Increasingly, the function of the methylation cycle is being considered as one of the candidates for the biomarker of ME/CFS. So far, nearly every PWME who has reported their results on Phoenix Rising has apparently shown a defective methylation cycle, whereas a control group will not show any abnormalities.
The only lab in the United States (at least that I am aware of) that performs this blood test is Vitamin Diagnostics in New Jersey. I obtained a doctor's order back in March, then ordered the test tube kit to be shipped to me by Vitamin Diagnostics. From there, I had to find a lab that would draw the blood and ship it to New Jersey, which I finally did in July, 2012. Now, I've finally received the results almost a year after the process began!
The results are very consistent with other PWME's on PR who have taken the same test. There is no doubt about it, my methylation cycle is broken.
The next step is to get back on a methylation protocol. I was on Fredd's Active B12 protocol for most of 2012, but I didn't notice much of a difference while I was on it. So I think I'm going to switch to the late Rich Van Konyenberg's Simplified Methylation Protocol. Maybe I will run this test again in another year and see if my numbers improve.
[3/5/13 edit: Before I had a chance to start the Simplified Methylation Protocol I read Dr. Amy Yasko's book so now I'm going to do the full, un-simplified protocol. I'm convinced this might be necessary for me.]
My results are posted below. All numbers in a box are outside of the reference range--i.e. abnormal. My main conclusion comes from the first two numbers. The too-high Glutathione (oxidized) means that my body is suffering from oxidative stress -- it simply cannot eliminate oxidized glutathione efficiently. This is why, I believe, even small amounts of exercise exacerbate my symptoms.
The second number (Glutathione - reduced) means that I am not producing enough glutathione, which simply indicates that the methylation cycle is broken.
For a full article on how to interpret these results, see Rich VanK's article on Phoenix Rising.
Good luck with this. Keep us posted. Do you track your energy or anything? I've been using the Optimism app which has some pretty slick charts and stuff.
ReplyDeleteI just found your blog today and have been reading for hours. I would be very interested to know what tests you would definitely recommend having done. After a year and a half of sickness and research and too many doctors to count, I am overwhelmed and none of the things you've mentioned that I've read so far have come up in my doctors' visits. I have had a lot of tests, just none of the out-of-the-box ones like NK cells or heavy metals or methylation panels etc. etc. I just want to go to my GP and say, "test me for this, this and this..." Thank you for putting all this info out there!
ReplyDeleteElizabethMilo.com
Hi Elizabeth. It sounds like you and I got sick roughly around the same time. This is a tough time of adjustment, isn't it?
DeleteI wish I was in a better position to advise you on what tests to get, but I'm still sort of figuring this all out myself. The ones that I found most interesting and that showed *clear* abnormalities were: 1) Natural Killer Cells, 2)Gamma Globulins, 4 subclasses, and 3) the methylation panel mentioned above. I actually found the hormones tests interesting too because I was in the low range on some of them. And of course the genetic testing from 23andMe was enlightening.
Sorry to be so formal, but of course I have to say the obligatory warning that I'm not a doctor and that you shouldn't rely on my experiences in your own treatment. Always consult a doctor to diagnose or treat illness.
OK, now that we've got that out of the way (again sorry), we can speak frankly. It's SO difficult to get a GP to order most of these tests. Most people have to go to a specialist who knows at least *something* about ME/CFS. Unfortunately, most of these specialists are "out of network" and don't take insurance directly, but you can get reimbursed if you have a PPO. I just tried to break it down and got for one at a time, thereby spreading out the cost and focusing on one thing a time.
By the way, nice to see another American with an "M.E." blog as opposed to CFS. :)
Best of luck to you. Keep in touch.
I tried the "email me when there is a reply" box, but it didn't work and then I forgot and closed the computer and just realised that I wouldn't know if you replied and I wouldn't remember on which posts I commented... Anyway, I just went through half your blog again and found this, so thanks for the reply!
ReplyDeleteYes, I have to admit I was a little excited to find someone who had been sick approximately as long as I have, using "M.E." and around the same age. ("Excited" might be the wrong word.) This "time of adjustment" has been like nothing I ever experienced or could have predicted. I keep thinking that one day I want to write a book about the different phases of adjustment. It blindsided me in every way ~ physically, emotionally, mentally. I would have done anything to keep my career.
Thank you for the advice (and the disclaimer ~ I should take a page out of your lawyer's book and do the same on my blog ~ but, I've decided we're all each other's doctors. I started from the beginning wanting to put it all out there because, if I'm able to spend 5 hours researching supplements (dosages, prices, ingredients, websites etc.), there are thousands of others that don't have the time, energy, savvyness... don't have a doctor... don't have insurance... don't have an internet connection... I could go on). We need to stick together is my point.
As well as almonds and green tea, you also freaked me out talking about not eating pork or stevia or vinegar, possibly coconut milk, not using my hot tub ~ and, on a different blog, I think, not eating stock or bananas... I'm going to down to apples and chicken for every meal!
I'll be reading. Thanks for doing what you do.
Elizabeth, I'm always excited to meet others with similar stats to mine. Lol, I didn't mean to freak you out about the foods. I know what you mean though, I often get freaked out (or angry) when I read that something I've been eating/drinking for a long time because I thought I was doing something good is actually, possibly harming me. And I can totally relate to the feeling of "what else am I left with?" That made me chuckle.
DeleteCouldn't agree more...we all need to stick together.
My best to you.
I would like to be in contact with you patrick I have certain theory's & advices I would love to run by you!
ReplyDeleteLet me know
Sounds good, Alexo. What is your email address? I will email you.
DeleteHi Patrick, Thanks for sharing all this valuable information. One tested value that Rich left off is the Nuceoside - Adenosine. Do you know what that indicates when it is low mine was 25.7. Most of my results parallel yours with one big exception folinic acid. My Folinic Acid Plasma was 2.0 and WB was 2.7 extremely low. I have a couple of guesses based on my 23andme results (too much methyl folate and mb-12 using up my poorly produced folinic acid). I wondered if you might be able to shed any light on this odd result. I did talk to a snp/methylation doc and she really had no idea either but just recommended slowly picking up my folinic acid intake.
ReplyDeleteHi Anonymous, sorry it's taken so long for me to respond to this comment. I haven't been on my blog in a little bit. But your timing is interesting, because I just updated my blog yesterday to say that I am quitting mtheylation protocols...at least for now. I have had so many issues and problems with implementing them that I no longer think it is worth it... unless I can find a better doctor to help me get around some of my problems.
DeleteSorry, I'm not sure about the answers to your question. I have not idea what low Nuceoside Adenosine indicates. Best of luck finding an answer to that.