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.
SB
02/21/2019 (7:20 am)
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 depression after treatment? Or can I just be feeling “depression” due to lack of sleep and energy?
Thank you for your thoughts!
Dr. Daniel Cameron
02/21/2019 (8:41 am)
I often have patients with a combination of fatigue, sleep issues and depression after treatment. I also have depressed patients. I often find antibiotics helpful for patients who had thought their problem was “PTLDS.” I have also had patients where treatment for depression has been helpful.
SD
01/13/2019 (3:34 pm)
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 nerve root, which could suggest infection, inflammation, and even infestation. Treatment for the shistosomiasis (steroids and Praziquantal) resulted in no change.
Desperate for an alternate diagnosis, I paid for the IGeneX testing, which yielded positive findings for both Lyme IgG and IgM. I underwent oral Zythromax and Cefdinir treatment for 25 days and then IV Rocephin treatment for 28 days. Other than the alleviation of daily fevers in the evening and nighttime sweats, I feel no better. In fact, the fasciculations have spread to my other limbs, back, and sometimes my chest. My leg is very weak requiring me to use a leg brace and a cane to get around. Is there any sense in me pursuing further Lyme treatment, and if so, would you recommend me making an appointment with your office?
Dr. Daniel Cameron
01/13/2019 (10:32 pm)
You did not mention treatment for Babesia.
JP
01/20/2022 (3:59 pm)
SD, have you found a diagnosis or treatment that suits you? Our situations sound very similar.
lisa
01/11/2019 (3:52 pm)
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 i related to some of the neurological signs, which concerned me.
Dr. Daniel Cameron
01/13/2019 (10:29 pm)
You should be evaluated by a doctor experienced in treating Lyme disease in addition to your other specialists in case there is a persistent infection.
Shaynna Castro
07/11/2019 (12:09 am)
Can lyme happen without joint swelling but neuromucular control issues?
Dr. Daniel Cameron
07/11/2019 (12:36 am)
Yes. The first Lyme disease cases typically presented with joint pain because they were described by rheumatologist, e.g., Dr. Steere.
Cgn
12/01/2018 (8:33 pm)
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
Dr. Daniel Cameron
12/01/2018 (10:03 pm)
I am sorry to hear you have felt better only to suffer a recurrence. I have patients in my practice where I have to comb over the history looking for treatment options.
Kim koster
11/21/2018 (12:13 am)
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 of motor neuron disease. I am really scared now and have an appointment with a neurologist. Any advice/feedback would be appreciated-thank you!
Dr. Daniel Cameron
11/21/2018 (4:22 pm)
I follow my patients closely. It is important to see a neurologist. I also look at whether there is any evidence of a continued tick borne infection.