'Best' hospitals worst for chronic Lyme disease
One man’s experience suuggest that the “best” hospitals in Boston are the worst for recognizing and dealing with chronic Lyme disease.
By Wendy Murphy
Posted Jan. 3, 2015 at 12:00 AM
John’s symptoms began overnight last May. A sharp right-side belly pain followed overnight by facial numbness and pain, diminished vision, loss of short-term memory, profound exhaustion and "foggy" brain.
Severe inflammation then erupted throughout John’s body in the prostate, stomach, colon, both lungs and sinuses. His primary care doctor sent him to numerous specialists, but none found an answer. Weeks later, John lost half his blood volume from GI problems and landed in one of Boston's "best" hospitals.
Countless tests and biopsies came back negative and John was sent home with steroids, which made him sicker. He went to a different Boston hospital and explained his symptoms to a team of neurologists, emphasizing that he was losing his vision and had no depth perception. The attending neurologist replied, "That isn’t necessarily a bad thing; some of the world's best artists don't see things the way the rest of us do; it's why they can make such magnificent art."
John told him to leave.
A psychiatrist then showed up, unrequested, and declared that John’s symptoms must be psychosomatic because there was no medical explanation. Incredulous, John explained that he had no mental health history, had just finished a master’s degree and didn’t see how psychology could explain the overnight onset of severe belly pain, vision loss, and systemic inflammation. The psychiatrist shrugged and offered him Ativan, a drug used to treat anxiety disorders and depression.
He kicked that doctor out of his room, too.
John went home and became his own diagnostician. He soon figured out that his symptoms were consistent with an illness none of the “best” doctors had mentioned: chronic Lyme disease.
John didn’t recall being bitten by a tick, which is not unusual because the bugs can be as small as the period at the end of this sentence and the bites usually don’t produce the tell-tale bulls-eye rash associated with Lyme. A bite from an infected tick leaves behind dangerous bacteria in the form of spirochetes, which lack their own cell walls and quickly make themselves at home inside their host's cells. Once they become intra-cellular, they’re not detectable through traditional blood tests, so lab results are often falsely negative. The Lyme spirochetes then replicate and literally suck the life out of their host's immune system, rendering them weaker over time and unable to fight off other diseases and “co-infections.”
The hospitals John went to refused to conduct any tests that would identify chronic Lyme, so John went to two private labs where his tests came back positive. With results in hand, John then tried to get treatment from a hospital in Boston that claimed to have a world-renowned “neuro-Lyme” program, but an ER doctor there refused to admit him and insisted that the hospital had no neuro-Lyme program. John showed him the hospital's webpage touting the program and begged for help.
Page 2 of 2 - The doctor shrugged and sent John home.
Weeks later, John got an appointment with a world-renowned chronic Lyme doctor named Sam Donta who isn't affiliated with any Boston hospital. He’s been getting better ever since.
Treatment for chronic Lyme disease isn't covered by insurance in Massachusetts. It was that way in Connecticut and New York, too, until a few years ago when new laws were passed requiring hospitals to diagnose and treat the illness. A similar bill has been filed in Massachusetts but it’s going nowhere fast.
While lawmakers refuse to do their jobs, a few brave Massachusetts doctors are trying to help. In addition to Sam Donta, Doctors Arthur Gertler, Carol Englander and Jean Hubbuch do good work, and places like Groton Wellness, Visions Healthcare and the Central Mass Lyme Foundation are excellent resources. The website of ILADS, the International Lyme and Associated Diseases Society, is a great starting point for people who don’t know where to begin, and the Internet is full of information and support groups.
It might help “inspire” the Legislature into action if someone could organize a protest of people in hospital gowns holding signs that say something like, “It’s a crime not to treat Lyme.”
A little bit of shame for the world’s “best” hospitals could be just what the doctor ordered.
Wendy Murphy is adjunct professor of law at New England Law|Boston and a television legal analyst. A former prosecutor, Murphy specializes in the representation of crime victims in civil and criminal litigation. Her first book, “And Justice For Some,” was released in paperback in 2013. Read more of her columns at wendymurphylaw.com. Wendy Murphy
No comments:
Post a Comment