LymeNet Flash: It's official...I got a positive test result from IGeneX today.

This is topic It's official...I got a positive test result from IGeneX today. in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/50230

Posted by Dianne (Member # 9450) on :

Hi everybody,

I joined this group months ago because I've been searching for something besides a fibromyalgia diagnosis since May 2003. At the time, I had what the doctors thought might be a spider bite and of course I was tested for Lyme, several times since then, but always got a negative result.

I'm so thankful for all the wonderful people online, in this group and others, who convinced me to get tested by IGeneX.

It's such a relief to finally have a "real" diagnosis because my family, mainly my daughter and some of my sisters, have "implied" that I just wasn't trying hard enough to get better.

Now I feel like I can tell them all "I told ya so [rant]

!! I'm not crazy [loco]

and yes, I've really been in pain all this time while you've been treating me like a hypochondriac drug addict.

Now I'll probably have to educate them all about how it might take years of antibiotic treatment for me to start feeling better because they'll probably think I'll be cured overnight.

I never thought I'd be so relieved to have a diagnosis [woohoo]

I know the road ahead won't be easy but at least I know what I'm dealing with.

I've already been approved for SS Disability, about 2 yrs. ago, after only a year. I'm one of the very lucky ones who got approved pretty quick but I know I was approved on more than just the fibro diagnosis.

I was born with a rare birth defect called Poland's Syndrome (I'm missing my left pectoral muscle and some ribs) so I've been through about 30 reconstructive surgeries to correct it. The implants, and the many infections resulting from them, caused me more trouble than it was worth and I'm sure my immune system was weakened by all of that.

The "bite" in 2003 seemed to be the last straw for this tired old body (I'm 46 but feel like 80!). I also got a diagnosis of a long-term type of depression because I'd been through so many surgeries just to end up with a more screwed up body than I started with. So I was approved based on all 3: the birth defect, the depression, and fibro.

By the way, I noticed other members who live in VA and even though I live in PA now, I was living in Newport News, VA, (right at the York County line) when I got bit.

I came back here a few months after I got sick because my family is here but I miss VA. I lived there for 23 years (21 in Hampton and 2 in NN) so I spent most of my adult life there.

If the doctors there had diagnosed me right and treated me for it, I'd probably still be there. I think I'll start calling every doctor I went to in Hampton Roads during May-July '03 so I can tell them "thanks for nothin'".

I'll do my best to become a more active member of this group now that I know for sure but give me just a little time for this to sink in.

My family doc here in "the middle of nowhere" seems to be perfectly willing to treat me long-term so I'm lucky about that. I think he's just as relieved as I am to finally have this diagnosis.

Thanks for being here and for reading all of this. Good night.

Dianne

[ 14. December 2006, 02:21 AM: Message edited by: Dianne ]

Posted by Lisianthus (Member # 6631) on :

Welcome to the "Bug Club" Diane

Hope you get debugged soon [Big Grin]

Seriously... I'm glad you have a doctor who is willing to treat you long term, I would be grateful for that. And try to educate him/her with Dr. B's guidelines and everything you learn here and maybe your doc may turn into another needed LLMD.

Good luck with treatment,
Lisi

Posted by bettyg (Member # 6147) on :

congrats on your positive dx from igx; has your pcp informed you that he was proving you to be clinicially!

i couldn't read most of your post; please edit it by using pencil icon and break it up ok.

hit the enter bar twice so we know when there g3tinw a new paragraph; big thanks!

Posted by Robin123 (Member # 9197) on :

Hi Dianne -- same story here with fibro, the mystery condition -- I've been communicating with all medical personnel I saw for it before I found out it was Lyme -- real important that this work be done when you're ready to do it, in order to alert the medical community when the next folks come walking in their door...

Good luck in finding antibiotics to help you. My fibro has responded somewhat to 150mg clindamycin 2-4x/day. We're all different, so each of us has to find out what helps.