Yale study says children don’t have Lyme, but medically unexplained symptoms

I recently came across a video interview featuring Dr. Eugene Shapiro, in which he discusses a study conducted at Yale’s pediatric infectious disease clinic, which found that chronically ill children suspected of having Lyme disease were instead diagnosed with medically unexplained symptoms (MUS).

Dr. Shapiro’s interview, conducted during the 2014 Pediatric Academic Societies Annual Meeting in Vancouver, Canada, sends a misleading and alarming message to clinicians, as well as family members serving as advocates for their children. It is also particularly concerning given that the highest reported incidence of Lyme disease occurs in children ages 5 – 14, according to the Centers for Disease Control and Prevention (CDC).  Careful attention, including consulting with multiple medical specialists, should be given to this population in ensuring that a correct diagnosis is made.

According to Dr. Shapiro, Yale Medical Center’s pediatric infectious disease clinic reviewed its own patient database, focusing on cases made through outside referrals. The study found that more than half of the referrals were for patients suspected of having Lyme disease. However, 80-90% of those patients were deemed to not have ‘active Lyme disease,’ says Dr. Shapiro, but were instead diagnosed with medically unexplained symptoms or MUS.

The term 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 symptom attributed to MUS is 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.”

According to Dr. Shapiro, patient follow-up studies found:

  • “Nearly half of the parents were not happy with the results of the consult visit”
  • “Nearly half [of the patients] received additional treatment for these ongoing symptoms”
  • “More than half sought help from other providers, other than their primary care physicians”

Dr. Shapiro claims that 80-90% of the clinic patients did not have active Lyme disease. However, there is no way to ascertain if the Borrelia burgdorferi (Bb) infection is active or not in a patient. The statement is misleading, if not also inaccurate.

“Quite frequently parents and patients are seeking affirmation that these symptoms are real. And in fact, they are real. They’re just not caused by Lyme disease,” says Dr. Shapiro.

“It’s very clear that simply telling parents that Lyme disease is not the cause of these non-specific symptoms, like fatigue, and various pain syndromes is not sufficient,” states Dr. Shapiro.

Lyme disease patients may be misdiagnosed as MUS, in part due to the poor sensitivity of the two-tier diagnostic test for Lyme disease. Forty-one percent of 104 patients with physician diagnosed erythema migrans rashes were seronegative before and after treatment in a recent study.3

The majority of seropositive individuals on both acute and convalescent serology had a positive IgM western blot and a negative IgG western blot. Dr. Rebman and colleagues from the Lyme Disease Research Foundation in Lutherville explain “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

Dr. Shapiro did not discuss whether he informed parents that there is no test to confirm MUS. Neither did Dr. Shapiro discuss whether he informed parents that there is no treatment for MUS.

Yet, Dr. Shapiro is dismayed to find that half of the chronically ill children sought treatment elsewhere, often with antibiotics. He also suggests that practitioners “figure out ways to try to reduce this healthcare seeking behavior where patients are trying to get treated unnecessarily with antimicrobials.”

As an Internist and Epidemiologist, who has treated Lyme disease patients for the past 25 years, I am reluctant to jump to a diagnosis of MUS in children in the absence of a reliable test and an effective treatment.

Lastly, whether it is our patient or our child, seeking second medical opinions, 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.


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

  • Donna
    11/27/2014 (12:22 am)
    Reply

    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.

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

    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…

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

    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.

  • Grace
    11/29/2014 (1:07 am)
    Reply

    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)
      Reply

      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!

  • H. Tosto
    11/29/2014 (4:33 am)
    Reply

    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”.

  • Dee
    12/21/2014 (8:43 am)
    Reply

    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 masses who follow him like lemmings. Wormser’s emails were leaked and a conversation between himself and a CDC representative revealed that he referred to patients as “Lyme loonies.”. It is sick and disgusting and Iif they think it is a simple disease, then take the challenge. man up and let us all put you in a room full of ticks so you can be bitten. Then we’ll make sure antibiotics are withheld for years as you go from dr to dr trying to find a cure for your symptoms. Then let’s see how you feel. It won’t be u til you or your loved ones get this insidious disease, or you figure out how to make money off of it, that maybe, just maybe, you’ll update those draconian guidelines, and start saving lives.

    My child has encephalopathy of the brain from Lyme. For 13 of the 15 yrs she’s had Lyme and co-infections, she was misdiagnosed by Infectious disease drs, neurologists, orthopedists, an endocrinologist and pediatrician who all said it wasn’t lyme based on CDC/IDSA guidelines. Clinically, she was textbook perfect with her symptoms. We found Dr Jones and did IgeneX testing and a blood culture test and all were positive. She was also IgM positive with Quest. She’s had imaging studies revealing the encephalopathy, hypoperfusion and hypometabolism…and yet every external review weve had to get IV ceftiaxone extended after the initial insurance approval for six months has failed simply because they keep giving it to ID drs to review despite our request for a review by an ILADS dr. They say it isn’t Lyme and never was because of initial tests in 1999 (by a local lab) and 2009 by Quest (that revealed three IgM Lyme bands). They denied the extension because Igenex is “unscientific and not FDA approved,” so therefore, it must be discounted.

    They are horrible human beings, and there is a special place in hell waiting for them.Thankfully, my husband’s company stepped in and will pay for continued treatment. If the company owned the policy outright, the state could have overturned the decision, but since we are self-insured through the company, the state couldn’t get involved, and thus my six appeals. Not only did they say she didn’t have Lyme, but that the medication she is on could kill her because she doesn’t have it!

    This is so traumatizing for me to hear, because it brought me back to 1999, when my daughter was four, and had swollen ankles and feet after being bitten, and got progressively worse being unable to walk because the hip and knee pain was so bad. And all the time as he got worse and worse, we were told it wasn’t Lyme. So if it ain’t lyme causing the encephalopathy, then what is???? They don’t know of course. They are quick to condemn and lacking an answer. ..It is mind boggling to me that they use Shapiros and Wormser’s illogical and irrational methodology and opinions to justify denying appeals. If they truly believe their own lies, then they need to man up and go into a room full of ticks, be bitten and then have treatment withheld for years, as their health declines…if they or their loved ones contracted lyme, or they figured out a way to make money form this disease, then maybe their opinions would change in a heartbeat (you would think, but that would require having a heart and some compassion).

    Until then, they will beat the same tired drum just to disagree with the opposing viewpoints and drs who truly want to help lyme patients. It’s all a sick political game (not to mention that it is way past shapiro’s retirement bedtime, and he is so closed to new scientific evidence).

  • Lynn Shepler MD JD
    01/04/2015 (4:10 am)
    Reply

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

  • Trish F
    01/04/2015 (10:32 pm)
    Reply

    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 place in hell.

    Advice to parents, fight for your children, don’t believe the mainstream medical complex (they lie on almost every front) and what ever you do, do NOT go to an infectious disease doctor!!! And a plea to all of the good compassionate doctors out there, Please do something about these characters, they are giving your profession a bad name and fostering an atmosphere of disrespect and distrust for all your hard work.

    Keep up the fight Dr. Cameron, your one of the good guys!

  • Maureen Falkowitz
    01/07/2015 (5:09 am)
    Reply

    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 entered the hospital and when the medication was titrated down, all his original symptoms returned.

    Through good luck we were put in touch with an old-fashioned so-called “quack” doctor named Isaac Newton Kugelmass, MD who had been a famous pediatrician at one time. His office was at 1060 Park Avenue. If you check out his name, you will find that he wrote twenty some odd books on the care of children. He was an unusual doctor to say the least. He gave our son a combination of drugs including antibiotics and Anavar, an anabolic steroid, along with some other drugs. By the following April, 1976, my son’s pain stopped completely. His other symptoms were also gone. Part of the doctor’s treatments were shots of some unknown substance, which I believed were “gold” shots.

    In the fall of 1975, coincidentally Lyme disease was “discovered” in Lyme, CT. My son recovered completely, thank God, and thanks to Dr. K. My son is now 43 years old and is fully functioning.

    With all the time that has passed, why has the medical profession done nothing to develop an effective treatment for this disease that Dr. K called “Still’s Disease.” I now believe it was babesia, a co-infection of Lyme disease..

  • Phyllis Mervine
    01/09/2015 (9:43 pm)
    Reply

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

  • Kyle
    03/11/2015 (6:30 pm)
    Reply

    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.

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

    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.

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

    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.

  • Robin
    07/16/2015 (10:58 pm)
    Reply

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

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

    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!! 😉

  • Lynn Shepler MD JD
    07/18/2015 (9:03 am)
    Reply

    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.

  • Per Hansen
    07/20/2015 (11:01 am)
    Reply

    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, http://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.

  • Alicia Zuluaga
    03/22/2017 (12:56 am)
    Reply

    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.


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