Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tick expert shares Lyme disease views
By Amy Pearson / [email protected] | Posted: Sunday, February 27, 2011 12:00 am
Tom Grier displays different types of ticks that he claims can carry Lyme disease Saturday at the Winona Public Libray. The tick shown is the Black Legged Tick or deer tick. (David Ranzenberger/Winona Daily News)
Current methods used to diagnose and treat Lyme disease prevent some patients from receiving necessary treatment, said one tick-borne disease researcher.
Tom Grier, from Duluth, Minn., a biology and chemistry graduate from the University of Minnesota, spoke Saturday morning at the Winona Public Library about methods used to test for the disease and treatment guidelines set by the Centers for Disease Control and Prevention and the Infectious Disease Society of America.
"Everything is in place to create a disease that's hard to treat," Grier said.
Lyme patients should be diagnosed and receive treatment based on symptoms, not on blood-work results, Grier said.
"We'd be better off if there had never been a test," he said.
The blood tests used are problematic because they detect antibodies produced by a body's immune system, not the bacteria that causes the disease, Grier said.
Within the first four to six weeks of infection, patients won't test positive for the disease because not enough antibodies are produced, he said.
As the disease progresses, Grier said, bacteria moves out of the bloodstream and into a person's tissues. Antibodies can no longer be detected at that point, rendering the tests useless, he said.
Patients would be better served if physicians focused on Lyme symptoms and did away with blood work, Grier said.
For many Grier's more than 25 audience members, his presentation hit home.
Doctors diagnosed Sharon Kirkpatrick with the disease 20 years ago. Her husband was infected 14 years later. Both have battled the disease since they were diagnosed, she said.
IDSA guidelines now prevent Kirkpatrick and her husband from receiving treatment at Winona Health specifically for Lyme disease. Previously, they said they'd been receiving antibiotics in the past to control the disease.
"I'm just getting sicker," Kirkpatrick said.
Physicians at Winona Health voted in October to not treat patients who may have symptoms similar to Lyme disease, but don't meet the criteria, as if they have the disease.
Winona Health opted to treat patients with the disease only if they meet the guidelines set by the Centers for Disease Control and Prevention and the Infectious Disease Society of America, according to an internal memo obtained by the Daily News.
Many other regional health centers also follow the same guidelines.
The health experts say Lyme disease patients should be treated with antibiotics for about a month and that longer treatments put patients at risk.
In April, the IDSA released results of a four-year review into its own standards for treatment that show extended treatment with antibiotics can cause dangerous health complications, like blood infection, diarrhea and other drug reactions.
But some Lyme disease patients say the affliction has long-lasting effects. They want the health groups to adopt a broader definition of the disease that recognizes antibiotics as an acceptable treatment, even years after an initial diagnosis.
Opponents say the guidelines ignore the complexity of tick-borne illnesses and discount a number of people who suffer ongoing symptoms.
Winona Health issued a one-paragraph e-mail response in December to its adopted guidelines:
posted
Tom Grier is the main reason I am a Lyme patient rather than an MS patient. Many years ago when I was on an Alternative Treatment MS board, Tom posted something that essentially said "All you people who think you have MS should look into the fact that you really might have Lyme."
I got tested positive for Lyme, had a flashback to my years-gone bullseye rash, and realized the fallacies of modern MS treatment over the next couple of years.
I'm still treating Lyme, but there is hope. Thanks, Tom!
Posts: 252 | From NJ USA | Registered: Mar 2004
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Attended a Lyme support group he had going up in Duluth several years ago...smart guy...there was probably ten of us there...wish I could of continued to go but it was just too far for me to travel on a regular basis.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
Camp Other
Unregistered
posted
I agree, he's one of the good guys. We need more like him.
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic