KeithandElizabeth

I just want to ditto momofgirls. If IVIG and/or steroids are not bringing the desired results, I would suggest digging further into the possibility of a chronic infection. The first IVIG brought us a 95% improvement, but it did not last and we never saw such improvements again in our future IVIG's. We finally discovered multiple chronic infections, including lyme, bartonella, babesia, mycoplasma as well as parasites. High dose IVIG's are immune suppressive and many people will therefore have false negative IGG and IGM tests for mycoplasma, bartonella, lyme, etc..... after doing a high dose IVIG. Many of the tests for the coinfections to lyme disease only test a couple of bands of the infection and there are, therefore, many false negatives. For instance, the babesia test only tests for 2 out of the 17+ strains of babesia. I know that the chronic infection issue is a hot topic on this forum. I just want to give you hope in that this may be a possibility as to why your child is not getting the desired results with IVIG. I would recommend following up with an ILADs trained LLMD to further dig into the indeterminate lyme bands as well as the potential of other chronic infections.

I think that this is great news because our experience has been that lyme treatment has been key to our healing process when multiple IVIG's were not maintaining a sustained benefit. We even quit the IVIG's in order to give the body a chance to fight lyme on its own and to avoid suppressing the immune system. I think that Dr. K recommends getting rid of all chronic infections before doing high dose IVIG's. I highly recommend a skilled LLMD because, as you know, lyme often comes with multiple coinfections that are difficult to detect and difficult to treat. I hope that the multiple antibiotic combo gives your daughter some relief. We did see herxing, in terms of increased PANDAS symptoms, when adding in new antibiotics.

We were also at a crossroads when 6 IVIGs did not bring us sustained success. Have you considered looking at other infections? LLM gives a great summary of a variety of bloodwork that you can run to see if there is a possibility that chronic infection is an issue with your son. After all of the IVIG's and a year and a half of constant antibiotics, we found that our son still had mycoplasma, bartonella, lyme disease and babesia. He is sooooo much better now that we are treating all of the infections. PM me if you have any questions. Elizabeth

I am so sorry you are going through this awful painful experience right now. My immediate "brainstorm" thought for you while you are waiting on testing and the possibility of PEX/HD IVIG is to talk to your doctor about the possibility of incorporating two antibiotics into your regime at this point in time. There have been several families who have discovered long term chronic infections such as mycoplasma, bartonella and/or lyme that often require two antibiotics at once. Another thought is to consider treatment for viruses as you wait. Viruses have also been an issue for our family and I was reading the Texas symposium notes from TPotter and noticed that many doctors touched upon the topic of viruses as major issues for PANDAS, MS, Lupus, etc...... The families on this forum have been though so much pain and can support you with their experiences and what they have learned! We are here for you! Elizabeth

We were one of the families that were not getting a sustained benefit from IVIG and steroids. All I can say is that I have know idea where we would have ended up if there were not other options to consider. I think that most of the infections, including strep and staph, can be addressed with 1 or so years of antibiotics, but the scary thing about lyme is that it is not easily treated with one antibiotic and the scarier thing is that my children both had the Lyme coinfection, Babesia, which is only really treated with an Anti Malaria drug. I am so very thankful for this forum and for the experiences of other parents because both of my children have seen such vast improvements with lyme treatment. I have never really understood this debate. I think we all agree that it is important to get rid of strep and I think it is just as important to treat the lyme. We have been treating ALL of our infections!

You are at a difficult crossroad right now and all anyone on this forum can do is to offer you advice based on their experiences and you can take bits of this advice and apply it to your situation and throw out the rest. On that note, this is our experience: We chose to treat PANDAS aggressively with 6 IVIG's with our son and the first IVIG brought miracles and then we never saw the same gains with the rest of the IVIG's. We were at a complete loss until Lyme mom started posting and even though her posts scared me to death and I thought lyme did not apply to us since we do not live in a lyme area and all of our sons symptoms seemed to be related to chronic strep, we eventually tested both kids and discovered lyme underneath everything. The lyme treatment took a good year of severe bumps, but both kids are stronger than ever today! I know Dr. K does not test and treat for lyme, but he did tell me that before doing an IVIG on our daughter, we must treat for lyme first because high dose IVIGs are really immune suppressing and the IVIGs will not be as effective if there is a chronic long term infection. We never ended up having to do an IVIG on our daughter and quickly quit the high dose IVIGs on our son since you ultimately do not want to suppress the body if there is an infection. I do think that there are many other infections, without lyme, that can create PANDAS symptoms and I would check for mycoplasma and bartonella along with strep to make sure that you get rid of all infections before going on to steroids and IVIG/PEX. So, this has just been OUR experience and I know that everyone on this forum has different experiences to share. I believe that the more other people share their experiences without judgement of others, the more we can learn from eachother! I hope this helps! Elizabeth

Netflix is now showing this as an instant play movie! We are still in the process of recuperating from watching the movie last night. It was so well done! We are feeling so sad today for all of the people with lyme disease who are not able to find treatment and for all of the people with illnesses such as PITANDS, MS, Lupus, Chronic Fatigue, etc...... who may have lyme and never find out that lyme may be at the root of their disease. Elizabeth

Yes! I believe there are many infections, including Bartonella, that can lead to OCD. As many have said already, I would consult with a great ILADS trained LLMD to rule out other infections that often accompany Bartonella. Your daughter sounds like she has been very sick since birth and if she was born (perhaps congenitally) with an infection, chances are that the infection weakened her immune system substantially. Once an infection takes hold and weakens the immune system, the body is susceptible to additional infections. After one year of PANDAS treatment, we found out that our son had Bartonella along with Lyme Disease, Strep, Mycoplasma, Babesia and a parasite. He became very severe, PANDAS (or rather PITANDS) wise and has not been in school for the last two years. Treating all of the above infections has been a very long and bumpy journey, but so worth it. Our son is doing very well right now, although he still has some healing ahead of him. A really good LLMD can help you rule out these infections. I would advise reading A Cure Unknown by Pamela Weintrub as well as Insights into Lyme Disease by Connie Streisham. Elizabeth

I do feel that a combo antibiotic approach which addresses the lyme and bartonella should also address the strep. I now believe that this is all PITANDS and that these are not separate illnesses (i.e. lyme and PANDAS). For us, every single infection creates a PITANDS reaction, even viruses. So, by treating every infection with which your daughter is infected, I feel that you are addressing her PANDAS or PITANDS. I hope this helps. Elizabeth

Laura: I agree with Kim in terms of heavy detox! If you can, I would try to get 2 cups of bentonite in a day. Even just giving your daughter a 2 day break from antibiotics should help a little. All last winter, my son herxed so intensely from lyme treatment and we had to give him a 24 hour break once a week for about 6 months. I am so sorry you are going through this right now! It is sooooo painful! My thoughts are with you!

Actually, our doctor had just run out of the urine tests when we were in his office so our son tested for KPU via ART testing. So far, our LLMD has done the urine tests on all of his positive ART KPU tests and he has been right 100% with the ART. I thought my son had KPU issues long before we discovered lyme disease because of his reaction to chlorine and his complete inability to tan a few years ago. We are done with lyme treatment now and the herxing was very very rough. I have heard that if one does the KPU treatment at the onset of lyme treatment, the whole treatment will take less time and the herxing will not be as intense. Elizabeth

Hi Laura: My son finished lyme treatment about 2 months ago, but he has had some lingering issues (he is around 90%) and he has had several infections post lyme (klebsiella, flu, and mycoplasma). Our doctor is now checking most of his patients for KPU and said that he feels that our son's lingering issues are toxin issues and that the KPU treatment will help him deal with toxins. I am working with a nutritionist who feels that heavy detox will also help with this without having to do the KPU treatment so we plan to try the heavy detox with bentonite clay first for a couple of months. I will let you know how that goes. This will be our first week post lyme that our son has not had an additional infection and we took him off antibiotics this weekend. So, I will give you an update in the future. We have not checked our daughter for KPU. She is 7 months post lyme treatment and is also off antibiotics. She is around 98%. Our experience with her has been a need for a 10 day course of antibiotics with mycoplasma or staph. We can usually tell when she has picked up a new infection by an increase in "PITANDS" symptoms. Her lowest since the end of lyme treatment has been 85%. Within a few days of starting antibiotics, she jumps back up quickly. I am hoping that as time goes on, we will no longer see ANY symptoms with illness. Elizabeth

LLM: I have been researching this same topic lately because my son has been diagnosed with KPU (HPU). I suspect both of my children are positive for different variants of the HLA gene since many of my family members have been tested positive for these genes because they have serious autoimmune issues. I believe there is a correlation between KPU and the HLA gene since both are dealing with poor detox mechanisms. Following is a great article my doctor gave me about KPU: http://lymelighters.org/uploads/012610_KPU_Forsgren_explore_18-6.pdf Interestingly, roughly 1 out of 4 people have a positive HLA gene and 1 out of 4 kids will tic at some point. I wonder if these 1 out of 4 kids who tic have the HLA gene? My good friend has three kids who tic with illness and they all have problems with mycoplasma. So far, 2 out of 3 of her children have been diagnosed with KPU. Here is a quote from the article about HLA and KPU: "Dr. Klinghardt has followed the interest in HLA genetic typing in regards to biotoxin illnesses such as Lyme disease and mold. Until now, patients with certain halotypes were considered more difficult to treat as the body could not properly and effectively respond to and remove biotoxins from Lyme disease, molds, or in the worst cases, both. In his experience, once the HPU issue is addressed, these HLA types become far less of a concern in most patients." Most people can test for KPU via a $55 urine test. Ideally, you are supposed to treat for KPU at the beginning of lyme treatment and then dealing with lyme is supposed be a much simpler process since you have dealt with your detox issues first. Both of my children are finished with lyme treatment and I am trying to figure out if I will still do the KPU treatment. It is an intense treatment because you are replenishing the body with high dose minerals that are vital for detox and in doing so, you are dislodging heavy metals which took the place of the zinc in your body. So, you need to make sure you are on a heavy metal detox program. Has anyone done the KPU treatment? Elizabeth

Our LLMD resolved Bartonella for both of our children with the azithromycin plus omnicef combo. He believes that you need to deal with parasites, viruses and mycoplasma before your body will attack the bartonella. The azith/omnicef combo also dealt with the mycoplasma. Elizabeth