By this time he and other clinicians were throwing everything they had at this disease including intravenous drugs like Rocephin and Vancomycin only to find that patients were often refractory or relapsing months later.
Dr. Masters was diligent in his approach to this disease and in addition to trying to document the tick bites, culture the bacteria and collect patient histories he went one step further.
He saved patient’s blood samples, CSF samples, and skin biopsies, and he also had the patients save the same samples at their own homes in their own freezers. This turned out later to prove to be a wise decision.
Dr. Master’s troubles with the local health department continued for years and culminated in the seizure of hundreds of his “Lyme-patient’s” blood samples and skin biopsies from his office freezer containing patient’s frozen samples.These seized samples were promptly and without explanation taken by the state and destroyed.
As with other Lyme rebels and mavericks who insisted on taking a pathology perspective about Lyme disease rather than a serology based perspective, Dr. Masters treated Lyme disease aggressively and against the recommended protocols that was used and advocated by Yale Medical and the Infectious Disease Society of America IDSA.
It seemed just a matter of time until he would somehow be sanctioned and silenced, but then Ed Master’s patients stepped forward.
Ed Masters insisted that all of his patients save duplicates of the samples that he stored in his office. The patients would keep them at their own homes.What was more important was that all patients signed a paper that said the samples were stored in his office were the property of his patients and no one else. That was the legal loop hole that quieted the barking dogs.
No one accepted the patients owned the samples, not even the state of Missouri and taking those samples without their permission and destroying them was a violation of patient’s rights and an invasion of their medical records.
When those patients went to the health department and requested the return of these samples; mysteriously and inexplicably all interest by the Health Department in re-educating Dr. Masters on how to diagnose and treat Lyme patients in Missouri vanished.
Unfortunately Ed masters died at age 63 in 2009 from complications of diabetes. His lectures will be missed both for the insight and humor that Dr. Masters seamlessly wove into all aspects of his life.
Dr. Ed Master’s biggest contribution to Lyme disease will be the understanding that Lyme is not a stand-alone disease, nor a static disease that does not change.
Like its relations that cause Relapsing Fevers, the Lyme spirochete is prone to change, adapt, migrate, and survive.
Twenty years before it was accepted, Dr. Masters suggested that the migration of birds spread ticks north and south but in 1995 this was not accepted.
Now we know that many of those migrating bird species not only harbor several species of ticks, but also are host reservoirs for Borrelia burgdorferi.'
The steps these pioneering doctors have gone to to protect themselves from Health Authorities with their own agenda!
I have posted lectures by Tom Grier in the right hand column of this blog all very enlightening reading.
It begs the question to what lengths our new UK NHS Lyme clinic along with Porton Down will be going to to help the patients.