Igenex test for Lyme disease

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jay23556

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Hi All. I've been given a possible diagnosis of ALS by a very reputable doctor, and alternatively have gone down the Lyme route to be sure and have had the contreversial Igenex test done that came back as positive for Lyme. Does anyone here have any experience with Lyme or this test in general? Any other PALS or diagnosed folks gone down this route?
 
> I've been given a possible diagnosis of ALS

I would strongly encourage you to find an ALS clinic and get a 2nd opinion.
 
>Already have, 3 docs confirm the same thing.

sorry to hear that! Best of luck and welcome to the club.

Max
 
I should correct that, 3 doctors gave me a "possible" diagnosis so I am still in limbo unfortunately. Anyone else been in the same boat.
 
Welcome to my world. Diagnosed possible, on riluzole . Life would be easier knowing,I guess. However not knowing still means you may be 3and2 but still fouling pitches back. Good luck
Vincent
 
Thanks Vincent. I don't have much weakness, how about you? How long have you been "possible"? Have they ruled everything else out yet? Haven't started riluzole yet but have a bunch of supplements.
 
I was diagnosed as possible on February 2nd and on riluzole since. The latest thing is IVIG to check for MMN. Tested for Gm1 antibodies, came back negative, but still inconclusive. As far as weakness goes I've been wearing an AFO for a year and a half. Also noticing hand weakness. So I'm still on the treadmill.
Vincent
 
Sorry to hear about the AFO, let's hope they find something else. If it wasn't for the fasics I probably wouldn't have caught anything else. It's either super early or they haven't found some other cause.
 
Wife was diagnosed 12/13. Does not have weakness. Has fasciculations arms, legs; slurred speech. Still walks 2 miles, does light weights. 2 separate docs, one a "specialist" (seems to be more interested in getting her in trials). Going down the Lyme road now to see if that is a possibility. Would suggest same for anyone else. Google "when ALS is Lyme".
She has had 2 "positive" EMGs as well.
 
>Wife was diagnosed 12/13

was the diagnosis by an ALS clinic or an ALS Neuro? If not a second opinion might be in order ...
 
Neurologist first. Second by neuro ALS specialist. EMG done by both, same result. No weakness so that's why I am checking Lyme.
 
I was diagnosed with ALS 4 1/2 years ago. Diagnosed with Lyme with the Igenex test three years ago. I have not progressed at all since my Lyme diagnosis.

Another woman I know who was diagnosed with ALS and Lyme via the Igenex test has also stopped progressing. Not sure if this is a coincidence or not.

Both of us were diagnosed at an ALS Center and had second opinions at another ALS Center.

If anyone wants any additional information, please do not hesitate to contact me.
 
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