My Time With Lyme... So Far

What I do know with certainty is how little is known about Lyme. Tests are inadequate. Treatments are not well-defined. I've had four Lyme tests (so far). Two have come back positive and two have come back negative.
09/20/2013 10:49 pm ET Updated Nov 20, 2013

The recent news from the CDC that Lyme disease is 10 times more common than originally thought did not take me by surprise given my current bout with the illness. I am the quintessential city girl, born and raised in Philadelphia and having lived most of my adult life in Washington, D.C. I have never been camping, never developed a knack for gardening, and the farthest I ever hike is to my closest Starbucks for my daily cup (or three) of joe.

So, I was pretty surprised when I looked down one afternoon and noticed a round, red rash on my thigh. I had just heard a story on NPR about Lyme disease and consulted Dr. Google about whether the rash could be Lyme. Although it wasn't the classic bullseye rash usually associated with Lyme, it matched enough photos on Google Images to raise some red flags. I was away from home at the time, but called a doctor who phoned in a Lyme test without much concern and without so much as asking for a photo of the rash. That test came back negative, and I didn't give the rash another thought for a while.

Over the next three weeks, I developed some weakness in my arm and leg and became more and more tired -- all the time. I have three young kids and am used to feeling worn out, but this was a level of exhaustion I had never experienced, even in the newborn days. This time, back home, I saw my doctor. I mentioned the rash and the my doctor ran a battery of tests, including repeating the Lyme test. Suspecting a vitamin deficiency as the most likely culprit, I was taken aback when the doctor called to tell me I did in fact have Lyme disease.

I breathed a sigh of relief when I heard the news. The reason I had not been feeling well had been identified and, I was told, was easily curable with three weeks of antibiotics since I caught it early. No problem, I thought. I made a trip to the pharmacy and waited for the antibiotics to work their magic. After two days I felt great. I had more energy than I had remembered having in a long time. I spent a fabulous weekend running around and playing with my kids.

Then, I started to feel tired again. No big deal, I thought. I'm still at the beginning of my treatment and the antibiotics just need a little more time to kick in. But, I continued to get sicker. The fatigue grew worse than ever, I felt as though I had the flu, and I developed a low-grade fever that would come and go throughout the day. My doctor told me to hang in there, to give the antibiotics more time.

Feeling as though I was getting weaker every day with no end in sight, and having difficulty caring for my young children, I sought out a specialist. I asked for recommendations on my neighborhood listserve for doctors experienced in treating Lyme. I received several recommendations, but few or the recommended doctors accepted insurance of any kind. Of those that did, two were no longer accepting Lyme patients and one told me he wouldn't do anything more than was already being done. The other recommendations ranged from a nurse who charged $300 for an initial consultation to a doctor who charged $800 for the first visit alone. Wondering if I would have to choose between suffering without adequate medical care or getting a second mortgage on my house to pay to be well, I looked up infectious disease specialists on Google and hoped for the best.

Fortunately, my Google search led me to a doctor I like and trust. Based on the description of the non-typical bullseye rash and my low-positive on the Western Blot Lyme test, the infectious disease specialist suspected the Lyme test was a false positive. She ran numerous tests for viruses, other tick-borne illness, and re-ran the Lyme test. When my blood work came back with a higher (although still low) Lyme antibody titer, she extended my antibiotic regimen, ordered an even more specific Lyme test (C6), referred me to a rheumatologist for follow up, and sent me to a numerologist who could hopefully get to the bottom of my visual disturbances, tingling, and weakness. More negative tests including another negative Lyme test, MRIs, a spinal tap, and numerous neurological tests later the jury is still out on the best course of treatment.

I have days where I feel a little better. I may still be at the beginning of my journey with Lyme, or I may be nearing the end. I may be heading for IV antibiotics or I may be told there is nothing more that can be done. What I do know with certainty is how little is known about Lyme. Tests are inadequate. Treatments are not well-defined. I've had four Lyme tests (so far). Two have come back positive and two have come back negative. I have neurological symptoms consistent with Lyme, but no detectable presence of Lyme in my central nervous system through a spinal tap or MRI. I've completed the four weeks of antibiotics I was told would make me better yet am still getting daily fevers and battling fatigue so severe taking a shower has become a major activity for me. I've come up against the line where medicine morphs from a science into an art and am waiting in limbo for treatment that will make well.

Hours of time recovering in bed were spent with Dr. Google exploring appropriate treatment. There seems to be little consensus on treatment and much risk to patients. There also seems to be no shortage of doctors ready to see only those who can pay exorbitant rates to see them as well as all manner of snake charmers claiming to those desperate for treatment that everything from ground earthworms to metal amulets can cure them of Lyme. While I do not doubt that some homeopathic remedies can be helpful in curing Lyme, there seems to be an unpleasant decision facing those who would like to use these remedies between paying hundreds of dollars a month to get a doctor's advice or trolling the internet hoping to find something real and helpful in the overwhelming number of anecdotal stories and charlatans selling miracle cures to those who have no where else to turn.

While I rest in bed now recovering from a headache resulting from a spinal tap performed five days ago with a tingling leg, I can only hope that I am coming to the end of my time with Lyme. However, given the uncertainty surrounding diagnosis and treatment I know fully well that I may be at the beginning, that more treatments and tests may be in my future, and that I may not feel fully like myself for months or even years.

Looking back on my experience so far, I cannot help but wonder what would have happened if the doctor would have prescribed antibiotics when I first noticed a rash instead of waiting for a positive Lyme test. Those three weeks without treatment may have made all the difference between truly stopping the disease in its tracks early and allowing the notorious Lyme bugs to continue to multiply, leaving me barely able to get out of bed for weeks, missing the last weeks of summer fun with my kids. Although I am not a doctor, if I ever saw any tell-tale signs of Lyme is someone I love, or even a stranger on the street, I would urge them to insist on starting antibiotic treatment right away.

Since my diagnosis, and the news that Lyme is 10 times more common than thought, I have been hearing more and more Lyme stories. My neighbor had Lyme two years ago. Two friends who live around the corner struggled with the disease last year. A cousin who lives in New York City was diagnosed just last week. Although it may come too late for me, it is abundantly clear that more research needs to be done -- soon -- on this disease that affects over a quarter million Americans alone each year. That is a lot of people who, like me, are likely starting many of their sentences with "when I feel better" not knowing when that time will come.

To my fellow Lymies, I say stay strong. Focus on the stories of those who have gotten better. Exercise caution when reading untested advice on the internet and be wary of parting with your money for false promises of a cure no matter desperate you may become. Nourish your body with nutrient-rich food and rest, rest, rest. To everyone else, remain vigilant. If this healthy, active city girl can be struck down by a tick the size of a poppy seed, it can happen to anyone. Check for ticks and rashes and insist on antibiotics immediately if you think you have been infected. And, because so many of those with Lyme Disease never see a tick or a rash, ask for a Lyme test if you feel unwell and there is no other explanation.

If you think you can't get Lyme you're wrong -- we're all in this together and we need to insist on better diagnostic tests and better treatments.