KeithandElizabeth

Well, I think every LLMD may treat things a little differently. Our LLMD also treats each person differently based on how strong their immune system is and how many infections are active at the time. For instance, our LLMD started my daughter on an intense regime to deal with every infection at once, but he went slower with our son because he was so sick and he did not feel that he would tolerate such an intense treatment. So, I do not think there is a specific order in terms of treatment. Sometimes, if a person has many infections, some of the microbes are suppressed by the other microbes in order to keep the host alive. Hence, many LLMD's will continue to check the bloodwork throughout treatment in order to make sure that they are catching all of the potential coinfections. Elizabeth

Okay Melinda, now you have to start "peeling the onion" on each infection. Our son also had numerous infections (lyme, strep, mycoplasma bartonella, a parasite and babesia) and we saw improvement as we treated each infection. Although it felt so scary to know that so many bacterias, viruses and parasites are living in your child, at least you now know what you are dealing with and you can get rid of them. It has been very bumpy, but as we get rid of each infection, we keep seeing a happier and healthier child. Sometimes, we will see symptoms that we have not seen in a long time, but they are always short lived and our son's overall percentage improvement gets higher every month. We will be here for you! Elizabeth

Oh Susan: I vividly remember the night that I found out my daughter was positive for lyme. I was horrified and relieved all at the same time. Have you asked your LLMD if you can be on the cancelation list? I just want you to know that my thoughts are with you! Elizabeth

I have heard that the CD 57 (killer cells) is a good number to follow in lyme treatment for adults. Supposedly, a number less than 100 can be indicative of lyme and I think that a number above 200 is optimal. I know that Lymemom is very familiar with this bloodwork and maybe she can add her two cents. Elizabeth

Nancy: The first article mentions that sometimes the mycoplasma IGM does not rise with recurrent infections. It says you usually see this in adults because they are the one getting a recurrent infection. The second article discusses possible autoimmune reactions to mycoplasma. Elizabeth http://www.mycoplasmapneumonia.net/immune-response-to-mycoplasma-pneumoniae http://findarticles.com/p/articles/mi_m0ISW/is_243/ai_109946549/?tag=content;col1

Yes, mycoplasma was a big issue for us and there have been some great articles posted on this forum or the PANDAS forum about how a recurrent mycoplasma infection may not create a rise in IGM. I will try to find the article later and repost it. elizabeth

Dr. Ann Corson had a fabulous speech today at the ILADS conference in New Jersey. She said that children with lyme will sometimes only have neuro/psychological symptoms. Dr. Corson said that movement disorders, handwriting, vocal and motor TICS, OCD, sleep issues, depression, suicidal thoughts, etc.... are all symptoms of neuro/psychological lyme. Both of my children have strep, mycoplasma and lyme issues and they have such different symptoms. My daughter only had TICs when she had strep and my son had tics off and on with all the microbes. They both had separation anxiety with all microbes. I am not sure if we can always differentiate between which microbes cause which symptoms. I keep trying to find correlations myself ..... Elizabeth

Oh my gosh, Ann Corson was fantastic!!!! She really understands the big picture! Elizabeth

Wow Dawn! I am sorry that you have lyme, but I am glad that you have discovered it so that you can get rid of it! I would definitely suggest reading The Cure Unknown by Pamela Weintrub as well as Insights into Lyme Treatment by Connie Streisheim. And the ILADs lyme conference is being streamed live from New Jersey today and tomorrow. Dr. Ann Corson was fantastic. She also included PANDAS in her discussion. I would highly recommend renting the video from this conference once it is available. Elizabeth

Wow, great detox program. How is your son doing? Has the detox helped him? Elizabeth

Both of my children have lyme and babesia and my daughter has never had an IVIG and my son had 6 IVIG's. elizabeth

Hi Dawn: I agree with SF Mom about the detoxing. My daughter started Mepron at the beginning of her lyme treatment and she really herxed with the whole combo. I did feel that including the bentonite clay or charcoal pills really helped! I tried to space the charcoal pills or bentonite clay hours away from the antibiotics. Our LLMD also included herbal/homeopathy detoxing for the organs, like Mundipur and Renalix. My children have not had a hard time with the taste. FYI, it is very expensive. Our insurance, luckily, has covered the majority of the cost of it, but I believe that Mepron can run around $1000 to $1200 per month without insurance. Elizabeth

I do think that PANDAS (PITANDS) is not black and white and, yes, it may be just strep for some of these kids. I sure hope so because lyme is complicated to deal with and takes so much longer to treat than strep! I am just amazed at how many of the kids on the forum are showing up positive for lyme and/or mycoplasma, bartonella and babesia. dcmom, I am so glad that your children are doing so well and I hope your battle is over!!!! Elizabeth

PhillyPA: Have you done the IGENEX testing, including the coinfections? How about the C3d immune complexes? These immune complexes can sometimes create a false negative lyme test. What tests did Brian Fallon run for your son? Elizabeth

dcmom: I agree with Pacificmama in that lyme is just one of the microbes that can cause PITANDS. Strep was our actual trigger initially and whenever we treated our son for his repeated strep infections, he would instantaneously improve. At one point, however, he just stayed in PANDAS mode constantly even when we kept in on long-term antibiotics. So, I feel that lyme and PANDAS are not two separate illnesses, but that PANDAS, or PITANDS, is a response to lyme, strep, mycoplasma, bartonella and babesia. It appears that some of these children who have tested for other coinfections have mycoplasma and strep (without lyme) or bartonella and strep, etc..... So, I am currently curious as to whether anything is just strep. I do not know this answer, but it is a question that is on my mind. Elizabeth

ajcire: Again, I understand how you may feel this way, but it really feels "hurtful" to have all of this doubt towards the families who are dealing with lyme. You have probably experienced this with your own family, friends, and doctors when dealing with "PANDAS." As a mom who has seen dramatic improvement with treating my children for lyme and then dramatic improvement again when treating them for the cyst form of lyme and then again improvement when treating for babesia, I am now a believer. I feel as though these various treatments have literally saved my children and our family. We all don't need to agree about everything on this forum, and debates are very helpful. But let us support each other because we are all already dealing with so little support in the world and we have all dealt with so much pain. Elizabeth

PhillyPA I completely understand your point of view. I was aghast when lymemom was posting about the possibility of lyme as a possible PANDAS trigger. We live in Colorado and I felt that there was no way we could be dealing with lyme and I felt that my son had EVERY PANDAS symptoms and initially did well with HdIVIG. Eventually he began to deteriorate after 6 IVIG's and I panicked!! I tested for lyme and coinfections searching for ways to save my son. He had almost stopped speaking to us and he was "checked out" To me, if your child is not healing, you keep fighting and keep searching. What else can you do.... Lyme treatment is sooo very complicated. It can take months to see improvements. And the coinfections are even more complicated and easy to miss. For us, the lyme treatment has taken 7 months so far and my kids are on multiple antibiotics and herbs and detox formulas. But, they are both at least 90% better after 7 months of treatment. The difference is just incredible! I feel like we have our son back! I am SO thankful to have found the reason as to why the typical PANDAS treatment was not a complete cure. So, I guess that I empathize with your thoughts because I felt the way you do once. But after seeing the difference in both of my children, I do encourage everyone starting this journey to test for ALL possible infections, including lyme via IGENEX and mycoplasma and strep, etc..... Elizabeth

Nancy: I would definitely schedule a visit with a VERY experienced ILADS doctor. Many doctors consider a positive 31 on the IGM to be a long term highly specific lyme band. I know this is all so confusing and overwhelming, but maybe you have reached the real root of your daughters problems. A very experienced lyme doctor can help with ALL microbe issues, including strep and mycoplasma as well as the autoimmune issue that often comes with chronic infection. I know Dr. Horowitz in Hyde Park, New York, is supposed to be amazing at working with the big picture of chronic infections. And Ann Corson is also supposed to be great with all microbes and detoxification. Both are booking out months in advance. I do believe that when all of your daughter's infections are properly addressed, you may begin to see some real healing. Elizabeth

Wendy: Thanks for the update on your friend! What antibiotic was her son on prior to the lyme coinfection diagnosis and what antibiotic is he on now? I am also wondering if she ever did the CAM K on her son? I believe that treating the infection should really help her son and should help her friend as well. Elizabeth

I edited! Thanks, elizabeth

Hello: I just wanted to say that our son's initial "PANDAS" moments were also in response to strep exposure only. I always knew when he had strep just in the way his behavior changed because he never got sick or had a sore throat. When he did not reach 100% with IVIG's, we discovered the lyme and mycoplasma. He is now getting closer to 100% with the correct treatment for each infection. The right antibiotic combo has helped more than the IVIG's. So, please do not rule out lyme and mycoplasma or another possible infection based on symptoms. Elizabeth

Wow Isabel, you have really done some great research in such a short period of time!! I have also looked at the Marshall Protocol and it seems so fascinating when you get to their website and read their testimonials, but I have not heard of anyone on the lymenet forum having such great success. Who knows though because these forums can be so biased and you are often dealing with people who are still sick because the healthy people have gone on to live life! Anyway, our LLMD also told us to NOT supplement with Vitamin D. He did not give us the great explanation that you gave us though. He did say that most lyme sufferers have low vitamin D and that the body usually rectifies itself once the chronic infection is gone.

Oh, this makes sense now. Our son also had mycoplasma issues and we did not know it because his IGM was normal, but his IGG was very high. He was also on Augmentin at the time and we later discovered that Augmentin does not help with mycoplasma. As I have mentioned before, our LLMD feels that mycoplasma is second to lyme in terms of how much damage it can do to the body and how sneaky it can be because it lacks a cell wall. Again, you much fell so relieved to see your son doing better. Just the fact that he is happier is HUGE! Elizabeth

What was your son on for lyme treatment before you started the Doxy? I am curious as to what the antibiotic regime was that did not help with the Mycoplasma. Elizabeth

What great news!!!!! I have been reading the lyme boards and lyme blogs and I am beginning to think that the people who do not see an upward trend by the 12 week mark of lyme treatment are possibly missing one of the coinfections. Anyway, just my latest ideas. Thank you for sharing the good news. It is always so uplifting to hear these updates. Elizabeth