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Living With Lyme: Your Feedback

BOSTON — The hot summer weather has probably driven you outdoors, and maybe into tall grass — grass where ticks live that could carry Lyme disease.

If you tuned in last week you would have heard our series, Living with Lyme. We received a lot of reaction to the series and wanted to share some of it with our listeners.

WBUR’s news director, Martha Little, who produced Living with Lyme, joined WBUR’s Morning Edition to discuss some of the listener feedback on this controversial topic.

Please follow our community rules when engaging in comment discussion on wbur.org.
  • Bbtmwkplus

    Just about a year ago I was camping in Yellowstone National Park.  I got bit by something unusual. Got dizzy and nauseous. So I meditated and that went away. Three weeks later i could not get up from the couch, I thought I was just stressed and tired so there I sat for a week then came the fever and then severe agonizing pain in my legs, shoulders and arms. I was unable to move, eat or do much of anything. I went to the doc and went straight to the Infectious Disease folks. My I.D. doc put me on a two month regimen of Dox. I had so many blood tests, cat scans, x-rays and stuff. They found a couple of other things wrong with me that I had no idea I had. It was a gruesome time. Most everything was treatable with meds. Now, almost a year later I have most of my functions back including my memory. The crazy thing was that I never tested positive for lymes but the symptoms were classic. God Bless my docs for jumping in full force. One of them is an author and retired I.D. doc. 

  • LouiseInCambridge

    First I want to thank WBUR for the series on Lyme .  It is so important to raise awareness of this illness. I must confess thar Dr. Drapkin’s comments enraged me. I have a close family member who went to Newton Wellesley  Hospital for treatment of a mysterious constellation of symptoms including widespread pain and serious cognitive impairment in a young man. After his first round Elissa Lyme test came back negative no one would order the Western Blot which ultimately diagnosed him many many months and difficulties later.  No fewer than 15 NWH docs failed to diagnose him or diagnosed him incorrectly as having fibromialgia or depression.  It was  Dr. Drapkin’s infectious disease colleague who said he could not possibly have Lyme because of the lack of a bull’s eye rash and cancelled the scheduled spinal tap which might have diagnosed him months earlier and did in fact confirm the diagnosis much much later. We are grateful to a small brave group of open minded physicians who are willing to treat this debilitating disease which so much of the Boston medical community denies exists.They are treated as pariahs and must work almost in obscurity.

     

    • TL4

      I too was sent to Dr. Drapkin’s colleague, with disseminated lyme WITH ongoing bullseye rashes for 5 years.  I also had a CDC positive test at this point.  (Negative several times in the past.)  He took a photo of my rashes to share with his colleagues, did some blood work and called me back to tell me what I had.  “You have a mysterious illness and I don’t know what it is, maybe you should go to dermatology and they could possibly help you.”  I have been ignored, and sent from one place to another.  After finding an LLMD, I started IV treatment and somehow those rashes began to get lighter.  The insurance cut me off and somehow those rashes have gotten dark again.  This is a wealthy man’s disease and unfortunately a lot of people are suffering because of it!

    • Lbmdux

      We are grateful to a small brave group of open minded physicians who are willing to treat this debilitating disease which so much of the Boston medical community denies exists.  
      Louise – I am very interested to know who these physicians are – can you share the names/practice?    

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

    After suffering a Lyme disease epidemic, residents of Monhegan Island Maine wisely ended it by eliminating the deer.  Unfortunately, animal rights activists prevent the rest of us from doing the same thing.  They do not care about human health and safety. As noted in The Boston Globe 7/7/12, when deer herd thinning was necessary to prevent soil erosion and degradation of the water supply at Quabbin reservoir, deer-huggers chained thenselves to radiators in MDC offices.  Currently they spread lying pro-deer propaganda falsely blaming the epidemic on mice, acorns, lack of foxes, etc.  They believe deer have the right to spread the ticks which ruin people’s lives.

  • Batikquilt

    Having two children who were misdiagnosed over the years by no fewer than 20 doctors, I am saddened, overwhelmed, and disgusted.  Their young lives have been put on hold due to poor testing methods for Lyme, symptoms unrecognized by the so-called specialists,  and ultimately, the “Three B’s”:  borrelia ( Lyme disease), bartonella, and babesiosis, three horrible infections that are very difficult to treat in their late stages.  Now thier lives are filled with pain, nausea, fatigue, poor cognitive ability, and a slew of meds and supplements.  It is tough to see one’s children suffering with any disease, but this one seems to leave so many victims undiagnosed for way too long.  Imagine having doctors telling you, as a young adolescent, that  you are making up your symptoms for attention.   That can really do a number on you!  Now my children are slowly improving thanks to two very special and dedicated ILADS (google it) doctors to whom we must drive over three hours for treatment.  Neither of my children had a bull-eye rash, but do have CDC-postive Western Blots from Igenex Labs.  There has to be an easier way to test people regularly for Lyme.  Dogs get tested every year at the vet.  When are we humans going to catch up?

  • Rebe

    My daughter’s Lyme disease has
    progressed to her central nervous system, neuroborelosis. She has
    suffered too long at the judgmental whims of doctors. Her neurologist
    has labeled as having “conversion disorder” meaning: it’s in her head! She is in incredible pain
    every day, her pcp STILL doesn’t believe she has Lyme even after 5 years
    of negative testing on just about every organ in her body.

    She
    had her gall bladder and appendix removed in 2011. Her thyroid is
    slowed, menstrual cycle has stopped (2 years now) due to her body
    shutting down from Lyme bacterial infection. She is unable to focus and
    her once brilliant mental acuity is now just not there. I blame the all
    the pediatric and adult doctors she had for years who claimed she needed
    psychiatric therapy, saying her illness is emotional.

    Malnutrition
    brought on by constant inability to keep food down (vomiting and
    diarrhea) has resulted in the loss of several teeth. Keep in mind she is
    only 22 years old. The emotional turmoil of having a disease that is
    not recognized by mainstream doctors in an area that is endemic is
    overwhelming.

    There must be something that can be done for her legally

    The most recent Quest test came up with the 41 band reactive for Bb antibodies in her blood, finally. BUT because only one band was reactive, her pcp doesn’t believe she has Lyme. How’s that for modern medicine. Yes, I am angry.

  • shobud

    Apparently Poughkeepsie has a higher standard of journalistic integrity
    than Boston.

    http://www.poughkeepsiejournal.com/article/20120819/WATCHDOG/308190050/Lyme-Disease-Antibiotics-fuel-debate

  • shobud

    A new statistical review calls into question studies that have been taken as proof that antibiotic retreatment for chronic Lyme disease is futile. That misunderstanding has led to medical guidance that discourages retreatment and insurance coverage for it. Instead, the authors of the review suggest, the proper reading of the studies and their data is that they prove nothing.http://news.brown.edu/pressreleases/2012/08/lyme

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