Lyme Disease Research Database Independent reporting on all aspects of Lyme Disease

misdiagnosis

Proposed Lyme legislation ignored by IDSA

In July, a Congressional subcommittee met to discuss a Lyme disease bill that is championed by a number of politicians in the Northeast US. The bill urges congress to approve a national strategy and money for research into prevention, diagnosis, and treatment of Lyme disease. A federal strategy would heighten awareness in all public health agencies.

The hope is that when people who are sick and infected with Lyme go to their local clinic, they may actually be able to receive medical help from doctors who understand the critical importance of early treatment. As it stands, clinics across the US are staffed by medical professionals who remain largely ignorant of it.
Lyme misdiagnoses are rampant and dangerous.

The powerful doctors’ group, the Infectious Diseases Society of America, was absent during the meeting and has remained silent about the bill. You may remember that in 2009 the IDSA opposed a similar bill, claiming that it lacked support from the scientific community.

Senator Richard Blumenthal, who, cosponsored the bill, states that Lyme disease has increased to epidemic proportions. It is the sixth most common reportable disease in the US. In the Northeast, it is second only to
chlamydia. These stats are according to Dr. Ben Beard, director of vector-borne diseases at the federal Centers for Disease Control and Prevention.

From the article “
Lawmakers call for national Lyme disease strategy,” in the Wall Street Journal, July 12, 2012: "'The tick problem is growing. The Lyme disease problem is growing," said Sen. Jack Reed, D-R.I., a cosponsor of the bill in the U.S. Senate. "This requires resources."

The legislation provides for the establishment of an advisory committee made up of researchers, patient advocates and agencies, as well as the coordination of support for developing better diagnostic
tests, surveillance, research and other efforts.'”

Will this be the year that legislators do the right thing and go on the attack against Lyme disease? I continue to hope that influential IDSA doctors – who see their own patients ravaged by the disease – will soon take a stand for more awareness of this increasing epidemic.

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Debbie's success story in dealing with lyme.

Debbie Bassett reminds me of a friend I had in college, also named Debbie, who faced life’s twists and turns with a resiliency and sense of humor that welled up from some eternal energy source.
“At one point, all I could eat was baby food,” laughs Debbie. “I lost 25 pounds.” Neither of these statements are the least bit funny, but somehow throughout our entire conversation I found myself laughing right along with her. Gallows humor: a big relief when you’re dealing with something as serious as Lyme disease.

But it wasn’t this 40-something, mother of two’s ability to find the humor in the situation, so much as her strong intuition and intense need to know, that guided her to ultimately find the Holtorf Medical Center, in Torrance, CA, where she began treatment for Lyme.

The basic trajectory of her story line is familiar to many Lyme patients. Sickness, misdiagnosis, searching, then finding a doctor or medical professional who finally leads to a correct diagnosis and treatment. But treatment is often less of an ending point, and more of a start. I know it’s a terrible thing to say, but sometimes I have envied that people can get a clear diagnosis of cancer, and begin treatment for it, while Lyme patients may suffer for months and years without any definitive diagnosis. On the contrary, Lyme patients are often told they have to get a handle on their stress, take a chill pill, or seek a psychologist’s help for mental trouble.

In Debbie’s case, after landing in the ER twice due to headaches, being told by neurologists that nothing wrong could be found, she was handed subscriptions for Prozac. But she knew something was wrong. She told the doctors she suspected she had an underlying virus that they weren’t locating. It seemed unbelievable to her that “nobody’s taking the time to analyze the situation.”

Frustrated, sick, Debbie wound up in Scripps Hospital in San Diego, where she spent 3 days as doctors examined her, determining what they thought was the problem. They scheduled her for gall bladder surgery. It was then that she experienced an interesting turning point. I won’t tell you the whole story -- listen to her tell it.

Debbie’s warmth, generosity and sweetness is a balm capable of soothing the bruised souls of anybody who has suffered through Lyme. She says it is important to share her story so that other people know they are not alone, and that it is possible to pull through in one piece again, as she is doing. Currently on five different antibiotics, Debbie’s in full throttle on her healing path. Please feel free to contact her, as she wants to give her support to others who are going down the same road, dealing with Lyme. Her email address is:
dbassett@earthlink.net

“It’s not an overnight journey,” she says. But with smart medical attention, patience and a sense of humor, we can heal.

Please join to listen to the interview.


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Be wary of misinformation

Aside from ticks and tick-carrying deer in our front yards there is something else we must be vigilant about: Misinformation.

For example, one piece of advice I've read in a number of places says that you won't get Lyme disease if you pull a tick out of your skin before it's been there for 24 hours. These articles usually do not name their source of information, instead saying, "latest medical research indicates that..."

I wouldn't be so sure. I asked Eva Sapi, Ph.D., who directs the graduate studies in Lyme disease research at the University of New Haven, about this claim. She said there was no evidence to support the "24 hour" rule. She added that personally, she knew field researchers who had contracted Lyme from a tick that had only been embedded for a couple of hours.
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CJ's Lyme success story

"You've gotta hear this!"

That was the subject line in CJ's note to me the other day. Turns out she was right -- I did. I just hung up this minute from our conversation, and I'm still smiling. She's one of those sunshiny souls that just can't help but affect people that way. What does she do for a living? She's the office manager of a trapeze school. Not your normal occupation, but then CJ isn't your average person. Actually, she participates in ironman competitions. Does she still have Lyme? Yes. Does she let it bring her down? If she does, she's not letting it show.

CJ's success story, like everyone who has struggled to defeat the disability that can accompany Lyme disease, comes at a price. She was misunderstood and misdiagnosed for a long time. As a teenager, she attended music camp where she concentrated on her highly developed skills as a flautist. Gifted on both the flute and piccolo, and disciplined about practice, she was headed for a life of professional music.

However, a tick bite that she got at camp stopped her in her tracks. She called home, begging her puzzled mother to let her leave early. Her mom knew something was seriously wrong.

CJ's story takes many jogs and unexpected turns. She falls in love, marries, then deals head on with an unsupportive spouse (a bastard and a s^%#head, to quote her precisely). And the most remarkable thing happens. She finds inspiration in a nine-year-old leukemia patient facing two years of chemotherapy. She is a nurse. At his bedside, she tells him that she's going to run in a charity race on his behalf. He looks at her, asks "can you run?"

LDRD Members can login (to the left) and listen to CJ's story.

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Lyme Disease Mistaken for MS



Getting a correct diagnosis for Lyme disease is a significant step toward getting treatment, yet countless patients are misdiagnosed from the start. Here is a recent account of a North Carolina man who self-diagnosed, after having been put on medication for multiple sclerosis. The article below is from the Raleigh Newsobserver.com, February 19, 2008.

Patients push boundaries of Lyme disease debate.
Two factions hold opposing views on prevalence of tick-borne disease.

Jean P. Fisher, Staff Writer

Even as mounting evidence suggests the state may harbor more tick-borne illness than records indicate, patients with symptoms that match Lyme disease say doctors continue to turn deaf ears to their complaints. They say people are needlessly going untreated or misdiagnosed, leading to advanced illness and even disability. Read more about lyme disease diagnosis.

Dave Tierney of Cary thinks that's what happened to him. Plagued with unexplained fatigue, muscle aches, eye pain and other problems for years, Tierney was diagnosed with multiple sclerosis last year. In June, he left his job as a pilot with Delta Air Lines and began getting long-term disability benefits.

But after researching his symptoms on the Internet, Tierney became convinced he had chronic Lyme disease. An infectious disease doctor and a specialized laboratory test confirmed it. After three months of intravenous antibiotics, Tierney finds his Lyme symptoms much improved and he is back at the controls of an airplane.

"I could have been on MS medicine for the rest of my life," said Tierney, who returned to work this month.

read the entire article here
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Common mistakes in diagnosing and treatment

Deliberations and contestments continue over successful treatment of Lyme disease. Due to the difficulty of getting a correct diagnosis shortly following the initial infection, Lyme patients commonly do not seek treatment until the symptoms become painful. Not everyone gets the bullseye rash! At the present, most physicians do not know how best to diagnose Lyme. If you or a loved one are suffering from symptoms you suspect may be associated with the disease, it is very important to seek a Lyme disease expert. Incorrect diagnosis, and subsequently, inappropriate subscription medication, can lead to serious complications for the person with an underlying infection due to undetected Borrelia bacteria.
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