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Old 11-02-2012, 07:56 PM   #12
MCM463 MCM463 is offline
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Join Date: Nov 2012
Location: Tennessee
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Daughter Diagnosed in 2008 at age 17

She complained of what we thought were floaters but upon more detailed description my husband said it didn't sound right. Luckily we took her completely by accident to a retina specialist who recognized it in minutes. My husband didn't like the diagnosis - so rare, daughter so young, and doctor was new to us and so quick to make the diagnosis. So he referred us to Dr. Anita Agarwal at Vanderbilt Eye which is where Dr. Gass that 'discovered' AZOOR was and Dr. Agarwal was his protege. After tons of more testing including ruling out any neurological issues, she confirmed the diagnosis and put my daughter on an experiemental treatment of then fairly new antifungal Valtrex and prednisone (like 40 mg!!!) several times a day for 45 days but it was just too much for a petite tiny 17 year old girl (under 100#) and gave her severe headaches, light sensitivity after about a week so she had to be taken off. But at least it did not seem to progress from initial diagnosis. Her loss of sight is mainly peripheral but does interfere with things some.

She was diagnosed with fibromyalgia and chronic fatigue syndrome in 2011 and with necrobiosis lipiodica lesions in October. Our family dermatologist told me an interesting theory back in December which he had a grant to research at one point but funding got cut. He was familiar with AZOOR and fibro and believes they are caused by a virus that we all have and while it can't be eliminated it can be controlled to eliminate the symptoms.

Well, late September we found a doctor out of state doing some studies on fibro and I got his attention throwing in the AZOOR which he was not familiar with. His theory is basically the same as what our dermatologist said. We got in to see him and after a little 'prior authorization' issue with insurance, she started the drug cocktail last week. He said to give him six months. It's no new drugs, just an 'accidental discovery' of the combination working for fibro and other conditions than what originally prescribed for. We had nothing to lose since traditional fibro is just treating/covering up the symptoms and she stays on those until this starts to kind of force the reduction of activity by the virus.

Besides the fibro, we are hoping to see some eventual reversal of the AZOOR which we have pretty much been told not to expect by Dr. Agarwal. The body has a great ability to heal itself given the opportunity and treated right so... But the necrobiosis lipiodica is considered auto-immune and they really don't know about AZOOR and fibro so let us all cross our fingers this doctor is on to something and it does all tie together - he's is only focusing on the fibro/CFS but we are holding out hope for a link. I'll try to remember to post updates as we go through this.

Last edited by Administrator; 11-02-2012 at 08:46 PM.

 
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