[MR] lyme disease hearing, guidelines, and antibiotics use | Lyme Hearing Highlights a Broken System | Rodale News

[David Chessler]

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lyme disease hearing, guidelines, and antibiotics use



Lyme Hearing Highlights a Broken System





Everything we think we know about Lyme needs to be rewritten, one doctor says.

By Leah Zerbe
What you can do


Protect yourself against Lyme disease; seek early 
treatment if you think you're infected.

RODALE NEWS, EMMAUS, PA­ Borrelia burgdorferi is 
a sneak. And a smart one at that. Also known as 
Bb, it’s the organism that’s carried by certain 
ticks and causes Lyme disease, an infection that 
affects an estimated 200,000 people a year in the 
United States. Depending who you talk to, the 
Lyme bacterium causes a short-term infection that 
can be cured with a month’s worth of antibiotics 
or­as a growing number researchers, doctors, and 
patients say­it’s a serious pathogen that invades 
different organs, hides from detection by lab 
tests, and causes chronic pain and symptoms that 
lasts for months or years. Controversy over 
guidelines governing how doctors diagnose and 
treat the disease has been brewing for years, but 
yesterday the arguments were aired in public as 
18 doctors, scientists, and patients testified at 
a hearing before a new Infectious Disease Society 
of America (IDSA) Lyme disease review panel in Washington, DC.

THE DETAILS: The hearing was a result of an 
antitrust settlement brought by the Connecticut 
attorney general to address alleged flaws 
(including financial conflicts of interest) 
regarding IDSA’s 2006 Lyme disease guidelines, 
which are recommended by the U.S. Centers for 
Disease Control. The nine-hour hearing featured 
prominent physicians who stand by the IDSA 
guidelines, those who treat more aggressively and 
prescribe longer and stronger doses of 
antibiotics (as recommended by the International 
Lyme and Associated Diseases Society, ILADS), and 
independent Lyme disease researchers.

Here are some of the highlights from the hearing:

•Current guidelines suggest prescribing an 
immediate single dose of doxycycline if a person 
finds an attached tick on his or her body; 
however, one researcher pointed out, that dose 
won’t effectively block out infection, and it 
could lead to false-negative blood tests for 
Lyme. In other words, the practice could keep 
people who have the infection from being 
diagnosed correctly and given treatment.

•The blood tests of people who are chronically 
ill with Lyme disease could also come back 
negative because of past use of the antibiotic 
azithromycin. This is problematic because current 
guidelines rely on those blood tests to confirm 
Lyme if an infected person doesn’t develop the 
telltale bull’s-eye rash (which, by the way, 
fewer than half of Lyme patients get).

•Some Lyme patients report pain levels similar to 
that of people suffering from congestive heart failure or osteoarthritis.

•There are more than 100 different strains of the 
bacteria that causes Lyme disease, which could 
explain why some people with Lyme actually test 
negative on screening tests, or respond differently to treatment.

•Eugene Shapiro, MD, of IDSA and Yale University 
School of Medicine in Connecticut, reiterated 
IDSA’s viewpoint that people who remain sick 
after being treated with the standard month of 
antibiotics are not suffering from Lyme, but 
MUS­“medically unexplained symptoms.”

•Perhaps one of the most convincing presentations 
came from Allison Delong, MS, biostatistician for 
the Center for Statistical Sciences Program for 
Public Health at Brown University in Rhode 
Island. Delong explained major flaws in two 
studies heavily credited in creating the IDSA 
guidelines, and ones that are often used to 
discredit long-term antibiotic therapy. “She has 
the ability to lay out the math, and call out 
other studies as flawed and overrated,” says 
Daniel Cameron, MD, president of ILADS.

The new IDSA panel will take points from 
Thursday’s hearing into consideration, revisit 
peer-reviewed studies, and complete a report 
regarding guideline revisions by the end of the year.

WHAT IT MEANS:The problem that critics have with 
the current Lyme guidelines is that they are 
extremely restrictive, and consequently the 
testing leaves out many Lyme patients who don’t 
test positive. Doctors and specialists all across 
the country adhere to the guidelines; if they 
don’t, in all but three states (Rhode Island, New 
York, and Connecticut), they risk losing their 
licenses. But as the testimonies were laid out by 
people on different sides of the issue Thursday, 
it became apparent that the current two-tiered 
testing system, relying on ELISA and Western Blot 
blood tests, are not nearly accurate enough. In 
fact, one presenter, Steven Phillips, MD, former 
president of ILADS, says current screening tests 
have a sensitivity between 45 to 55 percent. That 
leaves out a lot of people who are having trouble 
receiving treatment because they don’t test 
positive. And health insurance companies don’t 
have to pay for treatment if a patient doesn’t 
test positive. “Commercial testing for Lyme 
disease is broken. It needs to be fixed. This 
panel needs to at least recognize that and revise 
the guidelines,” says Dr. Phillips.

Lyme disease is complex, but here are some basics to be ware of:

We don’t know it all. One of the memorable 
moments of the long hearing occurred when Ken 
Liegner, MD, a member of ILADS, said quite 
plainly, “A general reassessment of everything 
that is believed to be true about Lyme disease is 
necessary.” He added, “We have to come to terms. 
This is a formidable pathogen, there’s a still a 
lot we don’t understand.” Resolving many of the 
issues will require more scientific research and 
less rancor between camps. As science writer Pam 
Weintraub points out in her award-winning book 
<http://www.amazon.com/gp/product/0312378122?ie=UTF8&tag=marsfarcoukit-20&linkCode=as2&camp=1789&creative=390957&creativeASIN=0312378122>Cure 
Unknown: Inside the Lyme Epidemic, the fight over 
Lyme has become politicized and ugly. “What we 
really need is more research. If independent 
people can make this clear, whether the 
guidelines are changed or not, maybe that’s progress.”

Antibiotics are an important option. One of the 
biggest controversies in Lyme treatment is the 
use of antibiotics, particularly long-term use. 
While this type of treatment can sometimes pose 
serious side effects, studies have also shown it 
helps those suffering from chronic Lyme, 
especially in the fatigue department. If you’re 
diagnosed with Lyme disease and still don’t feel 
better after initial treatment, consider seeking 
a second opinion from a doctor willing to treat 
Lyme more aggressively. As one presenter put it 
on Thursday, long-term antibiotic use may not be 
the answer, but it’s the best thing we’ve got right now.

Prevention is paramount. Of course, the best 
tactic is to avoid the disease. That may become 
harder and harder to do as tick populations 
explode, thanks to warmer winters, large deer 
populations, and fragmented forests. When you’re 
outside in wooded areas, wear a hat and 
light-colored clothing, and tuck your pants into 
your socks. When you get back, do a vigorous tick 
check, paying extra attention to darker, moist 
areas like your groin and armpits, and under your 
bra line. If you find a tick that’s attached, or 
even engorged, remove it by using tweezers to 
pull it off (grasp close to the skin, pull slowly 
and firmly, don’t twist). Toss the tick in some 
alcohol and take it with you to your doctor’s 
office. If you ever find a bull’s-eye-shaped 
rash, you have Lyme. Go to the doctor right away 
for treatment. When the disease is caught early, it’s more treatable.

Get tested twice. If you think, or know, you were 
recently bitten by a tick, and your first ELISA 
test comes back negative, schedule another one 
for a few weeks later. Barbara Johnson, PhD, of 
the CDC, said at the hearing that it is sometimes 
necessary to take a second sample a few weeks 
after the first to get an accurate reading.

Know where to turn. If you are diagnosed with 
Lyme, or suspect you have it (and have ruled 
other health ailments out), join a Lyme support 
group to find doctors and tips on dealing with 
the disease­and how to beat it! Start with 
<http://www.rodale.com/%E2%80%9Chttp://www.lymenet.org/LymeNet.org>LymeNet.org.


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