Dedee

A few other things I notice about your post. Regarding the tremors, this is classic textbook for GABA / Glutamate imbalance which you mentioned he has. He should most definately be on some sort of GABA support. My daughter takes GABA three times daily among other things. It looks like your son needs supplementation for a few things. When are you starting the antibiotics? You mentioned waiting? Why is the physician wanting you to wait to start the antibiotics?

So you had lab work ran in December and your physician is only now letting you know results? First, that is a problem. In no lab anywhere does it take 3 months to run or get results of Mycoplasma titers. I'm not sure who your physician is but I would have a huge issue with that. My kids have dealt with Mycoplasma off and on for 3 years and we have ran titers every 6 months for 3 years, I can tell you that the MOST I have ever waited for titer results is 2 weeks. Delay in results equals delay in treatment. That is not acceptable. You posted the IgG results for Mycoplasma which indicates past exposure. It can also indicate current infection if it continues to rise. However, the real indicator of current Mycoplasma infection is the Mycoplasma IgM titer. Do you know what those results were? Mycoplasma is a stealth pathogen and very difficult to eradicate. It hides in many different body systems and so one antibiotic is often not sufficient to destroy it. I have two children who had Myco P. They did not get better untill they were on a combination of antibiotics, and even then it took over a year for my son to test negative. (Over 2 years for my daughter). You need to do some research on Mycoplasma. Dr. Garth Nicholson is considered the expert. Google some of his work. It is not unusual for someone to have Myco p and after recieving treatment have a relapse. As I said, my son was on antibiotics for over a year and finally tested IgM negative. We changed his antibiotics to address Lyme (never took him off), and after about another year he started having terrible anxiety and depression that was completely new to him. After some re-testing, we discovered that his Mycoplasma titers had gone back up again. This is what has made me so adamant about Mycoplasma. We had really marked that off our list of issues to address. The IgG and IgM titers that we had followed had decreased nicely untill they were in the normal range, his symptoms were much better, all the things you should see when eradicating a bacteria from the system. Then, wham....he is symptomatic again and the titers had doubled out of no where. All this while he was still on antibiotics. It's a very scarey thing, the way it can hide out in the body....much like Lyme. I would recommend finding an LLMD who is familiar with treating Mycoplasma. All LLMDs know how to treat the Lyme co-infections and can help you more than someone who just thinks they know what to do. If someone tries to give you a month or a few weeks of antibiotics for Mycoplasma, they haven't dealt with this monster very much and your child will never be completely free of it. JMHO. Dedee

Early on we did test for a few viruses but I don't think it was extensive. I just wondered if anyone had a list of a complete viral testing panel that should be ran? TIA Dedee

If you know she has PANDAS you should start looking for a PANDAS specialist right away. You will need a minimum of one month of antibiotics (3 is best). Most likely you are only going to get this from a PANDAS specialist. If you can't get any help, go to the NIMH website and you can e-mail Dr. Sue Swedo. One of her collegues will contact your physician and give them the latest update on how to treat PANDAS. You will need to give information on your childs medical condition and how things started in addition to your pediatricians contact information. This has worked well for several people I have talked to. Dedee

This is most likely a herx reaction. Increase fluids. You may back off the Augmentin just a little to decrease the herx reaction and increase slowly to the recommended dosage. This is actually a good sign that you are killing off bacteria. Try to get through it and I bet you will have a good response on the other side. Best of luck. Dedee

I can't remember if I have mentioned to you before Rogers Institute. They specialize in OCD related eating disorders. Also, they understand PANDAS and PANS, but they get that you must first treat the eating disorder. They have a wonderful reputation. There is an inpatient clinic and honestly it sounds like this is to the point where you need to be headed. You are not able to treat this on your own. She needs intensive therapy. Her life literally depends on it. Dedee

I can only give you my personal opinion based on my experience with my children. I'm not sure what mutations your kids have. Lithium is necessary to transport B12 into the cells. Those with MTR, MTRR and SHMT mutations tend to be low in lithium. My children were so low in lithium that their levels were undetectable. You can give over the counter lithium orotate supplementation (not the same as prescription lithium) to replace lithium levels just as you replace B12. This helps transports B12 into the cell. If there is no lithium, it doesn't matter if you have B12 or not, it will not be transported into the cell. In my opinion, the benefits of Lithium supplementation is under estimated because people get confused and think you are giving prescription Lithium. Prescription lithium is given in doses of 900mg - 1800mg. Lithium orotate supplement is around 5mg. Also, when you are depleted of lithium it causes behavior problems. I can't tell you the wonderful progress that my daughter has made since adding this one supplement. You must start slowly and gently work up to a full capsule. It's always best to do urine and hair samples to determine if there is a need for supplementation first. I must admit that I tested two of my kids and then the rest of us just started on it. I feel so much better too. That's my 2cents. Dedee

My son got much better when we started combo antibiotics. We started minocycline and rifampin and he started getting much better in about 2 weeks. Had an initial herx reaction then the improvement. Mino is much better than doxy because Mino crosses the blood brain barrier. You will get more of a herx with mino too though so it is suggested to start out slower and work up. Also, if this is chronic Mycoplasma you most certainly will need a combination of antibiotics to make headway. It's a real b**** of a bug. Best of luck. Dedee

I'm confused, if your child tested positive for bartonella and lyme then what more are you looking for? That alone should give you your answer. It takes very specific types of testing to show inflammation in the brain. At the conference, they spoke about this and said that unless the person doing the imaging and the person reading the results knew exactly what area they were looking for it is unlikely they will find the inflammation. You know there is inflammation because there are symptoms. You need to find an experienced LLMD and start treatment instead of trying to get traditional medicine to give you confirmation of something you already know. Dedee

This is all very typical PANDAS / PANS symptoms. You will need more than 5 days of Zith. Minimum of one month to get things settled down. Several things you need to do. You are going to have to educate yourself until you think your head will explode. You can go to the pandasnetwork.org site and they have lots of information there. You can not count on a physician to know how to treat this. You will need to find a PANDAS / PANS specialist and make an appointment right away. There are not many so you may have to travel, but it will be well worth it to get your son the help he needs. Do not delay in getting things going. The sooner you get things going the quicker things get better and the easier things turn around. When PANDAS / PANS goes untreated for long periods of time it takes longer and harder treatment modalities to reverse the effects. Best of luck. Dedee

We have struggled with Mycoplasma with two of our kids. The best thing we did was find an LLMD who got us on the right track. It sounds like your physician knew what he was doing when he started you on the Biaxin. Biaxin works good for Mycoplasma especially when in combination with another antibiotic. Zith is not as good and the Amoxicillin is only a supplemental antibiotic, you would do better with Rifampin. One of the best moves you can make at this point is to concentrate your energy on teaching her to take pills. I completely understand where you are coming from. When we started this with my daughter 3 years ago she would not take any medicine of any kind. Nothing...nada....zip. We started off using Zithromax cream from a compounding pharmacy and taught her to swallow mini M&M's. This did take some time, but you have to start the healing process somewhere. She would never even consider any sort of liquid antibiotic. She would immediately throw it up. You can really start making progress when you can start getting her to take pills. I would not recommend ignoring Mycoplasma. The longer it hangs out in the body the more body systems it will invade. It is a stealth pathogen and hides out in many different areas of the body. It can lie dormant, but the longer you have it the harder it is to get rid of. Do some research on Mycoplasma. Dr. Garth Nicholson has done a lot of good work in that area. This is nothing to fool around with. You need to be aggressive in treatment. Best of luck. Dedee

I'm going to give you my honest opinion (for what it's worth). If you are treating Mycoplasma (and those are some high numbers) with only 250mg of Zithromax you are in for a long hard fight. Your aren't dong much more than just fighting a forrest fire with a water gun. Mycoplasma is a stealth pathogen that invades multible body systems. See if you can google some of Dr. Garth Nicholsons work on Mycoplasma. It can take months to years to clear Mycoplasma and even then you may see relapse. Also, Myco can be a co-infection of lyme. You may want to consider Lyme testing. Either way, LLMDs are the best at treating Myco P because they are so familiar with it. If you are only treating with one antibiotic it will be a very long recovery (again JMHO). I have two children who have been treated for Mycoplasma. My daughter had Myco, Lyme, bartonella, and anaplasma. Her Mycoplasma titers are now in normal range. My son had Mycoplasma and Lyme. His Mycoplasma titers went into normal range after one year of combo antibiotics and I was so thrilled. However, about a year later he started to regress and was having depression and anxiety. We retested him and his Mycoplasma had re-activated. You should see if you can find someone to give you a combination of antibiotics. At the very least you need a stronger antibiotic. Biaxin works well but you must be aggressive with dosing. I would find an LLMD. They know how to treat this beast. Best of luck - Dedee

I try ibuprofen for about the first 2 days of a flare. If I see that the flare is going to last longer than that then I go for the steriods. My daughter has Lyme and I know that many Lyme patients don't do well with steriods but my daughter responds beautifully to a steriod burst. Turns her right around. Dedee

Here is my suggestion.....You have a ped that is at least opent to the idea. You have a child that you know exactly when this started. The NIMH says these are the critera. Dr. Sue Swedo and her team at the NIMH are more than happy to discuss these criteria and treatment with physicians. All you have to do is e-mail her and give the information. Include physicians name and phone number, and the background on your daughter. If Dr. Swedo can't contact your ped personally then one of her team members will. I know a couple of people who have done this and it really works out well. Just goe to the NIMH website and the information is there. They highly encourage this exchange in order to educate physicians and help kids. Other wise you need to immediately find a PANDAS / PANS specialist and make an appointment. You need a full lab work up and appropriate antibiotics. You need someone who is experienced and knows how to deal with this type of situation. Dedee

I will just throw in that the 23andme has virtually saved us. Not just that alone, but that plus a little urine & hair testing and then using the information along with the genetic information to develop a personalized supplement plan for my daughter. She was severly B12 defecient and wasn't getting any better just by supplementing. Once we realized she was extrememly low in lithium (undetectable levels), and you must have lithium to transport B12 into the cells, we had literally "solved the mystery". A little lithium oratate supplement has been a miracle worker for her. This isn't the same lithium that is prescribed by physicians, but an over the counter supplement. Let me tell you, it is better than any prescreption I have ever gotten. She is better than she has been in 3 years. Not perfect, but so much better. We are still working on other issues. We have found that she has low thyroid and she tested positive for another TBI, but at least we have peace in our house. The raging, and tantrums are practically gone. She still has physical symptoms, and anxiety and OCD are ever present. However, we can work on it without throwing objects or screaming the house down. That is a major accomplishment. So that's my plug for genetic testing anyway you can get it......... Dedee

I posted on your previous thread. I'm not sure what the IgG and the IgM are from? Strep isn't measured in IgG and IgM so there should be something on the lab results that tell you what those are measuring. Usually something like Mycoplasma or Lyme. You need to get a copy of your lab results. It's always a good idea to keep copies of labs in the event you need to see other physicians. Doctors don't like to give them to you but it's your right to have them. Be firm and insist that you would like a copy. That will also tell you what the normal range is. Dedee

I know exactly how you feel. Mornings used to be terrible at my house. Lots of screaming, tantrums and fit throwing. I would always cry on my way to work then sit in the car in the parking lot and pull myself together before going in. I kept extra make up in my car because it was such a common thing. I am so sorry you are going through this. I am confused about the IgG and IgM results. Normally Strep titers are ran as ASo and AntiDNase. IgG and IgM is usually measuring something like Mycoplasma or Lyme. To my knowledge there isn't a test that measures strep in that method. Can you look at your tests again and see exactly what those are looking at? Is your Doctor a PANDAS / PANS specialist? I see that you are giving your son Augmentin once a day and Biaxin once a day. What is the dose on those antibiotics? It's not unusual to be on two antibiotics to fight PANS. My kids are actually on three. However, each of the ones that you mention usually are given twice daily to have full benefit. So you are potentially giving two antibiotics but neither are at a dose to be fully beneficial. It would be better to be on Biaxin twice daily at it's full benefit (JMHO). I'm just not understanding the logic of two antibiotics at half the dose unless the idea is to work up to a full dose of both. I don't mean to be negative. I'm just giving my opinion based on what I have experienced over the years of dealing with this. I feel for what you are going through. It's a horrible experience. Hope things turn around soon. Dedee

I would think of switching antibiotics. Try something different. I think Biaxin is great. It helped my kids when others didn't. In regards to your question about GABA, it helps to calm neuroexcitability. I use GABA Balance by Holistic Health. My daughter worked up to 3 times a day. Dedee

Some of the symptoms you describe are very typical symptoms in disorders which cause extreme dopamine excess. There are several different issues that can cause excess dopamine. Dr. Jess Armine is excellent in treating abnormalities in neurotransmitters among other things. He has a website link below. http://www.drjessarmine.com/

You just need to make sure you have the lyme test ran through Igenex and then read the initial post and compare the results to the bands mentioned there. Do not rely on a physician to give you your diagnosis unless you know for sure you have an experienced LLMD. Dedee

Thanks. I will send this around to my family and friends.

Sorry, just now getting back to the board. There are 3 DAO's, rs2070586, rs2111902, and rs3741775. According to Dr. Jess Armine, they all work to metabolize extra cellular histamine. One other thing that may be helpful because you said somehow this may be related to folinic acid.........Check theses rs numbers as well: rs2071010, rs651933, rs7925545, and rs7926875. This group are the FOLR mutations and deal with blocking folate receptors. Those with FOLR mutations (the more mutations the more severe), are unable to move folates into the cells leaving a high amount of active reduced folate in the blood which is supposed to be a bad thing. Ok, that is the full extent of my contribution. Dedee

Try to put this hiddious experience behind you and do not let it slow you down on your quest to get your child the care he deserves. Just makes me so mad that we still go through this. I expected it 11 years ago when I first started this with my son because the diagnosis was so new in the Medical Community, but really things have come so far you would expect these educated jerks to get with the plan by now. Uggg......Keep up the good fight.... Dedee

I'm not sure about the folinic acid but the histamine portion of the article does bring something to mind. If you have a DAO mutation then there are issues with metabolizing extracellular histamine. If it isn't metabolized then more histamine hanging around. DAO is not reported on Genetic Genie. You have to put your raw data through Sterlings app on the MTHFRSupport page. Also through that app or any app that reports Allergy sections if you have several positive SNPS under the IgE section then that is an indicator that you produce more histamine and have higher levels of Inflamation and potential for "leaky cells" (think leaky gut). Just my thoughts. Dedee

Have you tried having someone at the NIMH contact your pediatrician? They will call and talk to him if you request it. You need to make an urgent request to Dr. Swedo via e-mail. Mark the e-mail URGENT DAUGHTER STARVING HERSELF! She or one of her collegues will respond. Make sure it is clear how urgent this situation is and how you can not get any help. Dedee