P_Mom

HI...you may want to post this question on the Lyme forum. They will be of much better help to you.

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Any time I post, it comes back as "nasty". I don't see anything "nasty" in my posts. The only ones who think I am being "nasty" are those dealing with Lyme. I am not on the Lyme forum...I am on the PANDAS forum posting about PANDAS and at times, how it relates to Lyme. You know...I held off for a month about posting about how well my kids are doing because I didn't want people to see it as ""hey, my kids are doign so well..." Perhaps my hesitations were right? How sad is that? But, then I decided I should continue to present all side of the picture and give people hope. I will probably go back into hibernation after today...sorry if the Lyme folks think I am "nasty"........not suprised at all. Hibernation sounds good.....I'll awaken someday....Merry Christmas!

Not sure if that were meant for myself or WD..but...we have done the PCR/DNA testing. (negative) I usually don't post about my or my sons test results because I know they will be just refuted. I have NO DOUBT what is going on with myself or my sons. We have done ALL the testing possible...spent money we didn't have, etc. There Is NO LYME in this family. Is there ever a time Lyme doesn't exist???? I am starting to wonder. Several docs have told me....test extensively enough..you'll get the result you want. Test, test, test.......you'll get what you want...but, if it is negative..that is wrong too? Even the PCR is wrong if negative, according to recent posts. How do you ever test negative for Lyme, SF MOM?? Really curious here. You say it is diagnostic, but, if negative...it can be a false negative??? I am sure your LLMD would protest the info. posted...that is expected. I hesitated to post because of the " my LLMD's says this......" Who is to say what is right? I am just posting info. so other's can know it is not always Lyme. I have seen the DVD. I wish it were understood that I have looked EXTENSIVELY into all sides. Even being a "lyme" patient myself. What is the explanation, SF MOM, for someone like me who has done extensive antibiotic treatment for Lyme and still tests positive for Lyme (igm) NO IGG. You would think by now I would test IGG positive. It has been 2 plus years...I took enough antibiotics to go into "bone marrow supression"..but not enough to test positive for IGG LYme? I did not start to see improvement until I saw a Rheumatologist (per Dr. C) and was started on a treatment for inflammation (sternum) and Fibrimyalgia. Now, I feel Much better. 2 years of antibiotics didn't touch it.

Worried Dad, Sounds like great advice....regardless!

You are welcome! I decided I have to share what I have learned from her despite the critisism I/she may get. Just to clarify the last part of the post. She is responding to my question of why I continually test IGM positive (even via CDC standards) for Lyme. I have been round and round with it for years. Took major antibiotics for almost 2 years for "early Lyme." Even a picc line for IV Rocephin for a month. I still, to this day, test IGM positive for Lyme, and, after recently exhausting myself trying to figure out why by consulting with all kinds of docs (including LLMD's)...it has finally been determined that I will probably test positive for Lyme via IGM forever. They can't indentify why...they have tried. I had sooooo many tests. Lyme had been oficially ruled out for me. They now think (not only Cunningham) that I never had it in the first place. Could it be a PANDAS cross-reactive thing? Cross-reactive to who-knows-what! I still have absolutely no IGG response. My son is the same way......but, no Lyme for him. Just IGM positive...no IGG response. Interesting, huh? Everyone...there is such a thing as false positives...especially with IGM. It even states it on the tests. Please be very careful in determining Lyme in someone who has been ill for a while and only tests IGM positive.

The strep one is perfect...red like the devil!

IgM does not cross the placenta or the brain so IgG is the immunoglobulin that usually does all of the damage and is the one that indicates a previous infection. IgM can react with various organisms such as strep and lyme agent. I use Mandell, Douglas and Bennett's Principles and Practice or Infectious Diseases and it shows only IgM at the beginning stages of Lyme during erythema migrans and IgG for the arthritis. This is on page 370 of the seventh edition of this book. They state: " Acc to CDC criteria, an IgM Western blot is considered positive if two of the following three bands are present: 23, 39, and 41." "HOWEVER, A COMBINATION OF THE 23 AND 41 MAY STILL BE A FALSE POSITIVE." "AN IgG Western BLOT IS CONSIDERED POSITIVE if 5 of the following 10 bands are present: 18, 23, 28, 30, 39, 41, 45, 58, 66, and 93 Kilodaltons. "Approximately half of the normal population has IgG reactivity to the 41KDa antigen of the spirochete, and this reponse has no diagnostic significance." "After 4-8 weeks, patients with active infection have positive IgG antibody responses regardless of the strain causing the infection." ".....IgM responses may persist for years after treatment. Thus, even a positive IgM response cannot be interpreted as showing recent infection or reinfection unless the appropriate clinical picture is present....If patients with past or asymptomatic ifection have symptoms caused by another illness, the danger is that the symptoms may be attributed incorrectly to Lyme disease.....The most common mistake is to confuse chronic lyme disease with chronic fatigue syndrome or fibromyalgia." "In the mid 1980s, the transplacental transmission of Borrelia burgdorferi was reported in two infants whose mothers had Lyme disease during the first trimester of prenancy. Both infants died during the first week of life. Spirochetes were seen in various fetal tissues. However, in subsequetn prospective studies, no cases of congenital infection have been linked to the Lyme disease spirochete. Although it is still possible that B burgdorferi may cause an adverse fetal outcome in humans, it has not been documented conclusively." " A counter culture has emerged tht ascribes pain and fatigue symdromes to chronic Lyme disease when there is little or no evidence of B burgdorferi infection. In such patients, the use of prolonged potentially dangerous and expensive antibiotic treatment is not warranted. IgM is not a response to Lyme agent the IgG is the most important response. You probably never had Lyme. Your boys probably have something crossreacting with strep and Lyme. Did I send you the paper from some years back of crossreactions Lyme and strep. Probably strep and lyme together may cause more severe symptoms but I would be hesitant to say you have Lyme without any IgG. IgM is not diagnostic in most instances for diseases. IgM is there all the time. IgG is diagnostic and should be to at least 4-5 bands to be sure. From Madeleine Cunningham

Hi Fixit! Scenario number 1, and number 2. My children would wax and wane over the past 4 years. My younger son never reached 100%, but, their would be periods when my older son would reach 100%. But, they both would react/increase when exposed to anything. My older son would even get a very mild facial tic during allergy season. Didn't see it this year that I can recall. I can say, right now (that is important 'cause who knows what is around the bend)....but, right now they are both 100%. This has not happened in 4 years with my younger son. They both just had a URI with no increase, so that makes it really cool. I am not going to say the PANDAS is gone from them, but, things seemed to have stopped. (for now!) We are 6 months out from any kind a flair...that is a record. Not to mention we have gone 4 school months without any flair. As for scenario number 2....yes, PANDAS surfaced undeniably 4 years ago. Older son remitted 100% in 48 hrs. of Amox. Younger son remitted 80% after a month of PANDAS symptoms and 2 full courses of antibiotics. (amox. and Keflex) They have been on proph. antibiotics since the first flair in 2007 aqnd never had strep or a "bad" episode since. When they would increase, I would up their antibiotics. Older son generally remitted to 100%, but, it took longer than 48 hours. His longest flair was 2 weeks, but, then the flair would stop as quickly as it started. I continued with this...upping antibiotics for him when he would show with tics.....he would remit...stay on proph. antibiotcss..up when sick and flaring..he would remit, etc. Until this last year...no increase with illness so no upping antibiotics. My younger son always had some sort of symptoms present...never reaching 100% but fully functional. I did they same thing with him, but he was different in that he did not ever fully remit. Again, same with him..until this year. I think it may have been the t%A we just had for him in Nov. because the doc said they were infected. My older osn had t%A in Nov. 2008. Maybe that is why he would remit between episodes?? I am hoping that this is what Cunningham refers to when she says that over time....the immune system dysfunction responsible for PANDAS "rights itself" (many cases...not all) Hope this helps. Remember....it has been 4 years of PANDAS for us to reach this point (and 4 years of no strep) ..... I only pray it lasts. I am not about to let my quard down....that PANDAS beast is most likely lurking just below the surface. Let me know if you have any more questions.

Thanks everyone! I just wanted to mention that this trend is not unique to my situation. I know every child is different. But this course has been seen in many PANDAS children. When I first joined the forum in 2007, the "veteran posters" that were here then (who have since left), were posting the same results with their kids. Not all of them, but, many posted that their children slowly recovered over MANY (for us it has been 4) years until they hit the point when they would stop reacting to everything and start responding to illness "normally." These kids were kept on proph. antibiotics for years until this improvement was seen...and then for who knows how long after. I know several would just bump up their antibiotic whenever they saw a flair that was concerning enough. That is what I do....they stay on 250 Aug., but, when I saw a flair, they would get 500 mg 2 x a day for about 4-5 days or until things settled.(or a steroid burst if things were really concerning) This recent illness, no increase in antibiotic was required! Also, IVIG was basically unheard of when I began posting in 2007. My first post was about IVIG (from Dr. K's site) and I was wondering why people didn't pursue it. So, the kids that were being posted about 4 years ago...none of them had any treatments except antibiotics. (maybe some SSRI's in the mix before diagnosis) I believe they are all doing well today. Anyway...just wanted to clarify that this trend in my boys is not unique to me.

Hi everyone and Merry Christmas! Well, I thought I would pop on and share some good news. The whole house, including my two PANDAS boys....just got through a decent upper respiratory tract infection, and, for the first time in almost 4 years, neither of my boys had an increase in PANDAS symptoms...none. I am stunned, happy, hopeful, but, guardedly optimistic because I know the nature of this beast. We will still continue with their proph. antibiotic indefinitely. I could not believe when almost 4 weeks ago my younger, more severe PANDAS son woke up one morning with a sore throat and chest congestion, which proceeded to turn into a nasty cough. Normally, EVERY time he got exposed to anything..PANDAS symptoms would flair about 3 days before someone in the house presented with an illness (didn't even have to be him) Well, a few weeks ago he just woke up sick! Yipee! LOL No PANDAS warning. Then, my husband got it, I got it, then, my older son got it...again, no pre-warning tics from him either. I don't know what is going on. It seems so strange after almost 4 years of this to see them doing ..well, regular. I guess it indicates that healing is continuing and they are no longer reacting to everything. I still think they would react to strep. I just wanted to put this out there for everyone to give some positive news and hope. Someone recently posted one of the docs said that PANDAS is progressive. Well, in our case, it seems to be regressive. I wouldn't hang onto those words that your child will for sure just get worse slowly. My younger son was a severe onset with the WORKS.....homebound. My older son presented with sudden onset motor tics....but, none of the other stuff....except some ADHD behaviors. I have watched them both wax and wane over the years.....ever soooo slowly getting a bit better as time passed. I really didn't think we would see a day when they did not react to illness....atleast not until they were much older. My boys were diagnosed PANDAS in 2007 (caught early) at the ages of 4 and 7. They are now 8 and 11 and doing wonderfully...excelling in school...very social, etc. They never received any treatments except for antibiotics. They never did high dose antibiotics. Younger son did require 2 steroid bursts to control one flair due to Pertussis and one just due to a URI. So, healing is possible without more aggrressive treatments... (but, I would have definitely done IVIG, etc. if needed...still will if I have to ) We go see Dr. Latimer for a check-up January 20. I will post what she has to say. In the meantime, and for quite a while, I will keep them on their 250 mg Aug. a day (yes, that is all they take...not even supposed to be sufficient...but, it has worked for them for years), multi-vitamin, probiotic, and fish oil. Just for the record, no Lyme is involved with my boys, nor are any underlying infections involved. They both do have mild immune deficiencies that seems common in PANDAS kids, but, no doc is concerned because the "lows" are apparantly close enough to normal and they do not get sick often. We'll also keep monitoring that. Youger son scored 162 on Cunningham, and older son 112....both had normal antineuronal antibodies. Oh, my younger son had T&A in November.....tonsils appeared just fine before surgery, but, doc said they were "very infected" upon removal...perhaps that is the reason for the improvement. Neither has had strep since onset, which I attribute to their healing, and which I think is crucial in PANDAS recovery. That is why I will not pull them off their proph. antibiotic anytime soon. Well, that about covers it. I wanted to give an update to encourage everyone who is struggling.....and to give hope this Christmas. Your children can recover........4 years ago we thought we may have to institutionalize my younger son. You would never know it today! God Bless you all! I pray that every single child and family experiences healing...no matter what you are dealing with or how you go about treating. Merry Christmas! Kelly

Hah - somebody else PM'd me this same advice, which I thought was excellent. Great minds think alike, eh? I have in fact sent an e-mail question to Dr. C. She's been wonderful to our family over the years since we first sent our ds's blood sample to her for testing. With the Holidays coming up, I don't know when she'll get a chance to respond, but I'll share her feedback via follow-up post when she does. Thanks, P.Mom! Great! That is the best thing you could do right now...she'll get back to you, eventually! Personally, I would go with what she says. Not to be snooty, but, I met this woman...saw what she does, etc. She is the most brilliant person I ever met. She really researchers her stuff...works non-stop, and is very careful as to what she claims/reports. You asked if strep can be cross-reacting....YES!! Make sure you ask her about that as well. Hey, if you feel comfortable, pm me your personal e-mail. I can forward some tid-bits of info. Cunningham has sent to me about all this. Just a bit.... I also wanted to say that when I was filling out the Pepsi Refresh Grant acceptance forms, Dr. C had to fill out some sections regarding who she was, her qualifications, achievements, credentials, etc. The pages, yes, pages, of awards, research, published papers, education, etc. was absolutely staggering. My Dad saw the list too, and was speechless. I really do trust and totally respect her. I do wish you and yours the very best, Brian! Hope you find peace in the answers she gives you. Merry Christmas! Kelly

Brian, Hi! I don't post on here much anymore, but, your dilemma tugged at my heart. I know how much you and your family has gone through....I hate to see you potentially get led down the wrong road and/or lose the gains your son has made. Note: I said "potentially." My suggestion: Contact Dr. Cunningham with your sons IGENEX results and a bit of his/your families history. She is neutral, but, also a very informed researcher on Lyme who has presented at Lyme conferences, etc. She will tell you how she sees it without Lyme colored glasses on. I can assure you that most of the LLMD's out there will say your son has Lyme regardless of the fact that the the IGM cross-reacts with so many things and his IGG is negative after so many years (and the Doxy did nothing initially) I could go on about how your sons results, to me, indicate that Lyme is not a factor here, but, I will just be refuted. (hence the reason I don't post much anymore) Please contact Dr. Cunningham...she can explain some things to you and hopefully ease your concerns...and perhaps spare yourself unneeded worry and money..... not to forget to mention the worst(as you mentioned)....removing your son from his needed med to something that will potentially have him lose ground and/or unnecessarily over medicate with unneeded high doses of rotating antibiotics. Oh..your thread asked how to determine "indeterminate" results. Just send IGENEX more money so they can confirm if the popular band 31 IGM (very common) is really positive or not...which...why don't they do that in the first place with the big bucks you already send them???

I have suspected food intolerances (IGG mediated) in myself. Does anyone know if the high total IGG could be the result of a food intolerance IGG response?? Thanks...sorry this is about myself...but, you guys would know the most about this stuff!

I had some blood work done. My rheumatologist wanted to run some tests. He ran quantative immunoglobulins to chek for suspected immune deficiency. I suspected it, too, becaue my kids run low IGG and rock bottom normal IGA. Well, I just opened my results. My total IGG is high. 1901 normal 654-1600 IGA 300 something ... higher end of normal IGM 90 something...normal Does anyone have any insight on why someone would have an elevated IGG? So weird. Or, is it nothing to worry about. Thanks!

Well said, Vickie! We don't need anymore blanket, dismissive statements about PANDAS that can hinder the research/acceptance progress even more. We know what we know...lived what we lived... we saw what we saw. My boys are also two kids who have PANDAS and No lyme (yes..for the record..we did even more extensive testing and evaluating), nor do they have any kind of co-infection. Sf mom...."Unfortunately, enough is not yet known about PANDAS and everyone needs to remember it is not well studied." EXACTLY! Cunningham is also a strep expert...has researched it for years. Grows it in her lab...injects it into mice...etc. She believes 100% in the auto-immune dysfunction of PANDAS cause by strep. So, maybe your doctor is wrong?? Maybe Cunningham is wrong? Again...can we stay away from absolutes?

Yes! Stuttering was the first symptom of something amiss in my older son. He suddenly started to stutter after his K-shots. We had no idea what was happening. It resolved on its own after about 2 or 3 months. This was 2 years before PANDAS hit the fan....we now know it was the first sign of PANDAS, but, unfortunately we missed it......so, something was brewing already from a previous strep infection he had. The stuttering would always come back occasionally for a couple of years when he was ill or exposed........stuttering and a neck tic are his two main symptoms. I haven't heard any stuttering in about a year now ....

CobbieMommy....... It may be as simple as this....Doxy has good anti-inflammatory qualities. If your son has congestion from allergies, etc....the Doxy may simply be reducing the swelling in the upper respiratory system and allowing the sinuses/nose to drain. Then, the excess mucus/post nasal drip is causing him to clear his throat. It MAY have nothing to do with herxing....

I have a question for those who believe that their children's "PANDAS" was caused by Lyme....that it is the result of a chronic infection and not immune dysfunction....which in turn lead to the misdiagnosis of an autoimmune disorder and not chronic infection. The PANDAS/Lyme thing has a lot of people confused.....is Lyme at the root of PANDAS? Does my kid really have Lyme (not PANDAS) and Lyme caused their immune dysfunction? I was thinking about this the other day.....perhaps someone can shed some light on it, or, perhaps this can shed some light for some people. I KNOW there are real cases of Lyme here..I am not refuting Lyme...just for those with clear cut PANDAS cases...think about this..... Take into account Cunningham's mouse study: "Using a mouse model of PANDAS, Mady Hornig, MD associate professor of epidemiology at Columbia University Mailman School of Public Health, and colleagues(Cunningham) demonstrate this suspected link between GABHS antibodies and the psychiatric symptoms of the disorder. Immunizing mice with an inactivated form of the bacteria, CII researchers found that the mice exhibited repetitive behaviors reminiscent of children with PANDAS. Injection of antibodies from the immunized mice into the bloodstream of non-immunized mice replicated these behaviors. “These findings illustrate that antibodies alone are sufficient to trigger this behavioral syndrome,” said Dr. Hornig.

I have a question for those who believe that their children's "PANDAS" was caused by Lyme....that it is the result of a chronic infection and not immune dysfunction....which in turn lead to the misdiagnosis of an autoimmune disorder and not chronic infection. The PANDAS/Lyme thing has a lot of people confused.....is Lyme at the root of PANDAS? Does my kid really have Lyme (not PANDAS) and Lyme caused their immune dysfunction? I was thinking about this the other day.....perhaps someone can shed some light on it, or, perhaps this can shed some light for some people. I KNOW there are real cases of Lyme here..I am not refuting Lyme...just for those with clear cut PANDAS cases...think about this..... Take into account Cunningham's mouse study: "Using a mouse model of PANDAS, Mady Hornig, MD associate professor of epidemiology at Columbia University Mailman School of Public Health, and colleagues(Cunningham) demonstrate this suspected link between GABHS antibodies and the psychiatric symptoms of the disorder. Immunizing mice with an inactivated form of the bacteria, CII researchers found that the mice exhibited repetitive behaviors reminiscent of children with PANDAS. Injection of antibodies from the immunized mice into the bloodstream of non-immunized mice replicated these behaviors. These findings illustrate that antibodies alone are sufficient to trigger this behavioral syndrome, said Dr. Hornig.

While with your PANDAS son, you run into an old high school friend while out shopping. He is there with his daughter. You greet him with a big hug, introduce the kids, then he promptly tells you he is there picking up a script for his daughter who just came back from the doc and diagnosed with strep. Dread must have come over your face and you must have turned white as a ghost, because without you saying a word...just standing there frozen...he pulls his daughter close to him...puts a hand gently on her mouth, and just kind of looks at you. You hurriedly depart from him and his daughter.........then, you find a corner in the store, pull out your hand sanitizer.....then proceed to apply it to your neck, side of face, arms, clothes...anywhere that touched him when you hugged him! LOL

Hey...GREAT idea. Let's all send them a Christmas card....let them know we are supporting them and are grateful for them. A card in and of itself is great.....a donation of ANY amount would be wonderful! Let's keep it going! Oh....you will receive a tax deductible receipt with your donation.

"..........I hired a new doctor from Calvary who is an immunologist and has begun in my lab as of Nov 1. He is investigating PANDAS and autoantibodies and signaling. We are very grateful for the funding. I could have not recruited him to my lab without the funds."- Dr. Cunningham Whoo-hooo....I know they are going to find something out about this....I just know it!~ An immunologist researching PANDAS exclusively.........AWESOME!! Way to go guys!!!

I am going to say no.....you already have one elevated titer........more than many of us have.

I was thinking the same thing about IVIG impacting results. Seems like it is a possibility...given no physical or PANDAS symptoms. Your daughters numbers are very similiar to my sons...and I was told the same thing....not to worry about them. The IGG is just indicating a past infection...the IGM is recent, but, those are still negative...right? (although close... like my sons)???