Madison Area Lyme Support Group

This is a story of medical ignorance: How an infection was allowed to fester even when safe, generic drugs could have stopped it.

No, this is not about covid-19. This is a story of Lyme disease.

Before a pandemic came along, Lyme disease was among the most controversial and, in late stages, abysmally treated infection in medicine.

As covid wanes, the tick-borne illness is still all those things. That is why a nineteen-year-old woman, who represents chronic Lyme sufferers worldwide, is suing a dozen doctors, a pediatric practice, and three hospitals in New York City for medical malpractice.

If anybody can change the image and practice of Lyme disease, it is Julia Rose Bruzzese of Brooklyn, the girl in a wheelchair who met the Pope on an airport tarmac at the age of twelve in hope of a miracle. Maybe, just maybe, she will get it.

First, her odyssey.  (See link for article)

SUMMARY:

• Julia had a glaring EM rash the doctors simply ignored.
• This error of ignorance was repeated over two more years and she was accused of making it all up.
• When her dad suggested it might be tick-borne illness he was treated like he was using profanity.
• Julia’s lawsuit contends that the continued refusal of doctors and hospitals resulted in her life in a wheelchair and she is seeking judgement and financial damages that would be fair, adequate and just.
• Her father has fought battles for Julia before when attempting a medical insurance appeal.
• Author of the article, Mary Beth Pfeiffer, has interviewed scores of others with similar stories of Lyme ruin and denial.
  • Pfeiffer recounts how since the first treatment “guidelines” in 2000, the disease has been controlled by a small number of well-connected but dogmatic researcher-physicians in the IDSA.
  • The latest 2020 IDSA guidelines acknowledge that some symptoms are disabling and persist in 10-20% or more of patients a year after treatment but dismiss this as “subjective” and not verifiable.
• Due to this medical controversy another group of doctors has formed the International Lyme and Associated Diseases Society (ILADS) which faults the IDSA for using low-quality and flawed evidence behind their entire paradigm.
  • This group still insists upon using a 30 year old diagnostic test that is wrong some 40% of the time with early infection and anywhere from 70–86% in late infection.  Yet this test is followed like the Rosetta Stone.
  • This group also recommends longer prophylactic antibiotics after tick bites and initial infection, and retreatment for persisting symptoms.  Due to this approach, Julia finally felt her feet for the first time in months.
• Julia experienced extremely abusive situations by doctors throughout this journey including gas-lighting, taking away her wheelchair to see if she would get up to use the bathroom, poking prods into her lifeless legs when she slept, waking up to a large group of doctors looking down on her to observe a supposed case of “conversion disorder,” being dragged along a hospital hallway, and taking all her weight but then dropping her despite her cries of pain.
• The family has had financial troubles due to this.
• Julia has faced frightening litany of symptoms that have progressed and worsened over time due to lack of treatment. She has had GBS, POTS, distended bladder, cognitive impairment, vision and hearing difficulties, insomnia, atrophy, migratory joint pain, encephalitis, seizures, severe fatigue, osteopenia, and many other problems.
• The defendants have denied all claims in the lawsuit, filed in March 2021.
• Julia made global news when she sought a blessing from the Pope in 2015.
• Finally able to obtain testing, she now had evidence of 5 infections: Lyme, Babesia, Tularemia, and Bartonella and received treatment which helped but did not cure her long-ignored condition.
• Julia’s story is now chronicled in a critically acclaimed documentary that is now screening around the country.
• The ignorance being experienced is largely to a one-size-fits-all medical model which is a huge ongoing problem.
• While Julia’s lawsuit is a year or more from trial, another trial is coming in May for a “wrongful death” in a young man who had a negative test but ended up dying from Lyme carditis.  A case report in Cardiovascular Pathology journal two years later documented the damage to his heart. There, in color, were corkscrew-shaped Borrelia burgdorferi spirochetes, the causative agent of Lyme disease. Similarly to Julia, he was not treated with a round of antibiotics that likely would have spared him.  Journal articles continue to minimize the severity of tick-borne illness by insisting that they are self-limiting conditions.  Therefore, doctors are lazy and apathetic toward a complex illness that has and will kill or maim a good number of patients.
• A false narrative also continues to insist that people are over diagnosed with Lyme due to supposed false positive tests.
• Despite stories like this (and thousands more) nothing has changed in Lymeland. 
• What’s the answer?  Good question.  Pfeiffer thinks maybe big money payouts will help our plight. Recently a Maine lawsuit awarded a family 6.5 million from a hospital and doctor in the Lyme carditis death of a twenty-five-year-old man in 2017.
  • The lawyer who won the case is the same lawyer in Julia’s case as well as in the other Lyme carditis death.  He has yet to earn a dime.  How many lawyers will fight for sick Lyme patients without a living wage?  Food for thought.
• Like all good dads, Julia’s father is worried for her future, but Julia’s greatest weapon continues to be her optimism.  She is in pre-med, paints, crochets, bakes, and is a make-up artist.