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Lyme Disease ForumsDoctor (LLMD) Requestscan lyme mimic shydrager?
07/03/2012 03:32 AM
noreh
Posts: 2
New Member

I was diagnosed with shydrager, or also known as multiple systems atrophy.

by the Mayo Clinic. They would not address lyme since it was not in my blood work.

7 years ago I had lyme and was treated for 2 1/2 years. It was in my neurological system.

I was on a pic line for 90 days. My symptoms went into remission. At that time I also had rem behavior disorder (acting out nightmares)

3 years ago my bladder stopped working , I must strain in order to urinate.

I had to have open heart surgery to replace a bicuspid valve and i started having severe orthostatic hypotension. i needed to use a wheel chair

i started a lyme treatment orally (the lyme never showed up in my blood work until it was sent to igenex) and I was able to put the wheel chair away and return to work. I still have OH but it is manageable now.

I also have a nystigma (SP?) in my left eye.

Could this be lyme related? I am hoping so since the diagnosis for MSA is untreatable.

Thanks for any info you could give me...Sharon

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07/03/2012 07:13 AM  Top
cmany
cmany
 
Posts: 6205
Group Leader
I'm an Advocate

Sharon...

I just did a quick check on your DX...Think it is time to get back with an LLMD...the symptoms are overlapping...and of course multiple systems atrophy - is of UNKNOWN cause...

Mayo Clinic ALWAYS drops the ball when it comes to LYme...and with a previous dx of it...Yes...you more then likely have had a flare up of the illness...possible reinfection too...that is causing such severe reactions...

Mayo Clinic is NOT the place to go for anyone who has Lyme - whether it is active or not...NOPE they would rather give you DX's of unknown origen rather then look at the HUGE picture of Lyme and the OVER 300 illnesses, diseases, and symptoms, and conditions that it can mimick and create...

Pitiful....DO you need a new LLMD (Lyme Literate DR) - IF so...please make a request here in the LLMD request forum...follow the instructions by irenwill - and we can get that info out to you....

If you are interested in alternative practitioner options...please feel free to PM me...

Hang in there

Christine

[b]Group Leader Disclaimer[/b]
First and foremost - I am NOT a doctor, anything I share is based on experience & research. I strongly encourage you to discuss any and all information that I share with a health care provider.
************************
"I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road...
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now" Eminem Not Afraid
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07/03/2012 05:18 PM  Top
irenwill
irenwill
 
Posts: 1849
VIP Member

Hi norah, yes an LLMD would be a very good idea. If you need a referral to an LLMD, please post where you are located.

Thanks for helping us help you.

I am not a doctor, just a patient striving for recovery and hoping to offer support to others, too! Many blessings to you!

Any information offered is just sharing my experience and friendly advice, NOT a prescription. You should use your own judgment and discretion when making health care decisions.
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07/04/2012 06:20 PM  Top
irenwill
irenwill
 
Posts: 1849
VIP Member

Noreh sent me info in PM. Sent her info. Locking this post.
I am not a doctor, just a patient striving for recovery and hoping to offer support to others, too! Many blessings to you!

Any information offered is just sharing my experience and friendly advice, NOT a prescription. You should use your own judgment and discretion when making health care decisions.
--- The discussion has been locked ---


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