Post-treatment Lyme disease syndrome is a serious problem
More than 300,000 people contract Lyme disease in the USA every year with many continuing to suffer from long-term illness. In some cases, those persistent symptoms have been dismissed by physicians as being psychosomatic, or caused by something other than Lyme disease. But now, researchers at the Johns Hopkins University School of Medicine acknowledge the existence of what is called Post-treatment Lyme Disease Syndrome (PTLDS).
According to Rebman and colleagues, writing in the journal Frontiers in Medicine, PTLDS is a severe complication of Lyme disease. [1] The authors identified PTLDS using the Infectious Diseases Society of America (IDSA) proposed case definition. [2] “Briefly, this definition relies on prior physician-documented Lyme disease, treatment with standard of care antibiotics, and the development of significant fatigue, widespread musculoskeletal pain, and/or cognitive difficulties that last for a period of at least 6 months, and began within 6 months of a Lyme diagnosis and recommended treatment,” explains Rebman.
Individuals with PTLDS represent a group of patients who have been evaluated for “unexplained fatigue, pain, and neurocognitive symptoms by primary care and sub-specialty physicians,” the authors state. These patients are “highly and clinically significantly symptomatic, with poor health-related quality of life.”
[bctt tweet=”Nearly 60% of patients with post-treatment #Lyme disease syndrome had a delay in diagnosis or initial misdiagnosis. ” username=”DrDanielCameron”]“PTLDS patients,” Rebman states, “exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls.”
Post-treatment Lyme disease syndrome can last for years, study finds.
According to the study findings, PTLDS can last for years. “Our cohort was a median of 3.6 years from onset of PTLDS symptoms to study enrollment, with a range of 8.3 months to 27.7 years,” states Rebman.
And, PTLDS can occur even in Lyme disease patients treated within 30 days of the onset of symptoms. “Time from illness onset to first recommended course of antibiotic treatment was a median of 30 days,” according to Rebman.
Additionally, 59% of the patients with PTLDS reported having a delay in diagnosis or an initial misdiagnosis. Risk factors for PTLDS include a delay in diagnosis and an increased severity of initial illness, including the presence of neurologic symptoms.
The authors did not address other manifestations including chronic neurologic Lyme disease [3] and neuropsychiatric Lyme disease. [4]
The Johns Hopkins study should put to rest the false narrative perpetuated by the 2006 IDSA treatment guidelines which states, “In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection.” [2]
Related Articles:
Case report: persistent pain and fatigue after treatment for Lyme disease
Johns Hopkins’ study supports early identification of Lyme disease patients for re-treatment
At least 50% of patients with Lyme neuroborreliosis remain ill years after treatment
References:
- Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
- Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
- Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
Nannete Scheuch
05/10/2020 (11:08 am)
I was recently diagnosed with post-Lyme disease syndrome after suffering from all the classic symptoms for 10 days (April 2020) that came on acutely and were not subsiding. I specifically requested that I be tested for Lyme, which seemed odd to my PCP because I am currently NOT in at my primary residence in PA. I’ve been in NC since Dec 2019. After other blood tests came back “normal,” the Lyme test came back positive for IgG, indicating a past infection. I was surprised by this since, although most of my family and friends had been treated fro Lyme, I never pulled a tick off myself, nor had I recalled ever experiencing the symptoms of Lyme infection. I was told that I have post-Lyme disease syndrome and that even though my immune system successfully destroyed the spirochete, my own antibodies triggered an “immune response” and caused my debilitating symptoms. I was told that there is no treatment since I no longer had the bacteria in my system (logical) but that the syndrome would have to run its course and may appear again in the future, although I would NOT get reinfected. I’m concerned about two things. 1. Why can’t I become reinfected by another tick bite? Can this syndrome be transient and return in the future?
Thank you,
NS
Dr. Daniel Cameron
05/10/2020 (11:22 am)
You are asking the right questions. Call my office at 914 666 4665 if you have any questions.
Vinnie
08/01/2018 (6:21 pm)
Mis-diagnosed for 3-4 years. Finally $2000 worth of blood screening determined it was lyme all along. Over the past year have done 4 separate ab’s (three were doxy) and am taking high doses of neurontin. I feel worse now than ever. Mowing the yard (which I used to enjoy), wipes me out for the rest of the day. Might try cbd. Anyway, the problem I’ve run into, is that lyme in this country, while affecting many, is somewhat geographically isolated. I live in the south, and have had numerous people in the medical field here blatantly tell me that, because it’s rare in the south, why put any resources towards it at all? What I’m saying that there seems to be more than a few in the field that don’t do anything about it because it’s not in their best interest.
Karen Jameson
06/27/2018 (11:17 am)
My super athletic and healthy 23 year old son was hospitalized for 4 days with what finally turned out to be Lyme . Fever, “ worst headache of his life”, vomiting profusely at night only , and then facial palsy. Spinal tap showed ICP of 34. 3 weeks of doxy and acetazolamide and he was the same ( no fever or vomiting but head pain and the joint pain was now everywhere, and recurring facial palsy). No follow up for 6 weeks with Neuro , they “ just couldn’t get him in”. A friend called in a favor to chief of neurology, who saw him yesterday and today he is seeing a Lyme specialist . This whole ordeal has been so frustrating !! One neurology resident told me he couldn’t have Lyme because “ 100% of Lyme cases have the bulls eye rash and he didn’t”! I’m an RN, as is my husband. I am dead serious that is what he said! Another Neuro resident told me he had idiopathic intercranial hypertension until I reminded her of the fever, joint pain and weird rashes popping up all over his body. I’m so frustrated by the lack of knowledge of Lyme among neurology ( who insists they get to follow him due to Elevated ICP). And I’m frustrated that nearly 5 weeks in we are just hearing that our hospital has a Lyme specialist. We live in New Hampshire and have a ton of Lyme cases, how can the medical profession be this ignorant??!
Dr. Daniel Cameron
06/27/2018 (9:00 pm)
I am sorry to hear your son is having so many issues. You are asking the right questions.
Glenn Askedall
05/15/2018 (3:31 pm)
I am sick since October 17 or 18 1992. Misdiagnosed for four years. Put on high doses of IV steroids for Chrohn’s disease that was wrongly diagnosed. My neurological symptoms got 100X worse with those steroids and I feel that has ruined my life! I feel like lyme is still alive in me even though I just had lyme culture test come back negative. Neck cracking and headache so bad today can’t drive.
Can’t tolerate light or loud sound. On couch again this beautiful day. Not sure what or where to go. Don’t know how much more of this I can take. Thank you
Dr. Daniel Cameron
05/16/2018 (8:40 pm)
It is frustrating when the laboratory tests for Lyme and tick borne illnesses are not as reliable as we would like. It is always difficult to know whether to treat if you have to rely on clinical judgement. You also have to make sure another illness does not play a role.
Kevin
04/06/2018 (6:59 pm)
I was misdiagnosed for 5.5 years and treated for approximately 1.5 years with both oral and IV antibiotics. Still, I experience crippling full body arthritis that is confirmed not to be any of the myriad standard types of arthritis (rheumatoid, etc.). While reassuring that the medical community is finally validating what so many of us believe to be true, that the continuing symptoms are horrid and actually exist, there is far too little discussion on what can be done about it. Whether chronic illness or some seemingly inexplicable secondary autoimmune disorder, patients don’t really care what it is as long as it’s treated and relief is given. What are we supposed to do about these ongoing symptoms?
Dr. Daniel Cameron
04/06/2018 (11:49 pm)
The post-treatment Lyme disease syndrome cases in the Hopkins study were typically treated with 3 weeks of doxycycline at the time of an erythema migrans rash. Persistent infection is one of the proposed mechanisms. Your story highlights the more complicated problem of whether a persistent infection might remain. For example, was treatment for Babesia considered? Of course, it important to rule out other illnsses.