There is a phrase that the Lyme community uses that has upset the rest of the medical world: “Lyme-literate doctor.” This phrase has been developed and used to specifically to highlight those who are highly educated and experienced in diagnosing and treating Lyme and tick-borne diseases. They are heavily networked with other Lyme-literate providers and consult with on difficult cases.
When this phrase has been spoken in a primary care physician’s office, the conversation can take a sudden downward turn. Most doctors that I’ve spoken with who are not considered Lyme-literate take great offense to this phrase because they feel that it implies that they are “illiterate.” The Lyme community uses this as a basis when seeking out a provider who has vast knowledge about the fastest-growing multisystemic, complex, infectious disease.
I personally have no qualms whatsoever about using the phrase. I think it pays honor and respect to those providers who saved my life. I went through 23 doctors and specialists who could not figure out what was medically wrong with me and who misdiagnosed me many times over. And I continued to grow sicker with every passing day. Lyme-literate providers, knowing that they live or practice in an endemic region, take it upon themselves to study and learn on a continuing basis about new strains, new diagnostic tools, and up-to-date treatment protocols.
Researchers from Yale and Johns Hopkins are consistently discovering new strains that existing protocols do not respond to. They are constantly running trials to find new treatments that combat, slow down, and potentially eradicate the bacteria.
Lyme disease and anaplasmosis are not the only concerns Maine residents need to be concerned with. We have babesia residing here and that is a malaria-based tick-borne disease that does not respond to the typical Lyme disease treatment of doxycycline. The treatment protocol for babesia is so completely different from Lyme and anaplasmosis, even though early in its infection state it can mimic Lyme.
So many tick-borne diseases start off mimicking Lyme, so when a patient present to the primary care physician saying they were bitten by a tick and the doctor runs a Lyme test, often it comes back negative. The CDC has gone on record to state that the existing ELISA test many doctors run in their offices is at best 40 percent accurate. So, with a negative test, the patient goes home, and if infected, it slowly spreads.
So why is it important who you seek out when you think that you’ve been exposed to a tick-borne disease? Because you want a medical expert who has knowledge and experience in diagnosing and treating whatever disease you have. Otherwise, you are left with a provider who makes the best educational guess based on limited knowledge and experience or one who insists on following outdated guidelines and antiquated protocols.
What is frustrating for patients is that, here in 2018, medical providers are still so divided on this matter that it has greatly influenced whether insurances will cover doctor visits and much-needed treatment protocols. In 2013, the CDC acknowledged that there are flaws with testing and even treating. They have started participating at national Lyme conferences, sharing what they know and helping to pave the way to collaborative efforts — all in the name of patient care.
Sadly, it’s the medical community that continues to adhere to the outdated guidelines and turns a blind eye to anything else, and it is their patients who suffer because of it, because those patients see providers who are not aware or who refuse to acknowledge the faultiness of the tests, who are not knowledgeable about the complexity of tick-borne disease, and therefore do not recognize how it manifests in a patient’s body at chronic levels. These are the same doctors who continue to throw 14 days of antibiotics at bacteria that has a 30-day life cycle, the very same who dispute chronic Lyme even exists.
Last week, at the Union Fair, I spoke with hundreds of Mainers and visitors who shared their personal experiences of how their primary care or ER provider handled their concerns of exposure to tick-borne disease. For a doctor to tell a patient that without a bull’s-eye rash he or she has nothing to worry about puts them at medical negligence without testing for the presence of other tick-borne diseases that do not produce a rash at all.
We know that the deer tick here in Maine carries Lyme, anaplasmosis, babesia, and Powassan virus. But did you know that there are different strains of tick-borne disease that require their own test and that the standard test given in your primary care doctor’s office will only confirm one strain of Lyme? Or if you do test positive or your provider chooses to treat, is the provider telling you to take the medication with food in your stomach, along with a probiotic (at a minimum of two hours apart) and to limit your time in the sun? Would you believe every time I asked that question at the fair, the answer was ‘no’?”
When dealing with a tick-borne disease, one wants to see an expert who knows about tick-borne disease. Don’t be afraid to ask questions. The more the provider knows, the better one’s care and outcome will be.
This is, after all, your health that you’re dealing with. And don’t be afraid to connect with patients that have been through this. Firsthand experience is better than outdated information any day of the week!
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, a nonprofit 501(c)(3) organization; the Maine partner of the national Lyme Disease Association; and member of Maine CDC’s Vector-borne Disease Workgroup. She is active in Lyme legislation. Email her at firstname.lastname@example.org or go to mldse.org for more information.)