Rachel

I went ahead and did the second part of the test results. It goes through all the snp mutations and is worth every penny. My son needs 2 different forms of B-12. He does have 2 CBS mutations +/- but only 1 of the 2 varations which still makes it a priority but not as severe. I will be double checking this with some other sources and may be adding a few more supplements with doctor approval. Thanks to LLM information on the 23 and Me, I do have my son started on the right supplements. However doing this was more helpful because if reconfirmed what supplements I was already giving was right thing to do.

The Nutrahacker gives some results free of charge. I'm impressed with the first set of results and plan to do the next step to see what forms of B and other vitamins needed. The print out tells you the catagory(which includes detoxification, Folate 1, Energy, Neurotransmitter, HPA axis), gene, gene risk, gene frequency, gene function,consequences, encouraged to use and what to avoid. My son needs B vitamins and NAC is recomended several times for detoxification. There is a cost to the next set of results. It's $37 and for drug interactions it's $50.

Hi Nancy, Here is an article that you might want to look at. It pertains to CBS Gene Mutations and Gluathione. I am going to send this information to my doctor to see if some additional testing can be done. http://metabolichealing.com/metabolic-gateways-cbs-gene-mutations-glutathione/

Here is a blog that is loaded with a few more websites and helpful things to help interpret your results. Has anyone used the Nutrahacker site to see if they are on track with the right supplements? I am thinking about entering my son's results. http://www.stopthethyroidmadness.com/mthfr/ Here are a few more articles that explain Sam-E. The last article discuess Sam-e and histamine. http://ajcn.nutrition.org/content/76/5/1151S.full http://thyroid.about.com/od/MTHFR-Gene-Mutations-and-Polymorphisms/fl/The-Link-Between-MTHFR-Gene-Mutations-and-Disease-Including-Thyroid-Health.htm

Anyone fasting? I thought this was an interesting article. This would drop the high histmaine levels down. Does anyone do fasting with their children? http://www.sciencedaily.com/releases/2014/06/140605141507.htm

Here is another article on methylation and histamine. http://www.enzymestuff.com/methylation.htm

Has anyone had this testing done? I was looking for a test to check SAH levels and SAM-E levels but I'm not sure if this could be done since my son is still doing PEX. Is this the only test used to check for SAH and SAM-E? https://www.doctorsdata.com/methylation-profile-plasma/

Thanks LLM My son just had his ALT and AST testing done. They were in the low range but I will talk to our doctor about the NAC. I suspect my son may be an undermethylator because his histmaine levels were high on a test. However, I want to see if I can get the blood test done. My son will see his doctor next week. I will ask about the SAH because I read about that today. My son is still stuck with the tremors when he is sitting and they get worse if he tries to do exercise. He is still not able to stand or walk yet. However, his headache pain level is lower since starting the Namenda. So our doctor does suspect the glutamate and NMDA receptors NR2) are involved in this part of his condition. Our doctor also told us that he thought the tremors would be the last symptom to go. All I know is that high CamKinese, glutamate, norephrinphrine, and histamine levels can cause this sympton. I guess I'm getting inpatient and just want this symptom to go away. The PEX seems to be cleaning out his system and he has not had any infections. We cannot retest for anything until my son is done with the pex treatment for at least three months.

Is Neuroprotek a prescription?

This is an old post with some information on histamine and methylation. http://latitudes.org/forums/index.php?showtopic=837

Does anyone use SAM-E? I have read several articles that this might be helpful to my son's condition but I am having a hard time figuring if it is needed. My son has done the 23 and Me testing and I have been adding the supplements slowly. I thought maybe if I shared the results someone might could share their experience or possible send research that would shed some light on this. I have the heartfixer document and have looked at chapter 2 in Dr. Amy's. She states that Sam- e helps balance neurotransmitters. According to neuro testing, he does have problems in this area. He has high glutamate, dopamine, Norephrinphrine, Glycine,Histamine, and low GABA and Epinephrine. His serotonin, taurine, and PEA is in range. Here are the results. My son is taking M-B12, methylfolate, P5P, AL Carnitine, NAC and B complex. I am considering adding Sam-E and possilbly TMG. I am checking sulfite levels and have that issue under control. I feel like something is still missing. My doctor double checks all my research and has the final word on supplements that are used. Any shared experiences or research would be appreciated. COMT -/- BHMT+/- VDR +/- SULT-/- ACAT-/- MTRR+/+ CBS+/- GAD+/- MTHFR +/- MAO+/+ NOS+/+

Hi Cara Glad to hear your son is doing better. After reading your post, I decided to order this for my son to see if it would help with his leg tremors. According to a neuro transmitters test he does have high Histamine levels. Like you, I know this can be connected to mast cell but have not been able to have the testing done.

If your child is having chronic pain, you might want to check out these articles. The first article I found this weekend and just sent it on to our doctor. The other articles I sent last week and they got our doctors attention. I got a personal phone call from him on Friday. He wanted to run the NR2 subunits NMDA receptors testing. The research is out but the testing is still in research. So the the testing cannot be done. Our doctor called in the 7mg extended release Namenda prescription to be given at a higher dosage. My son was started on the Namenda(memantine) 5 mg pills back in November and it was not until December that he noticed his headache pain levels had dropped some. According to some of the research, it can take up to 6 months for this medication to help. It helps regulate NMDA receptors but according to Wiki it also helps regulate dopamine receptors. http://www.uic.edu/labs/wanglab/PDF/tfp2.pdf http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3113704/ http://paperity.org/p/4445327/targeting-the-nmda-receptor-subunit-nr2b-for-the-treatment-of-neuropathic-pain

Hang in there. My son is 14 and has not been in a public school for 3 years. He does online schooling and does play on the computer and X-box online with other kids. He does have at least some social life. Due to his current treatment, he cannot be out in crowds. However, he was not out in crowds before he started treatment because he would catch virues and infections so easily. Please don't feel bad if you must do this situation for your child. For my son, home schooling was the best choice.

Hi Ophelia, Did your doctor tell you when to take the NAC? My son only takes the NAC with breakfast and lunch. Our doctor told us it would stimulate the cells and give him more energy during the daytime so he could stay awake during the day time and sleep better at night. This supplements helps some patients get back into a regular sleep cycle along with other benefits. My son started with a low dosage and built up to a higher dosage. Taking it during the day helps with energy levels. However, it sounds like you are very sensitive to it. If you decide to start it back up, I would look for a lower dosage and don't take it after the evening meal. Taking it after the evening meal was too much for my son. It's good to hear but very sad to know that your inflammation showed up on a brain scan. I am assumng that you may have had some scans before and nothing showed up.If no scans were done before now that's no big deal either. I am just happy that you and your doctor at least know what the health condition is and maybe he can figure out a way to get you the treatment that is needed. Even though you do not have insurance, I belive it is still possible for you to get treatment. Have you filed for disability? Due to this medical condition, you should be able to and this may help you get access to other medcal help in the state you live in. I don't no much about filing for disability or state laws but please check into this.

How long have you been doing your treatment? What symptoms are you dealing with? My son has been doing PEX since last August. Seeing small changes. Immune wise, he is staying well. He has not had any infections. Does the Namenda help with pain?

If you are dealing with any pain issues, these 2 research papers may be of some help. My son was tested for NR 1 subset in November and it was negative. I have requested testing for the NR 2 subset. Had no idea that it could cause allodynia. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3113704/ http://paperity.org/p/4445327/targeting-the-nmda-receptor-subunit-nr2b-for-the-treatment-of-neuropathic-pain

This is really good overview on Autoimmune Encephalities. My son was checked for the NR 1 receptor for NMDAR encephalities in November but it came back negative. However, I still think my son has a form of encephalities because of his high glutemate levels. So I am going to see if our doctor will check for GABA receptors that affect the levels of glutamate. There is lots of information in this article. This doctor talks about different things that can cause encephalities. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2044.ashx

Here is a resource on AE that's very informative. There are several different kinds but thought this might be helpful to you. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2044.ashx Hope you have been able to get in touch with your doctor.

Hang in there. I know this is tough for you and any care givers that may be trying to help you through this. My son did not repond to the IVIG either. Twelve years is a long time to be fighting a chronic illness. My son is 14 and has had some of his symptoms since he was seven. May I ask, how you were checked for AE and is this the same as NMDAR encephalities? The reason why I ask is because an immunologist diagnosised my son with unspecific encephalities. I think his diagnosis was based on high Glutamate levels that showed up on my son's testing. My son does have a daily headache with scalp pain. One of the things I have learned through research is that the NMDAR receptors regulate glutamate. Magnisum and NAC are supplements that help regulate glutamate and the NMDAR receptors. Those articles are in the headache post, I made earlier. I have to be careful with type of magneisum supplements that I give my son. Epsom salt foot soaks seem to work the best and don't upset his system. It's a cheap way of getting in magnesium. The NAC will boost the immune system. Just wanted to share these 2 supplements with you and tell you to fight for your health needs. Hope you are able to see your doctor soon, so he can get you on a treatment plan that will help the AE symptoms.

My son is 14 and has had some of his symptoms since he was 7 years old. Through reseach I have learned what high levels of CamKinese can do. However, the doctor and I have know idea how long my son has had these high levels of CamKnese and if his condition is reversible.

Cam Kinese can also affect NMDAR receptors and these receptors regulate glutamate. In the post I made earlier, I posted some of those articles. I will go back and recheck. My son is diagnosised with Postural Orthostatic Tachycardia Syndrome. He tested positive for high Cam Kinese levels in 2013. He is under the care of a cardiologist and has been doing PEX treatments since last August. From what research I have read, Magnesium and NAC helps regulate glutamate and the NMDAR receptors. My son takes both of these supplements. His neurotransmitter glutamate levels were high but he has had the antibody test for celiac. The test was negative. So our doctor is thinking the high Cam Kinese is causing this problem. My son tried a gluten free and dairy free diet this last summer. It did not help any of his symptoms.

Here is one more article about the human nervous system. It explains what regulates the system. http://themedicalbiochemistrypage.org/nerves.php

My son has had a daily persistant headache since January 2011. A headache specialist diagnosed this several years ago. There was a 3 month time period when my son's headache was totally gone and his allodynia was almost gone. My son was on 1000mg of magnesium and high dosages of B vitamins. During this 3 month period (October -December 2012), he was also able to stand and walk for about 10 minutes before his walking tremor would start. At this time, his cardiologist thought the medications for POTS were kicking in and that my son was on his way back to a normal functioning life. However, flu, strep, mycoplasma infections, and ear infections sent him spiraling downhill in 2013. It was not until later that year, that an immunologist ran testing that indicated my son had past strep and mycoplasma infections without showing symptoms or fevers. It's hard to treat infections when child will not spike a fever and the doctor wants to only run rapid strep test. I always request a culture test now and refuse antibiotics until proven positive. The Cunningham test was also ran in August 2013 and October 2013. The first time results indicated unlikly but the symptoms my son was having could not be denied by anyone. Keep in mind my sons symptoms did not happen over night but kept getting worse after infections since December 2010. In October 2013, my son had a double ear infection and his symptoms went through the roof. He was also on an antibiotics for his ear infection. The Cunningham Panel was ran again and showed Highly Likely, My sons D1,Tublin, and Cam Kinese was very high. Another important test that my son had was a neurotransmitter test that showed high glutamate and norephrinphrine levels So what does all this have to do with a Daily Persistant Headache/allodynia and POTS. The antibodies measured on the Cunningham Panel affect the human nervous system. Cam Kinese seems to be a major player because it affects glutamate, NMDAR receptors, and the heart organ. About a month ago, my son was started on Nemenda to see if it would help with his headache and pain levels. Instead of his headache level at an 8, it has dropped down to a 7. So our doctor has called in the higher dosage that was used in a study. Through research I have also learned that Magnesium and NAC help regulate Glutamate and the NMDAR receptors. Here are some articles that have been helpful in figuring some of this out. Maybe these articles can be of help to someone else. BTW the best test for magnesium is the RBC magnesiunm test. It's very accurate and can be order without a doctor's order. Here are the articles. http://news.vanderbilt.edu/2013/10/magnesium-impacts-vitamin-d-status/ http://www.biomedcentral.com/content/pdf/1741-7015-11-187.pdf http://www.nature.com/ejcn/journal/v57/n10/full/1601689a.html http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318689/ http://pharmrev.aspetjournals.org/content/63/1/35.full http://toxsci.oxfordjournals.org/content/68/1/9.full http://www.psychiatryadvisor.com/magnesium-an-essential-supplement-for-psychiatric-patients/article/362253/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044191/ http://www.jneurosci.org/content/26/17/4690.full http://gotmag.org/how-to-restore-magnesium/ http://gotmag.org/vitamin-d-deficiency-mg-deficiency-period/ http://www.rsds.org/pdfsall/Sinis_Birbaumer_Gustin.pdf

Just thought it was time to give an up date on my son. My son has been doing plasma exchange since August of 2014. He started out with 3 treatments a week for 3 weeks and then went down to treatments 2 treatments. We saw some progress but when he went down to 2 treatments, he started going backwards again. Our doctor quickly bumped him up to 3 treatments a week again for 11 weeks. We stayed at the Ronald McDonald house to avoid traveling 3 days a week. A one way trip to the hospital was 150 miles. Since doing this treatment my son has not had any strep or mycoplasma pneumonia bacteria infections, he does not have a horse voice every day, he has gained strenght and stamina, decrease in vocal tics, he is just beginning to do some exercises without his tremors being made worse, his tremors have slowly lessened, my son has finally started sleeping through the night, his headache pain level has also dropped down. It has been a long 5 months but I am beginning to see some changes. He has not been rechecked for the antibodies that were found so high in the Cunningham test. Eventually that will be done but can only be done when treatment has been stopped for 3 months. Our cardilogist has also put my son on Planquenil to see if it will help keep these antibodies supressed since my son when down to 2 treatments the month of December. So far so so good.He is stable. My cardiologist has went back and reviewed some of my son's neurotransmitter testing. His glutamate and norephinphrine levels were very high but his GABA was very low. Because his headache and mechanical allodynia has not responded very well to pex, he decided to try him on Nemanda. His headache pain level dropped some after being on it for a month. My son stayed on that dosage for 2 months and he will go up to the full dosage on extended release to see if this can get any better. There was a small study on this medication that indicated the patients had relief from their headache and allodynia after 2 months use on the extended release dosage. Our doctor has also put my son on a high doseages of NAC and his magneisum supplement levels have gradually been raised due to a vitamin D defiencey. My son is much better off than he was 5 months ago. However, our progress is slow but our doctor has warned us this is a marathone of a cure and not a sprint. Plamsa exchange does cause problems with mineral inbalances and we are having to increase some supplements. Overall, I am pleased with my son's progress but healing cannot come quick enough since he has been sick with some of these symptoms since first grade. Wishing everyone a Happy New year and a Healing Year for your Child.