My dr and lyme test...

[skarey]

I had called the dr office earlier the week to ask about my dr putting in the lab for the Igenex test.  Well they just called back and the nurse said the dr doesn't recommend me doing the Igenex test.  He said he'd rerun the test with Quest again, but he thought Igenex would be a waste of my money.   He told her yes that I'd had lyme in the past, but that isn't showing I have a current infection.  He had never even heard of Igenex nor had the nurse.  When I told them that Igenex tests for more bands, she said that Quest runs all the appropriate bands needed.  I am so frustrated with this right now.  I don't know what to think.  A big part of me is saying I very likely could have lyme, but the other half is saying that I don't.  

I don't know what to do.   Should I scoop out the money for the Igenex test or should I just go with what he is saying?  Advice is needed.
  
Thanks!

[Chatterbox58]

Hi, whatever happened, I was scrolling back and saw this post.  I had the WB, IGM, and IGC, the bands that were reactive were IGM, took doxy for a month.  I have been having many problems since then.  I am considering a LLMD, have you been to one yet?

[JackieCalifornia]

Nope, Igenex doesn't take insurance, and when I have the blood draw done at labcorp for the Igenex test, labcorp makes me prepay the Igenex stuff with a credit card.  My LLMD doesn't take insurance either, which I hear is not uncommon.  You can file with your insurance company for reimbursement.  MDs and labs are tired of having to pay an army of billing clerks to file with patients' insurance companies, so they push the leg work back on the patients -- it's a cost cutting measure for the insurance companies.  Rational, but a pain for us.

I'd definitely find an LLMD were I in your situation ... which I was.  The problem with non-LLMDs is that even if they are friendly and want to be helpful and are willing to learn about Lyme, the first place they go for information is the CDC and the 'standard of care' enunciated by IDSA ... ILADS and its treatment guidelines are not CDC/IDSA approved, so an inexperienced MD is in my experience unlikely to stick his/her neck out and go with the ILADS guidelines.

[skarey]

Thanks for the feedback.  I hope he will sign for it.  What does he got to lose?  He's not paying for it!  I guess when I get the Igenex package in the mail (which I thnk is here already... I got a slip in the mail today. but post was closed) I'll make an appt with him and take the stuff with me.  He doesn't even know what Igenex is.  Maybe I'll print out some info from their website too to show him.    I hope he'll do it.  

I would really like to get tested for the co infections as well.  Can one have the coninfections and not Lyme?  How much is it to get tested for everything?  

Why doesn't Igenex take insurance?  I heard that they send you a receipt that you can file with your insurance.  is this true?  

Anyways I am just frustrated and wish my dr knew more about testing and lyme in general.  

Maybe an LLMD is in order.  

Thanks again!

[patsy10]

Do you think he will sign for the Igenex test if you insist you want it done?  

If finances are a concern you could just have the Igenex WB IgG, IgM done for starters and go from there depending on the results.

[JackieCalifornia]

Very sorry to hear this; the good news is, you aren't just knuckling under and going away.  You are strong!

I would think about calling back and saying very nicely that it would give you peace of mind to have the Igenex test done, and just keep after them ever so nicely but persistently.  You risk them telling you to find another doctor, but I doubt that -- drs just do what they are used to doing everyday and really don't like uppity patients who call them on it ... but it's your health, not the doctor's health, that is in question.

And, in the meantime, look around for a new doctor in case you need to make the jump.  I did that.  I was juggling several doctors of various types (internist, endocrinologists, whatever) pursuing on all fronts, until I finally got an appointment with an LLMD, but until I saw the LLMD, I kept seeing the other docs too, as necessary, just hedging bets.  Not cheap, but what price health.  The hardest part was how confused I was with Lyme-brain, trying to keep track of all this, all the while half believing I was just crazy and in the process of losing my job from not being able to work.  The eighth circle of h*ll, only I'm not the one who belongs there:  it's the medical profession who denies we are ill.

The disease is awful; the treatment sometimes no fun; but the worst part is finding the right doctor to get a proper diagnosis.  Be brave.  Don't be afraid of offending the doctor.  It's YOUR health and life we're talking about, not your doctor's.

[skarey]

The nurse called back again.  I had asked her if the abx would affect the test since I was on abx just before the WB was done.  She talked to my dr. and he said no that the abx wouldn't affect it at all.  He said you either have antibodys or you don't.  Abx don't change that.  Then she said he didn't see any point in doing another WB now.  He said the results aren't going to change.  I am so FRUSTRATED!  I feel like crying!  Why don't MD's know **** about Lyme or the testing?