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).

 

by Daniel J. Cameron, MD, MPH

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.”

Nearly 60% of patients with post-treatment #Lyme disease syndrome had a delay in diagnosis or initial misdiagnosis. Click To Tweet

“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:

  1. 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.
  2. 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.
  3. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
  4. Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.


15 Replies to "Post-treatment Lyme disease syndrome is a serious problem"

  • Deborah Pagnotta
    02/08/2018 (11:24 am)
    Reply

    The Rebman study should add great weight and further credibility to the appropriate diagnosis and treatment of PTLDS. The study stands on the shoulders of giants, the scientists and healthcare providers who steadfastly truly listened to their patients. No, the earth is not flat, you agreed, and helped us navigate a path to health. The Rehman article should be sent to all healthcare insurance carriers, and every neurologist and infectious disease specialist and primary care physician.

  • Mark Dickstein
    02/08/2018 (9:55 pm)
    Reply

    while I am pleased with the conclusions….in the Lyme community this has been the conventional wisdom for 5+ years, and it concerns me as to how slowly the traditional scientists r responding to the Lyme pandemic

  • Barbara Cormack
    02/18/2018 (4:02 pm)
    Reply

    This great news now I can tell my doctors that my aches and pains are not because I am getting old. I am still sick. When I talk to people I tell them I still have lyme and will live with it the rest of my life. My life dream is to wake up and have the energy to get through the day. Its not happening.

  • Debbie Carter
    03/01/2018 (1:03 pm)
    Reply

    So sad that we can’t make headway and are being obstructed at every turn. A relative was in front of congress with Ted Kennedy in the 70″s(I read the transcript) and we’re still fighting for recognition of chronic lyme?????

  • Charles Sangston
    03/03/2018 (3:03 am)
    Reply

    https://www.sciencedaily.com/releases/2017/12/171213143613.htm

    This is not good.

    Chronic infection almost certainly the case in 90%+.

    The protocol is ineffective.

    Spirochetosis is suspected as a cause of neurologic dysfunction.

    Etc.

  • Kevin
    04/06/2018 (6:59 pm)
    Reply

    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)
      Reply

      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.

  • Glenn Askedall
    05/15/2018 (3:31 pm)
    Reply

    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)
      Reply

      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.

  • Karen Jameson
    06/27/2018 (11:17 am)
    Reply

    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)
      Reply

      I am sorry to hear your son is having so many issues. You are asking the right questions.

  • Vinnie
    08/01/2018 (6:21 pm)
    Reply

    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.


Got something to say?

Some html is OK