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.
Joseph Furr
07/01/2022 (1:12 pm)
Mary,
I have had Fibro since I was about 23. I’m 78 now. Muscle cramping was daily and after being treated for Lyme (2019) with Doxy 6 months I later noticed weight loss and muscle atrophy after that. I also had fallen and broke 6 vertebrae just before the tick bite. Fortunately, surgy wasn’t needed. In 6/2022 I stumbled on P.E.A. Luteolin (palmitoylethanolamide) on the internet and couldn’t believe the possitive reviews on NIH! Plus, the 2 chemicals inolved are made in the body and also from palm oil and lemon among other veggies. I’m on the 4th day and cannot believe how much BETTER I feel. The brand is Gold Health from amazon. Whatever you do stay away from benzos! BTW Doxy has shown to creaate persistent form of the Borrelia B., this according to Dr. Willi Burgdorfer, US gov emplyoyee and Dr. Eva Sapi, New Haven Conn
Mary Bungert
03/24/2022 (9:35 am)
I went 12 years undiagnosed. Finally a Functional holistic doc diagnosed me with chronic lyme. I went to a LLMD and was treated with antibiotics and supplements, antimicrobials for 18 months. I continue to suffer with lethargy, unlivable fatigue. I am now told it is Fibromyalgia. I am taking supplements, gabapentin and Cymbalta. Nothing seems to help and I have no quality of life.
JP
01/13/2022 (5:14 pm)
I tested positive for Lyme, Batronella henslae, and bartonella quintanna through Galaxy labs. My ILADS doctor also beleives I am infected with babesia and possibly erlichiosis after his physical exam. After seeing multiple neurologists (6) for muscle twicthing and atrophy, and receiving multiple EMG’s I decided to see an ILADS doctor. I have been receiving antibiotic treatment since August and feel no better. We have tried different combinations of valtrex, doxy, flagyl, zithromax, hydrochorl., ivermectin, and autovoquone at different pulses throughout the process. I feel weaker and in more pain than I ever have, and my atrophy and twitching has become more widespread and severe. Just recently my lyme doctor told me he was at a loss for what could be wrong. I recently had another appointment with a neurologist who did not find “anything alarming” in my exam, but scheduled me for another EMG. During the visit the neurologist expressed their lack of belief in Lyme and it’s co-infections. I am lost, scared, and not sure where to turn. Any suggestions?
Dr. Daniel Cameron
01/13/2022 (8:02 pm)
I have patients where they remain ill despite antibiotic treatment who have not found a neurologist helpful. There are a few treatment options I use for my patient such as oral cefuroxime and IV Ceftriaxone. I have not been in favor of pulse therapy. I have patients in my practice who have failed treatment who have also not found neurology helpful.
Bertha Argandona
07/21/2022 (7:38 pm)
Hello, I’m fighting Lyme too for the 3rd time with doxycycline. I finished the antibiotics last month and still have all the symptoms. I eat clean. I am taking shakes, vegetables, fruits, vitamins B, D, and liquid. I exercise my knees and my neck to relieve the pain. I am scheduled to see a Rheumatologist, an Infectious disease doctor who treats Lyme disease. There are no openings until 08/17 and 08/18.
I do not get anxious. I lift up myself and think positive. I live alone. I am 63. No disease is going to take me down. I had a hip replacement last year and now I need a knee replacement. My symptoms are scarring and annoying. I never give up. The doctors told me my physical is great! On 3 occasions I had to asked for Lyme disease test. Then they do it.
Otherwise they don’t. Please tell your friends and family to do Lyme tests every 6 months at least, 🙏🙏
Drink lots of water and detox your body with veggie shakes We will get better. Holistic to treat Lyme does not accept any insurance.
Love you, God Bless you
Dr. Daniel Cameron
07/23/2022 (7:18 am)
Thanks for adding your comments.
Pamela Vaughan-Heaster
09/28/2022 (4:47 pm)
Can you be tested again after 8 years … I was told I had Lyme and reg dr gave me antibiotics and basically acted as no big deal. A few years later was diagnosed with fibromyalgia… told dr I had Lyme before asked are sure it is fibromyalgia…got dismissed I am now 46 and a lot of pain, memory trouble, etc… how do I go about finding any one to retest me. Would it show up . I live in NC and I am just frustrated.
Dr. Daniel Cameron
09/29/2022 (7:47 pm)
I advise my patients to look a second time at Lyme disease when being evaluated for Fibromyalgia. I have had patients who responded the antibiotics years after their initial antibiotic treatment.
Brobby
02/18/2024 (12:40 pm)
Doctor, is this combination of two AB together : cefuroxime + IV Ceftriaxone ?
Or you use one of them ? Thank you.
Seems i have PTLDS with continue of muscle twitching in all body.
Dr. Daniel Cameron
02/19/2024 (9:10 am)
Cefuroxime (Ceftin) is the same family as IV ceftriaxone (Rocephin). I don’t use two drug in the same family at the same time.
Kc
09/05/2022 (9:13 am)
Hey JP, I’m in a similar situation very similar symtoms. No atrophy yet though. I’m pursuing lyme at this point since my EMG came back negative. Doctors so far gave me nondiagnostic. Been struggling with this for years. My lyme tests came back negative but going to a lyme specialist and going to run western blot. If your convinced it lyme causing your issues I would try ahcc, japanese knotweed, cats claw. Theses have all been per reviewed to combat lyme and many have had good results taking these. There’s some pre-made formulas on Amazon that have these and some other ingredients that have proven to be effective towards lyme. Worth checking out. I’m starting some of these but ahcc gave me insomnia so I had to stop. Do your own research on these but worth a look into.
Kamal Vaid
09/20/2021 (5:17 pm)
Greetings,
I found a tick embedded in my right thigh after a hike. I found it about 30 hours later and told my doctor I needed doxy for 3 weeks. I got the tick tested and it was positive for Lymes, Borrelia and Anaplasmosis. I also saw a Naturopathic doctor as well and started some supplements and herbs/ tinctures. I never really had any symptoms of the infection and I thought I was okay and was not too compliant taking what my ND prescribed. Long story short, in May 2020 I was bit, August 2020 tested positive for Lymes (still didn’t have any direct symptoms) but then November 2020, I started getting muscle twitches (fasciculations) throughout my entire body and developed eyelid myokymia. This added a lot of anxiety as I thought it was something serious. Since then, I’ve been to 2 neurologists and both have attributed the twitches to benign fasciculation syndrome and/or anxiety. The twitching does get worse some times and there are days where it’s minimal. I’m currently looking for a LLD (Lyme Literate Doctor) in the Chicago area to see if there’s something that can be done for the twitching as it gives me extreme anxiety which I think then perpetuates the stress response and it’s like a negative feedback loop where my anxiety shoots through the roof and I cannot heal. Any ideas would be greatly appreciate and I appreciate Dr. Cameron’s work on Lymes and I applaud you all for fighting this fight. I’m glad I’m not a lone and it makes me a little more at ease knowing that there is some hope.
Dr. Daniel Cameron
09/20/2021 (7:45 pm)
It was important that you were evaluated by two neurologists. I typically look a second time for a tick borne infection. There are typically other symptoms or findings that will help with the diagnosis. I have also had patients with unexplained fasciculations.
Sandy
05/29/2022 (7:31 pm)
I go to Dominic patawaran at I squared medical group
Tracy Lipscombe
12/17/2020 (7:30 am)
Hey guys, I was laughed at for wanting a Lyme disease test back in the summer, and it actually came back positive. I suffer pain all over my body in my joints, muscle twitches and spasms, chest pain, anxiety, irritability and more. I got a little better after the course of oral antibiotics, but I am still having symptoms. I am so overwhelmed. Should I get IV antibiotics? My blood pressure sky rockets randomly sometimes and I developed mitral valve regurgitation. I’m so scared and feel so alone, I don’t think the doctors understand what I’m going through. I was having symptoms since July 2020 but wasn’t diagnosed until I became my own advocate in September 2020. It’s now December and I am getting new symptoms, like pain in my face and mouth. I just wish I was treated sooner. COVID has completely swept Lyme under the rug and I don’t think it’s nearly as bad.
Dr. Daniel Cameron
12/17/2020 (8:02 am)
I have found a number of other antibiotics beyond doxycycline helpful in my Lyme disease patients. Some of them have had co-infections. I also have to look for other illnesses. Call my office at 914 666 4665 if you have any questions.