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.

50% of patients with Post-treatment Lyme disease syndrome have severe fatigue. Click To Tweet

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:

  1. 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.
  2. 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.


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Andrew Brownlee
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Andrew Brownlee

Hello my mom has been diagnosed with Lyme a year or two ago and right now she’s having bad muscle spasms and pain in her arm. She says it feels like her arm is being ripped off and she’s screaming and crying. We are confused on why this pain is happening. She hasn’t lifted anything heavy the last week and she sits down and rests and it continues to hurt every couple of hours for at least 30 minutes at a time. What should we do?

Julie Gregg
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Julie Gregg

Go see Dr Charles Crist, Ashland Mo

Matthew Young
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Matthew Young

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… Read more »

ZK
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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.… Read more »

J Hedou
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J Hedou

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… Read more »

Jennifer Buttram
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Jennifer Buttram

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… Read more »

Bigpigeon
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Bigpigeon

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… Read more »

SB
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SB

Hi Dr Cameron! I was diagnosed in dec of 2013 and was in and out of treatment until I was able to find a proper llmd close enough to treat me for lyme, babs and bart. I have been in so called remission for about 2 years now. I came across this article bc I was looking for a correlation between lyme (or post lyme treatment) and possible depression. My biggest complaint is fatigue (lack of energy) and some sleep issues. I get occasional joint pain but nothing like before. I guess my question is, what are your thoughts on… Read more »

SD
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SD

I had a tick bite on my stomach in the spring of 2017. There was a rash (but, not a “bulls eyes” pattern) and extreme itching. I noticed some light-headedness and lymph node swelling in my neck. I tested negative for Elisa and Western Blot, so no antibiotics were given. Then this spring I started with foot and leg weakness and extreme calf cramps and calf muscle wasting, with fasciculations, in one leg. Early (preliminary) diagnoses were concerning for ALS and (since I also tested serologically-positive for shistosomes) neuroshistosomiasis. One very interesting lumbar/thoracic MRI finding was an enhancement of the… Read more »

lisa
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lisa

i had lyme disease back in 2014 or 2015. i was treated with doxy and the symptoms went away. fast forward to about 2-3 years ago, i started showing some weird neurological symptoms. sometimes i couldnt find the right words to say, or i would think of two at the same time and mix them together and i would just stumble on my speech. i also noticed that my memory has deteriorated since then. i spent years thinking something was wrong with me, or that i had some kind of mental disorder. i never had any joint pain really, but… Read more »

Cgn
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Cgn

I was diagnosed in 2011/2012. I have periods of feeling “ok” and periods where I feel awful and spend hours scouring google and coming up with every horrible disease that accounts for all of my symptoms. It is so awful and I wish I could enjoy my three beautiful young kids and husband more but my mind focuses on how bad I feel

Kim koster
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Kim koster

I was bitten by a tick in spring of 2017. Had no symptoms other than hot flashes for a couple weeks (which I attributed to menopause), a very painful jaw and neck in the fall, followed by appendicitis which required surgery, and then tremors, and muscle fasciculations. I tested negative on the Elisa and positive on the western blot in May 2018 and was given 7 weeks of Doxy. The muscle fasciculations are the most troubling because now I am testing negative for the Western blot and Elisa and infectious disease Dr here in Hudson Valley is saying more indicative… Read more »

Arnold Mark Zinan
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Arnold Mark Zinan

Same here, got all the Post Treatment Symptons. Medical Community unable to officially diagnose and had to do my own research. I had Lyme Disease twice, yet tests are negative after treatment.

Mike
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Hi, I seem to have PTLDS. every 6 months or so, my FITbit shows a radical decline in my resting heart rate…40bpm.. (due to PVC’s which are not recorded as beats) and blood work shows that indeed I have Lymes. I take the medicine (my 5th regimen), and after a couple of weeks and the resting heart rate goes back up to 60bpm. The effect is nearly immediate. BUT lots of joint pain. and I don’t sleep at all. No problem with the brain/vision, fatigue etc. Do we just live with it and deal with the symptoms, or can we… Read more »

Anna
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Anna

My husband tested positive for lyme disease about 4 years ago. He was given antibiotics. Ever since he has had chronic pain in his hips and shoulders. He does not sleep well as he says pain wakes him up. He is stiff when he wakes up and it takes a few minutes for him to get his balance. I thought the pain or stiffness was causing his balance to be off in the morning but he says that is not it. He just feels like his balance is off and it takes him a little while for him to get… Read more »

Kate
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Kate

I was treated with the normal doxy for about 2 months and continue to have joint pain, But now have low T3/thyroid issue which I’m not sure is related. As I feel my immune system was compromised by the Lyme. Not sure if these are related. Also, don’t know if the residual effects of the disease can cause stomach problems like IBS. I’ve read this, but cannot find a straight forward answer. Evening having issues consuming red meat or pork. Almost like an allergic reaction

Bryn Devaney
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Bryn Devaney

Hi Dr Cameron – could PTLDS be responsible for enlarged mesenteric and pre-aortic lymph nodes? Have been through treatment (oral and IV) but many symptoms still linger. Wondering if its just cos everything is out of whack and needs time to heal or if it could be (as my specialist and GP are thinking it is) a virus playing havoc. Bitten 2 years ago, treatment since late January 2018. Thanks heaps.

Sherry Hedding
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Sherry Hedding

I believe my eye issues are symptoms of PTLDS as the eye discomfort when looking down started with other neurological symptoms prior to treatment (at 10 months post infection) and still remains to some degree long after 3 weeks of doxy. Coupled with increased IOP, pupil abnormalities and possibly a mildly drooping lid.

Mindy
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Mindy

Hi, You had treated my older son and me as well in the past and we greatly appreciate all your help! My youngest son has been on doxycycline for 4 weeks, he is 14 years old. Originally he had a headache and nausea, at first we thought it was a stomach bug, but then went to the hospital to get antibiotics. We also ruled out a concussion. He was treated for 4 weeks and is on last pills . He was really feeling better and now he is having fatigue, he says he isn’t sleeping well. He has missed weeks… Read more »

Joan Daily
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Joan Daily

I was diagnosed with Lyme disease in 2004. I was given antibiotics, which seemed to help. However, I still suffer from some of the symptoms, such as chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. The inability to walk right etc, are temporary and generally happen when I am really tired and have been working hard. I lost touch with reality. Suspecting it was the medication I Went off the antibiotics (with the doctor’s knowledge) and started on Lyme disease natural herbal formula I ordered from GREEN HOUSE HERBAL CLINIC, I spoke to few… Read more »

Billie
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Billie

Barbara, I feel the same. Everyday different but the same. Thank you for posting. I feel if we could talk with each other about our symptoms that might help emotionally.

Rob Birchler
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Rob Birchler

What a profound but accurate statement “Every day is different but the same. My issue is chronic fatigue, although it has been over 3 years I feel like I have never gotten my energy level back. I would welcome any sound advice or suggestions from anyone who has experienced this and has had success overcoming this ongoing feeling.

Barbara Cormack
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Barbara Cormack

I have all those symptons and I stopped treatment in 2013 after 2 1/2 years. I have good days and bad days and now learning to live with all this. Just keep my immune system boosted. I would love to wake up one morning and say I feel wonderful but know that isn’t going to happen. Barbara