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We discussed Lyme disease in general and its negative impact on my life in specific. The meeting was arranged by a friend of mine and I found the Senator to be attentive and refreshingly honest in his approach to the issue.
Prior to the meeting I had gathered all information I felt to be pertinent to the topic: copies of medical records, (social security) notifications of denial, letters written to other elected officials and various information concerning Lyme disease. I assumed that the Senator had little knowledge - other than common misconceptions - regarding the disease and prepared myself on the basis of that assumption.
In addition I included a copy of my book; figuring it would have a longer-lasting impact than 30 minutes of talking. I'm not sure if he will read it, or not, but I did get the feeling that he was interested.
Senator Van Drew took copious notes in between asking multiple questions and declared a personal interest in helping. After years of being ignored, I found his actions to be both refreshing and rewarding. Sometimes a willing ear can do wondrous good for the troubled soul.
I explained the sad fact that I am not alone in this battle; there are many others who suffer from the same, or worse, symptoms that all but cripple me. I told him about the pain, the memory loss, the difficulties controlling my limbs, brain fog, getting lost in familiar places and the myriad of other problems plaguing those with Lyme. I described the many ways those problems are compounded by outside forces beyond my control: the financial ruin, the stress, and the depression that invariably follows. I told him that I was a shell of my former self and that this was common among those suffering from Lyme disease.
The Senator explained his belief that a united effort, on behalf of Lyme sufferers, would be the single best approach to obtaining meaningful legislation for the cause. (Unfortunately that approach isn't as simple as it seems: as infighting appears to be rather common amongst the various forums I've dared to tread.) Still, I recognize the wisdom of his words and will work to make that united front a reality.
I left with a feeling of accomplishment and time well spent; though the Senator had promised to do his best to help, he couldn't promise results. But he had listened to me, and that felt good.
(I'm trying to get an appointment with Congressman Lobiondo set up - hopefully sometime early next year)
Posts: 31 | From New Jersey | Registered: Jun 2007
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thanks so much for taking the time and effort to speak to the Senator on our be have...
sounds like it went very well... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Thank you!!!!
Posts: 526 | From NJ | Registered: May 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
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I am glad your meeting went well. I do agree that it is a united front and numbers that will help no matter what one is trying to accomplish.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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I am planning on contacting all of my Congressional Representatives from Connecticut to urge more funding for Lyme research. It is very clear that much more needs to be known about this disease, including different diagnostic testing, the evolution of the disease and changes in treatment protocols. More than 265,000 cases of Lyme have been reported to the CDC by the end of 2007.
My son, now 18, has had Lyme Disease three times. Since December 2006, he has not been himself, in spite of 4 rounds of oral abx and one round of IV abx. While on abx, we never saw real improvement, and within months after coming off, he goes into a significant decline.
I recently read several articles that discuss the same thing with the bb bacteria, and that is with certain antibiotics that are recommended for use in the treatment of Lyme, the bacteria mutates itself from the spirochete form, rending it resistant to the antibiotics. This helps explain why my son and others have not responded to the recommended protocol. Now we have to find a doctor who is willing to use a combination of different antibiotics to get rid of Lyme forever.
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Sample letter to Congressional representatives:
I am contacting you to request that more funding be provided for the research into Lyme Disease. Since the end of 2007, more than 265,000 cases of Lyme Disease have been reported to the CDC, with Connecticut ranking third in the number of cases.
It is very clear that much more needs to be known about this disease, including different diagnostic testing, the evolution of the disease and changes in treatment protocols. The recommended treatment protocols used for late stage Lyme Disease can actually increase the severity of the disease, because the recommended cephalosporin antibiotics (also known as beta lactims) actually PROMOTE formation of dangerous l-form bacteria, meaning that using antibiotics such as penicillin, amoxicillin, or rocephin, can lead to a worsening of chronic disease.
Testing for Lyme Disease primarily relies on the Western Blot test, which measures antibodies. The test has two subsets. The first measures IGg bands, which are take longer to become unreactive in time and thus are not useful in identifying new exposure to Lyme. The second subset measures IGm bands, which are used to identify active Lyme disease. These bands typically take four to six months to become reactive after successful treatment. To date, no test has been approved that would specifically identify the bacteria in the system.
The National Institute of Allergy and Infectious Diseases is currently conducting a multi-year study in Maryland. This study is designed to establish a population of patients with Lyme disease for evaluation, treatment and follow-up to learn more about the infection, yet the study appears to be limited in scope.
I recently read several articles that discuss the same thing with the bb bacteria, and that is with certain antibiotics that are recommended for use in the treatment of Lyme, the bacteria mutates itself from the spirochete form, rending it resistant to the antibiotics. This helps explain why my son and others have not responded to the recommended protocol. This means more research is needed to revise the recommended protocol. Link to article: www.guiltedgirls.tripod.com/id25.html
There are many people who are completely debilitated by this disease. I urge you to support more funding into the research of this disease so that there is clear and consistent information available, with patients treated appropriately so that they can return to normal and productive lives. The money spent on research will pay itself back in reduced medical claims, days lost from work and decreased disability claims.
[ Insert your own personal story here].My son, now 18, has had Lyme Disease three times. Since December 2006, he has not been himself, in spite of 4 rounds of oral antibiotics and one round of IV antibiotics. While on antibiotics, we never saw real improvement, and within months after coming off, he goes into a significant decline. This treatment has cost well over $10,000 and includes hospitalization for a PICC line infection, which could have been life threatening. He has been off antibiotics now for six weeks and is now suffering from: * Chronic knee pains that have been increasing in severity and frequency over the past two years. NAISDs do not provide relief. * An irregular sleep schedule and fatigue that worsens once off antibiotics. He can sleep ten hours a night and still have dark circles under his eyes. The fatigue is impacting his ability to function, with him resting most of the day. His social life has dropped considerably. This is especially concerning because he is hyperactive and has always been known for his incredible amount of energy. * Headaches are now occurring on a regular basis, something which he never experienced before Lyme Disease. * Memory impairment, which shows itself in many different ways. * Diminished appetite, which is unusual in an 18 year old.
Please feel free to contact me with any questions you might have.
-------------------- Audrey Posts: 19 | From East Lyme, CT | Registered: Feb 2007
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This is what I received from Congressman Joe Courtney in response to my e-mail. As you will note, there is a bill that has been presented to fund more research for Lyme. Please write to your congressional representatives in support of this bill!
Dear Ms. XXXX,
Thank you for contacting me regarding Lyme Disease. I appreciate your comments and having the benefit of your views.
Lyme disease, named after a town in the 2nd District, is well-known to residents of Connecticut. Although early stage Lyme disease is easily treated with simple antibiotics, treatment options for late stages of this disease remain incomplete. Because misdiagnosis is often problematic with Lyme disease, which often delays timely early stage treatment, we must continue to explore options for individuals suffering from late stages of this disease. This is why I am pleased to cosponsor the Lyme and Tick-Borne Disease Prevention, Education, and Research Act (H.R. 741), legislation that would support comprehensive Lyme disease research, treatment and management.
The Lyme and Tick-Borne Disease Prevention, Education, and Research Act, which was introduced by Representative Christopher Smith (R-NJ), would establish a Tick-Borne Disease Advisory Committee. This committee would ensure interagency cooperation of disease research, support public collaboration with private research institutions and advise federal agencies on Lyme disease priorities, among many other objectives. In addition, H.R. 741 would address the prevalence of this disease and improve and expand public education outreach.
On February 2, 2007, H.R. 741 was referred to the House Energy and Commerce Subcommittee on Health. As a cosponsor of this legislation, I will continue to support H.R. 741 through future legislative processes and similar legislation in the 111th Congress.
Should you have any additional comments or suggestions, please do not hesitate to contact me in the future. For more information on my views on other issues or to see what I have been working on in Congress, please feel free to visit my official website at www.house.gov/courtney and sign up for my e-newsletter. Sincerely, JOSEPH COURTNEY Member of Congress
-------------------- Audrey Posts: 19 | From East Lyme, CT | Registered: Feb 2007
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Insert your own personal story here].My son, now 18, has had Lyme Disease three times. Since December 2006, he has not been himself, in spite of 4 rounds of oral antibiotics and one round of IV antibiotics. While on antibiotics, we never saw real improvement, and within months after coming off, he goes into a significant decline. This treatment has cost well over $10,000 and includes hospitalization for a PICC line infection, which could have been life threatening. He has been off antibiotics now for six weeks and is now suffering from:![[Big Grin]](biggrin.gif)
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