A Lesson In Lyme: Post-Treatment Lyme Disease Syndrome vs. Chronic Lyme

First off, I’d like to define some things for you all. It is a common misconception that Post-Treatment Lyme Disease Syndrome (PTLDS) and Chronic Lyme are the same thing. They are not. PTLDS refers to “A condition that occurs in people who have been successfully treated by antibiotics yet still have symptoms” And Chronic Lyme refers to “People who have been treated with multiple courses of antibiotics and despite that are still infected.” – Both definitions from Healing Lyme: Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsioses by Stephen Harrod Buhner.

It is a seemingly small difference, but a very important one. PTLDS implies that the spirochetes are wholly gone, but the bacterial damage that they inflicted on the nervous system and other, various organic structures in the body is still very much present. As antibiotics do not work for everybody, and is not a 100% cure-all in some cases-these people are left with Chronic Lyme. These people are still infected, and the damage is ongoing.

With PTLDS the spirochetes as a whole are gone, but it is possible for trace spirochete DNA to remain-which triggers an immune response in the body. The body cannot be completely cured until the damage has been rectified. A study by Borgermans et al. in 2014 states that ” An estimated 20% of patients display recurrent symptoms after antibiotic treatment…6 months following antibiotic treatment, 36% of patients reported new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties.” There are legitimate Human and Animal studies to prove the realness of this specific complication of Lyme.

However, if you Google PTLDS you will find a lot of incorrect and confusing information. Many people lump PTLDS and Chronic Lyme together, and go one step further and call them a myth. The lack of widespread legitimacy and support coupled with an ongoing battle between government, scientists, doctors, advocates, etc. on the topic of both PTLDS and Chronic Lyme leaves patients who suffer these real problems at a loss on what to do and how to proceed with treatment.

There isn’t a lot of information out there concerning how to treat PTLDS. The CDC suggests that you consult with your doctor and treat the symptoms. They further suggest that treatment may be similar to that of treating Firbromyalgia or Chronic Fatigue Syndrome-about this they go on to say that “This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available.” Which is only slightly comforting.

A particularly confusing paragraph on the CDC page about PTLDS: “Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications. The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well.” Basically, it sounds like what they’re saying is that being treated with antibiotics, or not, will make you worse but also in the long run you’ll get better somehow but it will take forever. Yay!

Treating Chronic Lyme disease is also a bit mysterious and hard to find solid information on. WebMD offers this advice: “Don’t assume. Tell your doctor your symptoms, and let her check you. Don’t rush to a specialist. For an accurate diagnosis, start with a primary care doctor, says Eugene Shapiro, MD. He’s a professor of pediatrics, epidemiology, and investigative medicine at Yale School of Public Health. Do take your antibiotic as prescribed. Even if you feel better, continue the course. It’s 4 weeks of medications at most. Some experts believe stopping the drugs before your prescription ends may cause symptoms to linger. Do find experts who can help your symptoms. Ask your doctor if it would be worth your while to visit naturopaths, traditional Chinese medicine doctors, psychologists, or other experts. Many medical centers have complementary and alternative medicine experts on site.”

Once again, I must impress upon you all how important it is to feel comfortable with your doctor and your particular course of treatment. All anybody has to offer is guidelines, but you must be your own advocate and make your own rules as they apply to you. There is no hard and fast way to treat Lyme disease, thus much of it is open to interpretation as you figure out what works for you specifically, and what does not work. I realize that this is not the most helpful advice, as many of us (myself included) have experienced much trial and error in the treatment process.

Next time: I would like to continue this topic of information (PTLDS and Chronic Lyme) as it pertains to Alternative Treatments and/or Antibiotic Treatment.



WebMD, “Treatments for CHronic Lyme Diseas (PTLDS)”, http://www.webmd.com/arthritis/features/chronic-lyme-disease#

Lymedisease.org, “Chronic Lyme Disease”, https://www.lymedisease.org/lyme-basics/lyme-disease/chronic-lyme/

CDC, “Post-Treatment Lyme Disease Syndrome”, http://www.cdc.gov/lyme/postlds/

“Healing Lyme: Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsioses” by Stephen Harrod Buhner

Hannah Barry

About Hannah Barry

I am a 26-year-old Mainer. I was bit by a tick 4+ years ago and I've been battling Lyme disease and its various coinfections ever since.