This is the email I sent, of course changing the names for each different person.
Dear Representative XXXXXXX. I reside in Mobile, Alabama. While living recently in Connecticut, my entire family contracted lyme disease that went undiagnosed due to physician ignorance. We now live in Alabama and have to travel many states away to find appropriate care to keep us functioning.
Perhaps you are familiar with a new lyme bill coming up for a vote. It would allocate spending for the education and research necessary to combat this very debilitating illness. Lyme is the fastest growing infectious disease in the country, and the least understood.
I can talk with you further about this subject at your convenience. Below is more information about the bill we lyme patients need your support with. Our best effort for helping lyme victims would be if you would be a co-sponsor of the below bill.
Mobile, AL
Update - H.R.741 has been introduced by Rep. Smith! List of cosponsors below, 13 so far. Full text of legislation is here:
H.R.741 Title: To provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.
Sponsor: Rep Smith, Christopher H. [NJ-4] (introduced 1/31/2007)
Cosponsors (13)
Latest Major Action: 1/31/2007 Referred to House committee.
Status: Referred to the House Committee on Energy and Commerce.
Cosponsors: Rep Ackerman, Gary L. [NY-5] - 1/31/2007 Rep Baird, Brian [WA-3] - 1/31/2007 Rep Bean, Melissa L. [IL-8] - 1/31/2007 Rep DeLauro, Rosa L. [CT-3] - 1/31/2007 Rep Gilchrest, Wayne T. [MD-1] - 1/31/2007 Rep Grijalva, Raul M. [AZ-7] - 1/31/2007 Rep Holden, Tim [PA-17] - 1/31/2007 Rep Kirk, Mark Steven [IL-10] - 1/31/2007 Rep Langevin, James R. [RI-2] - 1/31/2007 Rep Lowey, Nita M. [NY-18] - 1/31/2007 Rep McHugh, John M. [NY-23] - 1/31/2007 Rep Shays, Christopher [CT-4] - 1/31/2007 Rep Stupak, Bart [MI-1] - 1/31/2007
[ 14. March 2007, 07:53 PM: Message edited by: lymewreck36 ]
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Way to Go!! Well, that answers some of my questions I asked in my PM to you. So, you didn't get Lyme here, but that is ok. People can still have it! Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
So glad you replied. Yes, I did get it here when I was very young. I was about 11. I went on in my teen years and early adult to have growing muscular skeletal problems, sleep disorder, severe nighmares, etc. As these problems became greater and greater, each of my children born had increasing neurological problems that I now understand to be caused by lyme disease.
Finally, my third daughter, I found out when I was 20 weeks pregnant, did not have functioning kidneys. I carried her until I was 35 weeks pregnant, and then she was still born.
Still did not have a lyme diagnosis by this time, but was told I have fibromyalgia. We did an autopsy on the baby, and they could not find a reason for multi-cystic kidneys she had.
Years later after having my lyme diagnosis, I looked back on the path of my illness and looked up gestational lyme, and found it could cause multi-cystic kidneys.
After the death of my third daughter, my family moved to Connecticut. I was pregnant with my fourth daughter. My health was doing better at that time, and my daughter was born healthy as well.
Then I became a girl scout leader, as my girls were all girl scouts, and we hiked and camped in tick ridden Connecticut.
I also created the most beautiful English gardens in my yard. IN the year 2,000, I collapsed with illness. I was told my fibromyalgia was worse. I upped my doxicyline that I was taking for adult acne because we were traveling over seas, and I got better. I did not make that connection at the time.
In 2002, I fell again, this time with bilateral bells palsy, and horrible synovitis/arthritis as well. Still told my fibromyalgia was bad. This time I knew better. FMS does NOT cause palsy and fever!
It was then I became lyme literate and found a lyme literate physician, DR. P. During the next year I read widely about lyme and started connecting the pieces of my life. How it all made sense for the first time.
IN the mean time, my children were looking pale. I was quite bedridden and did not take them to the doctor. I could not convince my husband that they probably had lyme disease.
Finally a year later, I got them to the doctor. They were all diagnosed by Dr. H in New York, and Dr. J in Connecticut.
My husband was shocked. I then told him that he was sick. We sat and discussed this seriously, and reviewed how robust he used to be, and the nagging problems he was having. He went on and tested positive for lyme and started treatment. Herxing in all cases proved me right.
We now live in Alabama again. My girls are going Girl Scout camping this weekend for Camporee. I am holding my breath. This makes me extremely uncomfortable. Of course, if we were in CT, I would not allow it.
Yes, I have run into several people here in Alabama since I moved back and recognized that they have lyme and sent them on for a diagnosis. It is all over the place. 50 years from now society will look back with horror. The snake is in the grass.
You take care of you.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Wow...that is quite some story. I am so sorry you lost a child like that. If only you had been diagnosed with lyme and had known. That is terrible.
Ok, so you did get Lyme in Alabama. Ok, that makes me feel more confident. I am sorry your children and your husbaand also have it. It so many people in the north western states have or get Lyme how come people in the U.S don't know more about it?
That is so crazy. Well, thanks so much for sharing your story with me. See ya!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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