My Story: Part 1 – Diagnosis

I don’t know when I was infected with Lyme Disease. Based on my journey thus far, it would seem that I haven’t had it, say, since I was 2 years old (I would be in much worse shape), but in all likelihood, I did not just get bit 6 months ago (because of how sick I am, and how I have responded to treatment).  Looking back over my history, there are some clues that could mean that I already had Lyme when I was X years old, or Y years old; or those could just be coincidences – Lyme is the “Great Imitator,” after all. There’s no sure fire way to know.

The start of my Lyme For Sure story is a fever in September 2014. I had been very busy working as a doula all summer. We had sold our house under distress (scary neighbor situation) and were moving. My son had broken his leg. Things were very stressful. Then I got a fever that would not go away.

I stayed around 104°F for 5 days straight. My head was pounding, my neck was stiff, I had no appetite, and I was completely exhausted. After several days, I went to the doctor, who told me it was a bad viral infection. A week later, I was still sick, and a new symptom had appeared – large red and purple welts on my legs which were growing, multiplying, and spreading. They didn’t itch or really hurt, but they sure did scare the hell out of me. Back to the doctor I went, where a Lyme test was administered “just in case,” (even though the welts did not look like the signature bullseye) because some of my other symptoms could be Lyme, and this is Massachusetts – one of the top states for Lyme. I was told the welts were probably just erythema nodosom, which is basically a weird presentation of a virus, given a z-pack for what was probably a bad sinus infection (the head/neck pain) and sent on my way.

The z-pack helped a bit, but not much. About a week later I got a phone call that the Lyme Tests, ELISA & Western Blot, were positive. My primary care doctor prescribed me the routine course of antibiotics.

What I know now is that my positive Lyme Test is nearly akin to a Golden Ticket. The ELISA & Western Blot tests produce numerous false negatives. ELISA misses 35% of proven Lyme cultures. Some studies indicate that up to 50% of Lyme patients have received false negative test results. The average Lyme patient sees 5 doctors over 2 years before getting a diagnosis. So to be able to answer the question of “What is wrong with me?” within less than a month of being debilitated, was incredibly fortunate.

So very many patients are not so fortunate and suffer for years in terrible health, without answers. Chronic Lyme symptoms can lead to false diagnoses of Fibromyalgia, Chronic Fatigue Syndrome, MS, and ALS, just to name a few.

This is why more research and attention for Lyme Disease is so important. Estimates put the rate of infection in United States alone between 300,000 yearly on the low end, and 1,000,000 yearly on the high end.And we don’t even have an accurate test for diagnosis!

I began my course of antibiotics with an open mind. I did some research about Lyme Disease, but was pretty overwhelmed by what I found, so I stepped away from Google, and hoped for the best. “Hopefully I’ll be one of the ones who just gets better,” I thought to myself.

Up Next: Part 2 – Something Is Wrong

(reference source: www.ilads.org)

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