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Lyme disease doesn’t make sense. That’s the long and short of it: it doesn’t make sense.

For the last fifty years or so, most physicians are trained in the Western, or traditional, medicine. Western medicine professionals believe in using conventional therapies to cure or prevent sicknesses: lifestyle changes, counseling, physical therapy, surgery, and what has become the most important with the creation of Big Pharma, medication. Physicians trained in Western medicine–which is almost every doctor your insurance company will want you to seek out, if you want to reap insurance benefits–aren’t trained to be scientists. They are trained to be fixers.

It sounds great: when our bodies are broken, we want them to be fixed. And quickly. None of us have time in this world to sit around and let doctors run tests on us, try out medications and therapies and lifestyle changes to see which works best. We want to be FIXED. We want a label for what is wrong with us and a plan for how it will be remedied. We, and our high expectations of our healers, are as much to blame for doctors who hand out pills like candy as are the insurance companies for insisting we go to an MD first before anything else, as are the pharmacy companies for wining and dining physicians into believing their pills are the next big thing. We are responsible for this endlessly churning industry which we have created–we and our demands that our bodies should be perfect and, if they aren’t, there is a fix for that.

Lyme disease, and the multiple co-infections that go along with it, cannot be “fixed.” At least not for everyone. And unlike cancer, which gets a lot of press and publicity because it is defineable and logical and in many cases predictable, victims of Lyme Disease die quietly, often without Lyme even going on their death certificates because, technically, it is not Lyme that killed them but liver failure or acute respiratory failure or suicide. According to a 2017 paper published in peer-reviewed Neuropsychiatric Disease and Treatment, “suicidal thoughts in patients with Lyme and other associated diseases may provide context for the thousands of unexplained suicides in the United States each year” (Ferro). 

The problem is that Lyme disease just doesn’t make sense.

Lyme disease was “discovered” in 1976, when the investigation into mysterious cases of arthritis and juvenile arthritis as well as other inexplicable symptoms throughout several towns in Connecticut culminated in the naming of Lyme as the culprit by the Connecticut State Department of Health and Yale School of Medicine . This study also suggested ticks to be a vector, or method of spreading the disease. Although 1976 was the first date in modern medicine when professionals took notice of the random, inexplicably unconnected symptoms experienced by patients, Lyme has a history in North America: “[c]olonists and visitors to North America in the 17^th and 18^th centuries wrote about the prevalence of ticks in forested areas of the Northeast as well as people suffering Lyme-like symptoms” (https://igenex.com/tick-talk/the-history-of-lyme-disease/). For a long time, it was thought that Lyme Disease was confined to the East Coast and open spaces in the Midwest. But in 2017, the Yale School of Public Health sequenced the DNA of the Lyme disease bacterium, aka Borrelia, and traced its presence in North America at least 60,000 years.

In contrast to the given Lyme Disease rhetoric, Borrelia burgdorferi sensu stricto has been present in North America since long before Europeans arrived on the continent and possibly longer then humans arrived on the continent. “The researchers concluded that the bacterium most likely spread from the northeast U.S. to the south and west to California. This confirms that in the U.S. today, Lyme disease is not limited to New England but is in fact present in all 50 states” (https://igenex.com/tick-talk/the-history-of-lyme-disease/).

One would think that, after all this time, medical professionals would recognize seemingly unconnected symptoms without a clear cause as potential Lyme Disease.

But like I said above, Western medicine schools of thought–so, basically, any accredited medical college in the United States–says if you are experiencing arthritis, you have arthritis. We give you pain killers, maybe sterioids to reduce inflammation, physical therapy to encourage better joint movement and therapy to help you accept the fact that you have arthritis. If you are experiencing depression, you have chronic depression: pills, therapy, maybe a vacation. If you are experiencing constipation, you need to eat more fiber and take over the counter laxatives.

None of these things can possibly be connected. And even if they are, if you actually come in within the crucial two weeks after getting bitten by a tick because you were either aware you were bitten or discovered the bulls-eye rash, antibiotics will certainly kill the little buggers who are trying to set up shop in your weakest organ system, whichever that might be for you. Antibiotics are the nuclear weapons of modern medicine.

The problem is, sometimes people are aware they were bitten by a tick and get antibiotics quickly and are fine. Others are fine for awhile and then start to experience Lyme disease symptoms, even though the antibiotics should have killed all the borellia. Still others have no idea they were every bitten by a tick–the majority of people actually don’t develop the classic bulls eye rash we are told to look out for–and will go throughout their lives actually having Lyme disease but not experiencing any symptoms. And others will be crippled by Borellia creating summer homes along their digestive tract and eventually subletting their nervous system.

Some people will go into remission for their entire lives after effective treatment. Others will spend their entire lives looking for effective treatment, just to feel a momentary relief.

And others will kill themselves because they are so tired of the pain and the fatigue and brain fog and lack of understanding by the medical community and, often, their friends and family.

Lyme disease isn’t cancer, which may not effect everyone along the same timeline, but almost always supports the same symptoms. It’s not Alzheimer’s, which for the most part presents along a very definite timeline, although specific mental capacity may be different for every person. It’s not really anything that can be tested for because, depending on the person, depending on the duration of their illness, depending on where they got the tick bite and what time of year and what kind of tick it was, lab tests for Lyme can be positive, negative, or false positive/negative or all of the above.

Even the CDC, “which recommends that only a specific pattern of antibodies, agreed on by experts in 1994, be considered indicative of a positive test—suggests that, when needed, doctors should use their judgment to make what’s called a “clinical diagnosis,” based on symptoms and likelihood of exposure, along with the lab tests” (O’Rourke).

In Autumn’s case, the medical community’s insistence that Lyme doesn’t “exist” in the part of the country where we lived, added in with a heaping pile of sexism and ageism, prevented them from actually hearing us when I began suggesting her various multiple–and multiplying–symptoms were Lyme.

“Do you hike alot?” one doctor asked me.

“Not a lot, but we’ve been hiking–“

“Have you ever noticed a bulls eye rash on her?”

“No, but I could have missed it. She might have seen it and not told me. She’s never liked coming to the doctor. She would totally hide that from me.”

“If you never saw the rash, then she can’t have Lyme.”

“Is it possible that she had the rash and we missed it? Is it possible she’s weirdo and just never got the rash?”

“No. You’re not making being logical.” That doctor, as many who followed would be, was adamant that without the rash, there was no Lyme. “Diseases have rules,” they said. “Lyme doesn’t make sense for what is going on with your daughter.”

In actuality, as we were to find out, it is Lyme disease itself that doesn’t make sense.

Maybe someday, Autumn’s story will make it’s way back to those doctors who told us a Lyme diagnosis wasn’t logical, and they’ll realize it was they that were full of nonsense.

References

Ferro, John. “Suicide: Lyme Disease’s Less Understood Outcome, a New Study Says.” Poughkeepsie Journal, Poughkeepsie Journal, 7 Aug. 2017, http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2017/07/19/lyme-disease-suicide-bransfield-study/483959001/.

Jackson , Aaron J. “When Doctors Don’t Listen.” SAPIENS, Michelle Jones/SAPIENS, 13 June 2018, http://www.sapiens.org/biology/chronic-lyme-disease-treatment/.

O’Rourke, Meghan. “Lyme Disease Is Baffling, Even to Experts.” The Atlantic, Atlantic Media Company, 6 Nov. 2019, http://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/.

Schwartz AM, Hinckley AF, Mead PS, Hook SA, Kugeler KJ. Surveillance for Lyme Disease — United States, 2008–2015. MMWR Surveill Summ 2017;66(No. SS-22):1–12. DOI: http://dx.doi.org/10.15585/mmwr.ss6622a1external icon.

“The History of Lyme Disease.” IGeneX, 15 Apr. 2020, igenex.com/tick-talk/the-history-of-lyme-disease/.