The risk of pain and fatigue after three weeks of Lyme disease treatment

May 11, 2017

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by Daniel J. Cameron, MD MPH

The cut-offs for fatigue and pain were chosen to reflect clinically significant levels of that symptom based on the literature. A cut-off of 36 or greater was chosen for the Fatigue Severity Score (FSS) to indicate “high fatigue symptoms.” A score of greater than 3 was chosen for the McGill Pain Scale to indicate “high pain symptoms.” A total score of 13 or greater was chosen for the Beck Depression Inventory as indicating clinically significant symptoms of depression.

There were a substantial number of patients with a high level of symptoms immediately after completion of the three weeks of doxycycline. “Thus by the end of standard antibiotic treatment (Visit 2), those with high (clinically significant) symptoms of fatigue, pain, or depression continue to have impact on life functioning up to 6 months later,” according to Bechtold from the Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine.

The researchers identified 6 individuals that suffered from Post-Treatment Lyme Disease Syndrome (PTLDS). The authors used the IDSA case definition of PTLDS as follows:

“a documented episode of early or late LD with post-treatment resolution of objective signs of LD, but continuation or subsequent onset of symptoms of fatigue, widespread musculoskeletal pain, and/or complaints of cognitive difficulties. These subjective symptoms must be continuous or relapsing for at least 6 months following completion of treatment and must be severe enough to reduce the patient’s functional ability.”

The remaining patients with severe fatigue and pain did not meet the PTLDS criteria. It would appear that studies of PTLDS clearly underestimate the morbidity associated with Lyme disease.

More: International Lyme and Associated Diseases Society Treatment Guidelines, 2014.

References:

Bechtold KT, Rebman AW, Crowder LA, Johnson-Greene D, Aucott JN. Standardized Symptom Measurement of Individuals with Early Lyme Disease Over Time. Arch Clin Neuropsychol. 2017;32(2):129-141.

Comments

25 responses to “The risk of pain and fatigue after three weeks of Lyme disease treatment”

Jean Laraway

08/12/2020

I developed the EM rash on my back. It grew to over 12″ before I was given Doxycycline. I took the Doxy for 3 weeks 2ce a day. The day after I stopped taking it, my spine began to hurt. I would say about 10 of my vertebrae. What would this be an indication of?

Reply
1. Dr. Daniel Cameron
  
  08/12/2020
  
  I would encourage you to be evaluated by your doctor to look for evidence of a persistent infection or co-infection or look for another illness. Call my office at 914 666 4665 in Mt. Kisco, New York if you have any questions.
  
  Reply
Jen Cousins

07/26/2019

Was recently diagnosed with the erythema migrans rash above ankle. I did not know what it was and went to my podiatrist who has prescribed 6 weeks of doxycycline. The rash was the only indication. I don’t have exaggerated symptoms, mostly joint aches and fatigue. If I did progress to worse disease, I cannot expect my podiatrist to continue treating. My dermatologist and primary care physician do not treat Lyme or know really anything about it.
I live in Northern California. The local county vector office advised to find an infectious disease MD. Do you have any recommendations?

Reply
1. Dr. Daniel Cameron
  
  07/26/2019
  
  There are sites that suggest names if needed e.g., LymeDisese.org or ILADS
  
  Reply
George

06/22/2019

Hello!! I was on doxycycline for 1.5 month for acne. I stopped it because I had fatigue symptoms. I recovered(not full) after 25 days but after 20 days fatigue started again. I work and workout every day. Is this normal about doxycycline? Doctor said i damaged my gut but without any specific test. Just blood tests which showed nothing.
Thanks in advance.

Reply
1. Dr. Daniel Cameron
  
  06/24/2019
  
  i find doxycycline for acne can interfere with the tests and prevents some of the finding e.g., a rash.
  
  Reply
Mary

08/24/2018

My son was treated for Lyme disease when he was 10, in 1990 before much was known about the disease. He probably had had it for at least 2 years before we realized the relationship between the rash we had earlier seen and his present symptoms. Finding a doctor who was knowledgeable in Lyme Disease back then was difficult. We finally found a doctor who was willing to treat him and told us to keep him on antibiotics until they symptoms went away. We would stop at intervals and the symptoms would return so he would go back on antibiotic treatment again. He had to stay on antibiotics for 3 years before he could successfully go off without symptoms returning. He is now 38 years old and has never had a recurrence and is healthy in every way. I know that some of the spirochetes will go into hiding when confronted with the antibiotics and then come out in all their glory when antibiotics are stopped. Just a few weeks of antibiotic therapy is sometimes just not enough. I wonder if “pulse therapy” might be more effective.

Reply
1. Dr. Daniel Cameron
  
  08/24/2018
  
  I am glad your son has done well despite the treatment delays. I favor daily antibiotics if treatment becomes necessary.
  
  Reply
Colleen

06/24/2017

I agree with Patricia’s statement.
Is this saying the antibiotics caused the pain and fatigue?
If we didn’t have it before Treatment why would we have gone to a doctor?
Some of my first symptoms were just those, and the only drugs I had taken was lisprinerol.
So then it would be lisprinerol that caused my issues?

Reply
1. Dr. Daniel Cameron
  
  06/25/2017
  
  Pain and fatigue persisted despite having prescribed 3 weeks of antibiotics. A persistent infection is one of the considerations.
  
  Reply