momofgirls

Hi Coco Im not sure what I would do with the antibiotics so hopefully others will chime in but I think it's a good idea to start on the weekend and give lots of charcoal or bentonite several hours after the diflucan. At one point I was giving my daughter up to 15 charcoal pills a night when starting Lyme treatment. I'm not sure I ever really saw a difference with the herx but I would think it would be very helpful with yeast die off.

Dr. Corson touches on PANDAS at a recent conference for anyone interested. http://betterhealthguy.com/joomla/blog/257-bioresource-2012-conference

Hi Dedee, I sent you a PM. Kim

Can you tell us with what lab your son was most recently tested for lyme? Were there any indeterminant bands in addition to the positive 66? My daughter was a patient of Dr. B's some time ago. She was negative on the Quest western blot and positive via Igenex. We ended us moving on to a lyme doctor as Dr. B was and is still very inexperienced with tick born disease. I am not trying to ruffle feathers as I know he has been so helpful to many kids but this stuff is way out of his area of expertise. The lab report indicated babesia? I would be very concerned about this and it is a little scary that Dr. B said your son was negative for all co-infections. Babesia is a serious parasitic infection usually accompanied by lyme and needs proper treatment as RNmom said in her post. Given the history of a previously positive lyme test and since the more recent test is picking up babesia, I would spend my money on a lyme doctor instead of paying for another phone consult with Dr. B.. Also steroids prior to testing can suppress the immune system resulting in a false negative western blot. In my mind I would look for a lyme doctor to help you further.

Michael/Julia I've read just a little about the GcMAF shots being used to boost the immune system but am wondering what their effect on autoimmunity might be. Do either of you have the additional information on how it would work for a PANDAS patient?

Susan, Your comments on puberty made me laugh, so sad the things we find funny in our dark, weird world. Can I ask what you are doing for the heavy metal detox? Is she on antibiotics? I have a mom theory but have no idea if it is even possible. With all the talk about metals, detox, KPU, and biofilm treatment I am wondering if it is possible that when one is treated for metals...if the metals are part of the biofilm matrix and are pulled out, wouldn't bugs like bartonella or lyme or whatever else is hiding within the biofilm come out too? Hence a herx rash like you are seeing? Could you be killing more bartonella and other stuff as your daughter is treated for metals because they have been hiding within the biofilms? I don't know if this even makes sense but I wonder. Kim

Its not hard for me to believe that 12 girls in one high school all may have contracted lyme. While we all have had different triggers prior to "sudden onset", many of us found that our children had lyme underneath. So for us it appeared to be a strep induced illness but at the end of the day, there turned out to be much more going on prior to the final blow to the immune system. I am not suggesting that each of these girls just picked up lyme disease this year, but it is very possible the've had it for a while and all were recently exposed to the same trigger (vaccine, strep, or whatever). Most of us on the forum by now have realized that there were many layers of infections and multiple factors preceding the onset of this illness.

Oh Ellen, I am so sorry to hear what you guys are going through. I can't imagine how you are coping but hope you find answers for your son. I want to share a story of a teenage boy I lived next door to in Connecticut. He was diagnosed with schizophrenia at age 10 or 11 I think and was hospitalized several times. Ultimately he was diagnosed with Lyme, bartonella, babesia, mycoplasma, and more. He has been undergoing treatment for his infections for over a year now ( he is now 15 I think). I no longer live in Connecticut but I continue to speak with his mother and gets updates on his progress. She tells me he has made real good gains throughout treatment although he still has a long way to go. He is in a much better place now than he was 2 years ago. His journey not unlike your sons has been heartbreaking and rough but iI know his mother still has hope for his future as she has seen him improve slowly with time This is so hard and I would not presume to have the answers you need but hope that one day you will be able to post a positive update. I wish you guys all the best. Kim

Lisa I find it hard to believe that your son is the first of his patients to not respond to ivig. Actually my daughter may have been only his 3rd pandas case 2 years ago. She did not do well with ivig and Lyme treatment has turned her around. I feel like I remember your son's Lyme results and they were technically negative but he was positive or at least indeterminate for some pretty specific bands. I don't think Dr B is really all that well versed in Lyme. He is trying and learning but it's a complicated field even for those that have been treating for years. For what it's worth, I think seeing a Lyme doctor is a good next step.

Im glad you are going to see Dr. B. He will help run all the tests but I want to tell you that what a lot of us have discovered is that this disease...(call it what you want, PANDAS, PITANDS, PANS)can be triggered by many different or multiple infections. For some it can be strep but for others there have been layers of infection that triggered the illness. I just want to encourage you to rule out all chronic infections including strep, mycoplasma, lyme, bartonella, and babesia. Lyme, bartonella, and babesia are all tick born infections that need to be treated with a combination of antibiotics by a skilled lyme literate doctor. It isn't as simple as treating for strep if your child is infected with one of these infections. Some of us on this forum went with the PANDAS diagnosis but when our children did not respond to appropriate treatment, we were forced to dig deeper and look at some of these more complex infections. Dr. B will run the labs but I would insist that he check for lyme and co-infections via IGENEX, a tick born disease specialty lab. Lyme testing is complicated and the standard tests run by Quest or Labcorp are not adequate when trying to rule out lyme. I don't want to overwhelm you with information right out of the gate but your post made me suspicious of lyme. Given that your son is experiencing issues with his thyroid and that you live New York, a lyme endemic area of the country, I think it's important that you look at all of these possibilities. We wasted a year on PANDAS treatment before we discovered lyme disease in my daughter and I wish I would have known then what I know now. Please check out the lyme forum. The folks over there will answere questions too. In the meantime I think going to see Dr. B is a good start.

Just wanted to add my thoughts to your questionable lyme results. I'm not sure when you tested in relation to the IVIG's but its my understanding that the high dose is very immuno suppressive. If you have tested for Lyme after doing a course of steroids or ivig the results could be falsely negative. The western blot is testing for antibodies to Lyme and if the immune system has been suppressed by ivig or steroids, there may not be a lot of antibodies being generated even if one is infected with lyme or co-infections. If you are not seeing benefit from the ivig then I would consider stopping and really re-considering lyme.. Some lyme doctors will try a course of combination antibiotics in attempt to bring the Lyme out and then test again. A good lyme doctor could also advise you on other tests that do not measure antibodies but instead test for DNA etc. .

Ok So this thread inspired me to clean out my washing machine at 9 pm tonight! Armed with bleach and gloves I started scrubbing like a total OCD mom. After about an hour of scrubbing and rinsing I felt wetness through my slippers. i broke it. Water all over my floor. Big mess. Husband thought I was nuts before, he's really going to love me now. Thought you all would appreciate my mania. This illness is making me crazy.

Wilma, I don't remember if you have already said but how old is your daughter? I just want to remind you that Sammy Maloney was I think 11 when diagnosed with PANDAS. He seems to be doing really great now. I don't think there is an easy fix to this illness and we can all make suggetions and talk about what has helped our children but I resist the idea that she is brain damaged and that these behaviors are permanent. None of us can say for sure of course, but I would not give up. You've seen glimpses of improvement. Hold on to that and keep researching. That is my only advice. For us there were multiple infections at play and it was definately a case of peeling away at the layers of the onion. We had to address bacteria and viral infections. Detox, herbal remedies, and other natural support were important too. I wish for all of us that it were easy but its not. At the very least you know your daughter has bartonella. Maybe there are other co-infections, detox issues etc. that need to be addressed. Just my thoughts, hope it helps.