Response to Everybody re: Methylation

[Guest guest]

Wow. I ignored my e-mail over the weekend -- and came in tonight to

see all these messages!

I'll answer what I can in one generic message, if you don't mind.

Thanks.

Here are four sites that contain the outlines of the theory, and what

we did, and some remarks from Rich von Konyenenburg, who did the

study. All of this information pertains to the work Rich did with his

CFS patients. Whether or not any of this pertains to Lyme is, at this

point, strictly an untested hypothesis. But Rich has a pretty

persuasive argument for how Lyme could create the methylation cascade

problem, and has begun pursuing the question.

About.com has a brief page that's a good basic intro:

<http://chronicfatigue.about.com/od/treatmentprotocols/a/glutathioneCFS.htm

>

Rich's work was grounded in studies done by several doctors including

S. Jill and Myhill. Dr. Myhill's critique and summary of

the protocol is the best one I've found:

<http://www.drmyhill.co.uk/article.cfm?id=401>

Rich's own explanations for how the methylation cycle goes wonky are

here:

<http://www.meactionuk.org.uk/hypothesis.html>

<http://www.chronicfatiguetreatments.com/wordpress/treatments/a-great-forum-post\

-by-dr-rich-van-kronynenberg-about-the-recent-cdc-genetic-study-on-chronic-fatig\

ue/

>

You'll notice that several of these links offer a short list of

supplements that are sort of basic to the protocol. This " simplified

protocol " (as we came to know it) was worked up as a sort of shortcut

for people who didn't have the $1200 for the full genetic test needed

to design a fully personalized protocol. It's also a try-before-you-

buy thing. Some of us did very, very well on some variant of this

short list (I can't take SAMe, because of where my own system failures

lie in the cycle; but the rest of these items were central to my

recovery, and a couple are still part of my daily regime). Others of

us found that this shortcut just didn't get them there; but did quite

well once they got on the full test-supported protocol.

The full Yasko genetic test is available at <www.holisticheal.com>, as

are some of the essential supplements. The test alone costs $400; but

you won't be able to make head or tail of the results. The $1200

version includes a personalized interpretation, a book explaining the

theory, and a list of specific supplements you should be taking.

The tests include a whole mess of stuff -- about 40 in all. It tests

two to four SNPS each on the CBS, MTHFR (which we came to call

" motherf----er " ), MTRR, NOS, VDR, MAO, SUOX, and other channels. (The

people with the CBS up-regulations had the hardest time recovering --

and the simplified protocol was least likely to work on them. That

one, fortunately, passed me by.) This collection of genes controls a

lot of our stress management chemicals in the adrenal pathways;

process Bs; handle dopamine production; and cover insulin, ammonia,

and other chemical processing. Interestingly, of the several hundred

CFS patients who've been tested now, there are a handful of these gene

mutations that were found in over 90% of participants. That suggests

there's a genetic predisposition to respond to some immune assaults

this way.

Taking these supplements begins to restore the cycle -- and as the

system comes back online, glutathione production rises, and the body

begins to clear its toxic burden. Yasko likes her patients to do

constant urine testing to see what's being thrown off. I only did this

a few times, to confirm that the process was happening. (It was, big

time.) But mostly, the level of herx told me what I needed to know. I

was on this protocol for a year and a half. I stopped most of them

last spring because my system was doing so well that adding extra

detox support didn't really help any more. (The p5p/B6, Neuro PS, and

niacinamide are still part of the routine.)

A warning: Yasko has also prescribed a rather shady and wildly

expensive set of " RNA drops " to her autistic patients. Few of us

bothered to invest in them -- they're not necessary to the process,

and I found the science questionable. On the other hand, her Intrinsic

B12 and FolaPro folinic acid are worth the investment, since they're

so central to the protocol -- as is her HH General Vitamin, which is

not on the above-linked lists but should be.

Kenda, you found yourself a real jewel of a doc. I'm assuming you had

the Genova Detox panel, which does cover many of the SNPs (mutations)

that are also covered in the Yasko testing. It's a very useful test,

and the second-most-common one taken by the group. The fact that you

don't metabolize B vitamins is a pretty strong sign that your

methylation is messed up, because the whole system is designed around

metabolizing Bs. Oral B12 doesn't work well, as you note. Sublingual

is considerably better; injected is the best of all. And it sounds

like you've found some real relief from pursuing this course.

Maureen, IM B12 on its own didn't do it for me, either. The shot my

doc in LA gave me was a 5 ml IM syringe that had 2800 mg 10% reduced

glutathione; 2000 mg methyl B12; and 200 mg AMP. AMP is a precursor to

ATP, which is responsible for cellular energy transfer. (I once asked

my compunder to make me a set with ATP instead, but they didn't nearly

work as well as the AMP version did.) This cocktail was, as we used to

say in Silicon Valley, PFM (pure freaking magic) for me. Adding the

Yasko supplements a few months later allowed me to solidify the gains

and accelerate the detox.

Also, Maureen, your description of your muscle problems and post-

exertional pain is very familiar to me. It took about a year of

detoxing with the Yasko supplements to bring that pain down. I still

get it, but it's a quarter of what it used to be. And that last bit is

attributable to the Lyme.

I know there will be a million more questions. I hope I didn't open a

can of worms. But I've done a lot of things over the past 10 years to

address my fatigue, and this was easily the biggest and best one of all.

Sara