“Chels, I really think you should get tested for LYME.”
That’s where we left off in Part 1 of Chelsea’s post. And now… Part 2.
I kind of balked at it. First of all, I had to pay for the test up front to be processed by IGeneX (which I now know is the place where everyone who is anyone wants to have their blood seen like it’s the hottest nightclub). Second of all, I didn’t think I had any symptoms that matched. I mean, I never developed a bull’s eye rash, and that has been drilled into my head as the tell-all sign (which I now know happens only in 20-30% of cases). I agreed to do it because I just wanted to check it off of my long list of diseases that have been ruled out.
When I saw my naturopath on January 21st, she went through the results with me and confirmed that I did indeed have Lyme disease. My IgG antibody test lit up like a Christmas tree and put me in the territory of actually legitimately reporting my case to the CDC.
I sat on the diagnosis and didn’t tell many people – maybe four initially. I did some reading and reassured myself that this wasn’t another misdiagnosis. And then I sat down and immediately wrote letters to 10 of the now 46 doctors I’ve seen, telling them about my diagnosis, when I think I picked up a tick, and included my test results. Some of them I thanked for trying to improve the quality of my life. Others I asked to keep my case in mind for if and when they see another oddball case walk or hobble through their door. I don’t feel especially litigious about this (though I have flashes when I think about how many times I cried out of desperation after being sent away by another doctor). I understand that this disease hides under many curtains and as advanced as my case is, it isn’t a big mystery as to why it was such a big mystery.
I have to make some significant changes. First, I’m crying as I write this and bite into what is probably going to be my last Pinwheel (graham cracker crust, marshmallow, all covered in chocolate) because I have to have zero dairy, gluten, soy or sugar. My aunt claims she has recipes that will take care of any cravings, but I am suspicious. I am already prepared to possibly not interact with the public for a few months in case I turn into a werewolf. Second, I have a crazy anti-microbial, mitochondrial-supportive, gut-supportive, neuro-supportive regimen. Included in that is this vile powder that I am supposed to mix with water two times a day, and I swear it tastes and smells like the chemicals that a hair stylist uses for hair colors.
If I do continue dating, I’ll either have to order like Sally from When Harry Met Sally or I will have to convince dates that there can be no food or beverages involved and they have to get creative.
And now I must change my inner recording to, “I have Lyme. I have Lyme. I have Lyme.
About the Author: Patient Worthy Contributor, Chelsea. Keep an eye out for posts from her as she navigates the gnarly dating world and chronic illness with a sense of humor. Check out her blog, The Sick and The Dating.
