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.

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

  • kees
    04/12/2023 (11:13 am)

    Hi There.

    I am treated for lyme, had the afzelli strain of bacteria who cause scin problems and less other bad symtoms like nerves, but it can do,

    I had a ACA on lower leg left, and get after tests and a skin biopt doxycyline for 30 days. Things get better the ACA is gone and have normal skin exept when heat or other stresses it does colouring.

    Now I am 5 months from antibiotics and I think it is coming back, the ACA is still gone but have some muscle pain who feels like I have done sport, it is not bad and I am not sick, no fever and normal heart action, I do bycicle a lot, tyreness is still be with me, special because it is spring I have always tireness, soms quite severe.

    I have a reash on the frond head an a couloring on nose, bayve a new ACA there?.

    I do not be on hospital doctor specialised in lyme, I have no bad symtoms, I am active. I have also no bad nerve problems, I do feel some things but very very mild and can be of other reasons. I am diagnosted with biogene aminen, who can be cause, I did read together with lyme it can turn problematic.

    It is time to do research, this bacteria is quite dangerous, not deadly but people get out of running.

  • 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!!!!

1 2

Join the Lyme Conversation
(Note: comments are moderated. You will see your comment after it has been reviewed.)

Some html is OK