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, conveyed a misleading and alarming message to clinicians and the public when he 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.)

Yale doctor dismisses chronic symptoms in children as not Lyme related. Kids diagnosed with 'medically unexplained symptoms.' Click To Tweet

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.

References:
  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.
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Cheryl
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Cheryl

It’s plain maddening that these types of doctors are allowed to talk this way. You know, I quit seeking medical care from Western doctors, but not due to this person at Yale, who is supposed to be a doctor. I see no reason to go into a medical office. They will seek out nothing. They prefer to use terms like, MUS, ironically which sound like words uttered in the fictional ER, “MU,” by Noah Wile’s character, Dr. Carter. He called a patient’s account this, which meant “made up.” And this “MUS” sounds like a made-up term. It is similar to… Read more »

Rebecca L
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Rebecca L

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
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Sandra

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
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Alicia Zuluaga

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… Read more »

Per Hansen
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Per Hansen

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… Read more »

Lynn Shepler MD JD
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Lynn Shepler MD JD

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… Read more »

Marty Young
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Marty Young

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… Read more »

Robin
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Robin

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

Cynthia Barker Congdon
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Cynthia Barker Congdon

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
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Randy Negley

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
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Kyle

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… Read more »

Phyllis Mervine
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Dr. Cameron, thank you for all your work and for continuing to speak out.

Maureen Falkowitz
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Maureen Falkowitz

Dr. Shapiro, I am truly disappointed in you and the conventional medical industry. Many years ago at the end of 1975, my son, who was 4 years old at the time, developed spiking fevers, a strange rash, pain, and then his right knee that swelled up and his right leg turned black. He was in the hospital and they didn’t know what was wrong with him. He had a fever of “unknown etiology” and was given oral prednisone. After being in the hospital for three weeks, he was discharged. I realized that he was no better off than before he… Read more »

Trish F
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Trish F

OMG, this is the best America has to offer? Yale has got to be the worst institution on the face of this earth. I don’t know if it is all greed based, getting handsomely paid by drug companies to keep people sick, some kind of nefarious Nazi eugenics program or these people have been in the coffins doing you know what in their skull~n~bones rituals too long but this is down right inhumane! How can this ghoul sleep at night. Let’s not find out what the hell it is!! Let’s just say it’s not Lyme!! These heathens deserve a special… Read more »

Lynn Shepler MD JD
Guest
Lynn Shepler MD JD

Ethically and legally, what Dr. Shapiro is doing is very problematic.

Dee
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Dee

Shapiro knows not of what he speaks. He tried for years to have Dr Jones license taken away, and it cost this poor man a fortune in medical bills. When shapiro was asked on the stand in court how many Lyme patients he treated daily, weekly, monthly and yearly, he could not reply. Dr Jones has successfully treated over 10,000 children worldwide in his 30 years of practice. He doesn’t need to keep practicing at 85 yrs old, but does it for the children. And this arrogant, ignorant evil entity has the audacity to put out incorrect information to the… Read more »

H. Tosto
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H. Tosto

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
Guest
Grace

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
Guest

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
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Elaine Hipple

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
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Anna Satalino

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… Read more »

Donna
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Donna

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.

Thumper
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Thumper

This is this doctors rate mds.com page with comments that he is used regularly in courts that children don’t have lyme. He is scary.
https://www.ratemds.com/doctor-ratings/18755/Dr-Eugene%2BD.-Shapiro-NEW%2BHAVEN-CT.html#/rating-2671082