Doctors’ War on a Tiny Bloodsucker

Horror stories from patients: vertigo, paralysis, and now red-meat allergy
Dr. George Dempsey examined cells under a microscope last month in his East Hampton office. He has indicated a need for more participants in an international study on tick-related diseases. Carrie Ann Salvi

    “It’s been a crazy year for ticks,” George Dempsey, M.D., said at his East Hampton office late last month. “Several new cases a week.” Dr. Dempsey is now participating in an international research study of Lyme disease. “I’m excited to start getting some results. I think after the summer we will have some preliminary information. The more info we get the better.”
    Working in the office formerly occupied by Dr. Joseph Burruscano, whom he called “the Holy Grail of Lyme disease,” Dr. Dempsey said, “We have 10 subjects . . . it would be nice to get 20.” In order to take part in the study, patients need to have a “brand-new case and a fresh new rash.” After a visit with Dr. Dempsey — with the tick, if possible — patients can be treated by whomever they wish, he said.
    Not only has the doctor noted an increase in Lyme cases this year compared to previous years, he has detected an increase in other tick-related infections. He has also noticed that those with the “bull’s-eye” rash are tourists more often than year-round residents. He guessed that “many of them probably go back to the city and don’t know what is going on. The population has increased out here,” he said, and many people “are not aware of prevention measures.”
    “I couldn’t walk, I couldn’t really hear,” said Marissa Fanelli, who lives on Shelter Island and has had Lyme disease and related infections since she was 15. Experiencing severe vertigo, fatigue, and pain because of nerve damage in her throat and ear in her 30s, she went to “doctor after doctor,” who suggested she had multiple sclerosis, lupus, and even a brain tumor before she was finally diagnosed with bartonella, a tick-borne disease, after meeting a facial-pain specialist while attending dental hygienist school in New Jersey.
    For years, tick-related illnesses have been misdiagnosed as other diseases with similar symptoms, such as loss of facial muscle tone, severe headaches, neck stiffness, and shooting pains.
    “If left untreated, it can result in severe debilitation and death,” warned Jesse A. Stoff, M.D., who spoke about Lyme to a little over 20 people at the Wild by Nature market in Hampton Bays last month. He has seen the complexities of the disease in the several new cases he encounters weekly at the East End Wellness Center in Riverhead. Dr. Stoff showed slides of bacteria in the spirochete family, explaining that they are hard to kill because of phased life cycles in which it lies dormant inside cells.
    Regarding other common tick-borne illnesses, like babesiosis, bartonella, and ehrlichiosis, Dr. Dempsey said, “If there are 100 with Lyme disease, 30 will have other diseases as well.”
    Charlie Mattson of Shelter Island, who has babesiosis, said in an e-mail message that the infection not only made him “feel like s*** for over a month,” but also had a strange, and increasingly common, life-changing effect: “I can no longer eat red meat,” he said. When he does, he vomits and sweats for three days. Some doctors think the symptom results from developing an allergy to animal protein. Mr. Mattson now has to “watch everything I eat, and most barbecues don’t have much in the way of chicken.”
    Because there are several strains of bacteria with different protein patterns, Dr. Stoff explained, all tests don’t cover all variations.
    “The lab tests are not precise,” Glenn Goodman, D.C., of Sag Harbor said. “Cutting-edge doctors will diagnose from symptoms, not lab tests.”
    Dr. Stoff believes that “the ultimate test is a culture,” but the culture is slow-growing, and it can take up to five weeks to obtain results.
    Bringing the tick along to the doctor’s office is helpful, Dr. Dempsey said. “If we know what we’re looking at, it saves a lot of grief. Many ticks are not a problem . . . just because they’re small doesn’t mean it’s a deer tick. It can be a baby tick.”
    “I haven’t heard of any Lyme cases that are fatal,” he said. But other tick diseases and co-infections can be. He said ehrlichiosis is the worst, but that babesiosis can be very severe as well. “They are so sick,” he said of people with ehrlichiosis, which “blood work doesn’t always pick up. . . . I’m tipped off just by seeing them, but it is treatable.”

The Cost, the Numbers
    Even with an IV for aggressive antibiotic treatment, Ms. Fanelli still suffers from constant nerve pain, fatigue, and brain fog (which she called “Lyme brain”). “The cost,” she said, “is ridiculous.” Last year, she spent more than $26,000 in medication alone, not including weekly blood tests and doctor visits. “Insurance companies don’t pay without a positive test,” she said. “We have to fight for better testing.” From her research and experience, she said, “most Lyme tests are negative.”
    Working to educate herself and help others, Ms. Fanelli attends conventions held by “Lyme-literate doctors” and has traveled to Washington, D.C. “It’s horrific,” she said of the long-term symptoms, which in her support group of “Lymies” range from eye problems and arthritic pain to immune system disorders and even permanent paralysis. “It’s a lot more serious than people think. This time last year, I didn’t think I was going to make it.”
    Ms. Fanelli found that she needed help from the Tick-Borne Disease Alliance, which supports initiatives to find cures and raises money for health practitioners who want to be educated about the latest research and co-infections.
    Dr. Dempsey suggested donations to TimeforLyme.org for research into chronic Lyme conditions. “We have some great technology,” he said. “We can distinguish DNA by means that we couldn’t before, to find the genetic sequence down to the exact nucleic acid. . . . Ticks carry numerous diseases,” he said, “I don’t make many assumptions.”
    The number of Lyme disease cases must be confirmed by a lab, Dr. Dempsey said, as it is a reportable disease, but only Suffolk County as a whole is tabulated: At a rate of 1,000 per two million people, the numbers don’t reveal the intensity of infections on the East End, particularly since in Suffolk “half a million never get near a tick.” He said it was essential to find better ways of diagnosing and identifying all diseases in ticks.

When a Tick Is Found
    Although many ticks are simply too small to be detected, if a tick is found on the body, “safe removal is important,” Dr. Stoff said. Some recommend using iodine or olive oil to help release the tick’s grip on the skin, he said, but removal should involve tweezers. “Grab it just below its rear enlarged part, as close to the head as possible. Pull it straight out in one piece with gentle traction” while trying to avoid squeezing the blood of the tick into your system.
    There are several schools of thought on treating Lyme disease, Dr. Stoff said. “If you live in a high-risk area, my recommendation is to take the antibiotics. . . . I’m not a huge fan of drugs in my practice, but I have not found any research indicating anything besides an antibiotic that can kill the bacteria.”
    “It’s critical to pile in tons of probiotics,” he added. However, “ongoing antibiotics will not work,” Dr. Stoff said, for what he called post-Lyme syndrome — symptoms virtually identical to the initial illness but that appear after Lyme is successfully treated. “There are tests for post-Lyme syndrome which look at inflammatory markers in the blood.”
    Dr. Stoff’s treatment plan, designed to “get the immune system back,” often includes progressive allergy desensitization to stimulate the balance of fighter T-cells. He also recommends supplements, including fish oil and vitamins C and D. He said there was a “huge difference between natural and synthetic stuff.” Diet, digestion, sleep, and avoiding stress are crucial.
    Dr. Goodman uses herbs that “have extensive historic application as anti-microbials, and we also use homeopathic remedies.” His goal is to use remedies that provoke “regenerative nutritive action” to re-establish the immune system. Dr. Goodman has a practice with his wife, Dr. Suzanne Kirby, that offers alternatives and complementary approaches.
    “I am not against the use of antibiotics,” he said. “However, there are instances where they are inadequate or ineffective.” He explained that in addition to killing bacteria, “the remedies help the cell to both eject the stored toxins and provide it with nutrients to increase the cell’s function.”
    In Dr. Dempsey’s office, if a patient has a rash, “call it Lyme and treat it.” He said that most doctors will follow standard infectious disease guidelines, with antibiotic treatment ranging from 10 to 21 days, depending on the size of the rash and the severity of the symptoms.
    Dr. Jerry Simon, who used to work with Dr. Burruscano, has a practice in that office as well, offering alternative treatments. “We are trying to treat it from all sides,” Dr. Dempsey said. “It is an art, leave it to us.”
    According to Dr. Burrascano’s Web site, “Despite antibiotic treatments, patients will not return to normal unless they exercise. . . . A properly executed exercise program becomes part of the treatment, as it can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.”

Prevention
    Prevention is something all residents could be better acquainted with, Dr. Dempsey said — wearing clothing treated with permethrin designed to withstand 60 wash cycles, for instance.
    “Stay out of the high grasses,” Dr. Goodman said, “and do the tick checks.”
    Dr. Stoff warned against “dogs and cats that go outside and then come inside and bring ticks. . . . You can get Lyme disease from your own bed.” He said those with pets should have them wear tick collars and treat them with tick dip. “Do not let them into your bedroom.”
    Dr. Dempsey’s long-term study is open to every age and gender, as long as participants have a rash, which he will biopsy. The organisms in the skin are analyzed for types and strains, and blood is drawn to be sent to a laboratory in California — “the only one in the world that does it,” he said. The research has been funded by a grant from the National Institutes of Health and sponsored through the State University of New York, the Rockefeller Institute, and the New Jersey School of Medicine. The study is being replicated near John Hopkins University in Baltimore and also in the Midwest.
    Another way to help, according to Dr. Dempsey, is to push for financing for the United States Department of Health and Human Services. “It does not have the funds,” he said. “Science, that’s what I am into. We still have a lot to sort out.”


Comments

I been dealing with Lyme for over 20+ years, a former patient of Dr. Burrascano and a patient of Gerry Simons, I have found the most effective treatment for the disease is Samento & Banderol, which have been proven to kill more spirochetes then dioxicyline. Read the following paper to get more information on this study. http://www.townsendletter.com/July2010/sapi0710.html
May be you should see a psychiatrist, not so claimed "lyme disease specialist". There is no such thing as "chronic lyme". This article is biggest medical fraud I ever so published.
Congratulations to Dr Dempsey Dr Stoff and Dr Simon for their ongoing research in Tick Borne Diseases nd their service to the residents of the 6z9v3Eastern End of Long Island Alan B. MacDonald. MD
Great article!! Keep up the good work!!
This article is ridiculous. Its a scam. There's no such thing as chronic a psychiatrlumen. All this patients should see a psychiatrist and not a "lyme disease specialists". The claim that you can enhance immune system is bogus.
I have had lyme's disease or a recurrance five times. I was treated all five times with antibiotics. They worked. I have had no lingering symptoms and having moved from the area, never had it come back. I think the "after effects" of this disease just suit people's needs. A "claim to fame" issue.
i am very interested in participating in this study. thanks for risking criticism & opening up a controversial dialogue!
Feds arrest Riverhead doctor for Medicare fraud By Grant Parpan and Vera Chinese | 09/22/2011 8:45 AM | North Shore Sun Riverhead doctor Jesse Stoff was arrested Sept. 7 in connection with a Medicare fraud scandal at his former practice in Queens.Dr. Jesse Stoff has maintained a high profile in the media while practicing at East End Wellness Center, an alternative medicine facility in Riverhead where he serves as medical director. News 12 Long Island made him the subject of a half-hour special on his unique treatment of allergies. In July, Hamptons.com mentioned his appearance at an East Hampton fundraiser for the Stem Cell Research Foundation. He has even maintained a medical advice blog for the local news website Patch.com over the past several months.But one thing about Dr. Stoff has managed to remain under the radar all this time: his past. Dr. Stoff was previously the medical director at Solstice Wellness Center in Rockaway Park, N.Y., a facility that was shut down last May following a federal investigation into Medicare fraud that has led to the arrest of more than 90 people in six states.Earlier this month, Dr. Stoff and two others became the most recent suspects charged in the massive sting, which uncovered more than $295 million in Medicare fraud nationwide. The Medicare Scheme Federal prosecutors are alleging Dr. Stoff gave kickbacks on payments received through Medicare to patients he treated for “medically unnecessary” services at his former practice in Queens. He then made cash payments from January 2009 to April 2010 to two patients for referring other Medicare beneficiaries to Solstice Wellness Center, according to the charges. Dr. Stoff, 55, was arrested in Queens by federal agents Sept. 7 following a grand jury indictment on charges of conspiracy to pay and receive health care kickbacks, six counts of health care fraud and one count of health care fraud conspiracy. He pleaded not guilty to all charges at his arraignment in Eastern District Court of New York that day and was released on a $250,000 bond. A receptionist at Dr. Stoff’s Roanoke Avenue office, which is lined with shelves of vitamins and supplements as well as Buddha and other religious statues, said he was working at the office Tuesday. Dr. Stoff declined to speak to a reporter. Dr. Stoff’s Manhattan-based attorney, Andrea Likworni Weiss of Levi, Lubarsky & Feigenbaum LLP, said her client maintains his innocence. “He is not guilty of those charges, that will be established in court,” she said Tuesday, declining to elaborate further on the charges and other aspects of his past. The indictment alleges that Dr. Stoff and his colleague, Dr. Billy Gervis, conspired with patient recruiters Ilya Gershkovich and Palageya Kotelsky to pay kickbacks to a small network of Medicare beneficiaries to present themselves as patients at Solstice, where they were “prescribed medically unnecessary services such as physical therapy and diagnostic tests.” The doctors then filed claims with Medicare for reimbursement on those services and others they never performed, according to the indictment. Maria Nakhbo, 72, a Medicare beneficiary and a patient of Solstice, was also arrested this month and charged with one count of conspiracy to pay and receive health care kickbacks and one count of making false statements. THE WAVE COURTESY PHOTO | Dr. Jesse Stoff, left, at a 2009 ribbon cutting for the former Solstice Wellness Center in Rockaway Park, N.Y. At right is Dmitry Shteyman, who owned the practice, and has already pleaded guilty in the Medicare fraud scandal. According to a prior indictment that led to the arrest of several other key players in the scheme at Solstice Wellness Center, more than $2.8 million in Medicare claims were filed at the facility between February 2009 and April 2010. What tipped federal investigators off to the excessive Medicare billing practices at Solstice was a one-month period in 2009 when more than $800,000 was billed to Medicare by Dr. Stoff. An undercover federal agent then posed as a patient at the facility and was paid $300 for his five visits there, according to the 2010 indictment of Solstice Wellness Center owner Dmitry Shteyman, who pleaded guilty in June and is expected to be sentenced next month. At a May 2010 press conference, federal prosecutors said the payouts at Solstice Wellness Center and other facilities were often done in a “kickback room.” In one Brooklyn facility, prosecutors said a Cold War-era poster was hung warning patients in Russian not to gossip about the scheme. Run-In With the FTC According to news reports and government records, Dr. Stoff’s arrest in the Solstice Wellness Center scheme isn’t his first brush with controversy.In 2005, he was accused by the Federal Trade Commission of falsely claiming that a supplement, marketed as AG-Immune and manufactured in California, could prevent and treat numerous diseases including cancer and AIDS. Dr. Stoff, who was practicing medicine in Arizona at the time, was reportedly paid a royalty for every bottle sold. The product retailed at $50 for a one-month supply and brought in $14 million in annual sales, according to the FTC. Dr. Stoff was ordered to pay a $358,000 fine and was prohibited from making unsubstantiated claims about any food, drug or supplement, according to the settlement reached between him and the FTC. The fine was suspended due to Dr. Stoff’s inability to pay, according to the FTC. “In addition, the order requires Dr. Stoff, when acting as an expert endorser, to support his expert conclusions with both competent and reliable scientific evidence and an actual exercise of his purported expertise,” said an FTC press release. But in a statement on his personal website, dr.stoff.com, Dr. Stoff wrote that he was just a victim of circumstance as he was affiliated with the company, and never made false claims about the product. “No evidence of the FTC’s claims and assertions was ever presented and the Consent Decree supports Dr. Stoff’s contention that he simply described those products within his knowledge and experience and never made any claims relative to their usefulness other than as dietary supplements,” the statement reads. In the same case in 2005 the Federal Trade Commission, the Orange County, Calif., District Attorney and the California State Attorney General reached a settlement with the product’s manufacturer, Body Wise International, for $2 million to be paid to the FTC and $1.58 million to be paid to the State of California. Body Wise admitted no wrongdoing as part of the agreement. The State of Arizona had previously investigated Dr. Stoff in 2000 after five former patients alleged a number of wrongdoings, including allegations of ordering unnecessary experimental treatments without patient’s consent and failing to properly oversee his staff, according to records found on the State of Arizona website. The state found the claims submitted by those five patients were justified, according to a copy of a settlement agreement Dr. Stoff reached with the Arizona Board of Homeopathic Medicine. Dr. Stoff reached the non-disciplinary consent agreement in an effort to avoid litigation, according to the government records. The agreement prohibited him from ordering experimental treatments without first obtaining written consent from patients and required him to undergo training for medical recordkeeping and issuing diagnoses, among other stipulations. The matters were reported to the National Practitioner’s Data Bank. He voluntarily surrendered his Arizona homeopathic medical license in December 2001. Dr. Stoff graduated from New York Medical College in 1981 after receiving his undergraduate degree from Adelphi University. In addition to New York and Arizona, he has held a license to practice medicine in Massachusetts, where officials say he allowed his license to voluntarily expire in 1993. He has written several books including “Chronic Fatigue Syndrome: The Hidden Epidemic” released in 1992 and “The Prostate Miracle” released in 2000. ‘It Didn’t Feel Right’ VERA CHINESE PHOTO | Dr. Jesse Stoff was still practicing medicine at East End Wellness on Roanoke Avenue in Riverhead Tuesday though he was indicted on health insurance fraud charges earlier this month. The Riverhead News-Review was made aware of concerns about East End Wellness Center earlier this month after receiving a phone call from the mother of a 24-year-old patient who was treated by a doctor there. The woman, who lives in Rocky Point and whose name has been withheld from this story in the interest of privacy, said her daughter went to the facility for treatment of fatigue after hearing about it through a friend who was treated for allergies there. She said her daughter was diagnosed with candidiasis, a type of yeast infection, and sent home with an over-the-counter supplement that cost $75. The daughter told a News-Review reporter that during her visit, she was stuck more than a dozen times in the arm by a needle. The mother said she contacted East End Wellness asking for a refund after researching the supplement. She said she was originally told all purchases were final, but was later given the refund after warning that she would alert a local news outlet to the situation. “Something about the place immediately didn’t feel right to me,” the mother said. “The office was cramped, tight and old. It looked nothing like a facility that you’d imagine would have something to do with health.” When contacted after Dr. Stoff’s arrest, the mother said she was concerned to learn that East End Wellness could continue to operate despite the arrest of its medical director. The conditions of Dr. Stoff’s release on bond do not prevent him from practicing medicine. Those conditions do, however, prohibit him from filing Medicare claims or performing services that may later require Medicare billing. He is due back in court next February. The charge of conspiracy to pay and receive health care kickbacks carries a maximum sentence of five years in prison and a fine of up to $250,000, prosecutors said. The charges of conspiracy to commit health care fraud and health care fraud each carry a maximum sentence of 10 years in prison and a $250,000 fine per count. gparpan@northshoresun.com