WBUR

The Complexities Of Diagnosing Lyme Disease

BOSTON — On Memorial Day weekend, 15-year-old Zachary Tenreiro ran back and forth to the beach through tall grass around his grandmother’s house in Wareham. Three weeks later, Zachary’s legs hang limply off an exam table as his pediatrician, Jennifer Hyde at Westwood-Mansfield Pediatrics, takes notes.

“So can you tell me when the fever started?” Hyde asks, looking up from her keyboard.

“Last night,” Zachary mumbles. He’s groggy after a near sleepless night when his fever hit 104.6.

“Did you have any cold symptoms or anything before the fever started?” Hyde asks as she moves quickly through the checklist of symptoms Zachary does not have: no congestion, vomiting or diarrhea. He’s not achy and does not have a stiff neck.

Zachary Tenreiro with his mother Maria Tenreiro and her red "boys medical" binder. (Martha Bebinger/WBUR)

Zachary Tenreiro with his mother Maria Tenreiro and her red “boys medical” binder. (Martha Bebinger/WBUR)

“Do you live in any area where there are deer or ticks?” Hyde says, switching tactics. Zachary’s mother Maria Tenriero jumps in.

“We were down on the Cape where there’s deer and ticks,” Maria says, adding that the family always checks for ticks.

“But no tick bites that you noticed?” Hyde wonders.

Maria shakes her head. “I don’t think to check the hair because he’s got so much hair. I don’t even know if I’d see it?”

Zachary hadn’t notice a tick or a rash. Hyde tells Zachary he could just have a virus, “but typically, if we have fever and headache, not very strong cold symptoms, we usually do look for the Lyme, especially if you were somewhere where there were ticks.”

“And my other son found a tick on his sock,” Maria offers.

Hyde sends Zachary for a blood test. If he has Lyme, his blood work should show that he’s producing antibodies. Tests for Lyme don’t detect the disease itself. They look for Lyme antibodies, proof that the body is or has been fighting the disease. A few hours before Zachary came in, Hyde had a patient with the telltale bulls-eye rash. She put that boy on antibiotics without ordering a Lyme test.

“There’s no point in testing because the test is unreliable,” Hyde explains. “The Lyme antibodies haven’t formed yet, it’s too early.”

But Hyde says that for Zachary, the test makes sense.

“With fever this high your body is making lots of anti-Lyme antibodies and it should be there,” she says.

That’s if Zachary has Lyme. Hyde offers to start antibiotics right away but Zachary’s mother declines.

“I get very nervous about antibiotics,” Maria says. “We don’t use them unless we absolutely have to.”

Maria says she’ll fill the prescription if Zachary’s test is positive.

“And if it’s gonna be present, it will, right?” Maria asks. “There’s no way to miss it through blood?”

The answer to that important question is complicated. It depends on when you get the test, says Dr. Philip Molloy, the medical director at Imugen, a Norwood lab that specializes in testing for tick-borne diseases.

“You can’t miss it when it’s late,” Molloy says, but “in the first weeks you can be fooled.”

Molloy, who is also a rheumatologist, says doctors can be fooled for up to two months after a patient is infected with Lyme because some antibodies show up right away and others take longer to respond to a bacteria, such as Lyme.

“It’s not a reflection of a poor blood test,” Molloy says. “It’s a reflection of, you haven’t made antibodies yet. You can’t find what isn’t there. Your body’s immune system takes a week or two to digest this germ and activate its immune system and produce the antibodies that are diagnostic.”

Testing for Lyme is a two-step process. The second test, known as the western blot, may be negative even once a patient has a fever or headache if the patient’s antibodies are slow to respond. So Molloy and several infectious disease doctors interviewed for this story recommend retesting patients whose symptoms persist.

The western blot test produces a strip that Molloy says looks kind of like a bar code.

“So there are some weak positives here,” Molloy says while looking at western blot strips. “This test, and this test, can only be interpreted in the context of a patient and their EIA results.”

Dr. Philip Molloy reviews a western blot test at Imugen, a lab in Norwood. (Martha Bebinger/WBUR)

Dr. Philip Molloy reviews a western blot test at Imugen, a lab in Norwood. (Martha Bebinger/WBUR)

The EIA is the first of the two-part test for Lyme. Molloy slips into the medical language that many patients with Lyme learn to speak. His point in looking at these strips with some strong dark bands and some bands that are a faint grey is that knowing when to test for Lyme and how to balance test results against a patient’s symptoms can be tricky for doctors.

“There’s room for being led astray or being confused and there’s so much a paranoia from my patient’s who spend time on the Internet that they sometimes just throw their hat in the air and say, ‘I want treatment,’ ” Molloy says with some frustration in his voice.

Some patients who are sure they have Lyme even though their tests continue to come back negative seek out what they call “Lyme-friendly” labs. These labs don’t follow mainstream medical diagnostic standards, but patients say they detect Lyme that mainstream labs miss.

Several patients we spoke to for this series directed us to Nick Harris at IGeneX in California. Harris says it’s wrong to suggest that he diagnoses Lyme; that’s the role of a doctor. But Harris says he can help patients because “most labs are looking for early Lyme. Our testing goes further and looks at patients infected maybe years before, so it’s a criteria difference.”

One patient, who says he got very sick before getting a clear diagnosis, is hoping for an entrepreneurial solution.

David Roth, a real estate executive in New York and co-chairman of the Tick-Borne Disease Alliance Board, has put $50,000 of his own money into a partnership with the nonprofit X PRIZE Foundation, to help fund a competition for an early stage Lyme test.

The organization that would decide what test to recommend doctors use, the Infectious Diseases Society of America, says it supports development of new tests and would review the results but stresses that current tests are accurate.

Zachary Tenreiro is still sick. His fever just broke Thursday, seven days after it spiked at 104.6. He developed a full body rash and the headaches continue. Zachary’s Lyme test was negative, so Hyde ordered tests for two other serious tick-borne diseases: babesiosis and anaplasmosis as well as mono and a few other possibilities. Hyde and the Tenreiros are waiting for the results.

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  • Michelle

    FYI, only two labs in the country actually have a human look under a microscope so the computer run tests miss the diagnosis ALL the time. This could absolutely still be Lyme. 

  • https://identify.us.com IdentifyUS

    Some physicians treat presumptively every time a patient finds a tick, and others wait for test results of the patient’s blood. The former can quickly and inexpensive ablate the infection, but it is not without risk. The latter may incur weeks of waiting for a test result, and though it can reduce unnecessary treatment costs and risks, it may burden the patients who actually are infected. Another option is to have the ticks evaluated. Ticks need not necessarily be tested for infection. Merely confirming their identity (deer tick or not) and judging the extent of engorgement can offer rapid and effective insight as to who may best qualify for treatment. The evaluation task can best be done by an expert examining the ticks directly, or good digital images, thereof.  Richard Pollack, PhD

  • Brubru2452

    Zachary, get on those antibiotics! The longer you go untreated the longer the symptoms will last. I had the same situation this year. Fever, headaches, and the full body rash. First test was negative, a week later I took a second test…positive. I took the 21 days of antibiotics but still having issues with joints. Stop waiting for a positive result… you may not get one, and then the damage will be done and harder to reverse.

  • http://www.facebook.com/people/Tessa-Mccall/730211001 Tessa Mccall

    Here is how accurate the Western Blot test is- Tested August 2008 negative not enough bands- One year later after treatment CDC positive – and I have continued to test CDC positive over the course of three years.  I didnt see a tick either – The bacteria has disseminated into my tissues and organs and has eluded my immune system.  It was the antibiotics and my immune system that finally started driving them out.  Find yourself a good lyme doctor and get tested for co-infections because its no longer just the bacteria that causes lyme you may get but a host of other things from the bite.  Enough is enough of this on going controversy about lyme disease – its real in chronic form.  If you dont see the tick you are in trouble in need the medical advice of a Lyme Literate doctor

  • Manduhai

    I had a bulls eye rash in 2002.  Was treated for 2 weeks but the infection kept moving: initially trachea, sinuses, ears, eyes, then trigeminal nerve, joints, dissemination throughout  my nervous system, fall for unclear reasons and broke two bones, cognitive dysfunction, thyroid on the blink, then adrenal failure.  I went from doctor to doctor and couldn’t get help.  I was sick for nearly two years before anyone even suggested testing.  First test negative but my adrenals were failing.  Treated adrenals.  Tested again: CDC positive on both IgG and IgM.  But in Boston Chronic Lyme doesn’t exist so I had to leave the state.   Treated with great improvement but still lingering symptoms.  Every time I got an infection I went careening backwards.  After 5 years of this tested for more organisms.  Three species of borellia plus erlichia and bartonella.   The complications of this are so much greater than the simplistic model we are offered for the testing and treatment of Lyme.

  • shobud

     How many parents are following this? How many of you wish you had taken your children to Yale so they could participate in this study by Dr. Steere?

    http://www.nejm.org/doi/pdf/10.1056/NEJM199107183250304

  • Jeny Kherkher

    There is a new Lyme culture test that is now available.  It was developed by Joseph Burrascano and available through Advanced Labs.  We are using it alot and seeing a lot of growth in patients with chronic illnesses like Fibro and CFS.

    • Mccall2709

      W?hen the IDSA will try and attack this test. CDC will di what they always do and claim false positive. According to cdc western blot negative is negative. A postive is false positive. REALLY?

      • KMDickson

        The CDC staff are criminal *participants* in this crime.  Their patents with SmithKline in Europe (1992) demonstrate that the CDC knows that there are 2 kinds of Lyme: the HLA-linked hypersensitivity response (Steere’s Bad-Knees-Disease) and EVERYONE ELSE with the immunosuppression/New Great Imitators outcoms.  See http://www.actionlyme.org for the links to those CDC patents.

    • Solasdesigns

      I’m grateful for this test as it was what truely confirmed what my current Doctor intuitively new after looking at all my symptoms.

    • KMDickson

      Burrascano does not know what he is talking about.  The only scientifically valid antibody testing for Lyme or Relapsing Fever is the Flagellin Method.  This method detects at least 94.4% of the cases.

  • Alexander Davis

    Given the fact that this disease is spreading so fast and that many people are missing the important early treatment, one wonders why there is not a greater effort to reverse the deer epidemic which brought us this plague.  Dr. Thomas Mather, a panelist on yesterday’s program, pointed out that deer now look in his window at home.  He calculated that ticks dropped off from each deer/year produce 450,000 eggs.  These develop into the larvae and then poppy-seed-size nymphs which feed on mice or us.  Most people are infected by nymphs and thus not noticed.  Getting rid of the deer breaks this cycle.     

    • KMDickson

      Agree.  The deer are the problem and not mice.

  • Solasdesigns

     I have gone thru misdiagnosis for many years because of a mainstream american medical community that won’t look at Lyme or tells you that you are cured after a short course of antibiotics. I do not have MS, ALS, Parkinson’s, Fibro, or Lupus. Those diseases that every doctor I went to diagnosed me with. I have been living with this for more than 5 years and I am now in late stage chronic lyme that has settled in my central nervous system. The sad part is that I was bit during the 12 years I lived in NY’s Mid-Hudson Valley & my NEW YORK doctor missed it.

  • KMDickson

    The falsified testing for Lyme is nothing more than classic research fraud.  “Lyme Disease,” they claim (the disease definition was falsified at the 1994 Dearborn, MI, conference), is “only an autoimmune arthritis in a knee,”… because the real name of the disease is Lyme Relapsing Fever or Lyme Borreliosis.  The nature of the relapse is antigenic variation, meaning vaccines and test kits are a ridiculous idea.   The controversy is research fraud or a homicide charge.
    Yale owns a scientifically valid way to detect Lyme which is 94.4% accurate and 100% specific (US Patent No. 5,618,533) but they did not use this test to qualify LYMErix, because they knew LYMErix did not prevent Lyme.See more at http://www.actionlyme.org/index.htm

  • shobud

    Drs Sam Donta, Brian Fallon, Richard Jacobs, and Matthew Liang discussed  challenges for clinicians in the diagnosis of and the management of tick-borne diseases.

    Dr Donta is notable for being the dissenting voice on the contested IDSA guidelines. His insistence that those guidelines include chronic lyme led to his exclusion from the panel so that they could achieve “concensus”.

    Dr Fallon is from the Columbia University Lyme and Tick-Borne Diseases Research Center, which as some have posted previously is a possible resource for patients trying to make sense of this morass.

    Dr Jacobs speaks about pediatric manifestations of Lyme and what it means to have a chronic case in a child.

    Dr. Liang lives up to Osler by saying his gold standard is what the patient tells him. Beyond that, during the question and answer segment he delivers the simplest and best colloquial assessment of where we currently stand that I have seen from a respected physician. When asked about the effectiveness of current diagnostic strategies for late stage lyme he replied “they suck”.  (56:10)

    Sometimes the answer really is that simple.

    http://vimeo.com/24748049
     

  • Dakini7722

    Adjuncts to medical treatment can come from herbs and supplements.  www.herbsforlyme.com   offers some good products.  

  • http://profile.yahoo.com/FMC567LV2V5THDC7AWDJZSZ3NM Alexander

    At the panel discussion Rep.
    Linsky pointed out the power of the so-called animal rights lobby which opposed
    decreasing the deer population to control Lyme disease. In 1930 there were
    300,000 deer in the US. Today there are 30 million. We have lost our rights. We
    can no longer enjoy nature, and we watch people fall one-by-one from Lyme
    disease. We are fencing ourselves in and dousing ourselves with potentially
    harmful pesticides.  Ticks from just one
    deer produce 450,000 tick eggs per season as reported at the panel discussion.
    No wonder Lyme disease is out of control. And these deer ticks carry other
    diseases as well. On Monhegan Island Maine, there was a Lyme epidemic but it
    was stopped by eliminating the deer. The deer lobby tries to blame the mice,
    but the adult ticks necessary to perpetuate the species will not feed on a
    rodent.

  • LymeTickTest

    Hi I just
    wanted to let you know that there is finally an at-home tick testing kit that
    allows you to test with great accuracy the presence of the Lyme Disease bacteria
    in ticks. It is a great early warning tool! Please contact me at 1 855 TICK TEST
    or lymeticktest.com for more
    information.

    Dan
    Wolff

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