Jenn Hyla

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Why is Lyme Disease Treatment Controversial? What every Lyme patient needs to know

Jenn Hyla

There is a lot to be said about the controversies that surround Lyme disease. To be honest, it fills multiple books!

So, I’m only going to cover the bits that I believe will help Lyme disease patients in their healing journey. There are tons of resources for you to dive deeper into the rabbit hole of controversies, but I recommend staying focused while you’re trying to heal.

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The main reason Lyme disease treatment is considered controversial is that, when caught early, before the bacteria spread throughout the body, a short course of antibiotics may be all that’s needed to wipe out B. burgdorferi.

However, due to the bacteria’s stealthy nature and defensive mechanisms, once the bacteria has disseminated throughout the body, the standard treatment for Lyme disease fails for many patients. 

Despite thousands of peer-reviewed studies, and the medical community reporting high treatment and testing failures, the CDC has maintained its stance that Lyme disease is both easy to diagnose and easy to treat.

The CDC sanctioned Lyme treatment protocols do not consider the length of infection, symptoms, co-infections, or complications.

The CDC protocols state that if a Lyme patient is still experiencing symptoms past the prescribed 1 day to 28 days of antibiotic treatment, these symptoms are now caused by Post-Treatment Lyme Disease Syndrome (PTLDS).

The CDC and Infectious Disease Society of America (IDSA) have little to say about PTLDS. I could not find any information on the first cases of PTLDS or who came up with the term.

There is no medical billing code for patients diagnosed with PTLDS, and there are no treatment recommendations by the CDC. There are very few federally funded research projects being done on PTLDS, and the only treatment mentioned on the CDC website is time and symptom management at your doctor's discretion. 

If your doctor continues to treat you for Lyme disease outside of the CDC protocol they may be held liable for “unprofessional conduct” and can be sued by insurance companies.

Many Lyme treating physicians have gone bankrupt and even had their medical licenses suspended for treating outside of the CDC guidelines. 

With high treatment failure rates and harsh penalties for treating outside treatment protocols, you can imagine why many doctors might be reluctant to treat Lyme disease. I had to call over 35 different infectious disease doctors before one would see me with my positive Western blot Lyme test in 2015.

Lyme advocacy groups, scientists, and many doctors disagree with the CDC’s protocol and description of PTLDS, and the handling of Lyme disease.

A recent study on patients with chronic Lyme found measurable and widespread brain inflammation after failing antibiotic treatments, suggesting that PTLDS may be caused by persistent infection.

The International Lyme and Associated Diseases Society (ILADS) has created a training program for doctors to become knowledgeable about the complications of Lyme disease, and they all agree that treatment should be dictated by how the patient feels.

How to Find a Lyme Specialist 

Due to the controversies surrounding treatment, finding a “Lyme Literate” physician early on is crucial to creating a treatment plan.

A Lyme Literate Medical Doctor (LLMD) is a licensed physician who has gone through a training course with ILADS. ILADS trained physicians follow patient-centered treatment protocols, and go through a 2 weeks training course, but that doesn’t mean they have all the answers.

Just like all medical professionals, there are both good ones... and some not so good ones. Most LLMDs cannot bill insurance and charge large cash fees, so be sure to research your options and follow your gut instincts. 

ILADS provides referrals on its website ILADS.org to help you find a Lyme Literate physician in your area. They will email you three randomly selected options within a selected radius of your zip code.

https://www.ilads.org/patient-care/provider-search/

Before you go through the ILADS referral process, which offers randomly selected doctors, I recommend searching for a local Lyme disease support group. Facebook groups are a fantastic resource to connect with other Lyme patients in your area and see which doctors they are seeing.

Remember that as people heal they tend to stop showing up in these online spaces. Limit your time to crowd-sourcing answers to your specific questions. It is easy to get swept away with everyone else’s experiences.

Don’t forget that each person is affected differently, so what works for one person may not work for others. 

Full healing may require multiple doctors, so don’t be afraid to move on if you’re not feeling heard or seeing results. In my healing journey, I found each doctor could only get me so far before they seemed to run out of ideas.

I hope you found this information helpful! For more information on Lyme disease, prevention, and holistic treatment options check out my new book, The Lyme Ease Survival Guidebook designed to separate the facts from fiction to educate and empower Lyme patients.

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