Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
When someone tries to tell a person something totally outrageous and expects them to believe it... folks round here usually look at them and say...
"That dog don't hunt."
As Bumsteere's out-to-lunch bunch keeps sinking lower and lower with the government's "boom" on their head... and patient's are fighting back in bigger numbers... and the truth is coming at them from all directions.. they are panicking and digging up their old tactics which they used against Lyme patients years ago.
1. They are already starting to reuse some trash lines that actually worked on a number of idiot ducks and reporters in the past (the REALLY stupid ones). They claimed Lyme patients are not physically sick... they are all just crazy.
2. They are trying to "bully" or "get to" or "use" those they feel are influential and pose some sort of threat to them. (Example- Negative newspaper articles, editors and Blumenthal)
3. They are playing the whiny-baby sissy game, "Why are Lyme patients picking on me... I'm so good and honorable?"
4. They are attempting to redirect focus from their bad research conclusions.. which were based on their own bad tests, research, and guidelines.... and trying to pick apart others research.. as if they OWN the gold standard and are THE Almighty himself.
5. As more and more doctors realize the Bumsteere gang are the boys with the stinky pants and are backing away or running from them.. they are trying to recruit new dummies to take their place. (example- New guideline authors this time around)
To keep that type of TRASH from making it anywhere or posing a threat to us all.. please don't wait and let the other guy do something.
EVERY time you have a chance to tell others.. be it the press.. other ducks... and even the Bumsteere gang members themselves... that they aren't going to succeed this time... and we are NOT going away...
PLEASE stand up and shout from the roof tops....
THAT DOG DON'T HUNT!
From what I am seeing.. many of you are doing a GREAT job saying just that!! Keep up the good work.. and let's get others to do the same.
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Reminds me of another area in our world that uses similar tactics..and has used them effectively...much to my disappointment.
I have chosen to call such persons "Shrubs", if you know what I mean.
Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Tincup,
My husband and I may have a unique opportunity to at least bring the topic of Lyme disease to hundreds
of thousands of talk radio listeners in the next month.
My husband used to have a radio show on this station, knows the manager, and has been invited to talk about our situation re: inability to rebuild
following Katrina due to local goverment issues. Although the focus of the show will be our apparent "discrimination" against us,
my husband will be mentioning the fact that we (he, myself and my neighbor) believe that we were all exposed to Lyme
following the hurricane due to living outside for 34 days.
It is my hope that this sparks more interest in the topic and that a whole show will be devoted to Lyme disease.
The manager of the show is coming over to see us this weekend.
I am going to make sure I mention Lyme disease to him and see if the "host" would be interested in doing a show on this.
I agree with everything you said. I for one will keep plugging away.
One pharmacist at a time, one friend at a time, someone in the line next to me at the grocery store....
Just found out yesterday as my nighbor was at our LLMD, that there are 5 members of same family from the same area with Lyme.
Two have picc lines.
The tactics of the Infectious disease ducks remind me of a petulant child, who when he does not get his way,
packs up all his toys and goes home.
"I don't want to play with you anymore!"
Good. 'Cause I don't want to play with you either!!!!
That dog don't hunt.......but I sure do!!!!!!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo ho BW...
Sounds to me like you are beating around the bush! HA!
````````````````````````````````````````
G...
You said.. "One pharmacist at a time, one friend at a time, someone in the line next to me at the grocery store...."
GOOD FOR YOU!!!!
Those are the folks who actually HEAR us and spread the word.
And I like the radio idea! You are brave souls!! Good for you for doing this important project!!! Also for hubby.. a big rowdy cheer!
Now.. I am sitting here wondering how to say this without sounding bossy or like I think you OR others reading this don't know better.. BUT..
To let you know.. I just gave myself a BIG long lecture because I am getting ready to have to be involved with some projects which I normally tend to mess up royally.
Sooooooooo.. I'll share with you what I've had to slap myself around for doing in the past... and reinforce it with myself as I am writing this, as well as, hopefully remind folks of a warning of sorts.
Did that explanation above just get me out of any hot water I'm getting ready to jump in? I do hope so.
If we look at the post I made above that said...
"1. They are already starting to reuse some trash lines that actually worked on a number of idiot ducks and reporters in the past (the REALLY stupid ones). They claimed Lyme patients are not physically sick... they are all just crazy."
Especially when dealing with the media.. we need to be really careful to stick to the facts as to NOT lend credibility to the fact we are all crazy. We must stick to the EASY and provable.. and well-documented facts.
The big ducks WANT us to "blow it" by saying ANYTHING we can't 100 percent prove... anything that they can come back on and discredit. They salivate over that sort of stuff.
Example.. getting Lyme in your area after Katrina. YOU know, 100 percent I believe that is not only possible.. but VERY probable. I do not see that as something even unusual.. not at all.
But.. you DO know an official "reported case" of Lyme needs a documented tick bite, a rash, and positive blood work.. along with associated symptoms. Otherwise.. to the IDIOTS.. the sad sorry jerks they are... to the IDIOTS, it would only be used against you and others if ALL of those facts weren't in place.
So do be aware that if this is not the case with you... even though it is true and you know it to be so... your entire talk would be tossed aside as gibberish by the duck world.
I KNOW!! It isn't fair.. and it isn't right.. and ducks suck... etc. BUT..
If you open the door to something that can't be documented 100 percent... you'll be tossed out with your effort to help... like a baby with the bath water.. and it will affect the Lyme communities credibility... as well as your own for future dealings.
Again.. I mention this ONLY because I personally must learn how to curb my own passion for the topic.. knowing what I do.. and I must walk the line to some extent.. (keep my big mouth shut) so it can't be used against any of the patients now, or in the future.
THAT is one reason I said immediately that you are "brave souls". I can't do that type of thing you are. NOT AT ALL! And it is for that very reason. (Who ME? Can't keep her big mouth shut? Who would believe THAT? HA!)
If I have to stop and wait for someone to "officially prove" what I already know (just like you when you help all the folks YOU are helping).. more folks WILL get hurt. So I toss that strict rule out while I'm here (although I do document, document, document.. BUT.. I must calm myself down before going to the public or to the media.
By the way.. that is exactly why.. when I get my big foot in the door of a media outlett.. I immediately RUN to someone MUCH smarter and better at this than I am.. and cry.. "Please help me!"
NOT that you need to... not at all. I just KNOW I am AWFUL at speaking about Lyme in public... so I do the Lyme community a favor by avoiding it.
I hope everyone understands WHY I am saying all this stuff. May is Lyme Disease Awareness month.. and I am working on getting proclamations in a number of states/counties.. and I'm afraid I MIGHT get stuck having to speak in public... or as I call it.. "act right". HA!
Good luck! Let us know how it goes!
I am VERY proud of you and your effort!!! Thank you!
I am always amazed at your wisdom, and the above writing is a masterpiece! You put this into words far better than I, or anyone I know, could have, without offending anyone. This is something that we all need to be aware of when speaking out on Lyme, to the press, to local, state, and national representatives, everyone - even the person you talk to in line at the grocery store. It is so easy to let our emotions lead us, when we should lead with our knowledge and experience, and facts that can stand up when challenged.
posted
geneal; good for you/hubby to be discusing your situation on the radio.
a suggestion i have is WRITING DOWN WHAT YOU INTEND TO SAY; read it off if necessary so it comes across with ACCURATE facts.
i did a radio show 5+ years ago on fibro/chronic fatigue before i knew i actually had chronic lyme for 30+ years.
i let my 3 brothers know i was doing this, and asked them to listen to it. they didn't; although 1 was at natl. guard weekend; 1 slept in and caught 5-10 minutes at end, and who knows about other one?
you could type up a list of topics you want to discuss and give it to dj.
best wishes on getting this together and speaking out for yourselves/many others walking in your shoes!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Whew.. Nancy..
Thanks for sharing the kind words. I REALLY don't intend to offend.
I honestly think I put MYSELF in the situation above and think how many ways I can "blow it".. and worry about others who might have to learn the hard way.
Also I know of folks who have done radio in the past.. and have NOT been happy with the outcome... as they were "ready" for it and prepared.. but were caught off guard when the radio interviewer totally left the script and asked off the wall questions.
I want so much .. FIRST and foremost.. to have it go well for those BEING interviwed. Otherwise we have a once bitten-twice shy situation... which helps no one.
I HOPE that is what I have relayed here. And the fact I am a hot-head when it comes to the ducks hurting folks... I know I have NO business doing this sort of thing (radio/live interviews)... as I can't seem to control my duck-kicking and foul-oriented BIG mouth!
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear TinCup,
If I do get the opportunity to speak on the radio, I was going to compile all of the documented facts
that I have re: Lyme disease and it's co-infections.
I am not at all offended by what you so gently stated re: contracting Lyme following Katrina.
The funny thing is that ANYTHING that is Katrina related normally gets top billing.
I planned on saying that I am not sure that this is when it happened for me, but that my outside living conditions for an extended
amount of time certainly did raise the opportunity for exposure. With all the trees down, leafy debris everywhere.
Plus we had a tornado come across our propery and we spent days just clearing a path to get to our house (which didn't survive the two huge
pine trees that landed on it). We raked, moved and hung out in that mess for 34 days!
We all also contracted Ringworm during that time. Who knows?
It is really a way in the back door.....I want to carefully construct my message to be one
that educates the public on what Lyme is and that it is HERE!!!!
My neighbors, (one is positive for Lyme, her husband is getting Igenex tested
this week following a negative LabCorp WB) have both expressed interest in doing the show with me.
That is if we get the opportunity.
I've also thought about getting some of those brochures on Lyme disease and putting them on the counter
at our local country store/gas station.
I am friends with the owners. I don't think this would be a problem.
Of course you know that if I do get the opportunity I would draw on all of your wisdom and advice on presenting.
The last thing I would want to happen would be something that negatively affects our fight against this disease
or discredits us as a group. I really just want to share the symptoms of Lyme.
Maybe tell my story and my struggle to find out what was wrong with me.
I would never, ever mention my LLMD (God forbid!!) or throw out information that I couldn't support or could be deemed as conjecture.
Good thing I did a research class in Grad School.
I really appreciate your input and advice.
If I find out anything, you guys will be the first to know as I couldn't/wouldn't do this unless
I had all my t's crossed and my I's dotted.
Every time I am in Walmart, I wonder how many people are in that store that are feeling as physically
sick as I do. I wonder how many of them probably have Lyme and have been mis-diagnosed.
Probably quite a few. Don't worry, I would never, ever mention Lymenet either.
Don't want any trolls around.....
In the meantime, I'll just keep plugging away like I do every day.
If I hadn't really talked to my neighbor and given her a list of Lyme symptoms and compared symptoms
she may still be under the care of an ID duck who thought she had Typhus.
I also believe her husband will be positive via Igenex testing.
He had a tick in his ear (embedded) about 18 months ago, and his ear was huge!!!
Looked like he had a head of cauliflower attached to his head.
Ten days of doxy was what he was prescribed.
If so, we may petition the local government to change the name of our little gravel road to "Lyme lane". (Just kidding)
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey G..
As always.. you've got it together! I smile!
You said.. and I LOVE this...
" I planned on saying that I am not sure that this is when it happened for me, but that my outside living conditions for an extended amount of time certainly did raise the opportunity for exposure. With all the trees down, leafy debris everywhere."
YES.. in that context.. PERFECT!!!
Also you pointed out the ring worm.. etc. GREAT addition! You all are exposed to MANY diseases and folks need to know it. I like the sound of naming several things together that are affecting folks.. even if Lyme is the proposed targeted topic. Adding the Typhus in there gives in a bigger .. hmmm.. a bigger... well.. more chocolate ice cream! I can't think of the word! Anyhow.. sounds good.
And I know I am SO bad.. but it wouldn't hurt MY feelings if you mentioned the duck misdiagnosed someone!
OUCH!!!
OK. Stop hitting me! My whole point was to be nice and very picky about details.... and look at me! BAD TINCUP.
So PLEASE don't do what I would LOVE to see done... tee heee heee... just do what I say! Boring.. but best.
And good idea on the brochures. I hope that works out. You know who is lacking on Lyme info? The park folks... wildlife folks. Seems they are searching for decent help these days. The ducks were suppose to be sharing info thru their ALDF attempts.. but I guess that was bologna.
You said..
"The funny thing is that ANYTHING that is Katrina related normally gets top billing.:
I guess that is true if I stop to think about it.. but so sad. It's sad about all the stuff that still needs to be addressed there.. and so sad for their even being a need this late in time to have folks still hurting for things.
If that made any sense I'd be surprised. What I am trying to say...
I am sorry about Katrina and the pain that has affected the lives of so many.
I do like your idea of naming the street Lyme Lane.
Actually I like it a lot! Maybe we ALL could send notes to our health depts telling them if they aren't going to DO SOMETHING about this awful disease.. then change the names of our towns, streets and drives.
I live in Tick City. Labcorp has taken over the court house. We shop at Babesia Plaza.. on the corner of Rocky Mountain Spotted Fever Street and Permanone Lane.
posted
Patients standing up, yes! Last Saturday our Mountain View Lyme support group told the truth to the state DPH rep and the 2 county reps.
The funniest example: there was a chart showing -- get this -- 12 babesia cases reported to the state in the past 10 years. So one guy stood up and asked how many in the room had babesia. 12 stood up. He said, "Fancy that. All 12 showed up here today."
And on Tuesday, many told their truths to the state advisory committee.
I personally like thinking of ducks as misters(and ms's) if they aren't willing to diagnose and treat Lyme/co's. It's a very particular kind of protest, to call a doctor a mr/ms, and say why. I don't see why we should call them doctor if they are not willing to doctor these diseases.
Posts: 13116 | From San Francisco | Registered: May 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear TinCup,
This is actually a funny coincidence. As my nosy neighbor was calling
everybody she could to halt the process of our rebuilding
she contacted the Department of Wildlife and Fisheries for the State of La.
Told them, as we live on a "scenic" river, that we were dumping debris in our river.
Of course they came out twice...found nothing.
This was prior to my Lyme dx.
My husband just spoke to them yesterday in Re: to submitting our mitigation plan to them so there
would be no question. He told them I had Lyme.
He has it too, but.....I am an easy, but eager target.
Their first question was had we been out of state.
Yes, to Tenn. for four months after living outside for 34 days.
You must have gotten it there. Well....maybe.
Did we mention our neighbor has Lyme and her husband probably does too. Being tested via Igenex next week.
They didn't go to Tenn. with us.
They are to come out next week. I am primed and ready.
I spoke with a fireman yesterday at Walmart. He noticed I was yawning continuously while waiting in line.
Talked about Lyme disease. Wow he said, been a hunter all my life.
I am allergic to ticks, he said.
Okay, I'll bite (no pun intended).
I always get this funny looking rash at the site where I've been bit.
It is kind of like delivering the coup de gras.
Anyhow, he was recuperating from ligament surgery to his knee. Lyme related? Maybe.....possibly.....probably.
I do like your approach.
When I speak to others of this disease, they want to know....how did you get it?
How did you know it was Lyme?
I always share my stories of "doctors" who refused to even test me for Lyme.
Funny thing is most people have someone in their family dx. with Fibro, CFS, MS......
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
just don, you could play headball..
Posts: 13116 | From San Francisco | Registered: May 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I checked with the local country gas station at the corner and they said
it would be alright to put some brochures or info pages on Lyme Disease there.
Any ideas on which brochures would catch the interest of us simple, country folk?
Or should I just make one up on my computer with a heading of
Lyme Disease is Here!!!!!
List the symptoms and such.
Any advice or suggestions are welcome!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Hi,Geneal!
LDA gives out free brochures. One for adults and one for children. You can contact them and they send them to you. In the past, I have carefully passed out boxes by leaving them in coffee houses,health food stores, outdoor supply stores,veterinarian offices, as well as parks and places of hiking.
I also know of another fine brochure written by a pt. in Pennsylvania...I will try and get you the information. TC, do you know how to get these??
Posts: 4258 | From over there | Registered: Jul 2001
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bettyg
Unregistered
posted
geneal,
BettyG's LYME/TICK BROCHURE with LDA info plus other stuff from Betty including: lyme books, support groups, lyme/co-infection illnesses, symptoms, diagnosis, treatments, hunting/gardening ... how to dress; how to remove ticks, etc. http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=045337
for your info, i retyped LDA's co-infection and treatment brochure into the above link i show above! it was illegible in times new roman and small print.
also, go to www.lymediseaseassociation.org and you can see the brochures from there. ORDER ABC's of LYME FOR KIDS; user friendly. i understand we can order a box of 500! i've only ordered 100 before so i'll order a box of 500 in future.
TICK CARDS ARE GOOD INFO; SHOWS ACTUAL SIZES! good luck to you geneal!!
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