Regular Docs and their buy in

[Suzan]

Are you telling your regular doctor about your Igenex lyme testing and results? Do you find that most doctors poo-poo the whole thing? Are you just moving foward with your LLMD anyway? How much are you involving your regular doctors with Lyme?

 

I am asking of course because we have started with our pandas follow up appts and our first appt went OK but not great. I fear we may be going out on our own soon with the LLMD without the support of our local docs.

 

Thanks,

[JuliaFaith]

Are you telling your regular doctor about your Igenex lyme testing and results? Do you find that most doctors poo-poo the whole thing? Are you just moving foward with your LLMD anyway? How much are you involving your regular doctors with Lyme?

 

I am asking of course because we have started with our pandas follow up appts and our first appt went OK but not great. I fear we may be going out on our own soon with the LLMD without the support of our local docs.

 

Thanks,

We are having the Igenex test done on my ds next week with approval from our doctor. It was my idea and she went along with it. She is a very good integrative doctor but has little experience with Lyme. She suggested that I find a Lyme dr. and make an appt. (because they are so hard to get in to see) and her and I will discuss the test results first. She also has other doctors that she will confer with about the results. She has treated several PANDAS patients.

 

Any good doctor would do what she is doing. She truly cares about her patients enough so that if they need other specialist's help she is very supportive. She sees herself as our cheerleader and my son loves to visit with her because she is so understanding of what he is going through right now.

 

With PANDAS and Lyme it seems you really need a good doctor so that there is one less thing to worry about.

 

Best luck finding a good doctor(s)!

[Megs_Mom]

In Charlotte NC, use extreme caution when mentioning Lyme - everyone here is still VERY rattled by the Lyme lawsuit that put a doc out of business (he is featured in Cure Unknown). Bad thing to mention Lyme in NC. Gets you right onto the nutty list. I'd just go see the LLMD and then decide what you want/need to tell others. You can always call it PANDAS . Wierdly, that is more acceptable.

 

Sorry to be a downer, just have been down this path on the adult side (no so much on the kid side by the way).

[Suzan]

In Charlotte NC, use extreme caution when mentioning Lyme - everyone here is still VERY rattled by the Lyme lawsuit that put a doc out of business (he is featured in Cure Unknown). Bad thing to mention Lyme in NC. Gets you right onto the nutty list. I'd just go see the LLMD and then decide what you want/need to tell others. You can always call it PANDAS . Wierdly, that is more acceptable.

 

Sorry to be a downer, just have been down this path on the adult side (no so much on the kid side by the way).

 

I think you may be right. I hope I have not blown it already with our immunologist. But I can always let them tell me "it's not lyme" and then go see the LLMD.

 

Susan

[PacificMama]

Yes, you need to tell your regular ped about this... these are serious infections! What most of them (non lyme docs) are afraid of is you asking him/her to test or treat for lyme. They usually are more than relieved if you tell them that you have a specialist that will be doing the treating. Just tell them that you have a lyme specialist, but you want them to be the general ped for all other matters. And have them note the diagnosis in the file, and that your child is being treated with what particular abx.

 

I ended up leaving our original ped during the time my daughter got diagnosed because he so botched everything (but I should have left him before that). So then when I went to find a new ped, I made an appointment to talk alone with the doctor. I explained our situation, stated what I said above, and it was fine.

 

Good luck!

[matis_mom]

In Charlotte NC, use extreme caution when mentioning Lyme - everyone here is still VERY rattled by the Lyme lawsuit that put a doc out of business (he is featured in Cure Unknown). Bad thing to mention Lyme in NC. Gets you right onto the nutty list. I'd just go see the LLMD and then decide what you want/need to tell others. You can always call it PANDAS . Wierdly, that is more acceptable.

 

Sorry to be a downer, just have been down this path on the adult side (no so much on the kid side by the way).

Must be a southern thing... Here in Northern VA, I just made an appointment with an ID doctor who is very Lyme Literate but he works out of a regular practice attached to a big hospital. The friend that recommended specifically said, "do not mention Lyme when you make the appointment as he is already getting into trouble with other docs at his practice." How sad! So I called and I'm being seen for "recurrent strep", since after a month on abx I'm not feeling any better, tonsils still huge, throat a bit red, ear pain off and on...