I've been deliberating over getting neurological autoimmune testing done for a little while as im unsure over the legitimacy of this lab and there isn't much information on forums about it.
Has anyone had any positive or negative experiences getting testing done via this company? Did your doc take the test results seriously? Thanks
http://www.kentnutritionclinic.co.uk/laboratory-tests/cyrex-tests/7-cyrex-neurological-test/
I've had tests done with Cyrex labs. In fact, I did every test they offered ~5-7 years ago. I first found them when researching how to test comprehensively for gluten sensitivity and leaky gut. I found them to be very helpful for me as I tested positive for antibodies to gut tight junctions, several gluten antigens, and
many autoimmune autoantibodies. The most important test for me was the autoimmune panel. I don't think the food antibodies are worth testing because you'll likely test positive for them if you have leaky gut. And for me, it would have been far to difficult to alter my diet to eliminate foods as I tested positive for so many. Cyrex used to (and may still do) that the test they offer are more sensitive than many other lab tests, which is hard to confirm with other sources
My integrative and alternative doctors took/take the lab results seriously. However, if you take the results to a mainstream, regular doctor, they likely won't take the test results seriously. I've been to 3 rheumatologists and none of them took the Cryex Autoimmune panel results seriously, even though my main symptoms & complaints and dysfunctional organ systems (as confirmed with other lab testing) matched up very well with the positive autoantibodies. The rheumatologists all said, "I don't know what to make of these," "I've never heard of this lab," and "you're negative on my [quest] autoimmune lab tests."
I've explained to them that these Cyrex labs are literally the same "off-the-shelf" benchtop, autoimmune tests that PhDs and researchers use and buy from Sigma-Aldrich and other scientific/industrial suppliers. It's just that Cyrex is a specialty lab and provides this service for doctors. So, if you believe antibody results you see in reserach papers you read, you should believe these Cyrex lab results.
The rheumatologists also say "Well, okay, so if we are to believe these test results, you may have some antibodies, but you don't have autoimmune disease. So there's not much I can do." And I reply with, "No shit. That's the point. I don't want to GET autoimmune disease." What's the point of waitinig until these autoantibodies do so much damage I have organ or tissue damage and thus "fully developed autoimmune disease." Why should I wait until I get diabetes, ALS, or arthritis and pancreas, myelin, joints that are totally non-functioning for you do do something for me. I even gave them research papers that show that autoantibodies can serve as predictive values 10+ years in advance for future autoimmune disease. All to result in no interest and nothing to offer.
Suffice to say, I'm frustrated by not taking these test results seriously and am still searching for a rheumatologist/immunologist to help with my autoimmune disease, especially since CFS likely has as big autoimmune component.
My CFS doctor who is a mainstream infectious disease doc but who is a good doctor, very open to learning to new things, and intellectually curious did give me prescription for Plaquenil, an autoimmune drug to act as a prophylactic to help prevent development of full blown autoimmune disease.
I've asked my doctor who ordered the Cryex lab tests to call Cyrex labs and speak to their lab director for more information, literature, and advice on how to get other doctors and specialists to take these results seriously. I think that if I can get the
exact benchtop test, its manufacturer, CPT code, etc. that Cryex uses for each test result, then other doctors will take it more seriously.
You could try calling Cyrex and getting more info to clarify it's legitimacy.
