P_Mom

Ok...maybe I am not following correctly....so, IVIG can result in a false positive Lyme test??? From reading up on the vaccine......it is not reliable/very useful, and would not cover all bands/reactions? I am gettiing confused, and more skeptical/curious on this Lyme thing. I did pull a tickk off my younger son when he was 3......but, nothing from my older son. I do have some "issues".....fatigue, insomnia, costocondritis, muscle pain, anxiety.....and, about 15 years ago , when we basically lived in the woods of PA.....I got bit by something on my butt. I thought it was a spider bit,(still might have been) but, I distinctly remember the huge red circle that formed around the bite. It was blistery in the middle, and I remember not feeling well, then, yes, I did this... I took a knife and sliced the center and drained it a bit ........it went away... and I was fine since then until after I had my first son about 5 years later?????? Both boys only test for band 41....my younger son 41 IGM and IGG, my older son 41 IGG. This is the kicker....two years ago, I had a huge vamp in crazy symptoms (but, I also had a ton of bad stuff going on and a pretty serious, sudden loss in my immediate family)....I thought the vamp was due to stress/anxiety (still could have been) WEll, I got so bad I couldn't get out of bed, barely. They tested me for Lyme and I came back positive on Elisa...very positive. They then ran a western blot and I came positive to all 3 bands on IGM but nothing on IGG. It was considered a positive result even by CDC...BUT.....although some docs thought it was Lyme (I did se a certified Lyme Literate Doc)...many did not. And, because I was sick for about 4 months before tested, and, only showed IGM response...they figured it was some other autoimmune thing/illness going on (because by then I should of had an IGG response...strictly IGM positives can be false if tested late).... they were particularly thinking EBV because they tested for that too and my antibodies were sky high and, EBV is one of the things indicated in a false positive IGM western blot. I think EBV doesn't get the credit it deserves...they are linking it to chronic fatigue, etc) So, (my antibodies to EBV are always kinda high, have been for years....hence, fatigue?)....but, the stressors of my life were said to weaken my immune system and let the EBV run ramped. So, Lyme was really pushed to the side. (however, out of fear, I did let the LLMD treat me for over a year) Long story........I never really believed it was Lyme...still skeptical...but now this stuff with the kids...UGH!!!!!!!!!

Thanks for the update SF Mom. Good info. I am interested in this. I know you asked if you could get Lyme or not with IVIG, and, thankfully, no...but, did you ask him if you can get the antibodies to Lyme from IVIG? So curious. Thanks!!!! Did you get a feeling from him or not that band 41 in and of itself is significanT???

Actually 250 mg of Aug. has the same c. acid as the 500mg....so, yes, 250 mg Amox. plus 250 Aug. equals one 500 mg Aug. pill. But, 2 250 mg Aug. pills DOES not equal one 500 mg Aug. pill....too much c.acid! So, no Jag...you are not screwy...or, amybe we both are!

475! THANKS!

No problem, Sheila!! I was going to request post removal regarding Dr. Cunningham's research from this forum, anyway....too much chaos....sorry about that! I have decided to just stick with my Pepsi Page for now. There is no need to address it any further......I give no resistance and will use other avenues. Thanks! Sincerely, Kelly Smith

This is awesome. No doubt....absolutely correct. I especially like this part..... "It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess."

Thanks, SF Mom.....keep us updated.

Jill...yikes. If it were me, I would up the antibiotic, just to be sure. Hey, we are leaving for Disney next Tuesday!! When will you be there ?

Hi Faith! Hey, I do know that many have posted that their PANDAS kids (not saying that is what your son has), but, many PANDAS kids have had bad reactions to probiotics. I even posted about it with my kids a LONG time ago. Don't know if they are reacting to the "bacteria" in it or what?? I did ask when in OK what to look for if a child has yeast problems. I was told to look for typical yeast problems...that it would show up in thrush, or itchiness "like a woman." They didn't mention an increase of PANDAS symptoms, though. DOESN'T MEAN IT COULDN'T HAPPEN......I am just sayin' what they said. As far as the Lyme thing......I am and have been very skeptical on all these kids testing positive for Lyme. Couldn't it be the mystery of PANDAS and the antibodies involved that are creating these positives??? Are the Lyme treatments successful because they consist of antibiotics and antibiotics treat PANDAS??? Dunno BUT...what has struck me lately is I keep flashing to Buster's map (was it Buster??)..anyway, where people pin-pointed where they were from......the NE is packed.........same place where Lyme is prevelant......hummmmmmmm?????? But, on the other hand..there was to have been a nasty strain of strep in the NE. Also, a Azith resistant strain. My boys did go from 0 to 10 after confirmed strep (which PenVK AND Azith failed to eradicate....Keflex did the trick.) So, I still lean to strep being the culprit, not Lyme (for my boys!) Okay, more Lyme stuff going through my mind! (I never had a doubt my boys got their genetic disposition from me.) Anyway.. SFMom....I know you are pursing Lyme and not sure you are dealing with it. May I ask a few questions? I am not in any way trying to "dispute" you, I just had some thoughts. Okay, so, we all know that several kids got sick from a playdate. Now, how does Lyme factor into that?? Wouldn't it seem more feasible that it was an infectious agent....meaning something contagious?? I mean, wouldn't it be impossible for all the kids to have Lyme and present with symptoms at the same time?? Even if it were underlying Lyme from birth.....still, for all the kids to have it? I am not even sure if that is what you are implying...but, this is just what I am thinking. And, the child who had his high strep titers resolve after IVIG........since we know that strep titers (ASO and AntiDNAase are NOT diagnostic of strep...is this really significant??? Again...not trying to dispute or discourage you...by all means...if your child is not getting well..I agree...check into all avenues. Just seems, to me, to be something infectious/contagious/certain strain since several kids got sick at once. And, Cr. Cunningham stated that PANDAS is a lesser version of Sydenham's chorea, but, caused by different antibodies and lasting longer...( I know.... the "lesser" part is hard to swallow for those severly affected)....but, we already know that strep has the molecular mimicry quality to it, resulting in RF and Sydenham's chorea (ocd and movements, attacking the heart in severe cases) ...so, doesn't it make sense that strep would also have the molecular mimicry quality to it for the brain?? Resulting in the lesser, recently recognized PANDAS syndrome?? Which, I believe, and, agreed on by Dr. Cunningham, has existed forever (tics, ocd, anorexia, bi-polar, etc)..but, just now getting the proper recognition, diagnosis, treatment??? I know one of the neurologists I saw said they only found out about strep damaging the heart from autopsies.....I wonder if anyone has autopsied the brain from someone who had TS, tics,ocd to look for strep?? Just some thoughts! kelly

Just curious...this may be way off track, but, can IVIG give you antibodies to Lyme and its co-infections??? Then, after IVIG, a child could test positive for these infections, without really having them, because the IVIG gave them the antibodies? And, Lyme testing checks for antibodies to the infections? Anyone follow me??

Thanks, Vickie! My whole family has never gotten flu shots our entire lives...and we are still here! I don't even recall anyone ever getting the flu!! ( Well,I think I did 6 years ago or so) We most definitely won't be starting now.

Nancy......

I am not sure that she meant that ALL stressful events open the BBB. I sure hope I am interpreting it all correctly.

Okay, thought of something else. She told me that what is basically happening in PANDAS (which we basically already know) is that illness/infection is opening the blood brain barrier and allowing the offending antibodies to do their dirty work. She also stated that stress can open the blood brain barrier allowing the same thing to happen. That is why our kids flair when under stress, are nervous or excited.....opens blood brain barrier.

Just so everyone knows....regarding IVIG. Dr. C really did not say much about it. I tried to get her to tell me if I should do IVIG for my boys, you all probably know how I have been going back and forth on it.....she would only say that it was up to me! She wouldn't say no, and, she wouldn't say yes. And, she never said that it did not work. She felt IVIG was warranted in the more severe/chronic cases. She stated she was conservative in her approach...and to try antibiotics first, then steroids. If you can manage your child with these, then great, why take the risks of IVIG if not needed. If you can't bring your child out of the episode and/or things are bad, then, more aggresive measures need to be done. (IVIG/PEX) All the PANDAS docs respect one another.......Dr. C, Latimer, and Dr. T are just more conservative when it comes to IVIG....Dr.K is not....and that is okay....it is up to the parent to decide what to do based on how they feel their child is managing. But, Dr. C would also not put IVIG and cure together at this point. We just don't know yet. So, the IVIG questions remain. Also, I know some discussion has been made in regard to impetigo and PANDAS. Some have said impetigo can't cause a PANDAS flair because it does not raise ASO. Well, I am going to be bold and say that particular belief is definitely false. She showed me a slide of the "faces" of strep.....strep throat, impetigo, cellulitis, etc. I piped in and said my PANDAS child had a definite flair with impetigo last year....she smiled and said "of course."

PhillyPA....no, she did not mention a time frame to become chronic....I don't think there is one, and, it doesn't always happen. I think, regarding your situation, there is every reason to be hopeful and expect recovery for your child.

IowaDawn...Money is not flowing into OU at this time. She still has yet to apply for the grant in November. (for the IVIG study) WornoutMom....She didn't mention much of anything else regarding Lyme...no mention of it in relation to the other titers. When you said you had normal anti's......what were the numbers. Some of the normals aren't so normal. My younger son had Cam K of 162 with "normal" ANA's....but, after speaking with her...his "normals" weren't so normal. Lynn....the reporter apologized over and over for making me cry...but, he said he did it for a reason...just like you said....he said emotion gets the attention. I don't know if they will show any of the clip of me crying....but, we shall see.....it is extremely difficult to talk between tears. Also, he has a child with austitic qualities...possibly leaning toward Aspergers...so, he was very interested in our story. Oh how things work out......

Hi Everyone! I am back safely! I had a wonderful trip. I can't tell you how grateful I am to have been given the opportunity to visit Dr. Cunningham......it wouldn't have happened without all of you guys! THANKS! An extra THANK YOU to Vickie! Dr. Cunningham is so kind, generous, and caring. She is so grateful for what we parents have done. She and her staff are wonderful and very dedicated to their work...they really care. I felt so at ease with all of them...I can't really explain it, but, it just felt right, they are an awesome group. There is no doubt in my mind that we did a great thing for PANDAS by winning this grant. I also firmly believe that Dr. Cunningham and her staff are KEY to unlocking the PANDAS mystery. The work they do is amazing. They work VERY hard everyday......they are swamped and doing what they can every day. The PANDAS samples are rolling in more and more each day. Last Friday they had 17 samples arrive. It takes about two days to run one sample, then, many calculations need to be made. They have one person running Cam Kinase, Kathy Alvarez, and Adita runs the ANA titers. They are both long processes. They could sure use more help. If you sent samples in and are waiting for results, please be patient.....they are doing everything they can and will get the results to you....it may be a wait, just, again, be patient. There is so much I could say, but, in a nutshell, there are no definitive answers.... YET! I believe there will be answers soon. One of the biggest things Dr. Cunningham is doing with the funds is hiring a research immunologist from Canada who is going to join the staff to study PANDAS. He has already been interviewed and has accepted the position...this is possible because of our funding!!! Dr. Cunningham is substantially funded to study the heart, but, not PANDAS, so, she has to dedicate much of her time to heart study. Hiring this immunologist will be a great help in the PANDAS research. Funds will also be used to purchase supplies. This is what we need....an immunologist to unlock the PANDAS mystery. I can answer some of the questions we have all asked. (many of which we already knew) 1. Strep titers are in NO way diagnostic of PANDAS. Dr. Cunningham says she "took care of that" at the OC conference. For a PANDAS diagnosis (meaning in relation to strep)... a positive culture OR high strep titers are needed for the diagnosis...however, the child may be tested to late to show either, or, may not mount enough of a response to show strep at all. It really is complicated. 2. Just because strep is not cultured from the throat does not mean that the strep is not elsewhere. Could be in the gut, sinuses....it could be vaginal or perianal. So, negative throat culture does not mean no strep. 3. Strep is not the only cause of the neuropsychiatric symptoms. Many other viruses/bacterias can result in the same type of syndrome...but, it is still the same type of autoimmune dysfunction/problem. You won't find strep anywhere in this case.....this would be the PITANDS syndrome. This can also produce high Cam Kinase.....particularly Lyme...it produces high Cam K results. In a viral cause of symptoms, antibiotics will not help...but, steriods can be given to bring the episode under control if the episode is bad enough. Strep induced (bacteria induced) episodes should resolve/diminish with antibiotics. 4. If a child is not treated, over time it is possible that the brain can get so used to the new way of functioning that the problem becomes chronic as the brain retrains itself to the new way of dysfunctional functioning. In this case, it seems no virus or bacteria need be present. But, it is still the result of PITANDS/PANDAS syndrome. 5. IVIG can't be considered a cure. There have been no studies long term on these kids to proclaim cure, and, the data does not support it. IVIG can be extremely helpful, but, we can't say cure as of yet. A study will soon take place where higher doses of IVIG are going to be tried. Dr. Cunningham will get samples of the childs blood before and after this new IVIG study to see what changes take place. She feels IVIG should be reserved for the more extreme cases....the milder ones can be managed with antibiotics and steroids. It seems the IVIG temporarily dilutes the problematic antibodies.....we don't know yet if it "reboots" the immune system, we just don't know. Same goes for PEX...extremely helpful in severe case...but, can't say cure yet. 6. If your child is doing well and being managed with antibiotics and/or steroids, it is quite possible that over time, the immune system will "right itself" as they get older. This is the hope. This is what she stated regarding my boys. She did say that I would have to deal with it most likely until they were around 20. 7.They are currently focusing on the D1 and D2 receptors. They are NOT certain as of yet, but, high Lysos seem to be correlated with tics,and,sometimes once they get high, they can stay there for quite a while.....the Anti-D1 and D2 seem correlated more so with OCD and behaviors. Again, this is NOT for certain yet. They are working on it. If your child has "normal" lysos at 320, it really is double the normal mean and most likely there will be problems. However, "normal" children can have an anti-lyso number of 320. 8. She will soon be attending a conference on Lyme. However, if your child has PANDAS, it DOES NOT mean he/she has Lyme or that Lyme caused the problems. But, some children do/can have both conditions. 9. The NBC shoot. Well, like I thought, I really had no say on how is was run or what I could choose to say. It was all run by Pepsi and the camera man had a sheet of set questions he was to ask. I had zero prep on the questions. He just turned the camera on and started asking questions while filming. The questions related to the Pepsi Project...why I started it...the impact we wanted, etc. I did my best. All the staff and the camera man say I did really well. I hope so. The camera man asked me to go back to the feelings I had when this all started and to try to explain how I felt. I started crying...just going back there. He filmed about 10-15 minutes of me answering questions, but, it will be a 30 second clip. He also filmed the staff working and some footage of Dr. C speaking with me. Again, it will be a 30 second clip and will only include what Pepsi wants it to include. I have no idea on air time, etc. I will keep you informed on that. I could only show up for 3 seconds or so...he said the clip will be quick. I am sure they will pick the strongest points. If the footage is good, it can really make an impact. I am hopeful. 10. They are looking at the drug Haloperidol at being a possible effective treatment for PANDAS. This is also part of the research with the grant money. Seems Haloperidol can block D1 and D2 receptors, effectively diminishing PANDAS symptoms. However, if given in the wrong doseage, given for too long, or if the body can't clear it effectively, it can have the opposite effect, making things worse. They have shown this reaction in mice. I am sure I am missing several points. I will post as they come to me. Bottom line, again, we just really don't know the PANDAS answers yet....but we are getting there. More research is needed. The 50K will help, but, it is not enough!! She needs more staff...more money to study PANDAS. I want to raise more money for her....I truely believe, from what I saw, heard, and experienced, she and her staff can unlock the mystery. I am thinking of collecting donations. I already have $200 donated, sent to me, but, set aside for her. I don't know if you guys would trust me enough to send donations to me, and, over a 6 month period or so, I would collect them, put them in a special PANDAS fund in the bank, and then present her with the additional funding in one lump check. I believe lump sums are bettter than donations rolling in haphazardly. There are 1200 plus members of the fan page....if we all donated what we could...no set amount...we could raise a subatantial amount of money. They need it...they need help and more funds. I don't want to see this research fizzle out because of lack of funding. What do you all say??? Oh, I will be posting pictures on the Pepsi Refresh Project PANDAS page.

Thanks everyone! Hey, as far as the t.v. thing goes.....I really don't know all the details regarding the shoot. NBC/Pepsi may edit, pick and choose which projects to air, etc. I don't think it guarantees a television appearance.........I am hoping so, for PANDAS and Dr. C's sake, but, I, myself, would like to aviod the whole t.v. appearance thing if at all possible , but, I will do whatever is necessary to help this project and our kids! I wish Vickie were going with me!

Hello Everyone!! I am excited to update everyone on what has been happening regarding Pepsi Refresh Project PANDAS. As you all know, we were officially announced "Grant Recipients"...... Because I was the one who submitted the application, the funds had to be sent to me. I tried to get the grant money sent directly to Dr. Cunningham, but, Pepsi would not allow it. But, turns out to be a good thing! This Monday, at 6 am, I will be boarding a plane to go visit Madeleine and her staff in Oklahoma and hand her her funds! Monday evening, I will get to meet Dr. Cunningham and have dinner, then, Tuesday I will be visiting her lab, meeting all her staff, and will get a tour of the lab and updated on all that is and will be going on regarding PANDAS research! I will fly back Tuesday evening. I am so very excited, overwhelmed, humbled, etc. A producer from NBC, who is covering many of the Pepsi Projects, has also contacted me and they are trying to make arrangements to be in Oklahoma on Tuesday to cover the funds exchange and to interview Dr. Cunningham and I. This is still in the makings, so, it is not 100% happening. Let's hope so...the more PANDAS exposure, the better. I will be asking LOTS of questions and taking lots of pictures to share. I really don't know what else to say except THANK YOU to all for making this happen...making the research happen for our kids...and all the future generations! I will do my very best to obtain as much info. as I can while I am with Dr. Cunningham, and, will do my very best to represent the wide, complex, PANDAS/PITANDS spectrum. I don't know what else to say! I can't wait to update everyone after my trip! THANK YOU ALL!!!!!!!! Kelly p.s. I don't really like to fly....prayers are welcome! As I hit "post topic"...my phone rang. (totally serious!) It was NBC, and, they have a crew in Dallas ready to go up to Oklahoma on Tuesday! WOW! This is all falling into place. GOD is GOOD! We will get this done for our kids!!!!!

I'm thinking they are twisting grey and making it black and white!

Okay.....lol...DO NOT SEND THE WHOLE ESSAY! Keep it as simple as you can....trust me!!

THANK YOU, ALL!!!! There is so much more to come!!!!!! Off to Oklahoma I go!! I will keep you all informed!!!!! Promise!

They work....we get Ultra Strep by Osom. Got a positive result on my hubby when younger son suddenly started to flair big time...hubby only had a headache...decided to swab because of sons increase....positive. They are the same rapids they use at the docs office. My husband went straight to the hospital (this was at night) for antibiotics. They did not even swab him because he told them he got a positive on a home test...they just gave him antibiotics. Within one day of hubby on antibiotics, and increased Aug. for son, the increase in PANDAS symptoms stopped as quickly as it started. I will never go without them in the house. It is so easy to just swab here at home when someone has a sore throat, and, I do have confidence in the result. 3 years and they have never been wrong.....I have swabbed dozens and dozens of times.....only got one positive...only one strep...the rest were viral.

forjpj....NO itis NOT a pipe dream.....that is what I initially thought about the Pepsi Project....I thought winning the grant was a "pipe dream" and I almost did not do it. GO FOR IT!!!!!!! I will be behind you....as I am sure all of us will!!!!