What are the symptoms of Post-treatment Lyme disease syndrome?
Doctors have known for years that they cannot rely on a physical exam to diagnose early Lyme disease unless they find an erythema migrans rash, Bell’s palsy, or heart block. Now, Rebman and colleagues from the Johns Hopkins University School of Medicine acknowledge that doctors also cannot count on a physical exam to diagnose Post-treatment Lyme disease syndrome (PTLDS). [1]
In their article published in the journal Frontiers in Medicine, the authors state, “Results from the physical exam and laboratory testing our sample of patients with PTLDS did not show a pattern of significant objective abnormalities.” However, “the most notable exception was the higher rate of diminished vibratory sensation on physical exam among participants with PTLDS.”
Following treatment for Lyme disease, it is uncommon to find “objective clinical manifestations” in patients with PTLDS, according to the researchers. In fact, “a much more likely scenario after treatment is the persistence or development of subjective symptoms without any residual or new objective manifestation.”
But the authors did discover a collection of symptoms among the Lyme disease patients which, when looked at as a whole, indicated the presence of problems post-treatment. For example, “Although only found in a small subset of our sample (3.4%), two participants met criteria for postural orthostatic tachycardia syndrome, an autonomic condition that has been previously reported following Lyme disease.”
Meanwhile, nearly 32% of the PTLDS patients reported having “severe sleep difficulty,” 5% had “severe visual clarity issues” and 8.3% experienced photophobia.
In fact, researchers identified 19 diverse symptoms which they considered diagnostically and clinically relevant. Out of the 19 symptoms, 9 were especially significant and included fatigue, joint pain, focusing/concentration, muscle pain, memory, finding words, sleep, neck pain, and irritability.
The findings of severe fatigue, pain and cognitive complaints should not be surprising given that at least one of these symptoms was necessary to meet the Infectious Diseases Society of America’s (IDSA) criteria for Post-treatment Lyme disease syndrome. [2]
What is surprising is that no one in the control group had severe fatigue, pain or cognitive complaints. But 50% of PTLDS patients reported severe fatigue, 28.3% reported pain and 23.3% had cognitive complaints.
[bctt tweet=”50% of patients with Post-treatment Lyme disease syndrome have severe fatigue. ” username=”DrDanielCameron”]The remaining symptoms of PTLDS were paresthesias (tingling sensations), low back pain, headache, photophobia, dizziness, visual clarity, chills, coordination, sweats, fasciculations (muscle twitches), breathing difficulties, urination changes, and nausea.
This study supports what many Lyme treating doctors have found in their practices: patients who are treated for Lyme disease can suffer from a range of chronic, persistent and sometimes debilitating symptoms.
Related Articles:
Children in the Netherlands remain ill with Post-treatment Lyme borreliosis syndrome
Doctors say you are cured but you still feel the pain
Fatigue can be overlooked as a “sign” of Lyme disease
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.
Matthew Young
09/18/2019 (3:04 am)
Hi, I’ve been recently diagnosed with Lyme disease, but my muscles are very weak and I am still very tired, two weeks after finishing my 3 week course of antibiotics. Even though I tested positive for Lyme, I am very concerned about something more serious ALS. I had an MRI, which came back normal. I have muscle weakness, twitches, fatigue, tremors, bladder problems, brain fog, and depression. I am seeking help, because my doctor has been dragging his feet and I just need answers, so I can calm down. I already have pretty bad anxiety and I just want to make sure everything is okay, because I’m very concerned that I have ALS. Do you think it’s just the post treatment Lyme or do you think it’s something more serious? Thanks
Dr. Daniel Cameron
09/18/2019 (11:56 am)
I typically recommend working with both a neurologist and doctor experienced in treating Lyme disease. I have treated Lyme disease patients longer than 3 weeks or change antibiotics.
ZK
08/30/2019 (4:52 pm)
I have been experiencing fatigue for about a year and all blood tests were fine. This June I felt arthritis like pain, and did another blood work for Lyme which came back negative (<90). The pain in my joints became unbearable and I went to a rheumatologist, she tested me for Lyme and I have 4 positive IGG bands. She said she can’t really say it’s lime, but due to my simptoms gave me Doxy for 21 days (I’m now on day 9). Another test from StonyBrook came back indetermined with now 1 IGM showing as well. I’m so worried.
I have pain in my joints and twitching on my lip, and sometimes in my tongue (very mild), also twitching in my legs and arms. They come and go.
A year and a half ago, when I had serious eye twitching and headaches and was extremely fatigued and had panic attack’s, so had an MRI done and it came back normal.
I’m so confused at what’s happening. Dr. Google scared me when I read about MS, but I had an MRI done 1.5 years ago…
I’m in my early 40’’s, and don’t even recall being bit by a tic, though there are a lot of deer where I live.
I don’t know if it’s Lyme or not, as I only showed 4 positive bands, but I’m loosing my mind trying to figure out what’s wrong with me. Cardiologist said I’m fine (went due to palpitations and afib episode), GI did endoscopy said all good.
Please help! Can Lyme cause these pains and most importantly twitching in lip, cheeks and periodic spikes in tongue? Thank you! I hope you will respond.
Dr. Daniel Cameron
08/30/2019 (10:24 pm)
I typically would include a new neurologic evaluation. I would look a second time at Lyme disease if symptoms persist. Doctors are divided on how to approach Lyme disease.
J Hedou
06/15/2019 (1:07 am)
An acupuncturist found a tick on my knee about a year ago (May 2018). My GP refused to test or give me the 1 day doxycycline so I went to the ER. I had no rash, tick was latched on but notvengoged. Left a scab thatvstayed on for 6 months. I have had a progressively worse problem with fatigue, bladder infections, and now muscle cramps and NECK PAin.My doctor did test for two strains eventually but no one seems to take me seriously. I’m in Maine. People say Buck it Up all the time but it’s hard to work when this tired. Any suggestions on how to get taken seriously?
Dr. Daniel Cameron
06/15/2019 (10:49 am)
Doctors demonstrated that a single 200 mg dose of doxycycline could reduce the risk of a rash. The study was stopped after 5 weeks. The study did not address whether a single 200 mg of doxycycline would prevent other problems with Lyme disease. The single dose of doxycycline may prevent a positive test. I advise my patients against a single 200 mg dose of doxycycline. I advise a second opinion to review your treatment options. I would also make sure there is not another illness.
Jennifer Buttram
06/12/2019 (6:41 pm)
I was diagnosed about 4 uears ago because I was experiencing muscle and joint pain. My Dr. happened to do the blood test giving me a positive result. I tried a 2wk does of dox that didnt work. Then he gave me another kind that made me sick so I couldn’t take it. So I just hoped it went away. Nope! I have no clue when I was bit by a tick. This maybe why it didnt work. I have know idea how long I could have this. I had him do a blood test a year later and it still came back positive. I go through stages when my hands hurt so bad. The fatty part of my thumb/palm is the worst. I have gone to an orthopedic she did test sent me to therapy. I had special braces made. Nothing worked. She said she can’t tell me what’s wrong just arthritis, but that shouldn’t be causing so much pain and set me on my way. Same thing with my back. I have always had depression, anxiety, and mood issues so it’s hard to tell if it is a factor. I have a horrible time sleeping. Diagnosed insomnia and taking meds with some help. Getting out of bed hurts everday and takes a minute to straighten out and move. I have been diagnosed with fibromyalgia. How ever I can tell I have points where I have alot more pain, lower energy than normal, more moody, and sleep worse. I feel like I have times when my PTLDS affects me then it goes into remission. It’s like a cycle.
Dr. Daniel Cameron
06/12/2019 (11:21 pm)
Your story reflects the difficulty determining the correct diagnosis and treatment. I typically have various consultants weigh in.
Bigpigeon
05/07/2019 (9:23 am)
I was infected 9 months ago but was not Lyme free until 5 months later and have made very slow progress each week with what I can do. I’ve had none of my original symptoms since then and I feel “well” except for severe fatigue and annoying memory issues and neck muscle problems (through bad posture). I am certain I am not still infected but experiencing after effects of inflammation. I feel like I will never shake this off and am becoming despondent. Am I likely to always have these problems. I can find scant info on less severe forms of PTLDS.
Dr. Daniel Cameron
05/08/2019 (12:25 am)
There is little information on less severe forms. You may benefit from a second look at tick-borne infections. You should also be sure there is no other illness.