Monday, September 21, 2009

Monkey Girl's Story....part 2

Christmas of 2007/08 was horrible.

My Infectious Disease Specialist ceremoniously dumped me as her patient and my symptoms were coming to a head.

I was breaking out in hives almost every day.
And I was resigned to the fact that I may never know what was going on with my body. I figured either I had contracted some horrible illness and/or my body mistakenly thought it was under attack so it was attacking my body (autoimmune). Either way I was fucked.

I went to a HMO hospital in Seattle and saw their rheumatoid specialist for testing.

We tested for Lupus, MS, rheumatoid arthritis, and a couple of other autoimmune diseases.

And although my blood work showed super high inflammation rates, I tested negative for everything. At this point she diagnosed me with fibromyalgia and recommended I start taking an antidepressant.

I burst into tears at the doctors office. Another non-diagnosis. Another doctor telling me that an antidepressant was the 'cure-all' for my problems.

I left disgusted and vowed never to step foot in that particular hospital/clinic again.

By this time, I felt like the world's oldest guinea pig. I'd had two thyroid surgeries in 6 months, because my thyroid had stopped working and started growing nodules at a rapid rate. I had no energy. I was breaking out in painful hives at least 3 times a week. I was on heavy doses of antihistamines. My joints and muscles were in terrible pain. My bouts of insomnia were the worst they'd ever been, and if I wasn't depressed at the beginning of this ordeal...I certainly was headed in that direction.

No one was interested in finding out why I was so sick.

My only support was my dear dear husband.
Who held my head and hand while I was on the toilet. Wiped the sweat from my forehead. Let me sleep 18 out of 24 hours a day...when I needed it. And who had started cooking and cleaning because I couldn't even get out of bed.

Then one day in February 2008, my ND who monitors my thyroid levels suggested we test for Lyme Disease. I was skeptical, I had a friend in California w/Lyme and I just didn't think that was my problem. She convinced me we had nothing to lose...and with angels looking out for me, she just happened to know that we should do the blood work through a lab in California (Igenex).

Not giving it much thought, we went about our daily routine and struggles.

And 3 weeks later she called. She asked me to sit down, which is never a good sign, and told me I'd tested positive for Lyme Disease. CDC positive no less.

You could have knocked me over with a feather.... be continued


Kim said...

Hey held your hand on the toilet? TRUE LOVE. What we would do with out our husbands? You get a medal for being CDC positive. I'm only positive with three bands, but also have babesia and bartonella. And while I have had my share of GI disturbances, they don't even come close to yours. I'm so, so, so sorry. I can't even imagine. And hives? Sheesh. I had psoriasis, which was pretty awful, but not compared to the symptoms people couldn't see. Anyway, can't wait to read more.

monkey girl said...

I tested positive for babesia and bartonella too!!! We're twins!!

Fatigue is my biggest enemy.

I truly think having Lyme has shown me how innately sexist doctors really are. If you have symptoms they can't see or confirm with tests, why do they think an antidepressant is going to solve them?

Alix said...

Wow, Monkey Girl, you have really been through it. It seems as though we each have our flavor of being totally downed by Lyme and totally let down by the medical system. I'm reading Connie Strasheim's book right now - the new one I should review soon on this site - and she interviewed one LLMD who said she thinks the explosion in alternative medicine that happened in the 80s and 90s was driven partially by undiagnosed Lyme patients. When someone has all the symptoms you do and you get labeled with a non disease like FM* and are dismissed by a prescription pad -- where else are people going to turn? That's why you were with the ND, right? That is exactly where I was when an ND suspected I had Lyme, too, and ran the tests at IGeneX.

Congrats on being CDC positive. That's huge. I got a secondary bulleye rash during treatment which I think makes me CDC positive, but my LLMD said it would have to have a tick in the middle for the CDC to take it as evidence. I think he was joking.

Looking forward to your next part....

* I do believe people have Fibromyalgia, but since it is a symptom-based diagnosis, it doesn't take into account the cause.

monkey girl said...

Isn't it funny, that being CDC positive is the one test Lyme patients want to pass?

Even though I'm CDC positive doesn't mean my insurance company has taken me any more seriously...they still won't cover treatment only meds.

As far as the ND, I'd always seen both western and eastern doctors. It has something to do with living in Asia. And even though I grew up in the Bay Area, my father's company had hubs in Japan, Hong Kong, Singapore and manufacturing in outside Manila.

I just don't think you (people in general) can ignore 3,000 years of chinese medicine.

I completely agree that people can have fibro, which I do, however, it's one of those diagnoses that I really fear doctors don't take seriously. If you haven't read the post Lyme disease and female hysteria (from LymeMD)? It really explained how I feel about those kind of doctors.


scroll for post header, it's a really good read.

Alix said...

That is a fantastic article and a great blog. I'm adding it to our blogroll unless Kim already beat me to it. She's so on it!

I heard a study described on NPR a few years back about the exact opposite doctor-seeking behavior in women. That study (I have no idea which one) found that women actually bear pain longer before seeking help from a doctor. The sad part of that study was that men and women doctors alike were more likely to take a man's complaints seriously and dismiss a woman's.

I think we all must have "the vapors."