Amazing Crowd Attend Lyme Disease Awareness Network Fundraiser - WI

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'400','10','5') Land O’ Lakes musical duo

Frisk (left) and Bret headlined the Lyme Disease Awareness Network’s

May

3 “Concerts for a Cause†fundraiser at Ascension Lutheran Church in

Minocqua. The s donated the concert to the LDAN. Funds raised by a free

will

offering taken at the concert will fund LDAN Lyme education efforts and help

defray the medical expenses of five-year chronic systemic Lyme disease victim

Kane, an Arbor Vitae resident. A. photo'Absolutely

amazing' crowd attends network's 'Concerts for a Cause' fundraiser

Inaugural fundraising concert entertains, educates public

_ _ (mailto:ejohnson@...)

Reporter

More than 200 Lakeland area residents filled the sanctuary at Ascension

Lutheran Church in Minocqua on Saturday, May 3, as the Arbor Vitae-based Lyme

Disease Awareness Network hosted its inaugural " Concerts for a Cause "

fundraiser.

Proceeds from the benefit concert, headlined by Land O' Lakes

husband-and-wife musical duo Bret and Frisk , were earmarked to support

LDAN's Lyme

disease education efforts and defray the Lyme-related medical expenses

incurred by Arbor Vitae resident Kane, who is in the midst of a

five-year

battle with debilitating chronic systemic Lyme disease (Lakeland Times, April

29).

" It's very heartwarming to see the number of people that turned out, " said

Kane's father, Arbor Vitae-resident Waite, co-founder of the Lyme

Disease Awareness Network. " Everybody's been so supportive of Jenn and the

[Lyme

Disease Awareness Network] cause. It's been a truly wonderful experience.

It's absolutely spectacular to see this kind of support. This is an outstanding

outpouring of support. We highly appreciate it. "

Kane, in attendance at the concert, said she was " really overwhelmed " by the

turnout and show of community support.

" I'm shaking right now, " she said. " It's absolutely amazing. "

Kane said she was particularly gratified by the opportunity to educate area

residents on the Lyme problem in Wisconsin, one of the nation's leading

endemic areas for the disease.

For all of its prevalence, Lyme is one of the most mysterious and important

but least discussed diseases currently plaguing the U.S.

The federal government's Atlanta-based Centers for Disease Control estimates

that more than 200,000 people are infected with Lyme disease each year, a

number greater than that of new cases of AIDS, West Nile Virus and Avian Flu

combined.

" I'm excited, " she said. " I'm glad that we're making a difference and people

are taking it (Lyme) seriously. I'm glad we're getting the word out. "

Concert educates public

Waite, who served as master of ceremonies for the concert, provided

those in attendance with a brief overview of Lyme disease.

" It's real important, we believe, that no one else ... suffer like our

daughter, Kane, " he said, noting another longtime chronic Lyme

sufferer,

Wausau resident Nichol, was attending the LDAN concert. " It's a

horrific disease if you don't know what to look for and you let it go. It will

devastate you. It will ravage your body. That's what happened to our Jenn for

the

last five years. She has fought like a trooper all the way through it. We're

very proud of the battle that she's fought and the battle that she's winning,

but it's still a long battle.

" The real issue is it doesn't have to be that way if you know what to look

for, you know the symptoms. It doesn't need to be a ravaging and devastating

and debilitating as it has been for some, like Kane and Nichol,

two poster children for this whole cause. They have both fought terrific

battles, they're both going to win them and they're going to win them with the

support of people like you. "

Waite, who retired from his military consulting career at age 55 to become

his daughter's full-time medical advocate, urged concertgoers to educate

themselves on the signs and symptoms of Lyme disease infection, which mimics a

variety of ailments including multiple sclerosis, Lou Gerhig's Disease, lupus,

chronic fatigue syndrome, fibromyalgia, autism, Alzheimer's, Parkinson's,

migraines and hormonal-related headaches.

" There are multiple symptoms that it can present itself with - everything

from headache to joint pain to heart palpitations to fevers to flu-like

symptoms, " he said. " It (Lyme) is called 'The Great Imitator' for one very good

reason - it imitates most of what's out there in one way, shape or form... "

Waite advised concertgoers not to put their faith in current Lyme disease

testing.

" Key point - if you've been tested for Lyme, know that the test is only 50

percent accurate according to a test by s Hopkins, " he said. " Actually,

it's a little less than 50 percent accurate. If I think I have Lyme, I can flip

a coin and make the decision of whether I get treated or not. Not a good way

to go about treating Lyme disease. "

If a person tests negative for Lyme but still suffers from various

Lyme-indicating symptoms, Waite urged seeking proper medical treatment.

" You've got to find a doctor who is willing to work with you and give you a

clinical diagnosis - they're going to look at your symptoms and look at your

history, " he said. " If there's a high probability you have Lyme, they will

treat you for it with antibiotics. "

A major key in fighting Lyme, Waite said, is taking control of one's

healthcare.

" You must become your own advocate, because there is a tremendous division

in the medical community on how to treat Lyme disease, " he noted. " If you

become your own advocate, what that means is you will learn more about Lyme,

you

will do your own research and you will make your own decisions - you won't

have someone else making them for you. You'll end up making the right decisions

for yourself because you'll be making informed decisions. "

Reporting on the activities of the Lyme Disease Awareness Network, Waite's

wife, Jillayne, reported that 3,000 educational Lyme awareness flyers have

been distributed through area schools and churches over the past month. An

additional 10,000 flyers are being distributed around the area.

Among other thank you's, Waite thanked her daughter for sharing her

difficult story with the wider community.

" It's not a happy story, " she said, her voice wavering with emotion. " By

allowing them to hear your story, hopefully no other mom has to feel the way I

feel. "

Kane also spoke, sharing insights from her ongoing five-year battle with

chronic systemic Lyme disease, one she soon hopes to win with new experimental

long-term antibiotic pulse therapy treatments currently underway.

" Thank you for helping us be advocates for others, so nobody else has to go

through what I've gone through, " she said. " ...My hope is that you take it

(Lyme) seriously... We all need to be advocates and reach out into the

community. We can make a difference... "

Illustrating the far-reaching effects of Lyme, Kane invited community

members in successive, growing waves to stand up - past or current Lyme

sufferers,

followed by those who have had family or friends inflicted by Lyme.

Kane ended by inviting all in attendance at the benefit concert to stand to

show their support for Lyme education and advocacy.

" Together, we can ... get the word out, " she said. " Together, we can all

make a huge difference. "

Minocqua resident Don Stifler, a member of the LDAN board, agreed.

" It (Lyme) is really serious, " he said. " ...But we can tackle this

disease... "

Many attendees touched by Lyme

Among those attending Saturday's fundraising concert was Joan Droszegi of

Presque Isle, who was attracted by the retro nostalgic music of Bret & Frisk

and a personal concern about Lyme disease.

Noted Droszegi, " I've got two brothers who've had it. "

Also learning about Lyme and showing support at the benefit concert was

Arbor Vitae resident Nei.

" I've had Lyme disease, " he said. " It knocked me off my feet last October,

for a month, and then again in the middle of winter this year... "

Nei said it was eye-opening to see how widespread Lyme and its impact is in

the community.

" I was surprised at the number of people that have been affected by Lyme

disease, either directly or through a family member, " he said. " It's appears to

be pretty serious problem. I was fortunate enough to stumble upon a doctor in

the community, who is no longer here, who picked up on it (Lyme) after a

week-and- a-half of treatment in another direction, changed my antibiotic ...

and I felt a whole lot better within a week... "

Groundbreaking documentary

Saturday's benefit concert included the viewing of a two-minute preview

trailer for Open Eye Pictures' newly-released 103-minute documentary film

" Under

Our Skin: The Untold Story of Lyme Disease. "

The documentary investigates the human, medical and political dimensions of

Lyme disease, an emerging epidemic destroying the lives of untold Americans

who go untreated or misdiagnosed annually.

Described by director Abraham in a press release as " a

chilling tale of the pursuit of profit and prestige at the expense of science

and

very sick patients, " the documentary follows the stories of patients and

physicians as they battle for their lives and livelihoods in the wake of their

chronic Lyme infections.

" Under Our Skin " was produced and directed by Northwestern University and

USC Film School alumnus Abraham , an Emmy-nominated and

award-winning producer, director and cinematographer. The film is the work of

Sausolito, Calif.-based Open Eye Pictures, an award-winning, non-profit

production

company specializing in creative educational media. Open Eye was founded by

in 1994.

The groundbreaking documentary film, three years in the making, had its

world premier showing on Saturday, April 26 at New York City's 2008 Tribeca

Film

Festival, where the film was feted by festival organizers as " a compelling,

informative and emotional experience... "

The Tribeca Film Festival was established by DeNiro, Jane Rosenthal

and Craig Hatkoff in 2001 in the wake of the 9-11 terrorist attacks on the

World Trade Center to spur the economic and cultural revitalization of lower

Manhattan through an annual celebration of film, culture and music.

" Under Our Skin " was also recently named an official film selection for the

May 15-18 Berkshire International Film Festival in Great Barrington, Mass.

A planned May 12 New York City launch party for the film at the New York

Times Center is sold out. The film launch event is being sponsored by Open Eye

Pictures and the Turn the Corner Foundation, a non-profit organization

dedicated to research, education, awareness and innovative treatments for Lyme

and

other tick-borne diseases. Proceeds from the film launch party will be used to

fund the documentary's distribution.

Noting his daughter is among those featured in 's Lyme documentary,

Waite told those attending Saturday night's " Concert for a Cause " s

fundraiser that the Lyme Disease Awareness Network is working with Open Eye and

Eagle River-based Conway Theatres to coordinate an area run of " Under Our

Skin " at the Lakeland Theater in Woodruff.

" It's a real revealing story - a heart-wrencher, " he said of the

documentary. " When you look at the stories of people like Jenn, like , who

have

just been ravaged by the disease, it's a heart-wrencher ... Please take the

opportunity to view it. You'll probably not come out of it feeling real good

about what the disease can do to people, but you will feel good about what we

can

do to help people who've been afflicted by the disease - supporting them

physically, mentally, socially. "

Dates and times for the local run of " Under Our Skin " will be announced at a

later date as details become available.

Community support praised

In a follow-up Tuesday morning interview with The Lakeland Times, Jillayne

Waite said generous financial support from the free will offering collected at

the benefit concert will " put a huge dent " in Kane's medical bills. Monies

raised will also allow the LDAN to take out 20 weeks of once-weekly

educational display advertisements in The Times.

She said additional donations are being received by LDAN in the wake of the

concert, noting numerous concert-goers had sent supplemental donations after

they returned home, moved by what they had learned during the Lyme awareness

presentations at the concert.

Waite said LDAN is also appreciative of its many other supporters, including

Bret and Frisk , who provided the concert free of charge, and

Ascension Lutheran Church, which provided free use of the building for the

benefit

concert.

Other contributors along the way included Minocqua-based Printing

Innovations, which provided free printing of 10,000 educational Lyme disease

flyers,

and Woodruff-based Tech Geek, which provided the technical support for the

movie trailer video presentation.

Time after time, Waite said the Lakeland area community has banded together

to help their neighbors in their time of need with amazing displays of

generosity.

" It's not just our story, " she said. " When people heard about Woody Woodruff

and the fire at his building (Loon Land/Twisted Root Emporium), people said,

'What can we do to help Woody?' And when Spang's burned, the community had a

huge [benefit] dinner for the Vance family. We have a terrific community, we

really do. "

Breaking news

Waite told The Times at the concert that there is major breaking

news in the battle against Lyme disease, which has been the focus of

considerable scientific, political and medical controversy since the

infection's 1975

identification and naming.

On Wednesday, May 1, Connecticut Attorney General Blumenthal

announced the findings of his antitrust investigation of the Arlington,

Va.-based

Infectious Diseases Society of America (IDSA). The landmark anti-trust

investigation is the first ever against a medical society's guidelines

development

process.

Blumenthal's investigation uncovered serious flaws in the IDSA's process for

writing its 2006 Lyme disease guidelines.

While the IDSA's current Lyme disease treatment guidelines will remain in

effect under the settlement agreement, the IDSA is voluntarily agreeing to

perform a one-time special complete review of Lyme disease guidelines with the

assistance of an outside arbiter, updating or revising the guidelines as

necessary.

The existing IDSA Lyme guidelines have sweeping and significant impacts on

Lyme-related medical care, strongly influencing physician treatment decisions

and commonly used by insurance companies in restricting and often denying

coverage for long-term antibiotic treatments or other medical care not falling

within the guidelines. The ISDA guidelines are also widely cited for

conclusions that chronic Lyme disease is nonexistent.

ISDA guidelines are treated as mandatory within the medical community. More

than 50 U.S. physicians who use longer-than-usual antibiotic treatment

regimens for their Lyme patients outside ISDA guidelines have been investigated

or

sanctioned by state medical boards nationwide.

" This agreement vindicated my investigation - finding undisclosed financial

interests and forcing a reassessment of IDSA guidelines, " Blumenthal said in

his May 1 press release. " My office uncovered undisclosed financial interests

held by several of the most powerful IDSA panelists. The IDSA's guideline

panel improperly ignored or minimized consideration of alternative medical

opinion and evidence regarding chronic Lyme disease, potentially raising

serious

questions about whether the recommendations reflected all relevant science.

The IDSA's Lyme guideline process lacked important procedural safeguards,

requiring complete reevaluation of the 2006 Lyme disease guidelines - in effect

a comprehensive reassessment through a new panel. "

The new panel, comprised of 8-12 members, none of whom served on the 2006

IDSA guideline panel, will accept and analyze all evidence, including divergent

opinion. An independent neutral ombudsman - expert in medical ethics and

conflicts of interest, selected by both the IDSA and Blumenthal's office - will

assess the new panel for conflicts of interests and ensure its integrity.

Blumenthal and the IDSA, it was announced, have agreed to appoint Dr.

A. Brody as ombudsman.

Brody, director of the Institute for Medical Humanities at the University of

Texas Medical Branch and the author of " Hooked: Ethics, the Medical

Profession and the Pharmaceutical Industry, " is a recognized expert on medical

ethics

and conflicts of interest.

Among the findings of Blumenthal's investigation were failure by the IDSA to

conduct a conflict of interests review for any of its panelists prior to

their appointment to the 2006 Lyme disease guideline panel. Subsequent

disclosures demonstrated that several panelists had conflicts of interest.

" The IDSA's 2006 Lyme disease guideline panel undercut its credibility by

allowing individuals with financial interests - in drug companies, Lyme disease

diagnostic tests, patents and consulting arrangements with insurance

companies - to exclude divergent medical evidence and opinion, " Blumenthal

noted.

" In today's healthcare system, clinical practice guidelines have tremendous

influence on the marketing of medical services and products, insurance

reimbursements and treatment decisions. As a result, medical societies that

publish

such guidelines have a legal and moral duty to use exacting safeguards and

scientific standards. "

Other findings in Blumenthal's investigation found:

• The IDSA failed to follow its own procedures for appointing the 2006 panel

chairman and members, enabling the chairman, who held a bias regarding the

existence of chronic Lyme disease, to handpick a like-minded panel without

scrutiny by or formal approval of the IDSA's Oversight Committee.

• The IDSA's 2000 and 2006 Lyme disease panels refused to accept or

meaningfully consider information regarding the existence of chronic Lyme

diseases,

once removing a 2000 panelist who dissented from the group's position on

chronic Lyme disease to achieve " consensus. "

• The IDSA blocked appointment of scientists and physicians with divergent

views on chronic Lyme who sought to serve on the 2006 guidelines panel, by

informing them that the panel was fully staffed, even though it was later

expanded.

• The IDSA portrayed another medical association's Lyme disease guidelines

as corroborating its own when it knew that the two panels shared several

authors, including the chairmen of both groups, and were working on guidelines

at

the same time. In allowing its panelists to serve on both groups at the same

time, IDSA violated its own conflicts of interest policy.

Waite told The Times that he was encouraged by the agreement to revisit the

IDSA' 2006 Lyme treatment guidelines.

" The thing that's important about this is that it is these guidelines that

are creating problems in the medical community, " he said.

can be reached at _ejohnson@..._

(mailto:ejohnson@...) .

Coughlan

President

MA Lyme Disease Awareness Assoc.

Mashpee, MA

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