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The Tick That Took Me Out

My story of getting and coping with late-stage Lyme disease—one of the fastest spreading, most debilitating, and least understood diseases in the nation.

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Lyme can affect the gut, causing irritable bowel symptoms and nausea. Hormones get thrown off balance. Almost everyone experiences sleep disturbances. Many people have heart palpitations, pain, or increased heart rate.

LLMDs agree that each person’s symptoms can be different, especially considering co-infections, and for treatment to be effective, it must be tailored to the patient. Dr. Bill Rawls, a physician who himself struggled with Lyme for 10 years, writes extensively about this on his blog at www.RawlsMD.com, as do www.LymeDisease.org and Stephen Harrod Buhner, who offers herbal protocols for each co-infection. I take his herbs for babesia as well as borrelia.



According to the Centers for Disease Control, whose estimates are considered conservative, 427,000 Americans contracted Lyme disease in 2017. This number is calculated by multiplying the number of reported cases by a factor of 10, because the CDC understands that Lyme is under diagnosed and therefore underreported. Even taking this into consideration, more Lyme cases were reported last year than any other year in history. The number is likely increasing due to climate change (ticks live longer in warmer weather).

There were more Lyme cases in 2017 than the number of new breast cancer patients and AIDS infections combined, according to Bay Area Lyme Foundation. But despite these alarming statistics, very little money is being spent on research. For example, Bay Area Lyme Foundation reports $57,960 is spent on research annually per AIDS patient, compared to $133 per Lyme patient.

One of the main reasons Lyme is so underreported is that you must meet narrow guidelines in order to receive a CDC-approved diagnosis. You must first test positive for antibodies through a test called EIA, or enzyme immunoassay. This is the test Kaiser gave me, which came out negative. If you test positive, you will be given a second test, called the Western Blot. The Western Blot measures antibody levels with more detail than the EIA. According to CDC rules, after testing positive to both these tests, you can be treated with a two-to-three-week course of oral antibiotics. This treatment, proven effective for Lyme in its early stages, is covered by insurance.

But according to Bay Area Lyme Foundation, this method of testing misses 60 percent of cases of Lyme. Dr. Darin Ingels, an LLMD, Lyme survivor, and author of The Lyme Solution, writes that these testing standards were established in the mid-1990s prior to our more nuanced understanding of Lyme today. In his book, Ingels discusses science’s more recent discoveries: There are more than 100 species of borrelia in the United States. But the CDC test only looks for borrelia burgdorferi. Ingels also writes that the EIA test is just not particularly sensitive. The Western Blot is much more so, but not offered unless your EIA results are positive. Even so, Ingels writes that his patients have had varied responses to the Western Blot test, even the same patient over the course of treatment. Their response depends on the state of their immune system. This is another reason the tests fail to detect Lyme—someone with a compromised immune system will not mount a robust immune response to invading bacteria.

To complicate all this, sometimes, according to many LLMDs, including my own doctor, even if you do test positive and receive treatment, the short course of oral antibiotics may not work. The CDC agrees that borrelia is treated with most success early in an infection. Antibiotic treatment will also fail to eliminate parasitic co-infections.

What happens if borrelia is not detectable in standard tests, or if antibiotic treatment fails, and a patient develops chronic symptoms? According to its website, the CDC debates whether late-stage Lyme disease is actually Lyme disease at all. With the approved tests, evidence for a borrelia infection can be impossible to find in patients complaining of long-term symptoms. Regardless, the CDC doesn’t approve long-term antibiotic treatment, citing studies that failed to prove adequate results, as well as concerns about side effects.

Effective testing and most treatments for chronic Lyme are not covered by most insurance policies. According to Dr. Darin Ingels and other LLMDs, the lab IGeneX offers a much more reliable (but not infallible) and much more expensive test for Lyme. IGeneX also just came out with a revised Western Blot test, more sensitive than the original. But to get these tests, you must visit a private LLMD specialist.

LLMDs also offer clinical diagnoses, which Dr. Darin Ingels and Dr. Richard Horowitz agree is the best way to diagnose Lyme disease, because of the multiple microbes possible in any infection. This means ruling out other possible diagnoses and checking a long list of symptoms that indicate a Lyme infection. If you answer in the affirmative to enough of the questions, a Lyme diagnosis can be assumed regardless of lab tests.

Dr. Richard Horowitz, one of the best-known LLMDs in the nation, has published his own questionnaire and considers it more effective than any lab test on the market. You can find the questionnaire in his book, Why Can’t I Get Better, or online.

Standard treatment options for Lyme in an LLMD’s office include weekly, long-term IV antibiotic treatments, anti-parasitic treatments, detoxification treatments, blood ozone treatments, IV nutritional support, supplements, and herbs.

These treatments can be helpful and may lead to remission. But none is short term, and none is cheap. The typical LLMD charges $500 to $900 an hour for a doctor’s visit. Testing for Lyme and co-infections usually costs about $500 to $700 per test. One IV antibiotic treatment is usually over $100. Supplement bottles typically cost about $50 each; some are much more. Most chronic Lyme patients will need to take about 20 different supplements daily, ongoing, and will require medical treatment for years. How many of us can afford this?

People with chronic Lyme have high rates of suicide. When the disease is active, life can feel like it’s not worth living. The reason to keep fighting is the hope of eventual improvement and possibly remission. But if someone can’t afford treatment, this hope can wane.



With the number of infected Americans so high and rising, why is the Center for Disease Control so slow to mandate covered treatment for chronic Lyme disease? Why are we spending so little money on research to find treatments that work, and a cure? Why are most doctors still so misinformed about Lyme disease? Some answers lie in the difficulty and expense of treatment, while others are elusive.

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