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» LymeNet Flash » Questions and Discussion » Medical Questions » What do I have to do to be heard?

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Author Topic: What do I have to do to be heard?
the flim-flam man
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As many of you know, I contracted Lyme while in the military. It was not diagnosed until 10 years after my discharge. Wisely, I made copies of my medical records. There is a clear progression of Lyme symptoms right up until I was medically discharged for chronic knee pain.
I have been trying to service connect the disease for eight years. No end in sight. The VA's reasons for denial would leave you dumbfounded. Now, the infectious disease doctor who has supported my case has turned his back on me. I had a blood test which came back negative. He said there was a COUPLE reasons a test could be negative. I did some research and found 84 reasons.
I guess my question is : How do I get the doctors, the VA and family and friends to HEAR me? Any comments will be greatly appreciated. Sincerely, Don.

Posts: 31 | From Concord, North Carolina | Registered: Nov 2009  |  IP: Logged | Report this post to a Moderator
B4LYME
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More important than getting others to hear you, you need a LLMD to listen to you and treat you. First get treatment, then fight the fight.

If you go to the need doctor section you can ask for the name of doctors in your area.

First things first though, get a good doctor to treat you. While you are being treated, educate yourself about lyme.

Family and friends may never fully understand, but when they see progress with treatment it will give you an opportunity to discuss your new found knowledge with them.

I hope you are feeling better in this new year.

B4LYME

Posts: 144 | From PA | Registered: Nov 2009  |  IP: Logged | Report this post to a Moderator
massman
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Can you find a federal congressman or senator that will back you ? They may know a lot more about how to deal with something like this than others do.
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TerryK
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The military lyme group will likely be able to give you some good advice.

http://health.groups.yahoo.com/group/MilitaryLyme/

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Get as much documentation as possible about how Lyme persists and how it's difficult to test for. Use the "lyme is a clinical diagnosis" mantra.

I like both ideas posted above. Get treated now!!!!

and call your Senator!!!

This site has a lot of documentation:

www.wildcondor.com/lymelinks

and

www.lymeinfo.net or .com ?

and get tested now thru Igenex. Test #188 and 189. www.igenex.com

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95729 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Vermont_Lymie
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I agree with Lymetoo and massman, and actually all of the above advice is good.

Arm yourself with documentation, and get some powerful allies on your side that can advocate for and with you. And take care of your treatment and health first. Best wishes.

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dmc
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Contact the DAV -Disabled American Veteran's association they have specially trained people (veteran's) that help you.

My state, CT has a state Veteran's organizatio that helps veterans with navigating the VA bull___. My diabilty wasn't for Lyme...I was "MS" and had back injury.

Check you're state to see if there is one.

regards, and good luck

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
sickpuppy
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As for your family and friends, maybe if they watched the film Under Our Skin they could begin to get a glimpse of what you're dealing with.

Some people aren't equiped to understand because they've never really been sick, or because you don't 'look' sick, or because the disease is so misunderstood. If you have one or 2 allies amongst your friends and fam, that may be enough.

Besides, you have all us lot on lymenet who TOTALLY understand. Is there a support group you can go to in your area.
I agree though that treatment is first, fighting fights has to fit in where it can and as required.

all the best to you

Posts: 702 | From North Eastern USA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
   

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