Heather’s Letter ~ Patient Stories Beyond Montana

The following is one of hundreds of letters written so far as part of an awareness campaign, published with the author’s permission.

She has since contributed significantly to spreading of other ongoing Lyme campaigns through social media networking and is soon to embark on the next phase of her lyme journey by beginning care with a Lyme Literate Physician (read more about this in a link to her Fund Me page after her letter).

Excerpts posted here with permission.

Heather’s Letter ~

At the point that I’d had a fever every day for six weeks, I went to the ER for help—not once but twice. They turned me away each time, recommending I see my primary care physician. But I’d already seen him and several other doctors, most of who could do nothing for me even though they noted my fever and other symptoms. I’d already made an appointment with an infectious disease doctor, as someone had recommended, but I had to wait 6 weeks to get in. In the meantime, I kept notes on every symptom I suffered and every doctor I saw. By the time I finally got in with the infectious disease doctor on Sept. 25th of this year, I’d had a fever every day for 12 weeks, among other symptoms.

I’ve been sick for a long time and had high hopes of at least finally getting some antibiotic treatment. I brought my labs, some questions I had and my notes, but when I offered them to the doctor, she said she wasn’t interested, which struck me as odd. I then described my symptoms and what I’d been going through. Eventually, she did look at my labs, moving closer to me and drawing a chart to show how the Lyme spirochete and the IgG and IgM test results work. Only she didn’t use the word “spirochete”—I was the one who did that in order to show her that I knew what she was talking about. She proceeded to tell me that I don’t have Lyme, that my test is negative and that my Rocky Mountain Spotted Fever results are “borderline.” Never mind that the tests are grossly inadequate and that the CDC relies on physicians to make clinical diagnoses. Never mind that I’m positive for band 23, which is not only Lyme specific, but also abnormal. Band 23 is also neurological, as are many of my symptoms.

I asked her about tick-borne co-infections. She sighed and asked to see my notes. I handed them to her and she quickly skimmed over them. I asked if I could please be tested for the co-infections that Dr. Ortel, a Lyme-literate MD, had recommended. She said, “If you’d like to see Dr. Ortel, why don’t you just see her?” I pointed out that Dr. Ortel doesn’t take my insurance—something she would’ve seen had she more carefully read my notes. I then read the tests off to her. She listened with an ugly smile and then started laughing at me. Since I was in pain and was seeking help, her laughter shocked me. She then said that she would not order the tests for me and that she didn’t feel comfortable treating me. I asked why.?? She said, “Because of your pre-conceived notions about Lyme disease. You read too much on the Internet,” and then nodding toward my copy of Dr. Horowitz’s book Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, she added, “and you read literature, too.” I pointed out that Dr. Horowitz is a world-renowned Lyme Literate medical doctor, that his book is a New York Times bestseller and that even if she didn’t respect me personally and what I’m suffering, she could at least give some respect to the colleague who has devoted his entire practice to helping people with tick-borne illnesses. She again flashed her bitter smile and explained that she doesn’t “believe” Lyme can go into cyst form, become dormant, or be transmitted through sexual intercourse or in utero. Believe? These are scientific facts that have been proven in the laboratory and under the microscope. These are scientific facts that have been described in copious peer-reviewed studies. I asked if she’d read any of them? She answered that she had not. If I hadn’t been so sick, I would’ve liked to have taken my turn laughing at her. What kind of infectious disease doctor doesn’t bother staying up-to-date with what the CDC describes as the fastest-growing vector-borne infectious disease in the nation? How arrogant and irresponsible to dismiss the entire body of research!

By that point I was very upset—I was confused, angry, disappointed and in physical pain to boot, and I started crying. She looked at me and said without a trace of emotion, “I see this all the time. People come in here upset and in pain because they think they have Lyme disease when they don’t. You’re not the first to start crying.” I took off my glasses and demanded, “What if you were in severe pain all day every day, fatigued, and suffering with fever, neurological issues, and other symptoms, yet no one would help you? Wouldn’t you cry? Wouldn’t you be upset?” She started saying something, but I cut her off and demanded that she answer the question. “Wouldn’t you be upset?” I again asked. She paused and said yes, but added that she follows the CDC, and doesn’t look at Lyme “the way” Lyme-literate doctors do. She then suggested that I get a Lumbar Puncture and an Echo Cardiogram, which I refused, since she clearly did not have my best interest (i.e., my health) in mind. Before I left, she said that since I was already there she may as well conduct a physical exam.

She had me climb up on the exam table and then took my temperature, barely even putting the thermometer in my ear, she listened to my heart and checked my reflexes. That was it. I couldn’t believe I’d waited six weeks to be “treated” like this. What an awful doctor with a terrible bedside manner!

I left her office and sat in my car crying for another 20 minutes in a full blown panic attack. In 2013, the CDC estimated that 300,000 Americans contract Lyme disease every year, but that doctors are missing the diagnosis and grossly underreporting the number of those of us who are

sick. And what about the Hippocratic Oath all doctors take? If a patient comes in with a fever she’s had for 12 weeks the doctor should be doing all she can to get to the root cause, instead of announcing that she doesn’t “believe” in the science illustrating the spread of Lyme disease and the many forms it can take.

Unfortunately—as illustrated by the CDC’s assertion that doctors are correctly diagnosing and reporting only 10% of the new cases of Lyme disease each year—my experience with this infectious disease doctor is typical of Lyme patients across the country. I’m therefore writing to ask that you please become part of the solution rather than be apart of the problem. Please read the many published peer-reviewed studies about Lyme disease. Please read Dr. Richard Horowitz’s excellent and informative book, as mentioned above. Please take the physician-training program that the International Lyme and Associated Diseases Society (ILADS) offers, which will count toward your continuing education hours. We are currently facing a national health crisis—we are in the throes of an epidemic—yet way too many physicians are not paying attention and are failing to stay current, which destroys the health of the very patients they purport to protect and care for. It’s time that all physicians become educated about the epidemic of Lyme disease and the other tick-borne illnesses that are rapidly spreading across our nation. Please do your part.

With high hopes, Heather Haynes, 35, Female, Cambridge, Md.