May is Lyme Awareness month.
It seems ironic that we would find a diagnosis and begin treatment now, after so many weeks, months, years of being ill…But it’s also completely appropriate — because if my story can help just one person either through their own journey with Lyme or to bring such awareness that they may show compassion for others fighting this disease, then maybe it’s worth it.
Because education and awareness is where it begins…
It’s how we win.
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Ok, so now that you know how “ticked off” I am, let’s get down to the science of it all…
It starts with a tick. See the period at the end of that last sentence? They can be that small, almost impossible to detect, and yet the damage it causes can be considered, in a word, disastrous to the human body.
Commonly known as deer ticks, these insects thrive in nature, just as they thrive on animals, just as they thrive on us.
First recognized in 1975 in the town of Lyme, Connecticut, this disease has since spread to nearly every continent and is most prevalent in North America and Western Europe. Recent statistics claim it to be an epidemic on par, if not exceeding, that of HIV and AIDS. While it was once believed to remain in a controlled area (namely, New England), the Eastern, Mid-West, and Western United States now show a high-incidence rate, making it one of the fastest-growing infectious diseases in the country. Land development has stirred these ticks from their habitat of primarily wooded areas to more suburban environments, which researchers believe may be a factor for the rapid spreading of the disease.
Here’s the science behind it:
Lyme Disease is spread when a person (or dog, as in the case of canine-Lyme disease) is bitten by a tick that has been infected with a bacteria called Borrelia burgdorferi. Fancy, huh? Borellia burgdorferi is a member of the spirochete family, a corkscrew-shaped bacteria with similar physical components to Syphilis.
When the infected tick feeds on its host (i.e. you), bacteria is transmitted into your bloodstream, eventually making its way into tissue and manifesting into a multi-system disease. These bacteria are smart. Like, really smart. Like, MENSA smart. Remember that corkscrew shape? This shape is what allows them to travel through the body’s tissue and into the central nervous system and, in later stages, the heart, and the brain. And when treatment does begin, they burrow even deeper into the body, often forming cysts in which to hide themselves.
If found early, Lyme Disease can be treated (and presumably cured) with a course of heavy-duty antibiotics. However, what makes this disease so complicated is that its symptoms are often overlooked, the testing is notably inaccurate, and doctors often turn a blind eye due to the disease and its treatment’s controversial and politically-sensitive nature (more on this later).
A clinical diagnosis has become necessary in order to diagnose Lyme Disease, as the classic bulls-eye rash (known as an EM rash) appears on only a percentage of patients and, even then, only within a few weeks of being bitten. What makes a diagnosis even more challenging are the symptoms with which early Lyme is presented: fatigue, chills, fever, headache, swollen lymph nodes…Sounds a lot like Mono, doesn’t it? In fact, that’s what we believed I had contracted initially and had been diagnosed with multiple times over the past ten years…A virus, a cold, a “summertime flu…” With seemingly generic symptoms, it’s easy to see how such a “simple disease” to treat in its early stages can be so readily missed.
But what about the testing? Surely, there’s got to be some kind of bloodwork that can be done to confirm or dismiss a diagnosis of Lyme Disease?
And that’s where the controversy begins to take shape…
Remember when I said that Lyme Disease needed a clinical diagnosis? That’s because diagnosing Lyme is a lot like piecing together a thousand-piece puzzle without the picture on the front of the box to guide you. What you have spread out before you are misshaped puzzle pieces that look a lot like each other, and it takes trial and error, some guesswork, and a lot of patience to put it all together.
And, more often than not, you can’t do it alone.
Lyme is recognized as being a disease that mimics other autoimmune diseases: in its late stages — such as my experience — its symptoms can lead doctors to misdiagnose Lyme patients with the likes of: Lupus, Fibromayalgia, Rheumatoid Arthritis, Multiple Sclerosis, Chronic Fatigue Syndrome, Parkinson’s Disease, and many others. In fact, the symptoms are so similar that some researchers are beginning to investigate the connection between these diseases and Lyme, and many Lyme-Literate doctors are questioning whether these diagnoses are separate diseases at all.
That’s where all the pieces comes together: a doctor knowledgeable in Lyme will take a history and look at the evidence — look at you — and take into account all of the symptoms and testing that either rules out other diseases or definitively points to Lyme.
Testing alone isn’t a definitive conclusion. Especially since the initial testing for Lyme antibodies are often inaccurate, especially in the late or chronic stage of the disease. The CDC even acknowledges the possibility for false-negatives, and many Lyme-advocate organizations, including ILADS (International Lyme and Associated Diseases Society) state that the initial test for Lyme is only 65% accurate.
As of today, there are two blood tests for Lyme: The ELISA test is used by doctors as the first of a two-part screening test for Lyme antibodies. If the test is positive, the Western Blot test — more sensitive than the ELISA test — is ordered to check for specific bands.
Not only are the blood tests themselves highly inaccurate, but the labs in which they’re performed only report certain bands, which are then reported to the doctor and patient as negative or a false-positive. Furthermore, rarely are these patients checked for the co-infections that are often discovered in conjunction with Lyme Disease, which further complicates the disease, its progression, and its eventual treatment. (Sadly, there are only two known labs in the United States whose testing is sensitive enough to accurately check for both Lyme and its co-infections).
Ok, so that doesn’t seem so controversial. What’s the deal?
It’s true that finding a diagnosis can be the most frustrating part for some patients. Personally, I went through my own living hell for at least ten years, visiting doctor after doctor, undergoing test after test, diagnosed with everything from an anxiety disorder and depression to PCOS, gallbladder disease, Fibromayalgia, migraines, Chronic Fatigue Syndrome, Neurally Mediated Hypotension, and more when in fact, every single “diagnosis” was actually a symptom of Lyme Disease and its co-infection of Babesia (a malaria-like infection). Everything. Everything. Yes, including the panic disorder, I was surprised to discover.
But the fight doesn’t end with a diagnosis. In fact, that’s often where it begins.
The outstanding documentary “Under Our Skin” (available for free on Hulu and Netflix — go watch it right now, I’ll wait…) peels back the curtain on the politics surrounding not only the diagnosis of Lyme Disease, but its treatment as well.
Doctors and researchers (and many medical websites) follow the IDSA guidelines that state that a 2-4 week course of antibiotics will cure Lyme Disease, no matter what stage. Because of this, insurance companies often refuse to pay beyond the 30-day prescription, costing patients thousands of dollars out-of-pocket for further — necessary — medical care. However, it has since been discovered that many of the doctors and researchers who wrote these guidelines are working with the insurance companies.
Let me put that another way: the same doctors who claim that it only takes 30 days of antibiotics to completely cure any stage of Lyme Disease (never mind its co-infections) are in the pockets of the insurance company.
One more time: Through their own willful ignorance and arrogance, these so-called doctors are saving insurance companies money instead of saving patients’ lives.
Those who are in late-stage or who have chronic Lyme require months and even years of treatment before they even begin to feel better, never mind becoming “cured.” And those who have the most severe cases of Lyme and its co-infections spend most of this treatment feeling worse due to what’s called a Herxheimer reaction.
Remember how smart these bacteria are? They want to survive at any cost, so they will burrow and hide deeper in the body while the antibiotics seek them out and then, as if saying one last hurrah, as they’re being killed off, these bacteria release toxins that cause a reaction similar to the symptoms of the disease itself with varying (often heightened) intensity — thus the fight song that patients will get worse before they get better, the prayer to hold on because to “Herx,” so to speak, means the antibiotics are working and there’s hope for a future.
Yet because of the treatment guidelines and refusal of many non-Lyme-literate doctors to treat further than the 30 days, patients end up reverting or becoming worse.
Lyme — a disease so needlessly dangerous as it becomes an epidemic– can destroy the body and the mind, leaving its patients crippled by a disease and a system that refuses to save them.
It’s enough to really tick you off.
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Note: A more in-depth look into this controversy regarding Lyme treatment and diagnosis and my own views/experiences will be continued in a follow-up post. In the meantime, please (please) watch the documentary “Under Our Skin” and share it with others so that awareness and compassion for those fighting this horrible disease can grow.
Disclaimer: I’m not a doctor, but rather a newly-diagnosed Lyme patient. The above information is knowledge based on my own research and discussions with other patients and doctors. If you find anything to be factually inaccurate, please don’t hesitate to contact me so that I may amend it immediately. My sole purpose for these chronicles is education, awareness, and my own catharsis.