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218-249-7990
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1001 East Superior Street
Suite L201
Duluth, MN 55802
Consultant in Infectious Diseases
St. Luke's Hospital
Clinical Associate Professor
University of Minnesota Medical School Duluth
B.S., Zoology, University of Washington, Seattle WA
MD, University of Washington School of Medicine, Seattle WA
Infectious Diseases
Dr. Bakken is the author of more than 60 scientific publications and has authored half a dozen book chapters on various infectious disease topics. He has been an active researcher during most of his career and in 1994 described the first 12 cases of a new infectious tick-transmitted disease named human granulocytic ehrlichiosis (HGE, now named human granulocytic anaplasmosis or HGA). HGA is now a reportable illness and currently ranks as the second most common tick-borne infection with more than 4000 cases reported in the United States. Cases of HGA have also been described in 13 foreign countries. During the last 15 years Dr. Bakken has conducted collaborative research on treatment alternatives for patients with relapsing Clostridium difficile diarrhea (RCDAD). He was the senior author on an article published in Clinical Infectious Diseases in 2003 that reported on the benefits of fecal biotherapy for RCDAD.
Infectious Diseases, Tick-Borne Infections, C. Difficile Associate Diarrhea, Hepatits C Infections
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Scientific Reviewer for:
http://www.med.umn.edu/duluth/DMRI/MemberAbstracts/Bakken_Johan/home.html
Published: Tuesday, April 20, 2010
Four years ago, after being bitten by a deer tick, Michelle Backes got treated immediately for Lyme disease. She thought she was safe until three months later, when her body started going numb. Then the onetime teacher from Lindstrom, Minn., turned to a highly controversial therapy: more than a year's worth of antibiotics.
It is, say medical experts, a reckless, unproven and potentially dangerous approach.
But today, Backes, 39, is fit enough to run marathons and is helping lead a grass-roots effort to change the way doctors treat patients like her. "We have to be little renegades," she said in an interview.
Lyme disease activists — who call themselves "Lymies" — are speaking out in courtrooms, state legislatures and even a new documentary, "Under Our Skin," to argue that the experts are wrong. They may have a growing audience: Some 1,000 Lyme disease cases were reported in Minnesota in 2008, a fourfold increase since 1998.
Last month, they scored a victory in Minnesota. With the help of some sympathetic legislators, activists from the Minnesota Lyme Action Support Group pressured the state Board of Medicine to forgo, for now, the ability to discipline doctors for using the unproven treatment.
It was extraordinary, in part because the board has never disciplined — or even received a complaint about — a doctor for using such treatments, said Rob Leach, the board's executive director. Yet the board agreed to adopt a five-year moratorium to prevent legislation that might have tied its hands further. "It was the lesser of two evils, as far as we were concerned," said Leach. Advocates say that a few doctors have been disciplined in other states for using the unproven treatment, and that some physicians in Minnesota have said they won't offer it because they're afraid of facing the same fate.
Dr. Johan S. Bakken, an infectious-disease expert at St. Luke's Hospital in Duluth, calls it "a sad statement when politicians begin to practice medicine without a license."
The problem, he and others say, is that many patients blame a wide constellation of painful and disabling symptoms — from panic attacks to impotence to memory loss — on what they call "chronic Lyme disease," without any evidence they were ever infected.
There's also concern that overuse of antibiotics can weaken their effectiveness and backfire on patients.
"We understand that people are suffering and we don't deny that, but you need to apply the right remedy for the right condition," said Bakken. "Now this has all been carried into the political arena. The basic message becomes, 'Don't confuse us with the facts.'"
A TELL-TALE RASH
Michelle Backes has no doubt she was exposed to Lyme disease. She found the tick on her left thigh a day after a run in a state park near Marine on St. Croix in May 2006 and noticed the tell-tale circular red rash on her skin.
Her doctor put her on standard treatment — 10 days of antibiotics — and sent her home.
Untreated, Lyme disease can cause arthritis, heart damage and other complications. But Backes didn't experience any of them. "I was fine," she said. "I'd thought I was done with Lyme."
Three months later, when she was competing in a triathlon, she noticed that her lip was numb. By the end of the race, after swimming, biking and running, "my whole right leg was numb," she said.
A specialist said she might have multiple sclerosis, especially after a brain scan found the distinctive MS "lesions." But when an acquaintance suggested it might be lingering effects of Lyme, it made "a lot of sense," she said.
Backes said she couldn't find anyone in Minnesota willing to give the treatment she'd heard about: long-term antibiotics. So she went to Missouri, where a doctor told her she had a "99 percent chance" of recovery. She took antibiotics daily for the next 14 months. Her "crushing fatigue," dizziness and other symptoms slowly got better until "I was symptom-free."
'A VERY NASTY PROCESS'
To Bakken, the infectious disease expert from Duluth, that treatment makes no sense. But four years ago, he discovered how explosive the debate could be when he helped write the 2006 national guidelines on Lyme disease for the Infectious Diseases Society of America.
The guidelines said antibiotics should be given for 10 to 28 days, and that the claims of any benefit from longer-term treatment are unproven.
That fall, Connecticut's attorney general, Richard Blumenthal, launched an antitrust investigation of the group, saying the guidelines were flawed and being used by insurers to deny patients care. He later accused members of "undisclosed" conflicts of interest in drafting the guidelines.
"Unprecedented," Bakken said of the investigation, "a very nasty process."
The infectious disease group denied the allegations, but as part of a 2008 settlement agreed to sponsor an independent review of the guidelines, expected later this month.
But Dr. Elizabeth Maloney, a onetime family physician in Wyoming, Minn., says the evidence isn't cut and dried.
"The question becomes, what do we do for the people in whom standard therapy did not work?" said Maloney, medical adviser to the Minnesota Lyme Action Support Group.
While no studies prove long-term antibiotics work, she believes it's still an open question scientifically, especially as researchers learn more about the disease. "The science isn't here yet to have restrictive guidelines in place."
The fact is that some patients improve after months or years of suffering, she said, and "to do nothing is to potentially condemn a patient to ill health and possibly death from Lyme disease."
But Dr. Gary Kravitz, an infectious-disease specialist in St. Paul, says the advocates are "misguided." He says many of these patients probably don't have Lyme disease at all; it's become a catchall for a "laundry list of symptoms," much like chronic fatigue syndrome a few years ago.
Kravitz cited the case of a Minnesota woman who had lupus, but quit her medication when she became convinced she had chronic Lyme disease, and died. "It makes me really angry as a physician," he said. "(They) start treating these people with antibiotics under some blind faith that this causes (their) symptoms."
Maloney agrees that could be a danger. "I really do caution people to not see Lyme everywhere, because that's not helpful."
Backes, though, says she doesn't need any more evidence. "It made the difference for me," she said of her treatment.
But to Bakken, the fact that some people feel better on antibiotics doesn't mean that's the right treatment. "There's a very strong placebo effect," he said. "Beliefs can move mountains."
http://lubbockonline.com/stories/042010/hea_612169387.shtml
Minn Med. 2008 Jul;91(7):37-41.
Kemperman MM, Bakken JS, Kravitz GR.
Minnesota Department of Health, USA.
Comment in:
Lyme disease is a tick-borne illness endemic to Minnesota that can have potentially severe complications. As the incidence of Lyme disease continues to increase, it is important for physicians in Minnesota to become familiar with its clinical aspects, including the concept of "chronic Lyme disease." Chronic Lyme disease is a misnomer that is often applied to patients with nonspecific presentations who may or may not have a history of infection with Borrelia burgdorferi, the agent that causes Lyme disease. When a patient does present with persistent nonspecific symptoms attributed to chronic Lyme disease, clinicians should ascertain the presence of objective manifestations, obtain laboratory results, and get a history of tick exposure. If active infection with B. burgdorferi is unlikely, they should avoid prescribing empiric antibiotic therapy and instead thoroughly evaluate the patient for other possible causes of the complaints and recommend appropriate care.
PMID: 18714930 [PubMed - indexed for MEDLINE]
by T.W. Budig
ECM Capitol reporter
Legislation, advocates say will help remove a fear factor among Minnesota physicians in the treatment of chronic Lyme disease, is heading to the Senate floor.
But detractors of Sen. John Marty’s bill argue that it sets a precedent of government meddling in medicine and question whether chronic Lyme disease even exists.
Green-shirted supporters of legislation concerning Lyme disease treatment appeared at the Capitol today (Monday, Feb. 8) to back a bill by Sen. John Marty, DFL-Roseville, that protects from disciplinary action by the Board of Medical Practice doctors who prescribe or dispense long-term antibiotic treatment to treat chronic Lyme disease. (Photo by T.W. Budig, ECM Capitol Reporter)
Marty’s bill stipulates that physicians cannot be subject to disciplinary actions by the state board of medical practices solely on basis of prescribing, administering or dispensing long-term antibiotic treatment for patients diagnosed with chronic Lyme disease.
“This bill frees physicians to use all of their skills to treat Lyme disease patients,” said Dr. Elizabeth Maloney of Wyoming to the Senate Health, Housing and Family Security Committee.
Marty, a Democrat from Roseville, chairs the committee.
A number of people before the committee testified to the difficulties they encountered in trying to get treatment for chronic Lyme disease.
Concerns not taken seriously
The illness was misdiagnosed, their concerns not taken seriously, and the lack of help — physicians willing to prescribe long-term antibiotics — forced them to other states for treatment, several said.
Michelle Backes of Lindstrom, a former college athlete, marathon runner and educator, testified that her chronic Lyme disease was diagnosed as MS. “Not the words anybody would want to hear,” she told the committee. (Photo by T.W. Budig, ECM Capitol Reporter)
Bat Backes questioned the diagnosis.
“I was completely fine before the tick bite,” she said.
Backes believed additional antibiotic treatment could be answer to her illness — Bells palsy, vomiting, other symptoms. “But I could not find a doctor in the state that would treat me,” she said.
Like others who testified before the committee, Backes eventually found a physician in Missouri who treated her with a series of antibiotics over 15 months. “I am now symptom free and have no new brain lesions,” she said.
She’s back to running marathons.
Transmitted by black-legged ticks
Lyme disease is a bacterial infection transmitted by black-legged ticks, also called deer ticks.
Testifiers, such as Dr. Elizabeth Maloney, of Wyoming, and Michelle Backer, of Lindstrom, a Lyme disease victim, spoke on behalf of the legislation. (Photo by T.W. Budig, ECM Capitol Reporter)
If left untreated, the disease can cause paralysis, pain or numbness in limbs, irregular heartbeat, and loss of ability to concentrate, according to Minnesota Department of Health.
In 2008 there were 1,050 confirmed cases of Lyme disease in Minnesota.
A telltale mark of the disease is the distinctive “bull’s eye” skin rash that often, but not always, appears on Lyme disease victims after infection.
But not all physicians believe that a chronic Lyme disease exists.
Chronic Lyme disease
Dr. Johan Bakken, a physician at University of Minnesota-Duluth Medical School who helped draw up Lyme disease treatment guidelines along with others from the Infectious Diseases Society of America (IDSA), testified that there was no scientific evidence to support “chronic Lyme disease” after completion of antibiotic therapy.
Additionally, there is no published human evidence that demonstrates benefit from long-term antibiotic treatment, he explained.
Indeed, such treatment could prove harmful or fatal while also producing multi-resistant strains of bacteria.
Bakken invited those who believed in the validity of long-term treatment and existence of chronic Lyme disease to conduct research. “But right now there isn’t the scientific evidence,” he said.
Dr. Johan Bakken, of the University of Minnesota-Duluth and one of the authors of an Infectious Disease Society of America treatment guideline for Lyme disease, argued that there is no scientific evidence supporting the existence of chronic Lyme disease nor the benefit of long-term antibiotic treatment. (Photo by T.W. Budig, ECM Capitol Reporter)
Bakken advised the committee to delay a decision on Marty’s bill until after an independent review of the IDSA Lyme disease treatment guidelines, which were the subject of legal actions by the State of Connecticut Attorney General.
No Minnesota physician has been subjected to discipline by the board of medical practices as the result of prescribing long-term antibiotics, said Marty.
But bill supporters believe complaints could come from insurance companies unwilling to pay for such treatments.
It’s a bigger problem
“I think this is a bigger problem than I think anybody realizes,” said Sen. Paul Koering, R-Ft. Ripley, of Lyme disease in Minnesota. Koering serves on the committee.
Sen. Sharon Erickson Ropes, DFL-Winona, a registered nurse, said she would rather err on the side of patients and supported Marty’s bill.
Sen. John Doll, DFL-Burnsville, amended the bill, putting on sunset date. He voted for the bill, too.
So did Sen. Debbie Johnson, R-Ham Lake.
The bill was not an attempt, explained Marty, to force a kind of treatment but allow physicians to use their best judgment.
But a Minnesota Medical Association spokesman argued the legislation was setting a bad precedent.
By ANDREW C. REVKIN
Published: July 12, 1995
Correction Appended
A newly identified and sometimes fatal bacterial illness transmitted by the same tick that carries Lyme disease has stricken at least a dozen people in the tick-infested suburbs north of New York City in the last several weeks, medical researchers say.
The disease, which can produce more severe flu-like symptoms than Lyme disease, is easily treatable once diagnosed, though it responds to only one type of antibiotic while Lyme responds to several, the researchers said.
Diagnosis, though, can be a problem in cases of the new infection, called human granulocytic ehrlichiosis, or H.G.E. While Lyme disease is often signaled by a telltale circular rash around the site of a tick bite, the new infection usually arrives unannounced, multiplying inside white blood cells and then typically causing a sudden fever, chills, headaches and muscle aches.
Nationwide, four people, including a New Haven man, have died from the new infection. In contrast, Federal health officials have yet to document a single death out of tens of thousands of cases of Lyme.
About 60 cases of the new infection have been confirmed nationwide so far, but dozens of other cases of illness from tick bites fit the pattern, said Dr. J. Stephen Dumler, a pathologist at the University of Maryland School of Medicine, who is analyzing the DNA of bacteria isolated from tick-bite patients.
"We're probably just seeing the tip of the iceberg," said Dr. Johan Bakken, an infectious disease specialist at the Duluth Clinic in Duluth, Minn., who has been monitoring the spread of the disease since he identified the first cases in 1991, in patients from Wisconsin and Minnesota. Like the so-called Lyme belt in Westchester County and adjacent areas, that swath of the upper Midwest is a stronghold of Lyme disease and the deer tick that carries it. Of the first dozen H.G.E. cases Dr. Bakken studied there, two were fatal.
Together, Dr. Bakken and Dr. Dumler wrote an article, published last year in the Journal of the American Medical Association, providing evidence that H.G.E. was caused by a previously unknown species of bacterium.
With the first rush of illnesses from this summer's tick season, undoubtedly many more cases of H.G.E. will be identified in the New York area, said Dr. Gary Wormser, who has been sending blood samples to Dr. Dumler's Maryland laboratory from Westchester County Medical Center in Valhalla, N.Y.
"We're getting what look like new cases of this almost every day," said Dr. Wormser, who is chief of infectious diseases at the Westchester hospital. So far, seven of Dr. Wormser's cases have been traced to the new bacterium by DNA analysis done by Dr. Dumler, he said.
The bacterium causing H.G.E. is in the genus Ehrlichia, but has not yet been assigned a species name, Dr. Bakken said. Another closely related bacterium, Ehrlichia chaffeensis, was identified in 1990. Transmitted by a different tick, and occurring mainly in the South, Ehrlichia chaffeensis has caused an illness similar to H.G.E. in about 360 people and has also been responsible for several deaths, said Jacqueline E. Dawson, a microbiologist studying ehrlichiosis at the Federal Centers for Disease Control and Prevention in Atlanta.
The Ehrlichia genus also includes several well-known bacteria species infecting domestic animals, and the genus is in the same family, Rickettsia, as the bacterium that causes another tick-borne human ailment, Rocky Mountain spotted fever.
Dr. Bakken and several other doctors treating tick-borne illnesses said that a significant number of cases thought to be Lyme disease may in fact be caused, at least in part, by the newly discovered bacterium. Many of the symptoms of H.G.E. overlap with symptoms of Lyme, including such common complaints as high fever, severe headache and muscle aches. But in H.G.E., the symptoms tend to reach a peak very quickly, while Lyme often develops slowly.
"With H.G.E., you can go from wellness to a really severe, debilitating disease within hours," Dr. Bakken said. "You feel like someone worked you over with a bat."
Prompt treatment is essential, said Ms. Dawson of the Centers for Disease Control. "The longer a case goes without treatment, the worse the outcome," she said. Ehrlichiosis almost always quickly subsides if promptly treated with the appropriate antibiotic, Ms. Dawson said.
The antibiotics that are effective against both H.G.E. and Lyme -- doxycycline and tetracycline -- are out of vogue right now for Lyme treatment, said Dr. Peter Welch, chief of medicine at Northern Westchester Hospital Center in Mount Kisco. One problem, he said, is that these antibiotics can cause a bad skin rash if a treated patient is exposed to the bright summer sun, he said, and so some doctors avoid them in treating Lyme, a summertime disease.
If a patient with H.G.E. is treated with an unsuitable antibiotic, like amoxicillin, the illness can quickly progress to life-threatening intensity, Ms. Dawson said. That is what appears to have happened in a fatal case of H.G.E. last year in Aitkin, Minn., she said.
In the case, a 44-year-old man went to his doctor after developing an acute fever after several tick bites, Ms. Dawson said.
The doctor prescribed amoxicillin, an antibiotic that would be suitable for Lyme disease, but which has no effect on the bacterium that causes H.G.E., said Dr. Bakken, who closely followed the case. "He was told to come back if his condition didn't improve over a few days," Dr. Bakken said, adding, "Despite the fact that he continued to feel terrible, he did not call back. Several days later, they found him at his home, dead."
Fortunately, Dr. Bakken and other researchers said, deadly cases in otherwise healthy individuals seem to be very much the exception. The other deaths so far have generally been in patients who were elderly or suffering from other debilitating conditions, Dr. Bakken said.
For example, the New Haven victim, who was infected by Ehrlichia in November 1992, was an elderly man who had heart trouble and had been treated for cancer, said Dr. Catherine Hardalo, who handled that case while on the staff of the Yale New Haven Hospital.
"We thought those things were the problem," said Dr. Hardalo, now an infectious disease specialist in Morristown, N.J. But then they noticed clusters of bacteria, called morulae, in the patient's white blood cells. The H.G.E. infection seemed to stifle the patient's immune system, she said, adding, "He died of overwhelming infection."
More typical is the case of David Quinn, a bond trader from Briarcliff Manor, N.Y., who was seen by Dr. Wormser last month. Four days after being bitten by a tick, Mr. Quinn developed a sudden fever, chills and severe head and back pain. After several days on doxycycline, Mr. Quinn said, his symptoms quickly subsided.
Reflecting on his brush with a new bacterium, Mr. Quinn said: "We've always been pretty vigilant about ticks in general. Now we've just got another reason to be vigilant." Every night he and his wife and three children check one another for ticks, he said, adding:
"I feel sometimes like we're returning to our primate roots, like you see on those nature shows. But that's life."
Chart: "HEALTH WATCH: Tick-Borne Disease: Not Just Lyme" shows symptoms and treatments of Lyme disease and Ehrlichiosis, or H.G.E. and how to prevent tick-borne diseases (pg. B2)
http://www.nytimes.com/1995/07/12/nyregion/new-lethal-illness-carried-by-ticks-is-identified.html
J.S. Baken Quotes
"Chronic Lyme disease is a misnomer that is often applied to patients with nonspecific presentations who may or may not have a history of infection with Borrelia burgdorferi, the agent that causes Lyme disease." Minn Med. 2008 Jul;91(7):37-41. Dispelling the chronic Lyme disease myth. Kemperman MM, Bakken JS, Kravitz GR.
"Seroepidemiologic studies have demonstrated that HGA [Anaplasmosis] for the most part is a mild or even asymptomatic illness." Clinical diagnosis and treatment of human granulocytotropic anaplasmosis. Bakken JS, Dumler JS. St. Luke's Infectious Disease Associates, 1001 East First Street, Suite L201, Duluth, Minnesota 55802, USA. jbakken@slhduluth.com
"Treatment [for anaplasmosis] with doxycycline usually results in rapid improvement and cure." Ann N Y Acad Sci. 2006 Oct;1078:236-47. Clinical diagnosis and treatment of human granulocytotropic anaplasmosis. Bakken JS, Dumler JS. St. Luke's Infectious Disease Associates, 1001 East First Street, Suite L201, Duluth, Minnesota 55802, USA. jbakken@slhduluth.com
"Infectious diseases (ID) specialists have played a major role in patient care, infection control, and antibiotic management for many years. With the rapidly changing nature of health care, it has become necessary for ID specialists to articulate their value to multiple audiences." Clin Infect Dis. 2003 Apr 15;36(8):1013-7. Epub 2003 Mar 28. The value of an infectious diseases specialist. Petrak RM, Sexton DJ, Butera ML, Tenenbaum MJ, MacGregor MC, Schmidt ME, Joseph WP, Kemmerly SA, Dougherty MJ, Bakken JS, Curfman MF, Martinelli LP, Gainer RB. Metro Infectious Disease Consultants, Hinsdale, Illinois 60521, USA. rpetrak@innovativeventures.com
QUOTE- "“chronic Lyme disease.” This term is used by a small number of practitioners (often self-designated as “Lyme-literate physicians”) to describe patients whom they believe have persistent B. burgdorferi infection, a condition they suggest requires long-term antibiotic treatment and may even be incurable. Although chronic Lyme disease clearly encompasses post–Lyme disease syndrome, it also includes a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection." Source
QUOTE- "When physicians who diagnose chronic Lyme disease obtain laboratory tests to provide support for their diagnoses, they often rely heavily on “Lyme specialty laboratories.” Such laboratories may perform unvalidated in-house tests that are not regulated by the Food and Drug Administration, or they may perform standard serologic tests interpreted with the use of criteria that are not evidence-based.1" Source
QUOTE- "Antibiotic therapy can cause considerable harm to patients treated for chronic Lyme disease or post–Lyme disease symptoms." Source
QUOTE- "Although anecdotal evidence and findings from uncontrolled studies have been used to provide support for long-term treatment of chronic Lyme disease,18-20 a response to treatment alone is neither a reliable indicator that the diagnosis is accurate nor proof of an antimicrobial effect of treatment." Source
QUOTE- "It is highly unlikely that post–Lyme disease syndrome is a consequence of occult infection of the central nervous system." Source
QUOTE- "dditional evidence against the hypothesis that chronic symptoms are due to persistent infection is the fact that antibodies against B. burgdorferi in many of these patients are undetectable, which is inconsistent with the well-established immunogenicity of the spirochete's lipoproteins." Source
QUOTE- "Although B. burgdorferi can develop into cystlike forms in vitro under certain conditions that can be created in the laboratory,50 there is no evidence that this phenomenon has any clinical relevance." Source
QUOTE- "How should clinicians handle the referral of symptomatic patients who are purported to have chronic Lyme disease? The scientific evidence against the concept of chronic Lyme disease should be discussed and the patient should be advised about the risks of unnecessary antibiotic therapy. ... If a diagnosis for which there is a specific treatment cannot be made, the goal should be to provide emotional support and management of pain, fatigue, or other symptoms as required. Explaining that there is no medication, such as an antibiotic, to cure the condition is one of the most difficult aspects of caring for such patients. Nevertheless, failure to do so in clear and empathetic language leaves the patient susceptible to those who would offer unproven and potentially dangerous therapies. Additional advice to clinicians is included in the Supplementary Appendix, available with the full text of this article at www.nejm.org." Source
QUOTE- "Physicians and laypeople who believe in the existence of chronic Lyme disease have formed societies, created charitable foundations, started numerous support groups (even in locations in which B. burgdorferi infection is not endemic), and developed their own management guidelines." Source
QUOTE- "Chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections. Other examples that have now lost credibility are “chronic candida syndrome” and “chronic Epstein–Barr virus infection.”57,58 The assumption that chronic, subjective symptoms are caused by persistent infection with B. burgdorferi is not supported by carefully conducted laboratory studies or by controlled treatment trials. Chronic Lyme disease, which is equated with chronic B. burgdorferi infection, is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments for it is not warranted." Source