chubbermommy Posted February 28, 2014 Report Share Posted February 28, 2014 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! bjberglund 1 Link to comment Share on other sites More sharing options...
smartyjones Posted February 28, 2014 Report Share Posted February 28, 2014 I get quite confused with the glutamate/glutamine discussions. I think momwithocdson has a good handle on the distinctions. I only know from personal experience -- I myself love GABA. but not too much -- I take source naturals 125 mg. no more than 2. I have also taken natural factors pharma - that's more expensive. I seemed to be irritable on solgar 500mg. I don't take it daily -- generally before things like - speaking to ds's teachers, public speaking, if feeling crabby, etc. ds9 had a paradoxical reaction to gaba. pharma seemed to have no reaction -- solgar was terrible -- hyper, irritable and obnoxious. we tried it 2 times. the first, I thought it could be a reaction. the second, in about 1/2 hour, dh was saying, "WHAT did you give him?!" our doc said, yep, it's not so common but some people do have a negative reaction, but that's enough for me -- don't try it again. Link to comment Share on other sites More sharing options...
3bmom Posted February 28, 2014 Report Share Posted February 28, 2014 I am confused too! Dr. Amy Lasko talks about too much glutamate in the brain causing issues mostly from fast food andjunk food. I confess I have'nt read part 2 yet. Is there a difference with supplements? Does it tie in with our genetics? I know I am getting closer to doing "23 and Me". It just looks like such a big hill. Link to comment Share on other sites More sharing options...
Rachel Posted February 28, 2014 Report Share Posted February 28, 2014 (edited) I have not found to much success with GABA itself. I have been using this with my son for almost 3 weeks. It makes him really tired so I have started using it only at night with Taurine. Still waiting on True Calm to arrive through mail. I have started using a low dosage of Taurine with my son. Taurine will raise GABA and does lots of other things. There is documented research on Taurine. I like the effect it's having on my son. Taurine is also supposed to deregulate CaM Kinese. I'll try finding my research. CaM Kinese will elevate Glutamate and Norephinephrine levels. I'm hoping I'm knocking down CaM Kinese levels and raising GABA. Taurine will act on it's own and does not need other amino acids but does need B-6. Taurine will also help regulate electrolyte levels, which is a big help with my son's other medical issues. It's like rowingmom said, sometimes you just have to try other things when you run out of options ( testing and money). Start low and go Slow with any natural supplement. Rachel Edited February 28, 2014 by rachel Link to comment Share on other sites More sharing options...
3bmom Posted February 28, 2014 Report Share Posted February 28, 2014 There is a great post back around Feb 10 Tried to transfer but I don't think I was successful. #1 Lowering Glutamate Update: post #1 fcefxer Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted February 28, 2014 Report Share Posted February 28, 2014 I don't know a lot, but I know enough to be dangerous! Glutamate is a vital and necessary neurotransmitter; we all have it, and we all need it. What's unhelpful and potentially disruptive is the "extracellular" glutamate, that glutamate that cannot be successfully uptaken and/or absorbed because it's just too much for the receptors to handle. I'm not sure if it was Yasko or someone else, but from some source I got the understanding that what can happen (or what they THINK can happen . . . it's still emerging science) over time is that too much extracellular glutamate can sort of "burn out" or fry receptors and make them unreliable. In terms of what helps with glutamate modulation, and the extent to which one needs that help, and the right supplement or medication for achieving it . . . I think that's truly tied up in the whole methylation cycle and where, if anywhere, your kid's make-up and/or mutations put a kink in the cycle. For instance, n-acetylcystein (NAC) works very well for my DS as a glutamate modulator; however, some kids (like LLM's DD) do not respond well at all to it. But my DS is definitely an under-methylator, while her DD is more accurately described (as I recall -- she might need to chime in here and correct me) as an over-methylator. LLM is so much better versed in all the methylation stuff, I hesitate to go any further on this particular piece, because I will certainly get too much of it wrong! Like everything else, this is just a component of a complex puzzle, and taking anything out of context can potentially set of a ripple effect you weren't anticipating. There are multiple threads here over the last year or so discussing glutamate, methylation, NAC and all manner of connected issues. So I would do some research and take any course you choose sort of low and slow. Observe and see what happens, and then move forward accordingly. 3bmom 1 Link to comment Share on other sites More sharing options...
Rachel Posted February 28, 2014 Report Share Posted February 28, 2014 You are right Nancy. Low and Slow. If it were not for my son's last testing, I and the doctor would have not figured out that this was part of his problem. This doctor has mentioned the possibility of ALS but my son has tested negative for this. My son has some tremor problems and the doctor thinks the high glutamate levels may be the cause. I am hoping it is reversible and that my ds will not lose his physical mobility. Link to comment Share on other sites More sharing options...
chubbermommy Posted February 28, 2014 Author Report Share Posted February 28, 2014 Wow, lots to consider. I am hesitant to try out anything really, without doing lots of research and then consulting people here. Low and slow! Link to comment Share on other sites More sharing options...
3bmom Posted February 28, 2014 Report Share Posted February 28, 2014 Thanks for all the info. I am guessing excess glutamate outside the cell may be from glutamate additives in processed food that causes cravings and dysregulation. I will keep reading. You guys are amazing. Link to comment Share on other sites More sharing options...
Rachel Posted February 28, 2014 Report Share Posted February 28, 2014 This is another article that really caught my attention on Glutamate and how to lower it naturally. Some of you are already doing some of these things but some other supplements have been mentioned. I have decided to try the supplements first before I go gluten free with my son. http://www.rlcure.com/glutamate2.html Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted March 1, 2014 Report Share Posted March 1, 2014 Rachel -- There's another recent thread here about seizures and PANDAS and whether or not there's any tie-in, etc. And now you mention "tremors" which, in terms of brain activity and/or dysfunction, seemingly could be a related topic? Is this all unregulated glutamate at work? I don't know. What I can say about those particular pieces, however, is that there are some of us on this forum (not me) who's kids, through EEG, have been determined as having some form of seizure "disorder" even though the seizures are not perceptible beyond the EEG. At least one of these kids was prescribed an anti-seizure medication called lamictal (generic lamotrigine), which is also identified as a glutamate modulator. Meanwhile, my DS (no diagnosed seizure disorder) was prescribed low-dose lamictal by our psych because of its glutamate-modulating properties. Taking it was a turning point for him in his PANDAS healing trajectory. It wasn't an instant "cure" by any means, but it quelled his overly-strong emotional reaction to his anxiety/OCD and almost instantly made him more rational, more capable of being objective and working through his fears, rather than succumbing to them. I can't help but think there's a relationship there . . . . Link to comment Share on other sites More sharing options...
LNN Posted March 1, 2014 Report Share Posted March 1, 2014 Nancy, My DD is an undermethylator like your son. But she doesn't do well on NAC because she has a mutation on her CBS gene (as do I) and we can't tolerate supplements high in sulfur - our bodies don't do a good job neutralizing the bad effects of excess sulfates. So NAC makes her a mess because of her CBS mutation, not because of her general methylation status and not (necessarily) due to any relationship with glutamate (there might be one, I'm just not aware of it) . I took NAC for a few months last winter for a cough (NAC thins mucus) and it seriously elevated my liver enzymes, I stopped the NAC, rechecked the liver 4 weeks later and my ALT and AST had dropped from the 80s down to the 20s (above 50s is a concern). So as you've said, NAC helps some but if you have a CBS mutation, I'd stayaway from it. Rachel - on tremors...my DD had tremors. An EEG came back normal and the dr looked at the video I took and suggested she was having anti-cholinergic reactions whenever she took cold meds, cough meds or antihistamines - all of which can block choline receptors. She tested deficient in choline and this, combined with taking meds that blocked choline receptors, was causing the tremors and also tachycardia (sometimes her heartbeat would race to 150 bpm even lying down in bed - and stay that way for 1-2 hrs). I stopped the zyrtec she used to take and started supplementing choline daily and the tremors went away. So just something else to consider... Link to comment Share on other sites More sharing options...
3bmom Posted March 1, 2014 Report Share Posted March 1, 2014 You guys are so amazing? Rachel your article today connected multiple dots for me! I am so excited! First the article from Sheila on the Home page about food allergy and Schizophrenia! That plus other posts this week in regards to glutamate explains the profound difference in behavior for my DS when we eliminated Dairy. The article on schizophrenia talks about wheat in the 50's. Wheat we grow now changed in the 60's to a shorter stalk that is more inflammatory. Now we spray it with pesticides so it dries faster. This pesticide chelates Magnesium and zinc the important vitamins to balance the glutamate. We also changed how we feed cows. They changed from an Omega 3 source to an Omega 6 source. As mentioned in the article Omega 3's are important for the foundation of neurotransmitters. I just learned this week that farm raised fish are fed corn changing their Omega 3 and 6 ratio. That corn is most likely a GMO corn further creating inflammation and chelation of vital nutrients. IDK maybe thats why some fish oil exacerbates our kids. Clean of mercury but not other things. In 1996 GMO soy and corn are introduced and now Round-Up with Glyphosate is sprayed both on the weeds and on the plant we eat. If you have watched "Genetic Roulette" all modern day health issues spike with this new increase in pesticide especially Autism. It makes sense to me because I always asked myself what happened between my older kids and my youngest born in 1998. I wondered before we got PANDAS since every boy in my carpool was a little quirky or impulsive more than being boys and boys I understand. This Spring the FDA approved HUGE amounts of Glyphosate to be sprayed because we created Superweeds. I went to a talk last week and I believe we are at a 300% increase. There has been no additional safety testing. The mom who spoke has a child who came down with Autism symptoms but is older. She tested his glyphosate levels in the urine and they were extremely high especially for a child. Another observation I used to joke about is what is in Panda Express Orange Chicken. Every time I took a carload of football players, (non-issues) to eat they unanimously asked for Orange Chicken. Can't believe it, the article answered that nagging question. I am not a BBB, Blood Brain Barrier expert but I have been lucky enough to listen to Dr. Dritan Angilleau (sp) and if all this excitement and imbalance of Glutamate and GABA is going on in the Brain I wonder if that is why our Brain Barrier Junctions can no longer hold back infections as he showed with the mice. That would make it doubly hard to help and diagnose our kids because with high inflammation we can have both Autoimmune Issues and infectious encephalitis, not to mention malnutrition, food sensitivities and a toxic body. A lot of rambling but for me and my journey I am excited to have a lot of questions answered. As a side note on the mention of Kava Kava could be harmful if you have a Fatty Liver, Round Up Glyphosate is being linked with an increase of Fatty Liver Disease in non-alcoholics. You or your kids may have an issue since this isn't usually tested until very sick. Be careful. Link to comment Share on other sites More sharing options...
chubbermommy Posted March 1, 2014 Author Report Share Posted March 1, 2014 Rachel, are you giving just taurine or magnesium taurate? DS gets a magnesium supplement (glycinate) but if he can get the Mg and the taurine together, maybe that would be beneficial. Let us know how the True Calm works out. Link to comment Share on other sites More sharing options...
Rachel Posted March 2, 2014 Report Share Posted March 2, 2014 (edited) LLM I have got to check out choline. I have never heard of it as a supplement. Will it raise or lower histamine levels in brain? My son does take Zertic in the morning and Singular at night. So I am wondering why he has the high histamine levels in the brain. Are histamine levels normally high when you have high glutamate, dopamine, and Norephinephrine levels in the brain? Anyone know? My son has had an EEG and it was normal. He has also had all the other test to check for seisures and they were normal also. Maybe it's time to take my son off Zertic and see what happens for a few days. I will be doing some more research on this topic. Chubbermommy My son is taking 250mg of Tarine and 200mg Magnesium Citrate together 3 times a day. An hour before breakfast, after lunch, and before bedtime. I have to make sure magnesium gets absorbed well before my ds takes the Bixan. Bixan can mess up electrolyte levels. However, I have been alternating water and gatorade to help with the balance. Before taking Bixan, I had to give my son 10 grames of salt tablets throughout the day. Since last Tuesday, I might be giving one gram of salt at night my son's has last dosage of blood pressure medications. My husband and I see this as major improvement. I had to call the company that I ordered the True Calm from because it never arrived this last week. So they sent it out on Friday and UPS it. I should get it Monday or Tuesday at the latest. I will only use this at night with my ds. GABA makes ds too tired in the morning, so he takes the Tauine and magnesium in the morning. His moods have really improved, more focused and more alive. My son was just tired all the time and had a hard time getting awake. However, once he gets up and gets dressed, he is alert and ready to start the day. Just another big change, that I hope is here to stay. Can't wait to get my son started on True Calm and see what it does. Momwithocdson I have not heard of this medication. I will do some investigating. Thanks for the information. I do think there is a connection but just cannot seem to find a doctor to find the connection. Still have more questions than answers but I am so thankful to have found this forum. I keep asking doctors questions and hoping I'll get them to think out of the box. Rachel Edited March 2, 2014 by rachel Link to comment Share on other sites More sharing options...
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