Whenever I tell someone “I have Lyme,” I get reactions varying from “Oh that shouldn’t be a big deal,” to “Oh, yeah I heard that can get bad.” I even get incredulous looks from others my age, in their mid-to-late 20s, as if I wanted this perpetual “sick-day”.
For those who don’t believe it, or those who are just inquisitive, I always offer up these few facts about Lyme that I am confident the community at large isn’t aware of.
Fewer than 50% of Lyme patients even recall a tick bite or even the tell-tale bulls-eye rash.
The current standard, 2-tier serologic testing is so low sensitivity (29%-40%) for early infection, that it negates the notion that early detection and quick treatment is so commonplace
The CDC addresses this in their FAQs, essentially saying “Well you just have to wait 4 to 6 weeks to get tested, then the test will probably work.” Well, if half of us don’t realize we’ve been bitten, doubtful we will hit that exact 4 to 6 week mark. And chances are, if I have been bitten by a tick and feel funky, why would I want to wait 4 to 6 weeks for a test? The test is so bad, some states have laws enacted that require physicians to tell their patients that just because their test came back negative, doesn’t mean they don’t have it.
There are multiple possible co-infections that can come along with Lyme Disease, including Babesia, Anaplasma, Ehrlichia and Bartonella.
If these go left untreated, often with medicines that are different than those that treat Lyme, it can prevent healing and full recovery.
There has been much debate in the medical community over the existence of chronic Lyme and how to treat it. In fact, some organizations will refuse to even call it “chronic Lyme”.
However, Johns Hopkins recently opened a research center dedicated to exploring the complexities of what they do call “chronic Lyme disease” so that physicians may have better guidelines to treat patients who continue showing symptoms, even after the standard CDC antibiotic therapy.
Lyme Disease can affect the central nervous system and mimic symptoms of other neurological diseases.
Because of this, Lyme has been misdiagnosed for illnesses like “ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s, and autism.”