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Old 10-17-2007, 08:49 PM   #1
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Returned from first Lyme Support Group

After 24 years, I finally got up off my duff and reached out into another direction. I spent the eve talking to all types of people listening to their stories and also sharing my own.
With the recent headlines in the Hartford Current "No basis for chronic Lyme" I found myself feeling furious and I think that was the last straw to give me enough of a boost to get out there and start talking to people.
We are working on a demonstration in the next two weeks. Even though I have my kids, I still plan to bring them with me and even help me hold up signs.
I feel this is a new beginning of something and maybe this is what I need to help me get through this time in my life.

 
Old 10-17-2007, 10:43 PM   #2
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Re: Returned from first Lyme Support Group

Awright Rodney!!

I am so glad to hear you went and you are motivated to get out there and do something.

I can't WAIT till I feel good enough to use my energy for spreading the Lyme word and protesting these ridiculous articles and testing protocols.

Knowledge, knowledge, knowledge - that's what I'll be spreading.

The most I can do right now is spread the word casually. I wear a white cover over my PICC line and when I'm in line at the grocery store or some other place, someone usually asks what happened and I'm happy to share my story.

The question is usually "Ooh, what happened to your arm?" My reply is "I got Lyme a few years back and I'm currently on I.V."

I am amazed that each person I speak to knows someone who had or has this disease. Sad sad fact.

Keep fighting Rodney. Someday, somewhere, me and my kids will be right next to you - holding signs and fighting for attention to a disease so that others don'thave to suffer like we have.

Kudos to you!
Mickie

Last edited by 6Blues; 10-17-2007 at 10:45 PM.

 
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Old 10-17-2007, 11:08 PM   #3
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Re: Returned from first Lyme Support Group

Hi Mickie. You are up late!


Tonight, that was actually one of the things we discussed...When I am at the grocery store, someone always asked why I am buying 14 bottles of hydrogen peroxcide...comments range from "Are you making a bomb?" to "Are you a doctor?"
When I talk about it, everyone either knows someone who is struggling with the disease or they themselves are.
I need some ideas for my sign..and some good ones for my kids.
Let me know if you have any ideas!

 
Old 10-18-2007, 05:44 AM   #4
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Re: Returned from first Lyme Support Group

Rodney, I think it is great you went to a meeting. It can be very comforting to be with other who are going through the same thing.

 
Old 10-18-2007, 06:05 AM   #5
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Re: Returned from first Lyme Support Group

A sign hmmmm...something like ...'TICKED-OFF and I'm not going to take it anymore...." hehe...

Rodney I think it makes each and everyone of us feel good when we can get the word out...GOOD FOR YOU! I agree with you...I think this is going to help you fight harder to get well. I hope I see you on t.v. picc and all!!! Shouting..."Kick those Lymies Butt's" I am very very happy and smiling after reading your post that you are out there mingling again...GO RODNEY GO!!!

Hugs to you...keep us posted on activities you do okay...

Big soft Hugs coming your way!


 
Old 10-18-2007, 09:28 AM   #6
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Re: Returned from first Lyme Support Group

Thanks jo and ticker.
I plan to wear a short sleeve shirt no matter how cold it is, exposing my unsightly picc line, with a sign that says "Ignoring studies of clinical failure to irradicate-relieves insurance responsibility."
And maybe I'll have my four and eight year olds hold signs that say "You're hurting my dad."

Last night I thought I was the one who was going to be supported, but found the opposite. Many people taking notes from what I had to say and asking for my phone number. I felt somewhat guilty because I don't have all the answers, I'm just struggling along too, but these people are all just starting. One woman actually asked me if I would take her to NY to see Dr. R because she is so overwhelmed by the city. And I actually told her I would.

There were also photo copied studies handed out last night. One of which document when the bacteria were treated within seven of infection it was irradicated with IV rocepin, but with exposure over the seven days they were unable to irradicate in mice. This is just seven days! Not even considering all the people that have been misdagnosed for many months and years.

Additionally, there is no mention with regard to the complications caused by co infections which are so common with Lyme infection. Dr. F" from what I know has not even addressed this whole entire other issue. I'll have to research this further, later on to breakdown exactly what he states word for word.

This just can't go into the books of all insurance companies and give them the excuse to desert us all when there is such and obvious need for compassion and facts that are already available but are being ignored for no other reason but to increase the bottom line for insurance companies.

 
Old 10-18-2007, 10:02 AM   #7
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Re: Returned from first Lyme Support Group

Just in five minutes of research I learned
Dr. "F" reports receiving lecture fees from Merck and serving as an expert witness in medical-malpractice cases related to Lyme disease.

This type of business could only explain why someone would take such a stance...Much more research to do in the coming weeks for me.

"Who will be happy with the results of Dr. Feder's study:
- Big pharma (like Merck) whose drugs patients use to treat but not cure a disease.."

That's seems to be what it is all about...If they can pay a highly regarded doctor to side with the pharma company's misdiagnose and treatment for ALS, Parkinsons, Lupus, depression, etc keeps the companies wealthy.

- Insurance companies - Lyme is one more disease that they do not need to reimburse for..

I'd like to find out if doctor F is also being supported through the insurance companys for his influence.

 
Old 10-18-2007, 07:22 PM   #8
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Re: Returned from first Lyme Support Group

Rodney,

I'm also ecstatic to hear about this. I know in my case, I've decided to use this horrible experience for good. I'm going to go to nursing school and nurse practitioner school. I'm actually already enrolled in one of my prereq courses and it starts Saturday!

I think that having a purpose and being able to help others is the only way we can all stay sane.

I'm so proud of you and know that God can use your experience to help others. Keep up the great work!!!

 
Old 10-18-2007, 08:47 PM   #9
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Re: Returned from first Lyme Support Group

I too want to redirect into the medical field as a result of this experience. I just have to figure out how and when and what exactly I want to do so I can feel "good" about what I do.

I think its great that you are in a position and feel well enough to study!

 
Old 10-19-2007, 01:38 PM   #10
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Re: Returned from first Lyme Support Group

I always wanted to get a shirt with "Ask me why I look drunk" written on the back.

On back-to-school nights my kids could wear a shirt that reads "Ask me where my mom is."

I anticipate a proud arrest in my future for civil disobedience for handcuffing myself to the doors of the CDC or ILADS in order to draw attention to the desperate moves Lyme patients are willing to go through to get better.

Peace and health to all,
Mickie

 
Old 10-20-2007, 04:30 AM   #11
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Re: Returned from first Lyme Support Group

Quote:
Originally Posted by 6Blues View Post
I always wanted to get a shirt with "Ask me why I look drunk" written on the back.

On back-to-school nights my kids could wear a shirt that reads "Ask me where my mom is."

I anticipate a proud arrest in my future for civil disobedience for handcuffing myself to the doors of the CDC or ILADS in order to draw attention to the desperate moves Lyme patients are willing to go through to get better.

Peace and health to all,
Mickie
Mickie, you crack me up. It's 6am and I haven't slept very good tonight but I laughed out loud when I read your post.

 
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