kferricks Posted April 17, 2011 Report Posted April 17, 2011 So, how do I go about finding an LLMD? Do any PANDAS moms have thier doctor treating it, or have you found another doc? help?
ptcgirl Posted April 17, 2011 Report Posted April 17, 2011 Hi! We are pretty new to the Lyme thing too. My dd11 has pandas and lyme with coinfections We are traveling from Georgia to ct to see a Lyme doctor and a pandas dr. Finding a Lyme literate dr seems to be a task, particularly that treats kids. I'm sure veterans of this board will help lead you to a good one. What state are you in?
kferricks Posted April 17, 2011 Author Report Posted April 17, 2011 Hi! We are pretty new to the Lyme thing too. My dd11 has pandas and lyme with coinfections We are traveling from Georgia to ct to see a Lyme doctor and a pandas dr. Finding a Lyme literate dr seems to be a task, particularly that treats kids. I'm sure veterans of this board will help lead you to a good one. What state are you in? I am in South Western PA. My Pandas doc is in CT too. Hoping I don't have to travel as far... when was your child diagnosed? My DD is on Biaxin at the moment.
momaine Posted April 17, 2011 Report Posted April 17, 2011 We travel to CT for both PANDAS doc and LYME doc. But thankfully, we've managed to line up appointments now so we can hit both offices in one trip. Ilads.org can help you see if there is a LLMD closer to you. Doesn't Dr. Ann C practice in Pennsylvania? That would be very cool.
ptcgirl Posted April 17, 2011 Report Posted April 17, 2011 Hi! We are pretty new to the Lyme thing too. My dd11 has pandas and lyme with coinfections We are traveling from Georgia to ct to see a Lyme doctor and a pandas dr. Finding a Lyme literate dr seems to be a task, particularly that treats kids. I'm sure veterans of this board will help lead you to a good one. What state are you in? I am in South Western PA. My Pandas doc is in CT too. Hoping I don't have to travel as far... when was your child diagnosed? My DD is on Biaxin at the moment. She was diagnosed with pandas in 2006, but with Lyme in early March. She is currently taking zithromax, augmentin, enula, rifampin, and tindamax. It may be worth it to travel out of state for the Lyme too. Hopefully some PA people will let you know if they have found anyone worth seeing. I though pandas was bad. I think Lyme is far worse. My dd has a new saying "my life sucks.". I can't disagree with her. I just keep saying things will get better.... I hope you have better luck than we have.
LNN Posted April 17, 2011 Report Posted April 17, 2011 Under Helpful Threads, there's a post about finding an LLMD - go to the "contact us" tab at ILADS.org to ask for a referral or some of the other sites mentioned under the thread. Our CT Pandas doctor helped us test for lyme, but now that we're on this path, we use an LLMD. As with Pandas, there are aspects of a disease that are best treated by a specialist. If you haven't read Cure Unknown yet, I highly recommend it. It explains a lot of the landscape in one concise, easy read.
kferricks Posted April 17, 2011 Author Report Posted April 17, 2011 Thanks I am going to check out the help topic. Oh I read the book.. I have someone local who is calling me tomarro. She has chronic lyme and sees someone in PA. Do most of the pandas/lyme kids stay with thier panda doc and see both , or do most take a break from the panda doc until they have the lyme under control?
JuliaFaith Posted April 17, 2011 Report Posted April 17, 2011 It seems as though we may be treating the lyme and PANDAS at the same time. Others may be able to give more insight into this. We still visit the PANDAS dr. about once every 3 months just because my ds loves to see her but she really does not have anything more to offer my son in the way of treatment. This is why we found a LLMD and changed our course.
Suzan Posted April 17, 2011 Report Posted April 17, 2011 Hello and HUGS! We found our first LLMD by writing to ILADS http://www.ilads.org/ and they sent me a list for my state. If Dr. Ann Corson is in PA, I would go to her for sure if possible. We see a neurologist who treats them for pandas but who is taking over some for lyme. He can't do as much as we need though (hospital rules against lyme) so I'll probably be taking them to my LLMD soon as our old LLMD stopped practicing. I have been on treatment for 6 months, my dd9 for 4 months and dd8 for 2 months. We have seen various levels of healing so far and I have high hopes for us all. Susan
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now