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

Researchers at John Hopkins describe the risk of pain and fatigue after three weeks of treatment with doxycycline for an erythema migrans rash. According to the article published in Archives of Clinical Neuropsychology, 23 of 107 patients (21%) had a high fatigue total score and 33 of 107 patients (31%) had a high pain score. Only 5 of 107 patients (5%) had a high depression total score.

 

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:

  1. 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.


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Jen Cousins
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Jen Cousins

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?

George
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George

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.

Mary
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Mary

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… Read more »

Colleen
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Colleen

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?

Robin Barnett
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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

Patricia Hetrick
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Patricia Hetrick

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.… Read more »

Tracie, R.N.
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Tracie, R.N.

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?

Joanna
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Joanna

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.

Mary Ann
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Mary Ann

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.