KeithandElizabeth

Initially, our son only had issues with strep. Eventually, every single bug, physical injury and even emotional trauma would create a huge response. At his sickest, our son never became physically ill with anything and just responded with "PANDAS" symptoms to everything our daughter brought into the house.

I really wish we had further explored the concept of chronic infections in more depth before we did all of the IVIG's on our son. I do think that lyme and mycoplasma are extremely sneaky bacteria, both lacking a cell wall, and need to be fully eradicated. And the treatment plan for these bacterias is often a combo of multiple antibiotics, which is less invasive than IVIG and/or PEX. So, my advice would be to see an LLMD for a consultation about the possibility of your son having a chronic infection. Today, a friend and I discussed the forum debate with our lyme doctor and he brought up the topic of MS and how MS is thought to be this autoimmune disease, but once several of his and other MD's MS patients are treated for their chronic infections, their lesions on their MRI's go away. So, he theorized that the lesions were actually from all of the inflammation.. Now that I am finding out that our children had multiple infections and now that we are treating each infection and seeing wonderful progress, I would advice to try this road for a little while. You can always go back to IVIG. I would find a really good lyme literate doctor and please note that there are other great labs that can help with lyme, mycoplasma and coinfection testing. Most good doctors combine all of the labs anyway and pick and choose different labs for different infections. Just my two cents. Elizabeth

We are in Colorado as well and I will PM you some great doctors! Elizabeth

My daughter is currently off antibiotics right now and we will be using natural antibiotics for the next 6 months until we feel like her immune system is stronger. As a side note, she was on aggressive antibiotics for lyme, mycoplasma, strep and babesia for the last 10 months and for 6 weeks of this time, she was on 3 antibiotics at once. So, my daughter weighs 75 pounds and she is now on olive leaf extract, grapefruit seed extract, meso silver and noni as natural antibiotics. The meso silver is very controversial and we only plan on using it for a couple of months. The noni is supposed to be a great herbal supplement that is also an antimicrobial and we are using it as a prevention for mycoplasma. Hope this helps. There are many other natural antibiotics out there that can be just as beneficial. Elizabeth

Our almost 12 year old daughter had the 179 Cam Kinase and 3 out of 4 very elevated anti-neuronal titers. She is the one done with lyme treatment after 10 months of treatment and she never had an IVIG. I have not redone the Cunningham titers, but may redo them in the summer. Their office said to wait as long as possible after completion of treatment. Our son is still struggling with babesia and he had many IVIG's (last one was 11 months ago). I am wondering, just thinking aloud here, if perhaps the high dose IVIG's suppressed his immune system and thus making it more difficult in the long term to fight the lyme and coinfections. So, maybe the high dose IVIG's help some in the short term, but since they are ultimately suppressing the immune system, the body has more difficulty in the long term. Who knows??? I am just questioning why he has had a more difficult time fighting the lyme. Again, my kids did have strep issues on top of the lyme and mycoplasma issues. Dr. Cunningham said that both strep and lyme can create an elevated Cam Kinase. So, I do not look at this as my kids did not have PANDAS and that they had lyme instead, but rather that my kids had a neurological/psychological and perhaps autoimmune response to many chronic infections. My hope is that in absence of all infections, their immune systems become stronger and they are better able to handle strep in the future. Scary to think about this since my daughter is now off antibiotics. I will update when she does deal with mycoplasma and/or strep again. Elizabeth

dcmom: OCD was our son's most debilitating symptom, although he did have tics as well. And yes, lyme treatment has helped tremendously with the OCD. As many other mothers have posted, the journey can be bumpy, but the overall trend is upward. Our son is ranging from 88% to 96% better and he has been on antibiotics for 16 months, although he has only been on a specific lyme treatment for 10 months. The multiple antibiotic regime was vital as well as a cyst bursting drug, like Tindamax. Finding and treating the coinfections is also important for complete success. I will PM you about a couple of doctors in your area. Elizabeth

I really feel your pain in dealing with this illness for so long and I understand how this forum has jumped from one issue to another. I have two sick children with "PANDAS." Our son became completely debilitated with this illness and I tested and jumped on every bandwagon in an effort to help our son who could no longer leave the house or have anyone come into our house and who was hallucinating, urinating every 2 minutes, scared of sink knobs, etc..... So, when we were discussing strep, we tested and he was positive. When the forum started talking about mycoplasma, I had one of the IVIG nurses test for myco and he was positive (even after 5 IVIG's). And then when lyme was mentioned, we tested for lyme and were positive. I knew something had to be wrong when a child is on antibiotics and doing multiple IVIG's and still getting strep. Again, IGENEX simply includes more lyme bands to test for since the CDC stopped testing for bands 31 and 34 once the lyme vaccination was due to come out. My daughter never had an IVIG (only my son did) and she healed quickly from lyme treatment. She is currently off all antibiotics and is doing well. I would rate her at 95%. Our doctor feels that her remaining 5% of recovery is due to a recent mycoplasma infection as well as the remaining toxins in her system. I have canceled her IVIG, which I had rescheduled 6 times waiting to be done with lyme treatment because I was still so stuck on PANDAS. I now think that in absence of a chronic infection, many autoimmune illnesses will resolve. Dr. Shoemaker has written some papers about this topic. My son had 4-5 low dose IVIG's and then 2 high dose IVIG's. We quit doing the IVIG's last February (11 months ago) and then we began lyme treatment. The combination of two antibiotics was more helpful than the IVIG's. He is doing so much better, but is really having a hard time getting rid of babesia, which is a parasite that lives in your red blood cells and is one of the more difficult lyme coinfections to eradicate. I would rate him between 88% to 96% better, depending on the day. So, this is our story and I hope it can help. I do think that mycoplasma can cause neuropsychological issues because, like lyme, it lacks a cell wall and can become chronic. I think we would all be surprised at the combination of infections that can manifest mentally versus physically. But, I guess I just don't want anyone to give up if IVIG and/or PEX do not work. Elizabeth

We are another example of a family where hdIVIG was not bringing sustained results and then we further explored lyme disease. My daughter was positive on the lyme specific bands that were omitted from the CDC test, specifically band 31 and band 34. Our LLMD feels that labels, such as PANDAS, MS Lupus, often prevent people from seeking the possible true culprit to one's problems. We now feel that the lyme, strep, babesia, bartonella and mycoplasma were all bacteria and parasites that were triggering the neuropsychiatric symptoms versus that our children have two distinct illnesses, PANDAS and Lyme. As we get rid of each bacteria/parasite, our children seem to become stronger and stronger and their "PANDAS" symptoms decrease. My husband and I were not positive on the IGENEX tests and I know of many other people who had negative IGENEX tests. My heart went out to you when you posted yesterday. I can only imagine what you have gone through during these last 12 years. My suggestion would be to find a great LLMD, who can test for a multitude of possible infections that may be contributing to your neuropsychiatric issues. I wish someone had told me to do that for my children at the beginning of our journey. Both of my children had high CamKinase and my daughter (who had the least amount of symptoms) had extremely high anti-neuronal titers. Elizabeth

What wonderful news!!! I am so happy for you and your whole family. We, as families, are so often are on this forum looking for help and then not everyone comes back to post the positive updates. So thank you so much for sharing! Elizabeth

Fixit: This test, from what I have read, is supposed to be very accurate. I think the most important thing is to find a good LLMD who can assess and treat potential coinfections. The herxing can be rough at times, but most people find that their children get stronger and stronger every month and begin to respond less and less to other illnesses as they heal. I think Susan's suggestion about taking notes during the journey is a great idea. Whenever I was feeling like our son was not doing well, I would look at our calender and note that overall, his monthly percentages of progression were getting higher and higher. After 6 IVIG's during the beginning of our "PANDAS" journey, our son kept relapsing and as time goes on now with lyme treatment, his relapses are less intense and his good days just get better and better (knock on wood.) I have found the multiple antibiotics used in lyme treatment to be less invasive, less expensive and less traumatic than IVIG (or PEX). We will be here for you. Elizabeth

Quinny: I am so sorry for your pain. Have you ruled out chronic infections, such as lyme disease, bartonella and mycoplasma? We have found that multiple IVIG's did not bring a complete cure for our son, but the right combination of multiple antibiotics has been a miracle. Our son did end up having lyme disease, bartonella, mycoplasma and babesia. He had only neurological/psychological (PANDAS/PITANDS) symptoms so I was really leary of him having lyme disease, but finding the infections has done wonders for him. I would recommend using IGENEX for the lyme testing because IGENEX includes many more lyme specific bands in their tests. If you are not as familiar with lyme, you may want to check out the lyme forum on this board. Elizabeth

dcmom: I am so sorry to hear about your daughter! Have you checked for other chronic infections? We have never used a long term steroid burst so I cannot give you any advice on this, but my thoughts are with you! Elizabeth

Kelly: I think this debate can be healthy and again, for the record, I do not think this is all Lyme. I guess I do not understand your ill will towards lyme and lyme testing. And I suppose I do not understand your thoughts on the coinfections. Do you feel that the positive coinfections are erroneous as well? I am just curious because Babesia, a parasitic coinfection, has been so hard for our son to erradicate. I do not see the harm in testing and treating for lyme. Usually, the treatment is a combination of antibiotics, versus just one antibiotic. And I do wish I had tested for lyme before doing 6 IVIG's. I do not feel that lyme testing and lyme treatment is really that invasive and so I do not understand the negative emotion towards lyme. Our LLMD has helped us tremendously. I feel that he has literally saved my son and our family. When IVIG's and PEX are not working for many of these children, what do you suggest they do? My son would be in a horrible place right now if it were not for the lyme treatment, including the cyst busters and the babesia treatment. So, all that I feel is that we, as parents, should check for all of the possible bacterias for PANDAS and PITANDS, including lyme and mycoplasma and strep. I guess that I do not fully understand your viewpoint against lyme testing and I am open to discussing this further. For the record, our LLMD has seen so many of my friends who have children with OCD or transient TICs, etc...... and he has only found lyme in our family and one other family who came from CT and already had a positive lyme test with Dr. B. So, he is definitely not biased towards lyme per se. But he has found other infections in all of the children who have had OCD, hallucinations or TICs. Again, I am so happy that your children do not have lyme because it is one of the tricky bacterias to deal with and I am really happy that your children are both doing well because we all want each and every child on this forum to do well. Elizabeth

Kelly: Yeah! Great news! I think that the fact that they are not responding to other illnesses is wonderful. Thanks for sharing and enjoy the holidays! Elizabeth

Both of my children have PANDAS resulting from lyme and strep and bartonella. My son had horrific handwriting and this is one of the reasons his teacher was very concerned that something was wrong.... On the other hand, my daughter never had an issue with her handwriting. So, I think that each kid is different and in this PANDAS journey, you should rule out all possible bacterias and parasites and viruses. Elizabeth

MMC: I just wanted to add that, initially, our son only had PANDAS symptoms with strep. Every time we treated the strep, he would get better. Eventually, though, he did not improve once we treated the strep and we began IVIG. Again, initially, IVIG did wonders and then after 6 IVIG's, he regressed again. After a long journey, we found the lyme, bartonella, mycoplasma and babesia. This bacterias and viruses were preventing a complete cure for our son and also preventing him from dealing with the strep appropriately. Our children never had a known Tick bite, but treating each infection has done wonders for both of our children. A good LLMD can help with all of these coinfecions and they are also experts in strep. Elizabeth

I also agree that debate can be a very healthy way to learn and that everything is not always so black and white. I do want to add that the positive Erhlichia, in my humble opinion, is not as debatable and can be very serious if ignored. On that note, both of my children had babesia and mycoplasma and one had bartonella. The babesia, which is a parasitic infection, can also be VERY serious and is not usually treatable with antibiotics, but rather with an anti-malaria drug. It has been our most challenging infection to eradicate! So, I guess I am saying that taking the lyme debate aside, these coinfections are extremely important to treat and false positives with coinfections are unusual! Elizabeth

Hi Worried Dad: Well, you definitely have a positive Erlichia test and this is usually seen with lyme disease. Again, band 31 on the IGM usually represents an older lyme infection. I also think the lyme explains your son's difficulties in eradicating strep, although there are many different opinions about this topic. I agree with the previous posts in terms of finding a good ILADs LLMD. As momofgirls mentions, long term antibiotics usually force lyme into cyst form and you may even see a relief of symptoms once lyme is in cyst form, but a future infection or trauma can bring the lyme out of cyst form. Lyme can remain in cyst form for years! Hence, the incorporation of a cyst bursting drug, like Tindamax or Flagy, is critical in lyme treatment. I agree with SF Mom in that once you treat a possible lyme infection as well as all of the coinfections, you will no longer be as fearful of strep. (Of course, I have not reached this point yet!) I was so scared when we first figured out the lyme component, but eventually I have found comfort in knowing the source of our children's issues. Many families are finding that lyme and/or mycoplasma is an underlying issue to their strep problems. My thoughts are with you during this very confusing time. This is a journey, but this is curable!!!

Cobbie: This is such great news!!! Your son was fighting soooo many different bacterias and viruses and it looks like his body is doing a good job! Thanks for sharing such a positive update!!! Elizabeth

Hi Dawn: I still remember the night when you posted all of your ASO/ ANTI- DNASE B titers. I was packing to go on a family trip and I was so flustered for you about your ASO titers that I just kept walking in circles around the suitcase. Well, now I think you have your answer and I think that you will be amazed at the recovery of your whole family once you start treating for lyme and its coinfections. Elizabeth

I think it is a great idea to do the 31 epitope confirmation test for lyme. My biggest piece of advice would be to hold off on any steroids in case your daughter does have lyme disease. Although the steroids may provide short term relief, they are suppressing the immune system which can let the lyme grow rapidly and thereby causing a longer term lyme issue. I would not be afraid of the herx from the azithromycin because the herx in itself is evidence of lyme disease and shows that it is starting to kill off the bad bacterias. Elizabeth

I found this to be an interesting article on autoimmune disease. http://www.gethealthyagain.com/autoimmune.html I thought there were many interesting points to discuss in this article, but did want to point out the following warning about using steroids with autoimmune disease: "As you can see, balancing the immune system so that it works the way it is supposed to is a fundamental need when you have an autoimmune condition. When a doctor gives a person suffering from an autoimmune disease prednisone or another steroid, which most do, they are trying to turn off the immune system. Unfortunately, the success rate is low because they are using a poor tool. Because steroids don’t just turn down the Th-2 side, but they also wipe out the Th-1 side. This side needs to be boosted, not depressed. For unless it can be brought up to normal, it will allow the Th-2 side to overactivate. Both sides are always in a balance. If one is too low, the other will naturally be too high. Like a teeter-totter."

Elijomom: A good well known LLMD will look at ALL infections because each infection is targeted with different antibiotics. For instance, our LLMD has seen 6 kids with 'PANDAS" symptoms and only 3 had lyme disease and he diagnosed the other three with mycoplasma plus strep or mycoplasma along with a virus. Mycoplasma is second to lyme in terms of the fact that it lacks a cell wall and can be stealthy. i think it is critical to fully rule out lyme disease before proceeding with the typical PANDAS treatment. Elizabeth

My advice would be to see a highly regarded LLMD! Many LLMD's consider a positive IGM 31 band to be a LONG TERM lyme infection! Some of the sickest kids have low positives results for many reasons. One reason is that they may have elevated immune complexes binding the lyme antibodies creating a false negative test. Another reason for a negative test is that lyme does not hang out in the blood. It burrows into the organs and tissues and until you begin to treat for lyme, you may not have a strong positive test. On top of band 31 being lyme specific, band 83-93 is also lyme specific. It is so important to also test properly for coinfections. My opinion is that these test results strongly indicate lyme disease. Elizabeth

Some of the top LLMD's say that a positive 31 band on the IGM may suggest a long term lyme infection. We have seen far better and longer term results with lyme treamtent, especially in comparison with traditional "PANDAS" treatment. Again, the journey can be very bumpy (two steps forward and one step back). I was just relieved to find a reason as to why IVIG's along with antibiotics were not bringing us sustained relief. The key now is finding a really good LLMD who incorporates detox principles and tests appropriately for coinfections. I think that a lyme diagnosis is scary, but children are known for having complete cures. Elizabeth