I'm not sure what she would prescribe.

 

[Marg]

[Regarding immune system function, it seems that Dr. Klimas' first line treatment to try is Immunovir, mostly due to cost and low side effect profile I think. Since you've already tried it, I'm not sure what she would prescribe.[/QUOTE]

I highly recommend Dr. Klimas. I did not know I had OI (POTS) and neither did any of the doctors, some well known I went to. She knew before the tilt table test according to the bp log I sent. I think it is under control now. I just sent a log yesterday. She looked at my immune system like no other, said EVB and HHV6 had reactivated. No one ever checked any of that. My killer cells were only 5% of what they should be and cytokines 25% too many. I have been on Imunivor since I was there last July and feeling a lot better. I am to order more and how to have an office visit in the summer. She will do phone consults or did so maybe you could try that. I think they are $125 for 1/2 hour.

I would say go but the WPI will be good too. I think I would give them time to get their feet off the ground though.

 

[jsfm]

I have a local doctor willing to RX antiretrovirals if I decide to go that route.

I am a little late on seeing this post but I thought it is worth a try. By chance who do you see in the Seattle area that is willling to prescribe antivirals? I have not found anyone.

 

[Little Bluestem]

@minerva has not been around since March of 2013. I doubt that she will answer.

 

[Daffodil]

I am a little late on seeing this post but I thought it is worth a try. By chance who do you see in the Seattle area that is willling to prescribe antivirals? I have not found anyone.

dr susan marra is a lyme doc in seattle..maybe she would be open minded enough to rx them...but i have never seen her. sometimes you can just call the office and ask if she ever works with antivirals if tests show viral activity.

 

[jsfm]

dr susan marra is a lyme doc in seattle..maybe she would be open minded enough to rx them...but i have never seen her. sometimes you can just call the office and ask if she ever works with antivirals if tests show viral activity.

Thank you @Daffodil.