Here is the article about me!Please, if you have a chance, send a comment to Bowie Blade. They would like to do another follow-up article on me later on and I would like the article to be in the front section of the Bowie Blade this time.
Perhaps if they have many comments and emails sent to them on behaf of this article on Lyme disease, they will put the next article in the more popular section or maybe even do more articles on Lyme disease.
Even just a simple 'nice article on Lyme disease' email would help.
There are more email addresses and numbers for you to contact the Bowie Blade at this link: http://hometownannapolis.com/contactbowie.html
Or just send email to the editor:
Letters to the editor: [email protected]
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Finally, here is the link to the article. I think Cindi did an awesome job:
Diagnosis was elusive for woman with Lyme disease
http://www.bowieblade.com/bowie_top.html
By CINDI SAADI Staff Writer
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Imagine that you cannot remember your 2-year-old's name or how to get to the grocery store. Your bones and muscles ache with pain and you feel like a 90-year-old with Alzheimer's. This is how 29-year-old Jill Fleury described feeling for at least the past four years as a result of having Lyme disease and two related co-infections. A new bill proposed in Maryland offers hope for Fleury and the many other Lyme disease sufferers in the state to receive necessary treatment and insurance coverage.
"It feels like my brain doesn't work properly. It's very disturbing and embarrassing. I often forget what a conversation is about and just have to stop talking," said Fleury.
Fleury's list of symptoms is lengthy (41 so far) and includes severe problems with memory and concentration, muscle spasms, night and day sweats, extreme fatigue, sleep problems, and bone, joint and muscle pain.
"It hurts just to be touched or hugged and that is especially difficult when you have a toddler," said Fleury.
Fleury, who spent most of her life in Bowie, said she can look back now and see that some of her symptoms actually began in her early 20s.
When she became pregnant, her symptoms increased in severity and in number, but Fleury's doctors dismissed her symptoms as being pregnancy-related.
However, her symptoms only worsened after her son was born.
"I saw 12 doctors before finding my current doctor and the most disturbing thing was that a majority of the doctors told me I had anxiety problems. They thought I was making it all up or exaggerating," said Fleury who was diagnosed with everything from allergies to fibromyalgia.
Fleury said that knowledge and research about Lyme disease and other associated diseases is severely lacking. "I even saw an infectious disease specialist. He told me a spinal tap was the only way to detect Lyme, which is false, and told me if I had Lyme for more than one year I would be dead, also untrue. It is truly scary how little doctors know about Lyme," said Fleury.
So Fleury started her own investigation into her health problems. She learned more about Lyme disease and found what is referred to as a Lyme literate medical doctor, who has now been treating her for approximately two months.
Fleury's doctor had also had Lyme disease and experienced many of her symptoms. "It was so nice to have a doctor who knew exactly what I was going through and I felt relieved to finally have an answer," said Fleury.
Lyme disease is caused by the bacterium, Borrelia burgdorferi, which are transmitted to humans by the bite of infected deer ticks.
Early in the illness Lyme disease can be confused with the flu, but as the disease progresses it can lead to cardiac, musculoskeletal, neurological, and/or other system involvement. Patients with chronic Lyme disease often experience severe headaches, fatigue, pain, insomnia, and memory problems.
According to the International Lyme and Associated Diseases Society, the ELISA and Western Blot tests used to diagnose Lyme disease have only a 65 and 90 percent accuracy rate, respectively. Despite this relatively low degree of sensitivity, physicians and insurance companies must rely on these results.
As is not uncommon, Fleury's blood work did not indicate Lyme disease, nor could she recall having been bitten by a tick or having a characteristic bulls-eye shaped red rash.
According to ILADS, fewer than 50 percent of Lyme patients report having the rash.
"Lyme is a clinical diagnosis. All of a person's symptoms must be considered. You can't diagnose it solely based upon blood work or the presence of a rash," said Fleury.
The only abnormal blood test Fleury has had is for C-Reactive Protein, which is generally indicative of inflammation or bacterial infection. Although normal CRP results vary from lab to lab, results between zero and three are generally considered normal.
Fleury's has been as high as 44, but since she began treatment with an LLMD and has been taking high doses of antibiotics, that number is down to 25 and approximately half of her symptoms have faded or ceased.
"It is hard to accept that I can't do several things in one day anymore. I have to just pick one," said Fleury. Fleury said she knows her limits and can tell on any given day what she is capable of doing.
Fleury fears that her son and even husband could have contracted Lyme disease from her. Although he has no symptoms of Lyme disease, Fleury worries that Lyme could have been transmitted to her son in the womb or through her breast milk. "Our worst nightmare is that our son will have to go through all of this," said Fleury.
Fleury's husband has begun to experience memory problems and bone pain and is being monitored by Fleury's doctor.
Dr. Richard Bach of Colmar, Pa. has conducted research on the sexual transmission of Lyme disease and has encountered many sexually-active couples with Lyme disease with only one partner having a history of tick-exposure.
Bach presented test results at the International Scientific Conference on Lyme Disease in 2001 that confirmed the existence of Lyme spirochetes in semen/vaginal secretions.
Aware of entire families who have lost everything, Fleury worries that if her husband becomes ill, they might both be unable to work.
Aside from the difficulty associated with finding a doctor who is knowledgeable about Lyme disease, patients also face difficulties with health insurance coverage. In Fleury's case, her LLMD is not covered by her insurance, but her medications are.
She explained that many people with more severe cases of Lyme disease require intravenous antibiotics for an extended period of time and insurance companies either do not cover intravenous antibiotics or will only allow for 30 days worth of medication.
ILADS reports there has not been one study to prove that 30 days of antibiotic treatment cures Lyme disease.
According to ILADS, an uncomplicated case of chronic Lyme disease requires an average of 6-12 months of high dose antibiotic therapy and many patients require treatment for one to four years or until they are symptom free.
Relapses of the disease have occurred and there are no tests available to assure whether the organism has been eradicated. Fleury worries that she will never truly be free of the disease or "back to normal."
Fleury is very active with Lyme disease organizations and internet support groups. She sent her story to Maryland legislators as written testimony for a March 10 hearing on SB596, a bill designed to provide necessary treatment for those with Lyme and other tick-borne diseases.
If passed, the bill would permit physicians to properly treat patients without being unjustly persecuted or required to adhere to restrictive or outdated guidelines.
For example, the bill would prevent the Board of Physicians from disciplining doctors who prescribe long-term antibiotic treatment for Lyme disease patients. The bill would also provide basic insurance coverage for treatment of Lyme and associated diseases.
Fleury would also like to see Lyme patients provided with government assistance during treatment. "In the past 18 months there is no way I could have worked. Sometimes it is all I can do to just get out of bed," said Fleury.
Sen. Richard Colburn co-sponsored SB596 and one of his legislative aides, Lynette Kenney, noted that over 40 people testified in favor of the bill last Thursday and at least 75 people sent in written testimony.
A booklet of submitted testimonials from people located throughout the state of Maryland, titled Maryland Faces of Lyme, was distributed to members of the Senate Education, Health and Environmental Affairs Committee and may eventually be used for educational purposes.
Kenney stated it really takes people off guard when they find out how many people are suffering immensely - physically, emotionally and financially. "There are families that have to sell their homes in order to pay for treatment. It is a huge problem that has been off the radar," said Kenney.
Kenney said several other states in the region including Rhode Island, Pennsylvania, New Jersey, Connecticut and New York have passed or are debating similar legislation.
The Maryland House of Delegates is considering a separate proposal, HB1323, which would establish a state Lyme disease task force.
According to the Center for Disease Control, there were more than 23,000 reported Lyme disease cases in the United States in 2002 and 95 percent of them were in an area including the East Coast, Minnesota and Wisconsin.
According to the World International Lyme Disease Emergency Rescue Network, Maryland ranks sixth in the nation for the most cases of Lyme disease.
When asked how she handles raising a toddler amidst her health problems, Fleury stated she refuses to be a "sick mom." "I do not want to miss out on my son growing up. That is just not an option," said Fleury.
Fleury would like to have another child someday, but has decided to wait until she is well and can be relatively assured there is no risk of the child getting Lyme disease from her.
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[This message has been edited by JillF (edited 17 March 2005).]
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