Diagnosing Chronic Lyme Disease


The last day I felt healthy was December 23, 2011. That afternoon, I developed flu-like symptoms which morphed into a wide range of health issues during the ensuing months that included status migraines, cardiac arrhythmias, joint pain, vertigo, nerve tingling, hair loss, insomnia, cuts and burns that were slow to heal, anxiety, problems focusing my attention, and a level of mental fogginess usually associated with people twice my age. These symptoms appeared and disappeared with no discernible regularity or triggers. I never knew which medical issues were going to greet me each day, and I went to bed some nights fearful that I wouldn’t live to see morning.

tickwarning3I consulted with over a dozen specialists who were top experts in their fields. These doctors ordered blood tests, MRIs, CT Scans, EKGs, a spinal tap and even a transesophageal echocardiogram to get a close-up look at my heart. My spinal fluid and blood were tested specifically for Lyme disease. All tests came back negative.

As I neared the two-year mark of feeling unwell, I started to wonder if I was losing my mind. I felt sick all of the time, I was experiencing a symphony of seemingly-unrelated symptoms, and none of the doctors I was seeing could offer me any answers. At a friend’s suggestion, I consulted a mind/body therapist, Dr. Suzanne Nixon, from the Northern Virginia Integrative Therapy Center. After one session when I outlined my medical history, she said bluntly, “Chris, I think you have Lyme disease.” I told her it wasn’t possible since my Lyme tests were negative. “Which lab processed your test?” she asked. Thus began my education in the controversy surrounding the testing, diagnosis and treatment of chronic Lyme disease.

I quickly learned that there are two “camps” in the world of Lyme disease physicians. The first group of doctors – the ones that I had been seeing – follows the Infectious Diseases Society of America (IDSA) guidelines. They believe that Lyme disease is curable with a short course of antibiotics. The second camp of physicians follows the International Lyme and Associated Diseases (ILADS) standards. These physicians identify themselves as “Lyme Literate Medical Doctors” (LLMDs) and believe that Lyme disease can linger on, undetected, in some patients for months and years. LLMDs often have practices full of patients suffering from chronic Lyme disease. Many LLMDs see so many chronic Lyme disease sufferers that they can no longer accept new patients.

Even Lyme disease testing is fraught with controversy. Most IDSA doctors order Western Blot Lyme blood tests that are processed by commercial labs which follow The Center for Disease Control and Prevention (CDC) testing guidelines. Most LLMDs order Western Blot tests from independent labs, such as IGeneX, because these tests are more sensitive to detecting Lyme-specific bands.
At Dr. Nixon’s suggestion, I had my blood tested by IGeneX. The results came back positive for Lyme disease. I thought I finally had a reliable diagnosis. But when I mentioned this to an IDSA-following physician friend, her response was, “I’ve never seen a negative IGeneX Lyme test. All of their tests come back positive.” I found myself in a strange and unfamiliar world. Here were pedigreed doctors disagreeing with other pedigreed doctors. So who should I trust? To make matters worse, there is a very active (and pernicious) underground online community of people who are exploiting the sick and desperate with offers of “miracle Lyme cures.”
I reached a point where I had to accept a Lyme disease diagnosis even without a positive CDC test. This was difficult for me because I never had a tick on my body for more than a few hours, I never pulled off an engorged tick, and I never had a bull’s-eye rash. But now I know that you can also contract Lyme disease via mosquito bites, dog saliva and from blood transfusions. Preliminary research also suggests the disease can be passed from mothers to babies in utero and it may be sexually-transmitted. When the CDC restated their estimate last year for the number of Lyme disease sufferers in the US, they increased their count by ten times their previous calculations. Lyme disease is widely believed to be the fastest growing disease in the world.

I decided to put my care in the hands of LLMD physician Dave Stewart, MD of Loudoun Holistic Health Partners. I also found a general practitioner, Martha Calihan, MD, who is well-versed in traditional and holistic medicine. My treatment plan involves taking daily doses of specific herbal tinctures, vitamins, minerals, probiotics and homeopathic detox agents. I have also made major lifestyle changes such as getting eight hours of sleep every night and practicing mindfulness. I modified my diet by cutting out inflammatory agents such as gluten, alcohol, caffeine and sugar.

In the eight weeks since I began treatment many of my symptoms have steadily improved and some have disappeared altogether. I am not out of the woods yet, but I am optimistic that I will make a full recovery.

tickwarning6Photography: Chris Croll

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