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#1804 - 06/16/07 02:08 PM
There's No Neutral Ground in War Of Information About Lyme Disease
There's No Neutral Ground in War Of Information About Lyme Disease
By Jason Feifer
Special to The Washington Post
Tuesday, May 15, 2007; HE01
Maryland Del. Karen S. Montgomery (D-Montgomery) knows Lyme disease can be a
nasty foe: Both she and her husband have been through bouts of it. But when
she introduced a bill in the legislature to distribute long-established
treatment guidelines on the tick-borne infection to doctors statewide, she
ran up against another adversary: Lyme advocacy groups.
Opponents dropped by her office in Annapolis to demand interviews. E-mails
and faxes flooded in, expressing dissatisfaction with what the writers saw
as shortcomings in the guidelines. The president of the Lyme Disease
Association -- a group with 24 affiliates in 15 states -- testified against
the bill, saying it would stymie treatment for what the group says is a
chronic, painful and largely unrecognized form of the infection.
Montgomery's measure was approved by the House of Delegates, but it died in
the Senate last month.
As the incidence of Lyme disease has grown nationwide -- roughly 23,300
cases were recorded by the Centers for Disease Control and Prevention in
2005, up from about 17,000 in 2001 -- so has the political clout of Lyme
activist groups, building on some people's frustration with standard
treatments and the belief that many diffuse ailments, from arthritis and
headaches to irritability and poor concentration, are actually symptoms of
lingering, active Lyme disease. The activists have attacked legislation on
state and federal levels, protested outside doctors' offices and lined up
powerful allies, including Connecticut's attorney general. Last month they
opened the Lyme Disease Research Center at Columbia University, made
possible by $3 million the groups raised.
Fighting treatment guidelines of the type Montgomery favored has become one
of the activists' primary goals. Those guidelines, crafted by the Infectious
Diseases Society of America, a leading group of disease specialists,
recommend against some treatments, such as long-term courses of antibiotics;
the activists say such advice stops doctors from recognizing and treating
The IDSA and other medical experts say there's no evidence that this chronic
condition exists. Undeterred, the groups have produced their own
guidelines -- including treatments that have not passed standard scientific
tests or peer review -- and held conferences and published books about the
disease. Leading health authorities including the CDC say some of the groups
are promoting misleading and potentially dangerous information --
encouraging some doctors to misdiagnose patients and treat them with bogus
"We do indeed get calls from patients who are confused -- they hear one
thing and then they read something else, and they don't quite know what to
make of it," said Paul Mead, a medical epidemiologist at the CDC.
Researchers such as Gary Wormser, a Johns Hopkins-trained infectious
diseases expert and lead author of the IDSA guidelines, say the activists
have created an atmosphere of intimidation that inhibits research. "I don't
think there has ever been another disease for which I have been attacked on
the Internet like this. . . .They're not just content to just have two
schools of thought, either. They kind of want to wipe out mainstream
thinking and only have this school of thought."
Pat Smith, president of the Lyme Disease Association, said that such charges
are unfounded and that it's mainstream experts who are keeping useful
disease information from people who need it.
"We are patients, we are families of patients, and quite frankly we are
tired of a small group of individuals dictating that patients should not be
getting treatment for a disease that they have," she said. After feeling
harassed for years, she added, patients were standing up for their rights
and challenging disease experts, who are "getting a dose of their own
Lyme disease, first recognized by researchers in Old Lyme, Conn., in 1975,
is a common infection readily treatable with a two- to four-week course of
antibiotics, according to medical authorities, including the CDC. In 1998
the Food and Drug Administration approved a Lyme vaccine; the manufacturer
withdrew it from the market in 2002, citing low sales.
Caused by the bacteria Borrelia burgdorferi, Lyme is typically transmitted
through the bite of a deer tick. A bull's-eye rash often develops around the
area of the bite, and a patient may develop flulike symptoms such as aching
and fatigue. "A few patients, particularly those diagnosed with later stages
of disease, may have persistent or recurrent symptoms," says the CDC, and a
second four-week course of antibiotics may be helful. If left untreated, the
disease can spread to joints, the heart and the nervous system, according to
Symptoms that persist long after treatment do not mean the disease is still
active, say infectious disease experts. But they concede that some questions
remain. "Here is where it gets confusing," wrote Wormser in an e-mail,
"because about 10-20 percent of people without Lyme will have the same types
of symptoms at any point in time. So the question arises: Are the symptoms
that are present . . . post-Lyme related to having had Lyme, due to some
other identifiable cause or the same as the symptoms (of unknown cause)
found in the healthy population?. . . The good scientific studies cannot
find evidence of residual Borrelia in such patients."
Some advocacy groups disagree, claiming the disease can often become a
treatment-resistant chronic infection marked by painful muscle spasms,
memory loss and chronic fatigue. Their ranks include some people who have
never tested positive for the infection on recognized tests and can't
account for their exposure . Some of those convinced they have chronic Lyme
search out physicians that activist groups call "Lyme literate." Some of
these doctors prescribe up to a year or more of antibiotics, claiming the
standard short-term dose isn't always sufficient to kill the Lyme bacteria.
Studies have shown that long-term antibiotic treatment is not effective, can
lead to antibiotic resistance and can harm or even kill, according to CDC
epidemiologist Paul Mead.
State medical boards have launched investigations of many so-called
Lyme-literate doctors and have taken disciplinary action against some. In
April 2006, for example, the North Carolina Medical Board charged a doctor
with inappropriately diagnosing and treating 10 patients for Lyme disease.
According to Quackwatch, an organization that tracks unscientific medical
claims, there was no evidence for his Lyme diagnosis in any of the cases and
no basis for his prescribing several months' treatment with intravenous
antibiotics. He was allowed to continue practicing medicine, subject to
Paul Beals, a family practitioner in the District, treats patients he has
diagnosed with chronic Lyme with up to a year of antibiotics, monitoring
them, he said, to make sure the medicine is not causing harm. He also
instructs patients to boost their immune systems by making dietary and
lifestyle changes, including more rest, no alcohol, and taking dietary
supplements and fish oils.
"The CDC just doesn't recognize how resilient this bug is to short-term
antibiotics," he said.
Beals has been placed on probation in Maryland and the District for
performing tests and prescribing treatments, unrelated to Lyme disease,
without medical indication.
Rob Marra, a personal trainer in Baltimore, uses alternative therapies
including diet change (lots of vegetables; no coffee, sugar or grains) and
nutritional supplements (including sea salts and magnesium) for what he said
is a case of chronic Lyme that basically immobilized him for more than two
years. He said he doesn't care that most doctors wouldn't approve of this
"The medical community has always resisted things that have tons of
anecdotal evidence, but if they don't have a lab result or the research to
back up what someone is actually saying, they'll say that they're crazy," he
Alternative Lyme therapies promoted on the Internet and elsewhere include:
Hyperbaric oxygen chamber. The chamber, more commonly used to promote the
healing of infected wounds, delivers oxygen in high doses. Supporters offer
multiple reasons for its use, most notably that increased oxygen levels in
the bloodstream will harm the Lyme bacteria and that oxygen helps stimulate
the immune system. Wormser said there's little evidence that this treatment
does anything to fight Lyme disease, but he said it isn't considered
Rife machine. Proponents say the electromagnetic device, at one time
marketed as a cancer cure, aims energy waves whose specific frequencies
shatter the Lyme bacteria, in much the same way that a singer's voice can
shatter glass. Attorneys general in Wisconsin and Minnesota have taken
action against selllers of Rife machines, claiming they offer false
promises. Quackwatch says the device has "no value for diagnosing or
Dietary changes. Some patients take large doses of salt along with vitamin
C, believing this will dehydrate or hurt the Lyme bacteria. "It's one of
those therapies that doesn't have biologic rationale. There's no reason that
it should work," said John Bartlett, an infectious disease specialist at the
Johns Hopkins University School of Medicine. Other patients eat an alkaline
diet because they believe the food can raise the body's pH and make it
inhospitable to the Lyme bacteria. Wormser said that it's extremely
difficult to alter the body's pH and that any serious change could result in
Pulse dosing. Instead of taking a course of antibiotics, some patients
take long breaks between bouts of medication in the belief that it will make
the drugs more effective. Wormser said that has not been proved and that
pulse-dosing studies done for HIV showed that it hurt patients.
The Lyme patient advocacy movement gained momentum in 2006, when the
Infectious Diseases Society of America updated its guidelines for
identifying and treating Lyme disease. The society included a list of
alternative therapies not recommended for treatment of Lyme -- including
pulse dosing, use of the hyperbaric oxygen chamber and nutritional
management -- and that became a rallying point for the groups.
They got a boost from Connecticut Attorney General Richard Blumenthal, who
launched an investigation into the IDSA to see whether it had unlawfully
ignored some information about the disease. That investigation is ongoing,
according to Blumenthal's office.
Wormser, author of the IDSA guidelines, said that throughout medical
history, groups of people have blamed diverse and medically unexplained
symptoms on a wide variety of ailments. Instead of chronic Lyme, he said, it
was once chronic Epstein-Barr, and another time it was chronic candida. The
difference now, he said, is that the Lyme groups are so loud.
Jason Feifer last wrote for Health about proposals to give tax breaks to
organ donors. Comments:firstname.lastname@example.org.
I could go on for pages arguing the points in Mr. Feifer's article, but
frankly, I don't have a lot of time and energy, having chronic Lyme myself.
I'll just add a few points to the discussion.
First, a little personal history. When I finally got the diagnosis of Lyme,
it was years too late to prevent chronic disease. First I was diagnosed with
Fibromyalgia, then Irritable Bowel Syndrome was tacked on, then Neuropathy,
then Chronic Fatigue Syndrome (fatigue can be chronic, but according to
IDSA, not Lyme!), then Restless Leg Syndrome, then Arthritis, then
Tinnitus... you get the picture. Finally, a minor accident caused
overwhelming symptoms and inability to function. I finally got a referral to
a Lyme Literate doctor, and I'm getting much better with treatment.
To learn more about Lyme and how to help myself get healthy, I joined a
support group in the DC area. When I learned how many people in Maryland,
DC, and Virginia have Lyme -- way more than the CDC estimates -- and that
the numbers are not just growing but escalating, I kept wondering WHERE IS
THE OUTRAGE? Where are the people protesting and demanding more research for
a cure? I look around at Lyme patients, and I see only two other things we
have in common: We live in suburban locations exposed to deer and other
wildlife, and we used to enjoy doing outdoor activities like hiking and
gardening. We don't make much of an identifiable group, except we're all
So, when I saw the article "Combat Zone" which seemed to say that the Lyme
advocacy groups are now vocal and uppity, I said "Hooray! It's about time!"
Lyme patients need advocates just as much as AIDS patients did in the early
1980s. In this country, nothing happens without organizing and activism.
I would also like to say that people don't join advocacy groups, pay
memberships, make donations, and chase politicians because they have nothing
better to do with their time and money. They do so because they feel they
HAVE TO. I was one of those people emailing Karen Montgomery and many other
people in the Maryland Statehouse. I would much rather have been spending my
weekend doing other things, just like I could be enjoying my Sunday evening
Another point, if you want to see an explanation of why Lyme Wars or the
"Combat Zone" exists, take a look at the Washington Post article "Where Did
the Doctors Go?" published Sunday, May 20, 2007, page B2, written by
Washington Post staff writer Jonathan Weisman, about his daughter's
afflicton with a very complex and difficult to treat disease. Check out
paragraph six... "The troubled story... finds it's roots in an American
medical system that spins cookie-cutter procedures into gold while
penalizing the specialists who deal with patients like my daughter---tough
cases that take time, thought trial and error, lots of medicine but not much
hardware. Under our system, the cardiac "cath jockey" who can slide dozens
of catheters into arteries in a week or the opthalmologist who flies through
production-line cataract surgeries will always be living considerably larger
than the physician puzzling over the debilitating aches in Allisa's legs."
The same situation applies to Lyme! It's NOT a simple infection, easily
cured. No two patients look the same, or respond the same to treatments. No
sure-fire prevention or cure exists. Doctors like those in IDSA send you
away after a month of treatment and tell you that you are cured -- because
they said so.
Finally, Mr. Feifer, please don't point the finger at Lyme patients for
trying alternative or unorthodox treatments. We KNOW we are the laboratory
animals for this disease. We're not nuts. We just want to get well, or in
some cases, just survive and have a decent life again.
5/20/2007 7:59:33 PM
May 19, 2007
P. J. Gabriele
56 Evelyn Street
Stratford, CT 06615
RE: IDSA Guidelines: Tick Transmitted Rodent/Deer Infection Epidemic
On behalf of friends & family I extend my greatest appreciation toward
leaders of the IDSA; Grandmother, mangled bones, sentenced to a
twenty-three-year term, rotting in her chair, unable to cradle her
grandchild once the newborn approached 13lbs. Her son, thirty-eight,
magnificent auburn hair falling out in clumps, twisted backbone, drenching
sweets, until misery ceased after a fatal heart attack, comatose weeks
prior, face swelled beyond recognition; my other uncle stabbed himself in
the throat after a psychosis initiated by the disease while Grandfather was
stabbed by his son who mistook him for a demon; my husband, disabled after
seven years & twenty surgeries, the disease caused endless nerve damage &
crippling arthritis; my child, emaciated, heart pains, hallucinations,
wretched stomach cramps & her body slashed by spreading rashes; friends
fortunately developed the bull's eye but it was unrecognized by physicians,
conveniently blind to the cluster of common symptoms, thereafter they were
plagued by illnesses; bound to my prison bed, the incapacitating
ever-lasting fatigue, irreversible brain-damage, soft pillows, sheets &
gentle water unbearable once neuropathy monopolized, a compromised immune
system caused by the infection, years of countless doctors visits, majority
unwilling to diagnose, long-term treatment enabling a hopeful recovery in
the distant future; the Countries' Children, homebound, learning disabled,
unrelenting seizures, energy of the aged, disenchanted, life's delights
intangible, friendships soured, excluded, isolated, passion pining, crying
out, stricken with cruel ailments, tremendous pain, suffering & occasional
death. I relish the day when Americans witness the blood-stained currents
your egos reigned over our Nation!
P. J. Gabriele
5/19/2007 10:09:35 PM
In this world, there are sins of commission and sins of omission. The
latter involves what is not said and done, versus what is.
While Mr. Feifer was long on quotes and praise for the Infectious
Disease Society of America, he was short on details when it came to the
credible institutions that have allied themselves with the "persistent Lyme
theory" and the patients' advocacy groups.
Although Mr. Feifer breezed over the issue, Attorney-General Richard
Blumenthal of Connecticut is investigating the IDSA for such serious charges
as anti-trust violations, monopolization, and exclusionary conduct. They
quote only 405 of the 18,537 available studies in their new Lyme treatment
guidelines, while simultaneously pursuing patents and remuneration from
products that depend upon the idea that Lyme is simple to "cure". Worse yet,
many of these IDSA "experts" receive compensation from insurance companies
that have a vested interest in limiting treatment - as the IDSA guidelines
In ignoring 98% of the published literature on Lyme and tick-borne
infections and in rejecting input from treating doctors and other
researchers in the field, the IDSA has raised an aura of exclusionary
conduct. They simply don't want to be confused by the facts that interfere
with their bottom-line. In disparaging anyone who dissents and especially in
last month's attempt to make the IDSA guidelines the official policy of the
Maryland health department (the Montgomery bill referenced by Mr. Feifer),
the IDSA raises the specter of monopolization. The Blumenthal inquiry is
well-deserved but not well-explained by Mr. Feifer.
In a March 21, 2007 interview with the Hartford [CT] Courant, AG
Blumenthal said that his investigation of the IDSA has revealed "conflicts
of interest that are credible and powerful". Small wonder given their
Also, Mr. Feifer does not dwell long on the fact that Columbia
University has opened a center to study persistent Lyme infection. Is the
acceptance of the persistent Lyme theory by one of America's best known
medical schools irrelevant, too? Why would Columbia University hazard its
own great reputation if there were no merit to the idea that Lyme can
The Washington Post accepts the IDSA's criticisms of hyperbaric oxygen
therapy as though there exist no medical professionals capable of defending
it. Apparently, Mr. Feifer did not look into the work of Dr. William Fife at
Texas A & M, who tried hyperbaric therapy based on research that Lyme
spirochetes will die when exposed to an oxygen saturation between 4% and
22%. He improved many Lyme patients' lives with hyperbaric therapy, leading
to its popularity today.
In terms of pulsed antibiotic therapy, at least one medical study
recommends pulsing the antibiotic cefotaxime to treat cancerous skin lesions
associated with Lyme infection. Kutting B, et. al. J Am Acad Dermatol. 1997
Feb;36(2 Pt 2):311-4. Besides that, pulsing is premised on the long
life-cycle and sequestering techniques of the Lyme bacterium, which lead to
a game of bacterial "hide-and-seek". Why does Dr. Wormser invoke AIDS as a
counter-example? That's not only a markedly different infection, but a
Finally, it's too bad that the Washington Post did not clarify that
the Lyme disease vaccine was withdrawn amidst a firestorm of lawsuits
concerning its safety - not just"poor sales". Within the first two years on
the market, the vaccine caused 640 emergency room visits, 34
life-threatening reactions, 77 hospitalizations, 198 disabilities and six
deaths. Hundreds of lawsuits resulted, and two of "IDSA's finest" were named
in the largest suit, accused of negligently handling the reports of adverse
reactions during the vaccine clinical trials. Had those adverse reactions
been properly reported and investigated, the vaccine might not have been
thrust on the unsuspecting public to cause MORE adverse (and deadly)
So you see, Washington Post, there were a few missing facts in your
report, which makes it unduly biased for the Infectious Disease Society of
America and against Lyme patients - as well as the attorney-general of
Connecticut and Columbia University!
But there always will be "missing facts" when you rely on the IDSA to
educate you about Lyme disease. The individual members of the IDSA Lyme
"expert" group have vested financial interests in keeping the status quo,
and so their guidelines reaffirm the status quo despite overwhelming
scientific evidence that they've got it WRONG!!!
And a lot of people are suffering needlessly in the process.
We would simply appreciate that journalists dig deeply enough to help
advance the cause of truth, which will help set millions of us free from
needless suffering, disability, and premature death.
5/17/2007 1:04:00 AM
Another take-away message from Mr. Feifer's article "Combat Zone" is
that Lyme patients do not have the right to influence the process by which
our disease is researched and combated. We are too "loud" for the tastes of
Dr. Wormser, the IDSA, even Mr. Feifer and the Washington Post.
It's strange to see that other patient advocacy groups for conditions
like AIDS and cancer don't have to suffer the disdain of the elitists in
control of academia and the media!
If it weren't for patient advocates like me, a number of my personal
acquaintances would no idea how dangerous Lyme disease is or even what to do
when first confronted by a tick bite or bull's-eye rash - as several of them
have faced since starting to listen to my own Lyme tale of woe!
When people lose their eyesight, health, mobility, energy,
independence, jobs, careers, relationships, dreams, and peace of mind simply
because they followed the health experts' advice to "go enjoy the great
outdoors" (where the infected ticks live), they tend to speak loudly in
order to warn others. When our misery is compounded by a lack of
knowledgeable and sympathetic doctors, by a blind over-reliance on blood
tests that miss up to 40% of culture-proven infections, and by treatment
delayed, interrupted, and shortened by cost-saving insurance companies, we
get louder on our own behalf!
And to add insult to injury, state governments across America are
engaged in a campaign to force ALL physicians to conform to the IDSA view of
Lyme by threatening the medical licenses of doctors who currently disagree
with the IDSA's "happily ever after" view of Lyme. Instead, these doctors
believe the many aforementioned medical studies (by IDSA members and others)
documenting both the persistence and severity of Lyme infections. Such
doctors have organized themselves into a different medical society, the
International Lyme and Associated Diseases Society (ILADS), which holds
CME-accredited conferences. The ILADS guidelines are published in the
National Guidelines Clearinghouse right beside those of the IDSA. Courts
which have considered the matter have found that two separate standards of
care exist for Lyme, that of the IDSA and that of ILADS, and thus patients
should be allowed to choose either under the legal principle of medical
However, none of this has deterred the state governments from de facto
endorsing the IDSA standpoint and persecuting the doctors who break from it
in the slightest manner. An enterprising journalist should be asking why!
5/16/2007 10:54:35 PM
Dr. Carole Alton
Carole M. C. Alton
PEPPERELL -- Dr. Carole M. C. (Paul) Alton, a resident of Pepperell,
died Sunday, Nov. 19, after a long battle with Lyme disease. She was the
beloved wife of William J. Alton.
She graduated with a bachelor's degree in dental surgery from the
University of Glasgow, Scotland in 1965, and a doctorate of medical
dentistry from Tufts University in 1976. Mrs. Alton was a professor at Tufts
Dental School through 2005. From 1978 to 1991, she had a dental practice on
Main Street in Groton. She was a dedicated sports fan and particularly loved
skating and New England Revolution Soccer. According to family members, Mrs.
Alton was involved in Dog Agility Competitions with her collie, Lola. She
loved a wide range of music from Billy Idol to Rachmaninov. She had a wicked
sense of humor, family members said. Besides her husband, she is survived by
two sons, Paul M. C. Alton and Guy W. B. Alton, both of Mason, N.H.; a
daughter, Pamela C. D. Alton of Nashua; four grandchildren, Ian, Winter,
Renee, Camilla; and three step-grandchildren, Nicky, Rusty, and C.J.
Published in the Lowell Sun on 11/24/2006. Guest Book · Flowers
Martin F. Dumke
Dumke, Martin F. Of Denton. Martin Frank Dumke passed away in his
sleep at his home in Denton, MD on Wednesday, November 15, 2006 from
neurological complications of Lyme disease.
Martin was a strong, kind, and loving man, and is survived by his
friend and life-time partner, Marc Wright. He is also survived by his
mother, Ruth Dumke of Milwaukee, WI; two sisters, Mary Lynn and Kathryn;
four brothers, Jim, Bob, John and Tom; seven nephews, Jason, Aaron, Ben,
Matt, Alex, Darin, and Danny; and three nieces, Amanda, Amber, and Mary
Catherine. He was predeceased by his father, Kenneth Dumke. Martin was an
avid bicyclist and he and Marc enjoyed many memorable days canoeing, hiking,
and birding. Together they enjoyed the company of their many friends and
neighbors and their many visits with family. He was an employee of Verizon
in Baltimore. "Martin, I will love you always." Services were held on Sun.,
Nov. 19, 2006 at Fellows, Helfenbein and Newnam Funeral Home, P.A., Easton,
MD. Interment was private. A memorial service will be held at a later date.
Memorial donations may be made to the National Wildlife Federation, 11100
Wildlife Center Drive, Reston, VA 20190. http://www.fhnfuneralhome.com. Published
in the Milwaukee Journal Sentinel on 11/19/2006. Guest Book · Flowers · Gift
Shop · Charities
5/16/2007 10:42:55 PM
Brett Anthony Paul, 31
He is dearly missed. Wednesday, May 7, 2003
Locks for love
Teen donates hair as tribute to father
By Gigi Wood Iowa City Press-Citizen
Four years and 11 days ago, Brett Paul died from Lyme disease, an
illness carried by ticks.
(Photo caption- Lori Paul wipes tears from her eyes as her daughter
Ashley Paul, 13, gets her hair washed after cutting off a length of hair to
donate to children that lost their hair due to cancer treatments.
Paul, then 31, had attended a wedding on the East Coast when he was
bitten on the head by a tick.
He struggled for three years with the disease until he lost his life
with his children and wife of 10 years by his side.
Days after his death, his daughter, Ashley Paul, then 9, watched a
television show about donating hair to children with cancer.
"She said, 'Mom, I'm going to do that,'" said Lori Paul, Ashley's mom.
"I thought it was just a passing phase, but she stuck with it."
Ashley decided this week that it was time to cut the hair she had been
growing for four years in tribute to her father. So she went to The Wave
Length, 1705 First Ave., in Iowa City.
Onlookers could hear a bobby pin drop when Ashley Paul looked at
herself for the first time when her haircut was complete. Her mother stood
speechless with tears streaming down her cheeks. Her hair, which once
reached down her back, is now shoulder-length.
"It's different. It's not what I expected, but I like it," the
13-year-old Tipton student said.
"Now her hair matches her attitude," Mary Larson, a family friend and
neighbor, said of the trendy hairstyle.
Ashley Paul, 13, watches as stylist Courtney Durow prepares to cut off
her long hair. Ashley donated her hair to "Locks for Love."
Lori Paul said the time was right for the haircut because the family
recently reached the four-year anniversary of her husband's death. It also
is the right time to raise awareness about deer ticks with families headed
outdoors, she said.
"I think he would be very proud of her. I think she will set goals in
the future that she will reach as well," Lori Paul said. "She looks just
like him. He would do anything for anyone and that's her."
Ashley Paul has already considered one goal: She wants to be a doctor
when she grows up. The seventh-grader is an honor roll student, plays the
saxophone and loves horses. She also plays on the basketball, softball,
volleyball and track teams and is a former flag-football player.
For now, though, she is excited to show her friends her new hairstyle.
"I only told one friend I was going to do it," she said. "Most of my
friends have never seen me with short hair."
Ashley Paul kept the hair that was snipped off Tuesday. She plans to
write a letter to include with the hair and send them off to "Locks for
Love." The Florida-based charity uses donated hair to make wigs for children
who cannot afford to pay for one. The program has helped more than 800
children nationwide since it was formed in 1997.
Gazette, The (Cedar Rapids-Iowa City, IA) - April 29, 1999
Brett Anthony Paul
Brett Anthony Paul, 31, died Tuesday, April 27, 1999, in Mercy Iowa
City after complications of Lyme Disease. Services: 10 a.m. Friday, St.
Mary's Catholic Church, Tipton, by Father Eugene Benda. Burial: Rochester
Cemetery, Rochester. Friends may call from 5 to 7 p.m. today at Fry Funeral
Survivors include his wife, Lori; his children, Ashley and Jake Paul,
both at home in West Branch; his parents, Donald and Ann Marie Paul of West
Branch; and four brothers, Donald Paul of Radcliff, Michael Paul of West
Branch, John Paul of Tipton, and Kim Paul of St. Louis, Mo.
Gazette, The (Cedar Rapids-Iowa City, IA) Date: April 29, 1999 Edition:
Final Page: 2 Record Number: 1057746 Copyright (c) 1999, Gazette
5/16/2007 10:34:22 PM
As a follow up to my previous comments...
Perhaps embarrassed by having had his journalistic credentials and
objectivity questioned, Mr. Feifer notes on his blog that he changed some of
the content in his blog article to be less flippant.
I applaud Mr. Feifer for doing so. Perhaps the next step would be to
do a follow-up article in the Washington Post in which he actually talks to
people on the other side of the debate and perhaps does some research.
Unfortunately for Mr. Feifer, his ignorance appears to extend well
beyond Lyme disease and the basics of good investigative journalism, for he
does not seem to realize that you can't cover your tracks on the Internet.
The blog article may have changed, but the original version lives on for
eternity at http://www.flickr.com/photos/8342623@N04/501548675/ , forever
there reminding the world of Mr. Feifer's bias, poor reporting skills, and
generally snarky attitude.
Mr. Feifer, we pray for you that you never get bit by a Lyme-infested
tick, but if you do get bit and decide you want to be actually fight the
illness and symptoms, you'll want to understand the other side of this
5/16/2007 9:34:41 PM
The take-away message from Jason Feifer's article on Lyme
disease ("Combat Zone") is that persistent infection with the Lyme
spirochete does not exist. He relies upon the "experts" at the Infectious
Disease Society of America for this conclusion.
However, these "experts" themselves have been on the forefront
of publishing medical studies documenting the survival of the Lyme bacteria
past multiple rounds of antibiotics. In 1992 and 1993, Mark Klempner
published two studies in the Journal of Infectious Diseases documenting how
Lyme "spirochetes can survive antibiotic treatment through intracellular
sequestion within fibroblasts" making them "among the small number of
bacteria that can cause chronic infection by localizing within host cells
where they remain sequestered from some antimicrobial agents" (1993;
167:1074-1081). Or as he stated in the same journal"The Lyme disease
spirochete . . . can be recovered long after initial infection, even from
antibiotic-treated patients, indicating that it resists eradication by host
defense mechanisms and antibiotics . . . several eukaryotic cell types
provide the Lyme disease spirochete with a protective environment
contributing to its long-term survival" (1992; 166(2):440-4).
Or as Raymond Dattwyler (also an IDSA "expert") put it in
Reviews of Infectious Diseases, 1989 11(6)S6; S1494-8, "Lyme borreliosis is
a chronic infectious disease caused by the spirochete Borrelia burgdorferi."
Or as Drs. Dattwyler and John Halperin (both of IDSA) described
in the New England Journal of Medicine in 1998 (319(22): 1441-6), We studied
17 patients who had presented with acute Lyme disease and received prompt
treatment with oral antibiotics, but in whom chronic Lyme disease
Or as Dr. Halperin wrote in Neurology in 1992 ((42):43-50), "In
many instances continued infection appears to be essential for symptoms to
persist, no matter how small the number of organisms, as antimicrobial
therapy is generally followed by clinical improvement."
The title of a 1990 American Journal of Medicine (88:21-26)
article by the much-quoted Dr. Gary Wormser and Robert Nadelman says it all:
"Isolation of Borrelia burgdorferi from the blood of seven patients with
Lyme disease" four months after treatment!
Or as Gerold Stanek (also of IDSA) put it in the British Journal
of Dermatology in 2001, "The relapses she repeatedly suffered despite
initially successful antibiotic treatment could be related to the
observation that Borrelia may possibly be able to remain dormant in certain
tissue compartments, thus escaping bactericidal antibiotic activity"
Or as Allan Steere, guru of IDSA on Lyme, told the American
Journal of Medicine in 1995 (88:4A-44S-51S), Similarly [as in tertiary
syphilis or tuberculoid leprosy], the antigenic stimulus in Lyme arthritis
would appear to be a small number of live spirochetes, demonstrated here by
monoclonal antibodies, which may persist in the synovial lesion for years
Or as Allan Steere, wrote in the New England Journal of Medicine
(1990 Nov 22; 323(21):1438-44), "The likely reason for relapse is failure to
eradicate the spirochete . . . This last article is one of many studies that
show continuing symptoms are most likely due to persistence of the
Indeed, many articles have been published before AND since 1990
demonstrating the chronicity of Lyme, by members of the IDSA Lyme "team" and
many other reputable scientists.
So, are there any fact-checkers at the Washington Post?
5/16/2007 4:18:00 PM
James B. Cole said: "Doctors certainly do not know
everything, but they know much more than that the average person."
Mr. Cole, I will never forget the "deer in the headlights"
expression of my GP who was so unfamiliar with lyme that she did not even
know it was a spirochete bacteria. She also told me that lyme was rare in
Loudoun County, Virginia and I couldn't possible have it, when the County
website says 50% of VA cases are in Loudoun. Yes, doctors don't know
everything. That is why it is necessary to go to experts who do, LLMD's,
just as you wouldn't go to a cardiologist for a brain tumor.
Our child's pediatrician agreed to test our child only
after I agreed to pay for the test out of pocket. She didn't doubt our child
had lyme; she was afraid of jeopardizing her relationship with insurance
companies. By the way, our child tested very high positive in every
category, indicating active and past infection. Fear and intimidation of
doctors needs to be addressed so they are not afraid to investigate and
treat. The average doctor is afraid and patients suffer the consequences.
5/16/2007 10:36:12 AM
Your article entitled "Combat Zone" ignores the facts. Plain and
simple you attack the basis of one group "The Activists" while nnot looking
at the "Experts" and their basis for motivation and the research that they
quoted while coming up with their guidelines.
When the IDSA so radically changed their guideleines they based
them on less than 500 studies that supported their view.
Blatantly ignoring the other 18,000 published studies and
Makes me wonder who pays the bills of this Author? Is it the
Newspaper...which is supposed to be unbiased, or could there be a darker
side to this?
It seems there just may be!
I have suffered from this disease for years and happen to be one
of those "Radicial" people...along with my two children, that somehow
'magically' respond the treatments that are recognized by "Lyme Literate"
It is my deeply held belief that I would indeed by dead by now
had I NOT gone down this path. (I have evidence to proove just that also.)
I am keeping this short for a reason...any newspaper that would
allow such biased and slanted reporting deserves less than my time.
5/15/2007 1:43:15 PM
Moderator: LymeAngl, Angls4hope
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