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Need advice on IgenX test

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Posted 9/15/2016 3:56 PM (GMT 0)
Have to go get blood drawn (standard panel to check how I'm doing post lyme also checking T3/T4).

LLMD originally wanted to do IgenX testing. Right after I was bitten I had the testing but it came out negative and indeterminate (weak positive). I know that I 100% have lyme and so does LLMD.

He wants the further testing to see what bacterial strains show up and to look for cos and more bands. I was originally tested soon after my bite. Hoping that there is enough in body now to pick up in test. Who hopes that?

Anyway, part of me likes the idea of knowing if/what my cos are and if any new bands pop up. LLMD explained each band tells him something different.

My original testing was around $600-700 all in, internist was $300, infectious disease specialist was $300, LLMD was $950.00. Supplements/herbs like a million dollars (JK).

I want to do this but to spend another $750? My followup LLMD appt is in October and that is $350. AND I need to do all of this for my son now.

On one hand I feel lucky for not going to doctors for years to figure it out so can justify it that way. I am a person who likes to see data/facts/have information.

Thoughts?
Posted 9/15/2016 4:29 PM (GMT 0)
Daisies,

You were not rambling AT ALL! In fact, immensely helpful. I'm going momentarily and trying to decide what I can cut out. I had never heard of Advanced lab nor Ispot - so again, very helpful.

Doctors can't give meds for certain cos if they don't show up (I may have that data point wrong) but something along those lines. I do like the idea of more real data since I have no co symptoms yet. I fully understand that they may be hiding and still not show up.

I cannot even imagine your expenses for four people. I hope you have a Go Fund Me page out there! Oh my goodness. I agree with you, for my son I'll do any and all testing for myself I may roll the dice.

Leaving now. Thanks!
Posted 9/15/2016 4:30 PM (GMT 0)
I chose to not do any testing when I got reinfected. No matter what the tests say, we treat by symptoms anyway. But, I was very nervous about not doing any testing though! I'm still not convinced that I don't need to be tested, but our budget doesn't stretch far enough for me to do testing and be in treatment, so I had to make a choice, and chose to treat instead. It's not like I can get to a LLMD to help me anyway.
Posted 9/15/2016 4:34 PM (GMT 0)
Trav,

If I possessed one quarter of your knowledge regarding lyme and the herbs to treat it, I probably wouldn't test at all. In fact I would hang a shingle out and treat others!

I am too confused by lyme, although you lyme angels have saved me, and I don't want it to get too far ahead of me. So if new testing can reveal another puzzle piece and I can be treated for it at my next follow up visit it may be worth it. Hey, I never got to go on vacation all summer so I save all that vacation money :(
Posted 9/15/2016 4:47 PM (GMT 0)
If testing actually was more accurate, then I would have chosen to test - but since we have to guess anyway, I just figured I could figure it out! LOL! Likely a wrong decision, but I'll live with it.

I wish testing was better, even if that was the only thing that was improved at this point!! I mean, just how nice it would be if we could KNOW what we are dealing with, instead of guessing???

Dr. Alan MacDonald HAS proven how to 100% know if you have Lyme with a DNA probe, but he can't get the funding to mass produce enough of these DNA probes. His original desire was to provide the DNA probe, and all training to use it, to every single MD in the US for free - he wasn't even going to make any money from it!!! But he can't get the funding to move forward, so this is stalled now as well.
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