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Found 9 results

  1. Every time I try to discuss methylation with my DD's LLMD, he tells me not to worry about it b/c treating her lyme is the big focus. My gut tells me that I need to consider and address her methylation results, especially as we continue to detox during her lyme treatment. My DD is constantly in an emotionally restless state (we never know when we're going to have a good or bad day). Her tics, rages, and ability to be and feel " calm and present" wax and wane with her medical treatment. Here are my concerns re: her 23 and me results: Detoxification: CPOX4- GT (1/2) CYP1A1- CT (1/2) CYPD2D6- AG (1/2) GSTP1- AA (2/2) NAT2- AG (1/2) Neurotransmitters: COMT V158M & H62H +/+ DAOA- AA (2/2) GAD1- AA (2/2) MAO-A +/- Folate One-Carbon Metabolism/Methylation: CBS C699T +/+ CBS A360A -/- MTHFR C677T +/- BHMT-02 & 08 +/- Endocrine: VDR BSM & TAQ +/- I've done nutrahacker and tried to read (with many failed attempts) the Heartfixer document. I'm most concerned with her homozygous CBS, COMT, DAOA, and GAD1 (high glutamate/low gaba) mutations. I also can't figure out if she is an over/under methylator. I don't know what to make out of her detoxification mutations. When I showed the doctor her 23 and me results, he said to "watch out" for histamine??? I'd love any advice you have to point me in the right direction for how to interpret her results, recommended supplements and a treatment protocol.
  2. My new Pandas rabbit hole is glutamate. I've read the posts on here about it and some recent research. It makes sense that flares could be glutamate storms and that's why NSAIDs (Advil) as glutamate antagonists, can have such an immediate positive effect. We just ran genetic info through Nutrahacker and over and over it says to avoid MSG (glutamate) and to take NAC (as well as other things). Then I looked up glutamate and some interesting info: https://unblindmymind.org The biochemist Katherine Reid reverses her daughters autism with a glutamate-free diet. In some ways it seems like a very restrictive diet, but in the end if you eliminate processed/manufactured foods you can avoid glutamate (even the "natural and organic" foods can contain glutamate). Add glycophosate into the mix (Roundup-use of which has drastically increased in last decade) and it creates a perfect storm. Some have said that the reason a gluten-free diet may work for Pandas kids is really because it reduces glutamate. There is lots of info on glutamate and neuropsychiatric effects. These are just a couple: https://www.ncbi.nlm.nih.gov/pubmed/24636977 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4756530/ Can some experts chime in? Has anyone else done Nutrahacker (or other sites) and found info on MSG etc? How many Pandas kids have this? Would it make sense to try NAC? I've heard some people have a very bad reaction to it.
  3. Great eight-minute video of Dr. Stephanie Seneff of MIT discussing the connections between autism, vaccines, GMO's, pestisides, glutamate, sleep disorders, Tylenol, brain swelling, blood/brain barrier, etc. Very relevant to PANDAS/PANS as well. https://www.youtube.com/watch?v=o3P6wVUH0pc&feature=youtu.be
  4. 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
  5. 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
  6. I came across this while researching some other things and thought it was really interesting and potentially helpful for some of our families, plus Psychology Today is relatively "easy" reading, compared to some of the journals and papers we find ourselves combing through! http://www.psychologytoday.com/blog/evolutionary-psychiatry/201104/your-brain-ketones
  7. So after reading llm's post about the antibiotic that can remove excess glutamate, I am even more confused about the whole glutamate/GABA thing. I had been thinking about GABA supplements for DS because GABA is calming and his PANDAS symptoms are fairly large/prolonged motor tics and vocal tics. But now I have read that GABA and glutamate and glutamine all get converted to one another, so giving a GABA supplement wouldn't do much if it just gets converted into glutamate anyway?? Is it better to try l-theanine instead? I have read that it gets converted into calming substances such as GABA. I'm interested to hear if anyone has tried these, with success or not. Thanks!
  8. Well, I am going to post on this forum, an article I am going to reference mentions autism, please no one get offended. My topic is OCD, which is the predominant symptom of PANS. Wish it was all cut and dry: Do A, B, C, D, and it's fixed. It has not been like that for us, and others here, so perhaps this might help someone. I found a paper written by Amy Yasko from 2002 (!) that references OCD, inflammation, strep infections, and mainly, excessive glutamate in the brain - addictive behavior, and OCD seems like addictive behavior to me. I won't begin to try and give a synopsis on a Yasko paper ;-) http://www.dramyyasko.com/wp-content/uploads/2011/08/The-Role-of-Excitotoxins-in-Autistic-Type-Behavior.pdf Here is a paper on excess glutamate and OCD written in 2012 from the International OCD foundation: http://www.ocfoundation.org/glutamate.aspx And, a list of high MSG/endotoxins foods that release glutamate: http://www.msgtruth.org/avoid.htm Ibuprofen is known to suppress glutamate. So, on a personal note: this completely fits my kid. NAC/n- acetylcystine modulates excess glutamate- several recent studies, especially for Trichotillomania supression- I realized my dd has been chewing Trident gum excessively all summer, like all day (aspartame) other high foods on the list - she started skin picking for the first time- PharmaNac stopped it. Then I stopped giving it. Then, she picked up Impetigo on her face- back to antibiotics- OCD has been ramping up all summer- bought some more NAC, going to supp vitamin K, she has always done well with taurine, threw out the gum! (yes, I know about Spry) I've tried to supp GABA in the past- disaster - so it's not as easy as that to re-balance. We do not have CBS or sulfur MTHFR- Anyway, find this all interesting- maybe it might apply to someone else for help.
  9. Someone here mentioned that lamictal is helpful for ocd in pandas b/c it reduces glutamate. The more I read about this, the more fascinated and excited I get b/c of the overwhelming evidence to support this. The government is doing clinical trials now with the ALS drug: riluzole (http://clinicaltrials.gov/show/nct00523718) in the treatment or augmentation of ocd. They say 70% respond to ssri's and CBT, but the other 30% don't and that there has been successes with the glutamate reducers in the reamining 30 percenters (which would include me; I've tried most of the ssri's, maoi's, antipsychotics, and tricyclics with no benefit at all with ocd and very little benefit in depression). I've never tried lamictal and this seems like an interesting topic to bring up with my psych. tomorrow. I was just wondering if anyone else here had success in treating ocd and if they had tried any of the other ALS drugs? Thanks P.S. Excuse any mistakes I may have typed out or included in my information, I am very very sleep deprived day in and day out and I deal with an incredibly insane amount of fatigue and excessive daytime sleepiness. Reading is very very difficult for me as is retaining information.
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