On May 10, at its first major fundraiser held at the River Oaks Country Club in Houston, the Texas Lyme Disease Association honored Dr. Daniel Cameron and Dr. Charles Ray Jones for their compassionate care of Texas patients and pioneering work in Lyme disease.

Find out more about Texas Lyme Disease Association.

Joyce Cate had finished playing tennis one day in early May of 2010 when she realized she was far more fatigued than normal. By the time she returned home to Westmoreland after a grocery shopping trip, she was more worn out.

“I felt like a dish rag,” she said. Within the next couple of days, she noticed her neck and shoulder were very stiff and sore. “I thought I pulled something,” she said.

It was the beginning of her six-month bout suffering from the symptoms of Lyme disease.

For the six weeks that followed that day — she remembers it was May 4 — her health steadily deteriorated.

“I’m healthy; I’ve led an athletic life,” she said. “I’m not one to easily be put down.”

Fatigue and muscle aches were her most prevalent symptoms. She also had a constant dull headache and nausea: she lost 17 pounds that month.

Six weeks later, after two trips to the emergency room at Cheshire Medical Center/Dartmouth-Hitchcock Keene for stomach issues, she asked for a blood test that would determine if she had Lyme disease. She insisted on the test at the suggestion of her friends, who told her that her symptoms sounded like those caused by Lyme. The test came back positive.

Lyme disease is caused by the bacterium Borrelia burgdorferi, spread — mostly in New England — by the bite of the deer tick. It was first identified in the U.S. in Lyme, Conn. in 1977. More than 20,000 cases of the disease are reported in the U.S. each year.

Data collected by the N.H. Department of Health and Human Services shows there were more than 1,342 cases reported in New Hampshire in 2010, 29 of those in Cheshire County — those numbers are more than double the number reported in 2006.

More than 60 percent of deer tick samples taken that same year in Cheshire County were infected with the Lyme disease-carrying bacterium.

Cate believes she wasn’t diagnosed with Lyme disease sooner because she did not have the telltale “bulls-eye” rash, a large circular rash that develops around or near the site of a tick bite within the first month in about 80 percent of Lyme disease patients. She never felt or saw a tick bite.

Although Lyme disease can affect anyone, those who spend time in wooded or grassy areas are at greater risk, because of the increased exposure to ticks.

The symptoms Cate suffered two years ago are typical of Lyme disease. Others are flu-like symptoms (chills, fever, swollen glands) and facial paralysis (Bell’s palsy).

Symptoms usually begin within a month of exposure, but onset ranges from three to 32 days.

Standard treatment for early Lyme disease (within the first six months) is a 14- to 28-day course of the antibiotic doxycycline — Cate had a 21-day dosage of the drug.

Dr. Jodie Dionne-Odom, who works in the infectious disease section at Dartmouth-Hitchcock Medical Center in Lebanon, emphasized seeing a doctor as soon as symptoms manifest or if the bulls-eye rash appears.

“If you have a tick bite or if you’ve been hiking or outdoors recently and have symptoms, don’t wait,” she said. “The treatment has the most effect when it’s early.”

If Lyme disease is left untreated for a few weeks or months, complications such as meningitis, arthritis and heart abnormalities may occur and other body systems (including the brain, digestive and respiratory systems) may be affected.

About 20 percent of patients may experience long-term symptoms after treatment.

Although this patient population does not benefit from an extra course of antibiotics, Dionne-Odom said, controversy surrounds how to treat them.

These patients suffer from post-treatment Lyme disease syndrome, often called chronic Lyme disease. Symptoms can be similar to acute Lyme disease such as fatigue and joint pain, and include neurological issues such as decreased concentration and memory disorders.

Medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology and the National Institutes of Health say there isn’t an effective treatment for chronic Lyme disease. Their consensus is that any long-term symptoms are not related to Lyme disease but to other conditions.

Dr. Daniel Cameron, who operates a primary care practice in Mt. Kisco, N.Y., disagrees. He is a member of the International Lyme and Associated Diseases Society, a group of health care professionals involved with Lyme disease since the late 1980s. The nonprofit group advocates greater acceptance of chronic Lyme disease in the medical community.

He said a few studies have shown the effectiveness of antibiotic treatment for chronic Lyme disease, but they were conducted using too small number of patients to change guidelines.

Cameron began treating patients with chronic Lyme disease in the late ’80s. In 1990, he read a report by Allen Steere, a former Yale University professor of rheumatology credited with discovering and naming Lyme disease in the ’70s.

The report, published in the New England Journal of Medicine, outlined neurological Lyme disease, with long-term symptoms including poor memory and concentration, sleep disturbance and irritability.

Cameron treats chronic Lyme disease patients with neurological issues such as depression, anxiety and attention deficit hyperactivity disorder as he would treat a patient with fatigue or joint pain — with a longer course of antibiotics.

These patients are conventionally treated with other medications that treat the symptoms and not the underlying disease, Cameron said.

Likewise, patients who suffer from chronic Lyme disease symptoms such as fatigue and muscle and joint pain might be diagnosed by their primary care physician with fibromyalgia or chronic fatigue.

“These patients are usually frustrated that they can’t get better,” Cameron said. “When these symptoms persist, they’re sent to another specialist.”

Cameron uses a holistic approach, encouraging a low-carbohydrate, low-sugar diet and exercise.

Dr. Jeffrey Greenfield, who practices osteopathic medicine at his family practice in Manchester, also prescribes a diet low in sugar and high in protein and vegetables along with immune system-boosting herbs like garlic to his chronic Lyme disease patients.

Also a member of the International Lyme and Associated Diseases Society, he treats these patients with a longer course — at least a month — of antibiotics. Often, he will treat the patient for other infections that can go along with Lyme disease, such as babesiosis. The disease is caused by a parasite, babesia, found in one in three ticks in New Hampshire.

“It mimics the symptoms of malaria,” Greenfield said.

It doesn’t respond to doxycycline because it’s not a bacterium — instead, he treats it with anti-malarial drugs.

Greenfield said treating chronic Lyme disease is a hard pill to swallow for the majority of the medical community, which is reluctant to prescribe antibiotics long-term.

“These are not benign medications,” he said. “They can cause significant side effects,” including gastrointestinal issues, yeast infections and liver dysfunction.

Chronic Lyme disease sufferers need to weigh the pros and cons of taking antibiotics long-term. Cameron said about 80 percent of his patients with chronic Lyme disease improve after treatment.

Those who tests positive once for Lyme disease and receive treatment are not immune to becoming infected with it again. These patients can receive a prophylactic dose of doxycycline within the first 72 hours of a tick bite to prevent infection from a new bacteria.

“It’s not a treatment,” Dionne-Odom said. “It’s to keep the disease from setting in again.”

Cate took a dose of doxycycline last week after she found a tick crawling inside her pant leg after working in her garden.

The Centers for Disease Control and Prevention offer tips for preventing a tick bite while outdoors, including walking in the center of a hiking trail, tucking pants into socks and shirts into pants, using insect repellent containing 20 percent DEET, bathing as soon as possible after coming indoors, keeping grass short at home, removing leaf litter and creating a wood chip or gravel barrier where the lawn meets the woods.

People should also examine their hiking or camping gear and pets for ticks, which can attach to a person later. Any remaining ticks found on clothing can be killed in a clothes dryer on high heat.

If a tick is attached to your skin for less than 24 hours, your chance of getting Lyme disease is extremely small. But to remove a tick, you should do so with a tweezer as close to the skin as possible to the attachment site, being careful not to squeeze or puncture the body of the tick.

The attachment site should be disinfected with rubbing alcohol or an antibacterial wash and hands should be washed with hot water and soap.

Of course, people should be alert for any signs or symptoms of illness.

Dionne-Odom’s most important tip is to check the body for ticks once indoors after each time spent outside. That includes under the arms, in and around ears, inside the belly button, behind the knees, between the legs, around the waist and in the hair.

Cate is playing tennis again and feels back to her normal self, but she will never forget what it was like suffering from the symptoms of undiagnosed Lyme disease.

“It was six horrible, horrible weeks,” she said.

<p><a href=”http://www.sentinelsource.com/life_and_style/health_fitness/lyme-season-ticks-are-here-and-they-can-bring-disease/article_7b97e506-fe6d-50ef-9bf0-380b4bb8ab7b.html” target=”_blank”>View article</a></p>

View Article: http://www.timesunion.com/local/article/A-tick-behind-all-of-the-tics-3392738.php#ixzz1snAnGaO0

For 90 minutes, the standing room crowd of more than 200 watched the movie, “Under Our Skin.”

When it was over, Dr. Daniel Cameron, an epidemiologist from Westchester County, N.Y., complimented the film for not only following the plight of a few Lyme Disease sufferers but also for looking at the handful of doctors engaged in aggressively treating it and also getting a reality check from the medical community that was/is at odds with their perspective.

“Very seldom are you able to so well capture what the challenges are that we face,” Cameron said. “It’s nice to have a movie that sets the stage.”

“Besides giving you a glimpse of people suffering from Lyme disease trying to get better, you also see how three doctors are treated by their respective state’s medical boards,” Cameron said.

For 90 more minutes, Cameron took questions from the audience, but before they got started asked for a show of hands as to how many in the crowd had Lyme disease.

Nearly half raised their hands.

It was noted that more cases of Lyme disease are reported in Pennsylvania than any other state in the nation.

Lyme disease is a condition that masks itself as other illnesses, and many people don’t realize they may have it.

That’s the message that organizer Robin Lynn of Tunkhannock said she wanted to get across by hosting the program.

Lynn said she believes she has had Lyme disease for decades, but it has only been in the past 10 years that she has known for sure.

Lynn said having dealt with the symptoms of the disease for most of her life, she hopes the information will enable people to get treatment early.

“I want others to be able not to suffer what I went through,” she said.

According to the Lyme Disease Association, Lyme disease is a bacterial infection that is usually contracted through being bitten by a deer tick. The ticks that carry the disease are extremely small, and it is possible for one to bite someone without that person noticing it until much later.

In their earliest stages, the symptoms of Lyme disease mimic other diseases, with more than three dozen known symptoms, which can include fever, stiff neck, dizziness, vertigo, bad headaches and nausea.

Too often, Cameron said, doctors don’t look for Lyme disease, and end up treating people for more common and less serious conditions.

“Doctors are seeing the symptoms, but they are not looking beneath that presentation that Lyme disease could be behind the whole illness,” he said.

Therefore, instead of patients getting the treatment they need, Cameron said they are being medicated for conditions they don’t have.

Some common misdiagnoses Cameron mentioned are chronic fatigue syndrome or fibromyalgia in adults, and attention deficit disorder in children.

“It’s a shame when someone presents with Lyme disease and doesn’t get treated in time,” he said.

Left untreated, Lyme disease can develop from its original acute form into a chronic condition that gradually eats away at the body, Cameron said.

He noted, however, that he has encountered and the film very pointedly portrayed colleagues who don’t accept this view.

“There are doctors around who have taken the position that there is no such thing as a chronic form of Lyme disease,” he said.

One suggestion Cameron makes is that people should observe if treatments a doctor prescribes are working. If after a month the symptoms persist, he says patients should ask their doctors if Lyme disease could be playing a part.

And if a doctor won’t consider that option, Cameron said to get a second opinion.

The questions from the audience addressed issues of symptoms, tests, diet, vaccines and even if it was reckless for someone who has Lyme disease to subsequently get pregnant.

“That’s a tough one,” Cameron said, starting to explain a range of issues. He stopped himself to say that it’s almost the same issue a couple is wrestling when you consider breastfeeding a child.

“I can tell you I have seen many women with Lyme who have gone on to have babies which have grown up and live successfully,” Cameron said.

Although there was a table of literature at the program, the organizers also said some websites are also helpful.

Lynn oversees http://aroundtheworldwithlyme.org/ which addresses matters of interest to northeast Pennsylvania and beyond.

LymeActionPa.com keeps the public informed about public policy matters in Pennsylvania including legislation now before the General Assembly: House Bill 272 and Senate Bill 210.

LymeProject.com is Dr. Cameron’s website that explores many of the issues he discussed Saturday, and deals with every day.

Lyme disease facts

Lyme disease often brings a skin rash that has a bull’s-eye appearance, as well as fever, fatigue, headache, muscle aches and joint pain. Left untreated, symptoms can worsen. In later stages, Lyme disease can cause neurological and cardiac problems, intense joint pain and other serious sympto

To prevent Lyme disease and other tick-borne illnesses, avoid places where ticks like to hide, including woods, fields and areas with overgrown brush. Using insect repellent, wearing hats and light-colored clothing so ticks can be spotted easily and checking yourself, family members and pets after leaving areas where ticks might be can help reduce the risk of getting Lyme disease.

View article: http://wcexaminer.com/index.php/archives/news/28321

Bethesda, MD  – Members of the International Lyme and Associated Diseases Society  (ILADS) highlight a newly published article entitled Perspectives on Chronic Lyme Disease, as yet  another example of the need for more dialogue between physicians, researchers and other health  professionals regarding the existence and diagnosis of chronic Lyme disease. The American Journal of  Medicine article ignores ILADS’s concerns regarding the serious health problems faced by chronic  Lyme disease patients.  

The opinion piece, authored by Philip J. Baker, cites research studies considered inconclusive by a  number of health care professionals.  The findings are based on a small number of subjects relative  to the growing number of Lyme disease cases reported annually.  Baker’s conclusions are based on  trials of fewer than 225 patients.  Yet the CDC reported 20,000 new cases of Lyme disease in 2007;  the actual number of people diagnosed with Lyme disease is estimated at 10 times this number.

ILADS has consistently challenged the peer review literature that fails to consider the severity of  chronic Lyme disease.  The Lyme disease patients enrolled in the two NIH sponsored trials  mentioned in the article were ill an average of 4.7 years with a quality of life worse than patients  with recent heart attacks and diabetes.

ILADS stresses the need for more comprehensive trials to examine the numerous innovative  antibiotic options that have been used successfully in actual practice.

ILADS believes the medical community must come together to address the needs of patients who are  suffering from the debilitating effects of chronic Lyme disease.  Only by airing different points of  view will the medical and scientific community reach a better understanding of controversial topics  such as chronic Lyme disease.

“What we have here is a failure to communicate,” noted Cameron.  “We must work together to find  answers for Lyme patients who remain severely ill.”

For more information contact Pam Kahl. pam.kahl@verbal800.com 503.284.1534

http://www.ilads.org/files/2008/press_AJM_statement.pdf

August 5, 2007

Around 30 patients and family members gathered for the fourth annual Lyme Disease Symposium. The high-profile keynote speakers included Pat Smith, president of the Lyme Disease Association; Dr. Brian Fallon, the director of the Lyme and Tick-borne Diseases Research Center at Columbia University Medical Center, and Dr. Daniel J. Cameron, an internist, epidemiologist and clinical researcher.

The physicians described an evolving but still incomplete understanding of the disease. There’s not even a way to determine when, or if, a patient is cured. "A blood test is not helpful to say when Lyme disease is over," Cameron said in response to a parent’s question. "There is no test to say, "’I'm done,’ or ‘I’m half done’." He noted that many of the biological markers that are elevated in Lyme disease are also elevated in other conditions.

Lyme disease wreaks devastation on the human body. Its cause arthritis in children and adults, neurological problems such as fatigue, memory loss, migraines and searing pain, and psychiatric symptoms including depression, dementia, panic attacks and obsessive-compulsive disorder.

The disease has been around for decades; Cameron recalled that an investigator found evidence of the bacterium in some mouse ears in the Museum of Natural History that dated from the 1920s or ’30s. But recently Lyme has begun to spread.

Smith cited United Nations studies "linking an increase in previously suppressed infectious disease with … global environmental changes." Forest fragmentation has contributed to a loss of predators such as wolves and birds of prey that held the white-footed mouse population in check. The deer tick, which transmits Lyme disease, feeds on deer but doesn’t get the infection from them, Cameron observed. The tick gets infected from mice.

A four-year World Health Organization study concluded that "deforestation and climate-induced habitat change" are affecting the carriers of diseases such as malaria and Lyme disease, Smith said. Studies found that Lyme disease is prevalent in rural Senegal, Mali and Mauritania. A report from Sweden noted that ticks are now found near the Arctic Circle. Lyme disease is the most common vector-borne disease in the United States.

The divisions in the medical community over Lyme disease begin with diagnosis and extend to treatment. The criteria that the Centers for Disease Control and Prevention use for surveillance include: a case with a "bull’s-eye" rash greater than five centimeters or a case with at least one manifestation (cardiac, neurological, musculo-skeletal) that is confirm by laboratory testing – a positive ELISA (enzyme-linked immunosorbent assay) followed by a test known as a "Western blot."

Some doctors are unwilling to make a diagnosis of Lyme disease unless the symptoms meet the CDC’s guidelines. Others, including those at the symposium, believe the criteria are too narrow and exclude many patients who are infected. As a result of these differences, there are now two sets of treatment guidelines, a set developed by the Infectious Diseases Society of America, and those that Cameron wrote for the International Lyme and Associated Diseases Society.

The CDC states that its surveillance criteria are not intended for diagnosis:

"Surveillance case definitions establish uniform criteria for disease reporting and (1) should not be used as the sole criteria for establishing clinical diagnoses; (2) should not be used in determining the standard of care necessary for a particular patient; (3) should not be used as setting guidelines for quality assurance or providing standards for reimbursement."

One result of the misuse of the surveillance criteria, Smith said, is that health insurance plans deny payment for treatment of patients who don’t meet the narrow standards. (In the case of chronic Lyme disease, treatment can run to tens of thousands of dollars.) When insurance plans do pay, they typically base payment on the guidelines developed by the Infectious Diseases Society of America, which call for briefer and less expensive treatment. The issue has become so contentious that in Connecticut, where Lyme disease was first identified, the attorney general has issued a "civil investigative demand" against the society, charging that the guideline developers had a commercial interest in them.

Fallon, who is the director of a four-year study of brain imaging and treatment of persistent Lyme encephalopathy funded by the National Institutes of Health, noted some of the tantalizing leads suggested in the study’s first year, such as the possibility of a test that may predict who will get better with several weeks of intravenous antibiotic treatment. Other findings are puzzling. The center has confirmed that repeated antibiotic treatment helps patients, but, Fallon said, "We don’t know why it’s happening."

A member of the audience asked, given the uncertain state of knowledge, if the doctors would suggest a course of action for people who suspect they have Lyme disease.

"It’s important to find out what the options are at the first visit with the doctor," Cameron said. "Even if the doctor says they’re only going to have one plan, not to treat unless they get a Western blot, it’s nice to know there are alternatives."

Cameron recommended going back for a follow-up visit 10 days later if symptoms persist. "The doctor may change his mind or look deeper," he said.

Cameron’s third suggestion was that if a person still feels sick but doesn’t have the diagnostic bull’s-eye rash, to "make sure you don’t get dismissed too quickly" and involve a neurologist or other specialist. "There are different perspectives on how to treat it," he said.

Fallon added that if symptoms involving more than one system are present, such as depression and joint problems, Lyme disease is likely to be the cause. "There are not many things that can cause brain problems and joint problems at the same time," he said. On the other hand, he said, if there’s no pronounced fatigue, it’s probably not a persistent Lyme infection.

The doctors had few concrete answers to a father’s question about why some patients get better and some relapse, other than to note that the longer the gap between infection and treatment, the greater the likelihood of relapse.

Dr. Stephanie Holzman, a veterinarian and one of the organizers of the symposium, said she had some answers, "as a vet and a Lyme disease patient." Holzman sees dogs and horses with Lyme disease that have "all sorts of symptoms or lack of symptoms," she said. If a dog comes in with kidney failure, she knows it will die. Other dogs come in limping because of an affected joint and after being treated with doxycycline, "They’ll never look back." A horse with joint pain will survive, she said, but will never race again. "One of the hot topics at conferences is why we see so much variation in symptoms."

Before she was infected with Lyme disease, Holzman ran three marathons. "I’m never going to do those activities again," she said. It took her 18 months to get diagnosed, and by the time she started treatment, her joints were damaged.

Holzman said she was helped by doctors who "collaborated and networked" in treating her. "I’m not where I was, but I’m a lot better," she said. "It stinks not to be a racehorse anymore, but you can still have a really good life."

Source: timesargus.com  

Chronic Lyme cases take time

 HISTORIC HEARINGS ON

MOST CONTROVERSIAL DISEASE IN U.S.

LYME DISEASE: SPOTLIGHT ON A HIDDEN EPIDEMIC

Lyme Patients Gather in D.C. and Around the World to Push for Better Treatment and Recognition of Chronic Disease

Story Summary:

What happens if tick-borne illness is missed, or left untreated? Millions of patients say they suffer from chronic (or long-term) Lyme disease. But gatekeepers in medical community refuse to recognize illness.

Connecticut Attorney General sued gatekeepers (Infectious Diseases Society of America, or IDSA), forcing the oversight panel to review its controversial treatment guidelines that bar patients from getting chronic Lyme disease diagnosis and necessary treatment.

Hearing to review long-suppressed scientific evidence that Lyme disease can become persistent and debilitating.

Lyme disease patients from around the world will watch the DC-based hearing via webcast and participate in an international Twitter chat to share reactions.

(Washington D.C.) – It’s a pivotal moment in the heated medical debate surrounding Lyme disease.  Controversial treatment guidelines which chronic Lyme patients say keep them from being properly diagnosed and treated will be reviewed in a landmark hearing held Thursday, July 30 in Washington D.C.   Lyme disease is the fastest growing infectious disease in the United States today, affecting up to 300,000 Americans each year.  Many think the tick-borne illness is easily cured, but what happens when it’s missed initially or improperly treated? Patients and many of their doctors argue Lyme becomes chronic—or long term.

“The medical establishment will be forced to consider the strong scientific evidence that Lyme disease can become a persistent, long- term infection that may require more aggressive treatment than what is allowed under the current treatment guidelines,” says Dr. Daniel Cameron, President of the International Lyme & Associated Diseases Society (ILADS). Cameron will be among several doctors, scientists, and patients testifying at Thursday’s hearing.

The Infectious Diseases Society of American (IDSA) is holding this hearing in response to an antitrust investigation by Connecticut Attorney General Richard Blumenthal. In his groundbreaking lawsuit, AG Blumenthal charged that IDSA’s guidelines for Lyme disease prevent many seriously ill patients from getting necessary treatment. A 2008 settlement resulted in IDSA’s agreeing to create a new panel to review its guidelines.

Doctors treating Lyme disease aggressively with long-term antibiotics are targeted by medical boards and insurance companies and may lose their licenses.   The Connecticut Governor recently signed into law legislation that would permit physicians to determine what treatment is best, in effect overruling the current IDSA guidelines.

“These current guidelines have had a devastating impact on patients,” says Dr. Joseph Jemsek, Infectious Disease Specialist in South Carolina—and a member of both IDSA and ILADS.  “In the midst of the healthcare reform crisis, these hearings offer a microcosm of a broken healthcare system.”

The media is invited to a Lyme Watch Media Center, where they can interview patients, advocates, and doctors in response to the webcast hearings. The Center is in the Congressional Room on the lobby level at the J.W. Marriott Hotel, 1331 Pennsylvania Ave. NW, from 8am to 5pm.

MEDIA INQUIRIES:  ILADS President Dr. Daniel Cameron and Lyme disease patients are available for interviews.   For more information contact: Marc Silverstein at (202) 716-9123 or at marc@onthemarcmedia.com

From  Leslie and Tracy’s website at Lymefighters.org

THANK YOU MY WONDERFUL, BEAUTIFUL  SISTER, FOR BLESSING ME WITH 41 YEARS OF YOUR LIFE.  YOU’VE SUFFERED WITH LYME AND TICK-BORNE ILLNESS FOR SO LONG.  PLEASE WATCH OVER ME AND GIVE ME STRENGTH, AS I FIGHT THIS BATTLE 

"IN MEMORY OF YOU".

LESLIE RAE WERMERS

DOB: 07-07-1967

PASSED AWAY – 11-02-2008

LOVING SISTER; DAUGHTER; AUNT; PARTNER, PARENT AND FRIEND.

YOU HAVE TOUCHED SO MANY.

View a video tribute from Under Our Skin