Looks like it was LYME the whole time
UPDATE: It turns out I did not have Lyme Disease. I’m leaving this up for history’s sake. In the future I’m hoping to write a research based articles with some of the difficulties with Lyme diagnosis and treatment. Stay tuned, I’ll post it here when it is done.
Since my last post I’ve been ridiculously sick, and being my stubborn self I still made the decision to go back to work. This past week I was at my breaking point with a low grade fever, through the floor fatigue, tremors, severe GI issues and pain, chronic pain, I could go on …
Lyme has been on the table since the spring of 2014 when this all began with sudden severe allergies followed by Meniere’s, then the intractable migraines with severe neurological symptoms. My test came back negative, and there was so much going on we just moved on. However, my PCP never completely dropped the idea.
At my appointment on Monday when he wanted to test for Lyme yet again I had to hold back a groan. Except this time he wanted to do the Western blot. Last night, Friday, I get the following e-mail from him:
You have antibodies to the organism that causes Lyme disease. Not enough ” bands” to satisfy the criteria for The CDC, but good enough for me and most people who study and treat Lyme disease. The test is not very good, and you have antibodies and a lot a symptoms. I’ll send an antibiotic to your pharmacy. Don’t take it on an empty stomach.
There are likely going to be MANY posts in the future on all the nastiness going on within the CDC and the IDSA regarding Lyme disease. In short most of the handful the doctors who write the guidelines on Lyme for the CDC and IDSA have severe conflicts of interest. Including holding patents on Lyme, having been contracted by insurance companies, and other nasty things. Connecticut even filed a lawsuit against the IDSA1.
The CDC & IDSA madness around chronic Lyme disease and late Lyme made it extremely difficult for me to recognize that I have it. Since my biggest problems were not fatigue and pain.
However, vertigo, severe headaches, neurological issues, constipation, abdominal adhesions, and pretty much everything that has been destroying my life are also symptoms of Lyme.
I’ll hopefully be a bit more articulate and well informed once I’ve had some time to sort this mess out. Both the mess in my body, and the political mess surrounding Lyme. I am just happy it looks like I have a diagnosis.