KeithandElizabeth

Justine: I believe that the LLMD's who are also ILADS doctors are a little more up to date and aggressive with lyme treatment than some LLMD's who are not specifically members of ILADS. I would double check. Here is the ILADS website: http://www.ilads.org/ Elizabeth

smartyjones: Funny about the whole relationship part of these infections! But, you are right! Our LLMD always describes how the different bacterias/parasites/viruses relate and depend on each other and in order to keep the "host" alive, they even suppress each other. Hence, this is why a very sick person will have negative tests for possibly the lyme, yet have a positive coinfection or vice versa. Another interesting tidbit on this topic is that our doctor said that if he has a patient who just has mycoplasma and not lyme, etc.... than the mycoplasma alone can take a much longer time to treat than if the person has many other infections. For instance, he projects a person with just mycoplasma will take 2 to 4 months on 2 antibiotics to completely eradicate the bacteria and yet if they had many other infections, he often sees that the mycoplasma is gone in 6 to 8 weeks. I thought this was counter-intuitive and yet, now, it makes sense. Elizabeth

Justine: You are right about the CD 57 test in terms of it being a controversial test for lyme disease. No one in our family has ever done the test so I cannot speak from experience, but I know that lyme mom does do the test for herself so maybe she can give her thoughts on it. I do read about it quite a bit on the lymenet forum though and many of these people refer to having a number above 100 as one of the means to knowing whether they have beat the lyme. I know that SF Mom's friend sees the doctor who developed the test so maybe she can also add to these post. Again, I am not an expert about this. elizabeth

Justine: I forget about whether or not your son is seeing an ILADS doctor? If so, they will probably test for all of the co-infections and I really HATE to say this to you, but more often than not, there is often a co-infection with lyme disease and it is so important to figure that part out. Most of the co-infections can be treated with the lyme antibiotics (I believe) except babesia, which needs an anti-malaria drug, like mepron. But on the bright side, maybe your son does just have lyme and there are no co-infections! Elizabeth

Melinda: I am not sure about the standard lyme test that is covered by insurance... maybe lyme mom or Pacificmama will chime in here. I just want to suggest having the CD 57 (killer cells) test run as well since this test should be covered by insurance and a number below 100 is often indicative of lyme. Elizabeth

Wow! What great news!!! These are such great posts to read! Thanks for sharing. Elizabeth

This is an interesting article by Klinghardt. I am not sure what my thoughts are on this article yet, but I wanted to share the info: http://articles.mercola.com/sites/articles/archive/2009/08/04/Dr-Klinghardts-Treatment-of-Lyme-Disease.aspx

Bartonella is one of the few co-infections that can occur on its own because there are two types of bartonella. One type is from a cat (called "Cat Scratch) and/or a dog and you can get this from the animals saliva, feces, etc..... Than another type of bartonella comes from a tic bite and this type often is associated with lyme. However, if someone is really sick and their body is not fighting the lyme very well, then their lyme test may be negative even though the co-infection test was positive. Often, after a few months of treating the co-infection, the doctor will go back and test the lyme and find a positive lyme test because the lyme is not being suppressed by the co-infection. Elizabeth

We had an interesting appointment with our LLMD yesterday discussing these topics. My daughter initially had strep, mycoplasma, lyme and babesia. All are gone now except the babesia. Anyway, I told him that her OCD/TICs are gone, but that she still has mild anxiety (in terms of going to sleep alone, etc..) , which I felt was correlated with Bartonella. She ended up testing negative for Bartonella, but still positive for Babesia. He said that he disagrees with a great deal of the sentiments in the lyme/PANDAS world about certain bacterias causing certain symptoms. He said that if any of these bacterias/parasites can cross the blood brain barrier and enter the brain, then they can create a neurological/psychiatric symptoms. He said he felt that the babesia was creating the anxiety in my daughter. So, again, I do not understand all of the controversy between lyme and PANDAS. I think it is all PITANDS and different microbes can create the same symptoms. Elizabeth

Jodie: For the first 6 weeks of lyme treatment, my daughter was put on 3 antibiotics plus mepron plus two lyme herbal remedies. She really herxed!! Our doctor feels that you really need to attack the bacteria because they are so smart and learn to hide out from the antibiotics. However, he felt that our son was too weak to handle this strong of a regimen and he only started him on two antibiotics initially. Elizabeth

Well, I know your daughter has lyme and these are common co-infections to lyme. Our son had very high IGG levels for mycoplasma and normal IGM levels, but our doctor did muscle testing on him to correlate with the blood work and said that the mycoplasma was doing more damage to him than the strep and lyme at the time. However, the antibiotics that you use for the lyme treatment should also help with the C. Pneum and Mycoplasma. I know that Augmentin does not really help with Mycoplasma, but the rest do! I also think that once you start clearing out the lyme, your daughter will be able to fight the other bacterias/viruses. Our son kept having repeated strep infections, even after 5 IVIG's and prophylactic antibiotics. This was before we discovered the lyme. Elizabeth

Justine: You really can see it "all" with herxing. We saw TICs, anxiety, hyperactivity, mood lability, nightmares, etc..... Our experience was that when we initially started the lyme treatment (post many IVIG's) our son regressed and as time went by, he would do better and better, and yet, still have regressions the whole time. The regressions just became less intense over time. Now, 6 months into lyme treatment, the regressions will last an hour versus days. If things became unbearable, we would hold off on the antibiotics for one dosing and pour in all the detoxes. This really seemed to help and get him back on track the next day. Every family is different though and one good friend, who sees Dr. J, had to go off antibiotics for 2 full days at several points in time to make sure what she was seeing was a herx. So, just remember that the herxing can be intense and just keep in contact with your LLMD (once you see him). Elizabeth

Jodie: I just want to let you know that all of our son's herxing was very mental (PANDASish) for him. My daughter did have herxing that was more physical. As they say in the lyme world, lyme can mimic at least 300 diseases and therefore, the herxes can also mimic the full array of symptoms. I think Pacificmama's idea of corresponding via fax is a great idea! Elizabeth

LLM - what a great post!!! I completely agree with all of your sentiments. Let's try to share our personal experiences and not judge each other. Each of our situations may be a little different and although we may all be here with similar symptoms, we may have different microbes causing these symptoms. I know that for our family, this forum has been a savior. In my desperation, I have consulted with so many of the doctors mentioned on this forum. And I have learned something valuable from each of these doctors and these doctors are still learning from us! I would consider our son to have been very severe, PANDAS wise, and the high dose IVIG really helped him. Then, he regressed a little, after multiple IVIG's, and little posts from other moms really helped us figure out what was holding him back. There was a time when mycoplasma was a big topic and we did the blood test and it was high. So, I am so happy that I read about Mycoplasma on this forum. When Pacificmama and lymemom began posting, I was simply terrified because I thought "no way is this lyme with all of these mental issues and no physical issues." But I could not not investigate these other issues because our son was not doing well and he was paralyzed with fear and stuck in the house. Hence, our family was stuck in the house. So, I had to keep searching and I couldn't not jump into the latest "fads" because we had no alternative. So, yes, we can choose not to follow some of the blood work that certain families are doing, but for those of us who really need help, these additional tests give us alternative avenues of healing our children. My son is now doing so well and he is having playdates and sleeping and finally going back to school... Thanks to this forum! Elizabeth

Well, our doctor focuses on the B vitamins and a product called phosphatidyl Choline for the brain food. Elizabeth

Were the results the same for IGG and IGM? Elizabeth

I think everyone will advise a new parent on this forum slightly differently based on their own experiences, naturally! However, we live the least lyme infested state in the United States and my son did not have one physical lyme symptom because he presented with all OCD/TIC symptoms. After analyzing the intense emotional journey that we have been through, I would advise all new parents to go ahead and do the IGENEX test for lyme and the co-infections on top of the regular lab tests for mycoplasma, strep, etc..... The initial investment spent in testing all of these microbes can really pay out later when a possible IVIG/PEX fails. IGENEX has very few false positives and if one is unsure about the possibility of a false positive, then they can go ahead with the 31 KDa epitope test to confirm. I am not quite sure as to why we are differentiating so much about all of these microbes and how they affect PANDAS/PITANDS. This has not been an issue before when families have had low ASO titers and still had PANDAS issues. We all knew that other bacterias/viruses could still cause the same symptoms. Again, as I have said often, other families who have gone to see our LLMD did NOT find lyme, but instead found mycoplasma and staph to be the culprit of their OCD/TIC issues. I guess I am not quite sure as to what the huge debate is about the different microbes. As I have also mentioned many times, my son had lyme, babesia, bartonella, STREP, and mycoplasma. Peeling away at these layers has brought our son back to us and our family back to a functioning, happy family again. Elizabeth

Hello: I just want to add that, like momofgirls, we started this journey over a year ago with an immunologist who felt that we needed monthly IVIG's to cure our son and to prevent future autoimmune issues. Whenever you see a certain type of doctor, they will judge the situation by their particular perspective. We were scared to death and began monthly IVIG and shared our story on this forum. Our son initially did wonderfully and than began to backslide. Then we discovered that our son actually had additional bacteria/viruses causing his issues and we stopped the IVIG's and we are now doing the lyme treatment and we are seeing great success. For our family at least, we are learning that a weak immune system was not really our issue, but a compilation of stealthy bacterias were weakening the immune system. Now that we are appropriately treating the bacterias, our son's immune system is getting stronger. We may discover something new and we may be making additional mistakes, but we are sharing what we are learning with everyone so we can all learn from each other. I think that the attacks on this forum are fear based and I understand this because I have never experienced such fear in my life as I have this year. So, please, lets be gentle with each other and support each other! Momofgirls has been a savior to me this year and I could not have made it through this experience without her support. Now we need to support her as she begins her lyme journey! elizabeth

Great info Wendy: I have often read that the toxins from the die off of the spirochetes are sometimes more harmful than the disease itself. Our doctor has said that the detoxification during lyme treatment is so important and he said that initially, you need to focus on detoxifying the liver. Then you need to focus on detoxifying the kidneys. Finally, during the final stages of lyme treatment, he finds it is really important to focus on the brain. Elizabeth

Yes, our son also had mycoplasma issues, but only his IGG's were high at the time of the blood draw. Our doctor does the ART muscle testing and said that the mycoplasma was doing the most damage to our son (who also has lyme, bartonella and babesia). We just left our lyme doctor's office and he was describing how mycoplasma can become systemic and in his mind, mycoplasma is second to lyme in terms of the damage that it can do to the mind/body. Our doctor usually recommends a combination antibiotic regime for 2 to 4 months for mycoplasma alone. He prescribed azithromycin and omnicef for our son and then he recently prescribed azithromycin and bactrim for another child that had mycoplasma. Augmentin is usually not very helpful for mycoplasma. Elizabeth

Nancy: The 6050 Igenex test is $475 and the 5090 Co-Infection test is $660. Whew, a lot of money! If you will be drawing blood for your daughter, I believe she would be old enough for the C57 blood test (killer cells) and a score below 100 is usually indicative of lyme. IGENEX, I believe, does not do this test, but your regular lab can test this number. We only did the cheap version of the test the lyme 183 IGG/IGM ($70) and the basic Bartonella test ($135), but in hindsight, I wish we did the more comprehensive test like you are doing, even though it is so expensive. But for those who will have a hard time with the comprehensive 6050, the 183 can be an alternative. I believe that some people have received a portion of the IGENEX costs back from their insurance. Elizabeth

Nevergiveup: Toxoplasmosis has also been implicated with schizophrenia. I had elevated toxoplasmosis levels with my first pregnancy. My daughter does not have bipolar or schizophrenia, but here is an interesting article about the connection between toxoplasmosis and mental illness: http://www.sciencedaily.com/releases/2009/03/090311085151.htm]

I also want to add that I know that Dr. J often uses IGENEX for lyme and babesia. Specifically, he orders the Babesia Fish test. And then he uses Specialty Labs for Bartonella. I am not sure why he uses a different lab.... maybe one of his patients can chime in here. Elizabeth

I called IGENEX and spoke with the doctor on site and he said you should wait at least 4 weeks post IVIG to do the test. I did not clarify about the possibility of having a false positive with him. Again, I would test yourself at the same time in order to help with the big picture. As an adult, I would also order the CD57 blood test (killer cells) because it is often a good indicator for adults that they may be fighting lyme if the number is less than 100. Elizabeth

My daughter tested extremely high on the Cunningham test (CAM Kinase of 179) and very high on all of the neuronal levels, except dopamine 1. She has had mild issues (compared to our son) since she was born. She had Tics when she was 18 months old and then again at the age of 11 when she got strep. The lyme treatment has gotten rid of the Tics and I would say that she just has some remaining anxiety issues right now. I also want to note that I do think that the hdIVIG may still be beneficial for many of these children, but I think that it is so important to treat the infections first because some of these infections, unlike strep, need multiple antibiotics and for longer periods of time. For our son, the high dose azithromycin was not as beneficial as the combo of azith and omnicef together. Our daughter, who has never had an IVIG, is scheduled for a hdIVIG in one month and we are now completely on the fence as to whether or not to go through with it. If she were younger (she is almost 12), I would probably hold off on it and see how the rest of her healing process progressed throughout the year. I know with our son, we plan to just wait and see how he progresses since he is doing so well and he is only 8 years old and he has had so many IVIG's. Elizabeth