In 2007 as I was planting a row of leland cyprus trees (which are now huge) to one day block out the massive truck sales operation right behind our house a little stowaway deer tick, or flea hopped on my forearm long enough to make a mess out of my life. I didn't feel the bite, but then again most people don't. I did get a nasty, ugly rash where the bite occurred. A week later I went to the ER where they gave me two weeks of doxycycline, the standard CDC approved treatment as a precaution since my blood tests came up negative.
I thought… cool! Lyme disease isn't really a disease, but a little nuisance like strep throat! They did not find borrelia burgdorferi which we call Lyme disease, but it was there, tucked under my cells like a wolverine measuring its prey. I was wrong as are most physicians and people who have a range of misconceptions and bad information about what this nasty little organism is and what it does. It plays with your body like microscopic leeches that hook up to your blood cells and tissues. So even if you feel ok after a good round of antibiotics, these little guys tend to come back, play with your body like a marionette, and then go undetected by our standard cookie cutter blood tests that only look for the antibodies the body produces to fight off infections.
They also have sometimes several tag along friends that join them. Ever heard the stereotype that the best friend of the hottest girl in school also happens to be the ugliest. If you think of Lyme as the hot topic, all of those ugly friends go even more undetected and are the root of more havoc and issues with the human body. My primary care physician did not recommend the specialist since he was 100% convinced I did not have Lyme. When he started talking chronic fatigued, I stopped listening. If my rash and my fatigue happened to be a duck, I would heard very loud quacking.
So I saw the specialist where I ended up having more blood than I can remember since I was very young when mono, mumps, and chicken pox decided to land on me at the same fricken' time. These were shipped out to a bout 4 different private lab facilities to run specialized tests that only a couple of these labs performed. I went on hard core antibiotics for another six weeks. At my follow up we looked at a picture of bartonella – the same bacteria that causes cat scratch fever and other serious issues.
I went on even more intense antibiotics and these punched me hard. So hard that at about week six of a 12 week treatment I could barely walk my feet and tendons hurt so bad – a side effect of taking levaquil. After this round of treatment, my body started to get back to where it was, and then it started to get better and better. I felt as good as I did before that damn tick bit me several months prior.
At a wellness visit after my treatments I told him I saw the specialist anyway. He said, "And they didn't find anything?" This was the specialist he recommended I not go to since I "did not have Lyme." I told he that we actually got a picture of one of the problems. His response was, "Well, that's why we have specialists." We had a picture. Photographic evidence! Take that Dr. Primary Care and all of your managed care FAIL!
But now I am about at a year after that treatment ended and I am consistently dizzy, chronically fatigued, fogged out in the brain, and no amount of sleep seems to allow me to get a handle on it. Time for another evaluation. Time to start filing eviction notices that my bacterial company are no longer welcome in my body.
The thing that bothers me is that if I did not have the cash money to pay for these treatments, no insurance company would flat the bill. There is a political debate between infectious disease professionals and the AMA and insurance companies where one side insists that you can beat Lyme and all of its wicked little friends with more aggressive and lengthier treatments – costly treatments. The other side says that this is dangerous and experimental. I cannot wait for insurance to get their shit together to figure this out. I need to be aggressive to get this crap out my system. I know that being aggressive works, despite the short-term pain. Time to get my guns cleaned and loaded for another round to beat this thing – again.
I plan to go see the film Under Our Skin this weekend as inspiration to get on the horse and ride with the cavalry again. This film uncovers all of the politics and myths that make Lyme sufferers think they are crazy (as the system would rather them believe) and hopeless in their physical and mental misery. This is a political problem, not a medical one anymore. Stand up and fight it.
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