Case report: Persistent pain and fatigue after treatment for Lyme disease

“A previously healthy 48-year-old woman living in rural Maryland presented in early June with a 2-week history of neck pain, fatigue, anorexia, nausea, and intermittent fevers and chills,” states Novak from the Division of Rheumatology at Johns Hopkins University School of Medicine.


The patient was concerned she might have Lyme disease because she had repeated exposure to ticks and had reported tick bites in the past. However, “She did not recall a tick bite in the weeks preceding the onset of her illness,” Novak writes in Case Reports in Infectious Diseases. [1]

Therefore, the primary care doctor made a tentative diagnosis of a viral illness, possibly mononucleosis. But the patient’s condition worsened. “She presented to the emergency room the following day with worsening neck pain, stiffness, and myalgia and was admitted for dehydration and further evaluation,” states Novak.

The 48-year-old woman had a pulse rate of 31 beats per minute and a new onset second-degree AV block with 2:1 conduction.

In addition to having a temperature of 101.1°F and a pulse rate of 101 beats per minute, the woman exhibited a new oval nonpainful red rash on her left hip which was attributed to a drug reaction. “The serologic evaluation was interpreted as consistent with either late primary infection or reactivation of mononucleosis with a (+) IgG antibody, (− ) IgM, and (+) EBNA,” she states.

The patient remained ill. “Over the next 4 weeks, she had waxing and waning symptoms of fever, fatigue, arthralgia, and anorexia,” explains Novak. In addition, she developed a difficulty in finding words and had trouble concentrating, particularly with reading.

The rash expanded and she was treated with Keflex. “The original skin lesion on her hip enlarged, and new skin lesions appeared on her left lower leg and stomach,” writes Novak. “The rash did not respond to the antibiotics but eventually resolved over a period of weeks.”

Six weeks after the initial evaluation, the woman was readmitted suffering from an “increasing exertional dyspnea when climbing stairs, anxiety, and chest heaviness,” Novak states. She presented with a pulse rate of 31 beats per minute with a new onset second-degree AV block with 2:1 conduction.

The patient was diagnosed and treated for Lyme disease based, in part, on the new onset heart block and a positive Lyme ELISA (3 of 3 IgM bands) (8 of 10 IgG bands). The AV block resolved within 3 days with intravenous ceftriaxone, and the patient was discharged with a 3-week course of doxycycline.

Despite antibiotic treatment, the patient remained ill:

  1. “She remained fatigued and had increasing problems with insomnia.”
  2. “There was also ongoing trouble with word finding, focusing, and concentrating.”
  3. “She developed new symptoms of bursitis in hips, coldness in hands, shooting pains in arms, and numbness in hands and feet.”
  4. “She stated that she ‘feels like a 90-year-old woman’ with hip and knee pain and remained out of work from July to September.”

The patient was diagnosed with Posttreatment Lyme disease syndrome (PTLDS). The Infectious Diseases Society of America’s (IDSA) definition of PTLDS proposes “that the symptoms should be of significant severity such that they impact daily functioning,” explains Novak. [2]

“Our patient’s manifestations have persisted for over 18 months, which is consistent with other reports of chronic symptoms lasting over a decade, especially in patients with disseminated infection and a delay in initial antibiotic therapy,” Novak states.

Although the patient remains ill, her Lyme carditis has resolved and she is working full time. According to Novak, “[She] continues to report her pain and fatigue levels as a 4/10, which she rates as mildly disrupting her work, social, and family life.”

The authors did not mention whether the patient was informed that there are doctors who remain concerned that persistent infection or co-infections might explain the ongoing symptoms. [3]


Related Articles:

Persister cells still a problem for Lyme disease patients

‘Doctor says you are cured, but you still feel the pain’ 

Could dormancy allow Lyme disease to survive antibiotics? 


  1. Novak C, Harrison A, Aucott J. Early Disseminated Lyme Disease with Carditis Complicated by Posttreatment Lyme Disease Syndrome. Case Rep Infect Dis. 2017;2017:5847156.
  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. Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014:1-33.

12 Replies to "Case report: Persistent pain and fatigue after treatment for Lyme disease"

  • tommy ann steinsiek
    01/13/2020 (4:16 pm)

    Dr. Cameron, I am a 66 yr old female living my entire life in Ok. and Ark. (Ozark Mts.). Being a country girl, and working in wildlife rehabilitation, ticks have been a daily part of my life…all of my life. Perfect health and highly productive until age 50, at on- set of “mysterious” illness. (ie: after a normal day, felt beyond exhaustion at bedtime, thinking I should take a few days off) . Woke at 4am with 104 temp, hugely swollen neck glands and over all body pain. Immediate trip to E.R. That began my journey (June 2002). Then in Aug. 2017 after 4 states, numerous docs and specialists, much uncalled for humiliation from medical community, (I.D. docs would not even allow me an appt.), I finally found a T.B.D. Specialist in Missouri. I was elated to FINALLY have a diagnosis….”Chronic Late Stage Lyme Disease with multiple co-infections. My hopes were quickly dashed when I then discovered the “government-political-insurance companies monetary cover-up issues with a federal court case pending in Texarkana, Tx. (June, 2019)..and much to my horror realized that a “cure” for me was not in my future. I now live at home with palliative care assistance. I suffer greatly daily and continue to fight this disease the only way I know how…..AWARENESS!..I will tell anyone who will listen, pass out printed info on everything from the history of “Plum Island” to today’s most current advances. Of course, my own personal journey was motivation enough but when I read and researched that our children…our babies are now being diagnosed with this wretched disease…I could not do nothing…so awareness it is! Thank you for your dedication and out pouring of researched info. I have often said, as a person who has unwillingly incubated this deadly disease for almost 18 yrs now, some medical entity, research team,..etc. should be able to glean massive amounts of info from my live body, still struggling to survive but can find no takers! ha! Thank God I still have my since of humor. I am open for unleashing every iota of info I personally have. I remain available….respectively, Itski. God bless all the courageous professionals and sufferers on the front lines of this battle….Let’s win the war!!!!

    • Dr. Daniel Cameron
      01/13/2020 (4:30 pm)

      I appreciate your courage.

  • El
    05/12/2019 (7:30 pm)

    Is it possible for Lyme or coinfections to cause degeneration of the spine, such as Mild Spondylosis, bulging disc covers, narrowing of spine, and fluid leakage? My teen has had this per MRI, and has all signs of arthritic Lyme and possibly Bartonella or coinfection (stiff neck, muscle weakness and pain, severe spine pain top to bottom, joint pain and knee ankle toe swelling, had flulike sx and ear infection initially, but toe swelling and foot pain right side preceded all of this). He is: negative flu, strept, blood cultures and also normal MRI brain. No spinal tap done. Negative iGg Lyme (inaccurate type of lab used).

    Wouldn’t we know after 3 most if this had been Meningitis (fungal even)? I hate to get spinal tap since fevers are gone for month already, but don’t know how to play it safe, yet am keeping Lyme as great imitator front and center.

    Any thoughts? Sorry such long post. He needs cane all the time, or wheelchair or bed. Not even 16 yrs old. Spine Dr, neuro and Rheum dismissed as Fibromyalgia, which I know alot about, and it’s different than that.

    • Dr. Daniel Cameron
      05/14/2019 (11:27 am)

      It is common to come up with a list of findings. It is not always clear that they all add up to one problem. You should include Lyme disease in your evaluation. Note: the spinal tap is often not helpful in chronic neurologic manifestation of Lyme disease.

  • Marci
    07/25/2018 (1:26 pm)

    My sister was continues to suffer with fatigue, headaches, chronic pain, spastic gait and a strange constant mouth sucking after Lyme Disease and all the co infections that go along with it. She has been dealing with this for over 27 years even with antibiotic and holistic treatments. I was just wondering if you have heard of other people who exhibit constant, loud mouth sucking behavior as a result of these diseases?

    • Dr. Daniel Cameron
      07/25/2018 (1:56 pm)

      I have not run into the problem. I typically include other specialists e.g. neurologist and ENT to rule out other issues.

  • Jackie
    01/27/2018 (6:12 pm)

    I am post treatment going on 2 years. I still have pain, “flare-ups”, etc. The big question is…are there still active Lyme bacteria or is it damage from the Lyme? I know it’s a chasing your tail kind of thing but for piece of mind as well as treatment options can be confusing. I have been living within the limits and restrictions…again (just not as severe). Thank you, Dr Cameron for saving my life!!! I guess I just want to be back to 100%.

    • Dr. Daniel Cameron
      01/28/2018 (10:22 am)

      I am happy to hear to have improved. Keep your goal of 100% alive.

  • Dee Evans
    01/27/2018 (2:01 pm)

    I’ve had Lyme, Tularemia, Brucella, Bartonella & Babesia for 4 years, and I’ve been on several antibiotics during that time. Currently, I only have Lyme + Babesia. My Lyme provider feels that I will recover from the Babesia within several months. I’m taking Atovaquone for this. Do you agree?

    • Dr. Daniel Cameron
      01/27/2018 (3:54 pm)

      Doctors are divided on treatment approaches. I find atavaquone helpful for my more complicated patients.

  • AJ
    01/26/2018 (5:11 pm)

    this happened to me – and the pain was so severe i could not walk or stand.
    this continued for over 2 years – i am immune compromised with no igg, iga, or igm and doctors insisted on going by test results which i am so immune compromised from chemo that my immune system can not respond to these tests
    after being on and off antibiotics i finally went on Ceftin with Benadryl since I had a severe allergic reaction to the medicine but I can now walk without pain for the first time in over 2 years
    you have to keep treating the underlying infections aggressively with antibiotics and keep trying different ones until you find one that works
    good luck

    • Dr. Daniel Cameron
      01/26/2018 (8:14 pm)

      I am happy your persistence paid off.

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