Lyme Testing

[BellaJake]

Sorry if you've had this question many times. I've been sick for many years and have many of the symptoms of Lyme. But I believed I was clear because of the standard blood tests the doctors always do.

Tonight my friend told me about the IGENEX (spelling?) testing for the first time and I was blown away.

I have a PCP, Rheumatologist, Neurologist,ENT, Cardiologist and many more doctors and no one had ever mentioned.

Do any of you have a recommendation on how I can my doctor to order this testing?
Thank you!

[JackieCalifornia]

Welcome to MedHelp -- this site has a 'new' format that makes it hard to know what area or state(s) the poster is in or can travel to easily.  
I would agree with your friend about IGeneX ... I was tested there as well, and it has a proprietary test that other labs can't duplicate.  I would go to the IGeneX website and read up a bit on what they offer that other labs don't, then print out the lab orders (I think they are posted on the IGeneX website), and take them to your friendliest, most open-minded doc you have seen.  Ask the doc to authorize the blood draw and testing.  If you don't have a friendly doc, then finding a Lyme-savvy MD is first on your list of things to do.  Your profile doesn't say where you are located (like 'near Philadelphia' or 'can travel 50 miles from Kansas City' or whatever), but if you can tell us then we might be able to suggest something.

Note that we do NOT put Lyme docs' names in the public here, to avoid the local and state medical boards cracking down on the docs for engaging in new-think.  

My doc used both the Western blot/ELISA *and* the IGeneX testing -- the more the merrier.  If you do not already have copies of all tests done by your docs so far, then I would get copies (full, detailed copies, not just summaries that say 'negative') and always keep a set of those for yourself at home until you are treated and well.  The non-IGeneX tests are not worthless, but are not as good as IGeneX tests, so all of them are worth having and giving copies of them when meeting with a new doc along the way, if that is the course you end up following.

You can go to the ILADS website and use their referral feature online for docs near you.  Being an ILADS member doc does not automatically mean the doc is the best that can be, because there is no rigid list of what a Lyme doc must believe in diagnosis and treatment ... but it's a good place to start.  Just keep your antennae up, and if the doc doesn't seem to be on the ball, switch docs.  That normally isn't necessary, but fwiw, jic.

Hope this makes some sense.  Lyme is not like other aspects of medicine I ever encountered, but it's worth the hassle in finding a wise and useful doc.  We do NOT put names of friendly Lyme docs here in public, because the local and state medical boards then have their list of who doesn't engage in 'old think' about Lyme like too many docs still do.

I know, this game of chess is more than you have the juice for now ... but finding a local patient-oriented Lyme group or chapter of state or regional Lyme organization near you is very helpful, because these patients often have the best scoop on which docs in the area are the best.  Let us know how you do, and how we can help.  Take care!

[JackieCalifornia]

and PS ... ask a friend or family member to help you collect and organize all your test result copies, so if you switch docs along the way, the doc can see your entire history.  It can help a great deal.