Yale doctor says children don’t have Lyme, but medically unexplained symptoms
Dr. Eugene Shapiro, from the pediatric infectious disease clinic at Yale Medical Center, conducted a review of patient records. He discussed his findings in a videotaped interview and urged the medically community to develop ways to prevent "healthcare-seeking behaviors" by parents who believed their children may have Lyme disease.
In a 2014 interview, Dr. Eugene Shapiro, dismissed patients’ concerns over chronic symptoms associated with Lyme disease And recommended the medical community “figure out ways to reduce healthcare-seeking behaviors” by patients who are ill and told they do not have Lyme disease.
Shapiro expressed his concerns after reviewing Yale Medical Center’s patient database and finding that more than 50% of referrals to the pediatric infectious disease clinic were for suspected Lyme disease.
But out of those referrals, he claims “between 80-90% in fact did not have active Lyme disease, but had chronic symptoms likely unrelated to Lyme disease, which we term ‘medically unexplained symptoms’.”
(Note: There is no way to determine if a Borrelia burgdorferi (Bb) infection is active or inactive.)
[bctt tweet=”Yale doctor dismisses chronic symptoms in children as not Lyme related. Kids diagnosed with ‘medically unexplained symptoms.’ ” username=”DrDanielCameron”]So, what happened to those patients after Dr. Shapiro and colleagues at the center diagnosed them with ‘medically unexplained symptoms’? Yale Medical Center wanted to find out. Follow-up phone calls revealed that:
- “Approximately [50%] of the parents were not happy with the results of the [Yale] consult visit;
- “Nearly [50%] [of the patients] received additional treatment [elsewhere] for these ongoing symptoms;”
- “More than [50%] sought [help from] other providers, other than their primary care physicians because of the symptoms.”
“It’s very clear,” Shapiro says, “that simply telling parents that Lyme disease is not the cause of these non-specific symptoms, such as fatigue, various pain syndromes, is not sufficient.”
“Very frequently, these parents and patients are seeking affirmation that the symptoms are real. And they are real. They are just not caused by Lyme disease.”
So, “we need to figure out ways to reduce healthcare-seeking behaviors where patients are trying to often get treated unnecessarily with anti-microbials.”
Medically unexplained symptoms
The term “medically unexplained symptoms” (MUS) has been used in patients with significant symptoms without a physical disease.1 The term also includes individuals with overlapping clusters of symptoms such as irritable bowel syndrome, fibromyalgia or chronic fatigue.
The most common symptoms attributed to MUS: pain, including diffuse myalgias, arthralgias, low back pain, headache, and dysuria.1 Other symptoms include fatigue and insomnia, tinnitus, atypical facial pain, chest pain, palpitations, dyspnea, bloating, nausea, abdominal discomfort, constipation, and diarrhea, chronic pelvic pain, dyspareunia, vulvodynia, and dysmenorrhea, pseudoseizures, dizziness, weakness.1
MUS is presumed to be a psychiatric diagnosis. Treatment of MUS has been dominated by talk therapies.2 Dr. Unigwe writes that “persons with medically unexplained symptoms are often not perceived as having chronic, enduring, mental and physical illness.”
Lyme disease patients may be misdiagnosed as MUS, in part due to the poor sensitivity of Lyme tests. Out of 104 patients diagnosed by an EM rash, 41% tested negative before and after treatment.3
The majority of seropositive individuals on both acute and convalescent serology had a positive IgM and a negative IgG western blot. “These findings underline the difficulty for rheumatologists in identifying a prior exposure to Lyme disease in caring for patients with medically unexplained symptoms or fibromyalgia-like syndromes.”3
Editor’s Note: Whether it is our patient or our child, seeking a second medical opinion, consulting with other specialists and vigorously researching every avenue that might improve the health and quality of life for that child is of the utmost importance. No physician should discourage families from seeking to find treatment that works and will bring relief to their child.
Related Articles:
How the incidence of an EM rash can be inflated
Study finds misdiagnosis and delayed diagnosis common for Lyme disease patients
Case report: persistent pain and fatigue after treatment for Lyme disease
References:
- Isaac ML, Paauw DS. Medically unexplained symptoms. The Medical clinics of North America. May 2014;98(3):663-672.
- Unigwe C, Rowett M, Udo I. Reflections on the management of medically unexplained symptoms. The psychiatric bulletin. Oct 2014;38(5):252.
- Rebman AW, Crowder LA, Kirkpatrick A, Aucott JN. Characteristics of seroconversion and implications for diagnosis of post-treatment Lyme disease syndrome: acute and convalescent serology among a prospective cohort of early Lyme disease patients. Clin Rheumatol. Jun 13 2014.
Rebecca L
05/25/2019 (8:30 am)
As a kid I grew up with undiagnosed Lyme Disease, I would have killed for a diagnosis. It was back in the 80’s and I was treated like a “Unknown Cause Patient”. Rot Yale Rot! My Chronic Lyme is 8 years in remission with proper Lyme Treatment!
Sandra
05/24/2019 (9:40 pm)
I live in New Haven and Yale is the local medical resource. This behavior is not confined to children and Lyme. It is the Yale MO. They look at the one thing they are looking at and then stop. They dont see it that because that one thing is not the cause of your problem (whatever it is) you still have an issue. It’s an institution wide behavior. Its unbelievably frustrating.
Alicia Zuluaga
03/22/2017 (12:56 am)
i was told for years that i didn’t have lyme, due to borderline test results (along with 2x positive elisas). i finally found someone willing to treat me with abx for 4 weeks, and the improvement was dramatic. it wasn’t quite enough tho, and a year and a half later the heart palpitations and exhaustion were coming back. so i went back for another round of tests, which showed quite clearly, all 3 bands positive on the IGM. The IGM supposedly shows a previous infection only. SO WHICH DOCTORS WERE WRONG, THE ONES WHO SAID I DIDN’T HAVE LYME INITIALLY OR THE ONES WHO NOW SAY THAT I USED TO HAVE LYME. or, do i still have lyme. it can’t be be all 3. clearly the tests are not effective.
Per Hansen
07/20/2015 (11:01 am)
Thank you for shedding a light on this disease. Many doctors in the USA have faced intimidation from the government when treating people with this disease. The same is now the case in Norway. The doctor that used to treat me, in a private clinic because the public health system would do nothing, lost his medical license mid-2013. A consequence of this action by the norwegian health authorities is that prolonged treatment of patients with lyme borreliosis for all practical purposes has been outlawed and is now illegal. No other doctor is willing to treat because they face an immediate risk of loosing their medical license. At the same time the health authorities are continuing their song and dance of non-examination and non-treatment while occasionally filling the newspapers with the usual propaganda that there is nothing to worry about. This doctor, Rolf Luneng, is now suing the norwegian health authorities to regain his medical license and the right to treat us. He is in need of funds for this, amongst other things to pay for the expenses of foreign expert witnesses who will testify about lyme borreliosis. The public cause is to be found on facebook, https://www.facebook.com/SupportLuneng . There is also a separate webpage, https://www.supportluneng.no/en/, that should make it easy for international donors to contribute. Any help in getting treatment of people with chronic illness from lyme borreliosis legalized in Norway would be appreciated by the norwegian patients.
Lynn Shepler MD JD
07/18/2015 (9:03 am)
The first publication Shapiro appears to cite as a reference — an article published in the “Medical Clinics of North America” — last I checked, is a non-peer reviewed publication. It is an opinion-based publication. In the past, I have published something in this series. No one reviewed my work other than likely checking for grammatical errors. Note that Paul Lantos, MD published another paper in one these specialty review volumes entitled “Chronic Lyme disease.” The publisher of this series (for example, I published in the “Psychiatric Clinics of North America) has a long list of these hard-bound series targeted at a variety of medical specialties, all with the same title — except the name of the specialty is switched out — but I don’t believe any of the publications undergo peer-review.