Madison Area Lyme Support Group

One of the most common pieces of advice for Lyme patients is to find a Lyme-literate doctor (LLMD) who can give an accurate Lyme disease diagnosis and provide the appropriate care. But what does that actually mean? What makes a doctor Lyme literate?

A quick Google search makes this question seem harder to answer than it really is. This blog intends to clear up misconceptions about what a Lyme-literate doctor is and isn’t so that you can find the quality care you need.

But first – who needs a Lyme literate doctor?

In an ideal world, a Lyme disease diagnosis would be straightforward for any physician. You would notice symptoms soon after a tick bite and immediately make a doctor’s appointment. Your doctor would note your symptoms and give you a blood test. The test would come up positive, showing the disease in your system. Your doctor would then prescribe antibiotics, and your disease would clear up completely.

Unfortunately, for many people, resolving a case of Lyme disease is not so simple. In fact, just getting the right diagnosis in the first place can be a challenge. Problems with the currently recommended diagnostic testing, plus the challenging nature of identifying Lyme disease symptoms – which are often non-specific or similar to those of other diseases, especially the farther along the infection is – all make getting a Lyme disease diagnosis and treatment difficult for many patients.

Some people seek out Lyme-literate doctors after years of receiving inaccurate or unhelpful diagnoses and treatments that don’t make their symptoms go away. These may be patients with late stage Lyme, chronic Lyme, or even Post-Treatment Lyme Disease Syndrome (PTLDS). Others know they are at risk of Lyme disease – for example, if they found a tick on them – and seek out a Lyme-literate doctor who they know will be able to accurately interpret their symptoms and test results.

In other words, patients who aren’t able to get the answers or relief they need from other specialists often seek out the care of a Lyme-literate doctor.

Now, what actually makes a doctor Lyme literate? There are a few skills, qualifications, and characteristics you should look for.

A Lyme literate doctor:

…is familiar with the vast range of signs and symptoms that may indicate Lyme disease at various stages.

Lyme disease is one of the trickiest infectious diseases to diagnose. One reason for this is its non-specific symptoms that mimic those of other diseases, such as:

• Fever and chills
• Muscle aches
• Joint aches
• Fatigue or shortness of breath (especially in later stages)
• Heart arrhythmia (especially at later stages)

Misconceptions about what Lyme looks like can complicate the diagnostic process for physicians who don’t have sufficient experience with Lyme. For example, many people believe you can’t have Lyme disease if you don’t have the characteristic bull’s eye rash (erythema migrans). However, the Centers for Disease Control and Prevention note that this rash only shows up in 70-80% of patients. Dismissing a patient because they don’t have the rash can lead to missed or misdiagnosis.

LLMDs have become experts in Lyme disease based on years of experience working with Lyme patients. Many are not infectious disease doctors, but come from a range of backgrounds. By working closely with and treating Lyme patients over the years, they learn to recognize the tricky signs and symptoms of the disease. Some even use that expertise to train other LLMDs.

…is familiar with the coinfections that may be present with Lyme.

Lyme disease is only one of many tick-borne diseases active in the U.S. Many of these diseases crop up as coinfections of Lyme, which can interfere with the diagnostic process and treatment if the proper tests aren’t used or interpreted correctly. A Lyme-literate doctor would be prepared for these challenges.

…may be listed on one of the Lyme-literate doctor directories.

There are several resources at your disposal that can connect you with doctors who can recognize and treat Lyme disease. These directories include medical professionals who are members of organizations dedicated to fighting Lyme, including:

• International Lyme And Associated Disease Society (ILADS) – Doctor Search
• LymeDisease.org – Find Lyme-Literate Doctors
• Global Lyme Alliance – Find a Lyme-Literate Medical Professional
• Lyme Disease Foundation – Doctor Referral

Note: Some of these organizations may require you to submit a form or create a login to access their databases.

In addition, you may also want to explore organizations and support groups that can connect you with other patients in the Lyme community, such as:

• Lyme Disease Foundation – Find State Support Groups
• Lyme Disease Foundation – Support Groups
• Daily Strength – Rocky Mountain Spotted Fever Support Group
• What is Lyme Disease – Website and Support Groups by State

…has positive reviews or testimonials from other Lyme patients.

It’s important to do plenty of research to make sure you’re finding the right fit before spending precious time and money on diagnostics and treatment. Get as much information as you can about any doctor you’re considering by reading reviews or testimonials from other patients. If possible, get word-of-mouth or doctor referrals.

…is open-minded and willing to listen to your experiences.

There are many reasons a doctor might not be able to give a patient an accurate Lyme disease diagnosis, and they’re not all malicious.

For example, Lyme disease is not well taught in medical school, leaving many physicians in the dark when Lyme patients show up at their offices.  Another barrier to Lyme expertise is the controversial nature of Lyme disease. Many physicians – even ones who want to do right by their patients – are fearful of retribution from IDSA. This, combined with a simple lack of knowledge or experience, can make doctors overly cautious, unable to consider the possibility of Lyme, or even ill-equipped to use or interpret the proper diagnostic tests.

It’s a little like taking your car to the shop: you wouldn’t take your Toyota to a BMW dealer and expect them to be able to fix your engine. For the same reason, if your pediatrician does not have enough experience with Lyme in children, they might not be the best person to deal with your child’s Lyme.

Lyme-literate doctors, on the other hand, are both knowledgeable and open-minded enough to see the meaning in your experiences and symptoms, and thus willing to pursue the most up to date testing and appropriate treatment.

A Lyme-literate doctor is NOT:

…a “quack” or “fake” doctor.

There is a misconception that Lyme-literate doctors aren’t “real” doctors. While bad actors do exist in any field, true Lyme-literate doctors are licensed medical professionals who use their experience with Lyme disease to help patients with Lyme or other tick-borne diseases.

These can be infectious disease specialists, but do not have to be. An LLMD just needs to have extensive experience with Lyme disease, Lyme patients, and common coinfections. One way to vet doctors who may be able to help you is to find out, if possible, the percentage of their patient base that are Lyme patients.

Using the directories listed above, as well as trusted testimonials, can help you find licensed health care providers with the proper credentials. Your primary care doctor may even be able to refer you to a LLMD.

In sum:

A Lyme-literate doctor is simply a professional, licensed physician who has the knowledge, experience, and open mind required to help patients with the symptoms and complications of Lyme disease. It’s more important than ever for more physicians to become Lyme literate and/or for LLMDs to share their expertise by training other doctors. All too many patients must travel long distances, perform extensive research, or incur high costs to find LLMDs who can give them the answers and treatment they need.

To learn more about how to find a Lyme-literate doctor who can help with your illness, read IGeneX’s blog on the subject or post a question on the IGeneX Facebook page. If you’d like to know more about what kinds of tests these doctors may use, you can also check out IGeneX’s tests for Lyme and other tick-borne diseases. Getting the right testing and care from the right physician is key to overcoming your tick-borne disease.

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**Comment**

Great information.

A few points:

1. Due to the poor doctor education on Tick-borne illness (TBI) as well as the continued polarization within mainstream medicine (and the media’s regurgitation of propaganda) on this complex illness, I would bypass mainstream medicine (MSM) altogether unless you are lucky enough to see a tick dangling from your arm with a blatant EM rash – which in and of itself is diagnostic for LD – no testing required.  I’ve had patients tell me even when they tested positive 3 times, mainstream doctors told them it was a “false positive” and they weren’t infected!  Mainstream medical doctors would rather diagnose you with ANYTHING other than TBI.
2. The abuse patients experience from MSM is very real & happens frequently:  https://madisonarealymesupportgroup.com/2017/01/11/sick-shaming-of-lymemsids-patients/ 
3. Those getting the EM rash is far less than what the CDC states:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/  Research shows it to be highly variable (25-80%).  
4. It isn’t just patients who are abused.  Lyme literate doctors (LLMDs) are also hunted down, persecuted, and vilified:  https://madisonarealymesupportgroup.com/2018/06/14/corruption-human-rights-violations-against-lyme-doctors-scientists-and-parents-now-on-united-nations-record/
5. The PTLDS moniker is damaging patients because the denial of evidence showing persistent Lyme infection and is a critical obstacle to adequate treatment:  https://madisonarealymesupportgroup.com/2020/08/13/slyme-an-interview-we-need-to-drop-the-term-ptld-like-a-bad-habit/
6. Finding a LLMD is a bit of a gauntlet.  Your best resource is your local support group.  These patients have first-hand knowledge of these doctors, their fee structure, their treatment regimen as well as their personality.  Also, it isn’t uncommon to switch doctors – even numerous times or to need more than one.  This complex illness is very challenging to treat and sometimes you just have to seek out more than one doctor.  I do encourage you; however, to stick with a plan/doctor as long as you can before changing as this does take considerable time to treat.  While you may experience improvement, this is relapsing in nature.  You can have periods where you plateau and need to switch meds/approach up and try different things.  I felt like quitting my doctor 1,000 times but I’m glad I didn’t.  This is unlike anything you’ve ever treated before and at times you question your own sanity.  Normal.  Been there, done that.

HANG TOUGH AND NEVER, EVER QUIT!