Friday, June 06, 2008

Lyme rant

Why do medical practitioners rely on notoriously unreliable tests to diagnose Lyme disease, instead of considering clinical presentation?

And why will they give out statin drugs like candy to "treat" high cholesterol, which is not even a disease, but yet someone like me with obvious symptoms of Lyme, a disease with potential for continued degradation of quality of life, among other things, who does not pass the unreliable tests, is refused any kind of treatment?

I am 41 years old. My joint pain came on suddenly a month ago, and was exactly like when I was diagnosed the first time. My left knee has been throbbing all week. You can't tell me it's just osteoarthritis, my joints "wearing out". But that's what my PA seems to think. Or is told what to think, what to diagnose. Of course, we wouldn't want to give out antibiotics willy nilly to someone who might need them, because it might cause resistant strains, meantime we're treating nearly our whole damn animal food supply with them, prophylactically. It's not an insurance cost issue either. I know a course of Doxycycline doesn't even meet my drug copay, so it's all out of pocket.

Why don't they want Lyme patients to be acknowledged, and to be treated?

I think I may have a battle ahead of me.


troutbirder said...

This bothers me too. This spring was over the top here for ticks. Had dozens on me alone on day. I feel safer trouting in the Beartooth-Absaroks grizzly county than deal with Lyme disease. Keep updating please. Thanks

MojoMan said...

When I had Lyme last summer, I came up positive on some locally-done quick test and was told they sent my sample to the Mayo Clinic (per routine) for more detailed testing (Western Blot Test) and was told it was positive for early stage Lyme. There was no dithering. The tests were clear and the Doxy cure swift (3 week course). Maybe things were more clear-cut because we caught it early. The scary part was that my doc had no idea what I had - even after all kinds of tests - until my wife reminded me to tell him about the ticks.

Rurality said...

Good grief! They actually refused you antibiotics?! Unreal.

Can you find another doctor?

barefoot gardener said...

That is unreal! Here we are in the heart of Lyme Country, and they won't listen to you even though you have had it before?! That is just WRONG!!!!

The ticks and skeeters have been really, really bad already this year, I think your PA had better get real about Lyme and West Nile, cuz we are looking at a really high probability of huge amounts of cases this year.

Deb said...

Troutbirder- The ticks have been God awful this year. I always laugh at the "prevention" measures the Department of Health quote so often. Living here, you simply cannot armor yourself from head to toe every time you step out the door.

Mojoman- What really gets me is that my first test (ELISA I think) was positive, then the Western blot "showed signs of antibodies from my previous infection, but not an active infection". So if this is my second bout with Lyme I'm basically screwed as far as testing goes because they assume antibodies are from a previous infection? I don't even know what stage my first bout with Lyme (4 years ago) was; I could have had it for years.

Rurality- I don't know if any doctor in our local system would treat it any differently. But it's not over yet with this PA- I like her as a person, she's also an organic farmer so we have a lot in common. I think I'll do a bit more research and try to discuss this further.

Barefoot- Yes, it is unreal. I mean, it should be pretty simple: clinical symptoms + probable tick exposure + ANY positive on a very unreliable test should mean treatment would not be unreasonable. Like I said, they push drugs for everything else, why are they so damn anal retentive about lab tests when it comes to something that is affecting my quality of life?

I hope to have a more positive update soon, after I do my homework and give the PA a call. Which is something I am definitely not good at, making phone calls and trying to argue my case. I usually end up near tears, with a really pathetic, shaky voice. Wish me luck.

pablo said...

Ain't no glamor in Lyme Disease. I keep reading again and again about how patients need to take control of their health care. My brother the doctor (but he's humble about it) says that he wishes his patients would give as much attention to their care.

Don't back down, girlfriend!

Deb said...

Pablo- With the vast resources of the Internet available, I think patients are, or should be, in charge now.

I just picked a deer tick off my arm the other day, so maybe I can take that for all it's worth...probable new infection.