posted
I was up all last night trying to think of some way to get info on what we deal with on a day to day basis, and came up with this idea. Oprah, Tyra, those tv talk shows. (Classy ones not Jerry Springer). The more people know what's going on, the more questions will be asked, and I'd love to see what Pallone will have to say to that. Also, I think it will be a great way to get some famous people to know about our cause and take it up.
So basically what I did was sent storie ideas to Oprah, Tyra, and Ellen. Gave them my history with Lyme, and what the gov't isn't doing. Below is what I sent. If enough people send the same storie idea in, the more likely one of them will do it.
What I wrote: I have been diagnosed with Chronic Lyme since 1993 probably had it since 1991. I was diagnosed with Lyme Menengitis. The doctor that finally diagnosed me with it said I had it for at least two years before I was diagnosed. My white blood cell count was over 200.
Within the past four years I have been in relapse, (who knows maybe even longer), and the doctors where I live are uneducated when it comes to Lyme. When I tried to explain it to them, they treated me like an idiot who is simply a hypochondriac.
Two years ago, when getting up to go to work, I fell straight to the ground. My wife forced me to go to the hospital, and I eventually lost all strength in my legs and I can no longer walk. The first time I went to the hospital before this incident, they took my bood work and gave me antibiodics. When I went back a week later after this happened, they lost my blood work and wanted to take it again.
I told them they needed to take me off antibiodics for that otherwise they'll get a false negative because of the anitbiodics. Again, I"m an idiot and don't know what i'm talking about. Of course it came back negative, and they did all sorts of other tests.
Eventually they said I had Conversion disorder, (basically you're so depressed your mind subconciously makes these symptoms up as a way to deal with that) Never mind the fact I was about to get married in a year and I loved my job.
I tried to pull up information on the web for them, even showed them my Aunt's book on Lyme, "Coping with Lyme Disease," by Denise Lang. One doctor went so far as to say I should go see her then. I told him no she's not a doctor but an author.
They discharged me in a wheelchair with no treatments, and almost a year later I finally get them to redo my bloodwork. Surprise of suprises it came back with antibodies for Lyme. Great! finally the proof I need, they can't deny it now!
My doctor tells me it just means my body has built an immunity to lyme. You can't build an immunity to lyme, hence the reason you can get reinfected! I tried to tell him this, but no again I don't know what I"m talking about.
It's sad when the patient knows more than the doctor, doctors who are not willing to learn about it at all because of medical insurance.
There's a bill which is supposed to be going through Congress right now to essentially set up a Task Force to research this disease, and find definitive tests and proper cures.
Yet, Representative Frank Pallone has given the IDSA control over this bill. A corporation who is corrupted by insurance companies monies. Who has given out out most of the Lyme research monies to IDSA researchers and now is being paid to direct their organization, American Lyme Disease Foundation, a government mouthpiece whose advisory board consist of many IDSA guidelines panelists.
I am not going to let this disease stop me from living my life. I am forced to go to school online to be a Pastor since the school I was going to is not wheelchair accessible. The only way I am going to see treatment of this disease is if this bill gets past. The only way that will happen is if enough people find out about this disease, and Pallone is in essence shamed into putting it through congress.
As it stands now, LLMD's are not covered under insurance (which is my only way of affording medical care), and in most cases they are persecuted out of practice. Recently a doctor who has been treating children, and improving their way of life had his license suspended for prescribing antibiodics to two children for Lyme. All over a custody battle.
It's gotten so bad you can't even publiclly mention LLMD's names for fear of them recieving reprisals for their work.
I am not the only person suffering from this disease, there are thousands in the U.S. alone who suffer and die. This is the A.I.D.s epidemic of this generation. The sad thing is proper info can prevent this disease from spreading.
Thousands of Americans (including outstanding numbers children) are suffering and dying from this disease, and the government is doing nothing to stop it. Info on this disease needs to get out, if not simply to help prevent others from contracting this disease. This is a worldwide epidemic which needs to be nipped in the bud.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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bettyg
Unregistered
posted
SLAPPY, NICE TRY!!
we've been trying oprah for years; also larry king live; montel; and other talk shows.
if you want to help, please go to support and click on PRAYER S FOR ALICE by her uncle mikej!!
there is a link there to contact OPRAH for doing a show on alex's cricial condition at age 14 !!!
please follow the instructions; oprah's staff person has contacted mike's sister, lori/mom of alex TWICE so it looks more promising but NO MORE NEW SHOWS UNTIL SEPT. 08 !!
if you stay in ACTIVISM ALONE; read down page by page of what/who we have attempted to contact.
groovy jay also had something going with CBS...
there is ONE tv show still be aired 1.5 years after they finished it, and keep getting told it will air so and so date; canceled last minute!
thx, and keep up the activism; have you clled congress' 3 phone nos; they COUNTY EVERY PHONE CALL WE SEND!
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I'be been trying to look at what's been done, it's alot to read.
I'm actually pretty positive though about the Oprah show, my Aunts been on the show twice already, and I mentioned that in my letter to them.
It wasn't for her Lyme book, but I mentioned her book, and I know Oprah likes to promot books, so... (cross fingers and pray)
Anyway, like I said, if enough people email her with their own personal stories it will more likely get on, because they'll see how many people it's affecting, making it a more important show.
Personally I dont' think it matters who gets on the show, as long as someone who knows what they're talkig about gets on. The most important thing is the information gets out.
They'll want to do a show that's affecting alot of people. It doesn't hurt to bombard them with our stories.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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