subject line: Lyme disease or UNDER OUR SKIN *********************************************************
NOTE: at this time, yahoo is under construction maintenance so this NEW address is NOT fully functional !! Hope they remedy this soon; I've written to webmaster.
DATE: AUG. 1, 2009
TIME: 1 - 3:30 PM
WHERE: Ames Public Library, Farwell Brown auditorium
515 Douglas Ave., Ames
PARKING: N. parking lot
discussion following !
NO KIDS UNDER 10; MATURE SUBJECT !! **************************************************
Andy A. Wilson produced in 2008 this outstanding LYME documentary that covers all the bases of having lyme or co-infections: bartonella, babsiosa, erlichia, Rocky Mountain spotted fever, etc.
It follows 4 patients stories through years of misdiagnosis and complications from their diseases.
Then the POLITICAL scene comes into play since their is a LYME WAR between IDSA, Infectious Disease Society doctors, and our chronic lyme literate mds, LLMDS, in ILADS, International Lyme Associated Disease Society.
IDSA treats from ONE pill to 3 wks. maximum and "you are cured"; they don't believe in CHRONIC LYME. Since they UNDERTREAT, you then become chronic.
ILADS treat longer than 3 weeks of antibiotics up to several years of oral/IV antibiotics.
We currently have 2 bills in congress, HR 1179 and S 1352, creating a lyme and vector-borne advisory committee and educating public.
To date, it's been there 10.5 years and never put on agenda to be discussed since the IDSA lobbies AGAINST it! Conflicts of interest.
Hope to see you all there 8-1, 1-3:30 pm at Ames public library to educate yourself/family!
I've had chronic lyme 39.5 years; 34.5 yrs., misdiagnosed by 40-50 drs!
i'm showing UOS in iowa today from 1 - 330 pm in ames, iowa public library ******************************
hope you can come for those living in the area
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cathy, i loved your snowflake comment today; about what happens when YOU STICK TOGETHER; and it reminded me of our lyme way controversy of the 2 sets of different drs.
just got home from having my AMES, IOWA UNDER OUR SKIN lyme disease 1 hr. 45 min. documentary film shown in our public library to 22-25 folks! i sat right up front at a table; everyone chose to seat in chairs with NO tables; go figure. they would come & go so i don't know who left for good or who went to restrooms.
i had 2 ads in the newspaper; letter to editor where i talked about the lyme war controversy of 2 sets of drs., our lyme bills in congress where chairs were being paid off by infectious drs. NOT to hear our bills, uffda
library would NOT advertise for me since they were NOT sponsoring it; i did this all my myself! they wouldn't let me advertise this INSIDE THEIR DOORS where they show 6 programs going on all the time.
i received 1 phone call asking for info; her son has this in illinois so gave her a lot of info, and her daughter was flying in today from california; she came.
there were 3 of us lyme patients there only; many knew of others having this and were there to get handouts to take to the friends/loved ones.
i went thru the basic steps on PREVENTION OF BEING BITTEN BY TICKS where quite a few questions came up during this plus about the WHITE-FOOTED MOUSE being the major carrier of lyme disease.
1 lady living north of me was saying how many white-footed mice were in her neighborhood! a country lady was saying she had them in her BASEMENT!
read them part of the bill where conn.'s llmd, lyme literate mds, are NOT PROTECTED for 4 weeks or longer antibiotics being given to the patient as long as it was warranted and they were NOT NEGLIGENT.
told them of 7-30-09 DC lyme disease panel meeting discussing/cussing the 06 IDSA drs. lyme guidelines with all the conflicts of interest and not letting our llmds participate in the rule making.
discussed CDC using IDSA lyme guidelines and then our health insurance companies DENYING REIMBURSEMENT TO US making us pay OUT OF POCKET FOR ALL or almost all of our lyme expenses.
talked about our 2 bills in congress there for 10.5 yrs. without ever being ON AGENDA TO DISCUSS, chairman being paid off by lobbyist money...over $505,000 to nj's frank pallone over our subcommittee where our lyme bill is.
there were 2 people there from the 2nd iowa lyme group, and i asked them later what the drs. in iowa are doing now that their group had recruited earlier who would treat ONE lyme patient per week up to 20 people taking 5 months to get into these beginniner llmds.
the other 2 people looked at each other and neither would tell me HOW iowa is handling our llmds in our state knowing i work with people nationwide giving out llmd info, addresses, phone no. and costs involved!!
cathy, that's why your snowflake meant a lot to me where me, being 1 person in NO SUPPORT GROUP WHATSOEVER, and these other 2 people could have shared info to HELP ALL IOWANS.
this is what i've been going thru for the last 5 years; their group is having a 2 day film festival in toledo, iowa, and i advertised their event especially since eve mortenson, open eye films, asked me too; i even had it all typed up and in my 16 page handout i gave each plus 1 LDA ...ABCs of lyme, and IGENEX's western blot blood test brochure.
so i reached out to the other group who in the past 5 years has done some very underhanded things to me during my activism events...
later talking to the librarian who was in charge of the room today, she asked for attendance figures, and said that is the same no. of folks that THEY get for their films they show!
after getting home i thought i'd better check the answering machine just in case anyone called; yes, 1 call.
this woman attended the 2nd half of my film today and sent her husband to attend the 1st half of the film since she had other obligations to go to.
she thanked me so much for what i had done today on educating the public about lyme disease, dr. situation, the endless politics going on, and what i difference i had made today.
she wanted to watch all the film, but not sure about buying it. HOWEVER, SHE SAID SHE WOULD BUY A COPY FOR OUR LIBRARY IF THEY DIDN'T HAVE IT ALREADY!!
i bought the only copy they have giving it to them, and ames, iowa public library is the ONLY library in iowa with UOS! i worked all week.
i had more comments, but caring bridge site had restriction & i just copied from there!! took me 15-20 minutes to get down to their limit that doesn't shop up!!
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