Sep 25, 2012

The Lyme Saga...

The (stupidly indecisive) bottom line is that I may or may not have Lyme Disease.  Up until recently I was rationally and reasonably leaning toward "may not," but now I'm leaning toward "may."  Or rather, I'm leaning toward "may have some sort of tick borne illness."  One thing (among many) that stinks about Lyme Disease is that it can be really hard to say for sure whether you do or don't have it, or if you have had it, whether or not you are cured.  So I'm walking around going "I might have Lyme Disease," the Cat Daddy's going "You don't have Lyme Disease!" and as far as my doctor's concerned the jury is still out.

I'm actually kind of mad about it right now, because as time goes on and I'm not really getting worse, but definitely not getting better, it's hard to know what to believe or trust.  I tried detailing a timeline for your perusal and general enjoyment, but it made me want to poke out my eyeballs, and if I wanted to poke out my own eyeballs, there's no way you'd have wanted to sit through reading it.  Here's the short version:  based on all the reading I've done on the internet (allowing for extremes on both ends of the Lyme debate and trying to weave together a healthy balance of conservative Western medicine and alternative-medicine theories as well), I seem to be a good candidate for some antibiotics, particularly as time is going on and my vague and mild, yet persistent, symptoms are not going away.  I've been to two docs, had two negative blood tests (no surprise there--even people who do have Lyme disease often come up negative on the blood tests), been declared otherwise healthy as a horse, and still don't feel well.  My new doc here did a short run of antibiotics, which seemed to help while I was on them, but after stopping them I started feeling sick again.

I really, really want to trust in my doc's assessment, but now I'm to the point where she is still saying "wait & see, it might be a virus or sinus infection" and I'm all, "No really, I'm not getting better, and this is too long to feel sick, even if I'm not lying flat on the couch all the time, because I'd really rather it not get to that point." And she is kind and professional, but firm about waiting longer. 

When it gets to this point I start to feel nervous and unheard.  It happened 10 years ago, when I was still searching for the cause of what I now know is my stubborn sacrum (SI joint dysfunction).  Several doctors in succession said "No you're fine, here's some tylenol," but I knew (KNEW) in my gut that something wasn't right, and that continuing to wait, at best, would not be helpful.  In the end I was right, and eventually I found the right doc who found the problem, and while I deal with my stubborn sacrum to this day, it's not the big mysterious problem it was before I knew what it was.

Now, I don't want to be "that patient" who runs around to different doctors until she finds one who will tell her what she wants to hear...but I have yet to be convinced that I'm being heard, so there's that tricky balance of respecting the docs, being that they do have all that education and experience and so on, and being willing to self-advocate (even if it means being seen as a pain in the tookus) when I know that something is not quite right.

So I'm thinking it's time for a second opinion.  And here's where medicine, relationships, and my nervous-issues all collide without making any sense--a lady I hardly know sent me a list of docs in the area who deal with Lyme (because I went ahead and asked for info even though I get nervous about revealing too much to new people who don't know me well), and one of the docs on there takes my insurance (which many, many "Lyme Literate" docs don't), and can get me in for an appointment. Tomorrow. 

And while a big part of me is fairly nervous about hearing the same thing I've been getting for the past several weeks...a small but fierce part of me is very hopeful indeed.  I figure if I'm seeing a doc with lots of experience with Lyme, just maybe I'll be able to hear them out and trust what they tell me, even if it isn't what I'm hoping to hear.  So I cried tiny tears of relief after I made the appointment.  I took control where I could, and I have hope that I will be heard. 

And now you are, for all intents & purposes, up to speed on my own personal Lyme saga.  So if I joke about it from here on out, you'll know where on earth I got that idea. 

And don't give me any guff!  After all, I might have Lyme Disease...

1 comment:

ginadewitt said...

Dear Kerri, I REALLY hope you get some more definitive answers today! Let me know what the Lyme Dr. says :)