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There is still so much about Lyme disease and tick borne co-infections that we just don’t understand When I mentioned Lyme Disease to Hillary Clinton at a recent town hall event, she replied with “Yes, that needs to be looked into.” – take that for what it’s worth, but at least it’s somewhere on a radar. Maybe.
My son, our first case of Lyme disease, was diagnosed in 2009. As many of you know I have a background in Microbiology and so I read and read and read about Lyme once we got his diagnosis. I couldn’t believe what I was reading. Up until then I had thought Lyme disease was a type of summer cold. I had no idea how destructive it was.
And I got angry.
New Hampshire has the highest number of reported cases of Lyme disease in the United States and yet there are legions of physicians in the state who wouldn’t know what Lyme disease was even if it bit them in the butt. Our largest health provider (Dartmouth Hitchcock) refuses to accept chronic Lyme. When I asked my son’s Pediatrician about his being diagnosed with chronic Lyme, she gave me that “oh, you’re just a confused mom” look and told me that they didn’t “treat chronic Lyme.”
Over the years I have become *that* Lyme lady. I read about someone having a mysterious illness and I leave a comment suggesting they get tested for chronic Lyme. I see an update on Facebook about someone’s kid who is in the hospital and they can’t figure out what’s going on.
“Test for Lyme,” I scream at my monitor. “Test for Lyme!!”
Why the heck is Lyme disease so difficult to confirm? To answer this you need to go on a microbiological level. When you are infected with Lyme disease your body does what it is supposed to do and it creates very specific antibodies against the infection. These antibodies can be measured and when they are there we know you are fighting an infection.
But here’s the problem. If you didn’t catch the initial infection and Lyme goes into its chronic phase (meaning that it now located inside joints, organ tissue, muscle and even the brain) your body realizes that those initial antibodies didn’t work and it creates a different type of antibody. If those antibodies are detected it’s an indication of a long-term Lyme infection. Once you have these long-term antibodies, they will always exist (it’s the same process we use to tell if you’ve had chicken-pox, we can test for the antibodies). Just because you have the long-term antibodies, it’s no guarantee you’ve got Lyme disease, it’s only an indication that you’ve been exposed to Lyme disease. But if you have a positive test and you have Lyme-like symptoms, and especially if you’ve never been treated for Lyme disease, it’s a pretty good indication that you’ve got chronic Lyme.
This is all on top of the common Western blot test not testing for the most common strains of Lyme disease (those that were going to go into the vaccine.) But that’s another post.
Based on my symptoms, I knew I had chronic Lyme. I had heart palpitations, muscle twitching, numbness from my knee down, shooting nerve pain, memory issues, and the list went on and on. The only way I could go up the stairs was to crawl. But my kids had to be tested and treated first (the IGenx test is not covered by insurance.)
I finally got my blood drawn for the IGenx test and in between the time from the draw to receiving the results I had a weird bubble/blister rash that went down my leg (in hindsight I think it was a spider bite.) I went to my regular doctor. Because there was a ring around the bite area, I asked the doc to run a common Western Blot test. (Note, even with a distinct ring around the bite area, my doc was not going to do the Lyme test, it took *me* asking for it in order for her to run it.)
The test came back negative.
A few days later I got a call from my LLMD with the results of my IGenx test. It was positive and showed that I had previously been exposed to Lyme. My body had made the Second type of antibodies. Based on that result and my symptoms my doctor started treating me with long-term antibiotics.
It took about 1.5 years on antibiotics, but when I was finished almost all of my symptoms had disappeared. Almost two years out, I am relatively symptom free.
But I know I still have Lyme disease. I know that the bacteria forms cysts. I know that it can cross the brain barrier and it lives on in my body. Which is why I have to be very careful. I watch my diet as much as possible. I watch my stress. I try to get exercise. I drink lots of water. Do I have permanent damage? Of course I do. That’s the price of not-treating a chronic infection.
I do my best to manage my chronic Lyme, because for now, that’s the best I can do.
If you have chronic “weird” symptoms. If you’ve been relatively healthy, but all of the sudden it’s “one thing after another.” If you fall into the high risk group – hiker, camper, live in the Northeast, or have pets that go outside, then do what you can to get the test. You can’t manage anything if you don’t know you have it.
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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com
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