Although I didn't know Deanice Hinton, I had so many mixed emotions when I read the post of her passing. Mostly, I felt angry and helpless. The absurdities of this disease baffle me every single day.

Anyhow, one of the thoughts that popped into my mind was: isn't too bad that we don't have a big brother watching out for all of us. Then it occurred to me that we do, they're just not doing their jobs. At least that seems to be the impression when it comes to lyme disease.

For example, the CDC were the ones who diagnosed my illness in '85. It had been sent there because the hospital I had been admitted into didn't know what I had.

Doesn't it stand to reason that knowing what they know about LD that they know I'm still sick? Isn't there any responsibility on the part of the CDC to inform me sometime in the past twenty 20 years of the complexities of lyme? Am I missing something? And, not just me. How many others do the CDC know about? What exactly is their role and their responsibilities? DISEASE CONTROL? What am I missing?

Any chance of class action suit for this kind scenario?

I had a blood transfusion in the '80's and had received a letter in the late 90's stating that the blood may have been infected with Hepatitis C and that I should have myself tested for it. Why haven't I received a similar letter regarding Lyme from the CDC?

Just thinking...
paisley
 

[This message has been edited by treepatrol (edited 28 December 2004).]
 

I was a reporter and writer prelyme and have been talking to a friend of mine who is a terrific writer. I would do it myself but I am too sick. We have talked about doing some kind of expose. What about Primetime Live, supposedly they are doing more investigative reporting "back to their roots" kind of thing. People have to know about this.

For example, woman who wrote Seabiscuit, said to have chronic fatigue etc, etc. Diagnosed at stupid Johns Hopkins. The woman has lyme disease, my symptoms exactly.

Legislators only do something when the public demands it; it is publicity we need. I feel like we are the AIDS victims of the early 80s.

We need to open our mouths and start screaming. Would we lose out doctors if we did?

Someone with more brain cells than I, please explain this to me.

Thanks, bad morning, feeling crappy and furious.
Lymelady

 

1. Paisley, have you listened to the hearing in CA on reporting and dx of lyme disease?

2. I recently read a post about a project the people with CFS/fibro are doing.

I think it was called the million letter project. They had a list of the people they were writing letters to by a certain date in order to help with the awareness and to hopefully get help.

I thought it was well done and thought we should do the same.
 

Eventually, I hope they will come to realize that there are other diseases.

Differant groups in the US demand a "cure" for AIDS. And the CDC doesnt seem to want to stand up and declare loudly, "no virus has ever been cured. Ever."

Intellectually I know some of the answers. But day after day I'm racking my brain trying to figure out how we can get some more leverage. I am so impressed with all the lyme advocates are doing and have accomplished so far. Thank you so much for your work.

Aside from the fact that the CDC knows about my case the other reason I'm a bit irritated is that when my dr. asked me where I thought I got my lyme I told him it was after I was on Plum Island. He whipped his head up while taking notes and said, "are you sure about that - I didn't think anyone was allowed on that island - you know what is there right? I know now.

I want to throw a good old-fashioned lyme temper tantrum. I just don't know where or how to direct my anger and energy?

I've had so much taken away from me, but I don't want to operate from a position of fear anymore. Actually, I've done that for as long as I've had this disease because I naively put so much of my trust in ducks.

Anyone reading (especially newbies), don't take what i'm about to say the wrong way. I am fighing this disease as hard as I know how. However, without trying to sound pessimistic I know that realistically the next big infection that I get might take me out. I've already had three close calls. I'm a feisty one, but there's only so much my body can take at this point. Twenty years and too many serious complications. But having said that ...I also believe in miracles.

I WANT TO DO SOMETHING. I feel as though the only way to get some of my power back is to actually do something proactive about this disease. I don't know what to do from this bed. I can write. I have a degree in video production. If I had the money I would do (write/produce) another documentary. But I would need an angle. I know there are books out there. Haven't read any though. I need ideas. Any thoughts? It's such a good Hollywood movie.

very pensive
paisley

 

There have been a few movies made where a character has suffered from agoraphobia, obsessive-compulsive disorder, etc., etc., and they've angered me more than anything else.

Yes, good that those disorders have been put 'out there', but bad that they've been tremendously downplayed.

Two movies come to mind - "As Good As It Gets" with Jack Nicholson, and I can't remember the title of the other starring Sigourney Weaver.

Jack N. plays a man suffering obsessive-compulsive disorder and at the end of the movie - because he's found true love - suddenly doesn't have to avoid cracks in the sidewalks anymore. *POOF* - cured! All in the name of love. He just needed someone to love him. ***gag!***

In Sigourney Weaver's movie she played a woman suffering from agoraphobia. A mystery novel writer whose being stalked by some crazy person. In the end she bolts outside of her condo and suddenly *POOF* - cured! ***gag!***

Those two movies in themselves put a terrible dent in the seriousness of those two particular disorders. What a convoluted message they sent to the public.

It would be no different with Lyme. My sister is a Hollywood screenwriter currently working on a screenplay for Ms. Kidman's next movie. Through her, I know the Hollywood scene too well...more than I want to know about it and the people who run the whole crazy scene.

Michael Moore. Oprah Winfrey. Primetime Live. 60 minutes. Those are the targets to shoot for. But how?

Okay, so this is a bit off-topic, but a post I felt compelled to write since Hollywood was mentioned and all that Hollywood would accomplish for us is to dig us deeper into a the hole we're already in.
 

My daughter's friend once wrote Oprah about her problems concerning the need for a man in her life at all times. She got a call back from the show.

so go figure.

What you need a a well presented article that explains all the hidious things and then asks questions:

Medical communicty ignorance
Awful testing proceedures
Frequent misdiagnosis/agony of getting diagnosis
Difficulty of finding docs, travel far and wide to find them, most of us sick and poor in this process
Mainly why the docs must "covertly" treat us

Even piece on Today show did not give the name of the doctor who cured woman with his treatment, WHY?

Also and most importantly, this disease is rampant and many folks are walking around sick with it and do not know it, taking gross drugs for a disease they do not have.

Tree patrol, I would love it if you could e-mail me with some info. you sound like you know more than many of us.
[email protected]
Thanks
Lymelady