Ann Prow contracted Lyme disease more than 20 years ago after walking through the forests of Door County, Wis.
A tick burrowed under her skin and released the bacteria that causes Lyme disease. After two decades of misdiagnosis and what she said was a lack of medical knowledge, her condition worsened. The bacteria pulsed through her body, sapping energy, creating pain and wasting away her mental acuity.
Then, in 2001, a specialist discovered the root of the problem. Prow had developed what's known as chronic Lyme disease. It's a lifelong illness that -- if not treated -- can cause death and disability.
If diagnosed earlier, Prow believes she could have overcome the illness.
Now that she has regained her strength, she's fighting a new battle against the Infectious Disease Society of America (ISDA). The organization has published guidelines that call into question the validity of Chronic Lyme Disease.
"There is no well-accepted definition of post-Lyme disease syndrome," reported the ISDA. "This has contributed to confusion and controversy and to a lack of firm data."
Without a treatment plan or diagnosis standards, Prow worries that patients with Chronic Lyme disease will continue to live undiagnosed and without proper insurance coverage.
Katherine Morrison, another Payson resident living with Lyme disease, was involved in a Nov. 30 protest rally in New York, speaking out against the ISDA's guidelines.
"My concern is that my insurance will use these guidelines to deny the medication that is helping me regain my health," the Payson resident and Lyme disease sufferer said. "I was very saddened and frustrated at first when I heard about these guidelines.
"It was encouraging that there was such a good turn out for the protest. But, my heart dropped when I saw the sign being held by a little girl. It said, ‘All I want for Christmas is my meds.' That is the bottom line and what this is all about."
Lyme disease is contracted when a tick carrying the offending spirochete -- a type of bacteria -- floods the bloodstream. Early symptoms include a bullseye-like rash on the affected area. As the illness progresses, joint pain, cognitive impairment and chronic fatigue can overwhelm the patient.
"It's hard to get rid of and once you've had it in your body for 20 years, it's hard to eradicate," Prow said.
Prow and her husband, Joe, both have Lyme disease. He, like many others with the illness, was diagnosed with ALS, otherwise known as Lou Gehrig's disease -- a degenerative condition that erodes the nerve cells in the brain and spinal cord. Joe is losing his ability to swallow. Doctors also misdiagnosed Prow. They thought she had chronic fatigue syndrome, characterized by ongoing and profound physical and mental exhaustion.
"Lyme disease is devastating the lives of hundreds of thousands of individuals and we are all at risk," wrote veterinarian Scott Taylor, for the Autoimmunity Research Foundation. "Many patients are suffering with chronic Lyme disease and continue to be misdiagnosed and mistreated. In many cases of Lyme disease, a correct diagnosis doesn't occur until after several months or more often many years of suffering with the disease. By then, it has caused severe illness, disability and permanent damage."
But there's hope. Prow said with immediate medical attention and knowledge, Lyme disease is curable.
For more information about Lyme disease, contact Prow at (928) 468-1410. She is wired into a support network of specialists and fellow patients.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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We may have less rodents, deer and ticks here in Arizona than elsewhere, but lots of Arizonas have gone to highly endemic areas in ignorance, only to bring the bugs back with us.
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Wow..
GREAT article!!! I feel so touched by the story though. Bless their hearts. I hope they feel MUCH better soon!
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
That article is terrific! Thanks for sharing it with us. It's so close to home for me.
I am constantly worrying whether of not my next abx refill will be charged completely to me. I can't afford all the meds I'm on if they're not covered by insurance.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wow. This on line article is more in depth than the short article that was printed in the paper I received at my door step.
I like this one much better. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I'd still like to see the address for the petition printed so we just might get more names on it and the local politicians contacted.
I have run into several people who know people who have had this disease and recovered after a long time and long term abx treatment.
If anyone thinks of it, perhaps you could write a letter to the editor thanking them for the article and including the petition address, etc.
Yes? No? Maybe so? Clear as mud? I thought so.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Ann-OH
Frequent Contributor (5K+ posts)
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You can still sign the one to the US Congress about the Bills for research and education, too. The Bill for doling out the money has been postponed until the next session, but they might be able to get appropriations yet. In any case, Lynne wants this petition to be continued.
posted
I am in my 2nd year of recovery and treatment for Chronic Lyme Disease.
I live in Door County, Wis and was repeatedly told by ignorant IDSA Drs. and others that, "there is no Lyme Disease in your area" One of the lame-brains looked me right in the eye and said, "you do not have Lyme Disease" -- after I handed him my symptom list which had 33 very specific items (all easily recognized Lyme symptoms to any LLMD)
They are a menace to society as a whole and should be muzzled at all costs!!!
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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posted
I am in my 2nd year of recovery and treatment for Chronic Lyme Disease.
I live in Door County, Wis and was repeatedly told by ignorant IDSA Drs. and others that, "there is no Lyme Disease in your area" One of the lame-brains looked me right in the eye and said, "you do not have Lyme Disease" -- after I handed him my symptom list which had 33 very specific items (all easily recognized Lyme symptoms to any LLMD)
They are a menace to society as a whole and should be muzzled at all costs!!!
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Ann,
Thanks for posting the site for the petition. My brain was not working well enough to go the next step.
NOTE: I did have an infectious disease doc in Santa Barbara confirm the lyme dx and tell me that I would discover not eveyone would agree with the lyme dx. He was right.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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I can't afford all the meds I'm on if they're not covered by insurance. ![[shake]](graemlins/shake.gif)
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