momofgirls

Hope I have this right in my thinking but I believe the cam k is elevated due to auto-antibodies attacking the brain. Those auto antibodies are not strep antibodies just like they are not lyme antibodies. Right? I think you can have negative strep titers and negative lyme titers and still have auto antibodies producing a high cam k. Basically the Cunningham test just tell us something is wrong and we need to be the detective and figure with what our kids are infected. It doesn't really mean its lyme not pandas just that lyme is one of the microbes triggering symptoms. Lyme patients react to strep and viruses just like "pandas" kids do. Its really all the same to me. We all know that pandas cannot be diagnosed based on strep titers. Some kids just don't have a strong response to the tests for various reasons. I am sure it is the same in lyme testing. Wendy, that PCR DNA test is suppose to clear confirmation so I am so sorry your son has lyme but am very optimistic that he will beat this. Thanks for sharing. Kimquote name='ajcire' timestamp='1285805162' post='86380'] Glad to hear you have found your answers! I have been trying to follow all this but its all so very confusing. I have a few questions that I hope make sense. 1) Does this mean your son (or any of your kids) does not have pandas and it is all lyme? 2) What is DNA testing for lyme? Why doesn't everyone just go to that if it's what gives more clear answers? 3) How did the dr. discover leaky gut or is it assumed based on symptoms? Meaning is there some sort of test for this? This one might be confusing.. I'm hoping it makes sense when I actually try to put the question in words. I think you said your child does not make antibodies because he got it utero but if that is the case than what is the camk measuring?

Hi Suzan I understand your feeling of uncertainty regarding your daughter's negative western blot. It may very well be that she does not have lyme but there can be false negatives for various reasons. One reason may be low antibody response as you mentioned but another reason can be elevated immune complexes (C3D). If she has an elevated C3D then it is possible that her antibodies are bound within the complexes creating a false negative. This is common in lyme patients, so I've heard. Have you run this test? I think you are smart to see a lyme doctor just to make sure you have completely ruled out lyme because your daughter's imdeterminate bands are lyme specific. No one can say for sure but its definately worth investigating. Good luck! Kim

Thanks for clarifying Cobbiemommy. I don't know that it is that certain bands are more treatable. I think it goes back to the idea that if that band is showing up then you definitely have lyme and that % is a percentage of his patients that improved based on those bands showing up in their bloodwork. Note, that all the numbers are 90 or above, meaning there is almost always a favorable response to antibiotics if you have lyme. I do know that band 31 is unique to Borreliosis (Lyme) and that antibiotics should bring a very favorable response. Our doc has 22 years of experience and trained under Dr. Ed Masters. He is very no nonsense and takes a long term view to treatment.

Cobbiemommy, I did not know that patients positive for certain bands are "more" treatable with antibiotics. Now I am nervous...my daughter was positive for 31 and 41 and IND for 34, 39, and 83-93. Any insights on what those bands mean? Just so I understand, your doctor speculates how a patient will respond to antibiotics depending on which bands are present? Break it down for us a little further please. Thanks, Kim

Thanks for the response lyme mom. I put a call into Dr J's office and will see what he says. Can I ask how long did it take for things to settle for your son after starting the tindamax?

Some of these ticks are the size of a poppy seed and can be easily missed especially if attached in the scalp.

Maybe some of you experienced lyme people can tell me how long it takes to see a baseline adjustment with lyme. Dr J added bactrim to my daughter's zyth back in June. We added Tindamax weekends only a month ago. With the bactrim she herxed a lot and it took a couple of months for things to calm but not really better than where she was prior to starting it. We had a few super days but they didn't last. Now she has had the tindamax for a month and again I felt I saw a building of herx after two weekends of on it. Once again things have settled but back to where we were before we started it all. I'm beginning to get worried. Should I assume it just takes time or talk to the doctor about trying a different antibiotic? With all the herxing I keep thinking it must get better but am getting impatient. What do you guys think?

Nevergiveup: It was didfficult to tell with the monthly. We started last year this time with high dose augmentin and a long steroid burst. Two weeks in we saw dramatic improvement. Once off the steroids symptoms returned but not as bad so we moved forward with ivig (low dose). I would see improvement but each month we did ivig things would get bumpy again. After 4 months I knew something wasn't right. I pushed our doctor to try the higher dose and decided to wait per Dr K's advice. Things were tough after that ivig but really settled out after a couple months. At 3 months post I felt she was really healing with few symptoms remaining. Then we were hit with the positive lyme test. I had ordered it just to make sure. I kick myself now for the steroid use in the beginning but we just didn't know. The prior lyme screens through Quest were all negative with just a positive 41 band. I don't know for sure why the low dose monthly didn't work for us but guess it was producing a constant herx and perhaps the dose was not high enough to address the autoimmune portion. One last thing...I've considered my daughter mild for a while and again was shocked she had lyme. Had never pulled a tick off of her. I would advise all parents to run the igenex test to be sure. By the way her C3D was very high and ANA mildly elevated.

Great discussion under this thread! Ihave been debating these same issues privately as well. My daughter was another monthly ivig kid not doing too well untill we finally stopped and saw improvement from waiting. It took a good 3 months to really see I'mprovement. Shortly after we checked for lyme and she was positive. I was shocked because after that last ivig she was doing really well with very mild syptoms. Adding additional antibiotics stirred her symptoms dramatically for a couple months. We even stopped all abx for a while to calm the herxing. It worked. We previously had tested neg for lyme through Quest. Igenex test was positive on lyme specific bands NOT run through other labs. This is why I think it was so important for us to run tests through igenex. One thing I think we can all agree on is pandas starts at a young age. Maybe its an immaturity in the immune system. Over time as the child ages perhaps they pick up other infections that make it more difficult to treat. Perhaps these kids symptoms would resolve as the immune system quiets and matures once all infections have been treated. At least I hope so.

If your daughter tested positive for lyme, the Biaxin alone would not be enough to fully eradicate the lyme. I am not surprised she has slid back some after stopping antibiotics since she still has lyme and possibly other stuff. I would see an ILADS doctor to help treat all microbes completely.

Last post on lyme...for now. I'm tired but for the record, I do not believe all pandas is lyme. I do think a lot more than we know may be complicated by lyme or even lyme by itself. Did anyone else notice the map buster posted showing the distribution of pandas cases? The northeast seemed to be loaded with pandas cases. Faith I hope you have read some of these posts and given it some thought. I hope you test your son for lyme via igenx because I've read some of your posts and frankly lyme seems very possible for him. You do live up here in the northeast don't you?

Yes check for lyme but check properly. My daughters western blot was negative twice when tested through quest. It was positive via igenex because the CDC has removed fingerprint bands from the western blot used by quest, lab corp etc...these bands were removed because a vaccine was in development. They knew if the bands remained on the basic western blot then anyone who received the vaccine would appear positive. Therefore a disclaimer was added to the bottom of the test stating that lyme is a clinical diagnosis and lab results alone are not enough to rule out lyme. It says something like that anyway. Igenex test includes the fingerprint bands for lyme. I know its expensive but compared to the cost of psychiatric care and special tutors its worth it. I think if you start with just the igenex western blot it costs about $300.

This whole journey is and undetermined path. We are just saying to check for lyme. There are kids diagnosed with tourettes and if they are advised to test for strep is that an undeterminded path?

I re-read your post pmom and you did say that there is no proof any of it works. You also said pandas is not lyme and lyme is not pandas. You did aknowledge that a pandas flare could be exacerbated by lyme. I am suggested that anything could trigger the initial auto-immune response. I am sure that will be a debate too but again no one really knows. I really don't begrudge your conviction and feel this is all a beneficial discussion so no hard feelings here. It does seem that certain people have been really harsh towards wendy for posting so much about lyme. I do think you have implied that she is sending parents down the wrong path in testing for lyme.I think faith even called her irresponsible. I rarely post on here because I am always questioning my own decisions and am not completely confident in this stuff but so far my daughter has really been helped. I just feel its important for parents to get the whole picture.

This illness is tough for families emotionally and financially. I think we can all agree on that but pmom are you suggesting that there is no proof that ivig is not at least beneficial in treating pandas? Is it always a cure? No of course not but there is plently of evidence that is does work. If it doesn't then maybe think about a chronic infection preventing the ivig from doing its job. That is Wendy's point. Are you implying that appropriate lyme treatments are not proven necessary in the treatment in chronic lyme? If everyone on this forum waited for 'proof' our kids would be grandparents by the time all of the research was complete and nicely documented. By the way how do you know that a neuropsychiatric auto-immune disease is ONLY triggered by strep? No one knows.I personally view it as an auto-immune response to an infection not specfic only to strep. Again know one knows how it starts in each child. Even Dr Cunningham is the first to say that they just don't know. I believe her research began with strep but didn't she recently say that she believes lyme could trigger a high cam k? Maybe I misunderstood but I asked Dr Cunningham that question last year...if there was anything other than strep that could trigger the response. Her answer was...it is possible and they have not studied all infections in relation. IVIG and lyme testing is expensive yes you are right. I don't think Wendy is trying to scare people into these tests and treatments intentionally but there are a lot of kids on this forum who are not well. I bet those parents want to hear about how to properly rule out all infections before assuming strep is the only microbe at play. Obviously if a parent is satisfied with their childs progress and don't think lyme is at play...then don't test for it but I was on the fence a few months ago. My daughter was doing really well after ivig but not ALL better. I had her tested and she was positive for lyme. Adding the additional antibiotics have made the difference. I have never found a tic on her but living in Connecticut made me wonder. It has been almost a year for us in treating this disease and we have made mistakes and learned from them but my daughter is doing really well now. She is not perfect but getting closer. I want that for all of us and so does Wendy. I don't think others should be offended by that kind of conviction.

Faith you seem so outraged by Wendy's posts on the lyme and pandas connection. Do you begrudge her for leaving no stone unturned in seeking help for her kids? You've been quite a consistent skeptic on this forum for some time and that is fair enough. We all debate on here everyday but I am grateful to people who have shared all of their experiences as personal as they may be. I don't think wendy ever said ivig did not help her son. She is now just advocating that all parents rule out ALL infections before assuming strep is the only issue. Makes sense to me. And you go on to say that 'pandas is not lyme and lyme is not pandas'. Hello!!! Parents talk about exacerbation due to viruses, allergies, and strep exposures all the time. What do you think would happen to a kid with pandas if they get lyme disease? The key here that wendy is trying so hard to get accross is that lyme treatment is intense and requires and experienced lyme doctor to undetstand the complexity of co-infections. Treating these infections layer by layer with multiple antibiotics is much more complicated than prescribing the prophylactic abx typical given to a kid with pandas. I can attest to the fact that 250mg of azyth won't cut it alone. Wendy's son is doing fabulous and I don't think it is fair of you to judge her for being aggressive and brave in this battle. I'm the friend that lives 20 min from lyme connecticut and I may have to fly to SF to break her fingers yet for posting on this forum because I know it takes a lot out of her. She believes in what she is doing and is only trying to share what she has learned. I hope Wendy's kids don't have lyme but if they do I know she will kick it too!

Hi everyone, I haven't posted in a while but felt I should jump on and share our experience. My dd7 diagnosed with pandas seemed fit the strep/sudden onset description perfectly. We did antibiotics and several ivig's with some success. Actually I was putting her at about 90 percent post her ivig in feb but her improvement plateaued and it seemed she could move closer to 100 %. So we ran the igenex lyme test and she was positive for lyme. Previous tests through quest were all negative. We started lyme treatment shortly after and almost immediately we saw an increase in symptoms. I was shocked because I too was in lyme denial and she never had physical symptoms typically associated with lyme. The first two months were bumpy much like what dr k says to expect with ivig. He refers to it as flipping the pages. Now, two months into the lyme treatment she is making progress. Some days a little better than before starting the additional antibiotic. We were told by Dr Jones it could take 9 months or more to get it all. I want to add that it is shocking to me that after months of antibiotics and several ivig's that she could herx with the addition of bactrim. I think these lyme guys know what they are talking about. Sometimes it is the combination of antibiotics that make the difference as it certainly has for our daughter. PLEASE look into the lyme testing with an ILADS doctor and don't trust just anyone with the treatment. Our pandas doc seem to think the 250mg azyth should treat the lyme just fine but that is certainly not the case. No steroids if you have not properly ruled out lyme! Best to all.

Judith I really agree the elizabeth and sfmom about the importance for getting at all of the infections. Surely if your son struggled with the flagyl the he still has lyme and possibly other co-infections preventing him from ridding the strep. I caution the use of a steroid burst as these infections will proliferate with its use. Dose Dr Jones believe your son is rid of lyme? I assume he has checked for all the tic co-infection but as you have probably heard the tests are not conclusive. Ivig may help your son fight the infections but will not 'cure' him if he is still infected. Press Dr Jones and Dr B to go at this thing hard and don't give up.

Bmom Can you tell us who your doctor is and how long ago did you do ivig? What are they telling you? I think my daughter has some seasonal allergies too and have been trying benedry at night.

We see Dr B and I have to say that he was the first dr to really listen and want to help. He certainly did not push us into ivig in fact I pressed hard for it. At the time I think he had only treated a few others. So yes it may be true that he is new to pandas and this was not his life's work but somehow some pandas kids found him. He has been willing to learn and speak with dr k and dr cunningham. How else are we going to get our kids treatment? I also believe that dr k has always said that his opinion is his contribution not the treatment. He has openly shared his protocol with dr B and that's a good thing. We can't really fault dr b for trying to learn. I'm glad to have found dr b and my daughter is better for it.

Oh my gosh I am so sorry to hear about your son. Who is your doctor and what are they telling you? I do know a lot of people (including us) have seen a worsening of symptoms for a few weeks post ivig so maybe this is what you are seeing. Have you ever tried motrin for your son? Some people say that helps. Hang in there and keep us posted.

Melanie Good plan to speak with the Dr in person on Monday but...also maybe if you could get Dr K or Dr Bouboulis to speak with your immunologist regarding the use of the higher dose then she will budge. Dr B is now using the higher dose and maybe she will respect hearing it from another immunologist. He is really flexible and would probably be willing to help. He is treating my daughter and if you are interested PM me and I will give you his contact info. I would even be willing to talk to him for you just to see if he could make the call. He would totally do it. You are not giving up.

Melanie This thread has me a little confused. Your immunologist believes your son has PANDAS and is treating with IVIG for that reason right? Or is she just treating an immune def? IVIG is used at high doses (above 1g/kg) for autoimmune diseases all the time. I am not an expert and am not sure I understand the bone marrow connection but I believe it is where the auto antibodies are produced. IVIG at high doses is know to have immunomodulating benefits. PANDAS, if one is a believer, would know that it is an autoimmune disease. I hope others with more information can add to this discussion. Maybe the monthly low dose will do just fine for your son and I hope so but am just confused about your doctor's remarks.

Dr Cunningham and Dr Bouboulis told me that some children do not respond well to carbohydrate antigens like strep and for this reason may not have raised titers. Also Dr K told me that even if titers are low and a child has symptoms it could be that the infection was long enough ago that the titers are normal but that the auto immune process is still on going. I am re-phrasing from an older email but that is how I remember it.

Ok I'm watching it and am really very scared.