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.
Arnold Mark Zinan
10/27/2018 (12:06 pm)
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
10/15/2018 (11:02 am)
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 stop this? I’m VERY active at 65…Hiking in the Alps a couple of months ago…basketball with college kids…5k’s. Do I cause the recurrences by too intense of exercise? If this is a solvable problem, I’d like to solve it. If this is a new normal, what adjustments do I need.
Dr. Daniel Cameron
10/15/2018 (2:52 pm)
There are doctors who use the term “PTLDS” to suggest the problems are a syndrome rather than a persistent infection. I find you heart rate changes have not been studied i sufficient detail. I cannot tell without an assessment whether additional treatment is a consideration.
Nevertheless, I am encouraged that retreatment continues to help.
Anna
10/02/2018 (3:39 pm)
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 his balance back. I have taken him to a physician and two orthopedic doctors thinking it was arthritis. The physician is at a loss as his blood work is good, and the orthopedic doctors have told us his arthritis is minimal and would not be causing these symptoms. He also has no energy anymore. Could this be lyme disease, and if so, what can be done for him? I am at a loss in finding how to help him.
Dr. Daniel Cameron
10/02/2018 (3:56 pm)
You should include a doctor with experience treating chronic manifestations as part of your evaluation. Call my office at 914 666 4665 in New York if you need help.
Kate
06/21/2018 (9:26 pm)
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
Dr. Daniel Cameron
06/22/2018 (12:43 pm)
The thyroid numbers are often off during Lyme disease. Stomach issues are also common. It can be difficult to be sure Lyme disease and co-infections have resolved. You should consider looking at Lyme disease again, perhaps with a different treatment if your other specialists cannot resolve the issues.There are researchers studying red meat allergies after a tick bite.
Bryn Devaney
06/03/2018 (7:11 am)
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.
Dr. Daniel Cameron
06/04/2018 (6:46 pm)
I am not sure lymph nodes are related. I work up my patients to rule out other illnesses. It can be difficult to be sure a persistent infection is not a cause of the other issues.