BettyG, Iowa lyme activist 
Member since Jan 16, 2009

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RegionName: Woodland Park
OtherArea: IOWA

Recent Comments

Re: “The tick and the time bomb

Adrian, KUDOS for an outstanding, lengthy, detailed article your wrote about Bill Rathbun's lyme disease and the many other lyme patients shown and mentioned in your article! :) I was really impressed with your having quotes from both sides. As I type this being a 39 year NEURO chronic lyme patient, I can't remember the ENTIRE article, and specifically on those areas I want to discuss; we just have lost majority of our cognitive skills and LONG-TERM memory! uffda. I was bitten by a tick from my folk's live Christmas tree in 1969. I never saw it nor had the bulls-eye rash but used my daily journals to trace back to what was happening then in my life!! My roommates and I didn't have pets; it was SUB-ZERO IOWA weather so wasn't outdoors and not a gardener at the time either. Normal ways of being bitten were exclused. Got sick early Jan. 70, and that was the beginning of being MISDIAGNOSED for 35 years by 40-50 drs. before being correctly diagnosed with CHRONIC LYME in 2004 !! We chronic lyme patients worked really hard this past year trying to get our 2 lyme bills in congress "scheduled" to be discussed: S1708 and HR 741, but the IDSA drs. mounted forces and lobbied AGAINST our lyme bills even being heard by the senate and house!! Who are they hurting? WE SICK CHRONIC LYME PATIENTS who need help, care, and understanding to have our health insurance companies being paying their fair share for our bills! As long as the CDC believes/uses the IDSA 06 lyme guidelines which had NO LLMD/ILADS doctors or scientists involved in decision-making, we chronic lyme and co-infection patients are SCREWED royally. They have been taking a LONG time to select this new panel of 14 drs./scientists to review the IDSA 06 LYME GUIDELINES for "conflicts of interest" from those drs. receiving grant/patent money, etc. and being on 2 separate committees writing the SAME LYME LANGUAGE !! That's a conflict of interest BIG TIME! Insurance companies use CDC regs; IDSA guidelines prohibit the use of long-term antibiotics and many other alternative therapies to help get us into REMISSION, and give us back quality of life! In fact, the drs. paid almost $500,000 in LOBBYIST money to NJ's Frank Pallone, CHAIR of health committee in house! We lobbied him WITHOUT GIVING HIM MONEY this past year to get our bill, HR 741, SCHEDULED to be on the agenda to be DISCUSSED for the 1st time in congress after waiting 10.5 years for this monumental event! Last Dec. 08, Pallone said on cspan that he talked to his dr. neighbors, both IDSA/infectious drs., that they felt congress didn't need to schedule lyme bills discussing about RESEARCH, creating lyme advisory board, and treatment of lyme patients. HOG WASH! He's sitting on this and won't take action since IDSA drs. have called, emailed, faxed, and snail mailed him saying NO, DON'T PUT LYME BILL ON AGENDA TO BE HEARD! Pallone stated the bill's house creator had never talked to him about the bill, and they live in the same state! uffda... We chronic lyme/co-infection patients don't have the money to lobby; it's all spent OUT OF POCKET since our insurance companies REFUSE to pay for our appts., treatments, meds, lab work, etc. We are DISCRIMINATED against! We just want our FAIR SHARE paid by our insurance companies just like cancer and hiv/aids patients!! We also would like to have same treatment that Pres. George W. Bush has received since he was biten by a tick and developed LYME DISEASE too, which was announed to public in Aug. 07. You can bet he got the BEST care that America offers, and it was PAID for by his insurance company. IDSA/infectious drs. who UNDERTREAT patients up to 3 weeks max, who don't believe in CHRONIC lyme, and whose patients that have been UNDERtreated with antibiotics thus become CHRONIC LYME! ILADS, Intl. Lyme Associated Disease Society drs. were quoted as well; better known to us chroinc lyme patients as LLMDS, lyme literate mds who treat long-term antibiotics and other alternative ways. I highly recommend folks viewing UNDER OUR SKIN lyme dvd by Andy Abrahamson Wilson, it covers all the history to date, and will start to be playing on the BIG SCREEN in March/April 09 in large cities in USA after being shown privately in libraries, etc. this past year in 50 states!! Adrian, thanks again for the great article you wrote covering so much info! BettyG, Iowa lyme activist

Posted by BettyG, Iowa lyme activist on 01/16/2009 at 1:32 AM

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