Friday, January 13, 2006

Answers? We don't need no stinkin' answers!

About two months ago, Cait's Lyme doctor told her to stop all of her medications so that she could be re-tested to see what's up as far as the infection is concerned. After two years of treatment, she still felt lousy, so he wanted to determine whether she still had active infection or whether the infection had been controlled. Neither option is great.

If she still has active infection, it means all the standard (and many of the alternative and experimental) treatments have failed to address the root cause of the problem, and it's unclear what to do next. The doctor suggested that if this were the case, he'd want to go further into alternative therapies. Given some of the bizarre things she's tried, we're apprehensive about this scenario. But it would be nice to know that she still does have active infection, since that is a clear problem (even if the solution eludes us).

On the other hand, if the infection is no longer in play, it means that the fatigue and pain are essentially damage to her body left behind even after the bacteria have ceased their attack. Which might mean that they are here to stay. Nobody really knows what causes this condition. There's not a lot of consensus on what to do about post-Lyme issues, and many people in this position end up on a lot of pain and other medications. Some even have to go on disability as things worsen over time. However, her doctor knows a specialist in New Jersey who has had a lot of success working with patients with post-Lyme pain, and would send us there if that's what we're facing.

Yesterday, we had a follow up appointment with Dr. Specialist to review the test results. Neither option was very appealing, as both have little to offer in the way of immediate relief or even much hope. But we were both looking forward to the appointment, in a way, because - finally - after two years of mountains of pills, injections, bills, pain, frustration, and treks to various doctor's offices, we were going to get an answer.

Regular AdProb readers will not be surprised in the least to learn that our expectations were dashed the moment we walked in the door. Cait had three tests. One showed evidence of active infection. Another, usually very reliable, gave results that indicate the infection is essentially gone. The results of the third, and I quote from the lab sheet: "Inconclusive." At this, Dr. Specialist basically threw his hands up in the air and said, "I don't know where to go next." Which is pretty much the situation we've been in for about a year.

Because the pain has become Cait's major symptom, he is sending her to the doctor in New Jersey even though the tests are unclear. We were lucky to get an appointment a few weeks from now (Dr. Specialist thought we wouldn't get in until March - no offence, Jerseyites, but we DON'T want Harpo to be born in NJ!!) and are hopeful that a new doctor, with a new angle, may offer some solutions - even if we don't get any goddamn answers.

11 Comments:

  • Oh, for the love of all that's pure and holy! Haven't you two been through enough?

    By Blogger Emilin, at 2:15 PM  

  • How difficult!

    Have you guys explored the NIH? I don't know what is going on there currently re this issue but when I did an internship there on the Allergy and Infectious Diseases unit seven years ago (how in the world was it that long ago!) They were definitely doing research and treatment... just a thought...

    By Blogger Jennifer, at 2:38 PM  

  • We look into NIH periodically, because they are always adding new studies, but to date Cait has not fit the requirements for any of the protocols.

    By Blogger Jen, at 3:07 PM  

  • Ugh. I am SO sorry and can totally imagine how frustrated you both must be. I can also sympathize with fatigue and pain and I hope that this new doctor helps alleviate some of it.
    Best to you, Cait.

    By Anonymous bri, at 3:47 PM  

  • Argh! Arg Arg ARRRRGH!

    How utterly frustrating. I hope Dr Uber Duber Specialist in NJ will be helpful.

    By Anonymous Liza, at 4:09 PM  

  • &^%T$@#&%^$(*^(*&$%$%^!!!!!!!

    Where in "Joisey?"

    The magnet room (now complete with ACTUAL sleeper-sofa and A/C) is yours.

    xoxox,
    S

    By Blogger Shelli, at 4:15 PM  

  • I'm sorry to hear that.

    An old family friend found out a few years back that what they'd thought was "just" a bout of encephalitis and meningitis years before was actually Lyme-related.

    She has permanent post-Lyme damage. She's participated in some studies, but so far no luck.

    Working against her was the fact that she was infected as a child, before it was beleived Lyme had reached her area, and so was infected upwards of 30 years before they realized this...

    I hope you guys can get some answers. This is tough stuff.

    By Anonymous Sara, at 5:09 PM  

  • That sucks, but I hope Dr New Jersey can help.

    By Blogger Kim, at 2:37 AM  

  • Good gracious that seriously sucks! Thats just plain weird, either there are bacteria there, or there aren't? Right? How ridiculously annoying and frustrating. I'm so sorry these tests are being so useless.

    I hope Dr. Joisey can give you some answers, at the very least.

    By Anonymous jenny, at 5:32 AM  

  • I've had Lyme's for almost 20 years. I've had mixed results to the test off and on for about 4 years now. I agree, there's no end to this situation. I have come to my own conclusions that mine has left permanent damage, I'm exhausted, depressed, and hurt. You end up just accepting the situation. ((((Hugs)))) to you and Cait.

    By Anonymous Mabel, at 11:13 AM  

  • I've had Lyme's for almost 20 years. I've had mixed results to the test off and on for about 4 years now. I agree, there's no end to this situation. I have come to my own conclusions that mine has left permanent damage, I'm exhausted, depressed, and hurt. You end up just accepting the situation. ((((Hugs)))) to you and Cait.

    By Anonymous Mabel, at 11:13 AM  

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