lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I submitted an article called a "Guest Viewpoint" in my local paper and they published it!
It's titled "The Lasting Pain of Lyme Disease". It can be found on today's (Tues. April 29th) pressconnects.com. It's listed under the Viewpoints at the top right of the page.
I'm sorry but I'm not technically savvy and don't know how to link. If anyone knows how and would like to, I thank you!
Of course, some of the comments haven't been too nice, but I expected that. In the anonymous world of cyberspace a lot of people think it's okay to be mean and rude.
I'll try not to cry about it. I've done enough of that in the past five years!!
Take care, Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
GREAT artical llny, I only saw 1 responce did they take others down ? , Doc
Posts: 95 | From nys | Registered: Jan 2008
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bettyg
Unregistered
posted
OUTSTANDING ARTICLE!!!
Guest Viewpoint: The lasting pain of Lyme disease
By Julie Antenucci * April 29, 2008
You hear about Lyme disease and ways to avoid it every spring. The Infectious Disease Society of America claims it's easy to cure with three to four weeks of antibiotics.
They say it's a flu-like illness that may leave a person with some arthritis. If this is the case, then why should we care? Because there is far more to the illness than the general public realizes.
Lyme disease is endemic throughout the Northeast, upper Midwest and parts of California.
It is the fastest-growing infectious disease in the United States after AIDS.
For many people, the disease becomes a chronic affliction that steals the ability to work, play or enjoy life.
Support groups abound throughout the country because it is so misunderstood.
The symptoms are bizarre and vary in severity from person to person. Lab tests come back normal and negative for the majority of victims.
Many doctors are unaware that the tests for Lyme disease are inaccurate and should not be used to diagnose.
What is it like to have chronic Lyme disease unrelieved by antibiotic or other treatment? It affects every aspect of life.
Since it is often a brain infection, a victim may suffer memory loss and personality change. Some people lose the ability to talk, see or hear. Some can't swallow or eat.
Many experience excruciating headaches accompanied by a stiff neck and back.
Heart palpitations; tremors; painful muscle spasms; numbness of the face, hands and feet; and leg weakness to the point of needing a wheelchair are just a few more of the possible symptoms that can develop.
Some people die or wish they would. Suicide is a problem.
Most physicians follow the guideline treatments set forth by the Infectious Diseases Society.
If a person is "lucky" enough to develop a telltale "bull's-eye" rash indicative of Lyme disease infection, they will likely get a few weeks of antibiotics and will probably do well.
Unfortunately, the rash develops only in about half of all cases, and many people don't recall being bitten by a tick.
Even if one knows he or she has been exposed to the bite of a tick and has gotten a rash, he or she will be told they must have "something else" if they are not better after the initial antibiotic treatment.
Many patients find themselves having severe illness, negative tests and disbelieving doctors. The lack of compassion is appalling.
Too often, the patient is labeled as an attention-seeking hypochondriac.
Antidepressants and recommendations to "see a psychologist" are freely dispensed. What doesn't help is that Lyme disease is a relapsing-remitting illness.
A victim may feel quite well one day and will not appear to be ill, but the next day may be bedridden, suffering a variety of symptoms.
The pain can be described as burning rivers of molten lava with shards of broken glass running throughout the body. The intensity varies, but at its worst, it can cause agonized screaming.
A victim of this disease often can't work. He or she never knows how the disease will manifest from day to day or even moment to moment.
Plans are constantly changed and cancelled to accommodate the unpredictability of the illness.
The patient ends up isolated, bored and with dreams dashed. Others don't understand and may accuse the person of laziness.
Marriages are strained, children are disappointed and friends are uncomfortable. The victim's sense of self-worth can be shattered.
Insurance companies will not pay for treatment beyond the standard few weeks of antibiotics.
A Lyme disease patient must see a doctor who is "Lyme-literate." These doctors are few, often far away, and most do not accept insurance.
People have depleted their savings and lost their homes in their efforts to get well. Yet, these doctors are the only ones who offer a lifeline to the victims of this terrible illness.
A holistic approach far beyond just the use of antibiotics is needed for the patient to every have life quality again.
These doctors are able to diagnose the patient clinically because of their extensive familiarity with all aspects of the disease. Many become Lyme-literate because they or a loved one have been stricken with the illness.
All hope is not lost if Lyme disease is diagnosed. Great improvement and even remission can be attained, but not without patience and compliance with the literate doctor's treatment plan.
I suffer from severe, chronic Lyme disease. I got the disease in Maryland in my backyard. I developed a rash and became incredibly ill.
I was hospitalized repeatedly but was denied treatment after the initial round of antibiotics. I was labeled mentally ill and thought my story was unique. It is not.
Ways to avoid tick bites and what to do it you've been bitten can be found on the Internet.
The good news is that not all ticks carry Lyme disease, most people get better with one or two rounds of antibiotics, and even if you do get seriously ill there is hope of improvement or remission with the help of a Lyme-literate physician.
Antenucci is a resident of Endicott.
In your voice Read reactions to this story Newest first Oldest first rickyd wrote: GREAT ARTICLE!
****************************** any other negatives were apparently removed!! bg
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Great article. So clear and well written. I'm going to keep a copy of it!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Excellent article and very well written. I don't know how to review what the comments are, but I did register and clicked on recommend to bring the count up to six.
Good job and thanks for sharing.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks so much, everybody!
They did take away many of the comments. There were a lot of negative, mean-spirited, ignorant ones. It hurt me a little to read them but I've gotten more thick-skinned from all the abuse from doctors!
I just got a phone call from a dear lady who lives in my neighborhood. She wanted to tell me about her daughter who has had Lyme for 11 years and lives in No. Carolina.
She wants her to meet me when she comes to visit in July. Her daughter has had no one to talk to about Lyme and she is a single lady trying to work every day. She sees Dr. J.
I feel good about the article and I'm glad I wrote it. I was very nervous about it but it turned out well.
Thanks again, everyone! - Julie (Lymelady)
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Everyday whether i write anything or not yu guys are an insperation.
I am going to refer as many of my friends to this article if you don't mind.
It not only makes people aware of the dangers but might make it better for them to understand how i feel.
Thank you for the article any little bit to let people know is excellent.
Posts: 13 | From Ridgeway, NC | Registered: Apr 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks, nclymelife. That was my intention in writing the article - to let people know how it feels and to inform them of the "treatment" we receive from doctors.
I hope more than one doctor blushed as he/she read it!
Take care! - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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bettyg
Unregistered
posted
ll, it's amazing how many talented WRITER'S this board has! keep up the good work!
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks, bettyg. You make me smile.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Great article...we are all proud of you Keep up the writing. It will help someone else.
Posts: 422 | From CT | Registered: Oct 2007
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Excellent article. Very clear and to-the-point for people who haven't spent months reading posts on forums like this to educate themselves about lyme disease! Good job!
You know what they say, "If I could help just one person..."? Well, it's great to think that a young lady with lyme might be a little less isolated because of your article.
Mariela
Posts: 23 | From San Francisco, CA | Registered: Apr 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I've had people calling me telling me their Lyme stories. One man told me he got Lymed in 1983 in February in New York state!
He saw a young girl drive off the interstate and down an embankment. He went down to help her, through snow!, and saw that she'd hit a big tree. He saved her life, but the accident stirred some ticks and he thinks one crawled into a hole in his pants.
He ended up with a tick bite, rash, and of course, then got terribly ill.
He said he's never had a problem with doctors, even though he's self-diagnosed. Amazing.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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