Efforts to educate the Public about Lyme disease

Hi my friends,

Below is a great article about how one couple's experience with Lyme disease is being used to educate people in their community about Lyme disease. A piece of legislation has been created to promote awareness of Lyme disease. I think you will enjoy this article!

Be well,

Rick


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By Laura Dolce
ldolce@seacoastonline.com
February 11, 2010 2:00 AM

KENNEBUNK — The number of Lyme disease cases in Maine tells a story of its own: the reported cases in York County jumped 62 percent between 2007 and 2008, with the increase statewide climbing an astounding 645 percent between 2000 and 2007.

Those numbers prompted state Rep. Ed Legg, D-Kennebunk to sponsor LD 1709, a bill created to foster better awareness of the disease that has already garnered bipartisan support.
What is Lyme disease?

• Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.

• Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.

• Fewer than 50 percent of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15 percent in culture-proven infection with the Lyme spirochete.

• Fewer than 50 percent of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or "bull's-eye" rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.

Source: The International Lyme and Associated Diseases Society

Tips for preventing tick bites, courtesy of Joanne and Barry Tibbetts:

• Wear light clothing when outdoors, which will make it easier to spot a tick.

• Don't assume a trip to the mailbox is safe - ticks can be found almost anywhere.

• Be vigilant when working with purchased mulch, or when doing other yard work.

• Don't assume since the tick hasn't been attached long that you can't get Lyme. You can.

• Protect yourself with DEET-based sprays and your pets with products such as Frontline.

• Keep your yard well mowed to avoid high grasses where ticks like to hide.

• Educate yourself about Lyme disease and its symptoms.

Video:

But the numbers only tell part of the Lyme disease story. It's the people affected by the disease who bring those numbers to life, one story at a time.

Joanne Tibbetts is one of those people. The Scarborough mother of three daughters and wife to Kennebunk Town Manager Barry Tibbetts first got bitten by a tick 15 years ago when looking at houses in Alfred.

"I had no bulls-eye rash," she said. "I looked on the CDC site and I was told I had nothing to worry about."

As time went by, though, Tibbetts started to experience what she described as migrating arthritis and joint pain. Then, 10 years ago, after the family moved to Scarborough, things began to change.

"I had tremendous back pain," she said.

And worse yet was the fatigue.

"I was sleeping most of the day," she said.

As the mother to three active daughters, Tibbetts tried to find ways to work around the exhaustion. If she had to drive the girls somewhere, she would bring a pillow and a blanket and nap in the car once she got there. But as much as she tried to work around her health problems, it was clear she was struggling.

"Just being out in the garden was a big deal," her husband said. "We would try to walk a third of the way around the house and I would have to almost carry her back."

Tibbetts could barely make it to the end of the driveway without collapsing. For nine months, her husband said, she wasn't strong enough to walk to the end of their street. And the problems weren't only physical.

"I had a lot of difficulty with word retrieval," she said. "Cognitive problems."

Her doctor told her she was pre-menopausal, she said, that these things were natural as a woman got older. But Tibbetts knew better. A 2006 Lyme test showed some evidence of the tick-borne disease, but was still considered negative by Centers for Disease Control and Prevention standards. Still, it was enough to give Tibbetts some idea of what she was battling.

The Tibbetts searched for a Lyme specialist and eventually found one who was a clinical assistant research professor at Yale and a board certified neurologist. It cost them $900 for a two-hour visit and testing. But at the end of the visit, Tibbetts' tests were sent to Stony Brook University in New York and the results gave her the answer she was looking for: Lyme disease.

Today, Tibbetts is back to being able to take hikes and lead an active life, though vestiges of the disease remain. To reach this point, though, the family has spent tens of thousands of dollars of their own money to pay for extended antibiotic therapy, additional testing and homeopathic herbal remedies that Tibbetts has administered by a practitioner here in Maine.

They've educated themselves so thoroughly on the disease that when Barry Tibbetts was bitten by a tick in 2006 and began to exhibit symptoms over the next few years — despite a negative Lyme test — they knew they had to look beyond that initial test for an answer.

Barry Tibbetts had a Western blot test, which measures your body's response to certain antigens in the bloodstream. While the CDC mandates that a patient has to have five out of six particular bands on the test for a diagnosis of Lyme, his doctor saw enough in the results to conclude that he, too, had the disease.

The Tibbetts' story is all too familiar to Kennebunk's Linda Pearson. She, too, had a tick bite 17 years ago on Martha's Vineyard and was vigilant in watching for a bulls-eye rash that never came. Months later she was talking to a woman at a party about the extreme pain in her knees when the woman asked, "Have you ever been checked for Lyme?"

Pearson was, and after a positive test, went on antibiotics for a month. But once she stopped the medicine, her symptoms came back. She would repeat this pattern of treatment followed by a re-emergence of symptoms over the next several years, through a move to Maine and raising her sons. The pain — in her neck, in her legs — was bad, but she said the "brain fog" she experienced was even worse. And worse yet, she saw the same symptoms in her kids.

Today, Pearson said the family is working with an osteopath and taking Chinese herbal remedies and focusing heavily on their nutrition.

"We're doing a lot of immune-building things," she said, adding that while antibiotics fight the bacteria, it often goes dormant, only to strike again a few months later. Building the immune system, she said, gives you one more layer of protection of the disease.

Joanne Tibbetts said she, too, has discovered the same thing. She said everything from probiotics, thyroid medication and hormone therapy can be used to treat Lyme — if it's properly diagnosed.

Between the recurring nature of long-term Lyme and its ability to mimic other illnesses, from Chronic Fatigue Syndrome to fibromyalgia, it can be a hard disease to diagnose and treat.

That's why both Tibbetts have spent time in Augusta recently, speaking out on behalf of Legg's bill. Legg himself said he feels the bill, which will name May as Lyme disease awareness month in Maine and change some local protocols for reporting and detection, will be a good first step in bringing more Lyme awareness to Maine.

"It's a big step forward," he said, "but it doesn't settle the issue of how to treat long-term Lyme."

The scientific community is still divided on that, Barry Tibbetts said, both inside Maine and around the country. But while that debate rages on, the Tibbetts said they at least feel like they're doing their part to educate others that Lyme has come to Maine to stay. It's a lesson they had to learn the hard way.

"This is not the world we lived in 15 years ago," Joanne Tibbetts said. "Don't assume you're safe."

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More Lyme disease controversy

Hello friends,

For those of us who have Lyme disease, the controversy concerning the use of long term antibiotics to treat us is very important. Here is another article that explains these current issues. Thanks to our friends at New Hampshire Public Radio and especially to Elaine Grant!
I hope everyone will get involved in their respective communities to voice their experiences with this issue.

Be well,
Richard

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Lyme Disease Controversy Comes to the Capitol

By Elaine Grant

Created 02/01/2010 - 17:47

Teaser:

Lyme patients say whether doctors feel free to treat them as they wish is a life or death problem. Some scientists disagree.

Synopsis:

One of the most vitriolic debates in medicine has come to the State House.
Desperate Lyme Disease patients say they are fighting for their lives.
They say doctors who treat their illness with long-term antibiotics are persecuted by the medical establishment.
They want lawmakers to pass legislation that they say will free doctors to treat Lyme Disease as they see fit.
On the other side are doctors equally convinced that long-term antibiotics are both ineffective and dangerous.
NHPR health reporter Elaine Grant has more.

Transcript:

For years, patients suffering from a host of symptoms that they call chronic Lyme Disease have said they encounter difficulty getting treated appropriately.

With its so-called “bucket of symptoms” that mimic numerous other ailments, Lyme Disease can be tough to diagnose.

And for a variety of political reasons, it can be even harder to treat.

Consider the case of Cathy Kettman, a fifty-six year old mother of four from Bow.

Several years ago, she went to the hospital with chest pains – but tests showed no heart disease.

She developed numerous other symptoms, and for five years she searched for a diagnosis.

Cathy Kettman: They sent me to neurologists, endocrinologists, rheumatologists, they sent me to Dartmouth, they sent me back and forth for nine months to Brigham and Women’s looking for a tumor, they were trying to rule out MS and lupus.”

At one point, she was so crippled that her husband had to carry her to the bathroom.

When they asked her family doctor to test her for Lyme Disease, the doctor refused to treat her.

Finally, a doctor in Maine diagnosed her with chronic Lyme.

And that’s the first point of contention in the debate over how to treat these patients.

At issue in the scientific community is the question of whether or not long-term, or chronic, Lyme Disease actually exists.

The Infectious Disease Society of America is a group of 8,000 doctors that sets the generally accepted medical standards for about 50 infectious diseases.

The IDSA says there’s no such thing as chronic Lyme.

Here’s retired Concord doctor Susan Savateer representing the group, testifying before the House Health and Human Services Committee.

Dr. Susan Savateer: “As physicians, we have to be very careful not to give patients a diagnosis of LD unless they meet clinical criteria. Patients with chronic symptoms, mostly subjective, musculoskeletal pain, fatigue, memory deficits, these are common symptoms in our society.”

The Centers for Disease Control generally agrees with the IDSA.

And both groups say there is no benefit – and a great deal of potential harm -- to treating patients with antibiotics for longer than four weeks.

Dr. Paul Mead is an epidemiology chief at the CDC.

Dr. Paul Mead: “The National institutes of Health sponsored several studies to evaluate, well, do antibiotics make these people better? And the answer was, not more so than placebo.”

Furthermore, Mead says, both the antibiotics and long-term use of intravenous drugs can cause a number of serious illnesses and even death.

And doctors who subscribe to the IDSA position say over-diagnosing persistent Lyme can lead them to miss other serious illnesses.

Patients could not disagree more vehemently.

The International Lyme and Associated Diseases Society directly opposes the IDSA.

ILADS says science shows that chronic Lyme is real and that long-term therapy can help.

But advocates say that, in the medical world, IDSA reigns supreme –and that causes doctors to fear following alternative guidelines.

They point to situations like that encountered by Kevin Young, a primary care physician in Plymouth.

Years ago, Young’s daughter came down with a mysterious illness.

She suffered from a variety of neurological problems including intermittent blindness, seizures, and cognitive problems.

Dr. Kevin Young: Over the next two years, she went from being honors English in high school to being unable to comprehend a newspaper article.”

Young sought help from specialists.

Dr. Kevin Young: “No one could explain her problem. During that time, I did follow IDSA guidelines. It was a scary time.”

Finally he gave his daughter antibiotics – for nine and a half years.
Today, he says she’s well.

But his treatment choice came at a professional price.

Dr. Kevin Young: A neurologist who saw my daughter not only questioned my medical judgment, but also threatened to report me for child abuse. He said due to our professional relationship over many years, he would not do that, but that does dramatize the conflict within the medical community.”

The conflict has become so nasty over the last two decades, advocates say, that doctors in many states, including New Hampshire, are afraid to treat Lyme patients.

Representative Gary Daniels: “This has had a chilling effect on the number of Lyme literate physicans who are trained or willing to treat Lyme patients…Many of our state residents are forced to travel beyond our state borders to find the treatment that they need.”

That’s State Representative Gary Daniels, a Republican from Milford.

He says doctors in other states have been prosecuted by medical boards for prescribing long-term antibiotics.

And although it’s never happened in New Hampshire, Daniels wants to make sure it won’t.

He’s sponsored a bill to protect doctors from prosecution by the Board of Medicine should they choose long-term treatment.

The New Hampshire Medical Society opposes the bill, saying physicians are already free to treat as they wish.

Lawmakers also question whether any other illness has received exemptions from medical oversight.

In response, advocates say the scientific community views Lyme differently.

And that has broader implications.

Pat Smith is president of the Lyme Disease Association.

Pat Smith: “We actually have cases where insurers have not paid for medical treatments due to the IDSA guidelines. We have cases where pharmacies have stopped giving patients their medicines because of the IDSA standards.”

Further complicating an already thorny issue is the question of the IDSA’s integrity.

Last year, Connecticut Attorney General Richard Blumenthal settled an anti-trust case against the IDSA.

According to court documents, the IDSA Lyme review panel was found to have conflicts of interest, including ties to drug and insurance companies.

The IDSA is reviewing its guidelines, but no major changes are expected.

Legislation virtually identical to New Hampshire’s passed unanimously in Connecticut last year.

Similar bills are pending in Massachusetts, Minnesota, and Virginia.

With 92 cases per 100,000 people, New Hampshire has the highest reported incidence of Lyme Disease in the country.

For NHPR News, I’m Elaine Grant.

Audio file:

NHT020110eg1.wav

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A Common Lyme Disease Story.

Hi Friends,

Here is another sad, but common story of those who are stricken with Lyme disease. This comes from our friends at the Deseret News in Salt Lake City.

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Chronic Lyme disease hobbles Spanish Fork woman

By Carrie A. Moore

Deseret News

Published: Sunday, Dec. 27, 2009 8:54 p.m. MST

SPANISH FORK — There's a price to pay when Shanon Ballard goes Christmas shopping, and it's much steeper than the exchange at the cash register.

Body tremors, slurred speech and exhaustion so severe she often spends most of the following day in bed are part of what she endures after a two-hour shopping experience. Unable to drive, she is always escorted on these increasingly rare excursions.

Pain is her constant companion.

Lyme disease — contracted from the bite of a tick no larger than a sesame seed — has ravaged her body for 15 years, Ballard said. But without the political clout of heart disease or HIV or breast cancer, people afflicted with what they believe is a chronic form of Lyme disease have no unified voice.

So when doctors tell them it's "all in your head" or insurance companies refuse to pay for long-term antibiotic treatment, Ballard and those like her either suffer in increasing pain and silence, or they seek out the few doctors willing to treat their condition.

For all her searching, Ballard couldn't find one along the Wasatch Front.

"I saw 10 to 15 different doctors," she said. "Their main diagnosis was, 'You're depressed.' They gave me Prozac and sent me on my way."

The symptoms of her illness have caused great distress that would be "depressing to anyone," said her sister-in-law, Ginny Johnson, noting Ballard had been previously diagnosed with both Crohn's disease and Parkinson's disease.

But both she and her family knew it wasn't simply a case of chronic depression.

As a registered nurse, Ballard had knowledge of and access to medical journals that allowed her to research her own condition. Following her diagnosis, she was treated for several weeks with antibiotics, which initially helped her improve.

"But I went downhill really fast after coming off it," she said.

Ballard tried short-term antibiotics again and contracted shingles last summer, which only intensified her pain and led to other, secondary complications.

As she continued seeking treatment and told several doctors of her symptoms and diagnosis, they said her case was too complex for them.

Ballard's loss of function has come in stages. It began with pain in her late teen years, followed by debilitating fatigue, digestive problems and, most recently, increasing loss of short-term memory.

In September, after her extended family members returned from a trip to Brazil, Ballard's condition had deteriorated even more.

"I think she scared everyone," Johnson said. "We hadn't seen the tremors before."

Earlier this year, as Ballard was researching Lyme disease, she came across a documentary film, "Under Our Skin: There's No Medicine for Someone Like You," which details the stories of several people whom specialists have diagnosed with chronic Lyme disease.

It details the political battle within the medical community over whether such a condition even exists — the Infectious Diseases Society of America issued guidelines in 2006 saying it does not — and how a few specialists who treat patients for it have been brought before state medical boards threatening to take away their medical licenses.

In the meantime, Ballard contacted Dr. Joseph Jemsek in South Carolina, one of the specialists featured in the documentary, who agreed to see her. During the first visit, he asked for a detailed account of her life, beginning with details of her childhood, she said.

"He wanted to know everything," Ballard said. "When I'd see other doctors, after about 10 minutes of talking, they were finished hearing from me and gave me Prozac."

Ballard said other patients who have all the symptoms of chronic Lyme disease have been similarly dismissed by so many doctors who seem unable or fearful of treating them that those who do treat patients now do so on a cash-only basis.

Many insurance companies have refused to pay for long-term antibiotic treatment for patients nationwide, and Ballard figures by the time her treatments with Jemsek are complete, the bill will total about $50,000.

Her husband works as a finish carpenter and general contractor, and to date, they've been able to handle the costs associated with her condition. But he's had medical problems of his own for nearly three months, making him unable to work.

At this point, Johnson said, Ballard's entire family is trying to raise the money to help with her treatment.

"I can't begin to tell you all the money we've spent to date, but now, all of our resources are exhausted," Ballard said.

As she remembers the long road of diagnosis after diagnosis and failed treatments over more than a dozen years, Ballard said she wants people to know the condition does exist — and that there is help available.

She believes there are many who are going through the long process she did to get a correct diagnosis, and she hopes that word of what she's been through may help some patients navigate the system a little better than she was able to.

Ballard would like the chance to continue being a mother to her three children, ages 11, 9 and 6, who have all grown up knowing their mom was different from other moms. Pent-up emotion comes to the surface as she speaks about them.

"They have been really great through all this, but there have been times when they worry I'll die," she said through tears.

Between her children and her "fantastic husband," the family has largely been able to function as they pitch in to do the work Ballard would do if her health allowed it.

Yet as painful as it has been, the experience "has brought us closer together, and I wouldn't give it up for what we've all learned," she said.

Even so, "I'm sure glad there is hope now."

Utahns with questions about chronic Lyme disease can find more information at www.utahlyme.org.

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Check out my new Website!

Hello Friends,

I hope you will check out my new Website, www.bowhuntingparadise.com. For those of you who enjoy the sport of Bow Hunting or Archery, this is the place for you. I will be adding more and more item s each week along with some new links and some new information that will help you be a better bow hunter. You can find a great selection of bows, arrows, bow sights, rests, arrow tips, and many other items. If you don't find an item on the Website that you need, please contact me and I will do my best to have the product available. Paradise is different things for different people, but for the bow hunter it is www.bowhuntingparadise.com.

Be well,

Richard

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Lyme and the use of Steroids

Hello everyone,

The past month I have somehow injured my left knee and had to see a doctor about surgery. Subsequently,, he gave me an injection of cortisone etc. to help relieve the pain until I can get in for surgery. However, as he was giving me the shot, I was remembering an article by Br. Burrascano, a well known Lyme literate doctor. The article had stated that steroids were absolutely not advised for Lyme patients. I didn't say anything, hoping the article was untrue. Sure enough, I have been miserable ever since the day of the shot. I have been achy all over, the fatigue is back and I feel terrible. Has anyone else had the same reaction to steroid shots for their back or their knees? Have you had to refuse these types of shots for pain control? I would be very interested for comments on any experience you might have with steroids? At this point, I would highly recommend that you not use steroids at all cost. I will keep you posted as to their continued effect on me.

I hope all of you had a very Merry Christmas and will have a great New Year. Thank you for visiting my blog!

Be well,
Richard

"Under the Eightball"

Hi friends,
I found an article in the New York Times that I think all of you will find interesting. It concerns a new documentary movie. I hadn't heard about it prior to this article. I hope some of you will watch this movie and comment back to us so we can learn about it.

Be well,
Richard
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December 16, 2009
MOVIE REVIEW | 'UNDER THE EIGHTBALL'
On the Nightmare Trail of Lyme Disease
By JEANNETTE CATSOULIS

Defensible anger becomes indefensible incoherence in “Under the Eightball,” a heartfelt documentary that twists an emotional journey into an anti-establishment tirade.

Written and directed by Timothy Grey and Breanne Russell, the film chronicles their 18-month investigation into the diagnosis and treatment of Mr. Grey’s younger sister, Lori Hall-Steele, who died of Lyme disease in Michigan in 2008. As the filmmakers track the history and politics of the disease, test for environmental causes and watch over the patient’s decline, the first half of the film envelops us in a tender, visually compelling cocoon.

Then things fall apart, so fast and so furiously that it’s impossible to know where verifiable science leaves off, and conspiracy theory begins. Propelled by rage and a string of interviews — with doctors, scientists, authors — the film lurches from Project Paperclip (which welcomed German scientists, including bio-warfare specialists, to the United States after World War II) to the Plum Island Animal Disease Center, from contaminated wells to Japanese germ-warfare experiments.

Taking aim against multiple villains — including Dow Chemical and the health and pharmaceutical industries — and appearing to parallel Ms. Steele’s lack of appropriate treatment with the government’s notorious Tuskegee experiments with black men and syphilis, the directors skid off the rails so extravagantly that there is no going back.

Unfolding like two very different films, “Under the Eightball” undergoes a midpoint conversion from fascinating bug hunt to nightmarish lecture. In the end, critical questions may remain unanswered, but Mr. Grey’s grief and frustration are incontestable.

UNDER THE EIGHTBALL

Opens on Wednesday in Manhattan.

Written, directed and edited by Timothy Grey and Breanne Russell; directors of photography, Mr. Grey and D C Hayden; music by Mr. Grey and Gabe Clark; produced by Justin Blake; released by Andalusian Dogs. At the IFC Center, 323 Avenue of the Americas, at Third Street, Greenwich Village. Running time: 2 hours. This film is not rated.
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