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05/27/2010 03:02 AM

saw allergist today; ran into clinic CEO..lyme hit

Posts: 32275
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i hadn't seen my allergist in about 2 yrs. needed a refill of XOPENIX which opens my airwaves when i sleep when i'm all plugged up.

DANCINGWINDE, i took him a copy of your lyme & drs. flyer; asked him to make another copy & give to IDSA infectious dr. 2 doors down from him...yes.

surprise! his wife was bitten by a tick around 1 month ago sharing this with me & i asked more. it was EMBEDDED & FEW DAYS LATER GOT RASH...not bulls-eye he said.

as a dr., he wrote her a rx for 30 days of amoxy.

may i give you advise? yes...needs to be 2 more months after that and NOT showing any symptoms before she stops abx.

told him of local legislature's 11-13 yr. autistic son bitten by a tick & embedded into back of his head & what kids dr. stated ... TICK TESTING IS 100% !! told him otherwise.

asked him to give her the info and join our board; stated i was 1 of 5 group leaders here.

he gave me another rx for my asthma inhaler.

i noticed something new at clinic; gorgeous walnut on wall with 50-75 plagues of RETIRED drs. not pictures but made up like cemetary ones to last a last time...impressive.

man came up behind me & was asking me questions & did i know any; MOST of them except kids drs.

i turned to him their new clinic CEO! bingo; boy, did i hit him up about chronic lyme disease

told him briefly my story; 40-50 of THEIR drs. misdiagnosed me for 35 yrs., and NONE of them ever mentioned possibility of being bitten by a tick and getting lyme disease! NEVER!

and the clinic gets a F on diagnosing & treating lyme disease and co-infections.

ceo stated lyme disease has been discussed lately on drs. rounds, etc.

i told him i spoke at the hospital's foundation meeting last year and hit them all up about NOT diagnosing and treating us with lyme/co-infections.

also told him i had offered to pay for 1 of our chronic llmds to come in and talk to us patients & train their drs. but they refused to get 1 of our ILADS drs.

told them i was withdrawing my offer and then wrote them out of my will since they have diabetes & EDUCATION area!!

he replied have you ever talked to judy, our ombudsman, no, not about this that i can remember.

i've talked to on MANY other things over the 2-3 decades she's been there.

told him other things he should do; showing under our screen & BUYING this for education.

told him the deal w/local legislator's son and kids dr. telling dad that university's testing ticks was 100% ACCURATE! i told him BS! and didn't mince words.

he was really nice and stayed & listened to me.

told him at beginning of conversation i'd written prior 2 ceos there; they didn't have the decency to write or call me!! who were they? the last 2 here.

so it was a profitable day after all!

told allergist he learned as much from me as he gave me.

also had to do the 3 puffs blowing; take deep breath and blow as long as i could. can't do it well, but numbers were ok for him. NO MORE MEDS added on to my long list as is!

2 victories for me today on LYME AWARENESS!! hubba hubba. Cool Silly


05/27/2010 04:06 AM
Posts: 199

Good for you Betty! Good job.

05/27/2010 04:39 AM
Posts: 754

Good Show Betty!!!

05/27/2010 06:59 AM
Posts: 392

Good for you Betty!!! Little by little...

05/27/2010 07:00 AM

Awesome Betty,

I've given copies of UOS to my PCP, Rheumatologist, Endocrinologist, Neurologist. All have watched it and said they learned more about Lyme from watching that movie than any medical literature.

Rheumatologist told me it changed how he diagnoses and treats Lyme.

Gave him the link to the ILADS website.

We can turn this tide, little by little.


05/27/2010 10:56 PM
Posts: 32275
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I'm an Advocate

are you ready for this? clinic's ombudson's office called me today ... woke me up 915 am .. 2 hrs. after i went to bed. boy was she lucky she didn't get the really grumpy betty at that time where i don't mince words.

told her i was sleeping and said i told ceo to call me after 2 pm! "that wasn't passed onto me."

we played phone tag; she was at meeting, then called me back and talked 25 minutes.

you'd think with spending almost 1/2 hr., i would have made a lot of progress ... no, it was like talking to congress!!

i repeated the things i told ceo above including about the kids dr. saying i didn't know what i was talking about, tick testing is 100% said dr; he's right.

requested they pay UOS lyme dvd; i can't ask drs. or tell them anything; that's NOT MY JOB! then whose is it.

i brought up more situations; same answer.

then who is medical director? we have more than one! well then who do i need to talk to for this ... PULMONARY DR!

the answers she gave from there got going downward. i told her it was talking to congress with her/clinic. "the left hand doesn't know what the right hand is doing"!

long pause, i'm sorry you feel you are not being helped; YOU CAN CHOSE ANOTHER DR. OR ANOTHER DRS. FACILITY!

i asked her how long she's been doing this job; 2 yrs. you could tell she was getting uncomfortable by then.

i'm made notes and will convey your concerns on.

WHO are you going to convey these to? mumble gumble not making any sense. i repeated again, who will get your report.

"well i haven't decided yet; maybe some co-workers, maybe judy, the supr." earlier she did say NOT TO CEO; that's NOT IN HIS JOB RESPONSIBILITIES!!

i remembered later, hubby's neurologist dr. is ANOTHER MEDICAL DIRECTOR; i'll send him my thoughts, etc. and see what HE CAN DO! he's IOWA'S HEAD DR. OVER DRS. ASSN. HERE!

also when we finished, i could hear slamming down her phone! we all know how that sounds, don't we.

so much for progress!! i'll have to put another bug in my allergist's ear; he works with the pulmonary dr. mentioned above.

when does all the fighting we do to take 1 step forward STOP, and we can walk down our LYME/YELLOW road to OZ? Sick

05/29/2010 08:26 PM
Posts: 754

Betty, thank you for fighting the good fight and keeping it up!! We are all indebted to you. Much Hugs and Gratitude!

05/29/2010 10:24 PM
Posts: 32275
VIP Member
I'm an Advocate

janet, thank you for your comments and moral support as i continue to fight this.

they'd like nothing better to get rid of me as a patient in their entire mini mayo clinic here! Angry


Post edited by: Bettyg, at: 05/30/2010 10:05 AM

05/30/2010 08:16 AM
Posts: 133

I want to go to Oz, thanks for paving the way, Betty!

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