Wilma Jenks

Who is best to treat for Lymes, Dr. Beal or Dr. Jones?

my child has clostridia, has 166 on cam kinase test, high ammonia(???) also a possitive band 41 on test. still have to look into lymes. scott smith is starting by treating the clostridia with vincomycen. i just spoke to dr. beals and he said that we should be going after a couple things at once and mentioned injecting her with antibiotis or something too. he mentioned dr. jones in conneticut for lymes, but he also said he can treat lyme too. can someone help me figure out a direction to go in. do i add another doctor to the mix or just have scott treat the clostridia for now with vincomycen?

This is part of what I got back. Do you think it suggests PANDAS, Lyme or what??? Cam Kinase II score 166 Normal control was 87 Positive serum control 266 This is a known positive sample we run to ensure the test is working correctly. This number does not reflect any information about your child, it is strictly used as a reference number

This is what I have. Does this look like it could be PANDAS Lyme or what??? Cam Kinase II score 166 Normal control was 87 Positive serum control 266 This is a known positive sample we run to ensure the test is working correctly. This number does not reflect any information about your child, it is strictly used as a reference number

He mentioned steroids. He wants to treat clostridia first. He wants me to read up on the IVIG and plasma exchange. He thinks she is a candidate for IVIG, and not plasma exchange, because she does not have any tics.

The person treating her is suggesting it. Not sure if we are suppose to mention names. I think he is very knowledgable and I am not putting him down. It's just so new to me. All of this! I heard IVIG and plasma exchange are VERY risky. I need to research and think about it all.

The "One Test" from Genova, was showing Clostridia. This is just all too confusing. Sorry for complaining but the person treating her is talking plasma exchange. It is a shock to me!!! and my family thinks I am crazy to even consider any of this!!! Need to vent.

Actually, I thought I had the cunninghan test available to post, but I don't.... but the person treating my child said to post on the PANDAS board, that my child is a 166 and you guys would know what i am talking about. he said the highest is 188 or something like that. does this mean anything to anyone?

She tests high for PANDAS and has Clostridia. They are suggestin IVIG or Plasma exchange. She is quite stable right now on the low dose of lamictal and low dose of seroquel and lamictal. I am not sure if I want to risk one of these procedures. I need some advice.

have you scanned and posted something before? it does not work here. did it work for you?

i am trying to figure out how to post this test. Or if i have to type it in, which parts to show you. There is a lot to these tests

i wish there was an easy way to post this stuff? do i have to write each thing individually?

She got the Cunningham test back and the One Test from Genova Diagnositics.

I would just like some input, if someone would be so kind.

she was only on an abx. once in her life. she has always been very constipated and gassy. my main problem is she is aggressive, agitated and mean. not sure if the clostridia is causing all of this.

I am told that my girl has very high levels of clostridia. How can that be, when she has never been on antibiotics until recently, and she does not have any diarreah? Any advice? or comments?

it was called the "one test". it was a urine sample

doctor called and said urine test has very high levels of clostridia. perhaps this is cuasing someo of our problme. not gettin my hopes up again.

we are having this test done, because there was a possitive "band 41" on her labs. is this the next step we should be taking? any comments or advice, before we screw up again by using the wrong lab or whatever!!

who do i go to... to look further into lymes or other infections? is it a lyme speciallist or infectious doctor. i am in nj, and need someone to go to. my child is really sick and raging with any med/supp. i give her. please give me some suggestions or a specialist i can go to.

isn't pandas a cronic infection? just like lyme's disease?

she is 11, and we have been to dozens of doctors. traditional and alternative. no luck. what is an LLMD?

what is provocation?

I am in NJ. Can't go far. I can't get my girl in the car.

can anyone give me some names of lyme specialists? also, are there any that would look at labs without us going for a visit. we would pay of course.