momofgirls

Can I ask how did Dr T rule out lyme? I know he is not a fan of Igenex testing but in our experience it was very beneficial.

My daughter did great with seroids and later found out she had lyme. I think we had supressed the immune response/reduced inflamation so we saw improvement but lyme was still there along with bartonella. Glad you are ruling out lyme.

I have heard the steroids effect can be less effective over time too. Not sure exactly why but I believe it may have to do with underlying infections not being erradicated. It seems that maybe the prednisone can damper the immune response for a while but without really clearing the infections then the treatment does not hold. This has been the case in some of us families that saw temporary relief from IVIG later to find lyme, mycoplasma, bartonella etc... If there is still lingering strep and myco plasma I would consider really working on getting those titers down. Also has Dr. T checked for lyme? Its could be preventing your son from really clearing the other bacterias.

I highly suggest checking for lyme and co-infections. For my daughter it turned out to be lyme, bartonella, and a chronic mycoplasma infection. I understand you have tried antibiotics and IVIG but unless you erradicate the underlying infection these treatments alone seem to provide only temporary relief. We did multiple IVIGs for my daughter and saw some improvement but it wasn't until we started addressing the multiple infections did we see sustainable improvement. Good luck and check out IGENEX testing for lyme and maybe contact ILADS for a doctor referral near you. These doctors will test for all infections/viruses and treat them appropriately.

I really wouldn't put the lyme to rest just yet. Bands 30 and 31 can cross react with viruses but your daughter was also IGG indeterminant on band 34 and IGM indeterminant on bands 83-93. These are also significant lyme bands. I spoke with Dr. Harris too some time back about my daughter's results. While our results were clearly positive, I still questioned the cross-reactivity. He told me that band 34 was lyme specific and was one that does not cross-react. An indeterminant lyme specific band should be closely looked at when a patient is symptomatic. Where there is smoke there is fire so to speak. Given your daughter's symptoms and suspicious lyme results, I still think it would be wise to see a good lyme doctor. If in fact your daughter does not have lyme, I would still consider checking for co-infections like bartonella, myco. p, erlichia, etc... A good lyme doctor will do that. Also has did Dr. Latimer check your daughter's circulating immune complexes? I don't think you posted about those results so assume that test was not run. If these are elevated, as they sometimes are in lyme, then the patient may not produce a strong positive via western blot. Lyme doctors do re-test throughout treatment and in many cases their western blot turns more positive with treatment. Hang in there, you will find the answers! Kim

I understand that some are skeptical of lyme testing results. I was too initially, untill my daughter herxed upon the addition af a second antibiotic this past spring. She was doing very well but when we added to her treatment we saw a pretty strong herx to the drugs followed by a slow settling of symptoms. I too was diagnosed with lyme and felt like a truck hit me when starting my treatment. I don't feel like that now. We all HOPE we have things figured out and I too have been wrong before. The 'experts' treating my daughter have been wrong too but what I feel i have learned is that pandas is not always so strait forward for some. Worried dad, I unederstand your son presents with pandas classicly and no one is suggesting he does not have pandas but just that there may have been some chronic infection brewing underneath and maybe why pandas struck him. I don't know if it is possible, but in some cases could this be a disease of multiple infections causing the immune system to cave when contracting strep. I said SOME cases. I guess we all want to understand why this happened to our children and so we keep digging. Right or wrong as long as the child improves, who cares? I do not think it is by chance that a child improves with lyme treatment and they also have a false positive lyme test plus co-infections. So if infection specific treatment works for lyme and co-infectioms, its just because the child needed more abx and anti malaria drugs and cyst busting drugs??? Not because they did in fact have these infections? That is a pretty biased statement. We should try to keep in mind however that there are kids who have not been able to achieve a remission of symptoms and have gone on to uncover lyme.

Pmom, you misunderstand me. I didn't mean to imply that you were being nasty but that other lyme debates have turned nasty and I really didn't want this one to become that way too. Also... you should always feel free to post ESPECIALLY when your kids are doing well. We all need those stories and I do wish you all well. I was just trying to have a healthy debate once again about ruling out lyme. I just don't think it should be dismissed if someone does test positive for lyme and a co-infection. No harm intended.

Pmom, This doesn't have to be a nasty debate. I saw your update yesterday and really felt happy to hear how great your kids are doing. But there really are a lot of children still struggling. There are parents who have been members of this board for years and still their children suffer. Why??? Look, all that is really important is that parents get the information they need to help their child recover. Some of these kids reach their teens and have undergone multiple PEX's and IVIG's without much relief only to go on and recently test positive for lyme and co-infections. I am not saying it is all lyme but quite a bit of it seems to be. Your children are well and that is wonderful but what about the children who do not improve with standard pandas treatments? Really not trying to start a dispute here but it can't go unnoticed.

We met with Dr. J.. He is very impressive. No doctor has ever performed a physical on my child as in depth. He diagnosed my daughter with lyme and bartonella. He also explained to me that often children who have been sick for a very long time only show IGM bands which in his mind can indicate a chronic long term infection, especially when band 31 is present. Throughout treatment, he retests patients and likes to see them convert to IGG positive. This is a healthier response to lyme and shows the immune system is doing a good job fighting the infection. He also explained that elevated C3D (immune complexes) are antigen/antibody complexes. The antibodies within these complexes are IGG and when these are present, the IGG portion of the western blot may therefore be negative. This is why the IGM portion of the test is actually very important. These complexes are damaging in that they deposit in tissues and organs and create inflammation. Just because the western blot doesn't pick them up does not mean they are not being generated. This is why lyme testing is complicated and only an experienced lyme doctor will know to look for these clues. Immune complexes can be present in other disease but are very common in lyme patients. I asked Dr. J if had ever seen a child with lyme present like mine with tics and OCD. He laughed a little and said oh yes...maybe 500 or so probably more. I know Dr. J and Dr. C have been in contact but her diagnostitc criteria for lyme is quite different than his. Hopefuly they will continue to talk and all will benefit. I respect them both. I really feel it is important to investigate all infectious causes when your child is sick with "PANDAS" symptoms. There are a lot of parents on this forum that put all their faith into zithromycin and augmentin. Many many have tried IVIG and PEX and still their children suffered or maybe their recovery was long, difficult, and incomplete. Some of these kids get diagnosed with PANDAS without any raised strep titers and a positive response to a steroid burst. My daughter did well with steroids...that doesn't rule out lyme. Parents of children with lyme continues to post what we have learned only because we don't want other children who do not get well with typical pandas treatment to give up. I believe that when IVIG or PEX fail repeatedly...there may be a reason. There are other infections besides strep at work in many of our children. It's a little naive to think otherwise.

Wilma, I hope we can help in finding some answers for your daughter. Maybe you could just post them by typing them out as you would any other post. Are these Igenex lyme western blot results? Kim

Eljomom, if I remember right your daughter's western blot was suspect for lyme. You probably don't want to hear this again but I feel it's worth considering. You are right to wonder...why no wane in tics if pandas is auto-immune and there is no underlying infection? It is my opinion that there my be an underlying lyme infection in your daughter that is driving the reactivity. I remember her result and quite a few of us thought it was worth seeing a lyme doctor. Lyme patients flare with illness and since her symptoms are tics then I would expect her to tics to flare with viruses as well. I really don't think you will see a lot of improvement untill the underlying infection is addressed. Have you read any of the threads on the herxeimer reaction? They may be of help. When lyme is treated patients often experience a temporary worsening of symptoms due to the die off of the bacteria. I don't believe this reaction is typically seen in kids with tics due to strep as the herxeimer reaction only occurs with certain types of bacteria like lyme. This is usually taken as indication that the medication is working. Sometimes it can take a few weeks or longer for things to settle down depending on the bacteria load but the right antibiotic combo needs to be used so to really beat down the bacteria otherwise treatment will just stall. Lyme is usually treated with a combination of abx so I am not sure that zyth alone would make the difference. I am sure you will find the answers for your daughter but I really think a good lyme doctor can help. Good luck, kim

Sigh, worried dad...I am sorry you are having to explore lyme/co-infections but really glad you are doing so. I know how hard you guys have fought for your son but I would hate for your son to slip once taken off HD augmentin. He is positive for lyme and a co-infection. It's tempting to look past these results as a parent who has already fought so hard but I urge you to seek the advice of an LLMD as others have already advised. You may have beaten the lyme in to cyst form and symptoms may have resolved while doing so but don't kid yourself. It's not gone. Lyme treatment requires follow through with cyst busting drugs to truly get it all. Co-infections require specific antibiotics. This task is daunting but you have come this far, don't stop now. I really believe you are more than half way there but only a really good lyme doctor can advise you now. The antibodies to the bands your son tested positive for are very lyme specific and do not cross-react with strep. Good luck and big hug. It's better that you know now so your son is truly able to beat this illness. kim

Ifran No the CD3 is not the same as C3D. Your doctor order the T cell panel. C3D is circulating immune complexes and is not related to that test. I don't understand everything about the testing your doctor ordered but only know it is related to immune function. We have been talking about a little different. Sorry I am of no help interpreting your child results. Kim

Eljomom I see what you are asking...even Igenex reports your daughter's results negative. We are more concerned with the lyme specific bands for which your daughter tested either positive or IND. For example on her igm she is double pos on band 31 and IND on 41. Band 31 is considered very lyme specific and if the 41 was positive instead of IND then her test would be considered positive by Igenex. The IND band suggests something weakly triggered band 41. Same goes for her IgG portion... If I remember right she was IND on band 39 (another lyme specific band) and band 41 was actually positive on this portion of the test. So if there was a little more response on band 39 it would also have been considered a positive test. Also bands 83-93 and band 58 are lyme specific bands. There was reactivity in those as well. Long story short, a good lyme doctor will look at which bands she reacted to and if there are lyme specific bands with symptoms then they will usually do further testing or treat. There are many factors that should be considered in reading the western blot and diagnosing lyme but a good doctor will help with this. Not trying to push anyone in to a lyme diagnosis but these results look suspicious to me.

I agree, I think these results are very likely lyme indicative. There are many reasons one may have a low antibody response ie...immune complexes or it may be hidden in the tissues and organs. Often times treatment will make results more positive. See a good ILADS doctor. Visit ILADS.org for doctor referral and information. its a journey, good luck. Kim

I agree with the other's who have posted...lyme lyme lyme. As Keithandelizabeth said there are many reasons for low antibody response. Elevated immune complexes, hidden in the tissues and organs. Often times these results become more positive with treatment. Dr. Latimer is great but I would definately see and ILADS doctor for treatment. Visit the ILADS.org website for doctor referral and information. Good luck and keep us posted, its a journey. Kim

Hmmm have you received a copy of your igenex test results? Any lyme specific bands show up as positive or IND? I ask because lyme testing is tricky and many factors can impact the test ie...circulating immune complexes. Also some doctors treat elevated IgG myco p titers as active infection and do not assume it is a past infection. Something about myco p going chronic and the igm no longer elevates, only elevated igg. There is some interesting stuff on myco p and auto immunity. So if it were me I would post your igenex results on the lyme forum and double check the myco p titer to make sure neither igg not igm were elevated.

norcalmom I just thought I would ask if you have tested for circulating immune complexes (C3D)? There is a lot written on these and how they are common in lyme patients however if very elevated the patient may test falsely negative because the antibodies are bound within these complexes. My daughter was positive for lyme but not a lot of bands positive...just enough to be considered positive with indeterminants as well. Her C3D was always elevated up around 100 which is pretty high. Obviously this might not be the case for everyone but I wanted to share this bit with you. I really think it would be worth pursuing further testing to completely rule out lyme. Good luck.

sigh, this is a tough debate among those of us who have children with lyme. My daughter had 4 IVIG's this time last year before we even properly tested for lyme. I wish I knew then what I know now in that IVIG seemed to constantly stir her symptoms each month and it wasn't until we stopped doing them did we really begin to see improvement. After all those IVIG's and daily antibiotics she still tested positive for lyme and bartonella. So for us it did not abate symptoms and did not help "boost the immune system" so to better fight the infection, because in the end she still had lyme and bartonella. I really think that treating the lyme/co-infections has made the most difference for my daughter and I now know that when we see gains, that it is because we have erradicated infection not temporarily suspressed the immune response to them as IVIG and steroids seemed to do. Lyme treatment is complicated and is not just a matter of adding additional antibiotics. LLMD's are really good when it comes to finding infections and using the RIGHT combination of antibiotics needed. I hope this makes sense because I think a lot of these children can get well if their infections are identified and properly treated right from the start. My daughter was diagnosed backwards in a sense and our family struggled. This is just our experience and may not be the same for others but there seems to be a trend like ours with many other children who have gone down this same path.

I am positive for lyme. I've had many mild symptoms for years and never thought much of any of them...muscle aches, head aches, floaters, brain fog mostly in the morning, episodes of blurry vision, and fatigue. Most of these were really not bothersome and I always just thought I was stressed and tired. Once I began treatment, all of these things intensified and I was shocked. I really don't know if my daughter's lyme is congenital but it makes me wonder. Kim

Vickie,that is interesting that your kids occasionally break out in hives when "shedding" an infection. I think that is actually what lyme mom is suggesting in her post. It's possible that children with lyme break out when beginning treatment with an antibiotic as well without it being directly related to the antibiotic itself. I am not saying that this is absolutely what is happening to tamtrums but I think when a child seems "allergic" to every antibiotic they try then something just isn't right. My advice would be to rule out lyme and co-infections. On a side note, my neighbor's son was diagnosed with schizophrenia at age 11. I came to know her more closely this past summer when she opened up about her son's illness. His symptoms sounded more like severe OCD to me and I suggested she have some blood work run to rule out an underlying infection. She found lyme and mycoplasma. Her son is now being treated by an llmd and his last visit with the doctor revealed a bartonella rash on his chest and legs (classic stretch marks). Blood tests for bartonella were all negative. Since this boy rarely leaves his house, we suspect that this in fact is a die off rash as opposed to a recent tick bite. I bring this up only to share that when you start treating for this stuff all kinds of things can show up. good luck! Kim

Oh my gosh Cobbie, I am sorry and am sure you are completely overwhelmed. Poor little guy. At least now you know! You have really gotten to the root of his problems and now you can get him the help he needs. He can now begin to recover. What is your doctor doing to address viruses, if anything? Good luck! Kim

Eljomom Who diagnosed my daughter? I did! Ha ha she was not a sudden dramatic onset of "PANDAS" like behavior. She started with mild tics and then with each illness they grew somewhat worse and would reprieve some in between so I went to see Dr. B and told him I thought my daughter had PANDAS. He is pretty agreeable in that he feels most kids who tic should be worked up to rule stuff out. She had pretty high immune complexes but no elevated strep at the time so we went with the pandas diagnosis when she responded to antibiotics and steroids. Nine months later, I looked into IGENEX testing thanks to the lyme moms posting on this forum. Bingo! All that time we had no idea really what we were treating but assumed it was some sort of infectious triggered tic disorder. We now see a lyme literate physician for lyme treatment. A combination of antibiotics are typically needed for long term to treat lyme so if your daughter has lyme, I would see an LLMD.

Hi Eljomom, I just wanted to say that my daughter has beautiful handwriting and drawing skills. She presents with mostly tics and milder OCD. She tested positive for lyme, bartonella, and mycoplasma pneumonia. Her camk was only 137 and antineuronal titers were normal. I think all these kids can present very differently and still have an infectious triggered tic/anxiety disorder. I have heard great things about Dr. Latimer so I am sure you are in good hands. Glad to hear she is running the IGENEX test for lyme. Don't worry, there is probably an infection in your daughter somewhere to blame for her symptoms. Don't give up looking. Hope that helps. Kim

Hi kmom I agree with pacific mama in that you really need to see a lyme literate doctor to rule out lyme. Also the local lyme doctor's receptionist that told you sometimes multiple testing is need because lyme does not hang out in the blood sounds well informed. I have spoken with others who have reported that they only tested positive sometime after treatment was started. A good lyme doctor will know how to bring it out if it is there. You do live in a high lyme endemic area and if it were me I would pursue further evaluation. Good luck and keep us posted, Kim