P_Mom

Sorry...meant 58.. That is a negative result PMfry and coke.....even with IGENEX! Please don't let others make you believe otherwise!

58kDa is unknown.....band 41 ia also non specific to Lyme (even Dr. Jones tells his patients it is of no consequence)....I say you have a pretty clear NEGATIVE Lyme result.

Absolutely not! That is a postitive thing, huh!

Okay....3 days post fever and no PANDAS symptoms.... (woo-hoo) Today...my husband and older son are vomiting.. (and we had a picnic today..) Does it ever end?? (I wonder when I'll be down for the count??)

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Okay..sorry..but, why is IGENEX the gold standrad in Lyme testing? Anyone got any reason/data to prove they are better then the rest?

Hey Fixit! You are not being a bummer...that is what I was looking for...opinions and experiences! I would never use the word healed for my son.....possible further healing and less reactivity....hopefully....healed....no way! It is still in my mind that this is just a different illness that he just doesn't react to...we'll see with an URI. I am hopeful, though! Gotta have hope..right? Still holding good here....vomiting,etc., fever gone...still no symptoms. I'll update tomorrow!

Thanks for all the replies! Vickie....the last time he was sick was in the Winter......and he did have a mild increase of symptoms with it, as usual. This is really mind blowing for my husband and I to see nothing happening with him as it did every time for the last 3 years. I sure will keep an eye on him...and my gut says nothing will happen if it hasn't already just based on his history...I pray I am right! I want so bad to think of this a a leap forward....but, it is hard to get your hopes up with this PANDAS stuff. The big test will be when/if he gets sick this school with an upper respiratory infection...if I see nothing then....then, I'll be dancing a jig. He has never had this kind of bug before...I know...I don't know how he escaped it for 8 years! That is why I am hesitant to ....well....dance a jig. He is already feeling better now and the fever is gone...so, yeah...one day thing! Mom to Alex...was the ramp significant and noticeable? Or, just mild? Peg....wow....your post always blow me away! I hope so much your daughter sees improvement as time goes by. I will be getting my younger sons t&A soon....then perhaps will run Cunningham on him again. Wonder if there would be a difference. But, then again, if there is....who is to say it was from t&A and not just time and healing? Ahhh...such a mystery.

Okay, so of course it didn't take long for my son (younger one..more severe PANDAS) to get sick since school started....4 days actually. Anyway, he complained of a belly ache in the middle of the night Thurs., then started to vomit in the am. He was wiped out all day vomiting a little, then started to run a fever. Today, the vomiting has gone south, if ya know what I mean. This came out of nowhere because I can Always tell, from the last 3 years of PANDAS, when he is getting sick because of an increase in PANDAS symptoms BEFORE physical symptoms of illness hit...and sometime they, the physical symptoms don't even surface, just the PANDAS does, but, someone is always sick around them when it happens. THis time...no increase of PANDAS symptoms before illness, and, no increase during....first time EVER! Here is where I need opinions. Do any of you have PANDAS children who increased with PANDAS symptoms because of a stomach bug with fever? I certaintly want to think of this as a good sign..of some healing, but, I think the lack of PANDAS symptoms could be due to the type of illness he has. Although he always increased in PANDAS symptoms prior to this with any illness, this time he didn't, but, this is his first stomach illness in the 3 years also. Follow?? Thanks for any input! Also, does anyone think tonsil removel can affect Cam K results? Has anyone had Cam K done proir to T&A and then , say, a year after? I was speaking with Dr. Latimer the other day, and she posed the same thing. (before I said anything) She commented on how my older sons Cam K was much lower than my younger sons.....she wondered if that could have anything to do with T&A removal because my older son has his out...younger son doesn't (yet..we have the script..just need to schedule) She said she has seen a few kids fully recover after t&a? Just some thoughts today!

PANDAS mc nug fry coke. No, we did not give our boys a heads up...we didn't want to mess with what Dr. K was doing. It is funny... like the others said, he was calling my boys girls names and even brought in some girl toys in the examining room for them to play with. They were both sitting on the exam table...and neither would touch the toys...each kept flickin/sliding the toys back and forth between themselves. Some things he said were so off the wall...it is funny when I think of it today. My boys faces were classic...like..."is this guy serious." Then they would look at myself and my husband with a "this guy is nuts" look. But, they did fine......don't get us all wrong...he is good at what he does! And absolutely yes....he is totally serious with the kids when he does these things...he does not laugh about it or let on about anything. He wants to see something from them. My kids can do great in a docs office (some know how that goes) and, I was afraid that dr. K wouldn't see a thing because they were doing pretty well by the time we got to him. He did bring out some tics in my younger son and he commented on it...to him...and, to us later during the consult (which the boys were not at) I would just say trust him....you are in good hands. And, I gotta ask....how did you choose your user name???

Wellll.......my kids were perplexed to meet a doctor like him....they thought he was the wackiest guy they ever met! My husband and I were taken a bit back ourselves, but, we, like you, knew to expect someone/something different. He is very knowledgeable on PANDAS...and he sat with us and let us ask all questions we wanted. He is a no nonsense kind of guy...that is for sure. What he does that will strike you as odd is he tries to make your child "uncomfortable", so to speak, by doing and saying some weird things. He is trying to "bring their symptoms out." There is a method behind the madness! We really did like him and would recommend him to anyone....things settle after that first meeting.

Vickie...that is what Dr. Cunningham told me....that there is not necessarily damage..but, the brain can get caught up in a cycle and then learn the dysfunction caused by PANDAS.

2 years ago, I had a positive Elisa of 1.18 and a positive western blot IGM bands 41, 23, and 39 reactive. Completely negative western blot IGG. (Lab. Corp.) Docs are still on the fence and at odds as to whether I had/have Lyme because of the duration of my illness and my totally negative IGG when I was at my worst...I'll never no for sure. Today, my Elisa is negative and so is my western blot...only IGG band 41 present. (Lab. Corp.) My boys have been testd a couple of times through Leb. Corp. also. Both showing negative Elisa and negative western blots with only band 41 present....41 IGG for older son...Band 41 IGM and IGG for younger son.

Chemar....absolutely agree. It has been around forever, I believe, but, is just recently being recognized, diagnosed and treated. The number of cases will continue to grow as the disorder is increasingly recognized.

Yes, Vickie is right. It hasn't started yet. I was contacted and did a practice phone screening with them. They wanted to see how their screening was working and how the parents felt about it. They ask you a bunch of questions, then, they score you. If you fit in the range of severity they want for this IVIG study, you will probably qualify. I was told to answer the questions as if this just started with my younger son back in 2007 when he was BAD. He scored well within' the range for admission to the study....but, this was just practice. He wouldn't qualify now. One catch is...your child has to be in acute initial onset, OR, in first major exacerbation to be considered.

Jill....I need to edit that. I was attempting to put up pictures...I had to put in the text first (well, I sent Vickie the text because my computer just wouldn't stop freezing up)...anyway...they have some sort of crazy system where you can't upload pictures from your personal computer. Don't know the ins and outs of it....Vickie could explain it better. The pics are posted on the Pepsi FB page though. Sorry.

JohnsMom... Wow...we have the exact same thing here with my older son. He gets a groin rash from time to time. Also, he gets a rash on his butt and thighs from time to time, also. We have never seen the doc for it because my husband has an extensive history of excema and as soon as he first saw it...he said excema. My husband has a prescription cream (steroid)and my son puts it on and the rash is gone by the next day. It appears here and there....usually when he has some kind of illness or allergies are kicking in...and tics appear a bit. I have always believed it is just another autoimmune thing that happens with his PANDAS because we only see it when he is ill/allergies. (another autoimmune problem) And yes...it is ITCHY!

yeah....I thought you needed to get some work done anyway! And I was "out" a few threads ago! (I should be cleaning my house! )

I don't begrudge you of any of your choices...everyone here does what they feel is best for their kids. Have I ever told you that you were doing the wrong thing going down the Lyme route? I don't know where some of these statements come from. I made the "leap of faith" that the RF protocol was effective in PREVENTING STREP.....which, in the majority of cases, it does work. It has worked for us for 3 years. I never thought of it as a treatment protocol for PANDAS remission......however, since it is keeping strep at bay, it is keeping PANDAS at bay....same mechanism as RF and heart damage it seems.

Kim...here is the link. It really doesn't give you answers.....who knows what he was treating...but,regardless..... the kids got better! http://www.hartfordadvocate.com/featured-news/dr-charles-ray-jones-is-facing-criticism-for-his-treatment-of-chronic-lyme-disease

SF Mom...just to clarify what my kids are on. They have NEVER been on high dose long term antibiotics as a treatment for PANDAS. They are basically in remission and have been for a while now......they take low dose prophylactic antibiotics to PREVENT strep(at times I totally take them off when exposure is not high)...they are NOT on antibiotics to TREAT their PANDAS. This has been a proven treatment in preventing strep in RF patients....it is basically the same protocol. So that I went with.....they have been implementing this protocol and having success with it for decades.

Kim...I'll send you the link to the article. But, yes, in one part of the article it states how a mom brought her child in with behavioral symptoms and she got better on antibiotics. Give me a minute to pull it up.

If you would read all my posts, you will never find once that I said Lyme could not be the root cause of some of these kids problems.....never once. Yes, so I was saying the guy charges enormous fees...so what? I didn't say anything else about him. Not a bashing of him in the least...not even close. As far as being fearful...aren't we all a bit?? Isn't it fear for your child's health and future that drove you to have sought all the treatments that you have and to spend all the money you have? I have been taking all this in for the last 3 years and have not gotten my kids any treatments that I wasn't convinced about, weren't proven, etc., and they are both doing well. Things change quickly! We all take valuable time to post and subject ourselves to misinterpretations...all of us! And, it is a common goal among us all...we ALL want our kids well...we ALL are trying to help...we ALL need to be able to present all sides. Like Faith said...."I'm out!" (of this one...I have said my peace)

Indeed, very interesting...and good questions ajcire!

Elizabeth..... Agree!!! Great to hear about your son and school!