Okay, call me crazy or even naive, but after reading the posts about Michael Moore's documentary "Sicko), I decided to pursue a different route. I e-mailed Oprah.
I think the Oprah Winfrey show would provide a good venue for Lyme publicity. She is credible, respected, has a large audience and a lot of appeal; she also has often championed underdogs like us Lymies.
If you would like to e-mail her with a show suggestion (I think some additional interest would help and you might even get to be a guest on the show-I don't want to be because there are many of you who would be much more representative of the difficulties of Lyme and probably more articulate), you can log onto: http://www.oprah.com
Once you are on the site, click on "the Oprah Winfrey Show" on the left hand side.
Then click on "e-mail us". That will send you to another page and you will click on "Do you have a great idea? Send us your show suggestions". Then just fill in the blanks, write your message and you are done.
The following is the e-mail I sent:
A Plea From the Mother of a Child Infected with Lyme Disease
There is a growing epidemic in our country. It is the second largest infectious disease affecting the American population, yet it is greatly misunderstood by the general population, doctors, insurance companies and employers and teachers of those stricken with this illness. Its name is Lyme Disease. Every year the CDC reports an additional 12,000 to 16,000 people contract Lyme Disease, yet the numbers are actually much higher due to the stringent guidelines for reporting set forth by the CDC and the lack of accurate methods of testing.
There are many myths that abound concerning Lyme Disease; they include:
1. A bull's-eye rash always accompanies Lyme. Not true-the rash is seen in only 40-60% of diagnosed cases. Many patients do not even recall a tick bite.
2. One month of treatment should ``cure'' the patient of Lyme and any lingering symptoms are a result of ``Post-Lyme Syndrome'' not an active infection. Actually the bacterial spirochete, borrelia burgdorferi, or Bb, responsible for Lyme is very adept at evading the human immune system as well as many antibiotic treatments and must be treated for an extensive period of time, often years. The Lyme bacteria is very slow to reproduce and to treat Lyme with antibiotics for an equivalent number of reproductions as a strep infection, it would take up to 30 months of treatment. It is also still questionable as to whether or not Lyme can actually be cured or if it may go into a (usually temporary) remission when the spirochete goes into a cystic form or through a dormant phase. Recently on the NBC Nightly News Dr. Brian Fallon of Columbia University indicated that the chronic form of Lyme most likely cannot be completely eradicated from the body and therefore there is not a cure, only management. Also, much of the damage done by Lyme Disease is irreversible, particularly neurological damage.
3. Lyme symptoms are not that serious - just a few aches and pains. Lyme disease causes a multitude of symptoms that can be quite disabling and on occasion, fatal. Lyme is a multi-systemic infection, but the Lyme spirochete, Bb, has an affinity for nervous system tissue and often causes sensory (pain, burning or numbness) or motor symptoms (extreme fatigue, tremor, weakness); also symptoms such as Bell's palsy and loss of balance are common. Neurological complaints are often serious enough to mimic MS or ALS. Many patients are relegated to using a wheelchair or walker. Many suffer from cognitive impairments so severe that they are unable to hold on to a job or perform in school. Other systems involved include the dermatological, the musculoscelatal and the cardiovascular system, often with severe consequences.
4. Lyme can only be contracted by the deer tick and is therefore limited to certain geographical areas. Lyme has been reported in every state in the continental U.S. as well as numerous other countries. The Lyme bacteria, Bb, have been found in the dog tick, the lone star tick and both the eastern and western black-legged ticks.
5. A simple ELISA or IFA test will confirm whether or not one has Lyme Disease. Testing remains woefully inadequate and the ELISA's and other screening tests report huge numbers of false negatives. Most of the available tests do not test for presence of the bacteria, only for an immune response from the host. Other tests that may be more valuable, but are still limited, include the Western Blot or the PCR, but they are seldom used as a first line of testing, only to confirm a positive ELISA or IFA. Because testing is still so limited, a diagnosis should be made based on clinical evidence rather than testing alone. Most doctors are afraid to do this (pressure from insurance companies and fear of loss of standing in the medical community?). Also, many misinformed doctors assume that one negative test should rule out Lyme as a possibility, thus leaving thousands of very sick patients without treatment. Insurance companies are also very reluctant to pay for treatment without positive serology and often the amount of treatment for those with positive tests that is covered is terribly inadequate.
Today, there is still a plethora of misinformation on which doctors are basing their practice of medicine; the above are just a few. Doctors that are on the forefront of research and treatment are often ridiculed for their work and persecuted by insurance companies, the medical community and governmental agencies like the OPCM in New York, yet to the Lyme patients these doctors are their only lifeline and are true heroes. They are the only ones who have recognized, treated and validated what patients have been experiencing often for years without help from the medical establishment. Lyme patients are often misdiagnosed or more frequently, told, ``it is all in your head'' or that they are suffering from ``Lyme Hysteria''. Lyme patients that are lucky enough to get a diagnosis of Lyme have to go through an average of 6-9 doctors and 18 months before receiving the diagnosis (in the case of our daughter who was bitten and hospitalized at age 6, it took over 12 doctors and 5 and 1/2 years before we could find a Lyme Literate MD who would treat her).
Thanks to the brave doctors who do treat aggressively for Lyme, many patients now have hope, but many more have no recourse, their PCP won't give a referral, and may say, ``Lyme doesn't exist in our area'' or insurance companies refuse to cover. Some patients have had to declare bankruptcy and some have even become homeless trying to pay for treatment of this debilitating disease. In New York state, doctors who treat aggressively for Lyme are persecuted, even suspended by the OPCM with no recourse or due process. A reform bill just passed in the NY legislature to amend this situation, but fear abounds that Governor Pataki will veto the bill (many discussions regarding this can be found on message boards such as flash.lymenet.org). This legislation will set a precedent that could ultimately affect the care of thousands of patients across the country. If the bill is vetoed, how many Lyme literate doctors will be afraid to practice what they know to be a way to treat and help their desperate patients?
The public needs to be made aware of the truths of Lyme Disease. Doctors need to be much better educated and insurance companies should have to cover treatment of Lyme. Our school systems need to understand the special needs of children suffering from Lyme. Our children are often met with callous or indifferent treatment by uninformed teachers and administrators; children make up the largest group of new diagnoses and deserve empathy and compassion for the hand they are dealt through no fault of their own. There also needs to be more awareness of prevention of tick borne illnesses. Lyme disease very often is accompanied by a co-infection of other illnesses that can be quite devastating such as Erlichiosis, Babesia and Bartonella. Lyme education needs to be a priority in this country, yet it receives scant attention.
I think the Oprah Winfrey Show would be the perfect venue for a discussion on Lyme Disease. There has been some discussion on message boards of enlisting Michael Moore to include Lyme in his upcoming documentary, ``Sicko'', but although I admire his work, this is a subject that needs to be put forth by a less controversial, more respected source such as Oprah. Oprah, who I view as a modern day hero, so often champions the underdog and Lyme Disease patients are definitely the underdogs in the fight against this illness, uncaring insurance companies and uninformed doctors (not to mention teachers, employers, neighbors, etc.). For my daughter (who is actually one of the more lucky ones) and for the thousands of other sons and daughters, mothers, fathers, brothers, sisters, etc. who make up the faces of Lyme Disease, please consider dedicating a show to informing the public about Lyme Disease and other Tick-Borne Illnesses. You never know who may be bitten next.
A list of informative web sites (compiled by member, Tincup) for new members of lymenetflash follows:
I didn't include the list here because of space and you guys have that info already. Sorry for the length of this post.
Would anyone like to join me in contacting Oprah?