Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sometimes the wind blows just right and I hear about things going on in the background that are NOT what YOU need, much less want.
And the REALLY sad part... the frustrating part...
It is coming from people who are supposedly respresenting themselves as doing things "on YOUR behalf"...
These are people that sell themselves as being FOR the Lyme Community, but who have lost their way for whatever reason...
And they are now, without telling you, AGAIN attempting to make dangerous deals with the Devil behind the scenes that can hurt all of us.
They are the ones constantly crying that we all need to 'work together', yet they keep their plans from you and stay under the cover of night until exposed.
Some of them have sided with places like the CT DOH in the past to help PASS the more stringent reporting criteria, while the majority of us were out there protesting and fighting the more restrictive wording.
Some have gone to legislators and tried to undermine our federal bills and some of our state bills in the past, some hoping they could get their own bills in instead. Glory hounds.
Some have tormented ILADS and tried to have the ILADS President tossed out on his ear... demanding his resignation.
I could go on and on... but you get the picture.
I feel so bad for patients that want to know why we can't move forward any faster to get them and their families help.
THIS IS WHY!
Not only do we have to fight the BIG IDiots....
But we are burdened with having to address people within the community and try to keep them from destroying what we are all working so hard to accomplish.
Every minute the advocates have to deal with the garbage within is less time we have to work on making progress.
I wish they would stop trying to make deals with the devil and stop with the sneaky stuff behind the scenes.
People are suffering while they are playing these evil games.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh.. and I will be exposing each and every behind the scenes plan and person I come across from now on... so YOU will know what the real deal is.
You deserve to know.
This is YOUR life and anyone supposedly "representing" you should have the decency to tell you what they are doing.
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hi Tincup. My early education in lyme disease (Fall 2002) was from one such person stirring up bad feelings....although this person was brilliant and had her facts, this person was hell bent on stirring division in the lyme community.
I tried really hard to get this person to drop the divisionist mentallity, and I ended up getting run over by a Big Mac truck. It was brutal and ugly.
Good luck Tincup. I know these people are out there,and the dirty work of exposing such things has to be unpleasant....
Not sure exposing it all is the best thing for the lyme community either though. Would that be airing our dirty laundry to the outside world? .... When we are trying to look "legitimate?"
That would be my only concern, and for you as I know first hand how unpleasant this can all be.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Please tell instead of just talking about telling Posts: 526 | From NJ | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey wreck....
You said... "I ended up getting run over by a Big Mac truck. It was brutal and ugly."
I am so sorry that happened. It can get VERY ugly, you are right.
And it doesn't NEED to be that way, which is why when it is, it is so horrible for so many.
And I agree, that exposing the "ugly" can be risky...
But then again, not exposing it allows it to go unchecked and it allows for innocent folks to be duped... or as you said... be run over by a Big Mac truck.
I've seen some wonderful people be run over and because of it, drop out of the patient advocacy volunteering they were doing.
We need people to help, not be battered and beaten into quitting. I've seen hundreds and even thousands of hours of work get flushed because of "ugly" acts and "ugly" people.
Each time this happens... our kids and our families ... and WE all suffer for it.
So yes, it is a fine line... and I wish and pray for guidance through this "ugly" stuff ... for everyone's sake.
But I am also bummed out by how it continues no matter what we do and how it destroys so much progress for so many.
I am tired of the complaining that we aren't moving forward.. and patients NOT knowing the real reasons for some of it.
BTW- In my opinion, we have moved forward quite nicely over the past few years. I actually see a good deal of progress being made.
posted
Are you talking about the discussion on Lymenet Europe called:
Heaven Forbid they Propose a Bill Backing REAL Research....
in their Lyme Cafe? You can read it without being a member.
Posts: 365 | From Sylvania | Registered: Aug 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey ***...
You said.. "Please tell instead of just talking about telling."
Ok funny man, let's start here, remembering this was YOUR idea!
Do you recognize any of these schools, ***?
Millington Elementary School Rock Hall Elementary School Worton Elementary School Kent School Chestertown Christian Academy Kent County High School Chestertown Middle School Galena Middle School Rock Hall Middle School Henry Highland Garnett Elementary School Echo Hill Outdoor School Radcliffe Creek School Washington College
Or maybe these towns?
Fairlee Lynch Kennedyville Massey Still Pond Tolchester Beach Worton Betterton Chestertown Galena Millington Robinson Rock Hall
Or maybe you know some of the 20,000 people who reside in that very rural and highly endemic area? Many are Amish and Mennonites and most work outdoors. Sound familiar?
NO, you don't them? Well...
They are located in an area that is so bad with Lyme and TBD's that some of the first studies were done there on children in summer camps.
It is so bad STILL that researchers continue to go there to "study" these people and do deer tick surveys.
Actually, it reminds me of the infamous Tuskegee experiments because the treatment and education is not getting better, but the studies are many.
They have very few doctors and only one small hospital that serves two or three counties.
The way they treat Lyme is to follow the Hopkins approach and use the "one pill" theory when someone appears in their office with a Lyme rash. Some lucky ones manage to get 2 weeks of doxy if they are very very ill at the time.... and I've noted a couple of people actually got the full three weeks of IDSA treatment.
And if they remained ill after that treatment, well, this area is pretty famous for their "steroid" approach for chronic Lyme. I've had several calls just in the past few weeks concerning this specific problem.
The people are scared, they are sick and are dying. They have asked for my help because there is no one else that can/will help them. It breaks my heart.
I've actually tried educating doctors in that area years ago when I was able to get out and about more. Went to the offices with patients who were too sick to speak for themselves (on their insistence), left literature, books, video's etc. Even helped with a few programs here and there.
The doctors were not receptive because the ducks were steady telling them differently. Why would they want to listen to a nobody like me or these other sick patients begging for help?
They didn't.
At the time, the doctors had never heard of Babesiosis, Ehrlichosis, Bartonella, etc. which is so sad because people there are not only suffering from these diseases too, they are dying. Look up the obits and you';ll see the latest one... a mother of small children.
*** entire families there are sick and they have no access to adequate help. Many are living below the poverty level and many don't have insurance.
This is where YOU come into the picture, ***.
From what I understand... you learned about the very first article EVER to go into their local newspaper about Lyme disease, one that would hopefully be seen by these residents, teachers, nurses and mothers of children that go to those schools ....
As well as, be seen by the doctors with their one pill theory and their steroids.
From what I understand.... you actually took time to look up that newspaper and contact the editor with the sole intention of trying to cast serious doubts on the articles content, focusing especially on the one quote at the end that happened to be by me.
From what I understand... the editor wrote you back telling you he sent your note to the article's author.
From what I understand... this was just part of YOUR attempt to smear me. Part of a campaign (of what, 3-4 people?) to post my name on a website so many times that those looking up my name would see a bunch of trash rather than anything worthwhile I've done in the past 20 plus years as a volunteer.
So let me ask you this, ***....
Do I even know you? Have we ever met? What is it that I have done to you, ***, that made you do something so destructive and hurtful to people in that area?
Do you think educating or helping people in general is a bad idea? Or do you just hate the people living there for some unknown reason? Or do you just hate me enough to let others suffer and go uneducated?
Did you know that several patients have tried to get information in that paper for years and years on end with no luck?
Do you know we were finally able to do so, and within a few days you tried to smear that effort- rather than just leave it alone or heaven forbid, thank the paper for finally educating their residents and encourage them to do more?
***, if you don't want me or these other volunteers educating these sick people, we have a stack of "Things To Do" here that we would be glad to send your way.
And I promise I won't run around hanging on your coat tails, biting at your heels and trying to interfere with your efforts.
Deal?
BTW- You can start RIGHT NOW educating and supporting them. I got another call earlier from a grandmother with two sick grand babies wanting to know if her precious darlings could have possibly been born with Lyme-
Which is what prompted me to ask you about your deeds today when I was trying to just let it go.
She said her entire family has been sick for years and the only thing they've had in common is bites from ticks and Lyme disease. She cried. My heart broke.
Shall I tell them YOU will be responding to their pleas for help?
[ 12-17-2009, 08:31 PM: Message edited by: Anna Lee ]
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
After reading what you wrote, TC, sounds like genocide to me - and anyone who is able to get to a doctor and get treated is privileged. I think we all need to think about how we can help others, in whatever small or large ways, who are stuck in this mess.
And you need a monument somewhere - maybe with giant ears, mouth, heart and some typing fingers? - Posts: 13116 | From San Francisco | Registered: May 2006
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Thank you for sharing this Tincup. It's disturbing to say the very least. It makes me sick. I don't even know what to say.
These doctors and people who know about Lyme and any other disease that just let this slide under the carpet or act like it doesn't exist will have a sh**load of death and debilitation to answer for someday. I'd hate to be in their shoes.
Posts: 50 | From Midwest | Registered: Nov 2009
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I think one of the first priorities needs to be research into the transmission of Lyme through the blood supply, intercourse, placenta, breast feeding and other insects besides ticks. Can Lyme be aerosolized?
Is ANYONE funding this type of research or do govt agencies, which are integrated with the medical industrial complex... discourage it?
We can educate about the symptoms, how to treat it...etc(that's all important) but if we don't curb the spread of Lyme, it's like bailing out a rapidly sinking boat.
Posts: 1176 | Registered: Oct 2002
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posted
Hm - I've never heard of Lyme being aerosolized.
And there's also all the other co-infections as well. Can they all be passed via fluids and tissues?
Posts: 13116 | From San Francisco | Registered: May 2006
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
This is the document where I first heard of the possibility of Lyme being aerosolized and perhaps being a threat if it was. I believe they are speaking of accidental spills here....but it makes you think.And it also infers that Lyme was worked on in the Lab before it was supposedly identified in 1982
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Tincup - I completely believe you. I've experienced this undercurrent many times and most recently, my friend experienced it at a State and even Local level. In the last case, it was withholding info. re: tx availability in State. Some is personal bias and other is ignorance. Can be difficult to tell which unless you know the personalities you're dealing with.
If you care to share specifics re: Texas, please contact me at : [email protected]
All others sending email to this address will be deleted without opening.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
My guess is Rad wants to wiggle away from it?
Anyhow...
Is it at all possible people claiming to represent the Lyme community could stop hiding behind the scenes and making deals with the devil?
After all, if the deal was a good thing... we should all be made aware.
Again I hear this is NOT happening! A handful of people are screwing up stuff and that will negatively affect us all.
And doing it through the docs who don't know better? What sneaky snakes.
When lives are at stake.. this garbage totally sucks!
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