Friday, March 13, 2009

Diagnosis du jour: Lyme Disease

This post originally appeared on gratitude365.

If you've been reading this blog for any length of time, I often subject you to the state of my health. Today is no exception. And before I get to the diagnosis du jour, a recap the last nine months:

Let's start with an emergency c-section in April. It took a month to get off the Vicocin. In May, I got so sick, in hindsight I believe it was Salmonella poisoning (remember the whole tomato scare)? In June I had mastitis. In July I had strep throat. In August, my dentist took a crown off an old root canal, cleaned the decay and put a new crown on. In the same week, I had the Mirena IUD put in. Three days later I had the OBGYN take it out. I couldn't breathe. I couldn't think. I felt weak and confused. Meanwhile I broke out in a rash on my shins. My primary care physician thought it was an allergic reaction to the Mirena.

Two months later, I still had the rash. And I kept getting pink eye (or so I thought). I go to the dermatologist, he says the rash is psoriasis. He tells me not to go crazy reading about it on the Internet (yeah right). So, I end up on the National Psoriasis Foundation site and stumbled upon Psoriatic Arthritis, which explains my eye inflammation and the random nerve/muscle/joint pain I'd been having. In October, a rheumatologist and an MRI confirm PsA. And so the struggle began to get JB off the boob and onto a bottle (a whole diatribe in itself), so that I could go on iummosuppressants.

I started to have breathing problems and chest pains, which landed me in the ER, and a subsequent VQ scan (I literally had to breathe radioactive gas), a chest CT, and a pulmonary function test. Until I could wean JB, they started me on a course of prednisone, which calmed my breathing down, but made my psoriasis crazy--it spread and soon I was covered from head to toe in red scales. Remember the story of Job? That was me, except I still had my family and friends, thankfully.

The day before I was supposed to learn how to inject myself with Humira (which, BTW, without insurance is $1700 a month), the new doctor I'd been chasing, returned my call. I'll spare you the series of synchronistic events that lead me to him, but seriously, a Godsend. Believing, like me, that this whole thing is infectious related (I mean, look how many bacterial infections I've had), he started me on antibiotics in November and told me to have my tooth pulled, which I did the week before Thanksgiving. The oral surgeon likened the roots to dry rot. He is one of the few mainstream doctors I've talked to that considered a connection between an on-going infection--perhaps the tooth--and my arthritis. He, ironically, at the time mentioned Lyme Arthritis to me. Ding, ding, ding. Six weeks later, the labs and new doc (a three-hour car drive away), confirm Lyme.

So here I am. It’s been two weeks or so that I’ve lived with the Lyme diagnosis. Which doesn't mean I don't necessarily have PsA, along with Ankylosing Spondylitis, but it does mean that Lyme could be the trigger for for these autoimmune conditions. And the theory is that if you can get rid of the bacteria in your system, then perhaps you can stop the autoimmune attack. And that to me sounds more encouraging than the path I was going down of steroids, NSAIDs, and DMARDs, (disease modifying anti rheumatologic drugs) indefinitely. I read a statistic that it can take 22 months and seven doctors to be diagnosed with Lyme. I feel fortunate it didn't take me that long.

I don't know a lot about Lyme yet, but I'm starting to shift my perspective from preventing disease progression to hoping for a cure. I'm so grateful for everyone who has and continues to come along side me to listen, lament, and love. Especially, my dear husband. And even Ry-Ry said to me the other day, "you fragile, mommy?" And to that, I'm reminded of a Phillips Brooks quote, “I do not pray for a lighter load, but for a stronger back.” Because with with a 3.5 year old, a 9 month-old, and a high maintenance cat, my load isn't getting lighter anytime soon.

If anyone out there reading this has PsA, AS, or Lyme, please let me know via email or commenting on this post. I'd love to hear how you're managing and maybe compare notes.


Anonymous said...

Hi Kim - Glad you are writing this blog. My brother was diagnosed with Lyme and shared many of your symptoms and experiences. I'll send the link his way. I'll check back soon! Thanks again.

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