Timing the Lyme Test before/after Dr. Visit

[JuliaFaith]

I feel like this is the 'egg before the chicken question' but here goes:

 

We are treating my ds12 for PANDAS but he has not improved in several months. Was going to do the IGENEX testing on Monday, but today I talked to the llmd office (still trying to get appt.) and they want me to call back on Monday. So I asked if I should go ahead with the IGENEX testing or wait to talk to their office mgr. on Monday. She said that the doctor is able to diagnose some of the lyme co-infections without the test and that they will order tests for whatever they may be suspecting. This may be a less costly way to go rather than spending $1,000 on the tests up front. So I will, at least, wait to talk to mgr.

 

Sooooo, do I do the test first and then see the llmd or wait?

 

For those of you that have been through this, what do you think? I suspect my insurance will not pay for a large amount of the IGENEX testing but would pay for the llmd dr. visit and maybe more likely their tests as needed.

 

Oh, forgot to mention that our PANDAS dr. wants us to start abx and steroids on Monday after the tests are done.

 

Any ideas would be greatly appreciated.

Edited October 22, 2010 by JuliaFaith

[sf_mom]

I would wait as it might save you some money. We did a bunch of tests in advance only to realize our children don't make antibodies for Lyme and needed to do DNA testing. I'd also hold off on the steroids if you think it might be Lyme.

 

-Wendy

Edited October 23, 2010 by SF Mom

[JuliaFaith]

I would wait as it might save you some money. We did a bunch of tests in advance only to realize our children don't make antibodies for Lyme and needed to DNA testing. I'd also hold off on the steroids if you think it might be Lyme.

 

-Wendy

Thank you for the reply Wendy. Your prior posting, I believe, is what got me thinking about all of this to begin with. Best wishes on treatment.

Julia

[Suzan]

Our LLMD requested that we get the Igenex Western Blot, IgG and IgM before we saw her ($200 but thankfully our insurance paid $120 back). She does an undepth review of medical history and symptom history before you get there to hopefully use the inperson visit wisely. That said, we are still waiting on our appt to be scheduled so I don't know what other testing she will need us to do.

 

Good luck!

 

Susan

[sf_mom]

The good news is a LLMD will be able to help with PANDAS/Lyme and do proper investigative work looking for..... strep, mycoplasma, Lyme/co-infections, allergens, molds, viruses, etc.

 

Wishing you all the best in finding source of infection and getting your son well.

[JuliaFaith]

The good news is a LLMD will be able to help with PANDAS/Lyme and do proper investigative work looking for..... strep, mycoplasma, Lyme/co-infections, allergens, molds, viruses, etc.

 

Wishing you all the best in finding source of infection and getting your son well.

This is great information. Thank you again and best wishes for your children's lyme recovery!

 

Julia

[EmersonAilidh]

Lots of LLMDs do ART testing since, as someone said, some kids just don't make antibodies (especially P.A.N.D.A.S. kids who are already immunocompromised) & most blood tests are just crap. I'd wait until seeing the doctor.

[JuliaFaith]

Lots of LLMDs do ART testing since, as someone said, some kids just don't make antibodies (especially P.A.N.D.A.S. kids who are already immunocompromised) & most blood tests are just crap. I'd wait until seeing the doctor.

Thanks so much for your input. Will have to make some decision today. Still waiting to hear from the Llmd office mgr. Was supposed to talk last Fri. but was postpone til today, now postposed an hour. Wait and see... (this seems to be the montra on this forum.

 

Hope your treatment goes well.