NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Enough already ! Maybe I've had a bad week, maybe I've gotten one too many calls or e-mails this week from a newbie that's sicker than a dog after being denied a diagnosis or {God Forbid} treatment for the last years!
Maybe, I've just had enough of the BS that passes for medical care in this country. Excuse me, but where is it codified into the Constitution that the IDSA or any other stodgy, corrupt, conflict of interest riddled body gets to dictate how American citizens access health care ?
The IDSA's guidelines were a direct attack against the gains the lyme community has made, albeit small one's. Oh sure, we've got a handful of doc's nationwide that'll treat, a couple states they can actually treat in without fear of being drummed out of the profession but, 99.99999% won't touch us with a ten foot pole that's been disinfected on the end of it.
AIDS in the 80's, Gulf War vets, Vietnam Vets, Lyme patients, etc. We're all or have been in the same boat. Why ? It's going to cost somebody money and liability if they admit they were wrong. Period, end of story. We've based our health care on profit and not on lives and health and this is where it leads us.
We're signing petitions { I personally think it's useless}, we're writing letters to the Editors {which I agree with}, we're trying legislation [which I agree with on a state level}.
Maybe the federal bills will help but why can't they ignore us there just like the CDC did with the mandate to alert doc's about lyme treatments and diagnoses's ? The CDC is riddled with Pharma pawns and Insurance sycophants, it's a complete waste of time in my opinion.
We're bringing butter knives to a gun fight. The IDSA just passed rules that state they want you to die ! Did you read them ? It's a death sentence. They know long-term abx works, they've seen the evidence, they don't care. Money and ego are their masters, actually helping patients is soooooooo far down the food chain as to be laughable.
This is what we need to do. AIDS patients tried to play nice as well. But when they were handed a death sentence they knew they had nothing to lose ! Nothing !
When they pulled Jemsek's practice, which we ALL knew was going to happen beforehand, we attended court, showed our support, sat quietly with folded hands in our laps and anguished over the decision. The result ?
A ton of sick people no longer have a doctor, the Med board went home to their trophy wives and lame practices, the IDSA once more covered their corruption, and lyme patients were kicked to the curb and told to go home and die.
But, make sure you take a couple years of our pain, anti-seizure, insomnia, anti-inflammatory, steroidal, etc., etc., meds before you waltz off and die or kill yourself from the agony.
This is what Jemsek's patients should have done. Screamed bloody murder to the press or to anyone else who would listen before the trial. Kangaroo City folks.
When the verdict was rendered every Jemsek patient should have called the MD's sitting on that board the very next day and demanded an appointment !
"Look, you took OUR doc's ability to treat away so, you must be the freakin" expert and I want an appointment so you can CURE ME" ! Of course, this would never happen, because they have no idea what to do.
So, no appointment, everyone shows up the next day with a sign in front of this quacks office stating............"Dr. So and So wants me dead !" Think you wouldn't get a little press ?
Think he can withstand that kind of bad press ? Of course not ! It would ruin their practice !
Steere, Klempner, Shapiro, etc,. etc., ad nauseum, understand two things, money, and the fact that bad publicity destroys the money train.
AIDS patients figured this out in the 80's otherwise they were dead. When, in God's name, will the lyme community understand this ?
Maybe we can join the AIDS or GULF War Vets community, Lord knows we have common interests. How come we always have to play defense ? The best defense is a good offense ? Let's put Steere and Shapiro and the rest of these Mengele's on the defense where they belong.
By God, there's hundreds of thousands of us and a small group of them probably numbering in the double digits. This is a no-brainer, we're right, they're wrong. Lets's go ! Damnit !
OK, I'm done ranting. Let's be one. NP
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Rant on, NP! I was so glad to read your post. You voiced what is bouncing in my brain but can't get out through my fingers or mouth.
Wouldn't it be wonderful if anger was an antidote for Lyme!?!
I am so exhausted I can't muster anger most of the time but when I read something so succinctly put I have to say a big THANK YOU!
What energy I have is mostly used up worrying about my daughter and grandsons who are ill. And I guess the rest is used up in feeling guilty that I am too sick to help them much.
Support systems? No extended family, no TN LLMD's, no doc to prescribe ABX, no friends left. Example: got an email from my daughter's best and longest friend today saying that "frankly I am tired of hearing about how sick you all are."
Don't expect compassion from ducks or insurance companies or drug cos. but crappola....
This "friend" is a new attorney living in LA with MANY connections and I was trying to make a plea for some guidance or help in "getting out the word." If she is tired of hearing about our situation, what hope do we have with strangers?
At least there are a few like you who can yell the truth and maybe some stronger than me can DO something with it!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I couldn't agree with you more, NP40. Tried to do a little rabble rousing here (ok, a lot) to a resounding lack of interest. What is the matter with people that they will not fight harder for their own lives? NC lymies should have pulled out all the stops, in my opinion.
Posts: 8430 | From Not available | Registered: Oct 2000
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
NP40, Couldn't agree more with you.
Regarding Petition you know my opinion, Tincup. (I know you are doing the best you can though) At the end of November we will have likely ~25000 signatures but LDA is not going to use anything less than 50000 as we heard.
In the meantime IDSA stands strong and has already rejected retraction of the questionable guidlines.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
there's hope now, guys!!!
we gotta fight harder than ever, now that we finally have people in office who will listen to us!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Regarding Petition you know my opinion, Tincup. (I know you are doing the best you can though) At the end of November we will have likely ~25000 signatures but LDA is not going to use anything less than 50000 as we heard."
No, No, No.
I've NOT heard they won't use anything less than 50,000. NEVER!
I know the GOAL is 50,000.. but never did I hear anything less is a waste or wouldn't be used.
And PLEASE.. remember this...
These calls to action are steps on a ladder.. leading up to bigger and better things. They are laying the ground work and MUST be done before we get anywhere.
Now... unless you have a better plan... and are willing to DO it.. not just talk about what so and so should have done...
PLEASE help with these projects for the benefit of all involved in this living nightmare.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I am only worried that things not going that fast as I want them to.
Regarding petition I have done my decent share collecting close to a 100 signatures (these are people I know). + have notified some discussion boards known to me that would potentially help.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Areneli.. if I sound irritable.. it is because I am. Not feeling well. Sorry. Not directed at you, not in the least.
I KNOW the wait is hard.. and the little bits that are being asked of us don't seem all that big. But they are.
I will NOT be presented with the Golden Gab award if I were to release info now... and I do believe somewhere, someone threatened my life if I were to unzip my lips.
And it's killing me!!!!! My head wants to explode!
But hang in there.. please everyone do what you can to promote the Call to Action Alerts.. and know we will be seeing/sharing the progress.. REAL soon!
posted
Cave, thanks for your 10 yrs. experience here on the board having seen/done that over the years. We just can't give up and die for them.
As Harry Truman said, "Give them hell!" and don't back down...Bettyg on the end!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Cave..
How is it you've been here so long with THAT kind of talk? So my head exploding wouldn't make enough mess to be worth cleaning up, eh?
HA!
Fine friend you are!
I know you.. as I have been here a little while too. I will guarentee.. when the news is released.. and after you have had time to absorb it all.. which MAY take a year or so... but hey.. we still love you...
I am SURE you will be skipping across the duck ponds. It WILL be the best news you've heard in years.. if not forever.
posted
I was wondering why the "Lyme disease through blood transmission" route isn't approached, namely, contacting the Red Cross top brass. Maybe this will spread like wildfire. It's worth a try, don't you think?
I've also written this before: Oprah must be contacted because when she speaks, the WORLD listens!
How many times have books, items, ideas, etc. been promoted on her show and they took off like wildfire! I know people keep trying to go this route.
Posts: 8981 | From Illinois | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
we've tried oprah so many times...for years...she s afraid of controversy i thingk. easier to help little girls who are very far away than here.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bettyg
Unregistered
posted
today, we have a tv producer join us, our latest member as I type this.
i asked him what types of shows he's involved in.
i've lost the use of my left hand so capitalizing is too painful so my posts won't look the same and will be very short; too painful!
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
OK, Tincup
It's been three more days since you said wait three more days in this tread (to get happy)....
I can't wait. I definitely need some happiness.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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