Dr. Kyle Warren
Meghan Feir Walker
Post-treatment Lyme disease syndrome (PTLDS) is the name the CDC is now calling chronic Lyme, but what does this name entail? How has the CDC updated its treatment plan for chronic sufferers of Lyme? And, most importantly, what does all of this mean for Lyme patients?
What is Post-Treatment Lyme Disease Syndrome?
PTLDS vs. chronic Lyme: Is there a difference?
Post-treatment Lyme disease syndrome (PTLDS) is what the CDC chose as the new name for chronic Lyme, though, for various reasons, many in the Lyme community will continue calling it chronic Lyme.
It took decades for the CDC to acknowledge that Lyme can cause chronic, long-term symptoms and for them to admit that chronic Lyme and the treatment for it weren’t pseudoscience. It was a big step for everyone in the Lyme community when the CDC changed its tune and updated its view of it on its website in 2023.
Unfortunately, while this acknowledgement is great news that’s well overdue, there are legitimate concerns when it comes to their chosen name for chronic Lyme and their approach toward it. On one hand, I am optimistic, but on the other, this name could potentially lead Lyme research down the wrong path. Let’s explore both my optimism and skepticism about officially recognizing chronic Lyme as “PTLDS.”
The logistical problem…Who doesn’t fit the new label?
First off, by calling it “post-treatment” Lyme disease syndrome, you’re excluding a large demographic of people who haven’t actually been treated for Lyme in a regular hospital or clinic. “Post-treatment” implies you received the CDC-recommended antibiotic treatment right after a tick bite, but you still developed ongoing symptoms.
There are many people (about 50% of my patients) who never went on doxycycline because they never saw the tick or the tick bite, never had the rash, they were denied treatment, or they ignored it and hoped for the best, only to develop major symptoms later.
How can you be “post-treatment” if you never got treated? Have they even read the studies that show getting on antibiotics 60 days after getting infected greatly reduces their effectiveness?
It may seem like a small semantic, but the devil is in the details. Our entire medical system and insurance programs are extremely picky about labels, and creating a label that immediately doesn’t fit a large group of people is irritating. The frustrating scenario goes like this:
“We can’t diagnose you with post-treatment Lyme because you haven’t been treated. Here, go spend more money to see six other doctors who are also confused.”
I am highly concerned that the confusion around this name will still lead to many sick people bouncing through the medical system without an accurate diagnosis. This was an extremely frustrating scenario for my family and me, and other sick patients. Read more about medical gaslighting here.
How common is it to develop PTLDS?
Unfortunately, catching an acute Lyme infection early doesn’t always nip it in the bud.
In a 2022 Johns Hopkins study, researchers found that even if a patient catches a Borrelia burgdorferi (Lyme disease) infection immediately and is promptly placed on the standard CDC-recommended antibiotics, those patients are still at risk for developing ongoing symptoms and infection. According to the Johns Hopkins study, it’s estimated that 10-14% of people who get bitten by an infected tick and receive treatment still go on to develop symptoms and long-term issues.
So while getting immediate treatment for a Lyme infection works about 80-90% of the time, there is still a group that needs more extensive help.
For more information, read our article, “How High is the Risk of Developing Chronic Lyme Disease?”
Why do symptoms linger? Missing co-infections leads to failure
The CDC itself 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.
As mentioned earlier, 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% 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.
But why is it that some people go on to develop post-treatment Lyme disease syndrome/chronic Lyme?
Many factors can be at play, but the most common reasons are due to an already compromised immune system and the additional presence of co-infections. It’s estimated that in 93% of chronic Lyme cases, other co-infections are also present, which makes it much more difficult for your immune system to ward off these intruders.
Unfortunately, while the CDC is acknowledging Lyme, there is no awareness yet of the very important co-infections, such as Babesia, Bartonella, Anaplasma, and others. One of my teachers, Dr. Richard Horowitz, calls this disease MSIDS, which stands for multiple systemic infectious disease syndrome. In the definition of post-treatment Lyme, there is no mention or acknowledgement of the multiple infections. I believe this will lead to huge failures in treatment approaches.
How long can symptoms last?
Missing biofilm and stationary forms of Lyme lead to failure
Most people know that Lyme disease can cause an acute, flu-like illness following an infected tick bite. This can often result in headaches, fatigue, fevers, aches, other symptoms, and, occasionally, the famous bullseye rash, erythema migrans. This acute stage is when the standard two to four weeks of antibiotics can work well.
The problem is that somewhere between two to six months after getting infected, Lyme bacteria transform from their early (much easier to kill) stage to their settled-in, late-stage form (chronic Lyme). For more information on how Lyme transitions from an acute to a chronic state, click here.
Of the 10-20% of people who go on to develop chronic problems after being treated with antibiotics for an acute Lyme infection, symptoms can vary greatly. However, the most common symptoms include muscle and joint pain, headaches, neck aches (Lyme loves collagen and tissue), fatigue, and neurological problems, such as neuropathies, central nervous system disorders, and sleep issues. These symptoms will almost always continue, progress, or change until the Lyme infection is properly addressed.
When you throw in co-infections, the symptoms can become even more varied and severe. It’s always important to remember that ticks often carry more than just one infection. They might be carrying nothing, only Lyme, only a co-infection, or a combination of Lyme and/or co-infections. The vast majority of people who have chronic problems do not have Lyme alone.
While we don’t go into detail about co-infections in this article, you can learn more about co-infections in our many other articles and videos.
What happens if Lyme isn’t addressed early?
Like so many other infections, the sooner you discover a Lyme infection, the easier and faster it is to treat. If you know you’ve been bitten, received a positive Lyme test, and/or presented symptoms, a doctor will usually give you the standard two to four weeks of antibiotics. As mentioned, these antibiotics are 80-90% effective in the first month after getting infected. However, the longer it takes to find the infection and address it, the less effective the antibiotics become.
Lyme, unfortunately, isn’t often a straightforward process. Some doctors refuse to give antibiotics unless a patient has either taken and received a positive Lyme test or has presented the classic bullseye rash.
This is problematic on many levels:
- The standard Lyme test is severely outdated and only tests for one species of Lyme, Borrelia burgdorferi. You can still have Lyme and not be infected with B. burgdorferi, but the doctor will tell you your Lyme test is negative.
- Regular clinics and hospitals don’t test for co-infections, even though 93% of chronic Lyme patients have at least one co-infection.
- Many people don’t present the classic bullseye rash.
- Many people don’t notice tick bites, especially from nymph or larval tick forms.
- While the antibiotics are extremely effective 80-90% of the time (early on), 10-20% of people still go on to develop chronic Lyme, aka post-treatment Lyme disease syndrome (PTLDS).
- Many patients have other co-infections that weren’t eradicated with the Lyme treatment.
Learn more about untreated Lyme in our article.
What are the stages of Lyme disease? PTLDS ignores this
For years, Lyme advocacy groups have understood that Lyme bacteria are still alive in chronic Lyme cases. There are chronic forms, stationary forms, and biofilms that protect the Lyme bacteria. In the case of chronic Lyme, while it’s growing more slowly than during the acute phase, you still have low-abundance Lyme bacteria still active and growing, causing ongoing symptoms. There is a plethora of evidence showing that this is absolutely true.
Learn more about the different stages of Lyme here.
Unfortunately, those in the “Let’s call this post-treatment Lyme disease syndrome” camp are pushing away from that evidence and ignoring it.
The CDC’s unscientific approach toward PTLDS treatment and the irony of me defending antibiotics
In the past, I think the Lyme community has put too much emphasis on the killing phase of Lyme treatment and not enough emphasis on supporting the immune system and helping repair the body. However, the CDC is ignoring science and jumping to an extreme by ignoring the kill phase entirely.
Their reasoning for this is that they believe long-term antibiotic use has detrimental effects on the body, which I totally agree with. However, as usual, they’re ignoring the power of herbs and nutraceuticals in killing Lyme bacteria.
The advocates for chronic Lyme, who've been fighting this for 30 years, are saying there is still some resistant, persistent Lyme, and therefore, we need to do something that helps kill the bacteria.
From a standard medicine point of view, this means going in with the big guns—having patients take three or more high-dose antibiotics for months to years.
When you are killing Lyme in the chronic phase, I firmly believe that the herbal route is better at killing these resistant biofilms and stationary forms of Lyme bacteria than high-dose antibiotic therapy. That being said, you need something in the program to kill the remaining resistant, persistent bacteria.
In January 2025, the CDC wrote a new update on its stance regarding treatment for PTLDS, and it leaves a huge hole in treating post-treatment Lyme. While they’re acknowledging there are long-term symptoms that haven’t gone away, their answer is to suppress the immune system instead of helping defeat the bacteria.
If you look through the references on their treatment page, you'll see they are not references involving a solution. They are references against long-term antibiotic therapy, references against the long-term use of antibiotics, and the harm that they might cause.
To put it bluntly, I believe underemphasizing the killing protocol for chronic Lyme/PTLDS will be a catastrophe. To make matters even worse, instead of helping the immune system clear up the remnant protein fragments from Lyme, they're going to block the immune system from creating inflammation with immune-suppressing drugs. Based on my experience, this will only make it harder in the long run for those with Lyme to get better.
Immune-suppressing drugs may provide some short-term relief because the inflammation comes down, but it will make people’s outcomes much worse.
In the long run, I think this approach will make it harder for doctors, like me, to help people who have Lyme disease. I’m afraid that I’ll have more and more patients on heavier immune-suppressing drugs, and they are always my most difficult cases.
When you have Lyme and co-infections still causing problems and you’re taking immune-suppressing therapies, you have to be very careful. Any long-term immune-suppressing therapy leads us down a dangerous road where the bug continues growing because you're inhibiting your body's fight against it.
Here’s the truth: There are definitely risks to doing long-term, high-dose antibiotics. This is why I firmly believe, based on scientific research and my experience helping those with chronic Lyme, that the herbal route is less toxic, can be more dialed into specific issues, and is better at killing these chronic forms.
I'm not a huge fan of the “Just nuke it with antibiotics” strategy. However, I believe that the CDC’s post-treatment Lyme approach, which is saying you don't have to do anything to kill it, is absolutely wrong, and it's going to lead Lyme patients down a tragic, catastrophic road.
The clean-up phase of Lyme (new article coming!)
In recent years, there has also been research on the effects of fragments of Borrelia burgdorferi proteins (dead Lyme bacteria) and how they still cause an immense amount of inflammation.
Under normal circumstances, when you get a bacterial infection, your body will destroy the bug and will be able to clean out the dead fragments of that bug through macrophages and the lymph system.
However, with chronic Lyme, modifications to the bacteria have been made from the interaction with the tick proteins, making it much harder for your immune system to clean up the dead fragments than usual. The bacteria may be dead, but the immune system is still reacting to the dead protein remnants.
This means you need to not only kill the remaining, active Lyme bacteria, but you’ll also need help with the aftermath of the battle to clear these proteins out properly. This is super important and why we place such an emphasis on immune and lymph support and detoxification with our patients.
Functional Health Support for Lingering Lyme Symptoms
The RHS approach toward chronic Lyme/PTLDS
For all of the aforementioned reasons, we take a three-fold approach toward chronic Lyme/PTLDS and co-infections at Restorative Health Solutions.
In any Lyme program, you need:
- Things that kill the remaining bacteria
- Things that help balance the immune system, which is struggling to do its job
- Whatever is needed to repair the broken parts of your body, including support for collagen production, connective tissues, the nervous system, and whatever other parts of the body have taken the brunt of the attacks
Take control of your health
If you have unexplained symptoms and suspect you may have chronic Lyme/PTLDS or other tick-borne co-infections, we would love to help you in our clinic heal and live a healthy life.
If you’re ready to take control of your health and look into whether Lyme disease and co-infections are the cause(s) of your health problems, reach out to our clinic and set up your free consultation with one of our team members. They will go through your history, symptoms, and next steps with you.
Discovering what your body is fighting is the first step in recovering. You can get better from Lyme and co-infections!
To learn more about Lyme disease and co-infections, check out our Lyme page and blog.
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