Dedee

Trying to send you a pm but your box is full. Dedee

I agree with PR40. Your son is young. What might seem mild to you now can quickly become out of control and difficult to treat. What I would wonder is what is the underlying cause. You shouldn't settle for tolerable. You need to get this under control while you can. For some reason you considered there was a possibility for Mycoplasma at one time. You need to find out what the infectious trigger is and get it treated. I can't imagine that a weekly dose of zith would treat anything. It is a preventative dose at best. Can you possibly get strep and mycoplasma titers ran? At least that is a starting point. It's possible that he was triggered by a viral infection but you need to make sure there isn't something lurking that you can get rid of. In the mean time, you can try ibuprofen for inflammation and see if that helps. Best of luck. Dedee

Sending you a pm Dedee

I am a fellow frustrated Vanderbilt parent. I wish I could have spared you that time and energy. We live in the Nashville area and have 3 PANS children. There is no one in this area who will be able to help you. There are a couple of practitioners who are listed as LLMD's or PANS physicians but I can tell you they are no where near "true speciality", that you will get by traveling. We have seen Dr. M in Florida several times and Arial95 is correct she is conservative but I will say she did get us IVIG for my daughter. She only wrote the recommendation letter. We ended up doing it locally through one of the integrative practitioners we use in Nashville. The Nashville Practitioner is good and understands PANS somewhat but I still have to be the guide on most things. She doesn't treat Lyme and didn't even want to test my daughter for lyme. I had to insist on it and then I had to find an LLMD out of state to treat my daughter. But she was helpful with getting the IVIG done and she has helped with some other PANS related issues when we couldn't get out of state. I have been my kids medical director. I decide which physician they need to see and when. If I think they need testing, we make a trip to Florida and see Dr. M. She is great for testing and digging for the problem. When I knew we needed serious treatment, I found an LLMD. When I thought the kids needed a little something more we headed south again to USF for their wonderful CBT / ERP program. It was a life saver. Again, I also have a local practitioner who is PANS literate that supports our treatment and knows we use specialist out of state. She is willing to learn but I think she realizes she isn't on the same level as the others yet. Even though she didn't believe in the whole lyme testing thing she has been supportive since we got the results and started treatment. We haven't had to use her in quite a while though. Lastly is our pediatrician, she recognizes that the kids have PANS, knows we use specialists out of state and is available for the routine things. She is a believer, but by no means knows how to treat. Anytime we go to see Dr. M or any other specialist we ask them to send our Ped a letter explaining the treatment plan. I feel it is the respectful thing to do and keeps her in the loop. I have heard really good things about Dr. Rao in Texas. That might be a good place to start with your testing. Then you can see what you are dealing with. If you end up with lyme or myco or both you may want to consider an LLMD closer to home. Dr. B may also be a good place to start with testing. Again, if you end up with lyme or myco, I would absolutely switch to an LLMD. If you have any questions, feel free to pm me. Dedee

I believe that IV antibiotics are the way for chronic infection. I also believe God is the way. I will pray for your family. Please keep us posted. I am very interested to hear how the IV antibiotics work. If you don't mind can you tell me or PM me which doctor ordered the IV antibiotics for your son. Also, how long were you on oral antibiotics before going this route? Keep the faith. Dedee

Unfortunately many on this board have been in this dark place at some time. I am sure this is a very sad time for you. I can remember crying every morning in the car before I went into work and crying in the afternoon before I had to go home. Take comfort in knowing that many of the things you describe have been written here before and have gone on to improve and have healthy relationships. I second the suggestion that you re-consider how effective your antibiotic protocol is. Sorry I can't remember exactly what your daughter is taking or how long she has been on it. Also not sure what sort of testing you have had done but raging is common in some types of tic borne infections. My daughters rages and defiance were so bad initially we ended up starting her on lamictal (a mood stabilizer), which helped tremendously while we got the whole infection piece identified. She still takes it but at a lower dose than when we first started. The other thing I strongly encourage is a formal CBT / ERP program. When my daughter did the program at USF they addressed issues such as her rages and defiance and taught both myself and my husband techniques on dealing with her when she reacts in ways that you are describing. The program was such a blessing to me because just as you describe, some of those situations which turn the family and the entire day upside down, they show you how to diffuse them and keep the house hold calm. It is an invaluable program for both the child and the parents. I can't say enough about how it would change your life. This is something you will be dealing with off and on through out your childs life. It's great for the family to have the tools moving forward to keep peace in the house. It's very reasonable and they have extremely reasonable housing just across the street. Ok, I will stop ranting about the USF program. Just a suggestion. Hang in there. Keep us all updated. Dedee

QM - We used bovine colostrum with my second son when treating myco p. It was to help his immune system as he had CVID. I guess it helped as he seemed to clear myco p much quicker than my daughter did. He was never as symptomatic as she was to start with though. msegal7- My daughter did the minocycline/cefdiner combo for six months and did well with it. After 6 months she hit a lull. The LLMD said it isn't unusual for many antibiotics to stop working after that amount of time and so she switched her over to septra/amoxicillin. When we made the switch all h*** broke loose. We initially thought it was a major herx and we decreased her dose but after a few months we realized she just can't take septra and we stopped it all together. Once things calmed back down we started her on Zith / Rifampin. Things are just now starting to settle down again. Her main symptoms are anxiety, raging, defiance, seperation anxiety, tics, & OCD. I am so happy (and a little afraid) to say that I think we are back on track after a little detour with the septra. It's only been 3 weeks so on this combo and it's just been about the last week that things have been showing improvement so we will see how the next week or so goes before any major celebrations. Every child is different and responds differently. I hope your daughter gets a good response with the doxy. Dedee

Our LLMD considers an Indeterminate band to be positive. That being said, your daughters IgG has one lyme specific band that is positive. Also if you read your report, Igenex says that "Indeterminite double starred bands in a negative report may indicate clinical significance". I take that to mean you would use that information in coorelation with your daughters symptoms as LLM mentioned. Lyme is a clinical diagnosis. That is why we take our children to see physicians who have treated hundreds of lyme cases and viewed hundreds of lyme results and compared them with clinical history to come up with a diagnosis. It would be great if lyme were like strep or Myco where we could do a swap or run a titer and its either positive or negative. Unfortunately this is not the case. It's not a black and white diagnosis and that's hard when grey isn't your favorite color.:-) I can tell you are really struggling with this. You need to decide how much you trust your physician, and use your Mommy instincts. I have gotten a lot of flack from a couple of members in my family because they believe my daughter couldn't have lyme because we live in the south and one of my nephews who is in medical school has convinced them that lyme can only be gotten in the north east. Whatever! This is a hard road. I'm sorry you're having such a difficult time. Dedee

Most of the PANDAS specialist will tell you that just because you don't have high strep titers does not mean you do not have PANDAS. Many kids simply do not have elevated titers. It doesn't mean that they don't react to strep, only that their titers do not rise. Some non-PANDAS / PANS educated physicians will say that this means they don't have PANDAS/PANS. Absolutely not true. It's simply a difference in the response of the immune system. If your child is showing an abnormal immune pannel this may very well explain the lack of immune response. Hopefully you will get more answers with the results of the labs you just had done. Dedee

msegal7 I am glad you have been able to get relief for your son. The only thing I would add is in regards to the mycoplasma. You are right that doxy is a treatment of choice. For us though we didn't see much change when we used doxy and our LLMD changed my daughter to minocycline because she said it crosses the blood brain barrier better than doxy and gives a better result with neuro symptoms. We use a combination of minocycline and cefdiner and after getting through the initial herxing we had good results. Just thought I would share our experience. Best of luck to your family. Dedee

Well don't worry you won't get the "worst Mommy of the year award", because I'm clearly getting that one this year. We all lose our cool sometimes and when you are dealing with this type of illness you do good just to get through the day with your sanity intact. I have done and said things that 5 years ago I would have NEVER thought I would have done. In fact I would have harshly judged other parents for saying some of the things I have said in my worst moments. I am not proud of those parenting moments. However,the fact is that during these stressful times when the children are in crisis mode, we the parents, are in survival mode. We are putting all our energy and resourses into getting our child better. That leaves you with little in the form of coping skills. That's ok. You are focusing on what is most important at this moment. You are only one person and you are doing a great job in a very difficult situation. Give yourself a break. For every one thing you have done wrong, there are 20 things you have done right. I do want to second what dcmom said about a CBT / ERP program. It can work wonders on the type of OCD your Son is dealing with. I used to think that because this was caused by a physical problem that therapy would not be the best answer but I was wrong. I now regret that I didn't make my oldest son go when he was young. He is now 17 and refuses to participate in a program. My youngest two children have attended the program at USF / Rothman and it is so wonderful. It has made a huge difference in their lives. I would highly encourage you to consider this type of program. USF is the best around and they understand the PANDAS connection so you don't feel like an alien when you go in discussing it. Try to do something relaxing for yourself. Give yourself some down time. I know it's hard, but you will be a better Mommy if you have had a break. If you absolutely can't get away, I'm all for a nice large glass of wine (or two). Dedee

I will just give my opinion....Rarely does one antibiotic cure Lyme. Most often it takes a combination of antibiotics and then after a period of time (usually 6 months), switching that combination to something different. Lyme is not a quick fix or a simple fix but your daughter can get better. If you feel like your daughter is well and no longer needs treatment or if you truly don't believe it's lyme that is your decision as her parent but please understand how lyme treatment works before you give up on it. Dedee

My niece also has IgA nephropathy. If I remember right it has an autoimmune cause as well. My neice is doing well and she is 26. She still has some problems with more than normal UTI's. But you are right, enough is enough. How much does one family have to go through already? I am so sorry that all this has come to light. I'm sure it's over whelming. Autoimmunity can cause havoc on so many body systems. I hope you are able to get these things under control. Sounds like you have a doctor who is on top of things. Please keep us posted on her progress. Dedee

This makes me so nervous. We haven't gotten my daughter's 23and me results back yet but I suspect she has a CBS mutation based on many symptoms she has and the fact that she reacts so badly to certain medications. She is supposed to have some dental surgery this week under general anesthesia and I am very anxious about it. She had anesthesia one other time about 3 years ago and was somewhat combative when she was coming out of it. However her pain was also pretty bad so not sure if that may have caused some of it. I wish I knew what to do to make things go smoothly. Dedee

My oldest PANDAS son was on antibiotics for 6 years. It was necessary to keep symptoms stable. As he got older it became evident that his PANDAS symptoms were few and far between. So when he turned 17 we took the leap and stoped the antibiotics. We have always been deligint about probotics and anti-yeast products. My daughter has currently been on antibiotics for 2 years. She will probably be on them for a while since we are fighting lyme. As long as you use your probiotics correctly, I wouldn't worry. I would be more concerned about having PANDAS symptoms return and cause havoc which can happen in the blink of an eye. Dedee

I will have to say that I agree with much of what LLM is saying. Unfortunately, much of this is trial and error. Sounds terrible to say out loud when discussing treatment of our children. I have 3 PANS children. They all fall on three different places on the continuum (if you will). My oldest is strictly a strep responder. He doesn't get worse with a cold or virus, only if he get's strep or someone in our family gets strep. I have investigated the possibility of lyme with him, even did a trial period of treatment for lyme and got nothing, nada, zilch in the form of a response. Clearly he is what we initially believed....a PANDAS kid. My middle child responds to strep and the flu but not small viruses. His lyme test is boarderline even by ILADS guidelines. He has shown some improvement on lyme treatment but it's not clear if it's because he also had Mycoplasma and he cleared the mycoplasma while treating the lyme. So the LLMD says it's possible he is just a PANDAS kid that got mycoplasma or maybe he does have lyme. We are still on the fence with him as he is not my most significantly ill child. My youngest daughter is severly ill. Her strep titers have never been extremely elevated, only slightly. Since her initial exacerbation her mycoplasma titers have been elevated and her first lyme test was through Igenex and was positive by ILADS guidelines. So each child can be different and you have to make your observations as a parent, and go with your instinct as to what works for your child. Sometimes we make mistakes and go back to the drawing board. But most importantly to remember is that usually the parents are the best judge of the situation. We may all be doing something slightly (or not so slightly)different from the next person in terms of how we are treating our kids but it's still the right thing for our situation. Best of luck to everyone on this path. Dedee

Just to add to what Hopeny is saying, I would like to discuss the difference in a positive band and an indeterminate band. This was very confusing for me when we got my daughters results. My daughter had two positive bands which were 18 & 41 so she was considered negative by CDC. However she also had other bands that were indeterminate which were 39,83 93. Our LLMD considers all indeterminate bands positive. Our doctor explained like this....An indeterminate band is simply a band that shows up but is not dark enough to be considered positive. Sort of like a pregnancy test. There is no such thing as being a little bit pregnant. If there is a line showing up that it was detected then it's positive. Therefore by ILADS standards my daughters test was extremely positive. And believe me if you spent much time with my daughter you would agree. Unfortunately, because the first person to read my daughters result was not an LLMD we delayed treatment for a while before seeking out an LLMD. I regret that time. Anyway, just want to throw in about indeterminate bands because it is somewhat confusing. Good luck to anyone out there fighting this horrid illness. I'm sure it can be over come! Dedee

Yes, Hopeny is right. In fact, I am suprised that your doctor would retest so soon especially if you are still seeing symptoms. Our LLMD said that the more chronic the lyme the less likely you are to see a positive. So it's possible to get a negative test and still have lyme. That's why lyme is a clinical diagnosis. If you have seen one positive and you have corresponding symptoms I would not doubt the results. I would be more likely to doubt the negative results. Unless of course your child appears to be well and symptom free. Dedee

Well an LLMD will call an indeterminate band positive. Indeterminate just means they saw a line but it wasn't very dark. Our LLMD says it's sort of like a pregnancy test. You can't be a little pregnant. If the band shows any color it's positive. So then you look at which bands are specific to the lyme bacteria. Some bands are seen in other organisms and some bands specific to only lyme. LLMD's put more weight on the specific bands. In your case band 31 is a lyme specific band so that is pretty telling. 41 and 45 are not species specific but the fact that they are both positive gives more weight to the over all validity of your positive results. So these results are very suspecious. Of course lyme is a clinical diagnosis so the LLMD would look at the results along with the symptoms and then make a diagnosis. Dr B is a great doctor but he isn't a LLMD. You need a true LLMD. We see one near Indianapolis. There are several good doctors if you ask around on this forum. Looking at your results and reading your history, I think you need a very experienced LLMD. JMHO. Dedee

Awesome! I am so proud of you ladies! If there is anything those of us in the south can do let me know. Dedee

I agree that you may need a multi disciplinary approach. I think antibiotics, whether it's by mouth or IV may be essential. You may need to start my getting your gut primed with probiotics for a few weeks before starting and being deligint about taking them while on your antibiotics. IVIG would follow after having some antibiotics on board for a while and then a wonderful inpatient program. I know you can do this. Treat the core issue first then work on the CBT / ERP. You have gotten some great advice from the others who have responded. Take all into consideration. Best of luck to you. I am so sorry you are going through this. Very unfair. Dedee

That's great! I sure hope this clears things up and you have a peaceful summer. Dedee

Thanks so much for posting this! I love it! Dedee

I am so glad to hear that you are seeing improvements. You are correct that most likely the doxy is working on the myco. I am concerned about the "inconclusive" lyme bands. What were her lyme results? Have you done research on the ILADS websites? Lyme tests can be very tricky. An indeterminate band is often considered a positive band by most LLMD's, where as it is considered negative by the CDC. Also, ILADS only requires one positive species specific band to be considered positive. My daughters test was considered negative by CDC but highly positive by ILADS guidelines. I would suggest you see a LLMD. At the least you are dealing with mycoplasma and bartonella. Both of these are highly associated with lyme. The best person to treat myco and especially bartonella is a LLMD. It's wonderful that your daughter is doing better now. I hope that you are able to enjoy this time. However, bartonella (and mycoplasma) are very difficult to treat and requires an expert in that field. We have the lyme, myco, bartonella trifecta and are 2 years into treatment. There have been really good months and really bad months, but we are far from cured. Unfortunately, we only started the lyme / bartonella treatment one year ago. I just wish we had started sooner. So, that is my recommendation (for what it's worth). Hopefully you can find a good physician to help. In the meantime, enjoy this peace with your daughter. Dedee

Yes, I would try another antibiotic. Not suprising that Augmentin caused some stomach distress. It is a really good antibiotic but some kids do have that problem. Zithromax, Biaxin, Clindamycin or possibly even Cefdiner are other choices. You should insist on something else. Minocycline would be great if you were treating Mycoplasma but I think I understand you are dealing with strep. You should try the others and if you try one for two or three weeks and don't see a change then you need to switch to a different one until you get it right. A better choice is to find a doctor who knows how to treat PANDAS. Find a specialist and make an appointment right away. I know you are trying to deal with what is going on now but this is most likely not going to be your only episode. You need someone who is going to be available to treat your son when this happens next time and the next. I don't think that someone is your current physician. A PANDAS specialist is invaluable. In my opinion, it's mandatory for successful treatment of this disease. I know it cost money and time to travel, but you are loosing time and money trying to convince this physician to treat your son correctly. The longer your son goes with incorrect treatment, the harder it is to get things back to baseline. Again, just my opinion, you need to find someone who will give you the antibiotics you need without you trying to convince them. Best of luck. Dedee