NIH Funds Lyme/PTLDS Research

What this means for your Lyme journey

In July 2023, the National Institute of Health (NIH) announced they will be funding post-treatment Lyme disease syndrome (PTLDS) research. They will award approximately $3.2 million in first-year funding. 

More funding for research is always exciting news, but this isn’t without its frustrations. While it’s wonderful that chronic Lyme disease is getting more attention from mainstream organizations, in this article, I want to highlight what this means for your chronic Lyme and co-infection(s) journey. 

What is PTLDS?

PTLDS stands for post-treatment Lyme disease syndrome. It defines Lyme disease infections that have entered into a chronic state after early-stage Lyme disease treatment has already been administered. 

In other words, you received the CDC-recommended antibiotic treatment right after a tick bite, but you still developed ongoing symptoms.

Why I don’t like the term “post-treatment Lyme disease syndrome”

Going forward, PTLDS is the new name for chronic Lyme. But I have to say, I’m not a fan of the term “post-treatment Lyme disease syndrome.” 

Post-treatment Lyme disease syndrome is essentially the same thing as chronic Lyme. The only difference is in the terminology, yet this can make a big difference for people who never received antibiotics when first bitten. After all, you can’t be in a “post-treatment” group unless you’ve been treated. 

Because “treatment” is in the definition, you will still have many Lyme sufferers falling through the cracks of the medical system.  

“Post-treatment” Lyme disease syndrome infers the patient has already gone through a round of treatment for early-stage Lyme disease, but many suffering from chronic Lyme disease were never treated for Lyme in the first place. Whether they received neglect and ignorance from doctors instead of proactive help, they didn’t realize they had been bitten, or they mistook their symptoms for something else, there are various reasons why many Lyme sufferers never went through the CDC-recommended protocol for Lyme in the first two to three months following infection.

By creating this new term, they are excluding a large percentage of people with this disease. 

However, the fact that a chronic form of Lyme disease is being recognized means research can be funded, so this is still a step toward progress, even if they are still far behind in Lyme literacy.

Finally, recognition of how Lyme can cause neurological problems

In their press release, “NIH awards will fund Post-treatment Lyme Disease Syndrome research,” the NIH stated the National Institute of Allergy and Infectious Diseases (NIAID) has awarded five research projects that will help them “better understand Post-treatment Lyme Disease Syndrome (PTLDS), which is a collection of symptoms, such as pain, fatigue, and difficulty thinking or ‘brain fog,’ which linger following standard treatment for Lyme disease.”

First off, I want to relish that they are finally recognizing some of the neurological aspects of this disease. They are slowly realizing that Lyme disease can cause cognitive issues. 

Patients with chronic Lyme often seek help for their symptoms from neurologists, psychiatrists and psychologists. Why is this the case? It’s because Lyme disease bacteria can hit the nervous system hard and cause a myriad of problems with cognition, mood, memory and much more.

As a doctor who works extensively with neurologically affected Lyme patients, it brings me hope to see this progress. For mainstream medicine to realize that Lyme can not only cause pain but also neurological and psychiatric problems is a huge step forward. 

In 2022, both a Johns Hopkins study and a study in Belgium focused on chronic Lyme/PTLDS. They both mentioned neurological symptoms as being a part of the disease. In the Belgium study, six of the major 12 symptoms in PTLDS mentioned were neurological.

For years, mainstream medicine has known Lyme disease is able to cause fatigue, muscle and nerve pain, but now they will start waking up to its neurological impact as well. 

Growing recognition that chronic Lyme is a monumental problem 

The CDC estimates that nearly 500,000 people in the United States alone are infected with Lyme disease yearly and that 10-20% of them will end up with PTLDS. Even in the most ideal situation where people start taking antibiotics immediately following a tick bite, PTLDS is said to occur in at least 10 percent of all Lyme disease cases following the CDC’s recommended treatment protocol.

If 10-20 percent are developing PTLDS, that’s a huge number of people being affected by this often debilitating disease. We can safely assume the number of people who get infected with Lyme disease is even higher than 500,000 because so many patients who develop chronic Lyme go undiagnosed for years.

The Acting NIAID Director Hugh Auchincloss, M.D., said, “As tickborne diseases, including Lyme disease, become more common and widespread in the United States, it is increasingly urgent that we understand all facets of the disease, including the root causes of PTLDS.”

The medical establishment is waking up, but there’s still a long way to go

For 40 years, “alternative health” doctors, patients, and researchers have been trying to wake up the medical establishment concerning chronic Lyme disease and co-infections. Patients have been crying out for help from doctors and specialists and have usually received next to no help. 

Thankfully, the CDC finally woke up in the spring of 2022 when they quietly added information acknowledging the reality of chronic Lyme to their website. I went over my thoughts on that announcement in this article and video

CDC finally acknowledged chronic Lyme is real.

Better late than never. However, there is still plenty of information on their website that is inaccurate, downplayed, and, to be quite honest, infuriating. 

To a degree, the same type of frustrations accompany this research funding announcement. 

What will these funds go toward?

Along with stating the increasing impact of Lyme disease in the United States, Auchincloss also said they “anticipate that the research supported by these awards will provide vital information on how to diagnose and treat this complex set of symptoms.”

For years, I have been discovering the root causes of my patients’ health issues in order to effectively treat and help them live healthy lives. That being said, I love that they mentioned going after root causes as a priority.

Unfortunately, none of the studies they are funding focus on the treatment of PTLDS. All five studies are going toward diagnosing and testing. 

One of the frustrating statements both the CDC and NIH have made is that there is no proven treatment for PTLDS. The CDC basically said, “We don’t know what causes it, and we don’t know there’s a proven treatment.” 

In their article, the NIH said, “Unfortunately, there is no standard treatment for PTLDS. Although long-term courses of antibiotics are often used, clinical studies have shown this approach to be either ineffective or that the risks and side effects of long-term antibiotics outweigh their potential benefits.”

This makes it even more confusing as to why none of the funds given in these NIAID awards are going toward researching effective treatments. The $3.2 million for research is only going toward testing and diagnosing PTLDS.

As mentioned in the article, the new NIAID awards recipients and studies are:

Virginia Tech, Blacksburg
Project title: The natural release of unusual peptidoglycan fragments drives persistent Lyme disease symptoms in susceptible hosts

Massachusetts Institute of Technology, Cambridge
Project title: Unlocking serology’s secrets: harnessing novel immune biomarkers to predict Lyme disease progression and recovery

Tufts University, Boston
Project title: Auto-antibodies as predictive markers for Post-treatment Lyme Disease Syndrome

Johns Hopkins University, Baltimore
Project title: Determinants of post-treatment phenotypes in Lyme disease

Arizona State University, Tempe
Project title: Discovery of early immunologic biomarkers for risk of PTLDS through machine learning-assisted broad temporal profiling of humoral immune response

Chronic Lyme research has been chronically underfunded. To showcase this, look below to see a comparison of some of the research funding in 2018. 

Examples of NIH award funding in 2018: 

$3 billion for HIV/AIDS

$200+ million for Malaria

$400+ million for Tuberculosis

$30 million for Lyme disease

While none of these studies are designated for discovering viable treatment options, I’m hoping these current studies will continue pointing to how big of a problem Lyme is and that more money and research need to go toward finding effective treatments for chronic Lyme disease/ PTLDS.  

Concerns about co-infections: Why are they being ignored?

One of the main concerns many Lyme doctors and I have is that there is no mention of or attention toward Lyme co-infections. It’s imperative they realize the immense impact co-infections can have on patients. 

Over 90% of people with Lyme disease also have at least one co-infection. The most common co-infections include Babesia, Bartonella and Anaplasma.

While they are beginning to recognize Lyme, the many co-infections that cause direct and ongoing problems with recovering from Lyme disease haven’t been added to the picture yet. This is significantly important to the Lyme community, and we must continue educating doctors and pushing for more research and support.

The victories of these developments for you and me

When my family and I were facing chronic Lyme and co-infections only 10 years ago, we didn’t have much in the way of scientific research to back us up. This is why it is extra exciting to see that more research is continually happening and that mainstream doctors are being forced to wake up to the reality that chronic Lyme is real.

It is no longer an option for doctors to tell you they don’t believe in chronic Lyme. It is real, and study after study continues to prove them wrong. Never take “We don’t believe in chronic Lyme,” “Lyme isn’t a thing” or “It doesn’t exist” as an answer!

Compared to other disease funding, this $3.2 million award for PTLDS research is just a drop in the bucket. However, I think it’s safe to say that this is just the beginning. Researchers, Lyme-literate doctors and patients will continue convincing major medicine that chronic Lyme is a huge deal. Let’s hope that more money and research will go toward finding effective treatment options. 

I hope this news encourages you as it did for me. To hear me talk about this subject in greater detail, click here.

By Dr. Kyle Warren

Edited by Meghan Feir Walker