KeithandElizabeth

PacificMama: Thank you for posting! This conference looks very interesting. I am so happy that your oldest daughter is doing so well! Elizabeth

Hi julia; Thanks for sharing your protocol. I am happy that you have found the answers to what is causing your son's issues! And now let his healing begin! Elizabeth

We consulted with Dr. K two times on behalf of both of my children and I have the utmost respect for him and all that he had done for all of these children who have suffered so much! As in all illnesses, there is a learning curve and I think that we are at the forefront of that curve with PANDAS. My biggest piece of advice to all new families and to all families who are still suffering is to check for lyme via IGENEX. I so wish we had done that at the beginning and it is so non-invasive compared to IVIG and PEX. Lyme, strep, mycoplasma and bartonella are all showing up in MANY of these children suffering from these neurological/psychological disorders. I think it is vital to rid the body of the chronic infections in order to heal our children and I do believe that if a child is suffering from lyme or mycoplasma and even just bartonella, the typical "PANDAS" treatment may not be the full solution. Elizabeth

Our own story is that the HD IVIG helped our son tremendously the first time (before we knew he had lyme) and then stopped helping and even made things worse. Our son had 4 low dose IVIG's and 2 HD IVIG's. After all of the IVIG's and months of antibiotics, he still had lyme, mycoplasma, bartonella, strep and babesia. Properly treating each infection with a combo of antibiotics and using herbs and detox supplements is helping our son much more than the IVIG's. On another note, our son had elevated Cam Kinase, but normal (high end of normal) anti-neuronal titers. Our daughter had an elevated Cam Kinase (179) and 3 out of 4 of her anti-neuronal titers were extremely elevated. Two were 4x the normal limit. We never did do an IVIG on our daughter and she is doing fantastic now (knock on wood). She is done with lyme treatment and was off of antibiotics completely until our son developed a new mycoplasma infection and we starting giving azith to our daughter to prevent her from contacting the mycoplasma. We plan to take her back off antibiotics in a few weeks. So, I have not redone the Cunningham titers on our daughter, but perhaps I will this summer. This has been our experience and I know that every child has a slightly different experience. Elizabeth

i just wanted to add that my son had chronic strep 2 years ago and his tonsils are horribly crypted. At the very naive time in my life, I thought that maybe my son had a fantastic immune system because he continually had strep for a year and was never physically ill...... he just changed mentally and then we would give him antibiotics and then he would "come back" to us and then change again a few weeks later. The cycle continued until he no longer improved with antibiotics. I agree with EAMom about testing the whole family for strep and I also think it is important to test for mycoplasma and lyme via IGENEX. Elizabeth

Hello: Here is my take on the lyme/PANDAS question: PANDAS and/or PITANDS represents neurological and/or psychological symptoms in response to strep, mycoplasma, and/or lyme (borrelia). There are probably additional bacterias and viruses that can lead to these same symptoms, but these three seem to be the most prevalent on this forum. I think that it is critical to rule out lyme disease and mycoplasma because both of these bacterias lack a cell wall and can become chronic. Lyme morphs into three different shapes, including a cyst form that hides from antibiotics. It is important to test for lyme via IGENEX because this private lab includes lyme specific bands, such as band 31 and 34, that the CDC took out of their lyme tests because of a lyme vaccination that was supposed to come to market. Hope this helps! Elizabeth

Hello: I am not as familiar with high total IGG levels, but I do know that elevated IGE levels are associated with allergies. Elizabeth

Hi Cobbie: After his first successful week back at public chool, my son developed a new mycoplasma infection and we definitely saw some regression! Getting him into the classroom was a nightmare this morning and all of my memories from 2 years ago came flooding back because this was one of our first PANDAS symptoms It is all just heartbreaking. Anyway, he was supposed to go full time this week and I am just going to send him back part-time until after Christmas. So, I think part-time is a nice compromise for these sick little kids. Elizabeth

Right now I do not seem to have any lyme symptoms. I never realized I had bartonella, but when I was treated for it with 4 months of two antibiotics, my sciatica and eye twitch completely went away. And I always thought that my eye twitch was from my stress of dealing with sick children. Elizabeth

Recently, I have heard of so many stories about the mother's of our children with lyme/PANDAS showing up positive for lyme. Are there any mom's who have tested negative for lyme? Our own story is that both of my children had lyme, babesia and mycoplasma. My son also had bartonella. My own IGENEX test was: IGM: only band 41 was IND IGG: IND for band 31 and 34 and one Plus for band 41 Our LLMD feels that I have been exposed, but I do not have an active infection. I did have a bartonella infection though. I also did pull a tick out of myself 2 years ago and asked for doxycycline for 2 weeks and maybe I treated myelf? Anyway, I am interested to hear of other mother stories? Elizabeth

Hello I would call IGENEX and order a lyme kit and retest for lyme disease plus the coinfections. A couple of children have had positive bartonella tests, but negative lyme tests. Bartonella can come from a tic bite as well as from a domestic animal, in particular a cat (cat scratch). I would also test for mycoplasma pneumonia via your regular lab and consider a positive IGG test to be potentially positive as well since there have been studies showing that a recurring mycoplasma infection does not always cause an elevated IGM level. I would also consider testing the C3d levels (circulating immune complexes) because elevated circulating immune complexes can hide an infection in the complexes, thereby creating a false negative test. Perhaps others can chime in with any tests I have forgotten. Elizabeth

We had the same problem for months and months. The longest my son could go between bathroom visits was 4 minutes at one point. I have read that lyme likes to hang out in the kidneys/bladder area so I am wondering if this could be the problem? As we treated the lyme, the issue eventually faded. Elizabeth

Cobbie: I just wanted you to know that my thoughts are with you right now. My mother also has Hepatitis C. My son has had similar issues and constant high bilirubin levels. Did you figure out the bile issues by your son's gut issues? Our LLMD thinks that getting rid of all of the infections and boosting the immune system will hopefully correct the high bilirubin. Again, I can understand how overwhelming this all is for you and I think that it is helpful to vent! Elizabeth

My children are both on 500 billion units of probiotics a day. Our nutritionist (whose whole premise is gut health) feels that they will be on this level for 1 1/2 more years and then she believes that they will not need any probiotics at all because the ultimate goal is a perfect balance between the good and the bad bacteria. At this perfect balance, a person should have consistently normal PH levels in the body. elizabeth

Our LLMD uses their supplements as well. Both my son and I have used the Calm PRT and the Kavinace. It is hard to tell how effective they have been for my son because these supplements have been a small part of the overall regime. I used both supplements for sleep issues and they seemed to help me. Elizabeth

I would definitely go see an ILADS LLMD if he had a few bands positive. If the IVIG's are not completely curing your son, then my opinion would be to search for an infection/virus that may be the root of his symptoms. We were at that stage last winter and I know the desperation you must feel! Elizabeth

I am so happy you are seeing some progress!!! My son had a bartonella rash (purple streaks) across his back last winter and I never thought much about it until I read one of your posts saying that your son was positive for bartonella. I googled bartonella and sat there panicking as I looked at the computer. I then called lymemom and began our lyme journey! We really have learned so much from each other by just sharing our own experiences. It is so nice to get such a great update from you. And I wish you much success with your personal lyme/bartonella journey. Elizabeth

Hello: I am sorry you are not seeing more progress from the IVIG's. I know you did the IGENEX test and I am wondering if ANY bands showed any response even a indeterminate response. How about your son's mycoplasma levels... are the IGG's and/or IGM's elevated? Elizabeth

It really sounds as though those bicillin shots are helping. I am guessing you are seeing Dr. B (the LLMD Dr. B versus the immunologist Dr. ? I heard that he has great success with treating PANDAS with the bicillin shots and does not usually recommend IVIG? I just want to encourage you in that the lyme road can be soooo bumpy, but I think the trend will be upward after the initial few months. It also sounds like you are doing a great job with the detox aspect of lyme treatment! Keep posting your updates! They are great and we can all learn so much from eachother. Elizabeth

Oh I am sorry! Just a thought. What about trying Olive Leaf Extract??? I know that Stephanie, from this forum, is trying this. Elizabeth

I give my children 1/3 cup of bentonite clay with their probiotics before bedtime. We see the same nutritionist as SF Mom and she describes the bentonite clay as being like a magnet that is only drawn to metal. So, she makes the analogy with bentonite in terms of it only taking the toxins and not the good bacteria and nutrients. I only tried to separate the bentonite from the antibiotics, a few hours either way. Elizabeth

I am not as familiar with NJ LLMD's, but I just wanted to encourage you go to a LLMD for the strep and mycoplasma and mono issues because they continually work with all of the microbes. Even if your child does not have lyme disease, bartonella may be an issue and a good LLMD can rule these coinfections out and then help your family with the infections that are causing problems. I know that Dr. Horowitz is in New York and then there is Dr. Jemsek on the East Coast. Elizabeth

This is interesting! My son always broke in hives with illnesses, all over body hives, since he was a baby. He also broke out in hives with antibiotics. We discovered lyme disease last year and I am always wondering when he got lyme??? Now, I am beginning to think that he has had it for a very long time...... Elizabeth

I do not know the answer to your question, but our experience with IVIG was very similar to yours. Our son showed drastic improvement with his first HD IVIG. Then we began monthly LD IVIG and he eventually regressed and had elevated mycoplasma and strep levels. We ended with another HD IVIG last February and then discovered lyme disease and stopped doing IVIG's. Treating the infections with multiple antibiotics and herbs and using the detox principles has dramatically helped both of my children. I have noticed that several other children had much more dramatic results from IVIG with the first HD IVIG compared to the second or third HD IVIG and I have always been very curious about his. Hearing your doctor's explanation is interesting. I am sorry that you are seeing this regression. I know how frightening it is as a parent. Has any of your doctors discussed combining azithromycin and omnicef for the mycoplasma? Elizabeth

JAG: Below is an excerpt describing the cyst form of lyme from an article about lyme disease Borrelia Cyst "When the Borrelia spirochete finds itself in a hostile environment it appears to change into a cyst form and become dormant. One cause of a hostile environment is antibiotics in the body serum. However, when the environment becomes favorable to its growth, the cyst will open and the spirochete is released. When in the cystic form conventional antibiotic therapy will not destroy the Lyme spirochete." Because lyme can change forms, it can hide out when antibiotics are introduced by forming cysts that the antibiotics cannot penetrate. Flagyl and Tindamax are the most popular cyst busters! Hope this helps. Elizabeth