posted
- I left the comment below on the reporters blog:
Thank you for your article. I am one of the unfortunate Lyme patients who weren't treated promptly. I've been in a
wheelchair for a year even though I received 4 weeks of IV antibiotics last summer and was pronounced cured.
Recently I started getting sicker and just tested positive again. My life may never return to normal.
``Under Our Skin'' is a very good movie. It covers the many facets of Lyme, and the schism between the IDSA
guidelines and reality. I have recommended it to everyone I know.
Geri -
Posts: 151 | From Kingston NY | Registered: Nov 2008
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bettyg
Unregistered
posted
copying both articles here so we can have email address to send our feedback!
1st article outstanding and breaking it up for neuros like me to comprehend betty
ps...there is a nice photo of the 3 of lyme patients!! ***********************************************************
Film shows Lyme disease victims' fight
Showing today is part of local effort to place a spotlight on tick dangers
By DENNIS YUSKO, Staff writer First published in print: Wednesday, June 24, 2009
SARATOGA SPRINGS -- Linda McAllister didn't just like hiking. She was passionate about it, and had backpacked through the Grand Canyon and several national parks.
"That was my life, the outdoors," the Saratoga Springs woman said.
Until she was struck down by Lyme disease about 18 years ago. Then her bed became her home.
Now 55, McAllister still is fighting the effects from an infected deer tick bite she didn't see or feel. The once-active teacher suffered from exhaustion, darting pains, fevers and vision loss, and weight loss turned her into "skin and bones."
But McAllister never got the "bull's eye" skin rash that can accompany the onset of the illness, and that made her problems hard to diagnose.
For answers, she went to medical specialists, hospitals, even the Mayo Clinic. She was told she had anxiety, fibromyalgia and other conditions.
One day, her friend suggested she had Lyme disease. A test returned positive.
"I promised myself that if I could, I would tell people how horrible this disease is," she said a recent interview on Broadway.
McAllister is part of a grass roots movement of patients who are working to redefine Lyme disease as an illness that isn't always easy to detect or treat, and can contain multiple infections, depending on the tick that bites.
The group has found a rallying point in the documentary film "Under our Skin" debuting today in Albany.
The 104-minute movie, which will be shown at 6:45 p.m. at the Spectrum 8 Theaters, follows the suffering of those infected and their treatments.
It shows that a growing number of long-term Lyme disease patients can have difficulty getting diagnosed and treated because of outdated guidelines set by the Infectious Disease Society and decisions made by doctors and health insurance companies.
McAllister recently started seeing a "Lyme-literate doctor" who is providing her prolonged, intravenous antibiotic regiments.
The shots have helped her, but she's paying out of pocket, and estimates having spent almost $250,000 on health care since becoming sick.
A handful of doctors in the state are putting their careers on the line by providing the extensive antibiotic treatments, which insurance companies discourage because it costs so much, McAllister said.
The film's release comes as Lyme disease continues to spread across the country and state.
About 300,000 people have been infected with the bacterial infection since it was first reported in 1986, including 82,000 in New York, according to the Centers for Disease Control and Prevention and the state.
Deer tick surveys show increased numbers in the southern Adirondacks and Central and Western regions of the state, where few previously had been found. Scientists say mild winters allow ticks to survive.
Mike and Elizabeth Phillips of Saratoga Springs and two of their dogs all have been diagnosed in the last five years. She never saw the tick or had a rash. He did, on his lower back.
She now needs 18-24 months of heavy doses of antibiotics. He took 21 days of medication last year, and when that didn't help, was issued another 30 days of pills.
Seeing "Under Our Skin" made the couple realize that "we had to start fighting for our health right away and not wait for the medical system."
Sigmund Kwiatkowski, 62, of Wilton got Lyme disease two years ago.
After continuous shots of antibiotics failed to eradicate his infection, Lyme expert Dr. Steven Bock of Rhinebeck told him that the tick that had bitten him was carrying three co-infections of the disease, and required heavier treatments. Bock will answer questions after the movie tonight.
Dennis Yusko can be reached at 454-5353 or by e-mail at [email protected]. *******************************************
Lyme disease facts
The number of Lyme disease cases in the Capital Region in 2008:
Sigmund Kwiatkowski, left, Barbara Floryshak, center, and Linda McAllister, right, who all suffer from Lyme disease, sit at Congress Park in Saratoga Springs.
The three, along with Cindy Barton, have started the Saratoga Springs Lyme Disease Association.
(Paul Buckowski / Times Union) Two summers ago, I fell ill with Lyme disease, and after doing some reporting for this story that ran today, I realize that I was lucky to have caught and treated it right away with weeks of antibiotics.
I had this persistant rash/itch on the side of my thigh and was growing really tired at work by like 1 p.m. I realized something was wrong when I left work one day soaked in sweat, and I experienced delirious visions while trying to take a nap.
The rash soon turned into the dreaded bull's eye. I knew it was Lyme, and thankfully I had the resources to deal with it.
This year, I am hearing many instances of people diagnosed with Lyme disease.
My inbox this morning contained three personal emails by 9 a.m. from people with horrible stories. It's important to be educated about ticks and the diseases they carry.
Remember: Young kids love to play outside.
Here's a YouTube trailer for the movie Under Our Skin that I refer to in the story. The entire movie plays in Albany today and Thursday.
1. It's just an awful illness. I've known a number of people with it going back over twenty years when they couldn't even diagnose it.
They have never been able to get rid of it. I'm surprised that the medical world doesn't take this more seriously.
I have even had a pet with it and it ruined the dogs life even with the treatments.
I'll tell you...personally I stay away from places that I could come in contact with a tick...and so far I have been lucky as they are really all over the place. It really taes the fun out of camping and other outdoor activites whe you have this hanging over your head.
Comment by Marty -- June 24th, 2009 @ 10:27 am
2. Thank you for your article and thank you for those that shared their stories. It is a horrible illness. I know two people this year who came down with it. I think we need to live life but be aware of the issue. Prevention and doing tick checks help.
Comment by BenfromSchuylerville -- June 24th, 2009 @ 12:23 pm
3. Thank you for your article. I am one of the unfortunate Lyme patients who weren't treated promptly. I've been in a wheelchair for a year even though I received 4 weeks of IV antibiotics last summer and was pronounced cured. Recently I started getting sicker and just tested positive again. My life may never return to normal.
``Under Our Skin'' is a very good movie. It covers the many facets of Lyme, and the schism between the IDSA guidelines and reality. I have recommended it to everyone I know.
Comment by Geri Tresvik -- June 24th, 2009 @ 1:25 pm
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bettyg
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here's what i just posted awaitng their approval ....
4. Dennis,
WELL DONE on your 2 lyme disease articles involved the 3 lyme patients lives!
It was a really nice photo of the 3 of them and their intriguing stories you presented in a nice way.
I've had chronic lyme disease for 39.5 years; 34.5 years MISDIAGNOSED by 40-50 DOCTORS!! UNACCEPTABLE!!
Yes, Dennis, you were very lucky/fortunate and someone was looking down from above for you!
ALL 50 STATES HAVE LYME DISEASE AND CO-INFECTIONS! Check out your state's numbers! The last 2 years are NOT accurate for many states; we don't know why!
1980 - Jan. 2008 ...all 50 states broken down by years by CDC!
Below is the latest 2008 ILADS, International Lyme Associated Disease Society's lyme treatment guidelines which our CHRONIC lyme literate mds use to treat us!
PLEASE go to UNDER OUR SKIN LYME DISEASE DOCUMENTARY explaining what we MISDIAGNOSED and NOT TREATED PROMPTLY AND LONG ENOUGH lyme and co-infection patients go thru.
Plus our paying OUT OF POCKET for all our lyme expenses!! Some folks are LUCKY; the rest of us are NOT even though we pay an arm and a leg for good insurance like BC/BS!
It tells of the politicaly lyme war we patients did NOT want to be exposed to; let more FIGHT for our lives to get treatment, and trying to get our health insurnace companies to pay THEIR FAIR SHARE like patients with cancer, AIDS/HIV!! We are DISCRIMATED AGAINST!
All we want is to get into REMISSION AND QUALITY OF LIFE again to go on with "normalacy" whatever that is!
SUPPORT your loves ones, friends, co-workers, and anyone you know that has lyme disease! Be there to really understand what they are going thru after attending the UNDER OUR SKIN showing in your city!!
Thank you for helping us to get the much needed SUPPORT vs. what we've been exposed to all these years and DECADES, "IT'S ALL IN YOUR HEAD"!!
ATTEND NOW! Make a difference so this wonderful documentary can on to small town cities with theaters! Thank you.
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-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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bettyg
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another fabulous comment left there ....OUTSTANDING! xox
#5
Thank you for printing such an insightful and wonderful article. I have seen the movie ``Under Our Skin'' and I can't recommend it enough.
You might also want to read ``Cure Unknown'' written by Pamela Weintraub.
This disease is spreading rapidly and the numbers that are reported in your article only tell one tenth of the story. The CDC claims that Lyme is probably underported by as much as ten times. (so those county's you mentioned actually are ten times greater)
Currently there are approximately 20,000 cases of Lyme reported per year in the US, so that would mean that roughly two hundred thousand people are infected with Lyme annually.(some doctors believe the number may even be greater)
I have heard that the small town of Cambridge NY which is in Washington county had unbelievable numbers of reported and unreported cases last year and there are only about three thousand people in that town.
I used to live in upstate NY and have had Lyme for approximatley 16 yrs. I did not get a diagnosis until about 1 1/2 yrs ago.
Everyone should tell their story and see this wonderful movie. Share it with your doctors and nurses and especially your family.
Many people that are diagnosed with MS,FM, CFS, Alzheimers, Parkinsons Disease etc...go on to find out that they have Lyme Disease. It's important to know what is causing these other sicknesses and in many cases they are caused by Lyme.
Again, thank you for publishing this article.
Comment by LibbyisTicked -- June 25th, 2009 @ 2:39 am
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