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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.
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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.
It can be so difficult.
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.
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?
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.
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
It could be just the chemical and physical reaction to the tick bite rather than an infection.
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?
Pain and fatigue persisted despite having prescribed 3 weeks of antibiotics. A persistent infection is one of the considerations.
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.
I am glad your son has done well despite the treatment delays. I favor daily antibiotics if treatment becomes necessary.
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.
i find doxycycline for acne can interfere with the tests and prevents some of the finding e.g., a rash.
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?
There are sites that suggest names if needed e.g., LymeDisese.org or ILADS
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?
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.
My mate recently finished a 21 day treatment of doxycycline for a lyme disease diagnosis. This morning was his last dose. He developed the EM rash 6, possibly 8 weeks before going to the doctor. He has pain in his back that seems to move around a bit. It’s intermittent and he can’t actually desribe what it feels like. He has terrible anxiety, so much that he went to the er this weekend because he was convinced there was a tumor growing in his body. A ct scan didn’t present anything of the like. He remains in a constant state of Malaise.
I look for other causes during and after treatment. I also typically use other antibiotic treatment regimen if the symptoms remain.
I had lymes disease as a toddler. I was never treated for it.
I am now 21 years old. I experienced hair thinning/ loss, fever, neck pain on the left side, and extreme fatigue. I went to my doctor and she told me I had a new infection of Lymes Disease. I took Doxy twice a day for 3 weeks straight. It is now 2 months post-treatment, I am back to feeling extremely fatigued, my hair is still falling out, and the pain on the left side of my neck still persists. Do you advise further treatment?
I have patients who benefit from treatment. Some doctors disagree. Only one of three NIH sponsored Lyme disease trials showed benefits of retreatment. I have seen patients with a new infection who also had an unresolved previous infection.