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.

  1. Isaac ML, Paauw DS. Medically unexplained symptoms. The Medical clinics of North America. May 2014;98(3):663-672.
  2. Unigwe C, Rowett M, Udo I. Reflections on the management of medically unexplained symptoms. The psychiatric bulletin. Oct 2014;38(5):252.
  3. 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.

23 Replies to "Yale doctor says children don't have Lyme, but medically unexplained symptoms"

  • Marty Young
    07/17/2015 (7:02 am)

    Thank you, Dr. Cameron, for treating our Lyme adolescents and adults, as well as helping to train new generation of medical professionals regarding the testing, diagnosis, and treatment of Lyme and tick-borne illnesses. A huge thank you to Dr. Charles Ray Jones for helping my child when he was so sick the first decade of his life. He recently graduated Summa Cum Laude and is off to college this fall. Did have an interview with Yale, but chose to go to UC-Davis in CA. If he had received a MUS diagnosis years ago with his CDC positive Western Blot and laundry list of classic symptoms, I would have sued for medical malpractice! Does Dr. Shapiro have children? Grandchildren? He’s retiring when? Just wondering………see y’all in FL!! 😉

  • Robin
    07/16/2015 (10:58 pm)

    I think these Lyme-denialist doctors have MUD – Medically Unacceptable Doctoring.

  • Cynthia Barker Congdon
    07/16/2015 (9:55 pm)

    My only comment is that karma WILL get you. The willful and intentional denial of an extremely complex disease that is ruining lives and causing untold suffering, is EVIL. I can only hope that someone you love does not contract Lyme Disease or other tick-borne disease, but I DO wish it on YOU — all the doctors who continue to ignore peer-reviewed science, against a brick wall of denial borne of greed. May the ticks find you.

  • Randy Negley
    03/11/2015 (10:12 pm)

    So easy to say not Lyme related but the bottom line is its time to come up with better test standards and treatments.
    To have so many children and adults suffering with the same symptoms for so long and it continues to get worse is totally unacceptable.

  • Kyle
    03/11/2015 (6:30 pm)

    Right its is Lyme in a dormant form. Until there is a med that kills the bacteria that goes dormant, I feel strongly that the cycle will continue in most that have reached chronic stage or been undetected or given the minimum treatment. The meds like flagyl and other cyst and bio film busters do some work but they are being out done by this bacteria. I have been infected with Lyme and coinfections for 25 years, and it seems to clear to me I am on the same constant cycle at a much more rapid pace as those that get low level treatment and are lulled into thinking they are better because the bacteria runs and hides and appears to be gone to patient and doctor only to rear its head again down the road but in advanced stage Lyme it seems this happens much more rapidly with even more violent swings with very few people ever getting past baseline or as I like to say get to the point of heading down the other side of the hill before they slid back the slope they have already walked.

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