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American Lyme Disease Foundation, Inc.

American Lyme Disease Foundation, Inc.
P.O. Box 466
Lyme, CT 06371

News & Announcements

Former NIH Lyme disease expert Dr. Phillip Baker is the new Executive Director of ALDF


Dr. Phillip Baker, Ph.D. has recently been named as Executive Director of the ALDF by a unanimous vote of the Board of Directors. "We are thrilled to have Dr. Baker bring his vast expertise and leadership to our organization," says Jeffery Black, acting Chair. Dr. Baker has more than 30 years experience as a research scientist for the National Institutes of Health and 10 years as the Program Officer for the Lyme disease research grants awarded to academic and medical research institutions by NIH. Dr. Baker is truly a scientific expert and knowledgeable of the facts about Lyme disease.

"At a time when misinformation is rampant, I am proud to continue to serve the interest of public health by heading the American Lyme Disease Foundation," states Dr. Baker. In his first official role as Executive Director, Dr. Baker has published a paper in the July issue of The American Journal of Medicine, rebutting the unsubstantiated claims of "chronic Lyme" among a small but vocal group of activists who challenge the results of mainstream medical research.

The ALDF Board of Directors also approved three new additions: Gary Wormser, M.D. of the New York Medical College, Eugene Shapiro, M.D. of the Yale University School of Medicine, and Peter Krause, M.D. of the University of Connecticut Medical Center. According to Black, "These new members not only bring top-notch researchers in the field of infectious disease to the Board, but also physicians with years of hands-on experience treating patients with Lyme disease. They are leaders in the field and will prove invaluable to the ALDF effort of educating physicians and the public.&quot

Dr. Baker can be contacted at ExecDir@aldf.com.

Press release.


Updated guidelines on diagnosis, treatment of Lyme disease released by the Infectious Diseases Society of America

In response to growing concern and confusion about Lyme disease, the Infectious Diseases Society of America (IDSA) has updated its Clinical Practice Guidelines on the disease, in order to provide guidance to physicians and patients based on the latest scientific evidence. Read about updates to the Clinical Practice Guidelines here: IDSA Press Release.

Access the new IDSA Guidelines for Lyme Disease here: IDSA Guidelines


Now is the time to take precautions against Lyme disease
June is peak season for Lyme disease in the Northeast and Midwest where nymphal deer ticks are most abundant. Nearly all of the cases will be acquired within the next three months. You can prevent Lyme disease by avoiding tick infested areas. Where there were adult deer ticks earlier this spring, there are now nymphal stage ticks which are much harder to see. If you know you will be exposed to deer ticks, there are some important precautions to consider. Insect repellents offer effective protection against deer ticks. Use products with permethrin on clothing and products with DEET on exposed skin. If you find ticks on pets, clothing, or people around your home, repellants may not be practical for preventing tick bites. Lawns, gardens and other areas of frequent usage can be treated with insecticides to kill nymphal deer ticks. A single application now will reduce tick numbers by up to 95% for the rest of the nymphal tick season. Granular formulations can be easily applied by the average homeowner. Commercial applicators experienced in tick control can also be employed, but be cautions about over-treating. One application now is all that is necessary. For more information on tick control visit the website of the Connecticut Agricultural Experiment Station where research on this subject has been done.


Spirochete transmission poster: how long has that tick been feeding on you?
This poster provides information on the probability of spirochete transmission as a function of the length of time that a tick feeds on a person. Photographs of nymphal I. scapularis ticks with a corresponding scale will aid physicians considering treatment of patients presenting a tick removed from the skin. A single 200-mg dose of doxycycline given within 72 hours after a tick bite can prevent the development of Lyme disease.
(N Engl J Med 2001;345:79-84.)

Large Poster (11" X 17")
Small Poster  (8.5" X 11")


Early Lyme disease: do you have an EM?

A recent publication in the New England Journal of Medicine (June 2006) describes symptoms, diagnosis, and treatment of early Lyme disease (LD) for patients with the most common symptom of early LD: a skin rash called erythema migrans (EM). The EM occurs in approximately 90% of early Lyme disease patients.

Symptoms: An EM most often appears as a solid red expanding rash or blotch, but it can also occasionally appear as a central spot surrounded by clear skin that is in turn ringed by an expanding red rash (looks like a bull's-eye). Rashes will often appear on the armpit, groin, back of the knee, and nape of the neck (areas where ticks love to bite). The EM may be accompanied by the following symptoms: fatigue, pain in the joints or limbs, numbness, tingling, headache, neck pain, facial nerve palsy, aseptic meningitis, or heart block. It is highly uncommon to observe respiratory or gastrointestinal symptoms.

The EM may be confused with initial hypersensitivity reactions to tick saliva. When a tick bites a person, its saliva comes into contact with the immune system. Some people have an immediate immune response to this saliva which results in a small rash. On the other hand, EM rashes usually appear seven to fourteen days after the tick bite. The EM may also be confused with skin lesions originating from Southern Tick Associated Rash Illness (STARI).

Diagnosis: A full-body skin exam should be performed to look for EM rashes. Patients with an EM and a recent travel history to regions where LD is endemic can be diagnosed with early LD. Antibody testing is not recommended during the early stage of Lyme disease because of the high false negative rate (up to 60%). The ELISA and Western-blot blood tests (recommended by the Centers for Disease Control and Prevention) are considered more reliable and accurate when performed at least a month after initial infection, although no test is 100% accurate.

Treatment: Refer to the table of recommended antibiotics and dosages. Diagnostic testing for other tick-borne diseases is recommended for early LD patients presenting the EM rash with severe symptoms who fail to improve with treatment. The same species of Ixodes tick that transmits Borrelia burgdorferi (the causative agent of LD) also carries other bacteria such as Anaplasma phagocytophilium (which causes human granulocytic anaplasmosis) and Babesia microti (which causes babesiosis).


FDA warns "alternative" Lyme disease treatment can be fatal (July 2006)
Reprinted with permission of the Associated Press.

WASHINGTON (AP) - At least one person has died after being injected with a purported treatment for Lyme disease, health officials said Friday in warning doctors and patients to avoid the unapproved product.

The product is called bismacine or chromocine, and is mixed individually by druggists for use by injection, the Food and Drug Administration said.

The FDA is investigating the April 20, 2006, death of a person treated with bismacine, which contains high amounts of the heavy metal bismuth. The agency also is probing several reported injuries.

Bismuth poisoning can cause cardiovascular collapse and kidney failure, the FDA said. Bismuth is used in some oral drugs to treat bacteria that cause stomach ulcers, but is not contained in any approved injection drug. Nor is bismacine specifically approved for any use, including as a treatment for the tick-borne bacterial disease.

Alternative health doctors, as well as people claiming to be medical doctors, prescribe and administer the product, the FDA said.

The FDA said in a statement that it is evaluating the suppliers of the product and "will take additional action as appropriate."


N.C. board suspends license of Lyme disease doctor for one year (June 2006)
Reprinted with permission of the Associated Press.

By ERIN GARTNER
Associated Press writer

RALEIGH, N.C. (AP) - A physician accused of misdiagnosing patients with Lyme disease had his medical license suspended for just one year Thursday despite emotionally charged testimony from patients who accused the prominent Charlotte doctor of negligence.

Dr. Joseph Jemsek, known for his treatment of AIDS patients, had also been accused of failing to inform his patients that his method of treatment - prolonged doses of intravenous antibiotics - was not in line with medical standards.

The state Medical Board ruled that Jemsek had committed unprofessional conduct in the manner he treated several patients and that he had breached informed consent, board president Dr. Robert Moffatt announced. The one-year suspension will be similar to a probationary period, the conditions of which will be determined when Jemsek meets with the board in July. Until then, he can continue to practice.

"I get affirmation every day I walk through the clinic from people who say 'Thank God you do this,'" Jemsek said before the ruling was announced. "I have hidden nothing about what I do."

Jemsek, who declined additional comment after the ruling was read, testified Thursday that mistakes his office made in the past had been corrected, a statement that didn't sit well with board member Dicky S. Walia.

"You may have been getting better, but you had patients that were being used," said Walia, a Raleigh real estate developer, echoing concerns from other board members.

Outside the courtroom, reaction was emotional from both critics, who said Jemsek experimented on unknowing patients, and supporters, who said Jemsek was the only doctor who successfully treated ailments other doctors misdiagnosed as multiple sclerosis, depression, even cancer.

"This is definitely a win for us. Out of all the possible things they could have done, I think this is the best possible outcome," said Beth Jordan, a Raleigh veterinarian and founder of the North Carolina Lyme Disease Foundation.

Before the ruling was read, Joseph Jabkiewicz, whose wife Kathy died after receiving treatment from Jemsek, was hopeful Jemsek would lose his license.

"I just don't want him to hurt another person," said Jabkiewicz, a 47-year-old father of twin boys.

The decision by the 12-member panel came late Thursday after expert witnesses for Jemsek told the board that treating chronic Lyme disease can be difficult. Symptoms are often vague and the bacteria that causes the disease reacts differently to drugs than does other bacteria, said Dr. Steven Phillips, a Lyme disease expert in private practice in Wilton, Conn.

Jemsek said he was treating chronic Lyme disease, a form of the illness the medical establishment doesn't believes exist, with intravenous antibiotics for months or years. The standard treatment for Lyme disease is 28 days of oral medication, according to expert testimony Wednesday.

Medical board lawyers, who act like prosecutors in the case, brought charges against Jemsek based on 10 cases in which his patients were either not tested or tested negative for Lyme disease through the standard medical test approved by the Centers for Disease Control and Prevention.

Of those cases, at least four were still patients who had written letters in support of Jemsek. But one case was Jabkiewicz's wife, a pediatric intensive care nurse who Jabkiewicz said had violent convulsions for which she was hospitalized multiple times while seeking treatment from Jemsek.

One of their sons found his mother the day she died in 2004, after the family filed for bankruptcy because of mounting medical bills, Jabkiewicz said.

Phillips testified that he agreed with Jemsek's diagnoses of Lyme disease after reviewing all 10 cases, despite the lack of positive test results. Under questioning from board members, Phillips said he prescribed intravenous drugs sparingly and for no longer than a few months in his own practice but supported long-term antibiotic use for Lyme disease patients.

"I'm not opposed to long-term intravenous antibiotics. I think the risk-benefit ratio is not so wonderful, but it is still a standard among doctors who treat Lyme disease and it works for some patients," he said.

Dr. Brian Fallon, a Lyme disease expert at Columbia University in New York, testified that a study he conducted found that 10 weeks of intravenous antibiotics decreased the disease's symptoms of fatigue and physical pain, and improved brain blood flow and metabolism.

Patients participating in Fallon's unpublished study tested positive for the illness and had other symptoms of Lyme disease as defined by the CDC.


LYME DISEASE EXPERTS: BUTT OUT, BLUMENTHAL (MARCH 2007)

By WILLIAM HATHAWAY And HILARY WALDMAN
Hartford Courant

Attorney General Richard Blumenthal has long been a prominent fixture in the impassioned debate over how best to treat Lyme disease.

But a delegation of experts say they want to know why Blumenthal keeps butting in on what they see as the wrong side of that debate -- and they want him to stop.

The researchers, from Yale University and the University of Connecticut, are meeting with Blumenthal today in a bid to convince him that he has been misled by advocates who argue that treatment with long-term antibiotics can alleviate the possibly debilitating symptoms associated with the tick-borne disease.

The scientists hold the more mainstream view that the benefits of attacking Lyme with months and months of antibiotics have never been proven -- and could be dangerous. They see Lyme as a bacterial infection that can be simply diagnosed and, in most cases, easily treated with a three-to-four-week course of antibiotics.

"To have good science questioned by the attorney general is very disturbing,'' said Durland Fish, a professor of epidemiology at Yale University.

The latest round in the battle was touched off in November when Blumenthal acknowledged that he had launched an antitrust investigation into the Infectious Diseases Society of America's development of treatment guidelines for Lyme disease.

The guidelines say in most cases a 30-day course of oral antibiotics should be sufficient to cure the disease.

Advocates on the other side of the debate argue that researchers have ignored evidence that Lyme disease can persist for years and require treatment with antibiotics for six months or longer.

Although treatment standards for most illnesses are developed by experts in the field, Blumenthal argued that the process used by the infectious disease society to develop its guidelines was anti-competitive and may have excluded valid scientific research.

Blumenthal said his investigation has uncovered "conflicts of interest that are credible and powerful.''

For instance, the chairman of the infectious diseases panel that developed the guidelines, Gary P. Wormser, of the division of infectious diseases at New York Medical College in Valhalla, has received consulting fees from Baxter, a company that is developing a Lyme disease vaccine.

It is possible that Baxter might benefit from the new guidelines, Blumenthal said.

Wormser's relationship with Baxter is disclosed in a journal article outlining the guidelines, as are other potential conflicts of interest of panel members involving consulting fees, patent rights and involvement with existing businesses.

Blumenthal said he is concerned the guidelines could prompt insurance companies to deny payment for long-term antibiotic treatment -- a therapy some doctors and patients insist is the only way to help people with intractable Lyme-like symptoms.

The attorney general's position on the issue has put him at odds with people like Fish, one of the authors of the infectious disease society's guidelines, and Dr. Lawrence Zemel, professor of pediatrics at the University of Connecticut and chief of the rheumatology division at the Connecticut Children's Medical Center.

They believe the indiscriminate use of antibiotics can harm patients.

They also note that some doctors make a lot of money prescribing dangerous, long-term antibiotic treatments costing $50,000 or more to desperate patients with no valid evidence that they have Lyme.

The meeting "is really to educate [Blumenthal] about what's science and what is non-science,'' Zemel said. "Frankly, what Mr. Blumenthal is basing this on is non-science.''

Blumenthal counters that he is not questioning the guidelines or advocating any medical position. He said he is only investigating whether the researchers who drafted the guidelines excluded scientific evidence that might support long-term antibiotic use to treat Lyme.

"I am not qualified to make scientific judgments,'' Blumenthal said. "I am only interested in the process.''

But Fish and Zemel say that, for nearly a decade, Blumenthal has encouraged the perception that he favors the "long-term Lyme'' camp by appearing at charity fundraising events or rallies organized by advocates who believe Lyme disease often becomes a chronic disease.

Blumenthal "is a hero to the Lyme community,'' said Diane Blanchard, co-president of Greenwich-based Time for Lyme. "You cannot continue to ignore an entire population of sick people. What are you going to do? Leave patients suffering?''

In 2005, Blumenthal presented an award to New Haven Dr. Charles Ray Jones, who later became the subject of a state disciplinary hearing for allegedly prescribing antibiotics to a child in Nevada without seeing the patient.

Jones has received an outpouring of national support from Lyme disease groups because of his willingness to treat patients suspected of having chronic Lyme with long-term antibiotics.

"Is there a perception that I am advocating a position? Yes,'' Blumenthal acknowledged. But he insisted the perception is incorrect.

Although Blumenthal says he has taken no position on Jones' disciplinary battle, national publicity about the hearing and his own antitrust investigation have fanned the flames. The Lyme debate has been raging almost since the very first tick-borne spirochete was identified in1983 as the culprit in a rash of arthritis cases in Lyme, Conn., in the 1970s.

There is broad agreement on this much: Most infections of Borrelia burgdorfi, the bacterium that causes Lyme, can be easily cleared up with relatively short courses of antibiotics if treated early after infection.

But after that, common ground is difficult to find.

The long-term Lyme camp believes that the infection can survive early antibiotic treatments and at low, sometimes undetectable levels, cause a host of persistent and debilitating symptoms collectively known as chronic Lyme -- fatigue, muscle palsy, arthritis and neurological and cognitive deficits.

Doctors and advocates on that side of the debate argue that standard diagnostic tests often miss the presence of Lyme, leaving it woefully under-diagnosed. Affected patients, they say, needlessly suffer for years although long-term courses of antibiotics would cure them.

They point to studies that suggest bacteria can persist after treatment, and that additional courses of antibiotics can help and should be covered by insurance companies.

But a majority of doctors say there is a clear lack of evidence to support those positions.

They say most patients who have been treated for Lyme and remain ill probably have other treatable diseases such as depression, multiple sclerosis, rheumatoid arthritis or Parkinson's.

Zemel says patients with no evidence of Lyme infection can suffer on two fronts from long-term antibiotic use.

They may develop antibiotic resistance, and their doctors may overlook the real cause of their illness.