KeithandElizabeth

Hi Susan: I would definitely do the IGENEX lyme test as well as the coinfections and mycoplasma. Please let us know how she is doing. Elizabeth

Hi Robin: Strep was our big trigger for PANDAS symptoms. I believe that in our case, both of my children had lyme and its coinfections but they did not have any symptoms of it until they got strep, which threw them over the edge. As Pacificmom posted recently, any of this microbes can cause PANDAS/PITANDS and it is important to check for them all, including strep, mycoplasma, lyme and its coinfections. Elizabeth

This is the big question!! I speak with several moms who are also dealing with PANDAS/PITANDS and lyme and they see an immunologist as well and the problem is that all of the immunologists seem soooo IVIG happy. Our immunologist is also very biased towards IVIG. So, our experience has been interesting. We have two children with PANDAS and/or lyme disease. We did a high dose IVIG with our 8 year old son and we saw great improvements, but the improvements did not last. We than began doing monthly IVIG's and he actually started to become worse. We then figured out the lyme piece as we did our last high dose IVIG on February 4th (7 months ago). Based on Dr. K's advice, we stopped doing the IVIG's and we started treating for lyme and all of the coinfections. Our son is doing great now, maybe averaging 90% better. We also began treating our daughter for lyme and canceled her IVIG and decided to wait until we finished the lyme treatment. She is also doing great (not perfect) and is maybe 93% better. So, I guess I am biased in treating or at least getting a jump start on the lyme treatment. I think that some of these kids who have a heavy lyme germ load either have a more difficult time post IVIG or they do not see any change post IVIG. And there are some children who were helped with the first IVIG during lyme treatment, but not as much with the additional IVIG's. So, we have one doctor, the immunologist, who wants us to do monthly high dose IVIG's and we have our lyme doctor who feels that we do not need to do the IVIG. And then we consulted with an oncologist, who did our first IVIG, and has 5 IVIG rooms in his office and he felt that a body can become dependent on IVIG's and that multiple IVIG's were not the solution. Three different opinions. If I had to do it all over again, I would have at least treated the lyme for a good three months before doing the IVIG. And, if I was seeing great improvement, then I would keep waiting on the IVIG until we needed it. Sorry for the ramble, but I am always analyzing this question myself. Elizabeth

Yes, at one point in time he had lyme, babesia, bartonella, mycoplasma and strep. We began this journey doing monthly IVIG's and I think that the IVIG's were creating too much of a herx and this is when he completely zoned out. We stopped doing the IVIG's and decided to follow Dr. K's approach of treating the lyme first and then doing the IVIG when we were done treating the infection and our son's last IVIG was 7 months ago. The first 3 months of lyme treatment was bumpy, but we saw an upward trend each month. Our son has been on Azithromycin and Omnicef for almost 5 months and then the last month, he has been on tindamax for the cysts. He has also been on mepron for the babesia. Elizabeth

My son reached this "zoned out" stage as well! He also has lyme disease and he is 5 months into lyme treatment and he is doing really well and is no longer "zoned out" and is completely interactive with his friends and family now. He did reach a stage where he could not even sit at the table and eat dinner with us. So, I really feel that once your daughter begins to get rid of the infections, she will begin to cry and interact again. Elizabeth

Nancy: We definitely saw things post IVIG that we had not seen before and this can be part of the "sawtooth" healing. Have you already ruled out mycoplasma (even if the IGM is negative, I would check to make sure the IGG is also negative) and lyme and the coinfections? If this is a herxing symptom, I would also consider bentonite clay or charcoal pills to help with the detox. I can understand how stressed you must feel and hopefully this will be a short term situation. Please keep us posted. Elizabeth

Hi Sheila: I also have mixed feelings about a separate forum, but feel that it is worth a try. Both of my children have lyme disease and I would never have ventured into the lyme forum because they only have "PANDAS" symptoms versus the typical physical symptoms that you sometimes see with lyme. So, I guess my point is that if I did not see lyme mom and Pacific mom's posts on the PANDAS forum, I do not think I would have EVER thought of lyme. Even as we did the lyme tests, I thought they would be negative. So, I hope that a separate forum does not detract some of these PANDAS children who may have lyme as one of their microbes creating their symptoms from doing the IGENEX lyme tests. I am also wondering if this forum would be for all who have lyme or just for children who have lyme. There are so many lyme forums out there right now for adults who have chronic lyme and it is often difficult to find appropriate treatment plans/options for children who are dealing with lyme. Just some thoughts...... Elizabeth

I know that it is frightening to find out that your child has lyme disease, but it can explain why your child has not reached 100% with the typical PANDAS treatment and we have found that the correct antibiotic combo has really helped both our children to overcome their "PANDAS" symptoms. Did your doctor give you a time frame for healing the lyme and did he mention testing for coinfections? Elizabeth

Both of our children have lyme as well and the correct antibiotic lyme treatment seemed to help us more with TICS than the multiple IVIG's did. Are you currently seeing a very good ILADS doctor for the lyme? Elizabeth

My IGENEX test was negative for bartonella, and yet, my doctor does the muscle testing and said that I did have bartonella. He put me on 2 antibiotics for 4 months and all of my thigh cramps (which I thought was sciatica) and my eye twitches went away. The problem is that there are MANY strains of each of these bacterias/parasites and the coinfections test does not check for all strains. I believe I had the bartonella strain from fleas from my dog versus the bartonella that you can get from TICS. Anyway, I am glad that you are keeping your appointment with Dr. J! Elizabeth

Nevergiveup: We had a very similar experience when we were doing the monthly low dose IVIG's! We saw an immediate relief and then a worsening of symptoms. We went from IVIG's every 28 days to IVIG's every 21 days. We finally did the higher dose (1.5) on February 4th and have not done another IVIG since. The higher dose was sooo much more effective than the lower dose and the longer we waited after the higher dose, the better things became. Granted, our son also has lyme disease (which we did not know) and we began the multiple antibiotic regime 6 weeks after the high dose IVIG. So, I guess I am wondering if your doctor would allow you to do the higher dose IVIG and possibly wait the Dr. K protocol of 12 weeks in between? What are you thoughts on this? Elizabeth

I know that many of these doctors are considering the mycoplasma IGG positive only as a negative mycoplasma, but there are several articles describing how a repeated or chroni mycoplasma infection may not create a rise in the IGM levels. Our LLMD strongly feels that mycoplasma can mimic lyme disease on its own and that it should be treated aggressively with two antibiotics at once for up to 4 months. He is currently treating another PANDAS child for mycoplasma and staph with azithromycin and bactrim. What were your son's IGENEX results as the 7 week mark? I would also test for the lyme coinfections. Elizabeth

My son had this all over his entire body when he was at his most severe, PANDAS wise. I felt like it was some sort of autoimmune issue with the melatonin in this skiin. Since then, both of my kids have had the white spots on their faces only. It looks as if they just put sunscreen on one big area of their cheeks because they will get a suntan everywhere else. Interesting.......

Hi cobbie: The thryoid, vitamin D and Iron/ferritin levels would be good tests. The MOST important tests would be the coinfections, including mycoplasma, bartonella, babesia, erhlichia, etc..... Again, most LLMD today consider a positive IGG IGENEX test to indicate a positive lyme test. My daughter was negative for IGM and positive for IGG and she has done just amazing with the lyme treatment and she has never had an IVIG. Her TICs went away within months and her other symptoms have been slowly going away during the 6 month treatment she has been on so far. So, I would DEFINITELY consider a positive IGG as positive lyme. Some just believe that these people may have had the infection longer. Elizabeth

Great article....... Thank you so much for sharing. Elizabeth

I disagree!!!! Lyme can be one of the microbes that can cause PITANDS symptoms. My son initially only had PANDAS symptoms with strep throat and then we found out that he had lyme disease. I believe that lyme, mycoplasma, bartonella and or strep can cause PANDAS or PITANDS. Just because is your initial trigger, it does not mean that there is not an additional underlying infection. I have to say that many families are not doing well with the typical PANDAS treatment and finding out what else could be causing these PANDAS symptoms and having an additional treatment option can save the lives of many children and their families. It has saved our family when we were in despair! So, in my mind these are not separate illnesses and lyme is JUST one other microbe that can create OCD and TICs and basically PANDAS symptoms. Why are we having such a hard time with this topic? I have to say that I finally have my son back and I only have this forum and its information on PANDAS and then lyme disease to thank. So lets keep up the great debates so that many other children can be helped, whether it be that they discover lyme disease, or strep only, or mycoplasma. Elizabeth

I have also learned from Pmom's visit to Cunninham's office that lyme can product high Cam Kinase. And elevated immune complexes are quite common with lyme disease. So, I believe that yes, lyme and/or PANDAS can look the same in terms of blood work. But I believe the lyme is just one of the microbes causing PITANDS. elizabeth

Our son initially had only symptoms with strep and when we treated the strep, his symptoms would go away. Then there came a point when he was just in a constant exasperation without relief. I DO NOT think that everyone has lyme, but I think that for us, the lyme was preventing our son from completely healing. I think that many microbes can result in PANDAS or PITANDAS. Some kids may just have strep as their only issue, but other children may have mycoplasma as their issue and then some may have lyme as their issue. And then there are many children who may have multiple infections. One of my thoughts as to why Dr. K often refers to difficulty in treating PANDAS after the age of 10 is that the older child has a higher possibility of having multiple infections that are harder to eradicate with just IVIG and one antibiotic. I am guessing these multiple infection triggers that can create "PANDAS" symptoms are what is leading to the name change from PANDAS to a broader spectrum of bacterias/viruses that can lead to the same symptoms. Elizabeth

I am sorry that your son has lyme, but I think this is fixable and the lyme treatment will be so very helpful. I personally do not think that lyme and PANDAS are separate, but that lyme is one of the microbes that can create a psychiatric response. Our son had lyme and we never knew it and he had every single PANDAS symptom. So, I think that for him... he was fighting lyme and babesia so hard that he could not handle the strep and whenever he got strep, he had an exasperation PANDAS wise. There are some great lyme doctors in the Northeast. You may want to make an appointment with a few of them and see who you can get into first. I would also PM lymemom about doctors. Elizabeth

I know of another PANDAS child, who is currently getting IVIG with Dr. K, who went to our LLMD 2 weeks ago and was given multiple antibiotics (azithromycin and bactrim) to treat mycoplasma. The MD said that the two antibiotics together should take between 2 to 4 months to eradicate the myco. elizabeth

I believe that there is a chance that there may be another issue if the IVIG did not work. We had 2 hdIVIG's and 4 or 5 small dose IVIG's and my feelings are that if we were not getting to at least 80 to 90% and staying there then there is still a chronic issue that we were dealing with.... We did do the lyme and coinfection testing in both of my children. My son did have lyme disease, mycoplasma, bartonella and babesia and strep. We decided to stop the IVIG's because I believe that were creating too much herxing and our son was not doing as well. Since we stopped IVIG's 7 months ago and started treating all of the microbes, our son in now in the 90% range. So, my advice to you is that if you did not see great success or sustained success with the one IVIG, then I would test a little further to see if there are some additional infections that your son may be dealing with. My fear is that some of these kids (like my son) may see a temporary success with the IVIG, but it will not last unless the underlying infection is eradicated. Oh, and I just wanted to add that a positive IGG mycoplasma and negative IGM mycoplasma can still do quite a bit of damage and does not definitely mean that the child is not fighting mycoplasma. These are my latest views and they are subject to change as they are continually evolving! Elizabeth

Mandy: I am so sorry for the pain you have gone through. The chest spasms and the fact that she stops breathing sounds so scary. I am happy though that she was able to attend school for the first time in a long time. My son will be restarting school again this fall after being out for a year. Good luck with the IVIG next week. Elizabeth

Melinda: Depending on the coinfections, each doctor may prescribe differently. Both of my children started on the azithromycin/omnicef combo, which is supposed to be good for lyme and bartonella and mycoplasma. So, they were each on 250 of azith and 600 of omnicef. Our doctor also incorporates the nutramatrix herbs for lyme into his regime and homeopathy for detox. Now, my daughter is dealing with the babesia with Mepron and my son is dealing with the cyst form of lyme with Tindamax. Elizabeth

I would take the them to a lyme literate doctor. Many lyme doctors consider a positive on any other band, other than 41, to be a possible positive even if the overall test says negative. With IGENEX, you would consider either a positive IGG or IGM to be positive. My daughter was positive for IGG and not IGM and she has done amazing with the lyme treatment. Elizabeth

Hi Jodie: Low vitamin and low Ferritin and be a result of a chronic infection. My son had low Ferritin as well and we did do the iron supplementation for a while. Our current doctor is treating my son for all of the microbes (lyme, bartonella, babesia and mycoplasma) and said that once we deal with ridding the body of the infections, then the body will work more efficiently and we should see an increase in the Ferritin and Vitamin D levels. I will let you know when we draw blood next. Elizabeth