When I was diagnosed with Lyme disease, I was thrust into a world that was far from the medical world I was used to—the one in which doctors listen to patients and generally have at least a marginal degree of respect for the patient’s symptoms. This new world seemed completely upside-down. Before long, I started to think I was in the twilight zone of some alternate reality.
In those early days, I read and researched and learned as much about Lyme as I could. I contacted friends who had fought this battle, and I met with a Lyme patient advocate. Through my research, I realized what I was up against. Lyme and its treatment are very controversial, and the mainstream medical community will wash its hands of you in a mere 28 days, saying they have done their job. The problem lies in the fact that many cases of Lyme do not respond to the 28-day cycle of antibiotics recommended and approved by the CDC.
Halfway through my 28 days, I knew I still had symptoms of Lyme. I was fairly certain that this relatively short course of antibiotics wouldn’t do the trick to cure my Lyme and whatever coinfections lurked, as yet undiagnosed, in my body. By the time I met with my doctor again, several days after my antibiotics were gone, I still had fatigue, brain-fog, and a host of other symptoms. I remember asking, “What do we do now?”
“We wait,” she responded. “Hopefully, you are fine. If not, you have what’s called post Lyme syndrome.”
I’m sorry, post Lyme syndrome? Are you kidding?
True story: if something doesn’t go away and it’s still present, it’s not post- anything. I immediately started my search for a Lyme literate practitioner. I booked her first available appointment—in five months! Luckily, I was able to get in on a cancellation after only two. At that point, my blood tests were still positive for active Lyme.
If you are struggling with this disease, you are not alone. Together, we will get through this. Through our struggles, we will improve the way Lyme is diagnosed and treated.
[Image is a Lyme awareness bracelet from Bravelets. They will donate $10 from the sale of each bracelet to the cause of your choice.]
3 thoughts on “Lyme Awareness #2”
It does feel like the Twilight Zone for sure!
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I can imagine how perplexing it is. One of my cousins has Lyme and I can still recall the rigmarole and nightmare it was before it was even properly diagnosed. We thought he was going to die. It took going from Canada to Houston and a battery of tests before it was narrowed down and he takes medication every day.
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Lyme is such a challenge because the symptoms can mimic so many other diseases. I hope your cousin is feeling better!