Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Some weeks back, I tried ramping up our mito support and I got to B1 (benfotiamine) and i started ramping that up. Things had been going well up until the point where I increased her b1 to 150 mg and i began to notice something strange. At 100 mg, her words seemed to diminish. WTH??? I searched around for toxicity issues with b1 and it's not known to do this. I then i stopped it and she was back to where she was.I played this cat and mouse game with benfotiamine a few time and once i brought her benfotiamine level to 175 mg. WHY was this happening??? I did a quick search on the functions of B1 and something stuck out at me. B1 is responsible for the production of two primary neurotransmitters: acetylcholine and GABA. Long story short, I found a few sources that said that GABA " toxicity " results in several other symptoms but the one that stuck out was...numbness of the mouth! So I dug around some more and learned more about acetylcholine production and a little about how it's used and I learned a few interesting things that were relevant to our OAT profile: 1. Acetylcholine requires acetyl-coA to be produced. Acetyl-CoA is a product of....yep, leucine metabolism ( " the very next day, the cat came back, thought he was a goner but the cat came back cuz he couldn't stay away " started playing in my head when I read about it being a product of leucine). 2. In conditions of prolonged riboflavin deficiency, the mitochondrion will lose its ability to produce Acetyl CoA (this was a study done with lab rats) AND even if you start increasing riboflavin, you can't get it to start making Acetyl-CoA until you jumpstart the mitochondrion with ALCAR. Mistake #2 on my part, I didn't give enough ALCAR to jumpstart this (and it became obvious when I saw signs of too much GABA in her system when I gave higher doses of benfotiamine). Her system definitely needs B1 because her poops were just stellar, but it looked like her body wasn't metabolizing B1 to make acetylcholine and GABA in the right ratios. 3. Methlmercury interferes with the way acetylcholine is used because methylmercury binds to the choline acetyltransferase (the receptor for acetylcholine). I have 8 amalgam fillings and was quitting smoking at the time when i was pregnant with Maia and I chewed lots of Trident gum, never having an inkling at the time that i would release so much mercury in my body and why I felt nauseous and my mouth and gum tasted like metal. I also ate lots of cilantro while I was pregnant thinking it tasted so good and I was completely oblivious to the fact that it moves mercury. Just the metals in this equation alone is a quadruple-whammy! 4. The receptor for acetylcholine, choline acetyltransferase, also requires Acetyl-CoA to be made.5. A riboflavin deficiency will stop the production of glutathione and this will result in a broken detox system that isn't able to move out the trace mercury and other toxins in everything we eat, drink and touch. This means that mercury accumulated in the system while we had low riboflavin and the low riboflavin was a double whammy because it also stopped the production of Acetyl-CoA. Then something funky started to happen at almost 200 mg of benfotiamine. She started drooling again!!! I hadn't seen this happen since we removed soy from her diet. And while we're on the subject of my archnemesis, soy...could this be the reason why she has trouble with soy??? The phosphotidylcholine??? I have to find out more about this. I've been wanting to post this to tell you guys about it because it just all made so much sense to me...all her symptoms are related to this.I also had something odd come back from a spot urine test she did with the creatine study we participated in with Sick Kids Hospital's autism research...her creatine came back " borderline elevated " , possibly indicating a creatine transport problem, maybe? We're following up with a 24 hour urine sample and bloodwork, but something in my gut is telling me that this too is in some odd way related to this same problem, perhaps? Anyway, we've been seeing awesome gains in language. Receptive no longer needs to be worked on in therapy - our clinical therapist said that she is able to fully acquire receptive language in the natural environment now. With expressive language, there is still some verbal apraxia and some bits of the global apraxia left. I'm aggressively treating the mito problem caused by the riboflavin deficiency with 1200mg ALCAR, 500 mg l-carnitine, and 550 mg CoQ10, on top of the supps from before. I've also started chelating - This incident made me see that we will not fully restore the functioning of Acetylcholine until we take out the mercury. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Alberta,How did you discover the B2 deficiency?Thanks,Sent from my iPhone Some weeks back, I tried ramping up our mito support and I got to B1 (benfotiamine) and i started ramping that up. Things had been going well up until the point where I increased her b1 to 150 mg and i began to notice something strange. At 100 mg, her words seemed to diminish. WTH??? I searched around for toxicity issues with b1 and it's not known to do this. I then i stopped it and she was back to where she was.I played this cat and mouse game with benfotiamine a few time and once i brought her benfotiamine level to 175 mg. WHY was this happening??? I did a quick search on the functions of B1 and something stuck out at me. B1 is responsible for the production of two primary neurotransmitters: acetylcholine and GABA. Long story short, I found a few sources that said that GABA "toxicity" results in several other symptoms but the one that stuck out was...numbness of the mouth! So I dug around some more and learned more about acetylcholine production and a little about how it's used and I learned a few interesting things that were relevant to our OAT profile: 1. Acetylcholine requires acetyl-coA to be produced. Acetyl-CoA is a product of....yep, leucine metabolism ("the very next day, the cat came back, thought he was a goner but the cat came back cuz he couldn't stay away" started playing in my head when I read about it being a product of leucine). 2. In conditions of prolonged riboflavin deficiency, the mitochondrion will lose its ability to produce Acetyl CoA (this was a study done with lab rats) AND even if you start increasing riboflavin, you can't get it to start making Acetyl-CoA until you jumpstart the mitochondrion with ALCAR. Mistake #2 on my part, I didn't give enough ALCAR to jumpstart this (and it became obvious when I saw signs of too much GABA in her system when I gave higher doses of benfotiamine). Her system definitely needs B1 because her poops were just stellar, but it looked like her body wasn't metabolizing B1 to make acetylcholine and GABA in the right ratios. 3. Methlmercury interferes with the way acetylcholine is used because methylmercury binds to the choline acetyltransferase (the receptor for acetylcholine). I have 8 amalgam fillings and was quitting smoking at the time when i was pregnant with Maia and I chewed lots of Trident gum, never having an inkling at the time that i would release so much mercury in my body and why I felt nauseous and my mouth and gum tasted like metal. I also ate lots of cilantro while I was pregnant thinking it tasted so good and I was completely oblivious to the fact that it moves mercury. Just the metals in this equation alone is a quadruple-whammy! 4. The receptor for acetylcholine, choline acetyltransferase, also requires Acetyl-CoA to be made.5. A riboflavin deficiency will stop the production of glutathione and this will result in a broken detox system that isn't able to move out the trace mercury and other toxins in everything we eat, drink and touch. This means that mercury accumulated in the system while we had low riboflavin and the low riboflavin was a double whammy because it also stopped the production of Acetyl-CoA. Then something funky started to happen at almost 200 mg of benfotiamine. She started drooling again!!! I hadn't seen this happen since we removed soy from her diet. And while we're on the subject of my archnemesis, soy...could this be the reason why she has trouble with soy??? The phosphotidylcholine??? I have to find out more about this. I've been wanting to post this to tell you guys about it because it just all made so much sense to me...all her symptoms are related to this.I also had something odd come back from a spot urine test she did with the creatine study we participated in with Sick Kids Hospital's autism research...her creatine came back "borderline elevated", possibly indicating a creatine transport problem, maybe? We're following up with a 24 hour urine sample and bloodwork, but something in my gut is telling me that this too is in some odd way related to this same problem, perhaps? Anyway, we've been seeing awesome gains in language. Receptive no longer needs to be worked on in therapy - our clinical therapist said that she is able to fully acquire receptive language in the natural environment now. With expressive language, there is still some verbal apraxia and some bits of the global apraxia left. I'm aggressively treating the mito problem caused by the riboflavin deficiency with 1200mg ALCAR, 500 mg l-carnitine, and 550 mg CoQ10, on top of the supps from before. I've also started chelating - This incident made me see that we will not fully restore the functioning of Acetylcholine until we take out the mercury. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 WOW you are like a detective,hope you have found the missing link,I will have to read your post a few times to understand it all!!!Let your email find you with BlackBerry® from VodafoneSender: mb12valtrex Date: Tue, 3 Apr 2012 11:26:10 -0400To: Trying_Low_Oxalates<Trying_Low_Oxalates >; m12valtrex<mb12valtrex >ReplyTo: mb12valtrex Subject: Our curious incident with B1 and apraxia Some weeks back, I tried ramping up our mito support and I got to B1 (benfotiamine) and i started ramping that up. Things had been going well up until the point where I increased her b1 to 150 mg and i began to notice something strange. At 100 mg, her words seemed to diminish. WTH??? I searched around for toxicity issues with b1 and it's not known to do this.I then i stopped it and she was back to where she was.I played this cat and mouse game with benfotiamine a few time and once i brought her benfotiamine level to 175 mg. WHY was this happening???I did a quick search on the functions of B1 and something stuck out at me. B1 is responsible for the production of two primary neurotransmitters: acetylcholine and GABA. Long story short, I found a few sources that said that GABA " toxicity " results in several other symptoms but the one that stuck out was...numbness of the mouth!So I dug around some more and learned more about acetylcholine production and a little about how it's used and I learned a few interesting things that were relevant to our OAT profile:1. Acetylcholine requires acetyl-coA to be produced. Acetyl-CoA is a product of....yep, leucine metabolism ( " the very next day, the cat came back, thought he was a goner but the cat came back cuz he couldn't stay away " started playing in my head when I read about it being a product of leucine).2. In conditions of prolonged riboflavin deficiency, the mitochondrion will lose its ability to produce Acetyl CoA (this was a study done with lab rats) AND even if you start increasing riboflavin, you can't get it to start making Acetyl-CoA until you jumpstart the mitochondrion with ALCAR. Mistake #2 on my part, I didn't give enough ALCAR to jumpstart this (and it became obvious when I saw signs of too much GABA in her system when I gave higher doses of benfotiamine). Her system definitely needs B1 because her poops were just stellar, but it looked like her body wasn't metabolizing B1 to make acetylcholine and GABA in the right ratios. 3. Methlmercury interferes with the way acetylcholine is used because methylmercury binds to the choline acetyltransferase (the receptor for acetylcholine). I have 8 amalgam fillings and was quitting smoking at the time when i was pregnant with Maia and I chewed lots of Trident gum, never having an inkling at the time that i would release so much mercury in my body and why I felt nauseous and my mouth and gum tasted like metal. I also ate lots of cilantro while I was pregnant thinking it tasted so good and I was completely oblivious to the fact that it moves mercury. Just the metals in this equation alone is a quadruple-whammy! 4. The receptor for acetylcholine, choline acetyltransferase, also requires Acetyl-CoA to be made.5. A riboflavin deficiency will stop the production of glutathione and this will result in a broken detox system that isn't able to move out the trace mercury and other toxins in everything we eat, drink and touch. This means that mercury accumulated in the system while we had low riboflavin and the low riboflavin was a double whammy because it also stopped the production of Acetyl-CoA.Then something funky started to happen at almost 200 mg of benfotiamine. She started drooling again!!! I hadn't seen this happen since we removed soy from her diet. And while we're on the subject of my archnemesis, soy...could this be the reason why she has trouble with soy??? The phosphotidylcholine??? I have to find out more about this.I've been wanting to post this to tell you guys about it because it just all made so much sense to me...all her symptoms are related to this.I also had something odd come back from a spot urine test she did with the creatine study we participated in with Sick Kids Hospital's autism research...her creatine came back " borderline elevated " , possibly indicating a creatine transport problem, maybe? We're following up with a 24 hour urine sample and bloodwork, but something in my gut is telling me that this too is in some odd way related to this same problem, perhaps?Anyway, we've been seeing awesome gains in language. Receptive no longer needs to be worked on in therapy - our clinical therapist said that she is able to fully acquire receptive language in the natural environment now. With expressive language, there is still some verbal apraxia and some bits of the global apraxia left. I'm aggressively treating the mito problem caused by the riboflavin deficiency with 1200mg ALCAR, 500 mg l-carnitine, and 550 mg CoQ10, on top of the supps from before. I've also started chelating - This incident made me see that we will not fully restore the functioning of Acetylcholine until we take out the mercury. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 B2 deficiency showed up on her OAT as elevated glutaric acid. Alberta,How did you discover the B2 deficiency?Thanks,Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Gotcha, thanks! Was that in the results corrected for by ? I'll look at ours. Our son does very well on B2 & folapro but other B's are touch and go. We're running a second OAT right now.Thanks so much, Sent from my iPhone B2 deficiency showed up on her OAT as elevated glutaric acid. Alberta,How did you discover the B2 deficiency?Thanks,Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Thank you alberta!! My son and I both need more b2 as per our nutrevals so this is very interesting...i just started them on bcomplex transdermal bc they couldn't tolerate oral...also just got our yasko results and my son has a mutation that indicates he should avoid high b6...anyway, the transdermal seems to be tolerated ok at the moment but he does have his fingers in his mouth alot these days...i was thinking it was gut related bc we have been rotating the herbals (he is finally tolerating herbals somewhat)...but I am wondering if it could be what you describe below...unfortunately my son didn't seem to do well on alcar...thanks again for your post!!-- Sent from my Palm Pre Some weeks back, I tried ramping up our mito support and I got to B1 (benfotiamine) and i started ramping that up. Things had been going well up until the point where I increased her b1 to 150 mg and i began to notice something strange. At 100 mg, her words seemed to diminish. WTH??? I searched around for toxicity issues with b1 and it's not known to do this. I then i stopped it and she was back to where she was.I played this cat and mouse game with benfotiamine a few time and once i brought her benfotiamine level to 175 mg. WHY was this happening??? I did a quick search on the functions of B1 and something stuck out at me. B1 is responsible for the production of two primary neurotransmitters: acetylcholine and GABA. Long story short, I found a few sources that said that GABA "toxicity" results in several other symptoms but the one that stuck out was...numbness of the mouth! So I dug around some more and learned more about acetylcholine production and a little about how it's used and I learned a few interesting things that were relevant to our OAT profile: 1. Acetylcholine requires acetyl-coA to be produced. Acetyl-CoA is a product of....yep, leucine metabolism ("the very next day, the cat came back, thought he was a goner but the cat came back cuz he couldn't stay away" started playing in my head when I read about it being a product of leucine). 2. In conditions of prolonged riboflavin deficiency, the mitochondrion will lose its ability to produce Acetyl CoA (this was a study done with lab rats) AND even if you start increasing riboflavin, you can't get it to start making Acetyl-CoA until you jumpstart the mitochondrion with ALCAR. Mistake #2 on my part, I didn't give enough ALCAR to jumpstart this (and it became obvious when I saw signs of too much GABA in her system when I gave higher doses of benfotiamine). Her system definitely needs B1 because her poops were just stellar, but it looked like her body wasn't metabolizing B1 to make acetylcholine and GABA in the right ratios. 3. Methlmercury interferes with the way acetylcholine is used because methylmercury binds to the choline acetyltransferase (the receptor for acetylcholine). I have 8 amalgam fillings and was quitting smoking at the time when i was pregnant with Maia and I chewed lots of Trident gum, never having an inkling at the time that i would release so much mercury in my body and why I felt nauseous and my mouth and gum tasted like metal. I also ate lots of cilantro while I was pregnant thinking it tasted so good and I was completely oblivious to the fact that it moves mercury. Just the metals in this equation alone is a quadruple-whammy! 4. The receptor for acetylcholine, choline acetyltransferase, also requires Acetyl-CoA to be made.5. A riboflavin deficiency will stop the production of glutathione and this will result in a broken detox system that isn't able to move out the trace mercury and other toxins in everything we eat, drink and touch. This means that mercury accumulated in the system while we had low riboflavin and the low riboflavin was a double whammy because it also stopped the production of Acetyl-CoA. Then something funky started to happen at almost 200 mg of benfotiamine. She started drooling again!!! I hadn't seen this happen since we removed soy from her diet. And while we're on the subject of my archnemesis, soy...could this be the reason why she has trouble with soy??? The phosphotidylcholine??? I have to find out more about this. I've been wanting to post this to tell you guys about it because it just all made so much sense to me...all her symptoms are related to this.I also had something odd come back from a spot urine test she did with the creatine study we participated in with Sick Kids Hospital's autism research...her creatine came back "borderline elevated", possibly indicating a creatine transport problem, maybe? We're following up with a 24 hour urine sample and bloodwork, but something in my gut is telling me that this too is in some odd way related to this same problem, perhaps? Anyway, we've been seeing awesome gains in language. Receptive no longer needs to be worked on in therapy - our clinical therapist said that she is able to fully acquire receptive language in the natural environment now. With expressive language, there is still some verbal apraxia and some bits of the global apraxia left. I'm aggressively treating the mito problem caused by the riboflavin deficiency with 1200mg ALCAR, 500 mg l-carnitine, and 550 mg CoQ10, on top of the supps from before. I've also started chelating - This incident made me see that we will not fully restore the functioning of Acetylcholine until we take out the mercury. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 , no -- this value didn't even need adjustment from to show a B2 deficiency. This was high right off the OAT itself...I think it might have been even higher after we adjusted for creatinine. But it was a glaring deficiency that I didn't understand the significance of until only recently. I just gave a b-complex, thinking the b2 in it was enough, but it really wasn't and B2 (we did R5P) needed to be much higher than the other B's I was giving. We needed about 10 times as much as what was in our b-complex. > Gotcha, thanks! Was that in the results corrected for by ? I'll look at > ours. Our son does very well on B2 & folapro but other B's are touch and go. > We're running a second OAT right now. > > Thanks so much, > > > Sent from my iPhone > > > > B2 deficiency showed up on her OAT as elevated glutaric acid. > > > > > Alberta, > How did you discover the B2 deficiency? > Thanks, > > > Sent from my iPhone > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 , I thought that might be you who just posted on the Yasko forum about B6! We just got the results for our ASD son on Saturday and the results for one of my NT daughters today. Just to let you know, my son started mouthing/chewing something fierce awhile back. I didn't think it was yeast as he didn't have other yeast flare symptoms. I tried higher zinc, lower zinc, and tested for metal excretion because all these things were suggested to me. It was none of those things. I had suspected it might be a lack of B12 because we had removed it a little while beforehand. The chewing stopped when we started the Yasko A1298C caps, but he was still mouthing. Then we started him back on B12 (hydroxy) and have worked up to two drops per day and the mouthing is now gone. So for him, it was a lack within the methylation cycle. Maybe that will trigger an idea for you. Cathy > > Thank you alberta!! My son and I both need more b2 as per our nutrevals so this is very interesting...i just started them on bcomplex transdermal bc they couldn't tolerate oral...also just got our yasko results and my son has a mutation that indicates he should avoid high b6...anyway, the transdermal seems to be tolerated ok at the moment but he does have his fingers in his mouth alot these days...i was thinking it was gut related bc we have been rotating the herbals (he is finally tolerating herbals somewhat)...but I am wondering if it could be what you describe below...unfortunately my son didn't seem to do well on alcar...thanks again for your post!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 As beautiful as this is, I have something to share. B vitamins, like many vitamins, have effects against germs. So. . . . .keep in mind that die-off is always a possibility. When I suspect die-off, I use a small amount and then up slowly. I have learned many things about pathogens, like they thrive in certain conditions. For example, I have read that low copper leads to prion disease, low zinc leads to worms and parasites, low b vitamins are correlated to Strep and Bartonella. People often take B1 to keep mosquitos from biting. People give their pets Brewer's Yeast to keep mosquitos and fleas away. I can say for certain, that in my family, taking B1 keeps mosquitos from biting us. I found it very difficult to believe, but after trying it, being that we have lots of mosquitos, I was amazed to see it work. Just saying, but your report sounds good too. Love and prayers, Heidi N Some weeks back, I tried ramping up our mito support and I got to B1 (benfotiamine) and i started ramping that up. Things had been going well up until the point where I increased her b1 to 150 mg and i began to notice something strange. At 100 mg, her words seemed to diminish. WTH??? I searched around for toxicity issues with b1 and it's not known to do this. I then i stopped it and she was back to where she was. I played this cat and mouse game with benfotiamine a few time and once i brought her benfotiamine level to 175 mg. WHY was this happening??? I did a quick search on the functions of B1 and something stuck out at me. B1 is responsible for the production of two primary neurotransmitters: acetylcholine and GABA. Long story short, I found a few sources that said that GABA "toxicity" results in several other symptoms but the one that stuck out was...numbness of the mouth! So I dug around some more and learned more about acetylcholine production and a little about how it's used and I learned a few interesting things that were relevant to our OAT profile: 1. Acetylcholine requires acetyl-coA to be produced. Acetyl-CoA is a product of....yep, leucine metabolism ("the very next day, the cat came back, thought he was a goner but the cat came back cuz he couldn't stay away" started playing in my head when I read about it being a product of leucine). 2. In conditions of prolonged riboflavin deficiency, the mitochondrion will lose its ability to produce Acetyl CoA (this was a study done with lab rats) AND even if you start increasing riboflavin, you can't get it to start making Acetyl-CoA until you jumpstart the mitochondrion with ALCAR. Mistake #2 on my part, I didn't give enough ALCAR to jumpstart this (and it became obvious when I saw signs of too much GABA in her system when I gave higher doses of benfotiamine) .. Her system definitely needs B1 because her poops were just stellar, but it looked like her body wasn't metabolizing B1 to make acetylcholine and GABA in the right ratios. 3. Methlmercury interferes with the way acetylcholine is used because methylmercury binds to the choline acetyltransferase (the receptor for acetylcholine). I have 8 amalgam fillings and was quitting smoking at the time when i was pregnant with Maia and I chewed lots of Trident gum, never having an inkling at the time that i would release so much mercury in my body and why I felt nauseous and my mouth and gum tasted like metal. I also ate lots of cilantro while I was pregnant thinking it tasted so good and I was completely oblivious to the fact that it moves mercury. Just the metals in this equation alone is a quadruple-whammy! 4. The receptor for acetylcholine, choline acetyltransferase, also requires Acetyl-CoA to be made. 5. A riboflavin deficiency will stop the production of glutathione and this will result in a broken detox system that isn't able to move out the trace mercury and other toxins in everything we eat, drink and touch. This means that mercury accumulated in the system while we had low riboflavin and the low riboflavin was a double whammy because it also stopped the production of Acetyl-CoA. Then something funky started to happen at almost 200 mg of benfotiamine. She started drooling again!!! I hadn't seen this happen since we removed soy from her diet. And while we're on the subject of my archnemesis, soy...could this be the reason why she has trouble with soy??? The phosphotidylcholine??? I have to find out more about this. I've been wanting to post this to tell you guys about it because it just all made so much sense to me...all her symptoms are related to this. I also had something odd come back from a spot urine test she did with the creatine study we participated in with Sick Kids Hospital's autism research...her creatine came back "borderline elevated", possibly indicating a creatine transport problem, maybe? We're following up with a 24 hour urine sample and bloodwork, but something in my gut is telling me that this too is in some odd way related to this same problem, perhaps? Anyway, we've been seeing awesome gains in language. Receptive no longer needs to be worked on in therapy - our clinical therapist said that she is able to fully acquire receptive language in the natural environment now. With expressive language, there is still some verbal apraxia and some bits of the global apraxia left. I'm aggressively treating the mito problem caused by the riboflavin deficiency with 1200mg ALCAR, 500 mg l-carnitine, and 550 mg CoQ10, on top of the supps from before. I've also started chelating - This incident made me see that we will not fully restore the functioning of Acetylcholine until we take out the mercury. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Alberta, awesome awesome awesome post. Sounds like you're making good headway. Keep up the good work! Tammy Sent from my Kindle Fire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Thanks Cathy! Congrats on the progress and Yasko!! The B12 could very well be an issue for my son because our Yasko results showed several mutations that require several different forms of B12 (hydroxy, patch, etc -- cannot remember all of them). B12 was all over his recommendations. We increased my son's MB12 injections back in January to every other night and now I am wondering if this is the reason behind his improved memory and auditory processing/receptive language in the past month or two. We've made some other changes over the last couple of months too so cannot say for sure (the LDN had a noticeable improvement on social language/desire to interact with peers). Now i am wondering if we should start giving the MB12 shots every night. I need to do some more reading on the Yasko stuff as this is all still too new but hopefully our Dr. can help. Did anyone ever find out if you can get too much B12? I know my son's last nutreval in November showed him in the green and that was before we moved up the MB12 shots to every other night.Has anyone ever used the B12 nasal sprays with luck or not?cheers,megan To: mb12valtrex Sent: Tuesday, April 3, 2012 4:09 PM Subject: Re: Our curious incident with B1 and apraxia , I thought that might be you who just posted on the Yasko forum about B6! We just got the results for our ASD son on Saturday and the results for one of my NT daughters today. Just to let you know, my son started mouthing/chewing something fierce awhile back. I didn't think it was yeast as he didn't have other yeast flare symptoms. I tried higher zinc, lower zinc, and tested for metal excretion because all these things were suggested to me. It was none of those things. I had suspected it might be a lack of B12 because we had removed it a little while beforehand. The chewing stopped when we started the Yasko A1298C caps, but he was still mouthing. Then we started him back on B12 (hydroxy) and have worked up to two drops per day and the mouthing is now gone. So for him, it was a lack within the methylation cycle. Maybe that will trigger an idea for you. Cathy > > Thank you alberta!! My son and I both need more b2 as per our nutrevals so this is very interesting...i just started them on bcomplex transdermal bc they couldn't tolerate oral...also just got our yasko results and my son has a mutation that indicates he should avoid high b6...anyway, the transdermal seems to be tolerated ok at the moment but he does have his fingers in his mouth alot these days...i was thinking it was gut related bc we have been rotating the herbals (he is finally tolerating herbals somewhat)...but I am wondering if it could be what you describe below...unfortunately my son didn't seem to do well on alcar...thanks again for your post!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Hi and , I know that both of you have suggested the yasko testing and I still havn't done it as I am dealing with a possible PANS currently. But your posts made me evaluate my son's MB12 and stimming issues. I have been dealing with a lot of stimming issues for the last few months. In january we thought it was leucovorin so we stopped it. Then we treated yeast with diflucan which was based on symptoms. My son was on gcmaf and vancomycin and it made sense that the symptoms could be yeast. Then he had symptoms that seemed like pandas and we used zithromax. After zithro course, the symptoms that seemed like yeast got worse and his stimming has never been this bad. Now we are in the allergy season and that is not helping either. My son's runny nose and sneezing and itching are better with claritin but yeasty behavior is still there. He is still on diflucan. I realized that I have been missing a couple of B12 shots but then give it the following day which makes it every 4th day instead of every 3rd day. Is it possible that he also needs more frequent B12 supplementation? I have been maintaing a log but the response to b12 shots is inconsistent. Sometimes the day that he receives B12 shots, its like some channel suddenly opened in his brain and sometimes I just notice increased stimming. I am probably gonna get the yasko testing done soon but the results will take a long time. In the meantime, your advise will be really appreciated. Thanks is > > > > Thank you alberta!! My son and I both need more b2 as per our nutrevals so this is very interesting...i just started them on bcomplex transdermal bc they couldn't tolerate oral...also just got our yasko results and my son has a mutation that indicates he should avoid high b6...anyway, the transdermal seems to be tolerated ok at the moment but he does have his fingers in his mouth alot these days...i was thinking it was gut related bc we have been rotating the herbals (he is finally tolerating herbals somewhat)...but I am wondering if it could be what you describe below...unfortunately my son didn't seem to do well on alcar...thanks again for your post!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Hi is,I am definitely no expert on this but i am pretty sure we have noticed some yeast flares when we started and increased the MB12 shots so maybe the stimming you are seeing after the shots is from this (ie metals are moving with the Mb12 and flaring yeast)?...i know you mentioned that your son doesn't tolerate the herbals and my son and daughter dont do great on them either but i am pretty sure now after seeing the yasko results this is related to their blocked sulfation pathways (and phenols)....i think they are both tolerating herbals better now after introducing molybdenum and DMG (still need to add this for my daughter)....but i can tell when we go up too much on the herbals...anyway, we are now having some luck controlling my son's yeast by rotating evert 5 days herbals (GSE, Oregon grape, lomatium, OLE).....if you want, I can send you my son's yasko results so you can see what kind of info she can provide. Send me an email off list if you want me to send the results to you.hope this helps!megan To: mb12valtrex Sent: Tuesday, April 3, 2012 9:57 PM Subject: Re: Our curious incident with B1 and apraxia Hi and , I know that both of you have suggested the yasko testing and I still havn't done it as I am dealing with a possible PANS currently. But your posts made me evaluate my son's MB12 and stimming issues. I have been dealing with a lot of stimming issues for the last few months. In january we thought it was leucovorin so we stopped it. Then we treated yeast with diflucan which was based on symptoms. My son was on gcmaf and vancomycin and it made sense that the symptoms could be yeast. Then he had symptoms that seemed like pandas and we used zithromax. After zithro course, the symptoms that seemed like yeast got worse and his stimming has never been this bad. Now we are in the allergy season and that is not helping either. My son's runny nose and sneezing and itching are better with claritin but yeasty behavior is still there. He is still on diflucan. I realized that I have been missing a couple of B12 shots but then give it the following day which makes it every 4th day instead of every 3rd day. Is it possible that he also needs more frequent B12 supplementation? I have been maintaing a log but the response to b12 shots is inconsistent. Sometimes the day that he receives B12 shots, its like some channel suddenly opened in his brain and sometimes I just notice increased stimming. I am probably gonna get the yasko testing done soon but the results will take a long time. In the meantime, your advise will be really appreciated. Thanks is > > > > Thank you alberta!! My son and I both need more b2 as per our nutrevals so this is very interesting...i just started them on bcomplex transdermal bc they couldn't tolerate oral...also just got our yasko results and my son has a mutation that indicates he should avoid high b6...anyway, the transdermal seems to be tolerated ok at the moment but he does have his fingers in his mouth alot these days...i was thinking it was gut related bc we have been rotating the herbals (he is finally tolerating herbals somewhat)...but I am wondering if it could be what you describe below...unfortunately my son didn't seem to do well on alcar...thanks again for your post!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2012 Report Share Posted April 4, 2012 Hi ,We have used B12 shots and nasal spray. Shots haved worked best for our son but sometimes he is fairly opposed to receiving them. The spray works. Honestly, five minutes after the shot ( I give while he's asleep) I see the most restful, peaceful sleep in him. Tension just dissapates.Sent from my iPhone Thanks Cathy! Congrats on the progress and Yasko!! The B12 could very well be an issue for my son because our Yasko results showed several mutations that require several different forms of B12 (hydroxy, patch, etc -- cannot remember all of them). B12 was all over his recommendations. We increased my son's MB12 injections back in January to every other night and now I am wondering if this is the reason behind his improved memory and auditory processing/receptive language in the past month or two. We've made some other changes over the last couple of months too so cannot say for sure (the LDN had a noticeable improvement on social language/desire to interact with peers). Now i am wondering if we should start giving the MB12 shots every night. I need to do some more reading on the Yasko stuff as this is all still too new but hopefully our Dr. can help. Did anyone ever find out if you can get too much B12? I know my son's last nutreval in November showed him in the green and that was before we moved up the MB12 shots to every other night.Has anyone ever used the B12 nasal sprays with luck or not?cheers,megan To: mb12valtrex Sent: Tuesday, April 3, 2012 4:09 PM Subject: Re: Our curious incident with B1 and apraxia , I thought that might be you who just posted on the Yasko forum about B6! We just got the results for our ASD son on Saturday and the results for one of my NT daughters today. Just to let you know, my son started mouthing/chewing something fierce awhile back. I didn't think it was yeast as he didn't have other yeast flare symptoms. I tried higher zinc, lower zinc, and tested for metal excretion because all these things were suggested to me. It was none of those things. I had suspected it might be a lack of B12 because we had removed it a little while beforehand. The chewing stopped when we started the Yasko A1298C caps, but he was still mouthing. Then we started him back on B12 (hydroxy) and have worked up to two drops per day and the mouthing is now gone. So for him, it was a lack within the methylation cycle. Maybe that will trigger an idea for you. Cathy > > Thank you alberta!! My son and I both need more b2 as per our nutrevals so this is very interesting...i just started them on bcomplex transdermal bc they couldn't tolerate oral...also just got our yasko results and my son has a mutation that indicates he should avoid high b6...anyway, the transdermal seems to be tolerated ok at the moment but he does have his fingers in his mouth alot these days...i was thinking it was gut related bc we have been rotating the herbals (he is finally tolerating herbals somewhat)...but I am wondering if it could be what you describe below...unfortunately my son didn't seem to do well on alcar...thanks again for your post!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2012 Report Share Posted April 4, 2012 Hmmm...that's got me pretty intrigued now, Heidi. I'm going to try it again this long weekend since I have the extra two days and see if I can mop it up with some ac. I know she had a flu earlier around one of the " rounds " of benfotiamine and she's also had a history of alpha strep overgrowth in her gut. I'm on Day 5 of goldenseal right now and I've been pounding a lot of antifungals, antivirals and antimicrobials and I did see a tiny dribble of spit yesterday at the corner of her mouth, though it didn't exactly look like the benfotiamine drooling...this has got me wondering now, tho.... Ok, i'm going to give some ac tonight and start the b1 again tomorrow. I'd be so happy if that drooling is die-off! As beautiful as this is, I have something to share. B vitamins, like many vitamins, have effects against germs. So. . . . .keep in mind that die-off is always a possibility. When I suspect die-off, I use a small amount and then up slowly. I have learned many things about pathogens, like they thrive in certain conditions. For example, I have read that low copper leads to prion disease, low zinc leads to worms and parasites, low b vitamins are correlated to Strep and Bartonella. People often take B1 to keep mosquitos from biting. People give their pets Brewer's Yeast to keep mosquitos and fleas away. I can say for certain, that in my family, taking B1 keeps mosquitos from biting us. I found it very difficult to believe, but after trying it, being that we have lots of mosquitos, I was amazed to see it work. Just saying, but your report sounds good too. Love and prayers, Heidi N Some weeks back, I tried ramping up our mito support and I got to B1 (benfotiamine) and i started ramping that up. Things had been going well up until the point where I increased her b1 to 150 mg and i began to notice something strange. At 100 mg, her words seemed to diminish. WTH??? I searched around for toxicity issues with b1 and it's not known to do this. I then i stopped it and she was back to where she was. I played this cat and mouse game with benfotiamine a few time and once i brought her benfotiamine level to 175 mg. WHY was this happening??? I did a quick search on the functions of B1 and something stuck out at me. B1 is responsible for the production of two primary neurotransmitters: acetylcholine and GABA. Long story short, I found a few sources that said that GABA " toxicity " results in several other symptoms but the one that stuck out was...numbness of the mouth! So I dug around some more and learned more about acetylcholine production and a little about how it's used and I learned a few interesting things that were relevant to our OAT profile: 1. Acetylcholine requires acetyl-coA to be produced. Acetyl-CoA is a product of....yep, leucine metabolism ( " the very next day, the cat came back, thought he was a goner but the cat came back cuz he couldn't stay away " started playing in my head when I read about it being a product of leucine). 2. In conditions of prolonged riboflavin deficiency, the mitochondrion will lose its ability to produce Acetyl CoA (this was a study done with lab rats) AND even if you start increasing riboflavin, you can't get it to start making Acetyl-CoA until you jumpstart the mitochondrion with ALCAR. Mistake #2 on my part, I didn't give enough ALCAR to jumpstart this (and it became obvious when I saw signs of too much GABA in her system when I gave higher doses of benfotiamine) .. Her system definitely needs B1 because her poops were just stellar, but it looked like her body wasn't metabolizing B1 to make acetylcholine and GABA in the right ratios. 3. Methlmercury interferes with the way acetylcholine is used because methylmercury binds to the choline acetyltransferase (the receptor for acetylcholine). I have 8 amalgam fillings and was quitting smoking at the time when i was pregnant with Maia and I chewed lots of Trident gum, never having an inkling at the time that i would release so much mercury in my body and why I felt nauseous and my mouth and gum tasted like metal. I also ate lots of cilantro while I was pregnant thinking it tasted so good and I was completely oblivious to the fact that it moves mercury. Just the metals in this equation alone is a quadruple-whammy! 4. The receptor for acetylcholine, choline acetyltransferase, also requires Acetyl-CoA to be made. 5. A riboflavin deficiency will stop the production of glutathione and this will result in a broken detox system that isn't able to move out the trace mercury and other toxins in everything we eat, drink and touch. This means that mercury accumulated in the system while we had low riboflavin and the low riboflavin was a double whammy because it also stopped the production of Acetyl-CoA. Then something funky started to happen at almost 200 mg of benfotiamine. She started drooling again!!! I hadn't seen this happen since we removed soy from her diet. And while we're on the subject of my archnemesis, soy...could this be the reason why she has trouble with soy??? The phosphotidylcholine??? I have to find out more about this. I've been wanting to post this to tell you guys about it because it just all made so much sense to me...all her symptoms are related to this. I also had something odd come back from a spot urine test she did with the creatine study we participated in with Sick Kids Hospital's autism research...her creatine came back " borderline elevated " , possibly indicating a creatine transport problem, maybe? We're following up with a 24 hour urine sample and bloodwork, but something in my gut is telling me that this too is in some odd way related to this same problem, perhaps? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2012 Report Share Posted April 4, 2012 I wanted to add one more thing too that makes me think this is GABA overload. She craves coffee insanely. Everytime i put down a cup of joe, she's swiping it from under my nose and leaves me with an empty cup. And then her talking gets clearer as the day progresses. Last Sunday, i got tired of having my coffee swiped so I just gave her her own cup (1/3 cup of coffee with 1/2 cup milk). All day, she was very verbal and coming out with unprompted spontaneous comments. It was weird. Stuff that I've never ever prompted her to say, stuff that she's just heard me say...but using spontaneous comments appropriately. If it isn't die-off, I wonder if I could rig the pathway to take more b1 by just giving her a cup of coffee that she soooo wants anyway and if I could slow down GABA production just a tad so that it could keep pace with the rate of acetylcholine production and usage? I wish this were a 14-day weekend so I can try all of these things... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2012 Report Share Posted April 4, 2012 Here's what I stumbled upon when i was trying to find a way to cut down some gaba:Source: http://flatulencecures.com/coffee-digestion " ...Unfortunately, caffeine interferes with the way GABA binds to its receptors to provide that calming influence on both the brain and the GI tract (Ever tried slowing down and being very calm after a strong cup of coffee?). " There are several other sources including pubmed that outline how coffee interferes with how GABA binds to receptors.I've been wondering for abt a year and a bit why this girl loves caffeine so much and there's all this stuff going around abt how coffee is really bad. (i know im breaking the cardinal rule of biomed with this next bit)...but if this girl's given a choice of a caffeine soda or a soda like ginger ale or any other soda, she will ALWAYS choose the caffeine one. I've posted on another forum before wondering why she seeks caffeine (esp. coffee) so badly and will sometimes even cry when I take back the coffee before she can have some. I'd always assumed that it was because she was low glutathione, but with coffee's effects on neurotransmitters, i wonder if she's feeling something from coffee bc of a neurotransmitter dysbiosis? I hated the taste of coffee when I was a kid and most kids despise the taste of it. I often think that Maia is a lot smarter than me...if this works, she had the answer to this abt a year before I finally figured it out. And I wonder if the cause for this is genetic? Maia also has a cousin with some asperger-like characteristics who also started " needing " coffee around the same age (4 years old) and everyone thought that was odd. I wanted to add one more thing too that makes me think this is GABA overload. She craves coffee insanely. Everytime i put down a cup of joe, she's swiping it from under my nose and leaves me with an empty cup. And then her talking gets clearer as the day progresses. Last Sunday, i got tired of having my coffee swiped so I just gave her her own cup (1/3 cup of coffee with 1/2 cup milk). All day, she was very verbal and coming out with unprompted spontaneous comments. It was weird. Stuff that I've never ever prompted her to say, stuff that she's just heard me say...but using spontaneous comments appropriately. If it isn't die-off, I wonder if I could rig the pathway to take more b1 by just giving her a cup of coffee that she soooo wants anyway and if I could slow down GABA production just a tad so that it could keep pace with the rate of acetylcholine production and usage? I wish this were a 14-day weekend so I can try all of these things... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2012 Report Share Posted April 4, 2012 Wow! That's super interesting. I know coffee is great for some individuals with ADHD...Im not sure why, though. When Tom was Miai 's age, he craved coffee the same way. He was not not apraxic but his languauge was VERY limited... I never noticed if it increased his language use. But those were my "clueless" days and I wasnt looking for a connection. His desire for the coffee never really bothered me, it never made him hyper or crazy so I would let him sip. I think the sugar in it bothered me more than the coffee itself. Tammy Sent from my Kindle Fire Sent: Wed Apr 04 10:40:05 EDT 2012 To: " mb12valtrex " <mb12valtrex > Subject: Re: Our curious incident with B1 and apraxia I wanted to add one more thing too that makes me think this is GABA overload. Â She craves coffee insanely. Â Everytime i put down a cup of joe, she's swiping it from under my nose and leaves me with an empty cup. Â And then her talking gets clearer as the day progresses. Â Last Sunday, i got tired of having my coffee swiped so I just gave her her own cup (1/3 cup of coffee with 1/2 cup milk). All day, she was very verbal and coming out with unprompted spontaneous comments. Â It was weird. Â Stuff that I've never ever prompted her to say, stuff that she's just heard me say...but using spontaneous comments appropriately. Â If it isn't die-off, I wonder if I could rig the pathway to take more b1 by just giving her a cup of coffee that she soooo wants anyway and if I could slow down GABA production just a tad so that it could keep pace with the rate of acetylcholine production and usage? Â I wish this were a 14-day weekend so I can try all of these things... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 The sugar in the coffee isn't going to bother me at all if I can lift the apraxia. Holy moley, the apraxia's such a major b*tch and almost think that it's one of the most debilitating symptoms of ASD, for my kids at least. In fact, I'm going brew a fresh pot right now. I'm going to start coffee first and then re-start the B1, while keeping up the ALCAR. I'm going to try to increase the cofactors for Acetyl-CoA (eggs for breakfast this morning, because eggs are high in leucine; bring the CoQ10 up to 600 mg as outlined as the ceiling by our OAT; and keep up our 1200 mg of ALCAR), and give her a cup of coffee to inhibit the GABA. On Saturday, I'm going to give her some coffee and start the benfotiamine again. I was thinking when I woke up this morning: Ethan seemed to have a similar thing going on. When we noticed some hand flapping in him, we put him on GFCF and he got a lot worse on it. I think we may have triggered a borderline riboflavin deficiency. It's interesting that he was drooling excessively until we put him on L-Carnitine and then we finally stopped it totally after him being on ALCAR for several months after we did the LC. He didn't tolerate ALCAR at first. The model seems to hold true for him, as well, and he improved a lot when we put him back on gluten (a source of riboflavin). I just wish the R5P we used didn't have such a strong taste. He's doing well on a b-complex but he might actually do better if I do high dose R5P for him but he just won't drink his juice with too much R5P in it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 Alberta, Im fascinated with this thread. I wonder if there's another (or some other...however you choose to look at it) compound in caffeine in play, here. When Tom was little, he would walk straight past the juice, cookies and pastry to get to the caffeine. I remember reading a post at one time about a child who was so soothed by coffee that as a reward in school, they would allow him into the teacher 's room so he could smell the coffee brewing. Said it worked like a charm. I bet history of the coffee bean would reveal that it was once used for medicinal purposes. Maybe that will be Tom's assignment for the day today. Lol. Tammy Sent from my Kindle Fire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 I love this thread too...isnt there some autism issue that is helped by coffee enemas? Of course, I annot remember what it is or where I read it??!!-- Sent from my Palm Pre Alberta, Im fascinated with this thread. I wonder if there's another (or some other...however you choose to look at it) compound in caffeine in play, here. When Tom was little, he would walk straight past the juice, cookies and pastry to get to the caffeine. I remember reading a post at one time about a child who was so soothed by coffee that as a reward in school, they would allow him into the teacher 's room so he could smell the coffee brewing. Said it worked like a charm. I bet history of the coffee bean would reveal that it was once used for medicinal purposes. Maybe that will be Tom's assignment for the day today. Lol. Tammy Sent from my Kindle Fire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 I think caffeine improves methylation ( maybe a methyl donor)Sent from my iPhone Alberta, Im fascinated with this thread. I wonder if there's another (or some other...however you choose to look at it) compound in caffeine in play, here. When Tom was little, he would walk straight past the juice, cookies and pastry to get to the caffeine. I remember reading a post at one time about a child who was so soothed by coffee that as a reward in school, they would allow him into the teacher 's room so he could smell the coffee brewing. Said it worked like a charm. I bet history of the coffee bean would reveal that it was once used for medicinal purposes. Maybe that will be Tom's assignment for the day today. Lol. Tammy Sent from my Kindle Fire TODAY(Beta) • Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 This sparked my memory and made me start a preliminary search. I quickly found this which is not a scientific study, but the quotes are cool and could spark some interesting research: http://autoimmunethyroid.wordpress.com/2007/09/18/caffeine-and-coming-down-off-m\ ethyl-donors/ Cathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 Just a side note - you may not want to go reading too far on the blog I linked or it may make you very angry. That's what it did to me. However, the caffeine comments are worth exploring. Cathy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 Wow! Imagine?! Tammy Sent from my Kindle Fire Sent: Thu Apr 05 09:36:59 EDT 2012 To: mb12valtrex Subject: Re: Re: Our curious incident with B1 and apraxia I think caffeine improves methylation ( maybe a methyl donor)Sent from my iPhone Alberta, Im fascinated with this thread. I wonder if there's another (or some other...however you choose to look at it) compound in caffeine in play, here. When Tom was little, he would walk straight past the juice, cookies and pastry to get to the caffeine. I remember reading a post at one time about a child who was so soothed by coffee that as a reward in school, they would allow him into the teacher 's room so he could smell the coffee brewing. Said it worked like a charm. I bet history of the coffee bean would reveal that it was once used for medicinal purposes. Maybe that will be Tom's assignment for the day today. Lol. Tammy Sent from my Kindle Fire TODAY(Beta) • Quote Link to comment Share on other sites More sharing options...
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