Breaking this up for ALL NEURO LYME folks like me who can NOT read or comprehend long, solid blocks of text due to decades of chronic lyme disease.

To all psychologists & psyciatrists etc. reading here who write their articles, please remember us NEURO LYME and other neuro folks who can NOT read your long, never-ending paragraphs.

Please break them up for us, and you'll have more readers and those leaving feedback or contacting you! God bless you for your consideration of folks like me/others! :) xox BettyG, Iowa lyme activist

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Rebel with a Cause: The Incredible Story of Dr. Masters, Part 1

He braved hand-to-hand combat with CDC over Lyme in the South.

By Pamela Weintraub on
June 25, 2009 - 8:12pm
in Emerging Diseases

It was July 2003 that I set out on a journey to Cape Girardeau, Missouri, to visit Edwin J Masters, the doctor involved in hand-to-hand combat with the Centers for Disease Control and Prevention over the existence of Lyme disease in the Southern United States.

Working with a few intrepid colleagues, Dr. Masters managed to generate powerful evidence for Southern Lyme, though his evidence was continually undermined.

For two days straight I sat with Dr. Masters in his oversized basement, reviewing document after document showing how data had been massaged to cast doubt on the disease.

Ed Masters' story sheds light not only on Lyme disease but also the dangers we all face when medicine is politicized and studies skewed.

His great persistence finally led to recognition of Masters' disease, the Lyme of the south.

The heroic Dr. Masters died on June 21 2009. In his honor, I'll spend several days retelling his sprawling, riveting, and most important tale.

Front and center in the debate over the existence of Lyme disease in the Southern U.S. was the country doctor, Edwin J. Masters of Cape Girardeau, Missouri, who reveled in fighting for a cause.

It was near the start of his career, in 1979, that Masters wrote to his US Congressman, an ultra-liberal in a region of Midwest moderates, asking if he'd voted himself a raise.

The Congressman, Bill Burlison, wrote back claiming he couldn't remember how he voted on his pay raise, but if the doctor wanted to know he could look it up himself.

Incensed at the rudeness, Masters' father-in-law alerted the media, and the exchange made TV news.

Burlison retaliated by reporting Masters to the Federal Election Commission for writing a political missive on medical clinic stationery (an illegal tax deduction.)

But Masters, a self-described "Eagle Scout and a stickler for every last detail," had proof in the form of cancelled checks that he'd paid for the stationery himself.

Backed by the evidence (and the American Civil Liberties Union), Masters lashed back in anti-Burlison opinion pieces emblazoned on clinic letterhead and sent to newspapers throughout the State.

As election time neared, the drama increased:

Whenever Burlison's opponent, conservative Republican Bill Emerson, couldn't attend a debate, Masters came in his stead.

Once word got out, people crowded the debates not to see the candidates, but to watch the engaging Dr. Masters.

A six-term incumbent, Burlison lost the election of 1980 --and Masters' new friend, the freshman Congressman Emerson, was swept in.

Despite his love of the brawl, Masters was your quintessential hail fellow well met --if you wanted a congenial sports buddy or a friend to confide in, Masters was your man.

Tall, affable, and classically handsome, with a swath of thick hair and a wide, friendly grin, Ed Masters found himself front and center in a fight he never sought -- documenting a new Lyme-like illness or Lyme disease itself, often present in areas considered non-endemic by the CDC.

He entered the fray when, as an amateur forester, he was asked to give a talk on Lyme at a forestry meeting in 1988.

Because he'd never seen a case of Lyme disease, he prepared exhaustively, even borrowing slides from health departments in Minnesota and throughout the East.

"I spent a year working on the talk," Masters says.

The lecture went fine, but when he returned home to Missouri he started recognizing what seemed like Lyme disease in patients of his own.

The first such patient was a farmer, age 55, who'd been the picture of health for years. One day he came in, emotionally overwrought and said, "I ache all over, knees and ankles, I can't think clearly and I need help getting out of the combine."

Masters knew his patient's hobby was fishing, and asked him whether, in the course of that activity, he'd ever been bitten by ticks.

Of course he'd been bitten,the farmer responded, like anyone who fished.

In possession of a good-sized collection of Lyme rash photos following the forestry talk, Masters took some out and asked the farmer to look at them. Had he ever noticed one of these?

"I had one of those last summer," the farmer said, explaining that he'd been going downhill ever since.

First Masters tried to rule out any other cause for the illness. But when he could find nothing else the matter with the farmer, who was headed for disability, Masters treated with antibiotics.

Not only did the farmer recover, but one year later he was so full of energy he expanded his operation by buying an adjacent farm.

Now that Masters knew what to look for, he started seeing Missouri Lyme in other patients, too.

Not only did they have the typical erythema migrans rash, but also swollen joints, meningitis, neuropathy, and other specific hallmarks of the disease.

Masters sent their blood into a lab, and many tested positive on the ELISA, the standard Lyme disease test of the day.

Thus validated, Masters reported his cases to the Missouri Department of Health, but his reports were ignored.

If he'd read just a couple of articles on Lyme disease, he might have backed off, but after a year of prepping for his forestry talk he couldn't believe he had it wrong.

So he started documenting the cases as precisely as he could. Every erythema migrans rash warranted an entire roll of film, and he made sure to photograph a rash and face together so he wouldn't be accused of recycling the same rash again and again.

In preparation for the day that better tests would come, he obtained a special refrigerator for his office and began to store samples of patient rashes and blood.

To be continued,
Adapted from Cure Unknown, Inside the Lyme Epidemic.
(St. Martins Press, 2008)

Psychology Today Magazine
© Copyright Sussex Publishers, LLC

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Pam, thank you so much for writing this MEMORIAL for Dr. Masters! Never met the man, but I've been very intrigued by him, and it was nice reading again what you wrote about him in your book CURE UNKNOWN!

I loved how he stood up for himself, and taking 1 full year to educate himself to do a talk about lyme disease
for a forestry talk! What dedication to gain that much knowledge to do a talk!

I look forward to your continued memorial to one of our great lyme disease researchers whose MASTERS DISEASE was called STARI !!

BettyG, Iowa lyme activist

I'm so sad to hear this news! What a terrible loss to everyone.

I once watched a talk he gave on a DVD, and was immediatly impressed. I benefited personally from the knowledge that he shared with everyone.

There seem to be few heroic doctors when it comes to the Lyme world. He was definetly one of them.

Pam, thanks for sharing these wonderful stories about a very special human being. People who are interested are welcome to read my own tribute at http://www.lymedisease.org/news/index.php
I count myself among the lucky people who were blessed to spend time with Ed. I am sad he is gone.
Phyllis Mervine
CALDA
www.lymedisease.org
Empowering Patients Through Advocacy, Education & Research

Dear Pamela-

Thank you, thank you, thank you. Sounds like Dr. Masters was a true hero in this time of Lyme controversy, as you are. I read your book and was so very thankful that someone of your expertise was able to convey your own struggle with such depth and humanity in an era of medical coverage in America which feels, frankly, barbaric. As a person who continues to struggle with this devastating illness, I am ever hopeful that we as people will continue to search for the answers that will truly bring relief to all. I am grateful to courageous people such as yourself, Dr. Masters, Dr. Burrascano, the group at Columbia University who continue to search for answers and who truly are interested in revealing the reality of the struggle for many. It feels sad, but the fact is, that many of us feel we need the validation. I never ever could have imagined how challenging life could be, until I contracted Lyme. I used to work in energy consulting and architecture, until my brain and body were ravaged by Lyme and it's co-infections, and now I'm lucky if I can balance my checkbook. Thank you for your continued coverage and fight. I was wondering if it might help everyone to break away from the illness know as "Lyme", as the IDSA seems to have monopolized the opinion on that illness, and come up with a more accurate description of the multiple illnesses that many contract after having been bitten by a tick, or other carrier?
With blessings to you and in sadness in reading the loss of such a brave man and doctor.
Collette

I had not only the great pleasure but also the great fortune to have been treated by Dr. Masters for Lyme Disease since 1990...The man truly saved my life as I would in no way be able to write this without his patience, understanding and hard fought knowledge...I was always afraid of what I was going to do if he retired and when I heard that he had passed away, I sat in my truck and cried like a child...I had not lost a caregiver but a lifegiver and most importantly a friend...We, in the past few years, had children in medical school and were able to visit and share progress as well as experiences...Early in my treatment when I had trouble talking or even focusing my eyesight he would sit with his hand on my shoulder and nothing else, just be my friend...
My life has been forever changed by an article in May 1990 Outdoor Life magazine about Lyme Disease and Dr. Masters...Also, by the fact that my local MD was able to get me an appointment with Dr. Masters clinic where for the first time since getting ill, I felt like someone believed me... Thank God for the Grace He shed on Dr. Masters...
John R. Petrea