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"

  • H. Tosto
    11/29/2014 (4:33 am)

    This is the poorest most vague and unreliable infectious disease testimonial I have ever seen. The book is Closed on Pediatric Lyme Disease. It can be chronic and it is very real. Post Lyme Syndrome. This is the correct term, not “MUS”.

  • Grace
    11/29/2014 (1:07 am)

    if there is no accurate testing for Lyme and as of today, there is not, how is this a valid conclusion? Testing is inadequate and inaccurate . So, until we remedy that problem, these tests and conclusions are inaccurate. Stop wasting money on this and develop accurate testing first.

    • Dan white
      01/07/2015 (10:02 am)

      Hi! Im Dr and PHD …i contracted lyme in 1988 and it took five years to get a proper diagnosis.
      Even my compatriots could not /!would not .understand.. I finally saw a Dr with lyme experience
      In up state NY! By then, even at forty, I was getting some angina but tests were negative.
      I felt awful for years even though I still took antibiotics if the sweats came back..
      This pseudo scientist only has to LOOK at the physiology reports on spirochetes
      Ability to morph when inactive and not show up on tests as previous!

  • Elaine Hipple
    11/27/2014 (2:38 pm)

    Whenever there is not a straightforward test for something it is easier for the medical profession to claim it’s psychiatric in nature or they apply a label like MUS. It is a tragedy and slap in the face to all of us with chronic illness.

  • Anna Satalino
    11/27/2014 (10:03 am)

    I am appalled that this ridiculous debate about diagnosing Lyme Disease continues especially regarding children. Dr. Shapiro, in light of the growing numbers of infections, unreliable testing, and symptoms that scream tick borne infections, are you really going to accuse parents of healthcare seeking behaviors? MUS ?? Medically unexplained symptoms ? Quite frankly, you should be ashamed of yourself for this nonsense and unacceptable deception. Perhaps you believe that you will have no one to answer to when you pass..but you will have to answer for every deception and for every time you looked into a parents eyes and recited this garbage…

  • Donna
    11/27/2014 (12:22 am)

    Wow. Imagine a parent seeking a more medically curious diagnostician than one who simply stops at MUS. What he’s really demonstrating is that so many PCPS are under informed and misguided, and are unable to help these patients. That’s the message I am hearing, and he’s trying to blame the parent seeking real answers it seems.

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