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micael15680
08-13-2011, 10:40 PM
Does anyone have any data or experience with Igenox doing a Lyme panel test? Is it worth it? I was advised by an ID Doc to look at it as they have a whole set of crazy Lyme tests nobody else has... feedback appreciated.

brian9954
08-14-2011, 08:53 AM
Hi...

Like others, I did pursue lyme disease after my ALS diagnosis. I asked my MDA clinic neurologist about the Igenex testing. Her comment was "everyone tests positive for something on their test", and definitely did not consider it reliable in any fashion. Going to a different Lyme literate MD, I had the Igenex testing done... and came out "inconclusive" on a few of their bands. This doctor thought that was sufficient enough to start treatment. I did go ahead and start some heavy dose antibiotics for a couple months (figuring I didn't have a lot to lose). Then his treatment plan changed too weird for me, and I wasn't willing to take the medications he wanted me to take. For this and other reasons, I stopped all of the lyme treatment.

Someone else on the forum once said that you have to watch out for Lyme literate MDs, because many of them will see Lyme disease everywhere. I think I would agree with that statement as well.

So am I glad I had the testing done? Both yes and no.
Yes... because it did put my mind somewhat at ease getting test results back that showed I didn't have a clear-cut positive result for Lyme disease.
No... because the results did come out wishy-washy, which I actually somewhat expected.

So I think the question to ask yourself is, what would you do with a inconclusive test result? I would recommend understanding the full treatment plan ahead of time, and determine if you are willing to undergo that treatment based on test results that may not be viewed as entirely reliable.

I'm not sure I actually helped at all... but there are a few thoughts.

kevin12579
08-14-2011, 06:02 PM
Investigation: Ten ALS clinician-scientists from
across the United States and Ireland have thus
far shared their experiences with Lyme disease
testing and treatment. All those weighing in use
standard testing for Lyme, as is recommended by
the American Academy of Neurology, the Center
for Disease Control and the Association of State
and Territorial Public Health Laboratory Directors
(7, 8). Only 3 clinician-scientists have routinely
tested most or all newly diagnosed patients with
ALS for Lyme, the other 7 test it only when there
are other symptoms or signs of possible Lyme, or
when a patient asks for it. In all, more than 4,000
newly diagnosed PALS have been tested for Lyme
by our group, with only 30 having had positive
Elisa and Western Blot tests. Thus, in our experience,
the incidence of positive Lyme disease
testing in PALS is less than 1%, which is similar
to the background incidence positive testing in
people without ALS across the United States (9).
Of the 30 PALS with positive Lyme tests, most
were treated with intravenous antibiotics effective
against Lyme for recommended durations (10),
and none was ever seen to improve.
Recommendation: There is no convincing evidence
that ALS can be caused by Lyme disease. PALS who
exhibit symptoms of co-morbid Lyme disease can
request standard, CDC-approved testing for Lyme
from their neurologist, with the understanding that
treatment of a positive Lyme test will not reverse
their ALS. Until Lyme literate clinics can provide
reasonable data supporting their claims, we do not
recommend that PALS pursue evaluation or treatment

ellen15183
08-15-2011, 07:35 AM
I have done a lot of research about Lyme. When my symptoms started I had a few ELISA Lyme tests done over the 1st few months-- all negative. Then another dr I saw ordered the Western Blot and it came back CDC positive on two bands with an asterik **the two bands tested positive could be a possible false positive as they could be a cross reaction for an auto immune disease. Dr wanted to treat me anyways, so 3 months later after heavy doses of 2 separate antibiotics, and NO improvement, she retested (using LabCorp which she had confidence in), I tested Negative, no antibodies showing, but still had concerning symptoms. At that point I inquired about IGENEX and she felt that the lab had been criticized for showing too many positives which lead to over treating people who may not have it. I would go with the lab your dr recommends and save yourself the $1000 it costs to run the full panel. Clearly we have a long way to go with Lyme and guidelines for treatments/testing. Just my two cents.....

susan14426
08-15-2011, 04:15 PM
Don't waste your money. They are being investigated by the FDA, as their testing isn't known for its accuracy. There is a link somewhere here on the article I found.

It seems to be the new 'fad' disease to test and treat. Thousands of dollars later, no better physically--just out tons of money and immune compromised from months of antibiotics.