beeskneesmommy

DS was tested for Gangliaside GQ1B AB (IGG), EIA Gangliaside GM-1 ABS (IGG + IGM), EIA GM-1 AB (IGG) GM-1 AB (IGM) I am copying them as I see them on the labs. I have looked this up in Wikopedia, but can someone please explain the significance and implications of these being "out of range"? I get that they have something to do with immune function, but I need sophomoric plain English to understand this one... Thank you!

"Rabbit hole" - consider that perhaps it is yet another layer of this complex problem. I thought that DS5 was "straight" Strep:PANDAS and then found out last week that he tested + for Lyme & Bartonella. I guess I should have been devistated, but I looked upon this development as more information with which to help him. We have been using only 1/2 of the arsenal up until a month ago - 1 abx aimed at PANDAS, whereas what we needed was treatment aimed at PANDAS + co-infections. I am going to put my faith in the hope that we have uncovered something that will assist us in recovery. Much warmth and good stuff to you and yours! -Kath

Eljomom: IgeneX picked up Lyme whereas the typical w. blot did not x 2. Also, surprise!! picked up Bartonella. Results just cam in on the 22nd so now we have more info and the aggressive abx protocol is even more justified (and working)!

Dr. Dennis Bouboulis in Darien, CT, has helped a lot. He is very thorough in testing for co-infections, which is necessary for choosing the appropriate treatment. He offers IVig as well, in office. Dr. Elia at Childrens Hospital of Philadelphia, is a great place to start and if your kiddo is very sick she can administer PEX or IVig on Site. She can be quite conservative, however, which is why we moved on to Dr. B for more aggressive and comprehensive treatment. Dr. Elia did, however, help us immensely through our DS4's acute episode and got him moving forward last September.

My DS4 had upper body/arm tremors on and off for several months after his acute PANDAS episode last Sept. These usually occurred when at rest, often when laying in bed trying to fall asleep at night. I did not view them as seizures and I felt that they were another neurological symptom associated with the disorder. As the PANDAS symptomology has decreased, the tremors have disappeared.

SF Mom: Have you utilized "Envita" for treatment? This is a great video and informative, and I am wondering if you feel that "Envita" is a viable source for treatment?

In addition - prior to finding out DS had anything other than Strep:PANDAS, the specialist we were seeing was extremely conservative and resisitant to the idea of steroid taper because little guys (I am thinking age 7 fits into this) can have severe psychiotic symptoms as a result. I don't want to upset you, but it seems like it would be a really good idea to slow down a little and seek out a 2nd opinion from a specialist.

NMom: I thought my son, almost age 5, was a straight case of Strep:PANDAS. He was dx at age 2.5 and had a severe acute episode almost 1 year ago last Sept., after a T&A with Strep infected tonsils. He was put on Augmentin from 9/10 - 1/11 and when he plateaued, switched to Cefdinir from 1/11 - 7/11. We went to see Dr. B in CT in late July. He brought up Lyme and although DS was tested x 2 with a regular lab over the past year, lo and behold, Igenex found both Lyme and Bartonella. Prior to the testing, because my son had Myco walking pneumonia last Oct. 2010 and his titers were still high and he was not fully recovered, Dr. B. put him on a combo of Augmentin 2 x D and Azith 1 x D. For us, this has been a magic bullet. My son is a completely normal, healthy, rowdy, fun, typical kid. His recovery has been miraculous. I know that these "recoveries" don't always last, but this feels very different - he suddenly started drawing with talent, has begun early reading and writing, cannot get enough of it in fact and is right on both academically and socially according to his preschool teachers. The major test will be when we taper off, but this combo of abx has changed out lives. Since you are looking at Lyme, I thought I would share with you, although I recognize that our kids and our situations are different. My biggest recommendation would be to take a look at trying to get to Dr. B in CT. It's a long way for us, we are in NC, but my God, it has been worth its weight in gold!

Thank you for this info. DS (almost 5) started with classic Strep:PANDAS 2.5 years ago, had an acute episode last Sept. after a tonsillectomy while strep infected. We have been up and down, gradually getting better on 2x D Augmentin from 9/10-1/11, then switching to 2 x D Cefdinir from 1/11-7/11. We saw Dr. Bouboulis for the 1st time in late July because DS started to have more dramatic PANDAS presentation intermittently after a fever in early May. He strated a regime of Augmentin 2 x D and Azith 1 x D on 7/27. After initial herxing, he has been completely asymptomatic for almost 2 weeks now without a glitch. Last week I had a teleconference w/Dr. B who informed me that his IgeneX results found Lyme and Bartonella (not to mentiont he Myco that we knew he had last Oct. with a bout of walking pneumonia). I did not know that Bartonella influenced further OCD and irritibility symptoms. This is good info. Hopefully, we are kicking it all out and will not have to go on to IVig or PEX. He's just so little!! Warm wishes and positive Chi to you all -- Kath

Good luck. I know - it's hard enough and then the added extras like this make it even harder! Hopefully his somach will calm down!

DS4 was on Omnicef from mid Jan - late July. During that time, he had 2 runs of Azith (typical 5 day "Z-pac") and did not have a problem. I made sure to give the Omnicef AM and PM and the Azith at lunch. He has now been on Augmentin AM & PM and Azith at lunch daily as well for 4 weeks (this has been a magic bullet and he is completely asymptomatic; hope it lasts)! He had initial loose stool but his body adjusted well and aside from occasional evening tummy aches, no nausea. Maybe your kiddo picked up a bug?

I had the same feeling of skepticism and was very forth right in asking my son's PANDAS doc (who ordered the Igenex). He stated that he has lots of patients who come back negative for Lyme as well. It does make sense if you look at articles about the CDC approved Lyme blot that is typical of regular Dr.s. It tests for only 2 genobands whereas Igenex tests for multiple genobands. Igenex clearly disclosed and explained on DS's labs that what they considered + were considered - by CDC standards. I am thinking that perhaps because my only point of reference for Igenex testing is with people on this Site, it makes sense that it feels like "everyone" has + results.

I couldn't believe that my son tested + for Lyme w/ Igenex after 3 regular lab tests that were -, but there you have it. I have a vague remembrance of a rash at 18 months. DS is almost 5 now, but PANDAS symptoms started (in retrospect and very minor) at around 18 months when we moved to the SE. That being said, he had classic Strep:PANDAS many, many times prior to T&A last Aug. He also has Myco. Tested - last Sept. when he has his acute episode that landed is seeking help from PANDAS specialist, but then he had pneumonia last Oct. and his Myco IGG has been elevated since.

My almost 5 year old son has been tested x 3 through the Ped and CHOP, both using std. W. Blot and typical large labs (like Quest). Most recently, we droppped the big bucks for Igenex and he tested + for Lyme and Bartonella. His PANDAS specialist, Dr. Bouboulis in CT. states that Igenex tests many more genobands than the std. Lyme test. I have done some research on the Net and most reliable articles state that the std. W. Blot is extremely faulty and has a 50% false neg. rate. Wow. Things I wish I knew a year ago that are now just being addressed.

Well, yes, the Myco came up both times for Quest, but was - for Lyme 2 times. Igenex found the Lyme (igm) and Bartonella (igg). Again, it seems like an awful lot of infectious exposure for a 5 year old, only about 3 years of which we have been living on the E. Coast and in the South. Our cat scratched my son a lot when he was younger, and our cat was a shelter adoptee, about age 5 when adopted, so perhaps the Bartonella came from him. I investigated getting him tested but when the vet referred me to NC State animal disease prevention, I stopped because I was afraid they would make us euthanize him if they found Bartinella (he poses no danger as he is an indoors cat and if he infected our son, he likely won't reinfect). The Lyme had to have been over the last 3 years because we were in CO prior to NC and my son was so little we never went out to parks and stuff - he wasn't even walking until a few months before we left Denver. I am rambling, seemingly, just finding it difficult to believe all of these results. Is it possible to get a false + for Lyme when done thru such specialty labs as Igenex?

Thank you. I greatly appreciate it!

yes, I would appreciate that. He is doing very well on the aggressive abx protocol that Dr. Bouboulis has him on, but I would like to know there are other options that can truly wipe it out prior to going to IVig. PEX is very risky for him as he does not have an appropriately sized exit vein and would have to have a port, apparently for quite some time. Thank you for your help!

Thank you. The myco Pneumonia occurred last Oct., I had to take him into the Ped and he was dx with walking pneumonia. The igg measurement was not taken until 5/24/11 (1.28) and the most recent was 7/27/11 (1.25). Still pretty high for a known past infection af 10 months ago. That was thru Quest. Now we have Igenex showing Lyme, igm and Bartonella, igg (don't have those labs in hand yet so don't know the measurements). I know I have read about multiple co-infections on this Site, but I am trying to wrap my head around a kid who has only been on this earth for 5 years contracting all of this on top of Strep:PANDAS. Are there any theories out there that suggest that PANDAS kids are more susceptible to to these other illnesses? He is on Augmentin 2 x D and Azith 1 x D (for 28 days now) and will continue. It seems as if Azith is the frontline tx for Myco, Bartonella and Lyme in a little kiddo. He is doing extremely well right now - even better than I have seen him for over a year - looks, behaves and reports feeling completely healthy and normal. However, we all know how quickly things can change with this illness. We would consider PEX or IVig in the future, but we are trying to get to recovery without it if possible. Is there anything else that I can do to help in wiping all of this out? Thank you!

Can someone explain which is the "old" and which is the "current" infection? Can you tell me if there is a measurement to see how old (for instance, a Lyme or a Myco) infection may be? If it is old, will it, in theory, slowly subside with use of abx? Why does an old infection that is not active, be the cause of autoimmune triggers, or are they independent of one another and the antibodies are just geared up from the past infection to go haywire? How is it that there is even a likelihood of someone being infected by multiple diseases (Strep:PANDAS, Lyme, Bartonella, Myco) all in the same body in a couple of years time? Does it seem strange that a kiddo could have been exposed and contracted so many? I ask these questions due Igenex results that we just received yesterday showing all of these things.

So, IVig does not help Lyme?

I think it is appropriate to request that a family member or anyone else refrain from sharing anything at any time. Given our kiddo's diagnosis, I would expect for people to understand. Even if they did not have PANDAS, who wants their kid exposed to potential illnesses? I also tought my son not to share food/drink prior to the PANDAS diagnosis. Even if someone is not a "carrier", they could be coming down with something but be in the incubation stage of it and inadvertently pass it along. In addition, I know of reports from parents who say that just being in the same room with someone who is a carrier of Strep can cause their PANDAS diagnosed kiddo to have a flare-up! I know from personal experience that it can be almost harder to manage this type of thing with family members than with friends or even strangers. Maybe if you set aside some time to meet with her alone and have a quiet talk - you could explain your fears and perhaps she might understand?

Ooops, re read the post - was up half the night with DS. Saw the bottom line - looks like he was exposed to Strep more than once, perhaps. With the low grade fever (my son didn't necessarily present with anything other than a low grade fever when he was Strep+) I would go for hat Strep test! Good luck an take care!

Prior to his tonsillectomy, I would bring my son in for rapid Strep tests not d/t Strep symptoms as much as the resurgence of PANDAS symptoms (and he was always +). It might not be a bad idea to take him in for one, especially since this mom or someone in that family may be a carrier. Also, whenever my son swims, I notice PANDAS symptoms the next day. It has happened multiple times over the last month, but it usually calms down after a day or 2. These have been chlorinated pools, but saltwater pools, I have heard, also use some level of chlorine. That's all that I've got in the way of my own experiences that may be helpful. If he swam just one time, I would think that if that was the culprit, his symptoms would have disappated by now....

PANDAS16: I wish you excellent health and great peace.

I am disturbed by this - There are many parents who do not have the tools to continue to go from door to door as you apparently have been able to. Also, it takes an incredible amount of money to manage long trips, hotels, hospital/Dr/pharmaceutical costs (not to mention IVig or PEX). Many people do not have the luxury of receiving parental assistance, especially when they are parents themselves, perhaps to more than one child who is ill. Some are more blessed than others in having some extra help. Some are alone in their quest for assistance. I do not think that there is a parent alive on this forum that would ever be "the type to give up" when it comes to trying to save his/her child.