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The Boston Globe

HealthScience

One patient’s perspective

Recently, I interviewed a local Boston doctor to see if he might be a good primary care physician for me. My requirements were fairly straightforward, ones that anyone would seek: a compassionate bedside manner, solid commitment to the patient’s long-term health, and admitting privileges at a top hospital.

The doctor met all of these criteria, but in the end, we were not a match. Why?

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Because I was also looking for someone who could get behind my long-term treatment for chronic tick-borne diseases, someone who would be willing to work together with my Lyme disease specialist. This doctor told me he treats Lyme only by the book, and could therefore only meet me so far in his support. He follows the guidelines set by the Infectious Diseases Society of America and the Centers for Disease Control and Prevention, which state that most cases of Lyme disease can be treated with just a few weeks’ of antibiotics.

That, for me, was a deal-breaker.

As I outlined in an article I wrote for Boston.com last year, I was bitten by a tick in 1997 but was not diagnosed with Lyme and two of its co-infections until 2005.

By that time, the bacteria had spread to every system of my body and crossed the blood-brain barrier, damaging my central nervous system. Because the infection was so severe, long-term antibiotics were the only course of treatment that would work. Adjunct remedies like physical therapy, bioneurofeedback, nutritional supplements and dietary restrictions helped me on my path to wellness, but without long-term antibiotics, I never would have gotten better.

Three weeks of antibiotics would have only made a small dent against the infection that was waging war against my whole body. Cutting Lyme treatment short is like radiating a small portion of a tumor and leaving the rest to metastasize. No doctor would allow that for a cancer patient; why should it be acceptable for another illness that has been proven to self-replicate and spread?

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One concern some doctors have is that long-term antibiotic treatment might do more harm than good. Letting an infection continue to spread untreated is arguably more damaging than any medication. Cancer patients are willing to lose their hair or suffer other adverse effects of chemotherapy because the alternative is far worse. The mentality is no different for patients with chronic Lyme, but luckily, antibiotics tend not to have such severe contra-indications. I personally did suffer from one of the more rare side effects, gallstones. Doctors are becoming more and more aware of that problem and are either using antibiotics that are not known to cause gallstones or are checking regularly for gallbladder trouble. A good Lyme literate physician will routinely run labs to make sure that vital organs are not being affected by antibiotic use. During my most intense periods of treatment, I had blood work done once a week.

Another concern is that long-term antibiotic use creates resistance, such that antibiotics won’t adequately attack other infections in the body. A good Lyme literate doctor is aware of this possibility and works to prescribe against it; he/she might change up antibiotics, or stick to certain families not used for more common infections. If teenagers can take years’ worth of antibiotics to combat acne, why shouldn’t the same be true for patients with a serious illness?

In the time that I have been on long-term antibiotic treatment, I have had two sinus infections and one ear infection. These infections responded to and were cleared up by short courses of antibiotics that were different from the ones I ordinarily take.

The doctor I interviewed admitted that I am living proof that long-term antibiotics work in the treatment of chronic Lyme disease. However, until he sees cases like mine published in a study—until he sees guidelines changed to meet growing patient evidence—he is not willing to step outside the box in his own treatment.

In many ways, I don’t blame him. Lyme is a politically polarized disease, and I understand that a doctor with no vested interest in tick-borne illnesses might want to avoid this quagmire altogether.

With tick populations on the rise, however, the Lyme disease predicament won’t soon go away. And the more cases that go undiagnosed and untreated, as mine did, the more patients are going to be turning up in doctors’ offices—maybe in the office of the doctor with whom I spoke—looking for answers.

So what is the answer? My experience tells me that the best defenses against chronic tick-borne diseases are prevention and early detection. The more people become comfortable with identification and removal of ticks, and signs of infection, the less chance they will have for that infection to be missed. Many cases of Lyme are misdiagnosed or undiagnosed because tests are unreliable. Moreover, not enough doctors know of early signs and symptoms to watch for.

Most Lyme disease cases that are caught right away can be treated with a few weeks’ worth of antibiotics. Patients who remain sick are not often ones who were treated immediately; they are patients who were never treated at all. They are patients like me, whose infections ran rampant for too long before accurate diagnosis and treatment. If more cases were detected early, the issue of chronic Lyme might not be an issue at all. Conversations like the one I had with the doctor in Boston would be moot. If I had been treated with a standard course of antibiotics back in 1997, I wouldn’t have chronic Lyme. I wouldn’t be fighting this fight. But I’m here, telling my story, in the hopes that it will become the exception and not the rule. And that’s something I think people on any side of the Lyme debate can get behind.

Jennifer Crystal is working toward her MFA in Creative Writing at Emerson College. She is writing a memoir about her experience with tick-borne diseases. Her website is www.jennifercrystal.com.

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