I am trying to stay calm--but I got so excited about all the YaYa stuff I called Senator Frist's office! I usually just email him and get a stock letter back--it's depressing. I actually called once...
I called today! The lady was very nice, listened about my support group, my sick kids, my doctor may be losing perferred provider status, bacteria causing heart problems too--YA YA YA--and she asked me to email her information!!!!!
She was really interested--she had read about Lyme disease in the paper!!!!
So ya'll have got to mail me the very BEST--THE BEST--scientific pdf files known to God--in english of course! Oh I am positively giddy! she said she would personally make sure Senator Frist got the stuff!
So please private email me and I will send you my email address.
This is so good!
Much love to everyone!
Linda
Posted by Neil M Martin (Member # 2357) on :
I hope this helps. Does he have Dr. B's testimony before Congress, and protocol? LDF's "Faces of Lyme" might also be good. NMM
Posted by bettyg (Member # 6147) on :
Linda, a double post looks good to me today ... Sen. Frist's office and Diane Sawyer's asst. calling a member. IT'S "WHOOPIE" TIME. Posted by Lymetoo (Member # 743) on :
Cool!! Good job, Linda!
I lost all my links when my computer crashed AGAIN! So, hopefully, someone will post some good stuff for you!
Posted by pmerv (Member # 1504) on :
Linda, You should tell Senator Frist how much Lyme has cost you in lost income and medical expenses, how many people with Lyme disease you know in TN, how hard it is to get proper care, and emphasize that if it were addressed up front and treated adequately it would cost much less in the long run. By denying care, the insurance companies are able to shift their cost to the states.
Here's a sample letter -
Dear Senator Frist:
I am writing to ask you to support S 1479 (Dodds/Santorum) Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2005.
S. 1479 recognizes Lyme disease as a serious and debilitating illness, often misdiagnosed and under-reported, that is sometimes complicated by other tick-borne co-infections. The CDC admits that only 10 percent of cases are reported. A Georgia study suggests that only one case in FORTY is reported. That does not count cases never reported at all - Lyme-lookalike MS, ALS, juvenile rheumatoid arthritis, chronic fatigue, fibromyalgia, and many others.
S 1479 establishes a Tick-Borne Diseases Advisory Committee to advise the Secretary and the Assistant Secretary for Health. One of the Committee's important responsibilities is to "ensure that a broad spectrum of scientific viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced." In addition, the Committee must include ``scientific community members representing the broad spectrum of viewpoints.'' These provisions ensure that the expertise of our most experienced Lyme treating physicians is not excluded by the powerful monopoly of the Infectious Disease Society of America, which is on record as not believing in chronic, persistent Lyme disease. They call it ``post-Lyme syndrome'' and do not treat it with the antibiotics many patients and doctors have found life-saving.
S. 1479 also calls for improvements in three broad categories - diagnostic tests, surveillance; prevention - and for clinical outcomes research. The bill authorizes an additional $100 million over five years to accomplish these activities.
Please contact Senator Dodd's office and sign onto S. 1479 as a co-sponsor, and urge your colleagues to join you. Lyme disease is a nationwide health problem that needs and deserves serious efforts to contain it and prevent it. Over 90 Lyme disease groups support this bill and its companion bill, HR 3427, and stand ready to thank you for helping us.
Sincerely yours,
Posted by tequeslady (Member # 6832) on :
Do you have virus checker software, Lymetoo; such as Norton or McAfee?
I think you mentioned that you crashed again because your computer got a virus.
quote:Originally posted by Lymetoo: Cool!! Good job, Linda!
I lost all my links when my computer crashed AGAIN! So, hopefully, someone will post some good stuff for you!
Posted by joehm (Member # 8497) on :
Don't get too excited, I am 78 yrs old,a veteran of two wars,have had lyme for 17 years and have seen every kind of supposed support come and go. Remember you are trying to deal with an administration that opposed SS,Medicare and now the worst drug bill in creation which dictates that it is against the law to negotiate lower drug prices with the drug companies. There isn't any support to mandate insurance companies for full coverage for lymes patients. They support cuts in health, medicad and medicare. We now have 49 million without healthcare. What makes you think they give a damn about a few lyme patients? If you are rich and a drug company they will give you the house but if you belong to the masses and need help you are on your own. Remember their platform, they beleive you have to pull yourself up by your own bootstraps. Every state has just been dealt another blow, their new bill mandates that no federal funding if the state doesn't cut their welfare role by 50 %. Guess whose taxes will pay for that. joehm
Posted by Linda LD (Member # 6663) on :
Good reality check Joe.
Linda
Posted by bettyg (Member # 6147) on :
Linda, before I forget, someone mentioned the costs of lyme, etc. Please do a search for TINCUP'S 4 polls: med costs, no. of drs. seen, insurance problems, & can't remember the name of the other.
Suggest you check TREEPATROL'S NEWBIE LINKS. Tree may have posted Tincup's FINAL results of the survey of about 100 lyme folks online. Very impressive statistics.
Joe, I'm breaking this up this long paragraph to shorter ones making it easier for me to read.
quote:Originally posted by joehm: Don't get too excited! I am 78 yrs old,a veteran of two wars, have had lyme for 17 years and have seen every kind of supposed support come and go.
Remember you are trying to deal with an administration that opposed SS, Medicare, and now the worst drug bill in creation, which dictates that it is against the law to negotiate lower drug prices with the drug companies.
There isn't any support to mandate insurance companies for full coverage for lyme patients.
They support cuts in health, medicad and medicare. We now have 49 million without health care.
What makes you think they give a damn about a few lyme patients? If you are rich and a drug company, they will give you the house but if you belong to the masses and need help, you are on your own.
Remember their platform, they beleive you have to pull yourself up by your own bootstraps. Every state has just been dealt another blow, their new bill mandates that no federal funding if the state doesn't cut their welfare role by 50 %. Guess whose taxes will pay for that. joehm
Joe, great job telling it like it is from a veteran's perception!
Bettyg, Iowa
Posted by hopeful123 (Member # 3244) on :
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