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Hi all,

I've posted a couple of threads recently related to PANDAS/PANS and Lyme.  I called a Lyme Literate doctor this morning and they are booked up for a few months and suggested I get Lyme screening through the US (Igenex) while I wait for an appointment.  I checked Igenex's website and there are a variety of tests so not sure where to start.  My daughter had a bullseye rash last summer that went away the same day; I saw it reappear briefly a few months ago and it disappeared as quickly - not sure if we should test for "tick-borne illness" vs Lyme specifically (especially if we both have some symptoms)?

Does anyone have suggestions for which test(s) to have done?  I have reached out to Igenex Customer Service and am waiting to hear back....trying to get some info quickly as I have a doctor's appointment tomorrow and would like to be able to review and request tests with my doctor.  (I don't think my GP is Lyme literate.)

Thanks!

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If your doctor is not familiar with Igenex then perhaps consider finding a LLMD.  Regardless of which doctor you use,  Igenex will characterize results and indicate positive or negative status which we found helpful.

If you suspect a tick bite, the Igenex Tick-Borne Disease panel will test a variety of infections likely from a tick bite.  Keep in mind that ticks can transmit a variety of diseases, and testing for diseases other than B. burgdorferi might be helpful in confirming a tick bite if you get positive results.  Igenex should be able to tell you the specificity and sensitivity for each test to help you understand the potential for false positive results and false negative results respectively.

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Thanks msimon.  I was hoping to go the LLMD route first but the one I spoke to this morning said that they are booked until end of June and that I should try and get bloodwork ahead of time and gave me Igenex's website.  (The other referrals are for practitioners out of town or require a confirmed diagnosis of Lyme in order to get an appointment.  I don't mind going out of town if necessary but without more 'evidence' I was hoping to try local first, if possible.)

To be honest, I don't recall having a tick bite.....my daughter had the bullseye rash (aopeared twice) and she and I are both experiencing some similar symptoms (I posted a separate thread on this).  I checked the Lyme Disease symptoms list and can identify with at least a third of them (not sure if that is relatively high or low), so figured it would be good to get tested and try and rule in or out LD or other tick-borne illnesses.

Edited by eatmoregreens
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You can pull the lyme panel tests from the igenex website. Note that it may be out of pocket depending on insurance. You will want lyme IFA, western blot, and serum pcr tests. You should also test for the co-infections especially Babsesia (do antibody, pcr, rna fish tests) and Bartonella panel. Mycoplasma also commonly an issue. Medical diagnostics laboratory also has a good reputation and is more often covered. The IMPORTANT thing to know is that many of the typical Lyme &.co tests are based on antibodies and in tick borne illnesses the immune system can be down regulated so that you don’t make the needed antibodies—and so tests are negative even though the infection is full on raging.  

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So I spoke with Igenex yesterday afternoon and they recommended the Lyme Immuno Blot Panel 3 - they said it is replacing the Western Blot test and is 90% accurate.  For co-infections they suggested Co-infection Panel #3 and said it is rare for the results to be innacurate.  Does anyone have any thoughts and/or experience with these tests and your results?  After speaking with them I went back to their website and it looked like a different test altogether should be run first (ELISA?)..does anyone know anything about that?

Sirena: Any tips on tests to take through Medical Diagnostics Laboratory and their relative accuracy?

In terms of timing and if now is a 'good' time to test....my daughter had the bullseye rash first appear last August; lasted less than a day, and again in....I think....January?  Also only appeared a short time.  Her cough/could came on about a month ago and mine about 3 weeks ago (odd symptoms asdociated with it came on about 2.5 weeks ago).  

If she (and we) have mycoplasma pneumoniae (which we seem.to have a lot of the symptoms for) does it make any sense to pursue Lyme testing?

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Has anyone tried muscle testing as a preliminary way of trying to see if you have Lyme or coinfection (or PANDAS /PANS)  If so, were the muscle test results accurate?  Does it matter what the antibody levels are like in a blood test or would you still test weak if you have it regardless of fhe antibodies?

Edited by eatmoregreens
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