Hi folks,
The LDA event at NYU on the evening of May 19th is
special! For only $20 each we can fund research into
chronic Lyme disease, listen to and meet writers who
have Lyme disease, hear Dr. Brian Fallon and Dr. Joe
Burrascano and get to hang out with other Lyme
patients for a while.

Please sign up for this event ASAP. You can buy
tickets on line or mail away for tickets by going to http://www.lymeliterati.org/
Click on the "Get Tickets" button on the lower right
hand side.

The evening will feature Amy Tan, Meg Cabot (author of
"Princess Diaries", E. Jean Carrol (Elle Magazine)
Jordan Fisher Smith author of "Nature Noir" , and
Jennifer Weis, executive editor, St. Martin's Press in
conversation with Brian Fallon M.D. and Joseph
Burrascano MD.

The money goes toward funding the first research
center into chronic Lyme disease at Columbia
University.

The press is invited, and my motto is that wherever
the press goes, we want to go so that the word gets
out how serious this illness is.

Please sign up now. www.lymeliterati.org
Thanks,
Ellen

 

Amy learned quite a lot about her Lyme disease from the lymenet group. She has been wonderful about publicizing our problems.

So let's try to show up in great numbers to see her and Dr. B , Dr. F. Meg Cabot, etc. It will be fun.
Ellen
 

Bettyg, Iowa
 

Let's try to make a good showing here. Amy Tan has really been extending herself to get the word out about Lyme . That's really one of the best things that has happened for us.

Remember how we used to write on this list that we wish we had a "celebrity spokesperson"? Although Amy Tan is not officially a spokesperson, she is doing as much speaking out for us as any official spokesperson would do.

This should be a lot of fun. Please try to come if you are in NYS , or Ct, or NJ or anywhere else close enough to get here for an evening.
Ellen
 

And how about other lyme events? Are some of those recorded?

I love Dr. F....saw him in March for an evaluation. I will suggest that he try and record such events in the future, when I mail him a thank you gift...

Tina

[This message has been edited by timaca (edited 09 May 2005).]
 

I have been going back to the site again and again and then to expedia, but alas, THe $ and time just dont allow. Maybe everyone there should have a pin on for those of us who CANT go or something...or better yet, carry around a cardboard cutout so that the media could see the real numbers. Haha

Have a great time and know we are jealous!
Trails
 

i know some good little restaurants in the neighborhood if anyone needs a recommendation.
 

------------------
oops!
Lymetutu
 

Thanks for the links!

There were many in the audience that had no idea - she shared the grizzly details and I hope that night she brought awareness to some in the audience.

I just need to pace myself. I am still sick but of course get one ounce of wellness and I want to go light the world on fire. It is killing me though because I love to write and this conference in NYC is right up my alley.

I bought a seat...I wished they could put a ribbon around it for me. It is so important that our numbers be represented despite our limited funds and wellness. That is why I was really pushing to go because I feel that the more bodies that show up the more seriously we will be taken.

Please Ellen come back and post all about the evening on the 19th and if you find out they are video taping please let us know.

Thanks!

[This message has been edited by Lymied (edited 13 May 2005).]
 

Also the following newspaper article from the Washington Post is from Cheryl and Rose's Lymeinfo news group:

http://www.washingtonpost.com/wp-dyn/articles/A19083-2003Aug4.html

The Washington Post
Washington, D.C.

Amy Tan, Ticked Off About Lyme
The Novelist, Under Treatment for Late-Stage Lyme Disease, Could
Never Have Conceived How Hard It Would Be to Get a Diagnosis -- or
How Surreal the Symptoms Could Be
By J.J. McCoy
Washington Post Staff Writer
Tuesday, August 5, 2003; Page HE01


It wasn't until she began having hallucinations about a naked man
approaching her bed that novelist Amy Tan got really worried.



She first assumed what she was seeing was her husband, who brings her
coffee in the morning. "But it was the middle of the night," she
recalls, and "he wasn't saying anything or doing anything else. He
was just coming toward me [before stopping] next to the bedstand, as
though he was turning on the light."

She took his silence to mean the worst.

"I thought someone was dead," she recalls. "I reached for him, and
the image started to warp as I realized it wasn't real."

She sprang to in dread and started running through her SoHo loft,
calling out for him -- and very soon finding her flesh-and-blood
husband, Lou DeMattai, calmly watching TV.

"Oh, thank God, you're alive!" she said.

What Tan didn't realize is that her experience about 18 months ago
was perhaps only the strangest manifestation of what has since been
diagnosed as late-stage Lyme disease -- an illness she believes she
had contracted two years earlier but that continued to cause
neurological damage, thanks to several misdiagnoses by doctors
unfamiliar with or even hostile to the possibility.

Even now, after several months of treatment with antibiotics, Tan
says her symptoms range from fatigue and memory loss to tinnitus
(ringing in the ears) and olfactory hallucinations.

"I smelled dead rat briefly, but over a period of hours" and in
different locations. "It's definitely weird."

Other symptoms have included hair loss, memory gaps, dropping first
letters of words when writing by hand and replacing words with
similar-sounding gibberish when speaking. Most recently she's
experienced vertigo and expects that she'll continue to feel some
joint pain "as a souvenir."

Tan's case dramatizes the growing, increasingly acrimonious division
in the medical community over the proper treatment and diagnosis of
Lyme disease, an illness caused by a bacterium, Borrelia burgdorferi,
that enters the body via the bite of a deer tick.

There are essentially two armies in the Lyme war. The larger is the
conventional team, supported by the Centers for Disease Control and
Prevention (CDC), the National Institutes of Health (NIH), the
insurance industry, most organized medical groups and the majority of
physicians. Members of this camp embrace a standardized set of
symptoms, tests and treatment. As described on the CDC Web site
(www.cdc.gov), Lyme disease starts with a tick bite and typically
involves a "bull's-eye" rash -- a round, red mark surrounded by a
paler ring and, often, a larger red ring -- accompanied by symptoms
such as fever, fatigue, headache and aching muscles and joints. Early
on, diagnosis is usually clinical, with a blood test preempted by
symptoms and risk factors for exposure. Standard treatment is oral
antibiotics, usually lasting for 10 days to a month depending on
severity.

The CDC's Web site adds that some people with Lyme disease left
untreated may experience "cognitive disorders, sleep disturbance,
fatigue and personality changes," and that the condition may become
severe, chronic and disabling, though is "rarely, if ever" fatal. The
site says some patients may have recurrent symptoms and require
repeated treatments for up to two years.

Then there's the opposing side, where other medical practitioners and
patients' groups (and now, Tan) advocate a broader view of the
disease that includes less predictable symptoms.

The Bethesda-based International Lyme and Associated Diseases Society
(ILADS) contends that fewer than 50 percent of Lyme patients recall
either a tick bite or a rash. They also claim the CDC's standard
tests often fail to identify the disease.

Furthermore, they maintain that the CDC's standard course of
antibiotic treatment is too brief to provide a lasting cure for many
and may even leave the bacteria morphing and thriving inside the
body, where they can wreak permanent neurological damage.

Gregory Bach, an ILADS board member with a family practice near
Philadelphia, says the standard methods miss many people with Lyme,
exposing them to harm. Among his clients, "we found that 50 to 90
percent of those tested [by the CDC's initial screening method and
not diagnosed with Lyme] subsequently tested positive by other
tests."

Paul Mead, an epidemiologist for the CDC, says "certainly this is an
area of considerable controversy. There's no question that some in
the community have taken exception to the criteria for diagnosis
developed by expert panels . . . Testing is a complicated issue that
we and others are looking into in further detail. It'd be nice if all
the tests were subjected to rigorous validation," he says, but
questions remain about the tests and lab analysis of those in the
alternative camp.

The reality at this point "is that there is no answer," writes
physician and Harvard Medical School assistant professor Jonathan A.
Edlow in his new book, "Bull's-Eye: Unraveling the Medical Mystery of
Lyme Disease" (Yale University Press, $29.95). "There is something
that everyone agrees on: There are these patients who have classic
symptoms. The earlier they're treated, the more likely they'll have a
good outcome.

"Beyond that," he qualifies, "you have the divergence."

The No Luck Club

Tan's story illustrates how difficult diagnosis and treatment can be
for someone whose case does not conform to the standard course. Tan
didn't realize how tiny the tick could be -- about the size of the
period at the end of this sentence -- and her rash never fit the
standard description. As bothersome as her months of joint pain,
occasional numbness, headaches and memory lapses had become by 2001,
she accepted numerous medical opinions writing them off as signs of
getting older. (She was 49.) But she couldn't laugh off the
hallucinations and memory lapses.

Both Tan's father and her older brother had died from malignant brain
tumors. Her mother had a brain tumor, too, though hers was benign;
she died after having been diagnosed with Alzheimer's disease.

"I certainly considered [that I might be suffering from]
Alzheimer's," Tan admits, "especially when I started having memory
problems, and hiding mistakes that I'd made. I thought that must have
been what it was like for my mother."

While her doctors quickly ruled out either those possibilities, they
could not tell her what was wrong, even after two CAT scans, an MRI
and a 48-hour hospitalized fast.

She broached the possibility of Lyme disease, but her doctor "told me
three times he really didn't think I had Lyme, that we didn't have it
in California, and that it was rare."

Tan reminded him that she and her husband split their time between
the West Coast and New York, but the doctor was unmoved, she said.
They left it at that.

A Battle Over Bites

Since Lyme disease was first detected in the United States in 1975,
warnings about the risk of deer-tick bites have become routine public
safety reminders each summer, along with tips about using sunscreen
and avoiding rip tides at the beach. Though it may not be as in vogue
as SARS, monkeypox or even White Nile disease, Lyme disease continues
to proliferate, in its number of victims, geographic reach and
medical controversy.

Cases have been reported in every state except Montana, with the
overwhelming majority concentrated in the coastal Northeast and Mid-
Atlantic states and in Minnesota, Wisconsin and northern California.

Of the 17,029 cases reported to the CDC in 2001, there were 608 in
Maryland, 156 in Virginia and 17 in the District. The national total
increased by more than 33 percent between 1991 and 2000.

The CDC adds that while reported cases of the disease have been
increasing -- it theorizes that people are being exposed more often
to ticks because tick populations are becoming both more dense and
widely distributed -- "the disease [remains] greatly under-reported."

As the NIH details on its Web site (www.nih.gov), the particular
spirochetes (spiral-shaped bacteria) associated with Lyme are
notoriously difficult to diagnose and troublesome to treat in their
later phases -- not only because they can change their appearance but
because Lyme disease is similar to but separate from other diseases
transmitted by different ticks. For diagnosis, the CDC recommends
either of two blood tests for mid- or late-presenting cases: an ELISA
(enzyme-linked immunosorbent assay) or IFA (indirect fluorescent
antibody) test, followed by a Western Blot test.

The CDC's position is that the tests are reliable for late disease;
ILADS counters that they miss fully half of late-stage cases.

Unfortunately, Edlow notes, both the ELISA and the Western Blot are
imperfect, with frequent false negatives in early testing; in other
words, they fail to identify many patients who have the disease.
Since the production of antibodies, for uncertain reasons, is a
little slower against Lyme than against many other infectious
diseases, testing is not recommended within the first month of
suspected exposure.

The ELISA, however, also routinely presents false positives --
identifying disease-free people as having Lyme. A random sampling of
100 people might -- due to bacteria as relatively benign as those
that cause gingivitis -- suggest that five of them have Lyme, when in
fact they have gum disease.

This is why the Western Blot, which produces fewer false positives,
is used as confirmation.

Still another problem, though, is that there's disagreement about how
to properly interpret a positive Western Blot test. While the test
measures which antigens, or proteins, a patient's blood contains
antibodies to, there remains technical disagreement over exactly
which are significant and to what degree.

The CDC doesn't accept as relevant to a diagnosis of Lyme as many
bands -- measures of antigens -- as private labs like IGeneX (a
California lab run by Nick Harris, a doctor and ILADS board member)
measure.

Shared criteria can also be interpreted differently. Even when the
CDC and IGeneX agree on which bands are indicative, Edlow adds, a
patient could test positively to the blot, "but have gotten [the
disease] three years ago. That doesn't mean you have active
infection, even though the antibodies remain positive."

"As with most things Lyme," Edlow says, "it depends on whose opinion
you believe and how you define Lyme disease.

"There's legitimate controversy," he continues. "While we all prefer
unambiguous results, that's just not possible the way these are
used."

Life, Interrupted

Tan says she is "not terribly angry with any of my doctors" for
having missed her diagnosis, though the roster included her primary
care physician, an endocrinologist, a sleep-disorder specialist, two
neurologists, a cardiologist and an orthopedic surgeon. "They were
doing the best they could."

"I'm angry at the California Medical Association," she says, "because
they have a board policy that recommends that all Lyme disease
patients be treated with 10 days' antibiotics. I'm angry that they
perpetuate the myth that it's rare, easily tested and easy to treat.

"I'm mad at insurance policies. . . . I'm a typical long-term Lyme
patient who's seen a lot of doctors and had a lot of expensive tests
done," Tan continues. While she could afford to spend more than
$50,000 on diagnostic tests before learning what was ailing her, "I'm
luckier than most -- there are many who have it far worse than I do."

"I know people who've lost homes, everything they have. I'm mad at
the arbitrary saying that it's two weeks' treatment regardless of
what's happening to you."

Nearly half a year before Tan's hallucinations began, she had
returned home after a four-month, transoceanic book tour for her
novel "The Bonesetter's Daughter." The persistent fatigue plaguing
her before she started her itinerary had become life-consuming.

The day-long sleep that she first wrote off to jet lag didn't
suffice; in the weeks that followed, she would sleep for 12 to 20
hours a day. Even more disturbing were the trembles that punctuated
her sleep, waking her every two or three hours with what she
called "Dolby Digital Syndrome" -- a feeling of constant vibration,
like reverberation from a bass-heavy stereo.

When she shortly began waking each day with a sore neck, Tan bought a
new buckwheat pillow. She tried another type, and still another,
adding everything from Tempur-Pedic foam to a U-shaped neck roll.

As the weeks turned into months, the mental toll turned from an
extended writer's block to an inability to maintain concentration or
short-term memory.

"By page three or four [of her writing], I was unable to recall
anything and had to begin anew," she says. At the dinner parties, "I
often couldn't keep up with the repartee. . . . I nodded and laughed
at the moments when everyone else did."

She decided to consult a psychiatrist for the first time in nearly 20
years; the doctor in turn suggested she also get a complete medical
workup.

Finally, after comparing what she knew with what other patients
reported on the ILADS Web site (www.ilads.org), Tan discovered Rafael
Stricker, a Lyme specialist in San Francisco.

Stricker says Tan's "clinical symptoms and history were very
suggestive: striking psychiatric problems and hallucinations, which
you can see with Lyme disease."

He tested her with a Western Blot, and had it analyzed by IGeneX.

Stricker says Tan has tested positively on the Western Blot five
times in a row. Among the 16 antigen bands that IGeneX identifies,
her tests "have been pretty uniform," with positives for seven or
eight bands each time. She has consistently tested positive for two
of the three bands the CDC considers accurate indicators of Lyme, he
says. He considers her diagnosis conclusive.

Stricker points out that as a public health agency, the CDC is
interested mainly in surveillance and less in clinical applications
of tests. "They're not as concerned in missing something, while I
want a test that works for my particular patient's diagnosis."

The CDC's Mead confirms that the agency's analysis of the Western
Blot requires a minimum of two of the three bands for a positive
diagnosis, and that "this is a surveillance-case definition," which
is useful for tracking the disease but may not be sufficient for a
specific patient.

"It's a balancing act," he says. "It's true that to a certain extent
[we] have different objectives. A clinician can treat, just in case,
to help his patient. Nevertheless, there can be problems with over-
treatment [with long-term, powerful antibiotics]. Overall it's not
helpful to treat someone without a disease."

Stricker recently changed Tan's antibiotic medication to Flagyl
(metronidazole) from doxycycline. He says recovery is usually
progressive: "Usually when they feel better, they stay better, though
there's possibility of relapse. Sometimes it requires months" of
treatment for a complete cure, he says. "Sometimes it requires
years."

That Tan's answer hadn't been discovered through the CDC's diagnostic
protocols doesn't surprise Edlow. After all, he says, the Borrelia
burgdorferi spirochetes "are weird bugs. Part of the way that they
evade the immune system is to morph, or change themselves to appear
like a new bug to the immune system. Or they don't. Or else patients
have one or another or more than one at the same time. It gets kind
of tricky."

Tan meanwhile argues that Lyme disease patients can't afford to wait
for the science to inch its way forward. Her imagination still reels
at the thought she was tested for both syphilis (after 29 years of
marriage) and Lou Gehrig's disease before her doctors considered her
for what the CDC terms "the leading cause of vector-borne infectious
illness in the U.S."

"I've never met a single person in my lifetime who had ALS, but they
tested me for that before Lyme disease," Tan adds. "It's not the way
the medical community should be dealing with these very real problems
that people are having."

Imputing her symptoms to age strikes her as no more logical.

"Did most baby boomers lose their hair in clumps? Did [they] read e-
mails and respond at length, then have no memory of doing either?
Were they amazed to read unfamiliar pages of stories they had
evidently composed? . . . Did they become lost in their own
neighborhoods, unable to recognize any familiar landmarks, too
mortified to ask for help?"

As she concludes in an essay from her upcoming book "The Opposite of
Fate" : "I am in this for the long haul, with treatment that will
likely last for years. I won't feel safe until the scan of my brain
and blood tests on my immune system return to normal, until the
Western Blot is negative for Lyme disease, and my myriad symptoms are
gone. . . . By having Lyme disease, I have automatically been drawn
into the medical schism over both its diagnosis and treatment."

"I now know what is the greatest damage that Borrelia has caused: It
is ignorance."*


� 2003 The Washington Post Company


 

I feel really lucky to be right here in New York so I can get here easily.

I do not yet know about taping, but will let you know as soon as I do. I promise to get on here and let you know everything - although I'll need a little recovery time after the event.
Ellen

I just spoke to Tincup who is fine. She can't get on line for a while.

So she asked me to let you know that "Tincup says to keep this thread near the top."
Ellen
 

The event is this Thursday. Please come. With famous authors AND two of our foremost doctors , how could this be anythng less than fabulous.
Ellen

 

It takes a lot of courage for a celebrity to go public with this ailment. We've been waiting for spokespersons and an event like this a long, long time.

This brave group of illustrious writers deserve to be backed to the hilt.

In line with this I just found out that the event will not be taped. The main reason is that there will be a lot of personal discussion Taping would tend to inhibit people from speaking about their struggles with this disease.

Because there will be frank discussion of how Lyme affects people's lives and because two of our best doctors will be able to fill out the picture by explaining the science of the illness, this is a great event to bring family and friends whom you want to understand what you're going through.
Ellen
Ellen
 

Thank you Lyme-literati and LLMDs who are participating!

[This message has been edited by FightFireWithWater (edited 19 May 2005).]