KeithandElizabeth

Hello: Both of my children had elevated Cam K levels and they are both positive for lyme. DD 11 had a CAM K of 179 DS 8 had a CAM K of 142 (2 weeks post steroid burst) Interestingly, it does not appear to me that the severity in symptoms correlate with the level of CAM K. My daughter with the 179 level was mild, in terms of PANDAS symptoms, compared to our son. And our son had also reached the point of having SC symptoms. Again, he had had a steroid burst prior to testing.

Oh, I am so sorry! I had been thinking of you recently and noticed you were not posting much and I was hoping that that meant good news. You will probably know by now that I really think another infection can possibly make it difficult for your son to deal with the strep. In this scenario, I would: test the whole family for strep check your son for mycoplasma and even consider a high IGG and neg IGM to be positive Check for lyme and coinfections via IGENEX Check for C3d, circulating immune complexes (high levels can possibly create a false negative lyme test) Again, I am sorry and I will be thinking of you all! Elizabeth

Thanks Pacific Mom: I just looked up our local support group through your link and emailed them. Elizabeth

Hello: You may want to contact ILADS for a list of doctors close to you. Another blood test to consider on top of the IGENEX is the mycoplasma and the C3d, circulating immune complexes. Some people, who have elevated circulating immune complexes may have false negative IGENEX tests because the IGG's are hiding out in the complexes. These additional blood tests should help with the big picture. Elizabeth

Hello: Getting worse initially on antibiotics can definitely be a herxheimer reaction: http://en.wikipedia.org/wiki/Herxheimer_reaction I would recommend doing the IGENEX lyme and coinfections tests as well as checking for mycoplasma. Keep us updated. Elizabeth

Joan: Have you done the IGENEX test on your son yet? Have you done the c3d circulating immune complexes test? I am so very sorry for your pain and I felt like I lived in constant pain last winter trying to find the missing link as well. For us, it was the lyme, mycoplasma, bartonella and babesia. Anyone one one these infections can create a systemic infection in your child's body and cause these "PANDAS" symptoms. I urge you to test for all of these infections. My thoughts are with you right now! Elizabeth

YES!!! My son definitely had many moments of these "out of body" experiences. He would say "how did we all get here?" and "Am I real or am I dreaming right now?" And on and on...... The whole thing is just sooo very frightening! Things should get better as treatment progresses! Elizabeth

Thanks for the update! Did he ever mention anything about bicillin shots to you? I have heard that he has had success with doing these shots with his PANDAS patients? Elizabeth

Dawn: You are funny! My son will not drink the bentonite clay ( I have always been envious of the fact that Wendy's son will drink it right down) and we therefore use charcoal pills instead. They are supposed to work in a very similar fashion of binding the toxins and taking them out via the colon. After our meeting with our nutritionist today, we are doing 6 charcoal pills every night now followed by 6 (50 billion unit) capsules of probiotics. Elizabeth

What a great question. I know that Dr. Cunningham is discovering that many families have had positive lyme tests so I would assume that she is aware of this. I am thinking of redoing my daughter's (positive for strep, mycoplasma, lyme and babesia) Cunningham test (179 Cam K and 3 out of 4 anti-neuronal levels VERY high) to see if they have gone down dramatically with lyme treatment and without an IVIG. What a great question though because, depending on the microbes, different antibiotics would be needed and I think that IVIG will not be as successful for the kids who do have lyme disease. Elizabeth

I would definitely recommend making an appointment with an LLMD now because they are booking so far out in advance and you can always cancel the appointment. Dr. Horowitz is in New York City and is supposed to be fantastic. Elizabeth

Hi SF Mom: Thank you so much for the update. As you know, our story is very similar and I do think that it is soooo important to check for lyme and mycoplasma at the beginning of this PANDAS journey. Like your son, our son did fantastic with the first hdIVIG!! I thought all of our problems had been solved. After our son relapsed and could not reach 100% after 6 IVIG's, we also discovered that our children had many bacterial infections (including lyme) that were creating the PANDAS symptoms. Again, please keep us updated because I do strongly feel that lyme is just one of the triggers for PANDAS symptoms. Thanks, Elizabeth

Stephanie: Great information. Thanks! Do you know anything about mesosilver as an antibiotic? Our nutritionist loves it and says that is is very potent. What are your thoughts on this? Elizabeth

Unfortunately, since this forum is so new, there are only a couple of families ahead of us whose children have lyme disease with symptoms which manifest in "PANDAS/PITANDS" behaviors. We are 7 months into lyme treatment and treating the lyme is resolving the "PANDAS" symptoms. I do worry about the next time one of my children get strep once we are done with the lyme treatment. I have noticed on other websites and blogs that many children with lyme disease have PITANDS symptoms, however these families are perhaps unaware of the PANDAS/PITANDS diagnosis and they are simply focused on lyme. It seems that the PITANDS symptoms do go away once the lyme was treated. I often wonder if these families also had strep issues that they were unaware of or if the lyme and its coinfections were the only triggers for the OCD/TICs. I am guessing that several of these microbes can create the same symptoms. Elizabeth

P.Mom: Our doctor does ART muscle testing in conjunction with blood testing in order to give his patients additional tools in diagnosing and treating bacterial illnesses. Following is a description of the ART muscle testing. http://www.neuraltherapy.com/art.htm Elizabeth

Pmom and Fixit: I am constantly wondering what bacteria came first with my children (strep versus mycoplasma versus lyme, etc..... I suspect that the scenario may be different for each child. And for some children, perhaps, strep may be the only issue. My daughter initially had a positive IGENEX lyme test in March, after being on just azithromycin for 2 months. Based on symptoms and ART muscle testing, the doctor no longer thinks she has the lyme, but that she is still fighting the babesia. We have not done a follow up IGENEX test to confirm. She was on one antibiotic for 2 months and then multiple antibiotics for the following 7 months and now is she on Mepron and azithromycin. Currently, she seems to have very mild issues... mainly mood lability every 2 weeks. She also has had issues with anxiety in terms of needing to be close to us in the evenings. Interestingly, she had an eye blinking tic at the age of 18 months and then developed facial/vocal tics again at the age of 11 when she had strep in January. The tics were the first to go when we started multiple antibiotics in March. The mood lability seems to be the last of her symptoms to leave us..... Our son, however, seems to still have lyme and babesia, but he is doing very well. He once had EVERY single symptom on Dr. K's website and could not leave the house or go to school.. We felt like we had just lost him. Now he is doing great and is having play dates and is back in school part time. In terms of current symptoms, he will have "PANDAS" moments that last only a few hours a couple of times a week. They can be brought on by a cold or an emotional trigger or just plain exhaustion. On a side note, in terms of our son, he really jumped in his healing process when we added the Mepron to treat the babesia and then when we added the Tindamax to treat the cyst form of lyme. In terms of our friend's family with the mycoplasma issue, our LLMD believes that they never really cleared the mycoplasma completely. Mycoplasma seems to be much easier to eradicate than lyme disease, but it is also a sneaky infection that is related to many illnesses. Following is an interesting mycoplasma article: http://www.drgregemerson.com/fact-file/mycoplasma Elizabeth

I do think that the combination of two antibiotics can take care of the strep, even if you have another infection. Our personal experience though has been that we had to get rid of all of the infections in order to get to 100% (and we are not 100% yet). Our daughter no longer has lyme, but she still has babesia and this parasite is stealthy in and of itself and she will still sometimes have mild issues from just the babesia. So, I would say try to attack all of the infections and some, like babesia, need a different drug because antibiotics do not work with babesia. Another infection that is causing so many issues for so many families is mycoplasma. I have a friend whose children have mycoplasma issues (negative for lyme) and whenever they get strep, they tic. She is now doing a longer course treatment for the mycoplasma in hopes that this will enable her children to fight strep appropriately. Elizabeth

From what I have learned, I believe the lyme could be what is prohibiting the body from dealing with the strep and this may be why your son still has high strep titers while still on antibiotics. My son had elevated strep post 4 IVIG's and while being on the prophylactic dose of Augmentin. HIs strep titers went down only after we began treating the lyme with multiple antibiotics. Elizabeth

Hi Dawn: I am glad you found a good doctor to help your son. I just want to give you some hope.... when we started to treat the lyme, bartonella and babesia with our children, their PANDAS symptoms slowly went away when the typical PANDAS treatment of IVIG and one antibiotic did not do the complete trick and our son kept relapsing. The road can be bumpy, especially the first few months, but we are amazed at how successful the treatment has been for both of our children. Elizabeth

I am sorry about the lyme! I am happy that you found out before you did the PEX though. We found out our daughter had lyme two days before her first scheduled IVIG and we canceled the IVIG and have been treating the lyme now for almost 7 months. On the other hand, our son had had 6 or 7 IVIG's and then we found out about his lyme. Based on our personal experience, I would have waited on the intensive (IVIG or PEX) treatments until I had really treated the infection for a long while. I don't think the IVIG's sped the recovery time of lyme in any way compared to our daughter. I think the most important thing is to find a REALLY good lyme doctor. I believe you are in Virginia and I am thinking that maybe Dr. Beals is close to you? It is harder to find lyme doctors in the mid/southeast. The herxing can be intense initially, but this forum should be a great resource for you in terms of treatment and detox. Elizabeth

Gosh, i am really driving myself crazy with these same thoughts right now. My 11 year daughter had a 179 Cam K and very high anti-neuronal levels (dopamine 1 was 4 times the normal level) and she failed 13 out of 14 S. Pneumo titers and her IGG's levels were barely normal. We have been treating her for lyme disease, mycoplasma and babesia (the strep went away immediately) and she is doing great!!!!! Depending on the day, she is about 93% better, but she still has babesia. She has a scheduled IVIG in 2 1/12 weeks and I am about to reschedule it for the fifth time because I am so on the fence. After doing 2 hdIVIG's and 4 or 5 small dose IVIG's with our son, we are not convinced that IVIG is the answer if lyme is the main issue. Both of our children had strep issues, but they also have other microbes so I am thinking that I will maybe redo the Cunningham and S. Pneumo titers and then go from there..... In the back of my mind though, I am so worried that I may make the wrong decision. Anyway, to answer your question, I do think that lyme can cause molecular mimicry. Elizabeth

So, our doctor uses Tindamax instead of Flagyl and he uses the Tindamax for the cyst form of lyme. They are supposed to be very similar drugs. We discovered that whenever we added a new drug, we would see herxes. My daughter had very severe mood issues with her herxing and it was hard for the entire family. We noticed that the first month was just almost constantly rough, but we could do some things to help such as the bentonite and epsom salt baths, etc.... Then the second month, we would have more good days each week, etc.... Around month 5, we would have one bad day every two weeks. So, as time went on, the herxing issues became less intense. It is a hard journey trying to figure out the right antibiotics and what is a herx and what is not! Elizabeth

I am so sorry! The pain with this illness is still so incredible to me. We had a really rough time with monthly IVIG's, but I know every case is so different. Have you ever thought of doing the high dose IVIG's every 12 weeks instead? Elizabeth

Hello: Momofgirls, from the forum, sent me this article last night and I thought it was a great article explaining why the IGG levels in Mycoplasma are important even if the IGM levels are negative and how the IGM levels may not rise with recurrent infections. http://www.mycoplasmapneumonia.net/immune-response-to-mycoplasma-pneumoniae/ Good research Kim! Elizabeth

It appears that there many viruses/bacterias and parasites can create a "flare" with lyme/PANDAS and also challenge the healing process. Have you checked for all of the lyme coinfections yet? My daughter is still fighting the coinfection babesia and this parasite has been really difficult to eradicate from her body. I know that if you browse through lymenet, you will see that many people with lyme also discuss the EBV quite a bit. The XMRV virus has just been discussed recently as well since it has been in the news in its relation to chronic fatigue. If you google Dr. Burrascano and XMRV, you will find that he has found a strong correlation between lyme and XMRV. Elizabeth