Starting this Journey?

[Dedee]

Hello everyone....I am mostly a PANDAS / PANS poster but am beginning to suspect that two of my kids PANS symptoms may go beyond the current Myco P. diagnosis. My 12 year old son has had symptoms for several years in response to strep but usually symptoms would resolve with antibiotic treatment. My daughter has had "mild flares" at different times during her life but her huge flare was 15 months ago after a flu mist (she is 8 now). It was at that time that we found out that both my middle son and daughter were IgG and IgM positive for Myco P. They have both been on antibiotics for about nine months. First Zithromax, then they switched my son to doxycycline and my daugher to biaxin. My son has since had myco p. titers that came back in the normal range but his OCD and anxiety symptoms have not resolved. My daughter went on to receive 2 HD IVIG's and then most recently a five day round of IV clindamycin and is on oral Minocycline. She did wonderfully last summer after her IVIG's but after a few months started a downward spiral that we can't seem to pull out of. She is still IgG and IgM positive for myco p. Her strep titers are only barely elevated. She has had full strength antibiotics for that and is now on Zith 3 days a week as is my son. I'm just not sure where else to turn if not to look down the Lyme road. I know that Myco p. is often a co-infection of lyme, so I guess it makes sense to start there?? One of the local doctors that we have seen who is a "PANDAS believer" and also listed as an LLMD really has me confused. Since he was on the list as an LLMD, I spoke to him about it and he really didn't encourage me at all. Just said that the antibiotics they were on already would treat Lyme so there wasn't really any point.

 

So I'm very confused about the whole LLMD thing. Like I said, I have actually seen 2 doctors local for my children's PANS and both were also listed as LLMD's. But neither of them really seem as aggressive about testing like some of the things I read from this board. They were both more wishy washy about how it's not a real definitive diagnosis and we are already on antibiotics and so forth, so then that makes me question myself. I don't know, maybe we just don't have any really good LLMD's in our area. I even went to ILADS and got names but there weren't any others listed for Tennessee. We have appointments scheduled for both kids to see Dr. B in late March. This will be a 13 hour drive for us, not to mention the stress of riding in a car that long with 3 PANS kids.

 

If anyone has any advice or experience that might be helpful to this situation, I would love to hear it. Also, if you know of any really good LLMD's in or around the Tennessee area I would greatly appreciate a heads up on that. You can just PM me with that info if needed. Thank you all so much for reading this far and for any help you may be able to offer.

 

Dedee

Edited February 13, 2012 by Dedee

[momofgirls]

Hi Dedee, I sent you a PM.

Kim