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] Doctors have to rely on symptoms.

 

by Daniel J. Cameron, MD, MPH

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.


23 Replies to "What are the symptoms of Post-treatment Lyme disease syndrome?"

  • Barbara Cormack
    02/18/2018 (3:49 pm)
    Reply

    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

    • Dr. Daniel Cameron
      02/18/2018 (4:03 pm)
      Reply

      Sorry to hear you have some bad days. Too bad there is not a test to validate that a tick-borne infection has cleared.

      • Joseph F.
        03/12/2018 (2:24 am)
        Reply

        The test is common sense, while we suffer everyone is running around making a nice living off our suffering. How come 20 years later I can take 3 months of Doxy and herx my butt off and after stopping I can feel pretty damn good for a few months before I
        I start to tank again. Now no one will give me doxy cuz I have had runs of V-tach as part of my herx. No one will give me a defibrillator either to save me if I have a possible fatal event. So doxy helps chronic Lyme (post lyme syndrome) because I still have Lyme but Dr.”s on health insurance payrolls inform the government and public differently so they can make nice livings. Its B.S.!

  • Billie
    03/04/2018 (2:48 pm)
    Reply

    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
      03/08/2018 (7:08 pm)
      Reply

      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.

  • Joan Daily
    03/23/2018 (11:58 am)
    Reply

    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 people who used the treatment here in USA and they all gave a positive response, my symptoms totally declined over a 6 weeks use of the Green House Lyme disease natural herbal formula. I’m 70 now and doing very well, the disease is totally reversed! (Visit their website www . Greenhouseherbalclinic . com) I am thankful to nature, herbs are truly gift from God. I can now go about my daily activities and the pain is greatly diminished. Don’t give up hope, fellow sufferers. Share with friends!!

  • Mindy
    03/25/2018 (2:42 pm)
    Reply

    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 of schoolCan the doxycycline be affecting his sleep? What should be our next step, should I be doing anything to help him with the antibiotics? Is there any way you could get in touch with me. We will be making an appointment, I haven’t slept in days myself and we are all really struggling If there is any way you can get in touch with me I would greatly appreciate it.

    • Dr. Daniel Cameron
      03/26/2018 (1:24 am)
      Reply

      I am happy you and your son have done well. I am sorry to hear your 14 year old child is sick now. Give the office a call at 914 666 4665

  • Sherry Hedding
    03/29/2018 (1:26 am)
    Reply

    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.

    • Dr. Daniel Cameron
      03/29/2018 (3:55 am)
      Reply

      I don’t like the term “Post Treatment Lyme Disease Syndrome” also referred to as “PTLDS”. It implies that a persistent infection has been ruled out. A third of patients remain ill after 3 weeks of doxycycline at 6 months. You have been ill for 10 months. It is important to be evaluated by a neurologist and ophthalmologist in addition to looking at a tick borne illness.

  • Bryn Devaney
    06/03/2018 (7:11 am)
    Reply

    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)
      Reply

      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.

  • Kate
    06/21/2018 (9:26 pm)
    Reply

    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)
      Reply

      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.

  • Anna
    10/02/2018 (3:39 pm)
    Reply

    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)
      Reply

      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.

  • Mike
    10/15/2018 (11:02 am)
    Reply

    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)
      Reply

      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.

  • Arnold Mark Zinan
    10/27/2018 (12:06 pm)
    Reply

    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.

  • Kim koster
    11/21/2018 (12:13 am)
    Reply

    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)
      Reply

      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.

  • Cgn
    12/01/2018 (8:33 pm)
    Reply

    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)
      Reply

      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.


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