Lyme Disease and Personal experience topics

I found out yesterday from one of my support groups message boards that Karen Allen has Lyme Disease. For those of you that don’t know, she was in Indiana Jones and Superman. She made a radio appearence promoting a thing called, “The Ultimate Zapper.” She claims it can cure Lyme Disease. I find it hard to believe, but to each his own.  What really made me mad was that this celebrity has Lyme Disease and doesn’t promote and raise awareness about it enough. Lyme disease is usually musseled by the media and having a celebrity talk about it would really help us. Shame on her for not talking about it. She does a one time appearence on a low budget radio show, that barely anyone listens to and thinks she helping?!

Look at Jenny McCarthy with Autism, she has been a pioneer for it. She has gotten it out there in the media and raised awareness about it. It just makes me so angry because for the rest of us it’s hard to get Lyme Disease out there in the public and media. If I had that celebrity I would be talking about it all the time in the media and trying to raise money for it.  I wish I could shake her and say please help us! For those who would like to send a polite and respectful letter to her asking for help, you can contact her through this email. karenallenfiberarts@gmail.com . Please, Please be polite. We would like her to help us with Lyme Diesase awareness.

Her Radio interview

http://www.phiyakushi.com/miracles/audio/20100523_Karen_Allen.mp3

Take care Lyme people and lets make a positive difference in the world.

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Thinking lastnight on how I want my life back. Before Lyme took over my body I used to be very smart and had a little bit of a photographic memory. Now I can’t even remember what I had to eat yesterday. I want to finish school and do alot with my life. It’s just not fair how life works out.

Hopefully this medication will improve my life. What if it’s just a little bit and I’m stuck like this? These negative dialogs in my head are not useful, but it’s hard to stop them from seeping into your head. It’s hard to be stuck in limbo, which alot of Lyme people understand.  Then on top of it, we get called crazy or depressed. I just wish I could think of something to get chronic Lyme Disease recognized and the process of getting a cure going. Sigh. Dare to dream.

Take care my Lyme people and hang in there. This disease sucks but we will fight it.

So the IDSA finally reponded. They denied everything, which is not unexpected. I’m still sad by there continue efforts to block Lyme advancements. This is another slap in the face, but one day they’ll be known as the black cloud over Lyme Disease. Here is there full response.

http://www.lymedisease.org/news/touchedbylyme/idsaresponse.html

Take care Lyme people and keep fighting.

Lyme Disease

I remember saying what should my general topic be on my blog page. Little did I know, it revealed itself to me months later. I have been very sick for the past 8 years and could never figure out why. My condition has been deteriorating over the years and leaving me frustrated. After yet again another blood test and meeting with a specialized doctor, I’ve been told I have Lyme Disease. It’s finally good news, yet also sad. It makes me shake my head at the medical community. I’m finding out very quickly that doctors are either closed minded, no nothing about it or are too afraid to treat it because the risk of losing their license. The IDSA has biased and self serving guidelines that if any doctor goes against it, they can be reported and lose their license. The amount of censorship that the IDSA is doing is amazing to me. If they spent half the time putting this energy towards research, we would already have a cure and more public awareness.

I would like everybody to watch a documentary for me. It gives a clear message about what Lyme disease actually does. Go to http://www.hulu.com and type in “Under Our Skin.”

There is also a protest on the IDSA’s facebook page right now. Please go to it and ask them to change the guidelines on Lyme Disease. http://www.facebook.com/IDSociety/posts/357764004239867

There is also a petition on helping Lyme Disease Patients. Please sign it!

http://www.change.org/petitions/subjective-symptoms-after-treatment-of-lyme-disease

Stephanie

 I’ve never wrote a blog before, nor have I been an A+ student in english writing, but I like reporting things.  The only problem is I don’t know what the theme of my blogs should be. WordPress asked what’s my theme, but do I really need one.  I realize I’ll probably have a thin audience if I talk from UFC fights to Pride & Prejudice.  Narrowing my theme a bit might be good. I just don’t want to be stuck talking about one thing 24/7.   I’ll get bored, as will you. I’ll keep thinking about it. I just wanted to think out loud and to say hello. Take care!