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”

Robin Barnett

06/03/2017

Dr. Cameron
5 weeks after bite, I still have a tiny raised scab surrounded by red skin. Thinking of seeing my dermatologist who might excise it completely. Your thoughts? Thanks, Robin

Reply
1. Dr. Daniel Cameron
  
  06/05/2017
  
  It could be just the chemical and physical reaction to the tick bite rather than an infection.
  
  Reply
Patricia Hetrick

05/12/2017

I am not getting that this proves that the pain and fatigue were caused by the ABX and not the infection unless the patients studied had zero fatigue, pain and depression at the initiation of the ABX treatment. I continued to decline after the 3 weeks of ABX until I found a Lyme doc who prescribed a combination of ABX that was appropriate. It took 4.5 YEARS of treatment before the symptoms that had all presented BEFORE ABX treatment began to resolve. Yes this is hard but denying treatment with multiple antibiotics for those who can handle it is criminal. In response to Mary Ann above, your Lyme must not have been close to what I was dealing with. It would have killed me and I was willing to try any treatment that had a chance of saving my life.

Reply
Tracie, R.N.

05/12/2017

By the IDSA definition, a diagnosis of PTLDS is conferred after objective resolution of the initial Lyme disease infection, whether it was caught early or late. If LD symptoms never fully resolve, or wax and wane without complete resolution, despite active treatment for a period of many months or years, what is the the term for this clinical picture?

Reply
1. Dr. Daniel Cameron
  
  05/12/2017
  
  It has not been defined
  
  Reply
  1. Dr. Daniel Cameron
    
    05/14/2017
    
    The Hopkins authors results confirmed what many of us know in practice, that there are patients with severe fatigue and pain using standardized measured despite 3 weeks of treatment. These studies confirm the obvious.
    
    Reply
Joanna

05/12/2017

I was on doxy then biaxin for a total of about 15 months. I still have fatigue and some other symptoms. Is this a permanent side effect or should I be looking into further treatment? I do take supplements and Chinese herbs for symptoms.

Reply
1. Dr. Daniel Cameron
  
  05/12/2017
  
  Your treatment would not address Babesia. It is also important to rule out other illnesses.
  
  Reply
  1. Dr. Daniel Cameron
    
    05/14/2017
    
    I agree with your concern.
    
    Reply
Mary Ann

05/11/2017

After 3 months on abx for borreliosis the pain and fatigue have never gone away. It’s been 5 years so far. I also thought I was going to die from the abx treatment. It was worse than the Lyme.

Reply
1. Dr. Daniel Cameron
  
  05/11/2017
  
  It can be so difficult.
  
  Reply