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As you likely have heard, the diligent scientists at the Mayo Clinic have discovered a variant on the organism that causes Lyme disease, aka, Borrelia burgdorfei (Bb). This new spirochete was found when a lab test called a PCR was done on a young boy with profound weakness, fever, and a rash. But the test showed a mysterious organism similar to but different from the Bb bug transmitted by deer ticks. A new species!

Dr Bobbi Pritt told the Mayo story as it unfolded today at the Lyme Disease Association conference in St Paul about this new pathogen announced last year.  The drama, the discovery, the naming of the new pathogen, the drama, the analysis of specimens (>24,000) from all over the country to see if this bug existed outside of Minnesota or Wisconsin, the drama…did I say The Drama?  Although certainly we should accord Dr Pritt and her team all of the deserved accolades associated with scientific discovery, the irony of the Mayo Clinic offering a shred of attention to Lyme disease is, well, pretty rich.

Most of the physicians who care for those unfortunate enough to have developed the chronic form of Lyme in the Midwest have had the very negative experience of a Mayo Clinic “consultant” telling a patient that “it is all in your head”.  In fact there are numerous stories of patients being referred to Mayo for a mystery illness — fatigue, pain, brain fog, mood changes, etc — tested with standard methods for Lyme disease, and being told that they simply do not have it.  The joke actually is that if you even mention the word, “Lyme”, once there, you will be escorted out.  Rude does not begin to describe the collective experience of many patients seen at Mayo who later are diagnosed with Lyme disease.

But here we are with the Mayo pedagogy about Lyme.  The questions and comments from the audience to the Mayo Dr were short and polite.  No one here was about to exhibit the kind of boorish behavior to which Lyme patients are treated routinely in Rochester.  The speaker explained her thoughts on the “gold standard” of diagnosis for Lyme disease:  erythema migrans rash, acute illness, fever, and a + standard 2 stage test for Bb.   In polite silence there were no further questions.  But I thought perhaps instead of naming the new pathogen about themselves (Mayonii), they might have called it Borrelia naivete.

7 Comments on The Mayo Clinic takes a Lyme disease bow…

  1. I do believe the name you mentioned certainly is appropriate! Before while waiting to get an appointment with them I was told by them that they were not going to offer me an appointment as they did not feel that they would be able to help me!!

  2. My home hospital partner of Mayo is also strictly Mayo belief system. Time for teachings to change and perhaps. Lyme Corp was designed and diploid by IDSA/CDC as I understand it to down play the new and now only published Lyme treatment guidelines at the NGC.

  3. A neighbor was seen at Mayo often over years for a worsening neurodegenerative condition including “Parkinson’s Disease”, but of course, NOT Lyme. At the free autopsy Mayo offered they discovered in his tissues, you guessed it, Borrelia (Lyme Disease). “Ooooops, sorry, too late; we TRIED to help him.” The frank 30 year denial of Lyme and patient’s suffering is not just unethical, it’s inhumane (why do we keep PAYING for this?). Some day Mayo (and all the others) will get off the IDSA/CDC/BCBS horse, step up to the plate, and actually CARE for these people. When asked about Mayo’s outdated position on Lyme diagnosis & treatment, Dr. Bobbi Pritt’s sheepish reply at the LDA conference was , “I don’t see patients.” The audience was too polite to rake her over the coals, since she clearly wasn’t taking the fall for Mayo’s stance on Lyme Disease; but it was the most telling moment of the whole conference.

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