mommakath

Susie, He has always been a great sleeper, infact, usually too sleepy! Once we start the Tindamax, sleep issues. Tink it's herxing only because it started as soon as my daughter starting herxing as well - just in different ways. She has lots of wierd dreams on TIndamax nights. Still having issues but there may be a slight improvement. Thanks!

Our stories are very similar. Dr. J explained to me that those narcolepsy results are something he sees a trend of in lyme / pandas kids. He guessed tey would come back positive on our kids as well. Yes on one, No on the other. But, the NO kid is really struggling. All intersting! Like how they think out of box and notice trends!

So, any of you had IVIG? How do you handle the normal steroids given before it? My PANDAS and LYME docs have talked and worked it out.....just curious about those of you who have gone before me. DS9 is scheduled in April.....anyone seen any positive results from IVIG? THANKS!

Well Said! Everything has a beginning and this kept me from getting PANDAS work-up for years! But, Guess what? PANDAS and LYME!!

CBT / ERP Therapy....a must for OCD and OCD Symptoms. Have used 2 intensive programs. Dr. Eric Storch used to be at UF Shands in Gainesville, Fl but noe at UF in Tampa at Rothchild Center. His team even does it via Skype - a lifesaver. Sit and home on the computer and get therapy from one of the top specialists on OCD. UF/SHands also has excellent program still - contact is Joe McNamara. Can google both places.

My sweet ds12 has started herxing more and more and it is not on the weekend....more mid week as well. Thinking we may have to lower dose.

Okay....ds9 on Tindamax on weekends only. Takes Azith and Bactrum everyday. This is second weekend of Tindamax and he could not get to sleep at all last night - literally, eyelids open all night. Usually this kids sleeps anywhere and everywhere! Also started the bentonite this week, 1 tsp. each evening. Is this part of herx? Thanks for input!!

We have done intensive with Dr. Storch when he was at UF / SHANDS in Gainesville and now in Tampa. Both programs are TOP NOTCH! He also has a SKYPE therapy program which is wonderful for follow-up sessions - especially when you live a distance away. We have done the group that is now at Shand's and they are still great. Both programs have fellows and grad students.

Any way you can get to Dr. B? VERY impressive immunologist who totally gets PANDAS. Many on this forum see him. He runs immunulogical testing and those are tests a non-pandas kid would get. It helps prove the immune side of it. We have been VERY pleased with him and we started with a nuerologist but felt it wouldn't hurt to get an immunologist as second opinion. Because we do not have any nuero symptoms, we are sticking with him. THe more I walk this out, the more I wish I'd gotten to the experts sooner!!

Sorry for your struggles! Do not give up hope! Our Igenex and coinfection was also negative on my ds9. However, Dr. J ran testing and so far the Bartonella has come back positive. He firmly believes that my son has Lyme and said that some of the sickest kids test negative. We started the treatment and I see a huge change in my son this week. The old kid is finally reemerging. I almost didn't go see Dr. J after Lyme testing thru Igenex negative. Then, after meeting him and hearing him, I sstill had my doubts. But, everything he said he thought they would find positive, has come back positive. He is even wanting to do tissue testing from upper GI we had few years ago chasing issues. He says he is sure it would also come back positive. The man is amazing and so far....he's been right on every time. Still awaiting a few test results but we're finally improving!! If you have any other infection along with PANDAS, the PANDAS will not clear for any length of time without getting all of the underlying infections cleared as well (Myco P, lyme, tc....).

That's my story too!!

Interesting to me. My dd 12 started Tindamax on weekends only last weekend, second weekend this weekend, and has started having very vivid wierd and old OCD related thought type dreams. I was wondering if this was part of herx as well? She has bartonella and PANDAS. Also, had her first mild panic attack in months last week out of the blue. How long does herxing typically last?

Well, after seeing Dr. B and Dr. J last week and really hoping for answers, both PANDAS kids testd positive for Lyme coinfection - Bartonella Henselae. Interestingly enough, Western Blot Lyme testing and co-infection on my sickest child came back negative by CDC and Igenex standards. Dr. Jones said he wasn't surprised....some of the sickest kids come back that way but that he was positive this would come back positive - and it did. He did some other type of testing. Still more to come in but I am so grateful for all the encouragement to pursue this. I had my doubts as DD has been at 97% after steroid burst, Augmentin XR, and Zithromas for Mycoplasma. But.....I am so happy that 100% is around the bend for both of them!! What a journey!! Now I am wondering about the herxing???? My DS has been symptomatic so it's not as hard as it will be to see my DD, almosdt totally symptom free for 6 months, revert to old ways. So what do they give the parents who have to sit and observe all this??

Not sure of the lab he used for that particular test.....he tested with blood and urine. I know the gal said it was blood test .........it was not Igenex. We are having some additonal testing done on them thru Igenex but this was not them. Once I get the all the results, I can let you know. Okay, now......herxing.....what do I expect? My DS has been symptomatic for last 2 weeks but my DD has been almost symptom free for 6 months on Augmentin XR alone. I hate the thought of her going backwaards!

Well, after seeing Dr. B and Dr. J last week and really hoping for answers, both PANDAS kids testd positive for Lyme coinfection - Bartonella Henselae. Interestingly enough, Western Blot Lyme testing and co-infection on my sickest child came back negative by CDC and Igenex standards. Dr. Jones said he wasn't surprised....some of the sickest kids come back that way but that he was positive this would come back positive - and it did. He did some other type of testing. Still more to come in but I am so grateful for all the encouragement to pursue this. I had my doubts as DD has been at 97% after steroid burst, Augmentin XR, and Zithromas for Mycoplasma. But.....I am so happy that 100% is around the bend for both of them!! What a journey!!

I thought the same but Dr. J said they keep those tissue samples in parrafin wax and (I believe he said frozen) for 100-115 years. Kinda creeped me out. How does he know these things???

School Administrator: So....is this a real doctor or one of those other doctors you see? Great support there!!

Yes Nancy! Five great days is good. That's before starting any new meds and 4 weeks after DS took himself off Zoloft. As long as we are not around other people and not having to go to school and face real life, we are good. The stress of life is too hard for the little guy. Right now we are stranded in Hartford......lots of snow and ice and just waiting to get home. Dr. J did tell us about herxing and told us how to handle it by adjusting dose and days we give. Actually, a little herx would help me know....just a little required. LOL! We are doing coinfection testing and repeating western blot of DD. Blood drawn and sent out yesterday :-).

Bill, DD had OCD / panic for 5 years before diagnosed as PANDAS. Once we did the steroid burst and Augmentin XR for a month, she was a totally new child. All the things she lost to the disease, she had regained. Dr. L was our diagnosing doc. Then, Dr. B found mycoplasma, treated it by adding in Zithromax for 21 days and she said she felt like her mind was even clearer. Her western blot IgG and Igm were both positive by CDC and ILADS standards but it tool us 7 months to get in with Dr. J. She is responding so well that IVIG is not called for. Some kids to respond to the burst and Augmentin and she is one of them. Thankfully!! She is blossoming with a few blips every now and then (OCD / panic) that are almost silly to mention in comparison to where we were. DS followed same regime and bottomed out once steroids ended. He started rages and general chip on the shoulder. Anxiety was worse than ever - sitting outside school in panic mode for 5-6 hours a day, just trying to get in. CBT / ERP was not helping as he gets so bad he can't use his skills. Noticed slight improvement on Zithromax, but not major. Both kids have very low IgG immunity numbers. But, when DS is exposed to anything, he exacerbates. When he exacerbates, it's like it's worse than the last exacerbation. Then there will be a few days of that to a week or so of that and then this switch turns off and he goes back to being pleasant. Even when pleasant, he's not the happy go lucky child we had 3 - 4 years ago. It's like he's a volcano liable to explode any moment. So, a long-winded explanantion for why she doesn't need it and he does. My son is also on Augmentin XR and Zithromax daily since middle of December plus Tindamax but only on the weekends. Actually more complicated than that as he was on that combo in October, then something else was tried but we felt that it was not as effective so went back to it. Our local doctor added minocycline when his OCD started kicking up last month. We noticed increased anxiety each weekend for the first couple of months (assume tindamax). Now, not sure we see much except maybe his eyes get that purple circle underneath by Sunday morning. When we asked how long he would be on the Tindamax, doctor said "Until you don't see a reaction anymore." Our next appointment is early March; I'm guessing it will be time for a change. IGIV is being recommended by Dr. B. but you will find that a number of other doctors believe that the immune system will eventually recover after the Lyme has been successfully treated. We are still trying to decide given the persistence of his OCD. Do you know why IGIV was recommended for ds but not for dd?

Nancy, Thanks for the input. We've had 5 great days with our son and so the doubt settles in, again. It's easier to move forward quickly when exacerbated! And, my daughter is at 97% with a few thoughts and panic attacks. But, they are much more manageable and don't paralyze her now. As for the tissue, Dr. J said that tissue is the only definitive test around. He said the lab keeps that tissue for 100 years in parafin. He asked me to contact the lab and have them send him 5 slivers of colon or stomache samples. He would then have them analyzed for Lyme. I need to call and be sure I understood all that correctly. We were numb by the time we walked out yesterday. Thankful for a place to gather info.

Okay....my fist lyme forum post. I'v been more on the PANDAS side of things. Two kids (dd12 and ds9) both with PANDAS and now with Lyme. Dr. J recommending Tindamax in addition to Augmentin XR and Zithromax for both. Then throw in IVIG for ds9. Anyone else used Tindamax and results? Also wants us to get tissue samples from GI procedures done 2 years ago and send them for PCR testing to him. Ds9 is serotologically (sp?) negative but he says he is not surprised. Anyone ever done that tissue sampling thing? Thanks! I have a feeling I will have more Lyme related questions as we move forward. It all kinda scares me. It's that "invisible disease" doubt that I guess most of us wrestle with at times.