The following story, covered by Pamela Weintraub, in Cure Unknown: Inside the Lyme Epidemic, should be made into a movie.
Seriously. A Movie.
Way back in 2003 Weintraub interviewed Dr. Masters of Cape Girardeau, Missouri, about Lyme disease in the South, though the “powers that be,” continued to deny it (and still do). The interview is broken down into 4 sections below. If you have the time, please read Weintrab’s version. With journalistic flair and insight as a patient herself, she reveals the character of the doctor who never shied away from controversy. Highlights below.
Dr. Ed Masters http://www.georgialymedisease.org/we_salute
https://www.psychologytoday.com/blog/emerging-diseases/200906/rebel-cause-the-incredible-dr-masters-part-1 Part 1: Masters started recognizing Lyme in his own patients after preparing for an entire year for a talk on Lyme for a forestry meeting in 1988. He dutifully reported his cases to the Missouri Department of Public Health, who completely ignored him. Masters took pictures of every rash with the corresponding patient and bought a special freezer to store patient rash and blood samples.
https://www.psychologytoday.com/blog/emerging-diseases/200906/rebel-cause-the-incredible-dr-masters-part-ii Part 2: Understanding treatment failure, Masters treated acute patients with 3-4 weeks with much success and others for longer. Masters worked with Missouri entomologist, Dorothy Fier, who found borrelia in 2% of sampled lone star ticks and who supported Masters’ Missouri Lyme. Despite publicity and validation, the CDC insisted that the EM rash was NOT diagnostic for LD for Missouri patients due to the fact that neither Ixodes dammini nor Ixodes pacificus were found there. Go here: http://steveclarknd.com/wp-content/uploads/2013/11/The-Confounding-Debate-Over-Lyme-Disease-in-the-South-DiscoverMagazine.com_.pdf for a great article on how Andrew Spielman’s tick maps ruled Lyme Land like the iron curtain, and frankly still do, dictating where Lyme is and is not. https://madisonarealymesupportgroup.com/2017/08/24/canine-maps-better-than-the-cdcs-in-predicting-lyme-disease/ (nothing’s changed)
https://www.psychologytoday.com/blog/emerging-diseases/200906/rebel-cause-the-incredible-dr-masters-part-iii Part 3: CDC researchers camped out in Masters’ office for 2 weeks and then took blood and biopsy samples back to Fort Collins. Two years later Masters received a draft that asserted that Missouri rashes were different from real Lyme rashes despite expert dermatologists from all over the globe ruling that these rashes were identical. Masters went over the charts with a fine tooth comb and found huge CDC errors. Another contentious point was the arbitrary cut off date imposed by the CDC which did not pick up serious late-stage symptoms. Another was the CDC’s rejection of many positive blood tests performed in its own lab, as well as other lab work showing “motile spirochetes” in nearly 5% of lone star nymphs. Long story short, after numerous revisions, Masters could never sign onto the bastardized study. The CDC had purposely tossed out data and manipulated the results.
https://www.psychologytoday.com/blog/emerging-diseases/200906/rebel-cause-the-incredible-dr-masters-part-iv-conclusion Part 4: The CDC essentially tried blackmailing Masters into signing off on the study before they would let him see the final draft. Refusing the bait, he published a letter of objection in the Journal of Infectious Diseases as well as an article of his own in Missouri Medicine which showed Missouri patients met the CDC surveillance definition for LD and growing evidence that lone star ticks were infected with an unidentified spirochete causing identical symptoms of LD in patients. When the CDC study came out they unbelievably attributed the rashes they labeled STARI to an allergy to tick saliva! In the acknowledgment section of the paper where dozens of folks were thanked, they completely omitted the man who made it all possible – Dr. Ed Masters.
If this makes you want to hit something, unfortunately, it only gets worse.
Supporting Masters’ theory, James H. Oliver, Jr., Callaway later showed that mice from 5 southern states tested positive for Borrelia burgdorferi, the causative agent of LD and had just as many reactive antibodies as mice from Connecticut. He also found a range of new Southern ticks transmitting a literal hodgepodge of borrelia as well as a unique Southern strain of Bb with unusual outer surface proteins that are undetectable on Northern blood tests.
This was over 20 years ago and Southern authorities and the CDC still deny Lyme: https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/ They also still cling to the contention that STARI is a rash-only illness unrelated to Lyme and that antibiotics should be used sparingly if at all. Masters’ patients all improved dramatically with longer antibiotic treatment.
Left out in the links above but on page 185 in Weintraub’s book she reveals another fly in the ointment: The CDC kept changing the blood tests from year to year until samples that were positive were now negative.
Microbiologist Tom Grier’s “A Short Historical Perspective of Lyme Disease,” https://www.lymeneteurope.org/forum/viewtopic.php?t=5133#p37209 reveals how Masters constantly had the state of Missouri on his tail and how yet even today the state singles out and persecutes Lyme doctors that deviate from the norm (CDC guidelines). In Masters’ case the state of Missouri illegally seized and destroyed all the patient’s medical records, blood samples, and skin biopsies in Masters’ freezer. What they didn’t know is that Masters had his patients keep duplicates in their own freezers. Better yet, all the patients had signed a paper announcing that the office samples were property of the patients alone – the legal loophole proving that seizing and destroying patient samples was a violation of their rights and medical records.
When patients demanded to have their samples returned, only then did the state stop harassing Dr. Masters.
By the way, this persecution has been happening non-stop in every state in the U.S. My own LLMD spent $50K out of pocket to defend his practice. Here is one such example: https://madisonarealymesupportgroup.com/2017/06/24/llmd-daniel-cameron-disciplined-by-ny-medical-authorities/
At least in Wisconsin the state medical boards strategically do not typically title the doctor’s offense with the word “Lyme” as they know patients will come unhinged. There’s a lot of us out here! What they often do is sift through patient records with such a fine toothed comb that they will find a nit. Any little nit. It is this nit that forces the doctor to pay a hefty fine, have their license suspended, or even have to close their practice. For an example of this type of witch hunting: https://www.uppitywis.org/blogarticle/wisconsin-lyme-doctor-gets-reprieve (Dr. Hoffman was killed in a car crash last year, and is horribly missed.)
A person once told Masters,
“Masters, they were having a big old fine party, and you’re the turd in the punchbowl. You spoiled it.”
We need more turds in the punchbowl.
For another great piece on Dr. Masters: 1992+Lyme+Times+V3N2+Fall Lyme Times, 1992
**Dedicated to Kathy White, who tirelessly advocates for patients in the South despite the fact it “doesn’t exist there.”** http://www.mvlymecenter.org/2013/06/24/lyme-stories-kathy-white-kansas-city/