Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
EDIT- Before you read this thread be sure to note it was started in 2006. Eleven years ago!
Starts here...
HOLY COW NEWSPAPER LOVERS!
While in town today.. someone asked if I had seen the Lyme letters in today's paper (Star Democrat, Easton, Maryland)? I hadn't yet.
I thought maybe one.. possibly two of your letters MIGHT have made it to print.. but was I surprised to see..
1/2 of a full newspaper page was devoted to YOUR letters!!! And this is the day before ELECTIONS!!!
There was a whole section devoted to NOTHING but YOUR letters! I went to the store and copied it.. and will be taking the copy to the polls tomorrow as handouts!
There were letters from (not naming names to protect privacy)... Florida, Iowa (yes you BettyG!), 2 from Maryland, California, Michigan, and even Pat Smiths letter was there!
They even drew a picture of a tick and put it in with all the letters!
The titles they gave the individual letters you all wrote:
Lyme Disease Suffers Speak Out
Lyme Disease Can Have Tragic Results
It Takes Just One Bite To Be Affected
Lyme Patients React to New Guidelines
IDSA Guidelines Upsetting
Lyme Disease Reports Appreciated
Patients Face Doubt, Uncertain Treatment
```````````````````````````````````````````
YOU ALL ARE FANTAS-TIC! Thank you so much! We WILL make a difference!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey 5...
There is a link.. but you need a subscription to get to it... and that costs money. I have asked a friend to help out and if she responds to the request and is able.. we will get it up here for you.
I tried to re-new the newspaper subscription today.. but was told I was in the wrong office! Oh well... I'll have to wait.
[EDIT- No.. it is not Gary's article from the Courant in Hartford, CT I am discussing here. This was in a Maryland newspaper... or several actually. One is the Star Democrat.. and another one is the Record Observer.]
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Jellybelly
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Member # 7142
posted
This is fantastic!!!!! Posts: 1251 | From california | Registered: Apr 2005
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Jill E.
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Member # 9121
posted
Bravo to all the letter writers!
I am printing these letters out to keep in my files as I continue to try to spread the word here in my city and get the media's attention.
There are many excellent and compelling points made in these letters that will remind all of us what needs to be said on the local as well as national level.
Jill (from yet another city where there is no Lyme Disease - yet someone forgot to tell the ticks that bit me and my family)
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
LYME LETTERS Chronic Lyme Sufferers, Others, React To Article September 24, 2006 These were published some time ago in the Hartford Courant.
I think TC might be talking about the article that was published in the Newark paper?
posted
Wow, Dilly! Thanks for the link! Those were GREAT replies!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
No.. sorry.. it wasn't Gary's article in the Courant.
The letters were in response to the article in the Star Democrat (Easton, MD).
The article was subsequently published in several other Maryland papers... including the Record Observer.. which also added a color picture of spirochetes coming out of a cyst form... and another article I sent them about what the new IDSA guidelines actually mean to patients and doctors.
Here is the original article from the Easton paper..
Lyme disease groups upset by new guidelines
Infectious disease group says only `bulls-eye rash' good for clinical diagnosis
By STEVE NERY Staff Writer October 31, 2006
CENTREVILLE -- While National Lyme disease patient advocates are protesting the Infectious Disease Society of America's new diagnostic and treatment guidelines, a group of Maryland advocates recently resigned from a state Lyme disease subcommittee largely because of the state's support for the new strict guidelines.
The Infectious Disease Society of America's (IDSA) new guidelines were published online earlier this month after being approved in late August. Many Lyme advocates had objected to the IDSA's previous guidelines for being too strict and outdated, and are even less happy with the new set.
While erythema migrans, or the ``bullseye rash'' that appears on some patients, is enough for a clinical diagnosis, according to the new IDSA guidelines, nothing else is. The IDSA recommends blood testing, which has been found unreliable by many studies, while the Centers for Disease Control had been recommending clinical diagnosis.
Lyme disease is caused by the bacteria Borrelia burgdorferi, transmitted through tick bites. Less than half of all infected people recall the tick bite, according to the International Lyme and Associated Diseases Society (ILADS), and more than half never develop the bullseye rash.
ILADS President Dr. Raphael Stricker wrote a letter to Dr. Sherwood Gorbach, editor of ``Clinical Infectious Diseases,'' which also published the IDSA guidelines, demanding a retraction of the article. Stricker wrote that the guidelines were written by a biased, one-sided group and threaten to harm patients and patient care, according to U.S. Newswire.
Pat Smith, president of the Lyme Disease Association (LDA), also issued a ``call to action'' for people affected by the disease. ``Effectively banning clinical discretion and classes of drugs, alternative treatments and even supplements for any manifestation of Lyme'' is reprehensible, Smith wrote in a letter to Lyme groups across the nation.
The LDA started a petition in protest, available on the group's Web site at
The new guidelines ``take the place of a long-standing policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease,'' the petition reads.
In Maryland, four patient advocates resigned from the Department of Health and Mental Hygiene Lyme Disease Advisory Subcommittee in mid-October. Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland, said she was initially hopeful about the role patient advocates might play on the subcommittee, which met three times beginning in October 2005.
``We went in there with big hopes that we could educate and make a difference for people with Lyme, but right from the beginning, it didn't look promising,'' Barnes said.
``We're not quitting because we're mad,'' she added. ``We're quitting because it's a brick wall in front of us.''
Barnes said she and other advocates hoped to get the state to support more ``patient-friendly diagnostics.''
Johns Hopkins University published a study last fall rating conventional Lyme disease testing methods -- especially the common two-tiered blood test -- as ``unreliable,'' one of many studies questioning the accuracy of traditional diagnostic methods. Ironically, Hopkins has been criticized by Lyme groups for failing to adequately address the disease itself.
``Although the laboratory testing for diagnosis of Lyme disease is improving, the degree of sensitivity needed for a high level of assurance at the time of early Lyme disease is still not obtainable, even through combinations of various laboratory tests,'' the Hopkins report concluded. ``Thus, clinical suspicion based upon well-recognized cardinal features of Lyme disease is still the most appropriate approach.''
Barnes said there are better testing methods and treatment guidelines out there. IGeneX, a California testing lab, has developed alternative tests, while ILADS has diagnostic and treatment guidelines online at www.ilads.org.
Nearly 500 people showed up at Chesapeake College earlier this year when ILADS guidelines author Dr. Joseph Burrascano Jr. spoke at a Lyme disease symposium.
``It's like using leeches instead of modern lab equipment to draw blood,'' Barnes said of the IDSA guidelines, adding she believes it will set them back 20 years.
There's no money going to fight the disease, she added.
``A handful of chronically ill people can't do it alone,'' she said.
Barnes said she is hopeful legislators will take steps to fight a growing regional problem. Lyme disease advocates have received support from some local politicians, including U.S. Rep. Wayne T. Gilchrest, R-Md.-1st.
Barnes said different people, including a man from an insurance company, showed up to the three DHMH subcommittee meetings. Other members included DHMH workers and veterinarian staff workers. Two of the four Lyme disease patient advocates were allowed to attend each subcommittee meeting.
Barnes said she continues to get several calls a day from people looking to get treated and people who haven't been cured. She has spoken to people who have been denied treatment based on the new IDSA guidelines, she noted.
According to the IDSA, a doctor can administer a single dose of doxycycline after a tick bite as a preventative measure if the doctor can identify the tick as a certain species, if it is within 72 hours of tick removal and if the rate of Lyme infection among ticks in the area is higher than 20 percent.
Barnes said one pill is not enough for prevention, and questioned how many doctors can accurately identify ticks. She also said she believes the IDSA recommends doxycycline rather than other more effective drugs because it is much less expensive.
The IDSA guidelines also state that a few weeks of antibiotics produces a highly favorable outcome, and urges doctors not to administer alternative treatments, while Lyme support groups favor treatments on a case-by-case basis.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
awesome news about the letters being published
and powerful
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
Thanks Tincup! I was published; makes the extra effort worth it knowing it affected someone's judgement in publishing it. Here's what I initially sent to THIS paper.
"Thank you Steve Nery for your accurate article about LYME DISEASE and what has been happening lately!
"According to the IDSA, a doctor can administer a single dose of doxycycline after a tick bite as a preventative measure if the doctor can identify the tick as a certain species, if it is within 72 hours of tick removal and if the rate of Lyme infection among ticks in the area is higher than 20 percent".
I've had chronic lyme for 36 years; 34 years MISDIAGNOSED, and 2 years in long-term antiobiotic treatment.
A SINGLE dose would do NOTHING for me! I'd just be closer to my death bed.
I got really sick Feb. 1970; they called it mononucleosis; now EPSTEIN BARR VIRUS.
It was lyme disease! How could a tick have bitten me in late Jan./early Feb? It had to have come into our home by a LIVE Christmas tree, which are loaded with ticks!
Please use care this holiday season with your live trees! Spread those white sheets out to catch and get rid of ALL TICKS from the tree so you don't end up like me ok! CHECK FOR TICKS!"
I was really pleased with my 192 words for the 200 limit as you all know how gabby I get when I'm wound up! lol ''
I'll be looking forward to reading ALL published letter from us lymies! Again, TC, thanks for the TC; can't wait to hear how tomorrow goes with you set up outside your voting precinct! Bettyg
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sometimesdilly
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Member # 9982
posted
Whoops!
Sorry--found the "wrong" batch of great letter!
But it gives me an idea.
When I'm done with poll watcher-work for election day (VOTE!!!!!) I'll cut and paste the Courant letters and start a thread for the purpose of consolidating in one place all the guidelines-related letters that get published anywhere they can be found.
And somewhere else AliG had the great idea of coming up with a phone script for contacting legislators,in case anyone needed help with coming up with words.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
Dilly, great idea of copying all the letters and having a special place for them and add them to TREEPATROL'S NEWBIE LINKS...archives!
AliG, love your idea about a phone script as well! Good thinking ladies.
Dilly, I thought about being a poll watcher; but I know too many people and would be a poll TALKER!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Found this post doing a Google search on a Lyme related topic. How sweet it was! And it made me laugh too!
Anyone remember Treepatrols Newbie Links? I sure do miss Tree!
And look how many letters were published from patients! All at one time. That has to be a record breaker!
Amazing times those were.
Wish patients would continue flooding the papers with letters. It really, really helped to educate folks back then and still can.
posted
Yes, I do remember Tree's wonderful newbie links!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Im still alive barely hahaa ill check around see if can find those links pretty busy right now though and Hi everyone!!! and no not to good babesia second time this one dang near took me incredibly fast 5 weeks couldn't breath love yins
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Heres the newbie links TC tincup hyugs took me lil longer found em
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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