OPINION: Dear Pennsylvania legislators, Lyme disease isn't always diagnosed by a test
Linda Olley, a registered nurse, Lyme patient, and leader of the Harrisburg, PA, Lyme disease support group, weighs in on why PA's proposed Lyme doctor protection bill is so desperately needed.
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From the Patriot-News:
Dear PA legislators: Lyme disease isn’t always diagnosed by a test
Published: Saturday, August 07, 2010, 7:50 AM
by Linda Olley
I am a great lover of the outdoors. I grew up in a cottage on the Susquehanna River, and as an adult I owned a summer cottage from 1970 to 1994.
But one of the realities of the outdoors in Pennsylvania is possible exposure to ticks with Lyme disease. It takes only one bite from an infected tick to cause the disease.
Unfortunately, I got that one fateful bite sometime in 1984.
I awoke with flulike symptoms: stiff neck, chills, fever, migraine-type headaches and general malaise. I was put on an antibiotic for 10 days. The symptoms disappeared — or so I thought. Three months later, I experienced more joint pain and swelling, particularly obvious in one wrist.
Despite a referral to a rhumatologist and extensive testing, including for Lyme disease, all test results were negative. I was diagnosed, incorrectly, with atypical sero-negative rheumatoid arthritis. It was only later — after more pain, suffering and extensive testing — that I learned the truth.
My story echoes that of many Lyme disease sufferers: Sometimes our results are negative in the formal diagnostic test even though we have Lyme disease. Medicine is not an absolute science.
My personal experience and my years of work as a registered nurse lead me to support critical legislation for Pennsylvania: Senate Bill 1199, the Lyme and Related Tick-Borne Disease Education, Prevention and Treatment Act.
It would protect physicians, allowing them to use clinical discretion in diagnosing and determining treatments for all patients with Lyme and other tick-borne diseases. Three other Northeastern states have passed a similar Lyme bill.
Read the rest of the article here.
I've reviewed some comments of people supporting the AMA's stance online. I can only say if they had to deal with the devastating pain and suffering of lyme, and its deleterious effects on multi-systems and organs, their response would be different!! Do you know that little children have to be home schooled, because their bodies are ravaged with pain? I would wish this on no one, not even to achieve our objective of passing this bill. This is a serious bacterial infection, not a virus we are dealing with. Toxic drugs and their possible/actual side effects are utilized by physicians every day to treat other illnesses and diseases, some used for a lifetime. Since this is such a controversial issue with a different standard of care in relationship to other diseases, I believe that a release of liability form to protect physicians to treat us, or a consent form signed by the patient stating risks have been explained, they understand the risks and are willing to assume responsibiity for said risks is a viable solution. This would be an alternative if this bill is not passed. It seems to me and probably the hundreds of thousands of lyme sufferers everywhere to be a travesty of injustice and a violation of our human rights. I will not give up our plight!! If this was your life or the life of your child, what would you do??? Death has been and will be the end result, not from the disease itself, but from comlications of the disease. The failure to pass this bill will be contributing to the demise of Lyme patients in the nation. The disease is ubiquitous. People travel, pets travel, and there are now more identifiable modes of transmission.
I am a 4-yr Lyme sufferer, who has been on antibiotics for most of that time. I am not a hypochondriac looking for attention. I am not depressed, looking for excuses to sit around doing little productive work. I am searching for a way to recover completely so that I am not sidelined by this indidious ailment. I have at least one co-infection: Babesiosis. When treated with anti-malarials, I am able to function. When I taper off the meds, I get worse (brain-fog, crushing fatigue, memory-lapses). I trust my competent Lyme physician to find the correct meds, at the optimum dosage, for the right length of time, to be finally well. Many mainstream DRs, especially those from Infectious Diseases Society of America(IDSA) claim that long-term antibiotics use is risky, that there are too many side-effects. Don't they know thatside-effects from long-term antibiotics use can be managed using probiotics and antifungals? IDSA specialists often cause serious trouble when treating patients with antibiotics because they do not anticipate GI upset/yeast overgrowth, nor use simple preventive methods. The IDSA claims that if a patient relapses after one or two 30-day courses of antibiotics, then the patient is suffering Post-Lyme Syndrome. The term "Post Lyme Syndrome" is a contrived term based on opinion, not science. If you repeat something over & over, it does not make it fact. There is no hard science on either side of the Lyme debate, but Lyme advocates WILL tell you there are TWO sides to the story; Mainstream medical personnel WILL NOT. They circle the wagons, defending their own indefensible stance. Only time will tell whether Lyme patients will get the treatment & respect they deserve. IDSA & insurance interests may fight against proper patient care but they will not prevail. Look how long it took for AIDS patients to be respected & receive good care.
I am a 4-yr Lyme sufferer, who has been on antibiotics for most of that time. I am not a hypochondriac looking for attention. I am not depressed, looking for excuses to sit around doing little productive work. I am searching for a way to recover completely so that I am not sidelined by this indidious ailment. I have at least one co-infection: Babesiosis. When treated with anti-malarials, I am able to function. When I taper off the meds, I get worse (brain-fog, crushing fatigue, memory-lapses). I trust my competent Lyme physician to find the correct meds, at the optimum dosage, for the right length of time, to be finally well. Many mainstream DRs, especially those from Infectious Diseases Society of America(IDSA) claim that long-term antibiotics use is risky, that there are too many side-effects. Don't they know thatside-effects from long-term antibiotics use can be managed using probiotics and antifungals? IDSA specialists often cause serious trouble when treating patients with antibiotics because they do not anticipate GI upset/yeast overgrowth, nor use simple preventive methods. The IDSA claims that if a patient relapses after one or two 30-day courses of antibiotics, then the patient is suffering Post-Lyme Syndrome. The term "Post Lyme Syndrome" is a contrived term based on opinion, not science. If you repeat something over & over, it does not make it fact. There is no hard science on either side of the Lyme debate, but Lyme advocates WILL tell you there are TWO sides to the story; Mainstream medical personnel WILL NOT. They circle the wagons, defending their own indefensible stance. Only time will tell whether Lyme patients will get the treatment & respect they deserve. IDSA & insurance interests may fight against proper patient care but they will not prevail. Look how long it took for AIDS patients to be respected & receive good care.
Patients have the right to be a co-partner with all the decision regarding prescribled medications, tests, treatment modalities. It is our mind, body and spirit that is being afflicted.
To deny otherwise, I deem to be a violation of the patient's bill of rights. I would not wish Lyme disease on anyone, including the Doctors who oppose the bill, not even to achieve the objectives of the lyme community: To improve our health, well-being and quality of life. Doctors: What would you do if this was your child, grandchild, wife, Mother, Father, brother, sister or friend?
apparently this SB1199 will not move on. from my friend this week, I got a call from my state senator today She is on the Banking &
Insurance Committee where the senate bill 1199 is currently stuck. She tells me
there are no plans to move it out of committee – due to the projected cost to
insurers!
I asked about the provision to allow doctors to treat with long term
antibiotics, without fear of repercussions. She did not seem to be familiar
with this, so I referred her to the bill. Upon reviewing it, she stated that
she did not think any doctors had been reprimanded for this… I asked her why
it was then a part of this bill, if it was not a problem. She said that she
will check with the PA State Board of Medicine to see if any doctor has been
disciplined for this and get back to me.
well she got back…She tells me that there have
been no cases where the PA Board of Medicine has reprimanded a doctor for
prescribing a long-term course of antibiotics to treat Lyme disease.
She says the chairman of the committee has no plan to move the bill forward.
The problem being that it is felt to legislate the method of treatment.
one thing i am very curious is can lyme patients give blood? is it in our blood banks, can doctors answer that considering they have no knowledge about spirogetes and other bacteria and the parasites that you get from lyme! i do not live in penna. but i have lyme and i just can't believe how this can possibly take place in america. there is nothing i can do now but to endure. but to think of the children who do play outside. maybe staying on the computer is a good idea these days.
i have sent out emails to everyone in penna i know to call their senator and house rep for HB894.