I just turned on NBC to see weather report, and who do I see first thing - Dr. B, being interviewed.
Also featured, a chronic Lyme patient who claims she is "clear of all Lyme Disease".
DLL
By Robin DeMerell
NEWS-TIMES CORRESPONDENT 2004-11-08
Brooke Landau, a native of Ridgefield, will share the story of her fight to overcome Lyme disease this week on NBC`s "Today" show.
Brooke Landau had it all.
The former high-fashion runway model had just graduated from college and was embarking on a career as an international marketing manager with a Fortune 500 company.
Then a bite from a bug no bigger than a poppy seed changed all that. Her life was put on hold as she spent the next seven years battling a disease that almost cost Landau her life.
A 1990 graduate of Ridgefield High School who lives in California, Landau was diagnosed with Lyme disease in 1995.
"Doctors told me I might not live. But I had a different plan in mind," Landau said. "I've spent the last 71/2 years fighting for my life and my health - and surviving."
Later this week, Landau will tell her story on NBC's Today show on a segment that features survival stories.
"I wanted to talk to others because I would not have been sick for 71/2 years if the insurance companies didn't make money off of sick people. It's business," Landau said. "They were unwilling to help find a cure."
Despite all the warnings, Landau, now a 32-year-old freelance reporter and producer, never worried about contracting Lyme disease. "I lived in Connecticut my whole life with deer in the back yard," Landau said. "I never thought twice about it. It's very scary. I don't think people can realize it can be a death sentence."
While at her parents' home in Ridgefield in 1995, Landau remembered finding a tick on her leg. But the first symptoms didn't appear for more than five months. "I literally took a walk out the door to the mailbox," Landau said. "I didn't think anything of it."
Landau, daughter of Frank Landau, now of Southbury and Dianne Landau of Malibu, Calif., said the disease attacked her suddenly. One day, she was fine and the next day she couldn't move her head or her legs.
"On that fateful day, I was rushed to the (Norwalk) hospital," Landau said. "Doctors there informed me that I would die within 48 hours if I did not undergo an emergency spinal tap. From the tap, the doctors diagnosed me with Lyme disease and spinal meningitis."
She gave up her job and spent the next several months in her parents' Ridgefield home. Every day brought crippling headaches, muscle and joint pain and fatigue. Landau said she often was rushed to Danbury Hospital for emergency treatments.
She experienced short-term memory loss and loss of hearing in her left ear. She began to lose sight in both eyes, developed heart arrhythmia, gallstones and colitis. She lost 30 pounds from her already thin frame - at one point the 6-foot-tall former model weighed 120 pounds.
She has undergone various invasive procedures and treatments that included taking 27 pills a day.
"Yet nothing has restored me to the pain-free condition I once knew," said Landau, who has undergone seven spinal taps and two surgeries.
In 1996, Landau moved to Miami in hopes a warmer climate would lessen her joint pain. But, as the illness progressed, so did the pain.
She eventually met a doctor who Landau said saved her life.
By undergoing experimental treatments five years ago, Landau is able to do everything she could before - including working out at a gym, salsa dancing five days a week and playing volleyball on the beach. "None of which I could do for years," she said.
"Brooke is a fighter," said her father. He remembers when she had several operations as a baby to correct a congenital heart defect. "It made her very tough. As a child, she always knew what she wanted. Her stick-to-it-iveness really showed during her illness. We're proud that she's never given up. But nobody should go through this stuff."
Because she was considered a research subject, she wasn't responsible for the medical costs that mounted to several hundred thousand dollars.
Treatment consisted of pumping high doses of antibiotics into her heart for 24-hours a day for two months. She also underwent 30 days of treatment in a hyperbaric oxygen chamber.
"It felt much like lying in a glass-enclosed coffin," she said. "The treatment was torture, but on the last day of treatment, I awoke free of joint pain for the first time in years. My hearing improved, my sight was better and I even regained my short-term memory." Although she was bedridden for more than a year during treatment, Landau wanted to be productive. She started a non-profit foundation working on her computer in bed. Sponsored by MAC Cosmetics, The Children's Alliance Network (CAN) organizes models and make-up artists to do makeovers for sick children.
"I was doing a lot while I was sick," Landau said. "But I would pay for it. One day of work could put me in the hospital for a week. I really believe that you can't curl up in a ball and let the illness get the best of you."
Since the treatment, Landau considers herself almost cured. The only symptom left is the headaches.
"They say I'm cured and that it's out of my system," Landau said. "They've determined I don't have Lyme disease anymore."
Landau went on to be a television anchor and reporter for CBS and ESPN. She now works as a freelance reporter for ESPN and a freelance producer for E! Entertainment.
The "Today" show opportunity came when she and an NBC reporter were covering the same story.
"Though I will probably have some measure of chronic pain throughout my life, I consider myself among the lucky," Landau said. "Through it all I've found an inner strength to fight and survive."
just sent me the transcript for this:
Trout
Do you really believe she is Lyme free?? It's hard to believe but I guess it's cause I've been doing worse and not better.
Jenn
I don't know if I've heard of that particular treatment though. I'm extremely claustrophobic, so I know I couldn't do it! I heard of the oxygen treatment, but never the abx directly into the heart.
I hope she's totally lyme free, it gives hope to us all, but how do you ever know?
She did a good job.
The ONLY thing that was a negative.....they brought up the darn deer tick again...argh.
Fact is...Any tick can carry Lyme...but not EVERY tick can GIVE you Lyme.
Trout
Thank you NBC!
------------------
Lyme Disease Help
http://www.wildcondor.com
Trout
I'm Sooooo glad that they didn't interview a duck from the other camp. It would've been a slap in the face.
Until they have a more efficacious treatment modality, detractions don't help.
I'd like to see Katie, Matt, & the gang get involved in the cause and help spread awareness.
[This message has been edited by Foggy (edited 01 December 2004).]
Unfortunately, I missed the story (I was still asleep). It sounds like it was a good story and a good, national way to bring some more light to Lyme disease. I'm glad she got better, and it does help to give me a little hope that it's possible to recover. Like she said, though, she's one of the lucky ones and we all might not be as lucky.
I did want to say that I think the IV antibiotics being administered directly to her heart is just the same as IV antibioics the way they're always done with a PICC line or chest port or other chest IV - the line ends at the heart so the medicine IS being administered directly into the heart. It just sounds more intense when you say that it's administered directly into your heart. I wonder if constant IV antibiotics could help some of the rest of us who have had so many treatment failures.
--Annie
------------------
``The best way out is always through.'' -Robert Frost
Click here to see my Lyme journal.
Lyme Out Retreat Information Webpage
Can anyone tell me what time the Today Show is on here on the west coast? And what channel? (I have no idea what channel NBC is)
Maybe I can record it since I won't be able to watch it...if I catch it in time, that is.
Thanks!
Jenn
I'll check and see if I can still catch it. I have no idea how these networks plan their daily schedules between the coasts. Maybe, I'll get lucky. 
Thank you for posting this. I'm on mountain time and right after I saw this post ran downstairs to turn the TV on and caught the lyme disease part within 5 minutes.
Again, Great job Brooke!
Heart sick mommy, I'd turn the TV on now! It's 8:33 MST where I live and your 1 hour behind me so hopefully you won't miss it.
Patio Gazer, they pumped abx directly into her heart because she was not responding to tx and they wouldn't give the dr.'s name. The state where he practices (FL I think) is trying to yank his license.
Does anyone know of someone on this board whos had lyme and been symptom free for over 2 years without relapses? I've read the posts about success stories just like everyone else and am curious.
Hope that helps.
Yes....the abx in IV form with a PICC is the same.......the constant feed is another thing...that and the hyperbaric chamber.
Trout
--Annie
------------------
``The best way out is always through.'' -Robert Frost
Click here to see my Lyme journal.
Lyme Out Retreat Information Webpage
quote:
Originally posted by arg82:
I did want to say that I think the IV antibiotics being administered directly to her heart is just the same as IV antibioics the way they're always done with a PICC line or chest port or other chest IV - the line ends at the heart so the medicine IS being administered directly into the heart. It just sounds more intense when you say that it's administered directly into your heart.
Exactly...You took the words out of my mouth!
------------------
oops!
Lymetutu
[/QUOTE]
This makes it sound like she's hooked up to a constant abx I.V. drip. I agree that abx might be in her system 24 hours a day though, but not that they're being pumped 24 hours of the day.
[This message has been edited by kaos (edited 01 December 2004).]
or
You can mail a letter to:
NBC News
30 Rockefeller Plaza
New York, N.Y. 10112
Transcripts for NBC News Programs are available for purchase through the Burrell Transcript Service by calling 1-800-777-TEXT.� Only selected segments of our news magazines are available on VHS cassette.
Then near the top there is a section for 'More Today Show Video'
Scroll thru to story 5 (of 10)
Click Launch.
You can watch it here!
[This message has been edited by Crystal (edited 01 December 2004).]
Shucks! I'm in bed at that time also. Glad someone posted what the article..live interview was about..
I'd read her story lately on lyminfo site.
Brooke, glad you got to share your story; please let us know when the other part of the story will be on so we can set our VCRs for those of us lymies still in bed.
I'd sure like to see 2nd half involving you children.
Kent, thanks for headsup that she participates here. Betty G., Iowa
[This message has been edited by bettyg (edited 01 December 2004).]
[This message has been edited by newlymepatient (edited 01 December 2004).]
The whole bit about the IV line in her heart is kind of misleading - made to sound much more drastic and unconventional than the reality of it that so many of us live with (or have lived with) on a daily basis. PICC lines and other IV lines really aren't that weird. But, regardless, the whole story was very well done, I think, and I'm so glad the Today show decided to do it! If only other shows would follow suit!
--Annie
------------------
``The best way out is always through.'' -Robert Frost
Click here to see my Lyme journal.
Lyme Out Retreat Information Webpage
Lymiecanuck
Also told about my elderly father (was mis-diagnosed with Alzheimer's) getting a Lyme diagnosis too late. The many complications caused his death.
I had Lyme 5 to 10 yrs before diagnosis.
Now my 12 yr old grandson has been diagnosed with Lyme Encephalopathy.
Closed with the following:
"The Today Show will never know how many lives were changed for the better because of the broadcast this morning."
I hope they are flooded with e-mails about the Lyme segment.
I should have been interviewed too!
I think I may just be the only patient who is still alive who has done hyperbaric oxygen treatments twice daily while on a 24 hour IV drip. I may also be the only Lyme patient still alive who survived IV line infection to my heart and bloodstream not once, but TWICE. I was finally diagnosed with Lyme disease 10 years after I was infected, and have since been re-infected multiple times, plus the addition of the co-infections.
To clear up any confusion, when you are on continous infusion IV drip you have a catherter (Hickman or Port) inserted into your heart and an IV line attached to the catheter. A small medicine bag that looks like a tennis ball is filled with antibiotics (usually 4 grams of Rocephin, or 12 grams of Claforan) and is pumped into your IV line 24 hours a day. When the bag empties, you add a fresh one. You carry it around in a fanny pack.
I did my hyperbaric oxygen while on the continous infusion IV plus flagyl and Bicillin and treatment for co-infections.
The hyperbaric treatments I did were the ones featured on the Today show, the monoplace chambers...or "glass coffins" as Brooke put it. They are the best, and that combination has worked the best for me.
Anyone struggling with chronic Lyme who can afford it should try monoplace hyperbaric treatment for 30-60 days along with IV antibiotics. It made enormous improvements for me, and I did 125 treatments and 9 months of IV before getting sepsis...and then getting sepsis again. After that I was too high risk for more IV and have remained on oral antibiotics.
The Today show was great today!
Thank you to everyone involved.
Please write to NBC and thank them for their time and respect.
This is very important.
WildCondor
------------------
Lyme Disease Help
http://www.wildcondor.com
I was able to tape all but the very beginning and showed it to my husband. He has always been very supportive (he is actually giving me my bicillan shots now!), but remains pretty uninformed by choice., So he was impressed to see Dr. Burrascano, and hear what I have said reinforced.
Many thanks to NBC (I have emailed them) and to Brooke!!
Ann
I sure hope she remains okay and in good health.
I was commenting to a few friends that it is amazing, these type of incidents have been in People (the young guy diagnosed with ALS, on a feeding tube, and it turns out to be lyme, and after 14 months of antibiotics he was on the road to recovery); Newsweek (the kid with a 2-year headache, they even mentioned IVIG via Katz); now Katie Couric.
Yet the doctors are still being investigated...their licenses being threatened...mainstream medicine still shrugs it off...the CDC is lax about reporting...here it is, right out there on mainstream media, isn't the profession listening, isn't the CDC listening?
It is bizarre and barbaric.
Profile: One woman battles Lyme disease and insurance companies 01
December 2004 NBC News: Today , National Broadcasting Company, Inc. All
Rights
Reserved.
KATIE COURIC, co-host: Today, more of our series, AGAINST THE ODDS,
Americans who overcome powerful challenges. Today national correspondent
Melissa
Stark has yet another inspirational story. Hi, Melissa. Good morning.
MELISSA STARK reporting: Hi, Katie. This one reveals how little is
actually known about Lyme disease. Each year doctors estimate that there
are some
26,000 new cases of Lyme disease diagnosed. However, only 60 percent of
sufferers even realize they have it. Brooke Landau battled the disease for
seven
years before she found a cure. Brooke Landau was on her way to achieving
the
American dream. A recent college graduate, she was working for a fortune
500
company in New York City. Then one day, she woke up unable to move.
Ms. BROOKE LANDAU: I started yelling for my parents and they saw something
was severely wrong.
STARK: Her parents rushed Brooke to the emergency room. Doctors were
baffled.
Ms. DIANE LANDAU (Brooke's Mom): As a parent, it was horrible. They did a
spinal tap, her first of seven spinal taps, and they determined that it was
likely that she had Lyme disease.
STARK: Lyme disease is well-publicized, but poorly understood. The infected
person is bitten by a small deer tick, roughly the size of a poppy seed.
Dr.
Joseph Burascano is one of the country's leading Lyme physicians.
Dr. JOSEPH BURASCANO: Lyme is the fastest-growing infectious disease in
this
country. First of all, you have to think of Lyme as two different
illnesses.
The first type you think of is the more common, early Lyme disease, which
may or may not present with a rash. Lyme disease in the chronic form can
mimic
many other illnesses. That's the problem. That's why diagnosing chronic
Lyme
is difficult.
STARK: Most insurance companies only recognize a positive blood test as
proof of Lyme disease. So despite her positive spinal tap, it was seven
years
before she was officially diagnosed. Dr. Burascano estimates blood tests
are
accurate only 50 to 70 percent of the time. And your blood test was
negative?
Ms. B. LANDAU: For seven and a half years, I have never had a positive
blood
test.
STARK: As a result, Brooke's insurance company refused to pay for her
treatment. With doctors prescribing medications and running tests, her
legal bill
began to mount. How much did you battle with the insurance company?
Ms. B. LANDAU: Oh, every day, all the time. The first year of my illness, I
spent $40,000 out of my own pocket.
STARK: That you never got back?
Ms. B. LANDAU: Never got back. And that was just the first year. I mean,
this has been hundreds of thousands of dollars. You kind of throw your
hands in
the air and just sort of give up. And you just keep paying and paying and
paying.
STARK: How frustrating was that?
Ms. B. LANDAU: That was the worst part. Because you're stuck with zero
insurance, a disease that people--the medical community and insurance
companies
won't even recognize as necessarily legitimate.
STARK: Brooke decided to be pro-active. In an attempt to relieve her
chronic
joint pain, doctors suggested she move to a warm climate. Brooke chose
Miami, and began to research alternative methods of treatment.
Ms. B. LANDAU: I had no quality of life. None. I was lying in bed day
after
day after day with home-care nurses coming to tend to my needs. And I was
27
years old.
Ms. D. LANDAU: It just had this devastating effect, I mean, for years and
years. She hardly smiled. And we would go to family events and Brooke would
be
in another room just holding her head in her hands.
STARK: Brook finally found a doctor who thought he could help her. The
treatment was risky, so risky that the doctor who provided it is currently
fighting to keep his medical license, and asked us not to mention his name.
Ms. B. LANDAU: This treatment was not FDA approved, not covered by
insurance. They put a tube into my heart, and it pumped the antibiotics
directly into
my heart, and had me then get into a hyperbaric oxygen chamber for 30 days.
STARK: How scary was the thought of that?
Ms. B. LANDAU: They said to us that it could kill me, and it clearly could.
You get one infection into your heart, and you're done.
STARK: Despite the risks, Brooke elected to go forward.
Ms. D. LANDAU: I went down there, and I was just so devastated. She was so
networked into the medical community and, the sick community, that it was
just
horrible to see. I mean, she was living the life of an 80-year-old.
STARK: At first it didn't seem to be working.
Ms. D. LANDAU: It was supposed to be a 30-day course of treatment. For 29
days it did nothing.
Ms. B. LANDAU: On that 30th day, I got out of the hyperbaric chamber, and
my vision stabilized, my hearing came back, the joint pain, gone. The
muscle
burning, gone. I went to bed that night for the first time without burning
in
my body.
STARK: With her Lyme disease gone, Brooke decided to pursue a career in
modeling and broadcasting. She moved to Los Angeles, but one of her
symptoms,
painful, chronic headaches continued. At the worst point, how much
medication
were you on?
Ms. B. LANDAU: I was taking 27 pills every day. They didn't know how to get
me off all of this medication.
STARK: Dr. Steven Graf-Radford, the head of Cedar Sinai's pain center, is
now Brooke's doctor.
Dr. STEVEN GRAF-RADFORD (Brooke's Physician): You're on a list of
medications this long, OK? These medications are causing your problem. They
just want
to run away immediately. And that's the hard part.
STARK: With his help, Brooke began to lessen her doses. How many pills a
day
to do you take now?
Ms. B. LANDAU: As of yesterday, just one. So in one month I should be off
of
everything forever.
STARK: Did you feel cured at that point?
Ms. B. LANDAU: I am cured in the sense that the Lyme disease is gone. It's
out of my system.
STARK: Brook has begun getting her life back, and is now working for ESPN.
Ms. D. LANDAU: This is really is the first time that--that the old Brooke
is back. I mean, she laughs and she jokes and she's having fun. And she
just
kept fighting to get that life back.
STARK: In addition to returning to work, Brooke has also become an advocate
for health care reform in regards to the treatment of Lyme patients. But as
you can see, it can just be devastating.
COURIC: She went through so much. And I guess a lot of people are
experiencing this, right?
STARK: It is the fastest-growing infectious disease, believe it or not, in
the US.
COURIC: Wow. All right, Melissa Stark. Thanks so much, Melissa. And we'll
be back in a moment. This is TODAY on NBC.
