Rachel Posted February 7, 2014 Report Share Posted February 7, 2014 My ds was seen by a doctor in Texas last December. Finally got test results back and have a phone conference set up with the doctor this Saturday. The test results showed that my ds M pneumioiae IgG Abs was 953. Normal Range is 0-99. The funny thing is this same test has be done twice ( results were in range) after the titer showed up high 3 years ago. Does Mycoplasma only show it's head when there is an active infection in the body? I know this thing is hard to detect but I am in shock I guess. From reading I know it can move in and out of cells freely. If this has been in my ds body this long, what could I expect treatment wise? My son is on 250 Azthromycin and not seeing any improvement. Started it December 21, 2013. This test also showed the HHV 6 IgG Antibodies at a high range and I know that this indicates an active infection. My son's Anti-DNase B Strep Antibodies were at 390 which are high but I do not understand what this test is actually measuring. Does this indicate an active infection or past infection? Antistreptolysin O Ab was 15.1. Range is 0.0-200. To top it all off, my son ws diagnosied with strep 2 days ago. When this happen his vocal tic got worse and so did his tremors. I'm feeling just a little bit overwhelmed because I just want to keep him well. Big brother came down with strep 5 days before. How do you prevent the strep from spreading? My ds that has possibly PANS had already been on 250 Azthromycin since December 21st and now he is on Augmentin 2 times a day. I have been giving a probiotic before bedtime. How many hours should it be given after an antibiotic? How many days before you do a recheck to make sure strep is gone in both son's? Sorry to be asking so many questions. I will be getting copies of more new testing tomorrow. I am excited to know what may be causing the problems but very concerned about how I am going to keep my ds son well. Rachel Link to comment Share on other sites More sharing options...
3bmom Posted February 7, 2014 Report Share Posted February 7, 2014 I can only go off of my experience but we had symptoms improve when we did an antiviral, valcyclovir along with our antibiotics. It seemed the immune system has a difficult time eliminating the bacteria while it is also dealing with viral issues. We also addressed diet, no dairy, gluten, or GMO corn and soy. Think of the immune system as layers of inflammation overwhelming it to a point of dysfunction. Each layer you can remove will improve behaviors and lead towards healing. Maybe someone here can explain myco. I don't understand it very well except it can be difficult to get rid of. My DS wasn't very high but it didn't budge for over a year until I found Myco in myself and started treatment. I believe family members play off of each other especially with strep. Hopefully your tests tomorrow will also have some answers. Good luck! Link to comment Share on other sites More sharing options...
rowingmom Posted February 7, 2014 Report Share Posted February 7, 2014 Probiotics at least 2 hours after antibiotic. Link to comment Share on other sites More sharing options...
cara615 Posted February 7, 2014 Report Share Posted February 7, 2014 i suspect that I may have an infection that keeps my son's titres high. i was gone for a week on business and dh said that ds's tics were almost gone completely. I come back into town and they increased slightly. I am convinced its me. What do I need to do? Who should I go see? Primary? What do I ask him to test me for? And if I do have an infection, will they treat me without symptoms? Link to comment Share on other sites More sharing options...
Rachel Posted February 7, 2014 Author Report Share Posted February 7, 2014 Cara My oldest son got strep first and he did not spike a fever with the strep. The strep culture is more accurate than the rapid strep test. My older son also had mono last year and his immune system is not the same. When he mentions a bad sore throat, I take him to our primary care doctor. Our primary care doctor understands that our family does not need to be spreading any virus or infections to our PANS son. BTW you said you were gone a week, could it be dh has the infection or virus? Link to comment Share on other sites More sharing options...
Rachel Posted February 9, 2014 Author Report Share Posted February 9, 2014 Hi Everyone, I got to visit with the doctor about my ds testing. Our doctor is very concerned about the high mycoplasma antibodies. My son had this test two years ago and everything was in range. This next week my son will be rechecked for strep and will be put on Bixan 500mg twice a day starting next Friday. Does anyone know how long it will take this antibody to get into the system? I have read that most doctor give the antibotics at least 6-12 weeks to see any results. Is this basically what I can expect when starting new antibiotics? My son has been sick for over 3 years and I would like to see him get some relief from some of his worse symptoms. Our doctor is checking into some more natural things to see if he can get my son's tremors to stop. The tremors can happen any time but they are much worse when my son trys to do any exercise. My son has not able to stand or walk for over a year. My son's testing also revealed low C, D, B2, B6, B12 levels, Molybdenum, Zinc and a-lipoic acid. I will start adding some supplements to get these levels up. These levels showed up on a Genova NutrEval FMA amino acids test.This is really a good test to have done. It gives information about amino acids, essential and metabolic Fatty Acid Markers, Oxidative Stress Markers and metals. My son's levels were fine on the rest of the test. My ds aslo had a Neurotransmitter test done through Pharmason Labs. The doctor is concerned about Low Gaba, High Glutamate, High Norepinephrine, and Low Epinephrine. To try and get the Gaba up, I will be giving my son a Gaba supplement at night. Has anyone else done this? If so, how long was it before you saw any improvements in symptoms. Our doctor is hoping this wll help with the tremors. Our next step will be to work on the Norepinphrine and Epinephrine levels. Just wanted to give an update on my ds and hope this information on testing may be of some help to someone else. Rachel Link to comment Share on other sites More sharing options...
PowPow Posted February 9, 2014 Report Share Posted February 9, 2014 (edited) Double post Edited February 9, 2014 by powpow Link to comment Share on other sites More sharing options...
PowPow Posted February 9, 2014 Report Share Posted February 9, 2014 My daughter took lyrica (similar to gabapentin). It helped with severe nerve pain. The lyrica helped with a few doses. She had scratched through skin in effort to calm her nerve irritation. Why do they think he cannot stand or walk? Link to comment Share on other sites More sharing options...
Rachel Posted February 9, 2014 Author Report Share Posted February 9, 2014 Whenever my son tries to stand up, the tremors get worse. We do not know what is causing the tremors. I questioned the doctor about this because I was wondering if it had something to do with the high norepinephrine levels. The doctor said he did not know but would check into this and see what could be done. My son has been on gabapentin and Lyrica before. We had a really bad experience with gabapentine. His dosage was being raised every 3-4 days and he began to get weaker and weaker the higher the dosage. He became so weak the he could not sit up without help. It was like he lost muscle control. It was horrible. We have video's of all this. We had to rent a body lift to get him from room to room. He could not even use a wheel chair. I suspect this medication messed up his brain signeling. I am not willing to put my son back on this prescription. He has also tried Lyrica and was on it for 6 months. I saw no improvement with symptoms and my son could not tell any difference. He gained weight on this medication. Link to comment Share on other sites More sharing options...
DebC Posted February 10, 2014 Report Share Posted February 10, 2014 Our daughter also had the Genova and Pharmesan tests done here in TX. Once we started supplementing for her deficiencies along with the antibiotic she'd been on for over a year, we saw improvment quite rapidly. We have had our whole family tested through our daughter's doctor for mycoplasma and strep. My husband and I both had high mycoplasma titers and were on antibiotic for 30 days in June of this past year. Our son developed PANDAS symptoms this fall after we had strep and what we thought was a cold that my husband came home with and gave to me as well. It turns out that it was a mycoplasma infection and once we both started on another 30 days of antibiotics, we have seen improvement in our son who had extremely elevated titers. In our experience, getting the whole family tested is important in ending the cycle in the family. I have battled strep over the last couple of years but my titers remain low and our doctor does not think that I'm in a carrier state. Link to comment Share on other sites More sharing options...
Dedee Posted February 10, 2014 Report Share Posted February 10, 2014 (edited) 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 Edited February 10, 2014 by dedee Link to comment Share on other sites More sharing options...
Dedee Posted February 10, 2014 Report Share Posted February 10, 2014 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? Link to comment Share on other sites More sharing options...
Mommy2MCL Posted February 10, 2014 Report Share Posted February 10, 2014 @dedee- Not meant to hijack... But will you message me an email address. I had tried to pm you and it was full. We are dealing with Myco P too. We were just started on combo Zith and Augmentin and we have seen a world of difference. I keep hearing about the Lyme but we are in Texas and have no idea where to start. Good luck with your son. Link to comment Share on other sites More sharing options...
3bmom Posted February 10, 2014 Report Share Posted February 10, 2014 We had improvement when treating everyone in the family. Our Dr treats any titers over 4x normal. Changing diet was amazing too. http://latitudes.org/forums/index.php?showtopic=20967&p=170819 This is a post from the OCD and Autism forum. Changes in the gut are creating dysfunction in our immune system. Research in other countries are correlating this with changes in our food supply. Our pesticides and GMO food are antibiotics killing gut bacteria that is responsible for our health. We have had huge improvement in going organic, dairy and wheat free. Link to comment Share on other sites More sharing options...
Rachel Posted February 10, 2014 Author Report Share Posted February 10, 2014 DeDee I would like to pm but box is full. Link to comment Share on other sites More sharing options...
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