Wednesday, April 6, 2016

Lyme Warriors Interviewed in response to Scientific Study Click to Listen to Interviews in Full

MLDSE's very own, Paula Jackson Jones, once again advocating on behalf of Maine's Lyme Disease community with Dr Bea Szantyr and Vicky Delfino today on MPBN. Click the link above to listen to their interview or read the transcript of their conversation below.

Study: Long-Term Antibiotics Ineffective at Fighting Chronic Lyme Disease

Apr 4, 2016 


A new study published in the New England Journal of Medicine has found that long-term use of antibiotics is not an effective treatment for people with persistent symptoms of Lyme disease.
Last year, Maine passed a law that protects physicians who use the controversial treatment from facing sanctions.
Some physicians say this new study puts to bed the question of whether long-term antibiotics should be used. But those affected by persistent Lyme symptoms say the study isn’t the last word on the issue.
It was 2007 when Victoria Delfino of Windham was diagnosed with chronic Lyme or, as the Centers for Disease Control calls it, Post-Treatment Lyme Disease Syndrome. Delfino says she had experienced symptoms for years — chronic pain that she attributed to being an athlete when she was younger.
Then, one day, she needed to mail an envelope. It was a simple task that she couldn’t figure out.
“I didn’t know what to do with different denominations of stamps to figure out the postage to put on an envelope,” she says.
After testing confirmed the presence of Lyme, Delfino’s physician prescribed long-term antibiotics. Delfino has been on antibiotics much of the time since 2007, as well as naturopathic supplements. And she says she has improved.
“So I went from being bed-ridden for about a year, to being able to sort of function on some days,” she says. “And some days, I basically still do stay in bed.”
But a recent study published in the New England Journal of Medicine concluded that long-term antibiotic treatment does not improve health for those with persistent Lyme symptoms.
The randomized study was the largest ever done to test the use of long-term antibiotics for Lyme. Two-hundred eighty people in Europe with persistent symptoms were divided into three groups. Two groups each received a different antibiotic therapy for 12 weeks. The third was given a placebo.
“The study shows no benefit beyond what one would expect to find with the placebo effect,” says Dr. Phillip Baker, the executive director of the American Lyme Disease Foundation in Connecticut.
The study found that all three groups did report improvement in their symptoms, but the improvement was about the same in each group, including the placebo group.
Baker says this is the fifth study to find no benefit to long-term antibiotics for persistent Lyme symptoms.
“It’s not a good thing for anybody to be on any medication for a long period of time if you don’t really need it,” he says. “And the need here has not been established.”
“They’re sort of overlooking the fact that everybody improved in a statistically significant way,” says Dr. Beatrice Szantyr, an internist from Lincoln and the medical advisor to Maine Lyme, a nonprofit advocacy group.
Szantyr says the study gives her no definitive answers, and she questions the length of the 12-week antibiotic treatment.
“I’m not sure we know what long enough is, and what constitutes an adequate trial,” she says. “And there there were no combinations of antibiotics used. It was very — it was without nuance.”
Szantyr isn’t suggesting that those with persistent Lyme symptoms should automatically be given years of antibiotics. She says physicians should evaluate each patient individually.
That’s a view shared by Paula Jackson Jones, the co-founder of the Midcoast Lyme Disease Support and Education Group.  (501c3 non-profit)
“The answer is not always that long-term antibiotics is the answer,” she says. “The answer is that the doctor has to be open to whatever works.”
Jackson herself battled chronic Lyme disease. She says for two years, doctors suspected a range of ailments from chronic fatigue to ALS.
In 2011, she went to a doctor who diagnosed her with neurological Lyme. For the next 3 1/2 years, Jackson took natural supplements and received long-term antibiotic treatment off and on. She says she’s been in remission since 2014.
Baker says improvement after long-term antibiotics may be more a function of time.
“Well, you don’t know if they would have gotten better anyway,” he says.
Baker says effective treatment for persistent Lyme requires more research. Until then, he suggests using a multidisciplinary approach recommended by the Institute of Medicine to treat chronic pain.
Delfino says she wants to see those on opposing sides of the long-term antibiotic issue to work together, so the people stuck in the middle — the patients with persistent Lyme — can get the treatment they need.