Explore the journey of a Lyme warrior reflecting on progress, setbacks, and strides in Lyme disease awareness.
For many years when I was battling acute Lyme and other tick-borne diseases, I felt like I wasn’t making any progress. Bedridden and on intravenous antibiotics, I’d make a few gains—say, being able to walk to the mailbox, or drive myself to the pharmacy—and then have a Herxheimer reaction that would cause my symptoms to flare. Often, I felt like I was taking two steps forward and one step back; sometimes, it felt more like one step forward and two steps back.
With proper treatment, adjunct therapies, and accommodations to make tick-borne illness fit into but not define my life, I eventually spiraled forward to sustainable remission. Even with small setbacks along the way, my non-linear path has ultimately led to a healthy, happy life. But it’s been a long journey (see my blog post “Gratitude for the Long Game”).
If someone had told me, when I was acutely ill with Lyme disease, babesiosis, ehrlichiosis, and chronic active Epstein-Barr virus, that I would one day live independently, work several jobs, publish, exercise, and have a fulfilling social life, I would have laughed. But looking back now at the big picture, I can see that many little gains along the way led to the foundation of wellness I enjoy today.
I can chart similar slow steady progress, with some setbacks, in Lyme disease awareness. When I got a tick bite in 1997, Lyme disease was not on my radar, even though I grew up in the state where it was discovered. It was not on the radar of the nurse at the summer camp where I was working, even though we were in the woods of Maine. It was not on the radar of the many health care professionals I saw in the months and years that followed, even though I had classic Lyme disease symptoms. It took eight years for me to be accurately diagnosed.
I believe that if I were to present today with the symptoms I did in 1997—a blotchy red rash on my arm, sudden hypoglycemia, flu-like symptoms—Lyme disease would be considered. It might even be clinically diagnosed—as it’s supposed to be, per the CDC, based on my symptoms and risk factors for a tick bite—without need for a test. Had I been tested immediately for Lyme, the result likely would have been negative, because my body would not have had time to build up antibodies. But these days, some doctors would either ignore that false negative test or just make a clinical diagnosis, and I would be treated on time with antibiotics.
I say some doctors because there are still too many that don’t understand the new CDC guidelines and rely too heavily on faulty tests. Here we have one of the small steps I mentioned: Lyme literacy has improved to the extent that there is more awareness and diagnosis of it, but we still have strides to make in physician training. The good news is that public awareness of Lyme is up; more people know to ask about Lyme disease when they have a known or suspected tick bite or symptoms of Lyme. To me, Lyme disease awareness month means making efforts to get Lyme, and its diagnostic protocols, on even more people’s radars, especially physicians’.
Though hypoglycemia is a symptom of babesiosis, I can’t say with confidence that if I presented with it today, many doctors today would test for that or other co-infections. But they might, which is a small step forward. In 1997, it wouldn’t have even been considered.
Some awareness of other tick-borne disease is growing, thanks to newspaper articles, magazine essays, blog posts, and websites that share this information. But more is needed. Just yesterday, a neighbor with Lyme disease was telling me about his pouring nightsweats. When I said that’s a symptom of babesiosis, he looked at me like I had two heads. To me, Lyme disease awareness month means being grateful that co-infections are getting press, but still working to improve literacy about them. It starts one person at a time, in a conversation like the one I had with my neighbor, who is now going to talk to his doctor about co-infections.
Lyme disease awareness month is a call to action, but I also see it as a time to celebrate the strides that have been made. Since the time I was diagnosed, new treatments have been explored. The intravenous antibiotic I was on is hardly even used anymore. Researchers, many funded by GLA, are studying options from Hygromycin A to essential oils. Lyme disease research and treatment centers have popped up at major universities like Columbia and Johns Hopkins. Spaulding Rehabilitation Hospital in Boston had the Dean Center focused on Lyme disease recovery. I look at work by the U.S. Department of Health and Human Service’s Tick-Borne Disease Working Group and I am floored by the money that’s been raised, the laws that have been written, and the recommendations that have been made to Congress. I think about my battle for insurance coverage for my treatment and now look at the laws in my own state and others that mandate it (and yet, we still need these laws in other states; two steps forward, one step back, ever moving toward the end goal).
Perhaps the most exciting shift, for me personally, is in acceptance of and language for chronic Lyme disease. No, the CDC has not come out and used the word chronic, but they have changed their language significantly to recognize that many people suffer long-term, persistent symptoms of Lyme. Long COVID has brought awareness to other long-haul illnesses like Lyme and the many different factors—including but not limited to ongoing infection—that may cause them. (For more on this shift, see my blog post “Chronic Lyme is Getting More Validation”.)
While there is still work to be done, there is much to be celebrated during this Lyme disease awareness month. Stay tuned for most posts on specific strides, as well as ways to help spread awareness!
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