5 ms·

Every time I read a story about a kid with developmental disabilities and gut/gluten issues, I'm dying to know if they've ever tried MB12 and L5MTHF injections.

by newobj 14y ago

Every time I read a story about a kid with developmental disabilities and gut/gluten issues, I'm dying to know if they've ever tried MB12 and L5MTHF injections. God knows it changed my kid's (and my) life.

ghurlman 14y ago
Why? [citation needed]
- newobj 14y ago
  Son was diagnosed as autistic at age 2.5. Many developmental delays including speech, inconsolable screaming, waking up 8+ times a night, and on and on. Literally a day after receiving his first MB12/L5MTHF injection he started talking. In the year and a half since, along with other supplements (fish oils, B6, probiotics, TMG, Zinc, etc -- all over the counter), and cutting out soy/gluten/dairy/eggs etc he's basically a totally typical kid now - he has no therapies, goes to a normal school, is advanced in some areas. For myself, I lived a long time with low-grade but chronic anxiety and depression and after all this went down finally had some testing done on myself and found out I am homozygous for the C677T mutation, which means my body can't make methyl-B12 or methyl-folate. (Homozygous is 60-70% reduced efficiency in the reaction). I started supplementing with the same (though I get my MB12/L5MTHF orally, not injected), and for the first time feel like a cloud has been lifted. It's been amazing. Turns out my mom, her dad, and so on and so forth were all B-12 anemic. It took my son being severely impacted for ME to finally get tested to finally figure out for the whole family what the problem is. The interesting part is when the methylation process is disrupted by this mutation one of things whose production suffers is glutathione. It's a very important antioxidant (http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-...). Thinking about one of the major detoxifiers of the body being broken is interesting in light of the seemingly tenuous links between "autism" and vaccines etc. In short my armchair speculation is that there's likely a large overlap between undiagnosed 677T/1298C mutation sufferers and "autism" and when you think about injecting those kids with things that contain known irritants causing even more inflammation that the body can't clean out, it's not hard to imagine why it seems like they "cause" autism. To me it's simply more like pulling the trigger on a gun that's already been loaded and pointed to your head. Homozygous 677T mutation rate is somewhere between 1-15% in the US.
  - SoftwareMaven 14y ago
    This is...fascinating...and something I really need to study more. Given I have a family history of colon cancer, leukemia, and schizophrenia (all of which show up in the wikipedia article that is a top DDG result of "C677T mutation"[1]), there might be something more I have to care about here. Do you have other references I could follow up on? 1. https://en.wikipedia.org/wiki/MTHFR https://en.wikipedia.org/wiki/MTHFR
    - danielweber 14y ago
      Be very careful listening to anecdotes. Autism is a delay, so you could do something useless like crystal therapy and have the child get better afterwards, and -- based on standard human biases we all have -- think that the crystal therapy cured him. If you want to see what happens with an actual double-blind experiment, check out http://www.ncbi.nlm.nih.gov/pubmed/20804367 http://www.ncbi.nlm.nih.gov/pubmed/20804367
Roboprog 14y ago
OK, I caught methylated-B12, but what's L5MTHF?
- Roboprog 14y ago
  and for our newbies to autism spectrum jargon out there: GFCF = gluten free, casein free (no wheat, no dairy, nor things derived from those proteins)
  - jseliger 14y ago
    Interesting. Have people started offering cookbooks, recipe guides, and so forth, predicated on these principles? No gluten, wheat, and dairy would knock out quite a bit of my diet.
    - newobj 14y ago
      The diet ends up being pretty close to paleo. Other things that are commonly cut are soy and eggs. And no meat that is grain fed, so that mainly leaves grass fed beef, game, lamb, etc. It can be a real pain in the f'in ass but once on the diet I've felt and looked the best I have in years. (I forgot to mention, in addition to being diagnosed with the 677T mutation I also found out that I had severe IgG food sensitivities to gluten, oats, dairy, soy, all eggs, all fowl meat, almonds, peanuts, cranberries... shudder to think the 10 years I spent being vegan eating tofu and seitan full-time...)
      - Roboprog 14y ago
        yeah, I used to jokingly call this the "pseudo-Atkins" diet, but of course, you can have a potato, or some brown rice once in a while. Glad the diet and vitamins are working well for your family. We need to get our daughter back on a more restrictive diet, I think.
    - amalcon 14y ago
      I know someone with food allergies who swears by this one: http://www.amazon.com/The-Egg-Free-Milk-Free-Wheat-Free-Cookbook/dp/0060149787 http://www.amazon.com/The-Egg-Free-Milk-Free-Wheat-Free-Cook...
aantix 14y ago
Care to further explain the purpose of these injections and how they personally affected you?
- Roboprog 14y ago
  They are to deal with a metabolic deficiency processing and/or digesting B vitamins. (my daughter has taken the methylated B12 shots before)
- newobj 14y ago
  See my response below but I'll also throw out this link here that I found recently: http://drneubrander.com/blog/2011/08/why-is-methyl-b12-stressed-at-our-clinic-and-how-does-it-help-kids-with-asd/ http://drneubrander.com/blog/2011/08/why-is-methyl-b12-stres...
richardjordan 14y ago
Not questioning your personal experience but do you have any scientific studies not authored by vendors of the supplements that support this. I have an autistic son, and like most parents in this situation, helping him is my number one priority. However my understanding jibes more with this NIH study which shows no statistically significant benefits. http://www.ncbi.nlm.nih.gov/pubmed/20804367 http://www.ncbi.nlm.nih.gov/pubmed/20804367 I'd love pointers to peer-reviewed studies in favour of this stuff, as I'd love to believe there's a simple solution like this... I just fear there isn't. Again, not questioning that you feel your child has benefited - just asking what tipped the balance for you in trying this out and do you have any scientific studies you can point one to in order to research this more?
- newobj 14y ago
  We were lucky enough that one of the first interventions we ever tried for him besides OT basically cured him. I can tell you that many, many parent in the online communities we're members of will tell you the "talked after MB12 shot" story. So, no action we took was on the basis of a comprehensive and wide-ranging scientific study of studies... rather finding a D.A.N. doctor who knew just what to do. What tipped the balance was that this is one of the least interventive things possible. Really THE least. Everything he takes can be had over the counter. We did it blind at the time because I had no clue about 677T and only found about it later. To honestly answer your question, as I mentioned below, I'm getting the feeling (again, armchair, lay person only, but been living in communities real and online for a few years now) that autism is an overly or perhaps entirely umbrella term that's really capturing a number of diseases with similar pathologies. One of which would be 677T/1298C mutation, specifically homozygous or compound hetero. The good news is that it seems easy to treat. I know not every autistic kid out there has the same root cause, but being the parent of one, and going to his (old) school, and seeing so many poor beautiful kids impacted that it just crushes my heart to pieces, and their poor parents trying so hard to fight through it all and get them help... I really have no choice but to be an advocate for getting your kid screened. It's a simple blood draw, find out their 677 and 1298 status. And if they're anything, even heterozygous, immediately get them on MB12/L5MTHF. I fear for other parents, esp. those of vax injured kids, the road could be much harder, with chelation possibly being necessary etc (which is obiously fairly interventive and HIGHLY controversial). But if there's any chance that part of the solution could be such a low hanging fruit, I have to get the word out as much as I can.

by newobj 14y ago

ghurlman 14y ago

Why? [citation needed]

newobj 14y ago
Son was diagnosed as autistic at age 2.5. Many developmental delays including speech, inconsolable screaming, waking up 8+ times a night, and on and on. Literally a day after receiving his first MB12/L5MTHF injection he started talking. In the year and a half since, along with other supplements (fish oils, B6, probiotics, TMG, Zinc, etc -- all over the counter), and cutting out soy/gluten/dairy/eggs etc he's basically a totally typical kid now - he has no therapies, goes to a normal school, is advanced in some areas. For myself, I lived a long time with low-grade but chronic anxiety and depression and after all this went down finally had some testing done on myself and found out I am homozygous for the C677T mutation, which means my body can't make methyl-B12 or methyl-folate. (Homozygous is 60-70% reduced efficiency in the reaction). I started supplementing with the same (though I get my MB12/L5MTHF orally, not injected), and for the first time feel like a cloud has been lifted. It's been amazing. Turns out my mom, her dad, and so on and so forth were all B-12 anemic. It took my son being severely impacted for ME to finally get tested to finally figure out for the whole family what the problem is. The interesting part is when the methylation process is disrupted by this mutation one of things whose production suffers is glutathione. It's a very important antioxidant (http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-...). Thinking about one of the major detoxifiers of the body being broken is interesting in light of the seemingly tenuous links between "autism" and vaccines etc. In short my armchair speculation is that there's likely a large overlap between undiagnosed 677T/1298C mutation sufferers and "autism" and when you think about injecting those kids with things that contain known irritants causing even more inflammation that the body can't clean out, it's not hard to imagine why it seems like they "cause" autism. To me it's simply more like pulling the trigger on a gun that's already been loaded and pointed to your head. Homozygous 677T mutation rate is somewhere between 1-15% in the US.
- SoftwareMaven 14y ago
  This is...fascinating...and something I really need to study more. Given I have a family history of colon cancer, leukemia, and schizophrenia (all of which show up in the wikipedia article that is a top DDG result of "C677T mutation"[1]), there might be something more I have to care about here. Do you have other references I could follow up on? 1. https://en.wikipedia.org/wiki/MTHFR https://en.wikipedia.org/wiki/MTHFR
  - danielweber 14y ago
    Be very careful listening to anecdotes. Autism is a delay, so you could do something useless like crystal therapy and have the child get better afterwards, and -- based on standard human biases we all have -- think that the crystal therapy cured him. If you want to see what happens with an actual double-blind experiment, check out http://www.ncbi.nlm.nih.gov/pubmed/20804367 http://www.ncbi.nlm.nih.gov/pubmed/20804367

Roboprog 14y ago

OK, I caught methylated-B12, but what's L5MTHF?

Roboprog 14y ago
and for our newbies to autism spectrum jargon out there: GFCF = gluten free, casein free (no wheat, no dairy, nor things derived from those proteins)
- jseliger 14y ago
  Interesting. Have people started offering cookbooks, recipe guides, and so forth, predicated on these principles? No gluten, wheat, and dairy would knock out quite a bit of my diet.
  - newobj 14y ago
    The diet ends up being pretty close to paleo. Other things that are commonly cut are soy and eggs. And no meat that is grain fed, so that mainly leaves grass fed beef, game, lamb, etc. It can be a real pain in the f'in ass but once on the diet I've felt and looked the best I have in years. (I forgot to mention, in addition to being diagnosed with the 677T mutation I also found out that I had severe IgG food sensitivities to gluten, oats, dairy, soy, all eggs, all fowl meat, almonds, peanuts, cranberries... shudder to think the 10 years I spent being vegan eating tofu and seitan full-time...)
    - Roboprog 14y ago
      yeah, I used to jokingly call this the "pseudo-Atkins" diet, but of course, you can have a potato, or some brown rice once in a while. Glad the diet and vitamins are working well for your family. We need to get our daughter back on a more restrictive diet, I think.
  - amalcon 14y ago
    I know someone with food allergies who swears by this one: http://www.amazon.com/The-Egg-Free-Milk-Free-Wheat-Free-Cookbook/dp/0060149787 http://www.amazon.com/The-Egg-Free-Milk-Free-Wheat-Free-Cook...

aantix 14y ago

Care to further explain the purpose of these injections and how they personally affected you?

Roboprog 14y ago
They are to deal with a metabolic deficiency processing and/or digesting B vitamins. (my daughter has taken the methylated B12 shots before)
newobj 14y ago
See my response below but I'll also throw out this link here that I found recently: http://drneubrander.com/blog/2011/08/why-is-methyl-b12-stressed-at-our-clinic-and-how-does-it-help-kids-with-asd/ http://drneubrander.com/blog/2011/08/why-is-methyl-b12-stres...

richardjordan 14y ago

Not questioning your personal experience but do you have any scientific studies not authored by vendors of the supplements that support this. I have an autistic son, and like most parents in this situation, helping him is my number one priority. However my understanding jibes more with this NIH study which shows no statistically significant benefits. http://www.ncbi.nlm.nih.gov/pubmed/20804367 http://www.ncbi.nlm.nih.gov/pubmed/20804367 I'd love pointers to peer-reviewed studies in favour of this stuff, as I'd love to believe there's a simple solution like this... I just fear there isn't. Again, not questioning that you feel your child has benefited - just asking what tipped the balance for you in trying this out and do you have any scientific studies you can point one to in order to research this more?

newobj 14y ago
We were lucky enough that one of the first interventions we ever tried for him besides OT basically cured him. I can tell you that many, many parent in the online communities we're members of will tell you the "talked after MB12 shot" story. So, no action we took was on the basis of a comprehensive and wide-ranging scientific study of studies... rather finding a D.A.N. doctor who knew just what to do. What tipped the balance was that this is one of the least interventive things possible. Really THE least. Everything he takes can be had over the counter. We did it blind at the time because I had no clue about 677T and only found about it later. To honestly answer your question, as I mentioned below, I'm getting the feeling (again, armchair, lay person only, but been living in communities real and online for a few years now) that autism is an overly or perhaps entirely umbrella term that's really capturing a number of diseases with similar pathologies. One of which would be 677T/1298C mutation, specifically homozygous or compound hetero. The good news is that it seems easy to treat. I know not every autistic kid out there has the same root cause, but being the parent of one, and going to his (old) school, and seeing so many poor beautiful kids impacted that it just crushes my heart to pieces, and their poor parents trying so hard to fight through it all and get them help... I really have no choice but to be an advocate for getting your kid screened. It's a simple blood draw, find out their 677 and 1298 status. And if they're anything, even heterozygous, immediately get them on MB12/L5MTHF. I fear for other parents, esp. those of vax injured kids, the road could be much harder, with chelation possibly being necessary etc (which is obiously fairly interventive and HIGHLY controversial). But if there's any chance that part of the solution could be such a low hanging fruit, I have to get the word out as much as I can.