LNN Posted November 14, 2011 Report Posted November 14, 2011 After trying to understand methylation on both the lyme and Pandas forums, I broke down and bought Amy Yasko's Autism: Pathways to Recovery ($54 for book and 2 DVDs). The book was somewhat informative but is really meant for families that have done all of her recommended genetic testing and are using her supplements protocol. It makes the book read a bit like an infomercial and I was a little disappointed. But then I watched one of the DVDs of her giving an all day presentation on her views (it's pared down to 2 hrs). I was totally blown away. She spends the first hour going over methylation, its effects on seratonin and dopamine and spends a lot of time discussing glutamate and gaba. So may of the things she touches on for her autism audience rings so true for all of us. Then about an hour into the DVD, she goes into a 20 min. discussion of Pandas and what she believes is happening at a chemical level. Then she talks about metals, toxins and viruses and how they screw up methylation as well. It all made so much sense. So I was left both excited and confused. Everything she discussed seemed to be backed by very sound reasoning (though I'm certain at least some of it is her theory and not yet validated by research). So why haven't more doctors jumped on the band wagon? I feel pretty confident that Swedo, Hornig, Newell and others understand methylation and its implications. Its effects on T cells and inflammation and neurotransmitters. It seems right up Klinghardt's alley. What am I missing? Does anyone know the downside or why Yasko's approach hasn't been embraced? (For anyone wanting to feed their geeky side - I highly recommend the DVDs that come with the set (DVD + book set must be ordered from Yasko's site - Amazon only sells the book).
Suzan Posted November 14, 2011 Report Posted November 14, 2011 Wow, Sounds great! I'm a geek (hand raised, see?!) I want to read it! Thanks for the recommendation. I will try to remember to ask the doc today if he knows why it's not a bigger deal yet in the medical community. I know we are on the cutting edge here with lyme and pandas and the methylation stuff throws us to the top of the pile, LOL. But still, I agree, I wonder what the reasoning is to not put it in the mix for those big name docs who are right in the thick of it. Susan
SSS Posted November 14, 2011 Report Posted November 14, 2011 Hi- Typically in the biomedical/DAN! Dr. world, the methyl. pathway is on of the first things looked at- and is often comprimised, hence the big run on MB12 shots. We have 2 double whammies when it comes to detoxification issues with my dd- one of her genes is comprimised in the methyl. pathway, and also one is comprimised HLA multisusptible for mold and Lyme toxins. Yasko was big as far as a treating Dr., but it was very, very expensive- many tests and many supplements sold only through her- more follow up tests. We have had a devil of a time with the B12 for dd- I have tried and tried to supp this, many forms and many methods, sticking it out in case it was just detox, such a negative impact, it is on hold. I don't think we'd be in this hot mess if detox wasn't an issue.
SSS Posted November 14, 2011 Report Posted November 14, 2011 And then I've heard the question asked: Which came first? Born with these genes set up for detox failure, or such a young body overloaded with mercury and other toxic metals, an assault of Lyme, mold other deep bacterial infections causing the genes to turn themselves? Makes one wonder... and sad. (me, for my daughter.) But knowing these genes are comprimised is the very reason I refuse to allow my other children to be vaccinated ever again- just in case they also carry these, and one more toxic assault could tip it over.
LNN Posted November 14, 2011 Author Report Posted November 14, 2011 You know, Yasko says in her video that her experience and that of other Drs is that B12 is indicated for everyone, that it would be hard to get too much. Yet, Pfeifer and other meth cycle articles seem to suggest that an under-methylator would have a hard time with B12, even in its various forms. DH was prescribed sublingual B12 by his integrative and he could only take it for a few days before stopping. It gave him a jittery, tingly sensation in his limbs and he didn't like it one bit. From piecing together the cycle and my kids, I walk away with the feeling that it wold be bad for my kids as well, and that they wouldn't be able to describe the sensation. So I'm not going there. We go for our MTHFR blood draw this afternoon. DS has the HLA DR gene that makes him somewhat susceptible to mold but I don't think that's our major hurdle (I feel sooo much better now that the washing machine is clean - hives are gone and my cough is clearing - who knew?). What was really interesting in her video is that she spends a lot of time discussing the damage caused by glutamate but then says it's glutamate's effect on calcium that really does the damage. That glutamate is the gun, calcium is the bullet. But you can block the damage from excess calcium by supplementing with (drum roll....) B6 and zinc. Which is what you supplement for KPU - and the very thing that's given us significant and sustainable improvement for DS since August. And there's no doubt glutamate has been a huge issue for him. So it ties together pretty neatly. I understand Yasko is no longer treating patients - not that we would afford her or the tests anyway. But I'm sure I can get our LLMD to test a few additional genes if it looks affordable and then do some trials of a few supplements gradually over time - betaine, methylfolate, niacinamide are on the top of my list. May also look for something to improve lipids, yet am leary of Omega 3s due to previous bad response. I just read on our Inositol bottle that it may improve cell health and phospholipids - anyone know if what else does this, or if inositol is a good one? I assume since ASD is not yet "cured" that Yasko's ideas are part of the puzzle but not the whole enchalada. Is it just the cost? The length of time needed to see results? The number of pills you end up taking? Or is it just that the ball of string gets so tangled that one "protocol" alone doesn't get the job done? I know for us, we'll still have lyme and cysts and films and probably mercury to deal with. But it feels like methylation supplements can help us strengthen the foundation and give us stronger armies, that this may just help us win the war. Am I being too optimistic or naive?
SSS Posted November 14, 2011 Report Posted November 14, 2011 (edited) No, I don't think you are at all, I think you are onto something! I started taking our presription HB12 nasal spray, since dd couldn't tolerate it, and I like it, go figure. Dr. Bradstreet is onto nagalase regulation with the GcMAF shots - I get his blog updates- and this somehow regulates the calcium and vit. D, T-1/T-2 receptors (I am butchering this explanation and spelling, most likely) but it is fascinating how this is improving the immune system-seeing direct results. He is saying in his 15 years as a biomed Dr., this is the biggest breakthrough he has seen- the better health guy is talking about these shots, too- It's all over my head, but links to exactly what you are saying about the calcium... Edited November 14, 2011 by S & S
butterflymom Posted November 14, 2011 Report Posted November 14, 2011 (edited) = Edited October 5, 2015 by tampicc
MichaelTampa Posted November 14, 2011 Report Posted November 14, 2011 Another geeky book that talks some about methylation is "Explaining Unexplained Illness" by Martin Pall, where he proposes the nitric oxide cycle is a cause of disease (not that I necessarily agree with that). But he proposes a lot of supplements to help with that, and I think there is a little mention of using oxygen concentrator, although that helped me a lot too.
LNN Posted November 14, 2011 Author Report Posted November 14, 2011 I wish I was smarter, just a silly musician here, haven't had math since high school. I click on the pathway maps and it looks so fascinating, but I just don't know what to do with it. Art/Communications/Business major here. Spent HS chemistry class flirting with the center of the basketball team (and I'm 5'2" - so you can see how I regret that decision on many fronts now). I too look at the pathways map and the eyes glaze over like a deer in the headlights. But I highly recommend the DVDs. Yasko will ofetn use her pointer to highlight something on a powerpoint illustration and say "so you can see how ABC leads to XYZ" and I'm like "um, yeah....I see a picture of a bunny in a hot air balloon". But her general discussion is pretty clear and at a high enough level that you can follow it. I'll end up watching it several times - way TMI to absorb in one sitting. But it is giving me some exciting ideas. If you can follow music, I'm sure you have the intelligence to piece it together as well as any of the rest of us. I too started supplementing with Core and have started recalling my dreams for the first time in a long time. Very weird. The one thing you may want to consider is the B complex. I've read in more than one place that B12 is great for everyone. But in my post above, I'm not sure that's something I'm comfortable with. I think it may be a matter of balance. If you're low in other Bs, not sure adding tons of B12 makes anything better. I'm not sure if I'm right, but I'm instead going to try supplementing individual Bs - B3, B6 specifically and possibly a return to B8 (inositol) for lipids. Somewhere in my gut, with no scientific justification, I feel uncomfortable with a B complex. It just feels like too much of a blanket approach. Maybe I'm just being weird. I know my LLMD recommends a B complex. But I'm still leary. BTW - the DVD and other Yasko writings discuss ADHD. It's an area I need to go back to - I'm still in gloss-over, read it all for overview mode. My DS also struggles with attention. But I'm guessing you may find some AHA things. You can go to her site and view PDFs of some of her presentations - just not sure how comprehensive it is.
lss Posted November 15, 2011 Report Posted November 15, 2011 Has anyone tried Methyl-guard by Thorne? The ingredients listed are Vit B6, B12 and folate. If anyone tried, can you please tell me what results you may have seen? Linda
sptcmom Posted November 16, 2011 Report Posted November 16, 2011 I've read Yasko in depth and she is brilliant and explains methylation in depth. It is seriously cost prohibitive, very narrow focused rather than casting the net wide but its also been very successful for one family in my practice where mom has diligently followed Amy's protocol. So the methylation issue is remedied, now I have to handle the PANDAS, the Lyme, the Co infections, The autoimmune etc. The autism in this child is still there but she seems better oriented, is speaking better, has more organized thought, multisensory processing is better after Yasko's protocol. She is also on my protocols for PANDAS and lyme & Co and on Dr Jones's abx. So all in all Yasko's stuff blended in well.This is two years on Yasko stuff and 6 months on Dr J and my protocols. Fixing one piece of the puzzle like methylation is not a cure but a big step ahead. Im seeing Dr Bradstreet in December and hope to get some mentorship. At my last meeting with Dr Klinghardt, he's the one who suggested I meet with Jeff Bradstreet about his theory of Vit D3, nagalase and GC mAF. I have a good supply of GcMAF sitting in my freezer waiting for pediatric protocols I hope to get from Dr Bradstreet. I am also in touch with Scott Forsgren (betterhealthguy) and as he posts in his blogs too, is having a hard time with the GcMAF shots. Its all so new.Im in touch with a Canadian patient of Dr Bradstreet and Dr Klinghardt and he too says to be very cautious with GcMAF - serious return of inflammation. About Nagalase Nagalase is an enzyme that has been found to be produced by some viruses (such as influenza) and retroviruses (such as HIV, and apparently XMRV as well) and by some types of cancer cells. They use this to inactivate the GC protein (also known as the vitamin D binding protein) so that it cannot be converted to MAF (the main macrophage activating factor). If the macrophages do not become activated, the immune system will not go after the pathogen or tumor. So a high nagalase level means that there is a virus or tumor present that it using it to foil the immune system. As it is lowered, it suggests that the virus-infected cells or tumor cells are being lowered in numbers. Dr Yamamoto originally studied GcMAF in Philadelphia and his studies are mostly cancer related. There is a controversy about the best product. If you read on lymenet you will see people discussing Yamamoto's formula being available in Israel etc. What I find is ultimately the therapies that work are the ones that help regulate one's own immune system. Other than that we have keep supporting ourselves and our children symptomatically to stay functional, go to school/work etc and keep trying to piece things together slowly. I've come to realize that no one therapy, protocol, doctor, guru, medical approach is going to have answers to all of the problems afflicting our families. We have to guide the process ourselves.
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