Help understanding methylation

[greenshots]

Hi, I am new to this forum & trying to grasp this process slowly.
My practitioner has been great, she even translated the crazy chemistry diagrams but it's still a struggle coming into this with brain fog & fatigue. I look at her website diagrams & even though they're simpler by comparison, they aren't. At least for my brain. I understand this isn't new & that I'm not alone so hoping others have cracked the code, so to speak. I don't have the website address on me but know some of the new diagrams are at autismnti since she is also treating my child. I'll try to be more
prepared next time. Every time I see a Dr. Yasko diagram my brain shuts down so it's probably at least a better sign that I can look at hers without feeling terrified or overwhelmed.

I also had my genes done at 23&me but my doctor isn't able to translate most of these genes into Yasko genes so I only know I have the MTHFR A1298C & the CBS C699 defects. I saw the cheat sheet on another forum but can't seem to grasp how to change them as far as what's positive or negative. This whole experience gives me hope while making me feel Hopeless for not figuring it out. I can't spend much on myself since I have to focus on family first but realize if I continue to go down, the ship goes down. Any help is appreciated.
Angela

 

[Rosebud Dairy]

I never even did the methylation protocol for a while just for the same reason! Richvank's is simpler to understand when brain fogged. Some just start with methyl-B12, and methylfolate (metafolin). For me, metafolin is cheaper per milligram through prescription.

I only have a single C677T mutation, but have had five full term pregnancies plus all the nursing that went along with that, and with every pregnancy and nursling time, I just sank further and further. Sometimes antidepressants would work, sometimes they wouldn't........no rhyme or reason WHY until I saw my MTHFR deficiencies.

I suspect that synthetic female hormones, antibiotics, and mercury filling removals could exacerbate any MTHFR problems.

Living in, working in, or going to school in a water damaged building will also mess with you.

If you are taking care of children, finding the cheapest methyl cobalamin (Jarrow, of course) and cheapest source of methylfolate could be considered a good way to spend what little money you may have.

 

[Calathea]

Thank you - I was similarly lost! There is so much information on this website, and I have been looking through this forum for a while now and still haven't found the actual protocol, let alone an explanation that makes sense with brain fog.

What's up with the water damage? There's water damage to the stairwell outside my flat, we've been trying to get it fixed for years but the other owners keep passing the buck and the local council is not currently doing communal repairs.

Thankfully I haven't been near artificial sex hormones in years, they mess me up in various ways, but I did have a three-day course of antibiotics the other week for a suspected UTI and I have been faintly worried ever since then as people keep talking about the dangers of antibiotics here.

 

[richvank]

Hi, greenshots and all.

There are differing views on methylation-type treatments for ME/CFS. The most recent version of the protocol I have suggested can be found in the General Wiki section of these forums, which you can access at the bottom of the "Forum" page. The protocol is at the end of Part 7 of my documents there. Also in that part is information about the methylation pathways panel, which will determine whether a methylation treatment is likely to help a given person.

If you would like to find out about the rationale behind this protocol, you could view the video or slides here:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

The slides can be found below the video. The video is over 3 hours long, and scanning through the slides is another option.

I hope this is helpful.

Best regards,

Rich

 

[greenshots]

Thank you all for your comments. It's good to know there are others who feel the same way.
as for the diagrams I referred to, I finally found her website and hoped anyone interested could see whether this is on the same page as methylation treatment here.

www.autismnti.com

She has a page that refers to methylation and you can click on the diagrams.
They seem simpler but of course, this really isn't a simple chemistry pathway anyway, is it!
I've seen the benefits firsthand but it's another thing to do this whole treatment Protocol for myself.
I know her heart is in it since she charges less & she still took care of my daughter even when my husband was laid off but I also realize people can't work for free. Although it seems like she's not the only one when I see others here lending an ear & support.
I like the sound of a shorter treatment so will look at Rich's stuff as well!

I appreciate your time!
Angela

 

[Rosebud Dairy]

re: water damage

The THEORY is: a susceptible HLA DR/DBQ (genetic analysis from Ritchie Shoemaker) makes it so 25% of us have bodies that can't identify toxins to remove, much like with methylation, somewhere around 35-50% of us can't fully process B vitamins because of we lack an enzyme - from partially to fully. Treating according to the theory (as much of the medical community isn't even aware of HLA DR_DBQ implications) can help you know your own HLA, and then whether living in a water damaged building might be putting your health at risk.

 

[greenshots]

Forgive my ignorance but isn't HLA type what they test for organ transplants? So if I understand this correctly, there's a marker in each of us that rejects certain toxins or components in the environment just as we might reject another person's organ? If so, this seems pretty complex to track down & implies that you could never be re-exposed to mold, etc. again or you'd be back to square one. I ask because I was ill during a time that I lived in a damp, moldy building and during my daughter's treatment we had a water leak that my husband "took care of" which means it probably wasn't done right. Then my in-laws have had water/roof leaks. How on earth could you ever avoid every exposure?

 

[richvank]

Hi, greenshots.

You're right. If a person is within the 25% of the population that is vulnerable to developing biotoxin illness, it is very tough for them to avoid exposure to these toxins. There are people who live in RVs and tents and who travel around seeking a location in which they can feel relatively well. Check some of the posts by Lisa (Slayadragon).

And yes, it's the same HLA that is tested for in organ transplants. HLA stands for human leukocyte antigen. In mice, it's called the MHC (major histocompatibility complex).
The HLA comes in three classes. The important one for biotoxin illness is Class II. The role of the HLA complex is to display pieces of protein (sort of like flags) on the external surface of cells called antigen-presenting cells. The helper-T cells (CD4 lymphocytes) interrogate these "flags," and if they find the one they are programmed to protect against, they activate the immune system and knock it out. The problem in biotoxin illness is that some people have inherited genotypes of the HLA Class II complex that are not able to effectively display antigens from biotoxins, such as are produced by certain molds and bacteria found in water-damaged buildings. As a result, the immune system is not able to detect these toxins, and then they build up to a point where other parts of the immune system (the innate immune system) respond. Unfortunately, this leads to a sequence of events that produce biotoxin illness. Dr. Ritchie Shoemaker has studied this sequence for several years, and has developed treatments to correct it, but as you have suggested, it is still necessary for a person with this vulnerability to avoid exposure to these toxins.

Best regards,

Rich

 

[sianrecovery]

Hi greenshoots

I just wanted to say I have recently had the Yasko methylation panel done, and am also considering getting the HLA DR pcr done the next time I'm in the States. When I got back my Yasko results I felt very similar to you in terms of intrepreting them. I also knew I would struggle to afford the list of recommended supplements. In terms of my genetics, genetics is disposition, but not necessarily a destiny, and I feel much happier doing Rich's protocol which is clear and simple than fretting about the other supplements. I started it a few weeks ago, so time will tell. As for mold, as I have no objective correlate whatsoever at present for my intutive sense (or unsubstantiated fear?) that moldy water damaged environments make me worse, I am acting as if - within what is reasonable at present.I live in Northern England - rains all the damn time, high humidity, and I cant just wave a wand and change that overnight - but I have bought a couple of airfree models to take molds out of the air, and a dehumidifier, and am trying to find a balance between distrusting my environment and being able to relax in it. The longer MEers stay tense, the worse I think. Good luck - there will be a way forward xxxx

 

[greenshots]

Wow, that's extremely complicated too! Funny, I always did poorly in biochemistry & genetics (nutrition science degree) and here I am thrown right back into those horrible academic days! Only now, I have 1/4 the brain capacity that I had in my youth yet Yasko's crew seem to expect you to get your PhD in biochem and genetics to join their club. I'm just going to have to chalk it up to methylation dysfunction since that seems to make the most sense to me. With all of these people dropping in adulthood, this seems much more likely given the fact that such weaknesses with toxic threshold equals poor health. If mold were the whole story, I would think that it would make you ill much sooner in life, maybe during your childhood or teen years instead. Since I've come across many younger folks with a diagnosis of CFS/ME, maybe these poor creatures lived in or were heavily exposed to such moldy buildings and/or something equally as damaging. But I'll bet they still have severe methylation defects that helped get them there.

To be honest, I was initially confused by the underlying tension I sensed after signing up here & reading different responses. But then I thought about it & realized it was the same when I started treatment for my daughter in the autism world a couple years back. There always seems to be those more intent on the "us vs. them" camp when we should all be working together to figure this ridiculous puzzle out. For reasons I'll never understand, some are so intent on clinging to a theory, whether it helps them or not, that they miss the chance to actually heal! Since I know of no other theory that covers every single aspect of these disorders, I have to go with what's rational. Before my brain took a nosedive, I had a reasonable handle on all this stuff but now I get bits & pieces. However, if I come across another theory, I'll be sure to study it further rather than refute it in disbelief. In my mind, science means grabbing the chance to prove or disprove anything and everything while actually trying it out. But then, I always did like new ideas, though I realize that some hate change, even when its for the better.

Using Yasko's treatment, my daughter is now 98% recovered and I owe it all to my doctor. She's a nurse practitioner and is smarter and more caring than any doctor I've ever met plus she can do all the same things a doctor can do. She had just come from a MIND Institute talk with Dr. James and stayed late talking to a scientist she called "brilliant" and he told her all about Yasko. Where I come from, when someone whose absolutely brilliant feels that way about another practitioner and then dives in head first to figure it out, we listen. After researching it all year, she felt it was the answer to just about everything there was, so I signed on. Unfortunately, after I did the whole shebang with my daughter, it took quite a toll, so now here I am. I've heard this is super common and it makes sense when you think about where her genes come from. Anyway, if anyone can look at the diagrams she did and let me know if this is on par with what you are all doing here, I'd appreciate it. I get it somewhat, I'm just not putting all the pieces together whether its easier or not. I'm embarrassed to say that the cartoon characters make it less scary and my mind doesn't go blank so that's promising. They make sense and yet they don't so maybe its just autism related. I wish it was all done when my daughter was going through it so I'd have studied it before going brain dead! Also, if there's a new cheat sheet for 23&me I sure would love to see it. I can't figure out anything past the MTHFR & CBS.

Thanks again everyone, you're a great group!
Angela

 

[uni]

Angela,

What kind of treatment does this involve? Does this nurse practitioner give you specific forms of certain supplements? How did you daughter recover, and how much does this NP charge for her services?

Thanks

 

[greenshots]

You know, last I heard she had a long waiting list, probably because she doesn't charge that much. I think I paid $350 for my daughter's first visit (2 hrs on Skype) and that included her impression and recommendations for the treatment plan even though she wrote all that up afterward. She uses a combo of things but is heavy on the Yasko protocol and I liked that she made all the science easier & didn't expect me to give her every single herb on the list. She was always big about cost & saving resources. She prescribed a few medications when we needed them but mostly used supplements and ordered only major tests since we couldn't do it like Yasko wanted every week or month. The follow ups were around $175 to $200 every few months and there were no other fees that I remember, except for tests as needed. She's one of those that works from her heart but that doesn't always work so well in the real world so I have always worried she might not last. Last I heard, she got swamped when she opened her own solo practice and then one of her kids had some rare infection, but I think she treated him. I'll ask my neighbor since he actually recommend her to me. Even though he's a family doctor, she still treats his wife & son. That's what drew me to her initially, she has at least 20 different doctor's families for patients and that spoke volumes to me. I have her website on one of my earlier posts up above something like autismnti or nit.org/com.
Before I forget, she told me about this site about a year ago but I hadn't gotten around to it. There's a doctor on this site named Dr. Vank? Does anyone know who that is? She's spoken highly of him in the past & since she isn't one to do too often, I was curious.

Angela

 

[greenshots]

I feel like an idiot now since I looked through my other posts in this thread to be sure that I did put the website up there & I noticed that Rich replied and his full name included Vank! I had no idea at the time but its clear I'll need to review the sites he provided. If you see this Dr. Vank, thank you so much, I really appreciate your time! I've heard wonderful things about you and think its just awesome of you to volunteer your time like this to help others! I'll definitely read your other posts too!

Thanks once again!
Angela Dunlavey

 

[greenshots]

Angela,

What kind of treatment does this involve? Does this nurse practitioner give you specific forms of certain supplements? How did you daughter recover, and how much does this NP charge for her services?

Thanks

Ok, I asked my neighbor & he said she has a waiting list but its only 6 weeks or so. I guess her daughter was sick with something this time & she needed to fix that but she also got swamped with her practice. My neighbor used to be in a group practice with her before she left to focus on this medicine. I guess he's seen about 10 to 12 of her patients and was shocked to see that a patient they both shared for years was actually fully recovering from Parkinson's while another one had MS but was close to recovered. He said that after one with ALS showed signs of being well on their way, the group's neurologist had his wife see her too. Anyhow, he said her prices haven't changed so she's still surviving. Apparently she combines Nutrigenuomics as she learned it at UC Davis, & then Yasko, homeopathy and naturopathy, as well as mainstream medicine but that She still does telemedicine on Skype or will take telephone consults. Hope that helps Uni.
Angela