June 26, 2012 | 6:01 PM |

Lyme Disease: A Patient’s Story, A Doctor’s Response

FILED UNDER: Medicine/Science, lyme disease

Barbara MacLeod at home in Kittery, Maine (Jesse Costa, WBUR)


If there were no patients like Barbara MacLeod, no one would care about Lyme disease, and WBUR would not currently be running a week-long series about it. It would just be a summer fever and rash. The trouble is that among the many people infected with Lyme disease, some — like former NECN anchor Barbara MacLeod — remain long undiagnosed and they can get very sick, for a very long time.

No one denies that Lyme disease can have long-term effects. The controversy arises around whether the Lyme infection can persist after antibiotic treatment, and whether longer-term antibiotics help. This is the nub of what some call the Lyme Wars, pitting some patients and a contingent of doctors against mainstream medical findings and guidelines. And today, we got a taste of the wars on WBUR’s air, with Barbara MacLeod’s harrowing story on Morning Edition and then, on All Things Considered, the beginnings of a response from Dr. Mark Drapkin, an infectious disease specialist at Newton-Wellesley Hospital and a professor at the Tufts University School of Medicine. On Friday, we’ll hear him explain why he believes Lyme is not a chronic disease, but why people can have lingering effects from the infection.

The Lyme wars tend to get nasty. Barbara MacLeod was brave to tell her story, and Dr. Mark Drapkin is courageous to represent the mainstream infectious disease specialist’s point of view. I can’t wait to hear his fuller interview on Friday.

  • http://feedmedaily.blogspot.com/ Julia

    I remain optimistic, but goodness knows why. In 2001 I was diagnosed with Lyme. In 2008 I was diagnosed with MS. Cause and effect? While undergoing diagnostics in 2008, I tested positive for Lyme. Because of that, MS wasn’t even on the radar. And the thing is, even 2001, my Lyme symptoms were so unusual that it took a long time for THAT diagnosis. Not to mention that my MS is probably a result of a period of anorexia in my past. All of this is just ‘The Story of My Body’ and what it all comes down to is this: I know for sure that our BODIES are more complicated than our DIAGNOSES. I remain optimistic, both about Boston-area doctors and about my long term health.

    Writing has saved my life: http://feedmedaily.blogspot.com

  • Dr. Nixon

    Perhaps if the conventional medical community could find an effective treatment for this (not so rare) chronic, painful, and disabling disease affected patients would pursue something other than long-term antibiotic therapy.  But its so unhelpful for the healing profession to insult these patients by suggesting something akin to hyperventilation (or insanity) as the cause of their condition.  In their hubris, doctors who have no idea what is causing the situation or how to treat it would rather pretend it doesn’t exist.  This excuses them, in their own minds, from the responsibility to do something about it.  This is an example of a psychological concept known as cognitive dissonance where doctors find a way to rationalize the fact that there is an illness they haven’t the foggiest idea of how to treat and so they blame the victim. 

  • VJ

    Lyme is such a controversial topic that running a 12
    min story about “chronic Lyme” on the second day of the series is
    going to swamp whatever else you had planned.

    Whether or not “chronic Lyme” exists – I am
    an MD in the “no” camp – its critically important to highlight how
    RARE such a syndrome is. Lyme, like most infectious diseases, has a “Bell
    shaped” distribution of symptoms after infection. There are many people,
    perhaps well over 50% or are infected with Lyme (have positive antibody tests)
    but never have had, and never will have, ANY symptoms of Lyme. Then there is
    the group that comes to medical attention with acute Lyme or well established
    “late” Lyme symptoms which is another large chunk of patients. Then
    there is a VERY SMALL group of patients who present with “chronic
    Lyme” symptoms usually diagnosed, as in your story by “special
    doctors” with “special understanding.(can anyone think of another
    infectious disease that requires such specialness to diagnose ?).

    I believe that it raises the anxiety about Lyme
    dramatically when the main stories in the media are about the sickest people -
    it would be like profiling a women who’s breast cancer has failed all
    treatments as an example of “breast cancer.”

    Get an entomologist and epidemiologist on to talk on
    the air about how FEW ticks CARRY Lyme (1 in 100 ??) and how vastly over
    diagnosed Lyme infection is in many parts of the country where the tick vector
    barely exists and there are no infected ticks.

    Profiling one unfortunate person in such detail may
    lead to increased anxiety (a well documented illness with significant health
    consequences) in many more.

    .

    • Carey Goldberg

      Dear VJ — This is such an excellent idea, to put that piece into perspective. I’ll start the reporting, but do you have any pointers about where I might find the data on what percentage of Lyme patients end up with long-term sequelae? Thanks so much for writing — Carey

    • Alexander Davis

      The Cornell web site states that 30% of deer ticks are positive for Lyme. 

    • annie

       “can anyone think of another infectious disease that requires such specialness to diagnose ?).” Hepatitis C. Many people are walking around symptom free but still have a very serious illness.  Hows that?

      • Guest

        But testing readily reveals the diagnosis.  That’s not a good example at all.

    • Strumma

      VJ needs to look at some FACTS and not state something with a question mark ( 1 in 100 ??)  Where I live, (southern NH) over half of the ixodes scapularus ticks are testing positive for Bb.  In one county in NH the percentage is 85% so 85 in a 100, using his terminology. 

      The reported incidence of Lyme disease is going to continue to rise as 2 things happen: 1) Infected tick populations increase and 2) People who have been mis-diagnosed for years with other ailments eventually have the proper testing and diagnostic work up that shows they have Lyme disease.

      After almost 2 years on ABX and a year on IVIG, I am starting to get feeling back in my legs.  At one point I needed a walker to get around, then a cane for quite a while.  Now I am walking on my own.  I feel that had I not gotten treatment when I did, I would be confined to a wheel chair right now.  My Primary Car doctor agrees (and he’s the one who missed the diagnosis at first)  When I asked him what my diagnosis would have been had the Lyme disease and several co-infections not been recognized he said that I would have been told I had MS or ALS.

      VJ – there are a LOT of folks with debilitating effects from Lyme disease.  You will come to understand this if you or a friend or family member ends up with it.  Know anyone seriously impacted by MS, ALS, Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Arthritis?  It is a safe bet that at least some of those are un-diagnosed Lyme disease.

  • Nova Scotia Lymie

    It is interesting that this would pop up in my Google Alerts tonight after spending most of the day in an Emergency room of my local hospital for an issue that turned out to be nothing but which caused the attending Dr. to lecture me about my ongoing treatment for Lyme disease and Bartonella.  He suggested that I should read an article on Hyperventilation Syndrome as perhaps that is what I have instead of the clinically diagnosed tick borne diseases.  It was eye opening to talk to a Doctor so sure that all Lyme can be “cured” in a short dose of antibiotics and that if it isn’t – it’s not Lyme!  I read about it all the time, but this was my first, first-hand experience with it.  Many Doctors that I have come across don’t know much, if anything about tick borne illnesses, but this one seemed to think he knew it all – scary!