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

May 24, 2019

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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.

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.

Comments

23 responses to “Yale doctor says children don’t have Lyme, but medically unexplained symptoms”

Phyllis Mervine

01/09/2015

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

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Maureen Falkowitz

01/07/2015

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..

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Trish F

01/04/2015

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!

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Lynn Shepler MD JD

01/04/2015

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

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Dee

12/21/2014

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).

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