Dedee

Yes, that is correct about Buhners theory on the cytokine cascade. My LLMD had this discussion with me at our last visit. She wants to work on this with my dd as she has so many neurologic issues. I have ordered one of the herbs he discusses in his book for this and we had already started Nettle which another physician suggested for inflammation and OCD. My daughter seems to be doing better on the nettle and the change in antibiotics. It all makes sense. Just hoping it works. Sorry to high jack your thread. Dedee

Dr. T is an awesome doctor and has helped many kids. However, he is not a lyme doctor. Bartonella tests are not 100%, meaning they frequently show negative even when the person is positive. So if you ever had a positive you should consider your child positive. PANDAS / PANS cause similiar reactions so don't get all caught up in the name. This is an infection triggered issue. Figure out the infection or infections, and aggressively treat them. This is not a time to be squimish. Especially with bartonella. You need to find an LLMD who is used to treating bartonella so you can get the right treatment path. If your child also has strep issues, then that will be covered with the antibiotics used to treat the bartonella. I am currently reading the book by Buhner called "Lyme Co Infections". It was recommended by our LLMD. It is all about Mycoplasma and Bartonella. You should get it. Very interesting. Dedee

That is the way Biaxin worked for my daughter. It helped but never got the BIG symptoms. We finally went to an LLMD who started using combo antibiotics. That is usually what stubborn Myco P needs. She got much better on Minocycline / Cefdiner combo. It took two years of treatment before her titers came down to a normal range. We are about to draw titers again because our LLMD believes they may be going back up after we switched off the Mino. We are back on Minocycline /Cefdiner / Rifampin at present and things are settling back down. I believe LLMD's are the best at treating Myco p. I am currently reading Buhner's book (recommended by my LLMD)on Lyme co infections. It is all about Mycoplasma and Bartonella. I recommend it to any family dealing with Myco. Dedee

I am so excited to hear about your plan. Considering the severity of what you are dealing with I think PEX is exactly what you need. Good for you for working so hard to find someone to give your child the treatment he needs. Get some rest and take care of yourself. Dedee

LOL at your drunken sailor. We also struggle with yeast issues as you know. I have recently just re-introduced enhansa back into our arsenal but only at a very low dose. I know you have to be careful with enhansa with CBS mutations but Dr. Yasko says at very low doses it works well to keep ammonia levels down and help with yeast. My daughter only takes it once daily and so far no problems. I am adding a quote from Dr Yasko from another board where she posts. Maybe it will be helpful. "For instance, I know trehalose is a sugar. It is a natural sugar. It helps to reduce glutamate,helps those with Huntingtons (ie adult neurological issues) it helps to stabilize SAMe which is especially critical for adults and kids on this program, and it helps with yeast issues. Xylitol is a natural sugar that actually kills strep. So, someone who is a diet expert, may see those as sugars, I see those as tools to help with strep and glutamate." Dedee

I think you are probably right. Under normal circumstances, you would give them time to process the information and so forth but this is anything but normal. I have been where you are in that I wondered how I would physically get my daughter into the car and to the office. People thought I was crazy and I heard all the lines about "Who's in charge anyway?" and all that crap (sorry, still fresh wounds). So, I feel for you. It would be good if you could give him something to help his anxiety some. I would just wait till you have to break the news. The less time he can worry the better. You just have to get through it the best way you can. I am sending positive thoughts and best wishes your way. Sorry you are having such a hard time. My heart goes out to you. Dedee

I have heard that Duke Childrens is great in treating enchepalitis related to autoimmune disease (aka PANS). Dedee

I agree with what the others are telling you about the genetic mutation. Certain SNP's can cause high ammonia levels because of abnormalities in biochemical processes. This can be addressed with the appropriate supplements and diet. You might consider doing the 23andme test to get a complete picture. My daughter had high ammonia and sulfates when we first started. We have test strips and her levels have dropped significantly. Ammonia levels can be associated with hand flapping and other stimulatory behavior. I didn't know that for a long time and my daughter (even though she isn't on the spectrum)was prone to hand flap when excited. Since her levels have come down, this has stopped. It was never a really big deal, but something I found interesting. Dedee

Two of my PANS children tested positive for Myco P. We tried treating it through regular physicians but ended up going to an LLMD. Myco is a very difficult pathogen to eradicate and most physicians do not fully comprehend the seriousness of the infection. My daughter was treated for two years before her titers came down and it was only after using a combination antibiotic that we were successful. I urge you to educate yourself on Mycoplasma. Dr. Nicholson has some great information on the web and you can find some good information on some of the Lyme co-infection articles as well. Even if your child does not have lyme, it is best if you get your child treated my an LLMD. They know best how to treat Mycoplasma. The longer your child remains infected and poorly treated the more difficult it is to clear the infection completely from the body. My daughter took Zith alone for 6 months and her titers continued to rise. Biaxin helped her symptoms, but as I said she needed combination antibiotics. Her last titers showed her IgM in the high normal range and her IgG still high. That was in the winter. We are about to draw titers again because her LLMD is concerned that it may be becoming active again. (Constant dry cough) Many Myco patients regress after having normal titers. I urge you to consider finding someone who will treat aggressively. Best of luck. Dedee

You absolutely need to see a PANS specialist. Even if things get better with this episode it's only a matter of time before you see this rear it's head again. JMHO. Dedee

I just had a conversation with our LLMD about Dr. Bruhner. She had just returned from a conference of his and was really excited about the new information. She says he is all about addressing the cytokine cascade that lyme and co-infections cause and then believes that once that is under control the body is more able to actually fight the infection. So she is supposed to be getting back with me on some supplements to help in that direction. In the meantime we have changed antibiotics and I had added in GABA supplement which had seemed to help my daughter until she started to herx from the new antibiotic. That was expected though and I am hoping it calms down here in a few days. If I hear back from the LLMD on cytokine control I will let you know. Dedee

Our doctor just told us it was best to give it at night. We don't worry about food. My daughter's Vitamin D levels were very low and they have come up to the normal range. Dedee

I am confused on the results of your MAO A R297R. Does it really say that your daughter is ++? This gene is only carried by females and thus a daughter can only be +/-. A son will be considered (red) single + because he will only recieve the gene from his Mother and they will refer to this as homozygous but females can only be heterozygous on the MAOA. At least that is the way it is discussed in Yasko's book. Either way, it doesn't matter because it's still a positive and not a good thing. Just wondering if genetic genie had a mishap. Thanks for letting us know about the rapid turn around time. That is good to hear. I have several family members (myself included) who have tests pending right now. Good luck with your interpretations also. It's all I do with my spare time lately. I have results of 3 kids and my brain is on overload trying to figure this stuff out. Make sure you download Dr. Amy Yasko's free book on Autism. It goes over each SNP. I have read those sections numerious times. Keep waiting for it to sink in. Dedee

LLM, thanks so much for the words of encouragement. You are such a good friend. I know you are right. I am just road weary at the moment. Rowingmom, I suspected as much regarding the antibiotics, but appreciate the confirmation. Thank you so much for all of your input. I value you experience and advice on these matters. All the Lyme parents here are very knowledgable and such a great resource. I truely don't know what I would do without you all. With love and gratitude- Dedee

You all are correct about the babesia. I mentioned this to the LLMD when it was happening and she said the same thing. My daughter had the same symptoms when this all hit the fan in 2011. When she is on antibiotics she never complains of it but as soon as she is off it comes back immediately. She has been on the Zith / Rifampin combo about 3 months. We have tried this before when we were seeing another doctor and got the same kind of mediocre results. My faith in Zith for my daughter is not high. The rifampin does seem to really help with tics, but I'm going to ask for a change when I have my phone consult on Monday. I don't mean to be an instant gratification kind of person here, but OMG I am about to loose my mind here. After 3 PANS kids and dealing with PANS for 11 years in one capacity or another I consider myself pretty seasoned in handeling the ups and downs of this. HOWEVER, let me tell you, I am just about at my whits end dealing with my daughter. We have done IVIG twice, been on antibiotics for 2 1/2 years, treating methylation, treating genetics, been to PANDAS specialists, LLMD's, been through the CBT program at USF twice and still she is no where near acting like the 9 (almost 10) year old she is. Most of the time our house is constant stress and I AM TIRED OF IT! Something has to give somewhere. Ok, I feel better now. At least for a little while. Thank you all for your advice and support. Don't know what I would do without everyone here. You guys are the absolute best. Dedee

Ok ladies....don't know why I hadn't read that before or I would have certainly stopped it immediately. We are absolutely no where near being able to stop antibiotics (so jealous of those who can). When my daughter was coming off of the septra we decided to stop all antibiotics for two weeks to get it all out of her system. She got sooo sick. She had terrible headaches and stomach problems. Her fatigue was awful and she was so pale with dark circles under her eyes. She kept complaining that her legs hurt and she couldn't breathe. I couldn't wait to start something back. I knew then the whole lyme thing was absolutely real. I feel terrible for doing this to her and not being more up on the supplement I was giving her. I just pray that stopping it really will help with symptoms. Keeping my fingers and toes crossed. Dedee

I am so sorry you are feeling down and bitter. It's ok to feel that way though. We all do at times. I am feeling it a bit too. My oldest son is now 17. He was 6 when he first started with severe OCD and he suffered for years. Back then there wasn't much known about PANDAS. My pediatrician did at least realize it was related to the strep but didn't know what to do other than send us to a psychiatrist. So for years we just treated the strep when it came up (with usual 10day course of antibiotics) and we used SSRI's for the OCD. When he was 11, he had strep 4 times in a 2 month period and things escalated and his tics started and were horrible. That was when I took matters into my own hands and insisted he have his tonsils removed and we finally found a PANDAS specialist 12 hours away to see. It took some work, but now at age 17 he is pretty much OCD free except for a few issues with sensory eating. He is a straight A student and looking forward to his senior year of high school. He still has some moodiness and a tendency to get down sometime but his genetic profile shows defects in that direction. Compared to the 6 year old kid who couldn't go outside because of germs, or eat off of plates or use forks, or touch certain objects, and had to wash his hands excessively, etc... he is doing very well. Also, we took him off of antibiotics last year after being on them for 5 years straight and could not tell any difference. Not sure if that is helpful or not. Can't say there was any one thing we did that helped. Having his tonsils out and starting antibiotics regularly was certainly the starting point. After that was simply supplements and time. Antinflammatories help during flares. I sincerely hope that you start seeing some improvement soon. I know how stressful this can be on a family. Best of luck. Dedee

I think I may have really messed up here. I'll try not to make this too long. You may all recall that my dd 9 was diagnosed in Nov 2011 with PANS. Initially thought it was strep and Myco p induced but last year she tested positive for lyme and her LLMD believes she also has bartonella. She has been on various antibiotics and combo antibiotics and we have gone through some good times and some not good times. The last 6 months have been very difficult. She had been on Septra for a while and was absolutely a horror until we realized (by genetic testing), that she can not take sulfa drugs. So we switched to Zith / Rifampin combo which did take away some of the craziness but still things are not where they need to be. So I have really worked on her genetics. We have her 23andme results back and I have studied like my life (or hers) depends on it. Working diligently on methylation, immune support, gut support. I have spent a fortune on supplements (the right ones for her SNP's). Going slowly to avoid detox. Feel like I am doing everything I possibly can but still she is doing terrible. So yesterday I was reading and I came across something about Lyme and Grapefruit Seed extract. It said that Grapefruit Seed Extract works as a cyst buster for lyme and that some people use that as a treatment for lyme. Well, I give my daughter Grapefruit seed extract to help with yeast issues. She also takes nystatin three times a day and diflucan once a week. I have been giving her the GSE for quite a while (can't remember exactly how long)just as an extra precaution for yeast. So I'm wondering if the GSE is causing her to herx because of the cyst busting?? She takes it 3 times a day and I'm sure she has been on it at least 3 months if not longer. Since she has been on it so long would the herx have worn off after a while if that were the problem? Has anyone else heard of this? I would appreciate advice on this. I am getting so desperate in regards to her behaviour that I decided if she wasn't better by the end of the summer I was going to start her on an SSRI. It is really starting to affect the family and my marriage. What do you all think? Dedee

Those titers are about the same as what my daughter had. Are you seeing an LLMD? If not, I would suggest that you do. Minocycline was a very good drug for us. We did see some major herxing in the beginning so we backed off and started only once a day for the first 10 days then gave the second dose. My daughter is 70 pounds and she took 100mg twice daily and she was also on Cefdiner once daily. This was the best combo we have used and gave the best results. Our LLMD switched after about 6 months because she was worried about resistance. We have not seen as good results with the other antibiotics and I keep asking to go back. Minocycline crosses the blood brain barrier and that is why you see the herxing, but once you get past that it is very helpful. Just want to reiterate that those titers are very significant and should be treated very aggressively. If your son is having neurologic symptoms they are most likely tied to Mycoplasma. Please do not underestimate the significance of these titers. I'm not sure that a regular (non-LLMD) will understand how Mycoplasma should be addressed. It took 2 years for my daughters IgM to get within the normal range and her IgG is still very high. The longer this goes untreated, the harder it can be to completely eradicate. Please keep us updated on your sons progress. Best of luck. Dedee

So by saying you don't want a diagnosis yet are you saying you do not want to know if there is an infectious trigger causing these problems? Just curious if you have noticed a difference in when your child is ill and when the symptoms increase or not? It is possible that he may get better with natural antimicrobials or antibiotics which ever route you choose. Just a suggestion. Dedee

Welcome to this forum.....please feel free to post in what ever area you feel your heart leads you. It sounds like you are suspicious that your son may have PANDAS or PANS. If that is what your Motherly instinct tells you then you should investigate that possibility. Do not let any Doctor tell you other wise. Especially since you seem to have good reason for feeling the way you do. First let me say that lab work can be mis-leading. Unless you have had a very thorough work up by one of the top PANDAS / PANS specialist in the Nation, put that aside. Many things can cause PANS.....strep, Mycoplasma, lyme, viruses, etc.... You mention that you see some behaviour changes along with the tics. That is very classic of PANS / PANDAS. There is a lot of good informtion of the PANDASnetwork.org website along with links to many good articles. Arm yourself with information and do not let anyone discourage you. I have 3 children with PANS. I started fighting this battle 11 years ago when very little was known about PANDAS and certainly many people thought I was crazy to think my son's OCD was caused by a throat infection. We regularly drove 12 hours to see a specialist. Please feel free to join the PANS / PANDAS group if you want more information. It's a great group for support and information. Dedee

As I'm sure you know, Mycoplasma is very difficult to get rid of. We treated my daughter for two years before her Myco titers came down to the normal range. What really started to make a difference was when we started to see an LLMD and she started her on combo antibiotics. We tested titers every 4-6 months. The last time we tested, her IgM titers were in the high normal range but her IgG titers were still elevated. She is still being treated for Lyme and Bartonella so that theoretically covers myco also. I'm not convinced the myco is completely gone because of a dry hacking cough that has shown back up this past month. If I were you I would try to find an LLMD to treat if possible. Best of luck. Dedee

Oops, sorry double post.

I wish you luck. We are working on that as well. Hard to afford all the supplements. I have chosen what I believe to be the most important based on our SNP's but still can't get them all. Detox can be a problem if you go too fast. Hope you get good results. Dedee

Thanks for the reminder. I didn't even realize......