Post-treatment Lyme disease syndrome is a serious problem
More than 300,000 people contract Lyme disease in the USA every year with many continuing to suffer from long-term illness. In some cases, those persistent symptoms have been dismissed by physicians as being psychosomatic, or caused by something other than Lyme disease. But now, researchers at the Johns Hopkins University School of Medicine acknowledge the existence of what is called Post-treatment Lyme Disease Syndrome (PTLDS).
According to Rebman and colleagues, writing in the journal Frontiers in Medicine, PTLDS is a severe complication of Lyme disease. [1] The authors identified PTLDS using the Infectious Diseases Society of America (IDSA) proposed case definition. [2] “Briefly, this definition relies on prior physician-documented Lyme disease, treatment with standard of care antibiotics, and the development of significant fatigue, widespread musculoskeletal pain, and/or cognitive difficulties that last for a period of at least 6 months, and began within 6 months of a Lyme diagnosis and recommended treatment,” explains Rebman.
Individuals with PTLDS represent a group of patients who have been evaluated for “unexplained fatigue, pain, and neurocognitive symptoms by primary care and sub-specialty physicians,” the authors state. These patients are “highly and clinically significantly symptomatic, with poor health-related quality of life.”
[bctt tweet=”Nearly 60% of patients with post-treatment #Lyme disease syndrome had a delay in diagnosis or initial misdiagnosis. ” username=”DrDanielCameron”]“PTLDS patients,” Rebman states, “exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls.”
Post-treatment Lyme disease syndrome can last for years, study finds.
According to the study findings, PTLDS can last for years. “Our cohort was a median of 3.6 years from onset of PTLDS symptoms to study enrollment, with a range of 8.3 months to 27.7 years,” states Rebman.
And, PTLDS can occur even in Lyme disease patients treated within 30 days of the onset of symptoms. “Time from illness onset to first recommended course of antibiotic treatment was a median of 30 days,” according to Rebman.
Additionally, 59% of the patients with PTLDS reported having a delay in diagnosis or an initial misdiagnosis. Risk factors for PTLDS include a delay in diagnosis and an increased severity of initial illness, including the presence of neurologic symptoms.
The authors did not address other manifestations including chronic neurologic Lyme disease [3] and neuropsychiatric Lyme disease. [4]
The Johns Hopkins study should put to rest the false narrative perpetuated by the 2006 IDSA treatment guidelines which states, “In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection.” [2]
Related Articles:
Case report: persistent pain and fatigue after treatment for Lyme disease
Johns Hopkins’ study supports early identification of Lyme disease patients for re-treatment
At least 50% of patients with Lyme neuroborreliosis remain ill years after treatment
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.
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
- Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
b
07/22/2021 (2:47 pm)
I have had paresthesia for past 2 years following a dental filling. Possible tick exposure also. Lyme test was negative. 93 band on western blot. Treated with 28 days of doxycycline and then diclofenac sodium. B12 dropped in 5 month period. Vitamin D low also. Treated with B12 injections and vitamin D. Rashes and other symptoms.
I had lyme disease in 1996-tick bite-bulls-eye rash documented and positive lyme test. I was treated with 21 days of doxycycline. Within 4 months had neurological symptoms. 5 months later-flu-like symptoms and others. No treatment as late stage IGG negative and only a few bands on western blot.
Concerned of progression of nerve pain symptoms and no treatment. Only prescribed gabapentin-not resolving symptoms.
Dr. Daniel Cameron
07/24/2021 (7:45 am)
I have Lyme disease patients who have not resolved their symptoms within 3 weeks. Up to one in three individuals with Lyme disease remain ill on long term followup in some studies. I find it useful in some individuals to look at Lyme disease again.
Elizabeth Corsino
04/19/2021 (5:20 pm)
I was bitten by a tick in May of 2004 I had the bullseye rash and I had tested positive for the Borrelia Burgdorferi. The problem is that I was given amoxicillin 250 mg and a steroid cream to use for a month because I was pregnant at 5 months, so I don’t know if it actually worked or not because there were no other blood test done that I can find. After I left the military I started to experience joint pain, headaches, arthritis, dizziness and stiffness all over my body since 2006. The problem is that now trying to get the doctors to take me serious about how I am stiff all over and how all my joints hurt every morning when I wake up thank you for letting me know about this article PTLDS because it helps clear up a lot of more understanding to what is happening to me. Do you have any advice for me on how to continue on now to help myself get better?
Dr. Daniel Cameron
04/19/2021 (7:05 pm)
I advise my patients to see a doctor familiar with treating chronic manifestations of Lyme disease rather than dismissing the problem as Post Treatment Lyme disease Syndrome (PTLDS).
Katie K
10/28/2020 (6:41 pm)
I was eventually treated for Lyme 12 years ago after being very sick as a teen. We didn’t find a bite or rash but I tested positive. Since my symptoms persisted, I received multiple rounds of 28 day doxy until another doctor tested me again and told me I was treated. Nothing has changed since. I’m 26 and have frequent flair ups of muscle pain, joint pain and swelling, headaches, fatigue, nerve hypersensitivity, insomnia, restless legs, and brain fog. I don’t think it’s normal to feel this way at my age but it’s been nearly half my life so I don’t know. I have an active job and still push through when I’m like this. Sometimes I feel pretty okay. I’ve ended up at OSS and physical therapy with a diagnosis of a slight scoliosis only. Who am I supposed to see who will take me seriously that these symptoms are connected?
Dr. Daniel Cameron
10/28/2020 (7:38 pm)
I typically treat try a different antibiotic for Lyme disease if doxycycline fails in my patients. I sometimes find treatment for Babesia even the test are negative. I also refer to specialist to rule out other illnesses. Call my office at 914 666 4665 if you have any questions.
Gayle
09/08/2020 (10:30 am)
I went to the doctor in March 2020 with a tick still partitally visible in my arm with a three inch ring around the bite and a rash all over my arm. The doctor from upstate NY said it was Lyme, brought in nurses to show them what it looked like and watched him dig out the rest of the tick. I was on doxy for 21 days but six months later I still have terrible dizziness and brain fog, fatigue, not my same personality. I went back, he gave me blood tests and said since they are negative, I have never had Lyme, even though he was adamant I did, and something else is going on. How ironic would another disease show up at that exact time of a tick bite with the bulls eye, rash and typical Lyme symptoms? What do I do now? Could it be a false negative test? If a brain MRI shows something, would it be specific to Lyme?
Dr. Daniel Cameron
09/08/2020 (11:31 am)
The tests can be negative after treatment for Lyme disease. A third of well documented Lyme disease patients are ill on long term followup. The MRI can show white spots in Lyme disease but they are also seen in other diseases ie multiple sclerosis, migraines, and depression.
Your doctor would have to make a clinical judgment. Call my office at 914 666 4665 if you have any questions.
Lee
11/12/2020 (11:54 pm)
People that have been through what you are dealing with can certainly understand the frustration we all have dealt with.
Regular doctors know little to nothing about Lyme, nor anything about treating it. This of course is a big problem for the infected person. You don’t know it could be Lyme yet.
Normal blood tests that doctors use, and including the Mayo Clinic will show no virus, and will come back negative. These doctors are also reluctant to send you to a known Lyme Specialist as well.
What to do? There’s only one way that I personally trust (but not baring others that may exist). That is to find the closest Lyme Specialist to your location, and ask questions on how they would treat you should your test come back positive.
I was sick for more than 20 years (incredibly sick). I tell you this so that you can have hope for getting better. After all that time of spending all my money on one doctor to the next, I happened on a web site that listed most of the symptoms that I had, and explained that it could be the Lyme disease.
At that point, my girlfriend found a great doctor that deals with only this and Fibromyalgia. Her name is Dr. Patricia Salvato, in Houston Texas. She did not stick me on the mindless 30 day routine of one antibiotic, and call it good.
Her method was first to take blood and send it for a test to one particular lab located in California, I think.
It was positive, so the next step was to put me on a rotation of 3 antibiotics. Doxy-Cycl Hycl was one. It has been about 8 or 9 years, so I can’t recall the other two.
I won’t get into the reasons she did it this way, but it was a method of outsmarting the virus. Depending on your severity, the program could last a while until your tests come back negative. You get a blood test after going thru one rotation. So, you may end up having at least three.
In my case it took a year of treatment to get negative. I was feeling slowly better over that year of treatment. After it was all over I was able to do things that I hadn’t been able to in years. My test had no markers that indicated that the virus was still there.
Yet, some of the problems never really went away. The term (PTLDS), that many like myself live with is given a nod in most circles. But I’ve dealt with it for the past 8+ years, and it doesn’t look like it’s ever going away. If only there was an effective treatment for brain fog, I would dance around the moon.
If you have not been infected for too long, you may not have to suffer with PTLDS. It most often is the chronic state of the disease that brings you to that. So, take heart there.
It’s worth the effort finding just the right doctor that has worked with Lyme enough to understand the phantom tactics the virus is so good at.
I wish you success in getting the right doctor, while saving yourself years and a lot of pain and money by not going to MDs that pump antidepressants for your imagery syndrome.
Mark Z
09/08/2020 (12:59 pm)
I also had a negative lyme result even though I had the rash and the bite mark. Still suffering from fatigue and brain fog for over 2 years. Just keep going, day by day. There is no current cure.
Dr. Daniel Cameron
09/08/2020 (4:01 pm)
It is not clear from your comments as to whether you have been treated.
Hamed
07/04/2020 (10:07 am)
Hi, I have a question about Lyme disease. About a month ago, I had a tick biting. After two days My joint (near to the waist) leg has pain and now the region is numb. I searched on the internet that this is the peripheral neuropathy due to Lyme disease. So, what can I do for this problem? Is there any drug for the curring?
Dr. Daniel Cameron
07/04/2020 (10:38 am)
You should see your doctor. I include Lyme disease and other tick-borne infections in my patients. I find these symptoms typically clear with antibiotic treatment. Call my office on Monday at 914 666 4665 if you need any help.