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He is the present of ILADS for Lyme literate doctors. If you think Lyme or co infections might be an issue he might be a good start . Due to the complexity of your situation you might want to consider Dr Horowitz in New York. Dr Horowitz describes his approach on his book "Why can't I get better?" and describes combination of conventional and herbal approaches

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Thanks HopeNY. Dr. Cameron had time tomorrow so I think I'll go there first. Dr. Horowitz looks great, but I don't want to wait. I guess we'll see Dr. Cameron and see where that gets us. Someone also recommended a DR.Phillips in CT.

 

I think I'll order the book.

 

Thanks!
T.Anna

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Dr. Cameron is very experienced and well respected, and I think it's a good idea to get in quickly, my friend saw him and was happy, he's just not integrative. You might want to consider putting yourself on Dr. H's list in the meantime, even if it's the PA list. His book is very interesting and he seems to have extensive experience with many different types of protocols. Someone recently posted a paper Dr. Cameron co authored on PANDAS/Lyme, can't recall which post. I actually waited a year to see our current LLD and saw someone who we could get in quicker to in the meantime.

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Good idea. We have an integrative neurologist, but I'm at the point where I think he may need refampin or IV abx and she's not so proactive with that stuff. Dr.T is amazing, but I really want someone who can give me a clear plan for the Bart specifically and Dr. Cameron was mentioned at our last appointment. The Bart hasn't shown up on any tests, but DS16 sprouted the rash a few months ago, so I'm hoping that the fact that the rash popped out is a blessing.

 

So very complicated.

 

T.Anna

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HopeNy, DS16 also hasn't tested positive, but he has those marks on his torso and back. He also has low WBC as well as psych issues, foot pain and sore throat. We are going tomorrow, it would be nice to get some answers...pricey though.

 

T.Anna

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I'm new to PANS but experienced with Lyme. Is there more to your sons treatment? Another antibiotic? Is Lyme confirmed and treated in the past? Has there been a cyst buster on board?

Even if treating just babesia, Artemesin should be part of treatment 10 days a month. Maybe he is waiting to see how herxing goes.

I had the most recovery with Bart while treated with levaquin. Rifampin works, but levaquin was a game changer.

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Thanks Ktdommer. I was told that levaquin is not given to anyone under 18. DS16 is currently on a ton of other meds from our PANS journey: Augmentin, Valtrex, minocycline, nystatin, FLAGYL, synthroid, Reservatrol (Japanese knotweed), OLE, thyroid Support, Meriva, Reishe, Sida Acuta and Hawthorne (and the newly added Azith and Mepron).

 

Did refampin help you?

 

T.Anna

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