Post-treatment Lyme disease syndrome is a serious problem
More than 300,000 people contract Lyme disease in the USA every year with many continuing to suffer from long-term illness. In some cases, those persistent symptoms have been dismissed by physicians as being psychosomatic, or caused by something other than Lyme disease. But now, researchers at the Johns Hopkins University School of Medicine acknowledge the existence of what is called Post-treatment Lyme Disease Syndrome (PTLDS).
According to Rebman and colleagues, writing in the journal Frontiers in Medicine, PTLDS is a severe complication of Lyme disease. [1] The authors identified PTLDS using the Infectious Diseases Society of America (IDSA) proposed case definition. [2] “Briefly, this definition relies on prior physician-documented Lyme disease, treatment with standard of care antibiotics, and the development of significant fatigue, widespread musculoskeletal pain, and/or cognitive difficulties that last for a period of at least 6 months, and began within 6 months of a Lyme diagnosis and recommended treatment,” explains Rebman.
Individuals with PTLDS represent a group of patients who have been evaluated for “unexplained fatigue, pain, and neurocognitive symptoms by primary care and sub-specialty physicians,” the authors state. These patients are “highly and clinically significantly symptomatic, with poor health-related quality of life.”
[bctt tweet=”Nearly 60% of patients with post-treatment #Lyme disease syndrome had a delay in diagnosis or initial misdiagnosis. ” username=”DrDanielCameron”]“PTLDS patients,” Rebman states, “exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls.”
Post-treatment Lyme disease syndrome can last for years, study finds.
According to the study findings, PTLDS can last for years. “Our cohort was a median of 3.6 years from onset of PTLDS symptoms to study enrollment, with a range of 8.3 months to 27.7 years,” states Rebman.
And, PTLDS can occur even in Lyme disease patients treated within 30 days of the onset of symptoms. “Time from illness onset to first recommended course of antibiotic treatment was a median of 30 days,” according to Rebman.
Additionally, 59% of the patients with PTLDS reported having a delay in diagnosis or an initial misdiagnosis. Risk factors for PTLDS include a delay in diagnosis and an increased severity of initial illness, including the presence of neurologic symptoms.
The authors did not address other manifestations including chronic neurologic Lyme disease [3] and neuropsychiatric Lyme disease. [4]
The Johns Hopkins study should put to rest the false narrative perpetuated by the 2006 IDSA treatment guidelines which states, “In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection.” [2]
Related Articles:
Case report: persistent pain and fatigue after treatment for Lyme disease
Johns Hopkins’ study supports early identification of Lyme disease patients for re-treatment
At least 50% of patients with Lyme neuroborreliosis remain ill years after treatment
References:
- Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
- 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.
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
- Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
Debra Galley
09/06/2022 (8:12 pm)
This is a much needed article. My 77year old husband had a Lymes disease diagnosis in mid June ‘’22. He is exhibiting really strange symptoms that I have suspected were related to his initial Lymes Disease. He is very lethargic, has chronic fatigue and lethargy, he struggles to understand many statements( brain fog?), displays no interest in activities he loves (gardening, hunting, fishing,etc). He has a poor quality of life at this point. I was thinking he was developing dementia. I plan to Pursue this with his PCP, but I do not believe they will accept my suggestion. Thank you.
Dr. Daniel Cameron
09/06/2022 (8:26 pm)
I hope it works out. All the best.
Jessica
06/15/2022 (3:37 pm)
I tested positive for Lyme at 3 years old and am now 24. My whole life I’ve been abnormally fatigued. I tire easily and suffer from depression and anxiety as well as memory problems, “fog” and body pains. Is it possible for this to still be causing me problems or should it have gone away by now.
Dr. Daniel Cameron
06/16/2022 (5:51 pm)
There are an increasing number of doctors who agree that 10 to 20% of individuals with Lyme disease remain ill for months to years. Doctors are divided on whether to treat. I am a member of a group that might consider re-treatment.
Susan
12/15/2021 (10:19 am)
Great to hear that my post symptoms are not crazy. They are real. Of course I pray we all can get a treatment soon.
I have spent so much time and money exploring treatments…Im spent emotionally and financially.
Thank you for sharing!
Jacqueline McIntosh
10/29/2021 (7:54 am)
Dr. Cameron, thank you so much for this information. I had Lyme Meningitis two years ago. I had horrible back pain for four days before being admitted into the hospital for eight days. I was also in quarantine due to another bacteria they found after the spinal tap. I was put on ceftriaxone for four weeks. My upper spine becomes painful and both arms will still go numb either after sleep or after doing work such as painting or lifting heavy objects. I’ve had many days of horrible fatigue, brain fog, poor concentration, low grade fever with the same painful location in my throat, beginning to see light colored objects in side view when nothing is there. A recent MRI showed scattered punctate foci of T2 signal hyperintensity within the periventricular and subcortical white matter. My GP wants to put me on statins, he doesn’t believe in chronic Lyme disease and won’t give me a referral for a 2nd opinion. I’ve had a very painful autoimmune disorder since I my mid teens; I’ll be 60 on 10/30. And I’ve had insomnia for 29 years now, which is just about the same time I developed chronic fatigue syndrome; which was no where near the fatigue I have now, and I’ve had strange rashes on my next for at least seven years, the same place it was when I had the meningitis. I’m in Central New York, where Lyme is an epidemic but is rarely talked about by doctors. Do you believe that Lyme can be in our body for many years before it can cause something as severe as Lyme Meningitis? Thank you.
Dr. Daniel Cameron
10/31/2021 (7:57 am)
Meningitis is typically seen in early disease. I have patients who have been reinfected.
Jacqueline
03/07/2022 (11:12 am)
Dr. Cameron ~ This is just an fyi; beginning on January 2 I began feeling dizzy, after one week the left side of my head began feeling heavy, slightly numb with vertigo; feeling as though I’m tipping to my left. My doctor requested an MRI and they believe it’s M.S. After watching a few videos by Alan B. MacDonald I have no doubt that I have the Lyme bacteria still in my spinal fluid. He had been able to show that many people with M.S. indeed do have the infection in their spinal fluid. We need many more doctors such as yourself to help those of us who find it’s up to us to educate doctors who refuse to look outside the box.
aj
09/11/2021 (12:17 am)
Hi 🙂 I was living in Germany and i was 7 years old when i got diagnosed with Lyme Disease. They couldn’t find a bite, i had no bullseye rash either, however there was two small bumps in my ear. Anyways, i developed bell’s palsy in the left side of my face and got taken to the hospital, the lymes disease affected my nervous system. i was on antibiotics for a long time, and had eye drops. My face still has parts which can’t function properly and i can’t wink with the left eye without my whole face moving . anyways i’m 18 now and i suffer with back pains and spasms quite often, but not sure if it’s for anxiety or not. i also get numbness in my legs / feet sometimes. I’ve suffered with insomnia quite a bit, all symptoms of Post Treatmeant LD, but i’m not sure if i can have it since it’s been 11 years. if anyone knows what i can do or what i can say to the doctors , i’d really appreciate it, sorry for rambling 🙂