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1. Lyme disease - SPECIAL REPORT
2. Sairastuneet kertovat kokemuksistaan ja virhediagnooseistaan. Video kestää 8 min:
FACES OF LYME - FULL VIDEO: The Poughkeepsie Journal met with people who have been diagnosed with advanced cases of Lyme disease. Here, they share their symptoms, search for a diagnosis and hopes for treatment. Video by Chrissie Williams
Lyme Disease: Antibiotics fuel debate
5 doctors targeted; chronic treatment at issue
Enemy No. 1 in the war on Lyme disease is a tiny tick that has put the mid-Hudson Valley at the epicenter of a global health threat.
But the prime target of some is not an army of arachnids, as ticks are known. Instead, in this bull?s-eye is a handful of doctors ? doctors who dispense long-term antibiotics for the illness. At least five, including two in Dutchess County, are under investigation by state licensing officials, the Poughkeepsie Journal has exclusively learned.
While officials contend they do not investigate physicians ?simply because ?traditional? treatment protocols (two to four weeks of antibiotics) are not followed,? the medications are at the heart of a vitriolic and far-reaching debate over how best to care for advanced Lyme disease, according to interviews with scientists, physicians, patients and their advocates.
The disagreement has marked the disease as a political and scientific quagmire, these people said. Most importantly, it has hampered access to care for Lyme sufferers ? in both early and later stages of the disease.
?I had been struggling since 2009 to get diagnosed with Lyme,? said Dina Rosado, 44, of Highland, who suffered seizures, vision loss, pain and anxiety before receiving intravenous antibiotics from the 12th doctor she saw. ?The word Lyme is taboo to a lot of doctors. They don?t want to touch it.?
The story told by Rosado, who was sometimes bedridden and estimates she is 70 percent better after months of intravenous and oral antibiotics, echoed that of other long-term Lyme patients who said they saw six, 10, even 14 doctors before getting a diagnosis.
They were told, variously, they did not have Lyme, they suffered multiple sclerosis, fibromyalgia or rheumatoid arthritis, or, even had a mental disorder.
?Just because they are treating you like you?re not sick doesn?t mean you?re not sick,? said Antonia McVicker, 26, who contracted the disease while living in Ulster County and had two of 10 doctors refer her for psychiatric care. ?It?s the only medical issue where you have half the doctors against the patient.?
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Such physicians would argue that these patients merely found a doctor willing to name their malady Lyme and treat it with antibiotics. But the patients? experiences, coupled with some key scientific research that chronic Lyme believers say has been ignored, suggest they may be on to something.
?I think there is evidence that repeated antibiotic therapy can be helpful,? said Brian A. Fallon, a psychiatry professor and director of the Lyme and Tick-borne Diseases Research Center at Columbia University Medical Center in New York City. ?We don?t know enough about therapeutic approaches that are helpful ? to start accusing doctors of doing the wrong thing when studies have not been done.?
Jill Auerbach, a Lyme patient and chairwoman of the Hudson Valley Lyme Disease Association, argues that doctors should err on the side of treatment: ?Do you leave these ill patients untreated and send them away when there is still no scientific consensus??
The mid-Hudson Valley has the nation?s highest rates of Lyme disease, a health threat complicated by emerging evidence of other infections carried by ticks. More than 26,000 cases of Lyme disease were reported in Dutchess and Ulster counties from 1992 to 2011, with estimates that tens of thousands more have gone unreported. Dutchess had the most cases of any county nationwide from 2002 to 2006, the latest statistics show.
Because it has such high disease numbers, the valley has some of the most experienced Lyme physicians, who often receive cases from far-flung states. As such, a national debate about so-called chronic Lyme disease is playing out, almost literally, in our backyards, with patients ? and doctors ? square in the middle.
?Just about every physician in the state who cares for people with chronic Lyme is currently under investigation,? said a local physician among five over whom the state quietly opened investigations in the past 18 months. ?It?s very threatening.?
No doctor would publicly acknowledge ongoing investigations ? on the advice of attorneys, for fear of alienating state monitors and because such probes are a sensitive issue for any physician.
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At the root of Lyme patients? struggle for care is a contentious debate over how best to diagnose Lyme disease, the reliability of laboratory tests and the precise definition of chronic Lyme.
On one side is the prevailing medical wisdom, codified in guidelines of the Infectious Diseases Society of America, a 9,000-member physician organization, that the Lyme bacteria are killed off by 14- to 28-day courses of antibiotics. The guidelines, adopted by the U.S. Centers for Disease Control and Prevention, are based largely on a 2001 study that found no meaningful improvement and no active infection in 129 chronically ill Lyme patients after 90 days of antibiotic re-treatment.
The patients? severe, lingering symptoms, from arthritis to neurological impairment, were real, the study concluded, but were not due to live Lyme bacteria. Most physicians follow the guidelines closely, in particular as nonconforming doctors have been targeted for discipline.
On the other side, however, are doctors and patients who maintain they have seen improvement, in sometimes dire cases, after longer, often repeated, courses of oral and intravenous antibiotics. Their view is bolstered by animal studies showing that the bacteria, a spirochete like syphilis, survived initial antibiotic treatment in dogs, mice and monkeys, suggesting the need for more treatment. Additionally, two small studies showed short-lived improvement with antibiotics in people who had already been treated once.
The debate over chronic Lyme disease ? what the CDC calls ?post-treatment Lyme disease syndrome,? affecting 10 percent to 20 percent of patients ? reflects two polar viewpoints on Lyme: On one hand, it is a disease that is difficult to catch and easy to cure; on the other, it is a long-term threat that withstands medicine?s best pharmaceutical defense.
A key player in this fray is the state Office of Professional Medical Conduct, which oversees physicians and is obliged to investigate all complaints against them. Statistics show half of 8,501 complaints filed for all reasons in 2010 came from the public, and a small number, 3 percent, were filed by insurance companies, which are feared and viewed with suspicion by doctors who treat chronic Lyme disease.
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?Physicians who care for patients with chronic Lyme disease are often ?red-flagged? by insurance companies? for incurring big costs, said Dr. Kenneth Liegner, a Pawling Lyme specialist, at a May conference at Skidmore College in Saratoga Springs. They ?risk being subjected to sanctioning and ?de-selection? if they participate with insurance companies.?
Hence, many don?t, requiring considerable upfront payment ? from $650 to $1,800 ? that limits care to those who can afford it. Treatments are also costly: about $750 a month for drugs and supplies alone, some covered by insurance, plus $1,000 to $3,000 to insert an arm catheter that feeds drugs to the heart.
While costs are hefty, there is no evidence that insurers have reported Lyme doctors ? complaints are confidential ? and two companies declined requests to comment. One physician said state licensing officials began a probe just after a claim for antibiotic treatment was questioned by an insurer. At the same time, the licensing office itself was found to have contacted patients of a Dutchess County physician several years ago to encourage them to file complaints, two sources with direct knowledge told the Journal.
State officials could not say how many doctors have been censured; three probes are known. In 1999, a Lyme physician?s license was revoked after charges of ?gross negligence? and ordering excessive treatment. (The revocation was reversed in 2010.) In 2002, a physician was found negligent and was sentenced to two years of licensing probation. Both practiced on Long Island. In 2007, a Dutchess doctor settled undisclosed ?nondisciplinary? charges and faced no suspension.
Jeffrey Hammond, a spokesman for the licensing board, part of the state Health Department, said in an email, ?OPMC does not investigate physicians because they use long-term antibiotics to treat Lyme disease. Generally speaking, OPMC has disciplined physicians for negligence in the treatment of the Lyme disease.?
But for licensing officials, treatment outside the official guidelines may be the same thing, observers believe.
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?If every question (by state overseers) is how you treat Lyme disease, you are against these long-term treatments,? said Assemblyman Joel Miller, a Poughkeepsie Republican involved in the issue since the 1990s and who has been in contact with physicians under investigation.
'Witch hunt' alleged
Unlike Massachusetts, Connecticut, Rhode Island and New Hampshire, New York does not have a law to protect physicians who treat Lyme disease with long-term antibiotics. But in 2005, under pressure from state legislators such as Miller, the medical-conduct office issued a memorandum on Lyme treatments ?that are not universally accepted.?
?It is contrary to the policy and practice of the office ? to identify, investigate or charge a physician ? solely on that practitioner?s recommendation or provision of such a treatment modality,? it stated.
Miller said the memo is not being followed and called the new probes a ?witch hunt.? Miller, U.S. Rep. Christopher Gibson and Assemblyman Richard Gottfried, D-Manhattan, have discussed the probes with the state health commissioner or licensing director, both of whom declined an interview through a spokesman.
Physicians who treat chronic Lyme say that medicine is sometimes an art as much as a science that calls for practitioners to try things in the service of healing. Some use oral or intravenous antibiotics or a combination, sometimes ?pulsing? drugs in a week-on, week-off rotation. Some add alternative therapies and vitamins.
?Ultimately, you have to use your clinical judgment as a physician,? said Dr. Daniel Cameron of Mount Kisco, Westchester County. He said he frequently finds long-term oral antibiotics successful and prescribes intravenous drugs if needed.
At an outpatient clinic at Vassar Brothers Medical Center, about a quarter of patients receiving intravenous medications are under treatment for Lyme disease, many for longer periods than the guidelines suggest. The guidelines, essentially treatment recommendations, do not preclude such care.
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?I?ve watched people come in who couldn?t walk,? said Carmela Legari, the infusion center supervisor. ?You can watch the symptoms slowly dissipate.?
Such observations may be common in chronic Lyme circles, skeptics say, but are not science.
?If you are saying something works,? said Dr. Phillip Baker, executive director of the American Lyme Disease Foundation, ?it?s incumbent on you to provide evidence that it works.? (Typical of the debate, there are several warring organizations, with Baker?s on one side and the Lyme Disease Association on the other.)
The drawbacks to antibiotic treatment are potentially serious side effects. One patient had a life-threatening pulmonary embolism and another had intestinal bleeding, studies show, while the intravenous line has led to infection. But Lyme-treating physicians argue that antibiotics have been used for long periods for other diseases such as tuberculosis and say they limit intravenous use to a small fraction of cases.
The question is how much and how long for Lyme. Patients interviewed varied from repeated two-month courses to up to a year of intravenous treatment, with varying results, and up to three years of oral medications.
Dr. Steven J. Bock, a family doctor and alternative practitioner in Rhinebeck, said he has treated 7,500 Lyme patients; he initially resisted the idea of antibiotics as an adherent of complementary medicine like acupuncture and herbs, which he also uses.
?When someone has been sick with a lot of multiple symptoms,? he said, ?and then they go on antibiotics longer than the usual but they turn out on the other end 95 percent better ? that to me is a clinical success.?
He acknowledged that some respond better than others.
Dr. Kari Bovenzi, one of few pediatricians who treat advanced cases of Lyme disease, believes longer antibiotic courses are necessary to beat back the hearty Lyme spirochete.
?There is something about this bacteria ? it is a survivor,? said the Albany physician, who began treating Lyme after her own bout in 2009. ?It took lots of antibiotics and other treatments for me to feel I could think again.?
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Dr. Richard Horowitz of Hyde Park, who has treated more than 12,000 Lyme patients, the majority from outside Dutchess, said the naysayers are wrong.
?They are basically saying Lyme is easily diagnosed, easily treated and (those with lingering problems) are dealing with an auto-immune reaction,? said Horowitz, who lectured on Lyme in China recently at the request of the Chinese government. ?Unfortunately, that?s not true.?
?Re-treatment (with antibiotics) does help patients,? he said. ?There?s not even a doubt that re-treatment helps.?
Horowitz believes that many Lyme cases go undetected because of unreliable testing; others resist treatment because of co-infections from other bugs carried by ticks, such as babesia.
While so-called Lyme-literate physicians may have substantial success, their evidence is mostly anecdotal. At the same time, their diagnoses are often clinical, based on symptoms rather than blood tests, which they say are conflicting and imprecise.
?I have seen many, many patients referred and treated for chronic Lyme disease and for chronic co-infections,? said Dr. Gary Wormser, an infectious disease physician at New York Medical College in Westchester County who has published widely on tick-borne diseases. ?Almost invariably the patients have never had any evidence of ever having had Lyme disease or a co-infection.?
Wormser, more than anyone, is the voice and face of efforts to portray the Lyme bacteria as easily killed off with antibiotics, while maintaining that remaining symptoms are from other causes. Wormser led the Infectious Diseases Society panel that wrote the Lyme guidelines that are so controversial today.
?There?s no evidence in North America of persistence of the spirochete after treatment,? he said. ?We?ve published on it and we?ve looked.?
Anyone prescribed prolonged antibiotics for Lyme or a co-infection, he wrote in capital letters in an email, should get a second opinion from ?A MAINSTREAM MEDICAL PRACTITIONER.?
At a congressional hearing on Lyme disease in July, called to explore its global implications, Stephen Barthold, a professor of veterinary medicine at the University of California at Davis, testified that animal studies are clear.
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?Experimental studies, using a broad spectrum of animal species (mice, dogs, monkeys) and a variety of antibiotics, have all shown a failure to completely cure the animals? of Lyme infection, he testified. Barthold, who has studied Lyme disease for 25 years, detected the presence of Lyme spirochetes using unconventional methods not used on humans. These included letting uninfected ticks bite animals to see if they became infected and, after euthanasia, harvesting samples of tissue where Lyme is suspected to hide.
?These surviving spirochetes are not simply ?DNA debris? as some contend, but are rather persisting, but non-cultivable, spirochetes,? he told members of Congress, who are considering legislation to form a Tick-Borne Disease Advisory Committee that would coordinate federal response and, it is hoped, resolve the conflict over chronic Lyme disease.
Wormser said the studies ?are being over-interpreted? and the animals weren?t given antibiotic doses comparable to humans, which Barthold disputed.
While both sides agree that more research needs to be done, the society?s guidelines, which ascribe many lingering Lyme symptoms ?to the aches and pains of daily living,? hold fast. They survived a 2008 investigation by then Connecticut Attorney General Richard Blumenthal, who said the disease panel ?blocked appointment of scientists and physicians with divergent views on chronic Lyme? and had members with financial interests in ?drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies.?
Blumenthal?s report led to a second panel and hearing where, among others, a Brown University statistical analysis was presented on four human Lyme studies. An author, Allison DeLong, said the primary study on which the guidelines were based suffered from ?substantial statistical problems that prevent its use in formulating treatment guidelines.? Other studies, which challenged the guidelines, had ?no problems with their statistics or interpretation,? she testified.
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Nonetheless, the panel upheld the guidelines in 2009 as ?the highest-quality medical/scientific evidence? ? while noting they were not intended to be ?rigid dicta, inflexible rules, or requirements of practice.?
As the debate has played out in science journals and Internet chatter, advocates, patients and Lyme-treating physicians said it has had an unfortunate upshot: It has scared off doctors from prescribing antibiotics for Lyme disease.
?Doctors are not treating at the first sign,? said Mary Belliveau, a retired nurse who runs a Lyme disease support group in Rhinebeck. ?They say, ?Wait to see if symptoms develop.??
Pam Weintraub, a former Westchester resident and journalist who wrote a book called ?Cure Unknown? on her family?s years-long Lyme struggle, said doctors are ?intimidated from even looking for Lyme disease.? Why? ?Fear that they would be investigated.?
Gibson, who with Smith and Blumenthal is sponsoring the legislation to form a federal advisory committee on Lyme disease, said New York needs to change priorities.
?The focus should not be going after doctors,? he said. ?Some (patients) are getting treated. But the issue is there aren?t enough doctors that are treating them.? He said the guidelines should be changed and doctors made ?privy to some of the successful protocols.?
Lyme patients, meantime, believe it shouldn?t be so difficult to get the antibiotics they believe have helped them.
?I thought I was dying, and then all of sudden you start to gradually feel better,? said Doreen Peone, 51, of Saugerties, who was on intravenous treatment for a year.
?No one will ever know what Lyme pain is like,? she added, ?until they experience it.?