I got an early morning phone call... which everyone who knows me KNOWS is NOT cool. I started to "bark" at the caller when they broke in and said..
Infectious disease group says only "bulls-eye rash" good for clinical diagnosis.
I said.. where is it? They said FRONT PAGE!
Tuesday, October 31, 2006
THE STAR DEMOCRAT
Easton, Maryland
Lyme disease groups upset by new guidelines Infectious disease group says only `bulls-eye rash' good for clinical diagnosis
By STEVE NERY Staff Writer October 31, 2006
CENTREVILLE -- While National Lyme disease patient advocates are protesting the Infectious Disease Society of America's new diagnostic and treatment guidelines, a group of Maryland advocates recently resigned from a state Lyme disease subcommittee largely because of the state's support for the new strict guidelines.
The Infectious Disease Society of America's (IDSA) new guidelines were published online earlier this month after being approved in late August. Many Lyme advocates had objected to the IDSA's previous guidelines for being too strict and outdated, and are even less happy with the new set.
While erythema migrans, or the ``bullseye rash'' that appears on some patients, is enough for a clinical diagnosis, according to the new IDSA guidelines, nothing else is. The IDSA recommends blood testing, which has been found unreliable by many studies, while the Centers for Disease Control had been recommending clinical diagnosis.
Lyme disease is caused by the bacteria Borrelia burgdorferi, transmitted through tick bites. Less than half of all infected people recall the tick bite, according to the International Lyme and Associated Diseases Society (ILADS), and more than half never develop the bullseye rash.
ILADS President Dr. Raphael Stricker wrote a letter to Dr. Sherwood Gorbach, editor of ``Clinical Infectious Diseases,'' which also published the IDSA guidelines, demanding a retraction of the article. Stricker wrote that the guidelines were written by a biased, one-sided group and threaten to harm patients and patient care, according to U.S. Newswire.
Pat Smith, president of the Lyme Disease Association (LDA), also issued a ``call to action'' for people affected by the disease. ``Effectively banning clinical discretion and classes of drugs, alternative treatments and even supplements for any manifestation of Lyme'' is reprehensible, Smith wrote in a letter to Lyme groups across the nation.
The LDA started a petition in protest, available on the group's Web site at
The new guidelines ``take the place of a long-standing policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease,'' the petition reads.
In Maryland, four patient advocates resigned from the Department of Health and Mental Hygiene Lyme Disease Advisory Subcommittee in mid-October. Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland, said she was initially hopeful about the role patient advocates might play on the subcommittee, which met three times beginning in October 2005.
``We went in there with big hopes that we could educate and make a difference for people with Lyme, but right from the beginning, it didn't look promising,'' Barnes said.
``We're not quitting because we're mad,'' she added. ``We're quitting because it's a brick wall in front of us.''
Barnes said she and other advocates hoped to get the state to support more ``patient-friendly diagnostics.''
Johns Hopkins University published a study last fall rating conventional Lyme disease testing methods -- especially the common two-tiered blood test -- as ``unreliable,'' one of many studies questioning the accuracy of traditional diagnostic methods. Ironically, Hopkins has been criticized by Lyme groups for failing to adequately address the disease itself.
``Although the laboratory testing for diagnosis of Lyme disease is improving, the degree of sensitivity needed for a high level of assurance at the time of early Lyme disease is still not obtainable, even through combinations of various laboratory tests,'' the Hopkins report concluded. ``Thus, clinical suspicion based upon well-recognized cardinal features of Lyme disease is still the most appropriate approach.''
Barnes said there are better testing methods and treatment guidelines out there. IGeneX, a California testing lab, has developed alternative tests, while ILADS has diagnostic and treatment guidelines online at www.ilads.org.
Nearly 500 people showed up at Chesapeake College earlier this year when ILADS guidelines author Dr. Joseph Burrascano Jr. spoke at a Lyme disease symposium.
``It's like using leeches instead of modern lab equipment to draw blood,'' Barnes said of the IDSA guidelines, adding she believes it will set them back 20 years.
There's no money going to fight the disease, she added.
``A handful of chronically ill people can't do it alone,'' she said.
Barnes said she is hopeful legislators will take steps to fight a growing regional problem. Lyme disease advocates have received support from some local politicians, including U.S. Rep. Wayne T. Gilchrest, R-Md.-1st.
Barnes said different people, including a man from an insurance company, showed up to the three DHMH subcommittee meetings. Other members included DHMH workers and veterinarian staff workers. Two of the four Lyme disease patient advocates were allowed to attend each subcommittee meeting.
Barnes said she continues to get several calls a day from people looking to get treated and people who haven't been cured. She has spoken to people who have been denied treatment based on the new IDSA guidelines, she noted.
According to the IDSA, a doctor can administer a single dose of doxycycline after a tick bite as a preventative measure if the doctor can identify the tick as a certain species, if it is within 72 hours of tick removal and if the rate of Lyme infection among ticks in the area is higher than 20 percent.
Barnes said one pill is not enough for prevention, and questioned how many doctors can accurately identify ticks. She also said she believes the IDSA recommends doxycycline rather than other more effective drugs because it is much less expensive.
The IDSA guidelines also state that a few weeks of antibiotics produces a highly favorable outcome, and urges doctors not to administer alternative treatments, while Lyme support groups favor treatments on a case-by-case basis.
[ 31. October 2006, 10:19 AM: Message edited by: Tincup ]
Posted by Aniek (Member # 5374) on :
Excellent article! Great to know our side is getting heard. Although I'm very disappointed in Maryland.
Posted by lou (Member # 81) on :
Good article. What is the newspaper?
Copies of this article should be sent to the state legislators. They have oversight of this committee and the state health dept.
Posted by Tincup (Member # 5829) on :
Did I mention... this should be published in 8 different newspapers across the state?
If you want to comment... my suggestion would be a VERY, VERY short Letter to the Editor. Let them know what YOU think about the new guidelines and how it will affect YOU personally.
As MD resident, I was very interested in the article and called Health and Mental H. I spoke to few different people.
I would like to try and help where I can....Can you give me the specifics of what happened on the
committee and what the problems are? They were telling me that article was not accurate (which I
do not believe). Why did advocates leave the subcommittee?
What recommendations is the subcommittee planning on making?
What is the problem with those recommendations?
What should the recommendations be?
Sorry for all of the questions.
Just in an uphill battle of trying to learn about all of this.
Thanks.
Posted by bettyg (Member # 6147) on :
WHOOPIE! TINCUP MADE THE NEWS! Great article, I'll come back tonight and try to write a SHORT feedback letter to them.
me SHORT; come on, but for you TC; I'll do my darnest! Bettyg
Posted by JRWagner (Member # 3229) on :
What motivates these morons? Why do they knowingly act in ways that hurt others?
We need to know WHY they say such nonsence!
Thanky Tinny..
Please Private email me...Important...seriously!
Peace, Love and Wellness, JRW
Posted by shazdancer (Member # 1436) on :
Awesome work, TC. Hope the news guys follow up as things progress. And I hope they press for some quotes from DHMH! Let's hear them tell the public right before election day that they agree that insurance companies should go by the IDSA guidelines.
I'll bet their bosses who want to get reelected will not be happy....
Great job, Shaz
Posted by Melanie Reber (Member # 3707) on :
As for the MD press...it is about time!
As for TC...gotta LOVE her!
Congrats to you both on a job well done!
M
Posted by Tincup (Member # 5829) on :
JR.. I lost all email addresses the other day... so please email me.
I only wish I had time to address all your wonderful questions right now. Unfortunately I am still.. at 5 PM.. in my p.j.'s and unable to think after a LONG day of writing more stuff and deadlines.
If and when I can.. will be happy to share more info.
OK?
Thanks to all who responded to the article! It WILL help! Keep up the good work.
Posted by Lymetoo (Member # 743) on :
Great job, Tinny!! Onward, forward!
Posted by 5dana8 (Member # 7935) on :
Fantastic
Way to go Posted by bettyg (Member # 6147) on :
TC, here's my SHORT version, 192 words!
Thank you Steve Nery for your accurate article about LYME DISEASE and what has been happening lately!
"According to the IDSA, a doctor can administer a single dose of doxycycline after a tick bite as a preventative measure if the doctor can identify the tick as a certain species, if it is within 72 hours of tick removal and if the rate of Lyme infection among ticks in the area is higher than 20 percent".
I've had chronic lyme for 36 years; 34 years MISDIAGNOSED, and 2 years in long-term antiobiotic treatment.
A SINGLE dose would do NOTHING for me! I'd just be closer to my death bed.
I got really sick Feb. 1970; they called it mononucleosis; now EPSTEIN BARR VIRUS.
It was lyme disease! How could a tick have bitten me in late Jan./early Feb? It had to have come into our home by a LIVE Christmas tree, which are loaded with ticks!
Please use care this holiday season with your live trees! Spread those white sheets out to catch and get rid of ALL TICKS from the tree so you don't end up like me ok! CHECK FOR TICKS! Bettyg Posted by imanurse (Member # 7022) on :
quote:Originally posted by Tincup: Barnes said she is hopeful legislators will take steps to fight a growing regional problem.
Growing national problem, would probably be more accurate.
Great job Tincup and kudos to the newspaper for running the story.
Posted by nan (Member # 63) on :
Bless your heart, TC! We are so lucky to have you in our court! Good job, Girl!!
Posted by Tincup (Member # 5829) on :
You all make me giggle.
THANKS!
GREAT letter Betty G.. and very appropriate due to the upcoming holiday season!
Thanks for taking time to write!
Posted by Lymied (Member # 6704) on :
Woo Hoo!!!
Good job TC!!!
I especially like the leech analogy!
Making me proud that you are in my home state fighting the good fight!!!!
Say hi to the shore for me.
Posted by bettyg (Member # 6147) on :
Tincup, you are MOST welcome! Hope they publish it especially about LIVE XMAS TREES! That's what got me! Bettyg Posted by keh (Member # 9089) on :
Tin Cup,
Sure. Let me know more when u can. great job - seems like u have been working really really hard.
Posted by Tincup (Member # 5829) on :
Keh said.. "Can you give me the specifics of what happened on the committee and what the problems are? They were telling me that article was not accurate (which I do not believe)."
I think I'd say the same thing if someone turned up the heat on me. Actually ... chances are those who spoke to you weren't at the meeting.. so they don't know what went on.
Keh said.. "Why did advocates leave the subcommittee?"
In protest of many things after a year of volunteer service.. and because we were up against a brick wall that wouldn't listen, much less bend or even compromise.
We were mostly protesting their total undying support of the IDSA guidleines and crummy lab tests... their lack of caring about any part of Lyme disease and humans who are suffering.. and the fact human diagnosis and treatment policies are overseen by animal specialists (vet staff) rahter than experienced medical doctors who actually recognise and treat Lyme patients.
"What recommendations is the subcommittee planning on making?"
To follow the IDSA guidelines... and using the bad tests... and basically sticking with the status quo.
Keh said.. "What is the problem with those recommendations?"
They suck... and are not good for the residents of the state.
Keh said.. "What should the recommendations be?"
The use of patient/physician friendly guidelines (ILADS).. the discontinued use of ELISA tests in our state (and everywhere).. and the fact insurance companies should cover treatment.
Those are the basics and most vital. then there is a matter of public and physician education.. for which they have sucked at for years. And of course our doctors not being targeted would be necessary too.
Kinda basic human and patients rights... like other folks are suppose to get with other serious medical conditions.
Hope that helps!
Posted by Tincup (Member # 5829) on :
This article was re-printed in another newspaper in Maryland.. the Record Observer... today... November 3, 2006
They called it ...
"Lyme disease patient groups aree protesting new guidelines"
Along with it was a BIG picture of spirochetes coming out of the cyst form.. and in color too!
Also... I wrote up a "side bar" which turned out long enough to be an entire other article! But they printed it all! They called it.. "Categories for diagnosis."
Soooooooooooooooooooooooooooooo..
WAY TO GO Maryland newspapers!!! We appreciate your help!!!
If you can drop a note thanking this paper.. it would be nice.
OR .. call them! A quick thank you is all that is needed!
This paper isn't online... because their sister paper is.
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