Rachel

I finally got my son's 23 and me test results back. First of all, thanks LLM for your post for 23 and ME. This has helped so much. The genes that showed up really do influence the symptoms that my son is having. I will be sharing these results with the cardiologist because he will be open to this. He will be more than willing to do testing to check for sulfite and ammonia levels in the body. My son did not have any SHMT or ACAT, However, he did have 4 hetrozygous CBS genes show up and 4 Hetrozygous MTHFR genes. As for Homzygous genes, this showed up in MAO AR297R, MTRR A66G, NOS 3, CETP,MEFV,TNF, and RAD 50. I am ready to switch off some of these genes to see if I can get rid of some of these horrible symptoms. Of course I know that I will have to go slow and get the CBS problems corrected first. His illness and inflammation problems are beginning to make more sense. I have ordered urine test strips to check for sulfite levels. Has anyone found a home test kit to check for ammonia levels? I will be monitoring sulfites weekly and start working harder with my son's diet. I have decided to take out cow's milk first. Does anyone have a favorite milk subsitute and a easy way to lower sulfites. Wish I and everyone else on the forum had an "Easy Button" for all these immune related illness. Edit: My son also has 3 COMT genes that are -/-. My son needs methyl B-12. Gotta get his CBS corrected first or his body is not going to get what it needs to be able to function better. His body is very senstivity to pain and he is a slow metbolizer. He is +/+ for CYP2D6 S486T and +/- for CYP1A2 164A>C.

Brese That is great news and very encouraging. I know my son has a long ways to go with the healing. I will keep the IVIG treatment on my list. I know there is many pros and cons about this treatment.

So glad to hear this good news. My son is also home school due to immune issues. Still have a very longs ways to go with healing .Family and friends are very understnding. My son has not done any IVIG or PEX treatments yet but may in the future. WIshing you the best for healing and no more dark and loney days.

I am beginning to figure this out. I got back my son's 23 and Me test results yesterday. He has some CBS genes that are +/-. I have learned that high sulfates and ammonia could contribute to inflammation problems. His gene for Celiac is negative. A high protein diet can contribute to high sulfates and ammonia levels. This next week, I will be going dairy free with my son to see if this will help lower some of the sulfate levels.

Thank you so much for your responses. I may not have all the pieces to my son's illness. I have been looking back over all of his testing. If I wanted to do the Lyme testing through Ignex, .is there a certain test that can point to Lyme directly? My son has had this testing done through a spinal tap but I don't think it was done through this lab. It was negative. I just don't want to waste money doing testing that has already been done, but it still bothers me that this might be part of his problem. It there any certain test that would be specific about a tick problem? For 3 months, my son's headache and scalp pain were practically gone. Even his tremors were less and he was able to stand, walk and do physical therapy. He had made so much progress that his doctor and I thought he was on his way to recovery.This happened when my son was on a high protien shake with amino acids. When my son got a double whammy of flu, all these symptoms came back and he was still on this high protein amino acid shake. I think the flu missed up methylation pathways because I have never been able to get him back to his baseline before having the flu. I am waiting on the results of his 23 and Me testing. My son has been on the Choline for two weeks and tremors are still the same. I keep thinking that he may not be shaking as much as he was but it's really hard to tell. If his methylation pathways are missed up this may be the reason I cannot get him back to baseline. However, I still have to deal with these brain antibodies and Mycoplasma P. and? maybe Lyme? I just want a simple solution to this mess but I'm so glad I'm not the only one with a sick child. I wish I would have found this forum sooner but his brain antibodies were not discover until this last year. When this showed up, the cardiologist and I realized my son had more than just POTS. My son is still in the PANDAS study and the antibodies that affect the heart have also been found. My son is also in the POTS study at OU because they have found some specific receptors that have been found in POTS patients. Don't know how long it will be before I know if these are also present. Just wanted to bring you up to date on some other testing. The results of this other testing should be interesting.

I am asking this question because I am wondering how helpful IVIG or PEX could be? I'm also curious what types of symptoms that your child was experiencing before doing either one of these treatments. My son has memory issues, brain fog, vocal tics, daily headache, scalp pain, tremors, unable to stand. walk, or exercise due to tremors. I want to know if these symptoms can be caused by the brain antibodies that show up highly likely on the Cunningham Panel or could the Mycoplasma P be causing these or is it a combination of everything? I also want to know if either of these treatments can be done while your child is on an antibiotic because of a bacteral infection. I know some have had some success with these treatments and that it may take several treatments before results are seen. Just need to hear your good or bad experiences.

Here some more articles. This first one is a blog that really sparked my interest and I started looking to find more connections. I plan on bringing this virus up again with the doctor. I am more concerned because it is connected with mycoplasma. http://vlgonvalcyte.wordpress.com/tag/hhv-6/ http://www.jacobteitelbaum.com/health_articles_f-n/Infections-treating_hidden_viral_infections_cfs.html http://www.bjmp.org/content/role-chronic-bacterial-and-viral-infections-neurodegenerative-neurobehavioral-psychiatric-au http://www.redlabs.be/red-labs/our-science/viral-infections.php

Here are a couple of articles I found. Hope they are helpful http://www.endfatigue.com/book_notes/Fftf_chapter_5.html http://hhv-6foundation.org/associated-conditions/hhv-6-and-chronic-fatigue-syndrome

Hi Dedee, The same thing showed up on my son's panel. Our doctor is not treating for it but my son is on an antibiotic that covers several different viruses. I read an article by a CSF doctor that stated when the IgG showed up high and the IgM was normal, there was still a chance that the virus could be active or dormant in the cells. I think I can find the article and post it again if you would like to read it. Our doctor thinks this is going on with my son but he choose to tackle another bacteria with a higher IgG.

My son has been on antibiotics for 15 weeks. Back in December his Mycoplasma P IgG was 953. Today the same test, same lab indicates it has dropped to 865. Is this what I can expect to see if the antibotics are helping? His blood pressures are still staying up but not seeing improvement with other symptoms.

I have read through some old post and see comments that this is helping. How is Fish oil helping your son or daughter? What dosage is being used. Feel free to pm. My son takes fish oil but not at a high dosage. I tried increasing olive oil levels this last week in his diet and his pain levels and sensitivity levels went way up. So I have backed off. I have found some articles that indicate Fish oil is good for many things and will share what I find. Is there any research on how fish oil affects PANDAS/PANS. I am assuming it affects the brain antibodies, Maybe? I feel like I missed some good information somewhere along this route because of some of the aricles I have found. Any information would be appreciated. Here are some articles about fish oil that I found helpful but none are about treatment for PANDAS/PANS. On the last article you will need to click on MORE under Jacob Teitelbaum. This article does give a dosage. Does anyone use this much? http://www.lef.org/magazine/mag2012/sep2012_Fish-Oils-Health-Benefits_01.htm http://www.drperlmutter.com/grain-brain-seven-super-supplements/ http://www.sharecare.com/health/immune-lymphatic-system-disorders/natural-treatments-for-autoimmune-diseases

Your amino acids are involved in methylation pathway. I am waiting on my son's 23 and me results. However, I have found out the my son is very low on arginine. Arginine is needed for the Urea cycle. So I would think that treating underlying methylation issues would help speed up yout son's recovery time. BTW, how much Omega 3's is your son taking and how long did it take to see the improvement.

Thanks for posting this information. I should be getting my son's report within the next 2 weeks.

This is an interesting post. I have wondered about the same thing because I have also been going through my son's old medical records. I thought after the brain antibodies were found in my son, the doctors would diagnosis him with PANDAS. My son had a lot of ear and sinus infections when he was younger. He also had croup 2-3 times a year until the age of 11. MAYO called it spasmonic croup. My son came down with this during his week long appointments with MAYO in Rochester, MN. He was diagnosis with POTS was reconfirmed but it was good to get another doctor's view of croup. My son has not been diagnosied with PANDAS but has a diagnosis that our insurance will accept. In the USA, PANDAS is still not accepted as a medical diagnosis by many doctors either. Many insurance companies will also not provide medical coverage for this diagnosis. So having a diagnosis they will accept if you have insurance can be a blessing. My son is also on antibiotics. Are your doctors doing any blood work to see if the antibiotics are helping? My son has a high viral load of Mycoplasma P. He had a blood test a week ago but have not heard back on the results. He has only been on them for 16 weeks not nearly as long as your daughter. You mentioned she had strep. Are they rechecking those titers? That should give your doctors some answers about what the antibiotics are doing . As a parent I would also be scared about taking her off the antibiotics especially since they seem to be helping. If she gets sick after she is taken off, I would beg her doctors to checked the strep antibodies to see if they have came up. From reading about PANDAS, I understand this is one way to keep a check on this. I am very new to all of this so hopefully others on the forum can give some better advice. Wishing you the best and keep us posted on her recovery.

Keep sharing! I want to hear more. It's so encouraging.

An IEP protects your child's educational needs. Your child can have a reduced work load for assignments. In the state that I live in, a student must complete 80% of the curriculm or they cannot be passed on to the next grade. This was very helpful to know. My son's assignments have also been modified or shortened because of how his medical condition affects him. Instead of 20 math problems, he does 10. If he does not get the concept, then he does 10 the next day. Students with special needs do have educational rights and so do the parents. You may need to contact the special education director to get some help with this. Hopefully you will not have to go above their head. However, sometimes this is necessary in order to get your childs educational needs met.

Viruses can cause problems. My son takes the extended release clonidine and normally sleeps through the night. However, last night he woke up sick to his stomach. Which is not the norm for him. He is also on Bixan for Mycoplama P. but I have not seen major improvement in symptoms but no regression yet either. I'm glad that you posted this. Hope you will get some other answers because I have been wondering what signs to look for if the antibiotic does stop working.

This is so sad and my heart goes out to this family. My husband and I are determined to keep our son out of the hopital unless he is under our cardiologist care. We feel so fortunate that we had no problems when my son was in the hospital for the first time. What a mess!

I'm afraid to try the leaf because it has the tendancy to lower blood pressure. So far blood pressures are still staying up and my son has been able to go down to a lower dosage of Midodrine. Our cardioloist is impressed. I have ordered the Japanese knotweed and hoping my son can tolerate it.

I have been reading Buhner's Book on Healing Lyme Disease Coinfections. The section on Mycoplasma is great. I never knew realized what damage this horrible live bacteria could do to the body. So this mama is ready to go to war. My son has had a Genova testing done to analyze Omega 3,9,6 and saturated Fatty acids. My son is deficient in Omega 9's, Oleic, a-Linolenic , Arachidonic, and just barly in the range for Omega 6's. His AA/EPA is deficient also. I do give him fish oil but I know that these Omegas are not supposed to be mixed or they will cancel out each other. So do I need to alternate days when I give them to my son. Like MWF give fish oil and the other 4 days give Omega 9 and 6. Can Omega 9 and 6 be given together? Sorry for so many questions. Back to olive oil, Buhner recommends 2-3 ounces daily. I'm working towards that dosage with my son. I have actually found a drink to make up the olive oil and it hids the taste pretty well. Does Olive Oil help with Mycoplasma inflammation? I always thought that fish oil would help but my son cannot tell any difference with it. He has been on fish oil for at least 2 years. After reading Buhner's book, I'm totally convienced that we are dealing with Mycoplasma P. My son had testing on Monday to check for levels. Can't wait to get the results. Edit: One or two other questions. Does Olive Oil help the body detox? I add lemon to my son's water everyday. Should detoxing be done everyday when you are on an antibiotic? My son is on Bixan. So many questions, thanks in advance for any help.

My son's cardiologist has also told me that I could start my ds on the herbs. However I have to start only one at a time and on the very lowest dosage. I will have to go very slowly because of my son's heart and blood pressure problems. I just got my books this last Saturday and have started reading. I plan on starting my ds on the Japanese knotweed first to see if it will help with the brain inflammation.

POTS stands for Postural Orthostatic Tachycradia Syndrome. It does have to do with the heart rate and blood pressure. It can be brought on by several different things. My son had walking p, ten months before he was diagnoised with POTS. After the walking p., his symptoms kept progressing. My son got so bad that we had to take him to the hospital for a 10 day stay. Many test were ran and he was diagnosied with POTS after a positive Tilt Table Test. Here is a good reference article about POTS. It can explain it much better than I can put it into words. My son's POTS has been caused by a Mycoplasma P. and Mycoplasma P. can cause brain antibodies. http://www.dysautonomiainternational.org/page.php?ID=30

I decided to go through my son's testing again. I did not realize that my son had a Lyme AB IGM CSF, and Lyme AB IGG CSF testing. The testing was done at Cambridge Biomedical . Both test were negative. I knew my son had a spinal tap when he was in the hospital but I did not realize this testing had been done. Would Lyme should up in the CSF test if it was an old infection or new infection?

My son had this test. He was negative. So if we go gluten free, it will be just to give his immune system a boost.

Thank you so much for your post. My husband and I are keeping this in our back pocket. I have looked through my son's testing and his coinfections were negative. This testing was done through the same labs that your son had his coinfections done at. However, I do wonder about the western blot testing that was done because it wast done through Quest and some other labs, not Ignex. If my son does not improve on his current treatment plan within the next year, we have decided to request this testing through Ignex. ? My question is Do you also need to do the Lyme bands if nothing shows up on the Western Blot? My son has actually had the Western Blot done several times at different labs and it has always shown to be negative. Hope you get to feeling better soon. Chronic illness is so hard to deal with physically, emotionally and finacially. Keep us posted on your treatments.