By most definitions, a person who is literate is well educated.
So a “Lyme literate” doctor is good thing, right?
What is a Lyme-Literate Doctor?
That you can get Lyme disease after a tick bite is well known by most folks, even if they don’t live in an area with a lot of confirmed cases.
Early symptoms are also well-known, including flu-like symptoms ( fever, chills, headache, fatigue, muscle and joint aches), swollen lymph nodes, and the classic erythma migrans rash.
Later symptoms of Lyme disease, when it isn’t treated right away, can include more rashes, arthritis, heart palpitations or an irregular heart beat, facial palsy, severe headaches and neck stiffness, nerve pain, and problems with short-term memory.
Fortunately, that there are many antibiotic regimens that can effectively treat Lyme disease, including amoxicillin, isn’t a huge secret.
So do you need to see a “Lyme literate” doctor to get diagnosed and treated if you think you have Lyme disease?
That’s actually the last thing you want to do.
The first thing you want to understand is that the term “Lyme literate” doctors is actually kind of ironic. These are not literate doctors, at least not in the sense that they are educated and practice evidence based medicine.
They are often alternative medicine providers who think that you can get Lyme disease anywhere, even if you don’t live in and haven’t traveled to an area with ticks capable of transmitting Lyme disease.
Many also diagnose folks with many different kinds of non-specific symptoms as having Lyme disease, especially because they misuse tests for Lyme disease as screening tests, or simply misinterpret the results. Tests that often lead to false positive results and folks getting misdiagnosed with chronic Lyme disease.
“Once serum antibodies to B. burgdorferi do develop, both IgG and IgM may persist for many years despite adequate treatment and clinical cure of the illness”
Murray et al. on Lyme Disease
They also often think that it is likely that if you have Lyme disease, then you are also likely to have many coinfections, including Bartonella or Mycoplasma. And that the Borrelia burgdorferi bacteria can hide in our bodies, creating persistent infections, even passing through breastmilk or causing congenital Lyme disease.
“You can access a variety of online resources and directories to locate doctors who are specifically trained in identifying and treating tick-borne illnesses. This is particularly important if you suspect that you may have Lyme disease since it is the most frequently misdiagnosed of all tick-borne diseases. Finding a Lyme-literate medical doctor (LLMD)—or a physician who is familiar with the vast range of symptoms that may indicate infection at various stages of the disease, as well as potential coinfections and other complexities—can help ensure that you get the right treatment, right away.”
IGeneX Inc. on How to Find Doctors Who Can Help with Your Tick-Borne Disease
Why does IGeneX Inc. want to help you find a Lyme-literate doctor? Maybe because IGeneX Inc. sells the tests that many Lyme-literate doctors use to diagnose Lyme disease and chronic Lyme disease! Tests that most other doctors don’t recommend doing.
“The controversy is a nice model for many similar controversies: the science doesn’t support the existence of the disease, but a dedicated group of activists, including some scientists and physicians, feel their extensive experiences more than make up for lack of data. What some of us have problems with is not only the lack of data, but also the willingness of people who believe in this to go about trying to prove it in unconventional ways, for example, relying on lab tests that are not validated.”
Lyme disease—who is credible?
Still, not everyone knows about Lyme disease.
And if you don’t mention a history of a tick bite, didn’t notice a tick bite (Lyme ticks are very small), or don’t have the classic erythema migrans rash, then diagnosis might be delayed.
Tips from Lyme Disease Country
So what should you know to be literate about Lyme disease and be prepared if a tick ever bites your child?
- you can prevent Lyme disease by avoiding tick bites and removing ticks as quickly as possible after they bite you, which is why it is important to do use insect repellent and do regular tick checks after spending time outdoors, especially if you were in wooded, overgrown areas or places with tall grass or unmarked trails.
- just because you were bitten by a blacklegged tick, it doesn’t mean that you will develop Lyme disease. In general, only 2% of tick bites result in Lyme disease.
- in most cases, ticks don’t need to be tested for Lyme disease, after all, even if the tick tested positive, it doesn’t mean that it transmitted the Lyme bacteria during a bite.
- Lyme disease isn’t the only tick-borne disease that we are concerned about, so do tick checks even if you aren’t in a Lyme endemic area.
- except in very specific cases in high risk areas, people shouldn’t usually be treated with antibiotics after a tick bite, just in case they might develop symptoms of Lyme disease
- according to the American Lyme Disease Foundation, eight states, including Arizona, Colorado, Idaho, Montana, Nevada, North Dakota, Utah, and Wyoming, don’t have the Ixodes ticks that transmit Lyme disease
And know that in addition to your pediatrician, a pediatric rheumatologist or pediatric infectious disease specialist can help you if you think your child has Lyme disease. Unfortunately, late symptoms of untreated Lyme disease can be serious. That makes early diagnosis and the return of a Lyme disease vaccine important.
What about Lyme-literate doctors who say that they specialize in caring for patients with Lyme disease? Understand that the term “Lyme-literate” is simply a dog whistle for alternative medicine providers and websites who are likely to offer non-evidence based care.
More on Lyme Disease and Lyme-Literate Doctors
- American Lyme Disease Foundation
- Tick ID Card
- Lyme Disease
- CDC – Lyme disease: What you need to know
- CDC – Two-step Laboratory Testing Process
- Is it Possible to Make a Valid Diagnosis of Lyme Disease Based on Symptoms Alone?
- Living in the Epicenter of Lyme: Tips for Prevention of Lyme Disease
- Feeling Worse After Treatment? Maybe It’s Not Lyme Disease
- CDC – Lyme Disease Frequently Asked Questions (FAQ)
- CDC – Post-Treatment Lyme Disease Syndrome
- The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America
- NIH – Lyme Disease
- CDC – Lyme Disease
- CDC – Trends in tickborne diseases
- FDA – Ticks and Lyme Disease: Symptoms, Treatment, and Prevention
- CDC – Tickborne Diseases of the US: A Reference Manual for Health Care Providers, Fifth Edition (2018)
- What To Do After a Tick Bite
- Lemons and Lyme: Bogus tests and dangerous treatments of the Lyme-literati
- Block Tick Bites and Lyme Disease
- Lyme disease—who is credible?
- CDC – Lyme Disease Stories
- Lyme Testing
- Fake diseases, part deux–chronic Lyme disease
- Chronic Lyme disease: misconceptions and challenges for patient management
- CT Politicians Protect Lyme Quackery
- The NEJM Takes On Lyme Quackery
- Many tests to diagnose Lyme, but no proof they work
- Chronic Lyme Disease – Another Negative Study
- Does Everybody Have Chronic Lyme Disease? Does Anyone?
- Chronic Lyme disease – is there any scientific evidence supporting it?
- Study – Unorthodox Alternative Therapies Marketed to Treat Lyme Disease
- Florida revokes medical license of “Lyme literate” doctor
- A tale of quackademic medicine at the University of Arizona Cancer Center
- Full of Energy
Last Updated on August 6, 2018 by Vincent Iannelli, MD