Lyme disease is trending on here because Justin Bieber has it and scrolling through the top tweets about it got me upset so I just wanted to say a few things about Lyme. So here’s a thread.
I was diagnosed with Lyme a little over a year ago. I had been having trouble hearing, focusing, arthritis in my knee and overall low energy and bad memory.
I had to go to several different doctors and have several different tests to rule out all these other possible ailments (they suspected everything from ADHD to early onset dementia).
Finally they tested me for Lyme and the doctor told me he hadn’t ever seen such high antibody numbers in his whole time working in the DMV. He told me I probably had it for years.
I did two rounds of antibiotics over six months. Between the Herx reactions (which basically felt like a flu for 24 hours every 3 weeks or so) and the antibiotics wreaking havoc on my digestive system, I slowly started to feel better.
I definitely wouldn’t have been able to afford all of this if I didn’t have good health insurance through my job. It also helped to be able to take a two week health leave of absence from work plus call out sick relatively often. I know not everyone has these luxuries.
Some of the reactions on Twitter to Bieber’s diagnosis are really annoying, particularly ones saying “I had Lyme disease once and it was fine.”
Lyme disease, when you get it treated early, like right after getting bit by a tick, is way easier to treat than Lyme that has sat undiagnosed in one’s body for years, especially after it crosses the blood brain barrier.
Also, having an illness that was not immediately visible or understandable to people really had an effect on my social interactions. I would zone out when people were talking, constantly forget people’s names, yawn and look super sleepy at inappropriate times.
Also it meant I was constantly bailing on social outings, not participating in work social outings, etc.
I think people just thought I was aloof or constantly stoned or bored or rude or didn’t care enough to remember certain important details about them.
It also made me more sensitive to the intense mixture of Protestant work ethics and neoliberalism that infuses this country, where your worth is determined by how busy/productive you are. I usually had to come home from work and just hit the couch!
Now I feel quite a bit better, and feel like I probably have been cured but it is tough to be sure because there is not a scientific consensus on just how treatable longterm Lyme is, and my brain and body are feeling better but still not as good as they were before I got sick.
But I just try to live my life with an understanding that I have certain limits on my body time and energy and also try to push those limits when appropriate.
Also tapping into the whole “Lyme wars” over treatment, whether or not it is chronic, conspiracies about how the disease started, etc., was really disorienting and depressing.
I guess all I am trying to say here is that people should know that Lyme is no joke and both because of the controversy within the medical establishment about it and a totally inequitable health care system I think way more people have it than have been diagnosed or treated.
I should add that I also treated my Lyme with herbal medicine, dietary changes, supplements, yoga and exercise as well, plus did a lot of journaling on it, all of which felt like it helped too.
And that a combination of antibiotics plus complementary medicine was what worked for me, and these two approaches don’t need to be an either/or, they can be a both/and.
Also last year I wrote a piece about Lyme disease in the DC region along with @JulieDepenbrock, with tips for prevention. Check it out. wamu.org/story/19/07/03…
And produced a @kojoshow about Lyme too thekojonnamdishow.org/shows/2019-07-…
