It has the makings of a John LeCarré thriller: A debilitating, potentially deadly, infectious disease carried by an insect the size of a poppy seed is spreading across the land. The medical establishment insists that everything is under control and that all these “sick” people are slackers or need psychiatric help. A few doctors—just a few—believe the people are really sick, and treat them according to guidelines not approved by insurance companies. One such doctor gets people in wheelchairs walking again, gives bedridden folks a new lease on life. Sick people flock to him from all over the land. He has saved many lives, and never harmed a patient. Yet one day his license is summarily suspended. There are not enough other doctors in the land to treat his many patients.
This is a story about that doctor and a state Medical Examining Board that has not always looked kindly on practitioners who treat “outside the box.” The disease is real. It’s called Lyme, and by some expert accounts, it’s an epidemic. The place is Wisconsin. But it could happen almost anywhere.
[Photos: Dr. Robert Waters in his Wisconsin Dells office; Lyme Patient John Blohm; Atty. Arthur Thexton at the November hearing for Dr. Hoffmann.]
Wisconsin Lyme doctor gets reprieve
By Fran Zell and Tom Boswell
John Blohm was a charter airplane pilot until a mysterious disease made it impossible for him to fly. Neurologists did meticulous work-ups and found nothing wrong, despite the fact that Blohm couldn’t hear or see right, suffered from exhaustion, extreme dizziness, bouts of fever and chills, tremors, and what he refers to as “lightning-bolt” zaps of pain.
“I spiraled downhill for years,” says Blohm. “The doctors referred me to psychiatrists and I began to think I was crazy. A Mayo Clinic specialist accused me of malingering and said I should go back to work.”
After seven years, Blohm did some research and realized his symptoms were typical of Lyme disease, a tick-borne bacterial infection endemic to Wisconsin. He remembered that years earlier – just before his symptoms began – he had been bitten by a tick in his suburban Beloit backyard. He had tested negative for Lyme during the course of his illness but now he found a doctor who treated chronic Lyme disease at his small clinic in Waupaca.
“Dr. Hoffmann was a godsend,” he says. “By the time I first saw him, I’d lost the use of one arm and could barely walk. The vertigo was unbearable. I was losing about five pounds a week. He diagnosed me with Lyme based on my symptoms and history and started treating me with antibiotics. He brought me back from the edge.”
In mid-November, Blohm’s treatment ended abruptly. His Lyme doctor — John Gregory Hoffmann — was summoned to Madison by the State’s Medical Examining Board. After a brief hearing, his medical license was suspended, effective immediately.
“The state says this has nothing to do with Lyme disease, but I think it’s a veiled attack,” asserted Blohm, who spearheaded a movement among fellow Lyme sufferers to challenge the Board’s decision. “Dr. Hoffmann does not treat Lyme according to (standard) guidelines, and I think they’re trying to stop him.”
Arthur Thexton, the Division of Enforcement (DOE) prosecuting attorney who filed the complaint requesting summary suspension, would neither confirm nor deny Blohm’s suspicion. “If I want to keep my job, I can’t talk to the press,” he said.
On January 18 Hoffmann, his attorney, and the Medical Board reached an agreement whereby the suspension of Hoffmann’s license would be “stayed” subject to various terms and conditions. Hoffmann must work under supervision of a professional mentor, may not accept new patients, must complete a “robust self-study program,” and pass a Special Purpose Examination (SPEX), a test used by medical boards to re-examine a licensed or previously licensed physician’s basic medical knowledge.
“They’re saying I’m not up to standard with modern medical practice, that I practice out of the routine.” Hoffmann commented after his January Board appearance. “It’s not a complaint regarding patient care.”
Thexton reopened an old (1997) case on Hoffmann in 2007, for reasons that are not revealed in the case file. The old case related to a 1992 incident in which Hoffmann had been drinking while on call. The case was fully resolved in 2006.
Marina Andrews, who blogs about Lyme from Luck, Wisconsin, said the new case originated with a former patient who complained that Hoffman would not prescribe pain medication during an office visit. Thexton then asked for patient records, many of them Lyme files. “There was a public outcry at the time and Thexton was temporarily removed from the case,” Andrews said.
In 2008, the Board ruled that Hoffmann’s charts suggested possible “deficiencies in medical knowledge and practice standards” and referred him to the UW Medical Physician Assessment Center. Last August, a report from UW said Hoffmann had “significant deficiencies” based on standardized testing and recommended more testing. Thexton called for suspension, contending there was an immediate need to protect the public from Hoffmann.
Maybe he didn’t study for the test, but he’s a fabulous doctor, said Hoffmann patient Jennifer Christie of De Pere. “I had a severe situation recently. My kidneys were bleeding. I was in the ER three days in a row. Everyone at Bellin (Medical Center in Green Bay) missed it. I made one call to Doc and he immediately knew it was a drug interaction related to a med my primary provider put me on.”
“Dr. Hoffmann saved my life,” said Lyme patient Della Haugen, a former photojournalist for a Madison TV station, and one of two thousand people who wrote letters and signed a petition of support prior to the November hearing. “I saw lots of UW doctors and none of them could help me. I got so sick I had to stop working.”
A Milwaukee area public official who testified at the November hearing said Hoffmann’s Lyme treatment enabled her to leave her wheelchair. She told a reporter that since being bitten by a tick 14 years ago, she endured fainting spells, horrible neck and eye pain and numbness on one side of her body. “Then my legs wouldn’t support me. I was writing my will,” she said of the time before she started seeing Hoffmann.
Dr. Gene Musser, the Board member who made the motion to suspend Hoffmann’s license, said he could not discuss the case other than to note that the Board did not sanction Hoffmann because of his Lyme treatment practices.
But the fact remains that Lyme is a major medical controversy, to the point that Hoffmann was treating a disease — chronic Lyme — that the academic-medical establishment has long insisted does not exist.
“Is this an issue the state has with him because he’s operating outside of medical thought? I think it is,” said Dr. Robert Waters, who operates a medical clinic in the Dells. “They’re holding him responsible for something that happened 20 years ago. This doesn’t have anything to do with the sick people he treats. There’s no evidence he harmed anyone.
“The state has unlimited funds to continue a prosecution,” Waters said. “When a doctor runs out of money, his lawyers ask him to settle and stipulate and admit to certain things (he’s) done ‘wrong.’ The burden of proof is on the doctor, even when there are no complaints from patients.”
Waters said that the state, and Thexton in particular, have a pattern of coming down hard on alternative health care practitioners. He himself was the center of a highly publicized investigation by Thexton that was dismissed as groundless, in 2003, shortly after Thexton was removed from the case. “It went on for six and a half years, cost me $50,000 in legal fees, untold stress, heartache and lost income,” he said.
Thexton and DOE attorney James Polewski investigated so many alternative practitioners at the time that some of those involved, including Watertown nurse Barbara Lemke, considered it a “vendetta.” Lemke was called before the Board for using an allergy elimination treatment called acupressure. She ultimately appealed her case and was exonerated. “But it cost me $26,000 (in attorney fees) to keep my license,” she said.
As a result of the experience, Lemke helped found the Wisconsin Association for Health Freedom. “We're currently trying to get a bill passed that would allow practitioners to use alternative therapies without fear of being prosecuted,” she said.
Waters was investigated for using a toxin-removing therapy called chelation for a controversial purpose — treating cardiovascular disease and circulatory disorders. Thexton publicly called it “quackery,” even though the National Institute for Health was conducting a major study on chelation in which Waters had been asked to participate.
Hoffmann follows treatment protocols for Lyme developed by the International Lyme and Associated Disease Society (ILADS), a small, but vocal medical group based in Washington, D.C. ILADS contends that, if untreated or under-treated, Lyme bacteria remain in the body and the disease goes “chronic,” manifesting in a host of serious symptoms often misdiagnosed as fibromyalgia, chronic fatigue, rheumatoid arthritis, early Alzheimer’s, Parkinson’s, multiple sclerosis, Crohn’s disease, ALS and more.
Most doctors – and health insurers – debunk ILADS. They follow Lyme protocols mandated by the Infectious Disease Society of America (IDSA), which holds that Lyme bacteria are eradicated after a short course of antibiotics.
“If symptoms remain after that, they say it’s a somatic syndrome,” said Dr. Burton Waisbren Sr., a founding member of IDSA who disagrees with the group’s position on Lyme. The Milwaukee internist and infectious disease specialist asserts that chronic Lyme does exist, and that patients seriously ill with it have responded to long-term antibiotic therapy at his clinic. In his new book, Treatment of Chronic Lyme Disease (iUniverse, Inc.), Waisbren chronicles 51 recent cases (not all of them successful) that have led him to conclude that chronic Lyme is a national epidemic.
Recent statistics from the Centers for Disease Control (CDC) indicate that Wisconsin is fast becoming ground zero for Lyme disease. Reported incidences have increased more than five-fold since 2000, making Wisconsin the third hardest-hit state in the country. But there are only a handful of doctors in the Midwest who will treat Lyme outside of IDSA guidelines.
“I think for anyone in Wisconsin prescribing outside of standard protocols, there is always going to be the chance of an issue coming up,” said Kim Saxe, a naturopathic doctor who provides complementary services to many Lyme patients at her Brookfield wellness center.
Saxe said that insurance companies “are raising red flags” and reporting doctors for their prescribing methods. “It’s been an issue with Lyme doctors in other parts of the country who have lost their licenses,” she said. “It’s how the issue reaches medical boards. It is also why many Lyme doctors are choosing not to bill insurance.
“I know there were other claims made against Dr. Hoffmann,” she said, “but I find it a little challenging to believe (the case) was unrelated to his Lyme prescribing.”
Saxe said she knew little about Lyme until she contracted it herself about four years ago. She said that for two years she saw a lot of doctors and spent $20,000 out of pocket on tests that turned up nothing, despite her abdominal dysfunction and loss of muscle mass.
“No one thought of Lyme. Doctors told me I needed antidepressants and anxiety medication, but I knew something serious was going on.”
Eventually she ran her own Lyme test. “Lyme testing is horrible, she noted. “There are many false negatives.” But Saxe tested positive, then found a Milwaukee internist who treats Lyme outside of IDSA guidelines but does not publicize the fact for fear of losing his license.
“Lyme doctors are doing what they feel and know is right for patients, even though it is not the standard of care,” she said.
Waters went through ILADS training in 2009 and now also treats Lyme. He said he stopped taking Medicare, Medicaid, and private insurance years ago because he didn’t want to risk being investigated by the state for doing “what I know is right for patients.” The complaint Thexton prosecuted him for originated with a doctor and Blue Cross Blue Shield.
State Senator Dale Schultz (R) supported Waters at the time and said he still does.
“I have a number of constituents who are his chelation patients and they are passionate about him,” he said. “That led me to be supportive too. Information came to light that the U.S. government was using chelation to take bad things out of the body. It seemed extremely unreasonable to me for the state to pick on someone for doing the same treatment.”
Blue Cross Blue Shield also initiated the complaint that precipitated a nine-year licensing battle that Dr. Eleazer Kadile, a Green Bay chelation practitioner, said cost him $500,000 in legal bills.
“It was purely politics,” alleges Kadile, who was ultimately cleared on charges relating to chelation. Thexton’s key witness in both chelation cases was a Massachusetts doctor with consulting ties to the insurance industry. He was largely discredited on the stand, though he billed the state for nearly $86,000.
Sheldon Wasserman, a Milwaukee physician on the Medical Examining Board, believes that some of the conflict over state regulation of alternative health care practitioners can be mitigated with a re-write of Chapter Med 10 of the Administrative Code, which covers unprofessional conduct of physicians. Wasserman, who served 14 years in the State Assembly (D), assumed the chair position on the Board in January.
“Rewriting of Chapter 10 will be one of my top priorities for the year,” Wasserman said. He feels there is an “emerging position” on the Board to develop rules that would allow physicians freedom to practice as long as there was “truly-given informed consent” on the part of patients. The code revision would “put a lot of burden on physicians” to inform patients that their treatment was not “the standard of care” and “basically create a buyer-beware type of situation.
“I think people have the right to decide what they want, and the right to do what they want with their own bodies, across the board,” commented Wasserman.
Waters addressed the issue of doctor-patient understanding several years ago, following the lead of alternative practitioners in other states. He turned his clinic into a private association, charging a nominal fee to patients who then sign a contract accepting services. It enables him to offer the treatments patients seek without interference from governmental bodies, he explained.
John Blohm, for one, said he knew what he was getting into when he started seeing Hoffmann. “He told me about the risks of long-term antibiotic treatment. But I also know it will kill me if I don’t do it. I made a very informed decision. I chose to follow ILADS guidelines.”
The fallout from Hoffmann’s license suspension has been huge, said Kristin Collins, a Pewaukee nurse whose two small children are Hoffmann’s patients.
“He has about 1,500 patients, said Collins, who volunteered at the Waupaca clinic for four days following the Board’s November decision to suspend Hoffmann’s license. “Dr. Hoffmann has his own unique way of treating. He took Medicare and Medicaid, and most other insurance. He never turned his back on anyone because of money. There aren’t enough other Lyme doctors in the state to take on these patients.
“Some people called the office, sobbing,” she said. “They had seen numerous doctors who ignored them. Doc believed them and helped them.”
The “interim” stipulation agreed to by Hoffmann and the Medical Board on January 18 represents a “pathway” to full re-instatement of the doctor’s license, according to Greg Gasper, spokesperson for Wisconsin’s new Department of Safety and Professional Services.
About a half-dozen of Hoffmann’s patients spoke at the meeting in support of him, despite the fact that his case was not listed on the public agenda.
“They (the Board) got the message,” Hoffmann commented.
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Photos of Atty. Arthur Thexton and Dr. Robert Waters by Tom Boswell. Photo of John Blohm by Laura Blohm.
About the writers: Fran Zell and Tom Boswell are freelance journalists residing in Evansville, Wisconsin. Zell has written extensively about Lyme disease, including stories in the Chicago Tribune and Milwaukee Magazine. She has written cover stories for Isthmus and the Chicago Reader. Tom Boswell is a writer and photographer who has had cover stories in the National Catholic Reporter, Shepherd Express and other publications. His photographs for an Isthmus cover story in December 1996, won a first place award from the Milwaukee Press Club.