The term, Post Treatment Lyme Disease Syndrome (PTLDS), was initially introduced by the Infectious Diseases Society of America (IDSA) as a research definition. However, it has been conflated with clinical diagnosis, and has been used to deny Lyme patients the diagnosis and treatment they need to get well. It also implies without evidence that patients received adequate treatment and that any remaining symptoms are caused by something other than an infection. Sadly, many chronically ill patients suffering from tick-borne disease continue to do just that ~ suffer ~ because introduction of the PTLDS term left the medical provider with no further instructions for caring for their patient and denied many patients without a proper diagnosis allowing for further treatment.

Most researchers and Lyme-literate doctors actually believe that “post-treatment Lyme disease syndrome” does not exist, and that the presence of ongoing symptoms following treatment is really due to ongoing infection in the body that has been inadequately treated. Research and clinical experience now confirms this. 

From the PMC, US National Library of Medicine, National Institute of Health (www.ncbi.nlm.nih.gov/pmc/articles/PMC4847307/):

Most patients with Lyme disease are cured by a 3–4 weeks’ course of antibiotics. However, a minority of them (about 10%) have prolonged somatic and neurocognitive symptoms, such as fatigue, difficulty in sleeping, arthralgia, myalgia, memory impairment, and headache. This condition is called post-Lyme disease syndrome (PLDS) or post-treatment Lyme disease syndrome (PTLDS). These two terms are used interchangeably. The initial term ‘chronic Lyme disease’ was rejected. The latter would suggest that infection with Borrelia burgdorferi (Lyme Disease) may become persistent in this group of patients despite antibiotic therapy. The present medical knowledge contradicts this point of view. However, rheumatologists and internists are now and again visited by patients receiving prolonged antibiotic therapy for many months in treating PLDS. Therefore, there is an urgent need to clarify these controversies.

In a Feb 5, 2019 press release from John Hopkins Medicine, a small study, Johns Hopkins Medicine researchers report they have used an advanced form of brain scan to show that 12 people with documented post-treatment Lyme disease syndrome (PTLDS) all show elevation of a chemical marker of widespread brain inflammation, compared with 19 healthy controls.

Wait! What? We now have “evidence” that supports patient, who continue to claim “ongoing symptoms” in spite of antibiotic treatment? All along, medical providers have convinced their patients that they would be fine and that in time, their symptoms would subside and they would get better. Thank GOD someone listened and took it upon themselves to actually do a study, albeit a small one, (but you have to start somewhere right?) to prove that these patients were not imagining their symptoms. There it was, on the big screen, in black and white images, proof, evidence that backs up and supports the patients. Active infection, inflammation, cause and effects for their symptoms. You are not crazy!

Finally, we have been heard. Results of the study, published in Journal of Neuroinflammation, suggest new avenues for treating the long-term fatigue, pain, sleep disruption and “brain fog” associated with PTLDS, the researchers say. Results of the study, published in Journal of Neuroinflammation, suggest new avenues for treating the long-term fatigue, pain, sleep disruption and “brain fog” associated with PTLDS, the researchers say.

“There’s been literature suggesting that patients with PTLDS have some chronic inflammation somewhere, but until now we weren’t able to safely probe the brain itself to verify it,” says Jennifer Coughlin, M.D., associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine, and one of the first authors of the study report.

Over the last decade, Coughlin and her colleagues optimized a positron emission tomography (PET) imaging technique in which specially labeled molecules—or radiotracers—bind to a protein called translocator protein (TSPO). In the brain, TSPO is released primarily by two types of brain immune cells—microglia and astrocytes—so levels of TSPO are higher when brain inflammation is present. With this type of PET scan, Coughlin’s team says it can visualize levels of TSPO—and therefore levels of inflammation, or astrocyte and microglia activation—throughout the brain. They’ve used it previously to see inflammation in the brains of former NFL players as well as to study brain inflammation in autoimmune diseases such as lupus.

“We thought there might be certain brain regions that would be more vulnerable to inflammation and would be selectively affected, but it really looks like widespread inflammation all across the brain,” says Coughlin.

The Johns Hopkins team cautioned that their study was small, and whether or not the results apply to all people with post-treatment Lyme disease syndrome—such as those with chronic pain but not cognitive symptoms—must await far larger and broader studies. But for now, the researchers hope their results give PTLDS patients some hope that the science of PTLDS is advancing.

“What this study does is provide evidence that the brain fog in patients with post-treatment Lyme disease syndrome has a physiological basis and isn’t just psychosomatic or related to depression or anxiety,” says John Aucott, M.D., a senior author of the new paper, associate professor of medicine at the Johns Hopkins University School of Medicine, and director of the Johns Hopkins Lyme Disease Research Center.

So, after years of stating that they’re not crazy, that they’re not making this up for attention or otherwise, PTLDS patients finally have the evidence that supports their claims and although more studies are warranted, all good things have to start somewhere, right?

So, for those medical providers who didn’t believe me, I feel like shouting Tobey Keith’s song “How Do You Like Me Now?” and I feel like they owe me an explanation, no scratch that, they owe me an apology. Me and every other Lyme patient whom they’ve passed along through the system, who had continuing symptoms but were denied further medical treatment. Explain yourselves!

Remember that tsunami wave of change that I wrote about a few years ago? Well, its coming and its growing and it will not stop or slow down until all Lyme patients are treated with the respect and medical professionalism that all patients should receive and as a medical provider, if you are unable to give it, then you need to step aside and allow them to access the best possible care to regain their health and their life back. Just because you don’t believe doesn’t mean it isn’t real.

Sometimes it takes the right people to listen and to work tiredlesly on behalf of patients everywhere because it’s the right thing to do.

“There’s been literature suggesting that patients with PTLDS have some chronic inflammation somewhere, but until now we weren’t able to safely probe the brain itself to verify it,” says Jennifer Coughlin, M.D., associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine, and one of the first authors of the study report.

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org and visit her website www.mldse.org