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Lyme Disease Support Group
A community of patients, family members and friends dedicated to dealing with lyme disease, together.
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07/01/2008 19:44
lymeabean24mn
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Hey everyone! I'm from Minnesota and am 24. I'm part of the Minnesota Lyme Action Support Group and have been struggling with Lyme for the last couple years. I'm the webmaster for the group and I do my best to get the word out about Lyme awareness.

If anyone in this group knows people that are struggling in Minnesota or surrounding areas (we have a few people that come over from Wisconsin), please send them our way if they are in need of a support group. We meet in Forest Lake on the second Tuesday of every month. Our website is mlasg.com

I'm really excited to find this group of lyme people like myself who are sticking together to battle this tricky disease. My entire family has it, so we've been dealing with it for about three years now.

Also, our group is purchasing a group version copy of Under Our Skin which we plan on showing at surrounding movie theatres and schools. I'll post further notice when I find out what day and time our first showing is.

I look forward to talking with you all!!!!

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07/01/2008 20:09
synergyman
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Welcome to the group.

It is good to have more people from our group on this board. I am scheduled to meet with your mom and Jan on Tuesday. I was going to suggest they get involved with this board. But you beat me to it. I think you will find this is an exceptional group.

Say hi to Jill from Kim and Suzie Mitchell.

The complete link is www.mlasg.com

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07/01/2008 20:26
lymeabean24mn
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Hey thanks Kim! I'm excited to get involved with another group. BTW, my mom is wondering how your daughter is doing?

Hope all is well!!!

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07/01/2008 21:15
synergyman
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Thankfully, there was no cancer. It was a big surgery. She was in the Hospital for 4 days and will be out of work for 6 weeks. She is sore and still has a lot of pain. But, over all she is doing well. Suz and I were both In FL for 10 days to help her out. I am home now. Suzie will come home next Saturday.

I felt like a total Vampire being in FL while on IV Doxy. The sun just was just too intense. The best thing about being in Ft Lauderdale is the Cuban food. It was Gluten free, Lactose free, and just damn good. I ate at Padrino's twice a day. My son in law thinks I'm crazy. I just wish we had an equivalent restaurant here in Mpls.

To add to your first note we are going to run the "Under Our Skin" video at the next meeting. So for any of you that are in the Minneapolis, St. Paul, or surrounding areas send either of us a PM for date, time, and location. It will give you a chance to see an outstanding film and just as important a chance to meet other members of a wonderful and active lyme support group.

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07/02/2008 05:31
ConnieD
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Hi Lymeabean and welcome to our group!

We're always glad to have new members come and join us. I have learned a lot from this group.

Thank you for your work to raise awareness. We CAN make a difference, I believe that, too.

You say you've been struggling for three years with this disease. How are you doing now? Are you better? I'm sorry your whole family struggles. That must be really difficult. I'm in Tennessee, married mother of three. I am the only one in my immediate family with this horrible disease (right now). However, my Dad has Lyme, too. I am feeling great now and have even started getting back in shape with running. I never thought I would have the energy to run again, much less to be able to run without pain.

Thanks for joining us.

Peace,

Connie

Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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07/02/2008 16:57
lymeabean24mn
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Hey thanks Connie!

I am doing well now, at least for the moment

I was always so fatigued and didn't really have any energy for anything...I supposedly had Lyme and Babesia which would explain the extreme fatigue. After I was treated, I was able to go back to college again and made it on the Dean's List last semester with a 3.6 GPA!! I haven't done that since my freshman year in high school!

I'm still struggling with the whole gluten free diet which I kind of go on and off depending on the day.

My family is doing better for the most part.

My mom had it the worst though. She was misdiagnosed for eight years with Fibromyalgia and had horrible symptoms like numbing of certain extremities, especially her fingers, she had heart palpitations, was practically bed-ridden, fatigue like no other, and so on. THe list was pretty long and her doctors pretty much gave up on her I think. She's a nurse, so one day at work in the lunch room, she was listening to some people talking about symptoms and how they felt and they said they had Lyme, so mom went to that person's doctor and got tested... and sure enough, she had Lyme. Mom got pretty bad for awhile and had to have the pic line in her chest for a long time, but now she's doing great. I haven't seen her with this much energy in over 10 years. It's really nice to have my mom back, the way she used to be.

My two younger sisters also struggled with the disease.

Meggan had to have an pic line also and was very sick while on meds and Ang was on meds for awhile too, but they are ok now. Meggs is doing really well, but Ang is still struggling a little bit.

Now my mom is the president of our support group in Minnesota and very active in the Lyme world.

Before my mom was diagnosed with Lyme, the only thing I knew about Lyme disease was that it was transmitted by a tick. That was about it. Now, I can tell my friends where it came from and all the technical terms and everything, but it is still hard trying to get the word out.

The only time people even seem remotely interested in listening is when they have been affected by Lyme-whether in themselves or someone they know.

We're all hanging in there though. It's just sad to watch all these people struggle with a disease that could be handled so much easier and faster if it wasn't so politicized.

One of these days... I tell ya.... Peace out!

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07/02/2008 20:52
Luvdtoteeup
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Hi Lymabean,

I am also in Minnesota. I have been looking for support groups in Minnesota. I am friends with a couple of Lyme Advocates in Brainerd. Where are you located? I am in Northern Minnesota, about 10 miles from the Canadian border. Can you let me know who your family is doctoring with? I would like to hear who is treating your family. I am being treated right now, but I don't believe at the stage I am in that I am still not getting the proper treatment for it after it has been 13 years since I was bitten. I too was on a picc line for only 2 mos. and then I have been steadily going down hill since then. Will you let me know where you guys have your support groups meeting if you have them? Thanks a bunch, Luvdtoteeup.

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