Someone from a Missouri television station called me the other night.
They were trying to help someone who called them about trying to find some help with their lyme disease.
The person who called them lives in the area the support group I lead serves, which is why I was contacted.
They've asked me to forward to them, via email, any lyme disease information I feel is important for people to know about, thus worthy of them doing a report.
While I'm at it, I intend to forward the same information to my local television stations and newspapers.
I've never done this before, so I could really use the help of those of you who have or at least, those of you who know something about it.
Besides the recent IDSA findings, new documentary, and Pam's book, what else do you think is important for me to give to them?
Rather than simply mention the information, please provide me with a link to it, if possible, so I don't have to go blindly searching for it.
If it's in some other format, just let me know, and we'll work something out.
Please give me your thoughts about the information, as soon as possible!
As always, your help is greatly appreciated!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
I would like to tell my story about having a tick taken off of me doring surgery. the doctor never tested it. I have tried to go after this hospital and dr. but no lawyer would touch it. I think the dr. aswell as the hospital should be taught more then just what a bulls eye is. If they had tested that tick and my gyn and family dr. beleived in lymes I could have been treated early. Just trying to make a difference!
-------------------- Except the ones you love,be sure that you are also being excepted!!!! Posts: 16 | From Elkton,MD. | Registered: Feb 2008
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
Sorry, I will respond more fully later, but you might start with searching "Blumenthal" for his investigation and agreement with the IDSA, and "Savely" for a good article on the controversy and the two standards of care.
Regards,
Sharon
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
For Newspaper:
Some very informative articles and mentioning people like Amy Tan and Daryl Hall gives validity to our diseases:
Please watch this eye-opening video regarding Lyme Disease promoting a documentary called 'Under Our Skin' that is being screened and viewed country-wide since May of 2008.
posted
Many thanks to those of you who replied to my thread with some really good suggestions!
Does anyone else have anything to add?
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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bettyg
Unregistered
posted
buried at end of page...anyone else have other links?
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have tons of info on my site, make sure to click on each link, even the forum link because there is a section called "Everything you need to know about tick borne disease" with about 100 articles. www.truthaboutlymedisease.com Also www.wildcondor.com has a ton of info too as you probably know.
Thank you very much for the helpful information about and link to your website!
As well, the good reminder about and link to Wild Condor's website!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Can you refer them to the educational arm of the Lyme Disease Association and ILADS. They way they will get the top expert quotes and all speaking from the same voice, so to speak.
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
This article was the cover story of people in 2003 which would be a really credible resource.
People Magazine
June 16, 2003 Vol. 59 No. 23
Hidden Plague. Forget about SARS. Lyme disease is spreading steadily, and some experts say it can elude the standard cure.
J.D. Heyman Joanne Fowler in Frederick
For months no one knew what was happening to Tom Coffey. In the spring of 2001 the then 34-year-old radio dispatcher was struck by high blood pressure and double vision. By summer's end he was suffering from facial palsy, crushing fatigue and joint pain so intense he walked with an old man's shuffle. Medical visits turned up nothing. By October his weight had plummeted 105 lbs., to 202. "My doctor was at the end of his rope," says Coffey. "He kept referring me to different people."
When he awoke unable to swallow his saliva, Coffey rushed to a hospital near his Frederick, Md., home and was given blood tests and brain scans. Doctors returned with a terrifying diagnosis: ALS, or Lou Gehrig's disease, a degenerative illness likely to kill him within six months. "Tom's dad said, 'I always thought he'd be burying me. Now I'll be burying him,'" says Coffey's wife, Tricia, 35.
Hooked to a feeding tube, Coffey waited to die. But a relative who thought his symptoms might have another cause suggested a trip to Dr. Greg Bach, a suburban Philadelphia Lyme disease specialist. The doctor found something everyone else had missed--a "bulls-eye" rash beneath his patient's hair. Coffey was suffering not from ALS but from a severe case of Lyme, which is spread to humans by tick bites. For most people, Lyme manifests in a rash and flulike symptoms easily treated with antibiotics. Left undiagnosed, however, it can invade the nervous system. "I always thought Lyme was no big deal," says Coffey, who rebounded after taking medication. "But it damn near killed me."
In fact Lyme is rarely fatal, but as Americans head outdoors during the peak infection months of May to July, experts warn that it can be devastating--and that the threat is growing. In the past decade the disease has spread from the Northeast to every state except Montana. Last year the Centers for Disease Control reported 17,000 cases--more than double the number in 1990--but researchers like Joseph Piesman of the CDC say the actual incidence may be about 10 times higher.
The illness is also the subject of a growing debate. While most doctors believe that Borrelia burgdorferi, the tick-borne spirochete that causes Lyme, is quickly killed by medication, many patients complain of arthritis, irregular heartbeat, memory loss and motor- skill problems long after they have undergone the standard two-to- four-week treatment regimen. That has led some researchers to conclude that Lyme can return as a chronic illness in perhaps 10 percent of those thought to be cured. "Lyme is much more serious than the public recognizes," says Dr. Brian Fallon, director of Columbia University's Lyme Disease Research Center. "People can have severe cognitive problems for the rest of their lives." The medical establishment, however, remains unconvinced, and a few doctors have been penalized for their treatment of recurrent Lyme. Pat Smith, head of the Lyme Disease Association, a nonprofit group calling for greater research on the disease, thinks pressure not to recognize the chronic form comes from insurance companies: "They don't want to pay."
No one disputes that late-stage Lyme is little understood. Tests are often effective only in early-stage infection, and while sufferers usually get a rash, they don't always notice it. Worse, many Lyme symptoms mimic other diseases: fibromyalgia, multiple sclerosis, even mental illness. That means other diseases may be mistakenly treated as Lyme--the crux of mainstream objections to the chronic-disease theory. "People who test negatively for Lyme are still being given antibiotics to see what happens," says Dr. Gary Wormser, head of infectious diseases at New York Medical College.
But Fallon argues that a longer course of medication, given intravenously, may be needed for some patients. Coffey's doctor agrees. "Half the patients I see have been inadequately treated," says Bach. "These people thought they were cured by being treated only a little."
Coffey, now 37, is taking no chances: He has remained on antibiotics for 14 months to be sure that his Lyme is really gone. Still, he's grateful to have escaped his death sentence. "I'm starting over again," he says. "From here on out, the rest is gravy."
Copyright � 2002 Time Inc
Posts: 982 | From Florida | Registered: Feb 2002
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-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
Glad my other article could help. Here's another one that was somewhat controversial. Wonder how that could happen with lyme!
I blanked out the doctor's name as he is my dr. and I was told he never spoke to the press. They took comments, maybe from the family? and used them as quotes. Either way, if you need the link, send me a PM.
I know Wyatt's Mom, she came to our local meetings, drugs were NOT the cause of his psychosis. Only on this board can I say that and know people will nod their heads in understanding.
THis article is from the Associated Press.
TALLAHASSEE, Fla. -- Wyatt Sexton, the Florida State quarterback who was found disheveled and disoriented on a city street last month, has been diagnosed with Lyme disease and will miss the upcoming season, the university reported Saturday.
Florida State coach Bobby Bowden said the university would seek a sixth year of eligibility for Sexton, who has already used his redshirt season. He is the Seminoles' only experienced quarterback.
"It looks like Wyatt will need several months of treatment and will have to miss the season," Bowden said in a statement.
A specialist in the field of Lyme disease, Dr. (BLANK) from (BLANK), Pa., said Sexton's organs have been infected and recommended intensive antibiotic therapy over a period of months.
"Wyatt has active Lyme Disease that has resulted in neuropsychiatric and cardiovascular deficits," Dr. (BLANK) said.
The disease is curable, but the estimated recovery time for his advanced stage of infection is several months. If untreated, the disease can cause joint swelling and brain inflammation.
"We expect him to fully recover," Sexton's parents, Billy and Joy, said in a statement in the school's release. Billy Sexton is the running backs coach for the Seminoles.
The Seminoles will now choose between a pair of redshirt freshmen, Drew Weatherford and Xavier Lee, as the starting quarterback for their nationally televised season opener Sept. 5 against Miami. The team begins its preseason practice Aug. 9.
"It may come down to flipping a coin as to who starts the season," Bowden said.
Wyatt Sexton was the projected starter at quarterback. He played in 10 games in 2004, completing 55.2 percent of his passes for 1,661 yards and eight touchdowns. He also had eight interceptions.
On June 14, the 20-year-old Sexton was doused by pepper spray and taken to a hospital after he was found lying in the street and identifying himself as God. His parents released a statement two days later that said drug abuse was not the problem.
Lyme disease bacteria are transmitted to humans by ticks that are carried by deer.
The disease is often identified by an expanding "bull's-eye" rash that develops days to weeks after a tick bite. Other symptoms include tiredness, fever, muscle aches and joint pain.
The Centers for Disease Control and Prevention in Atlanta said there are an increasing number of cases that are attributed to growing populations of deer that support deer ticks, more homes being built in wooded areas and better recognition and reporting of the disease, named in 1977 when a cluster was identified in Lyme, Conn.
In addition to Sexton, the Seminoles could also be without their two linebackers, Ernie Sims and A.J. Nicholson, for the Miami game because of recent run-ins with the law.
Florida State was 9-3 in 2004, but failed to win the Atlantic Coast Conference title for just the second time in 13 seasons, and wound up ranked 15th -- its fourth straight year outside the Top 10 in the final Associated Press poll.
Copyright 2005 by The Associated Press
Posts: 982 | From Florida | Registered: Feb 2002
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Controversy and lyme seems to go hand-in-hand thesedays, for sure!
That's okay you blanked out your doctor's name, as I understand.
The way you said the press used comments sure doesn't sound right to me!
I think what you've copied and pasted here, about the article, is suitable, but if I find out later I need the link, then I'll send you a private message.
Thanks for offering to help me with that, if needed!
I understand what you're saying about drugs not being the cause of his psychosis and I'm sure many others here do too, like you said.
I remember reading the article, right after it was published, and actually recall how shocked, yet sad, it made me feel.
I'm just glad lyme was recognized as the root cause of his problem, indeed!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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