momofgirls

Hi Eljomom, I too remember your daughter's lyme results and based on those and her response to augmentin I would pursue lyme treatment. You have said in previous posts that all of your kids have been bitten by ticks so the risk to exposure is certainly possible. Given the fact that she has not improved with zyth alone I think something more chronic is at play. Many of our children were not diagnosed quickly and still improve with antibiotic treatment when the right infections were addressed. My daughter ticced for over a year before I even considered PANDAS then after 9 months of PANDAS treatment we uncovered lyme. She has improved greatly and I am so thankful that we have been able to get to the root of her tics. I personally do not believe that tourettes is a diagnosis in and of itself but really is only a collection of symptoms given a label. The criteria for tourettes is motor/vocal tics for a year. It is that simple to be diagnosed. So many of us have had to go from doctor to doctor to find what works for our kids and it is exhausting and expensive. What choice do you have other than to keep going. I know you are skeptical of lyme doctors and the antibiotics they prescribe but in my opinion I think you should run to a LLMD. It is definately not too late and you will feel better once you see results. I know we are not suppose to diagnose other people's children and I'm just a mom so take it for what it's worth...I think your daughter has lyme. She will get worse before better when treated but ultimately she will improve.

Hi MMWG, your post caught my eye when I read that your son was experiencing a worsening of symptoms upon starting an antibiotic. I don't know how much you have investigated lyme disease but that can be a classic symptom of lyme. A lot of us on the board have discovered that our children had lyme and other tick borne disease with which you would see a herx response with antibiotics. Meaning a worsening of symptoms as you kill the lyme bacteria. If it were me, I would check for lyme and other tick borne disease in addition to strep. In my mind children with strep induced only symptoms would see relief from antibiotics as opposed to a worsening of symptoms. The opposite is true with lyme disease. You can read up on the lyme board and ask questions over there if you suspect this could be an issue for your son as testing and diagnosing for lyme is complicated. Just a thought, Kim

I was in your shoes about a year ago so here are my thoughts...if you suspect lyme or another chronic infection is holding your childs recovery back then stop doing the high dose ivigs and retest. I do not know if 8 weeks is really even enough time to wait before re-testing, especially if your child has received multiple infusions. The high dose infusions are meant to supress the immune response. The lyme western blot is looking for antibodies and if the immune system is repeatedly hit with ivig, then your testing could likely become even more negative than it was the first time. We had to learn the hard way because we assumed based on cam k score and immune markers that our daughter had "classic" pandas. She received monthly infusions prior to lyme testing. She did seem to improve with ivig and steroids but the improvements did not sustain and after a year of pandas treatment we found lyme, mycoplasma, and bartonella. So after an entire year of full strength zyth and multiple ivig's she was still battling some serious infections. It did not make sense to me to continuously try to quell a fired up immune system without erradicated the underlying infections. I know many people are having some success with infusions so I do not mean to spark a huge debate but if your child is still struggling or not maintaining progress then maybe re-think the infusions. If it were me I would see an llmd and start a higher dose antibiotic regimine to "bring out" the lyme...wait a few months and then maybe retest if you are still unsure about lyme. If cost is an issue, which for most of us it is, then definately get a copy of those results and take them to an llmd. There may be even enough to go on without retesting to start a trial of lyme treatment. Since beginning our lyme journey just over a year ago my daughter has made huge progress. It was certainly not easy in the beginning as the herxing was very hard at times. I felt like we were starting all over and it was hard but I believe now she has a chance at true recovery. Hope this helps with your decisions. Kim

Thanks for this SFmom. Another reason to keep me up at night!

will PM you with his name.

Tami I hesitate to write this as I do not want to jinx things for my daughter but you sound in need of encouragement so here is our experience. My daughter was diagnosed with PANDAS about 2 years ago. She has been symptomatic for 4 years but it took forever to get a diagnosis. We started with typical pandas treatment...antibiotics and steroid burst. She improved greatly with the steroids but the improvement did not last long. We did steroid tapers 3 months in a row and each time we saw less relief. We went forward with monthly ivig and it was a roller coaster. I then did a phone consult with Dr. K and he was against the monthly ivig and told us it would do more harm than good. He advised us to do the one high dose ivig and then stop. We followed his instructions and it did seem to help but again it was not complete and she started slipping again about 4 months out. Then we ran all the lyme testing and she was positive. We saw Dr. J and he started lyme treatment (lyme and bartonella). The next 3 months brought back all symptoms for my daughter and we lost any gains made with previous ivig. I remember thinking...how long can a herx last??? I actually went for a second opinion with another lyme doctor who uses ART. She was positive via ART for lyme, bartonella, mycoplasma, and virus. This doctor used a combination of herbs and antibiotics to work away at each infection (November 2010). At this point I felt determined to complete lyme treatment as an entire year on zythromycin and multiple ivig's did not erradicate any infection. Even though I saw periods of improvement, in my mind it was not true healing as the infections were never treated. The immune response may have been blunted some but the battle only really began with lyme treatment. I believe now based on symptoms resolution and ART that my daughter may have finally erradicated all her infections. Our last visit with our llmd revealed only a low level of lyme in cyst form. All other infections had cleared. Right now I think she has a few mild tics. She looks really good but is not perfect. What I want you to know is that it was very hard all through out lyme treatment. It seemed to take many months to really see an improvement. I will say that I felt like we would see improvement as each co-infection cleared only to be followed with more herxing as her body began to address the next layer of infection. Even the end of lyme treatment was very scary. You imagine this slow steady improvement as treatment goes on but it just wasn't like that for us. I share our experience to hopefully give you confidence to continue working at these infections. Steroids and high dose ivig are immune suppressing...that is why they are used to treat autoimmunity however I personally do not believe these will have any lasting benefit if the underlying infections driving the illness are not treated properly. I know we all have different views on this and I respect that but if your child has been diagnosed with a TBD then I would just prepare myself for a long bumpy ride. Its tough because being on the right combination of antibiotics and addressing co-infections is critical. I think it takes a long time to see sustained improvement because the herxing can be extended. I do think my daughter now has finally reached a stride and I hope she now can begin to heal. Gosh please don't let this post jinx my daughter! I do hope it helps.

I don't think it sounds insane. I can't believe how many of us moms have turned out to have lyme disease. I would have never thought I had lyme. I just thought I was tired and getting old and stressed all of the time. I thought it was normal to wake up a little stiff and foggy headed. I thought everyone had little back things floating in their vision. Little stuff adds up. I am curious to hear what all you learn from your testing and you should never feel like its too much information for this forum. Hope it gives you some answers for your family.

just to follow up on what wendy might have been suggesting regarding ivig being immune suppressing. we discussed this with our doctor too and it was my understanding the the high doses of ivig are used in order to suppress an auto-immune response so therefore are used because they do suppress a faulty immmune response. Low dose may be another story. I don't think anyone really knows what is happening for sure as based on all the different stories on the forum the results have been accross the board. Some kids seem to really benefit, some kids get worse, and some seem to report that especially after repeated HD ivig's, no change is seen at all.

I don't remember if this particular article has been posted but I thought it was a good overview on the biotoxin issue especially in those with the HLA gene. http://www.prohealth.com/library/showarticle.cfm?libid=8849

Kara I would let the staff know in advance to ask Dr J not to discuss it directly in front of your child if you think it might be a problem. Maybe after the exam she could wait in the waiting room with a nurse. The office is small so that might work. Dr J was very direct with my daughter in her diagnosis but was also kind and comforting by telling her she is fixable. She was only 7 at the time so i was a little surprised. Kim

I know that I am a little paranoid about the lyme stuff but I just wanted to reply to this thread with a little different perspective regarding the elevated liver enzymes. I have read that sometimes lyme and other chronic infections can actually cause liver congestion/damage causing the liver enzymes to rise and even cause jaundice. I know you said that the labs were clean and no evidence of tick borne disease were present but if your daughter was receiving high dose ivig prior to testing, isn't it possible that the immune response was supressed resulting in potentially a false negative? I could be totally wrong but it's worth considering re-testing after a good period of time post ivig like maybe 3 months? Anyway, I just did a quick search to see if I could find anything to support my theory. See link below. Again, I could be totally off on this but if your child still has symptoms and elevated liver enzymes, I think it could be due to the underlying infection and maybe not the antibiotics. http://www.ehow.com/about_5139926_can-disease-cause-liver-problems.html

Wilma, What do you mean when you say that Dr. Beals said even if your daughter test positive there is no way to know??? That is strange. I don't understand. I have a neighbor whose son is very sick with lyme, bartonella, mycoplasma, and babesia. He is 15 years old and was diagnosed with schizophrenia at the age of 11. It was only last year this time when we came to know one another and she tested her son for lyme disease. He has been in treatment for almost a year and is doing better but still has a long way to go. My point in sharing this story is that infections can induce psychotic behavior not just what you called OCD. I personally think it just depends on the severity of infection and length of time without treatment. It sounds like you have uncovered at least part of why your daughter is sick. I think it is good that you have an appointment with a lyme doctor as you want to make sure all infections are treated appropriately. I know your daughter's lyme test was negative but sometimes the sickest kids do not test positive untill they have been treated for a while...as their immunce system has been so supressed by the chronic infections.

Im sorry I forgot we've PM'd before. Glad you are getting answers and good luck with treatment. Kim

I wonder this a lot for our PITANDS kids and worry about the use of steroids and high dose IVIG prior to getting all the infections. I have read that high dose long term steroids can reduce serum IGG levels. I tried to include the link in my post but couldn't get it to work but if you are interested I had just done a quick search: do steroids lower serum IGG's Kim

I would agree treat the bartonella at least. Our doctor used a combination of zyth/omnicef with herbs samento and cumanda for lyme and bartonella. Some doctors use bactrim or rifampin. What about the Igenex western blot? What if any bands were reactive? Kim

I think it is important to treat for all infections. If your daughter was positive for lyme and bartonella or even just bartonella, it is likely they are contributing to her illness. What antibiotic are they prescribing for the bartonella? A lot of times rifampin is used and it also happens to be good for strep if you are concerned about strep exposure. My daughter was positive for mycoplasma, bartonella, and lyme and was given zyth and omnicef together because it addresses all three infections. Most lyme protocols will cover strep.

Gosh Laure I am sorry things have gotten so scary with your daughter. I think it is okay to take a break from antibiotics and try heavy detox for a bit. If it were me, I would keep the probiotics and give as much bentonite (2 cups a day?) or charcoal pills (20 per day)as you can. Maybe also start her on motrin daily to help with inflammation. I am sure others will chime in with advice too. Your appointment with the new LLMD can't come soon enough. Waiting is so hard when you are so scared. Hopefully you will get good direction and can begin a treatment plan with confidence that you are doing all the right things. Unfortunately, even then it can take time to see relief. Hope you see some improvement with this break in treatment and intense detox. Kim

smartyjones, yes the virus was diagnosed via ART and actually the mycoplasma and bartonella too. Blood work only revealed lyme and we had a rash that Dr. J identified as bartonella. The ART doctor prescribed a homeopathic antiviral for the virus. He used a combination of antibiotics and herbs for the bacterial infections. I posted this on the pandas board last night because it was relevant to one of the moms over there but in regards to ivig being used to treat the autoimmunity while a chronic infection is still present...Dr. B monitored my daughter's C3D (immune complexes) all last year. They were very high and we hoped ivig would bring them down. This was before we knew with what she was infected as her strep titers we normal and we hadn't checked for lyme. After ivig the immune complexes did come down some but when we re-tested 6 weeks later to see if they would continue to go down, they had gone up again. Right around that same period we tested for lyme and found out she was positive. At that point we realized that the immune complexes were probably due to the chronic infection and would not resolve with ivig without erradicating the lyme. So it's just my opinion, but for us the ivig was not successful because the infection had not been cleared. momofgirls -- curious -- were there viral infections you didn't mention that you found by ART or was it general protocol to use antivirals? did you treat with traditional abx and meds? yes, what you mention about PEX and IVIG has always stumped me also. a leading dr told me about a year ago, that the IVIG shuts down the immune system and when it reboots, it doesn't have the same problem - just like rebooting your computer. i just can't understand why it won't go into the same malfunctioning pattern if the infection is still there that caused it in the first place. the only thing i've been able to piece together is the antibodies also help the infection b/c some of these infections are ones that the body should be able to kick on it's own but our kids don't seem to -- i don't know -- that's always stumped me about ivig.

ART is a diagnostic tool some alternative practicioners use to find the source of disease. Its not conventional and I thought it was pretty wierd when I first heard about it but I think it has been very valuable. Here is a link that explains. http://naturalhealthinnovations.net/autonomic-response-testing.html

She was igm positive. Not a light up bold positive but Igenex positive that we confirmed with a strong herx reaction to lyme treatment and ART. Keep in mind also that these kids with elevated immune complexes may be falsely negative because the antibodies in which the western blot look for, are bound within the complexes. They are not circulating freely and may not register on a blood test. Some lyme doctors start treatment and retest along the way looking for the patient to test "more" positive as they are treated. Our lyme doctor did say that an elevated C3D is common with lyme. My daughter has done well with lyme treatment and I feel like we have gotten to the root of her problems now. It has not been easy because it is hard to stay strong during a herx and they can last for weeks. I wish I could say she was 100% but she is not. She still has mild but frequent tics. We hope that she continues to improve with treatment.

My daughter is the one wendy is speaking of...she had very high C3D always above 80. At one point after ivig they went down but when retested 6 weeks later (no ivig in between tests) they were back up. So theoretically ivig will break up the complexes if the infection is cleared but they will continue to form regardless of ivig if they are still infected. My daughter had mycoplasma, bartonella, and lyme. Our lyme doctor did say that they are common in lyme patients and had seen them as high as 200. He said they should resolve with treatment and did not feel the need to monitor them during treatment. They take a long time to clear. We stopped doing the ivig's as it seemed pointless with all of the infections left untreated.

Laure I am sorry your daughter is struggling so much with lyme treatment. Its soooo hard to tell the difference between herx, new exposure, and treatment just not working. I can say for us at times when I was unclear, we would stop all abx for a couple days and watch for a sign of improvement. This usually helped but unfortunately as soon as abx were started the symptoms would all return quickly...not that they stopped completely but we did get some relief. At this point it sounds like you almost need to clear the slate and take a break from treatment. Then maybe add things back in slowly. The longest break we took was for two weeks. Late last summer when we were 2 months into lyme treatment I felt very scared and unsure. Just the addition of bactrim to zyth for lyme/bartonella brought back all my daughter's tics. I think I called Dr. J's office once a week for reassurance and finally in August he suggested ivig. We went through with it and did not see any benefit. That is when we took the two week break from abx and moved on to a lyme doctor that uses ART. I was surprised that he found mycoplasma, bartonella, and lyme still after all the abx and ivig's my daughter had received. I guess what I am trying to say is that ivig and pex do not erradicate infection. Our lyme doctor has worked away at the infections one layer at a time. We started with antivirals and treated for mycoplasma. Then we addressed bartonella and now finally she is down to just lyme. It was difficult at times but I have to say the infections cleared one at a time as our doctor expected. I understand that not everyone is open to using ART as it is not conventional but I was desperate and it has turned out to be a life saver for us. In my opinion, pex may or may not provide temporary relief for your daughter but I do not think it will hold long as your daughter still clearly has too many infections. We have never done pex but there are a few other lyme kids on this forum that did do pex and saw little to no benefit. Those children that did benefit ultimately regressed. I am trying to understand Dr. J's theory in advising you to pursue pex. I get that there are bad antibodies circulcating and too many toxins in the system but it seems that if you filter those out without erradicating the infections triggering the disease, then the symptoms will just return. To me the same can be said for ivig...how do you correct an autoimmune disorder triggered by infection with ivig without getting rid of the infection causing the disease. I don't want to offend anyone because I know there are some exceptions and some people have benefited from these treatments. It's just these lyme kids are tricky. Anyway, just my thoughts but it makes more sense to me to take a break from treatment to see if this could be an extended herx then maybe add things in slowly after the break. Good luck my thoughts are with you. Kim

I would ask your friend have you really ruled out all infections? How did you test for Lyme? Stories like this one pull at my heart strings and I hope your friend hears all sides to the Lyme debate. If ivig and steroids are not bringing sustained improvement, and it sounds like they are not, take a second, deeper look into other infections that may be at work. Its so hard because what works for one child may not work for another depending on so many variables. Read some of the other threads on what has worked for others where steroids, ivig, and pex have failed. Most have uncovered a chronic infection. a lot have uncovered Lyme.

Dr Cunningham would consider those results to be in the pandas range. What a lot of us are finding is that many infections could elevate the cam k. I think it would be good to see a doctor who understands tick borne disease to rule out Lyme and co-infections. Lyme literate doctors typically use specialty labs like igenex for testing because standard tests run by quest or labcorp do not test for all Lyme significant bands. I assume you are from the northeast given your screen name so Lyme could be a problem. if mycoplasma is an issue, a good Lyme doctor should check for that too. You could contact ILADS.org for a doctor referral hopefully near you.

If it were me, I would rule out all infections espeicially lyme, bartonella, mycoplasma, babesia. Many of us have discovered a multitude of infections at the root of our childs PITANDS.