It's been a while since I've posted an update on my health and this is going to be a long one. I will post a follow up after I get my lab tests back. A lot has happened in the last couple of months and a lot of light bulbs are starting to turn on. My eczema began when I had skin contact with epoxy in 2009. Well the main symptoms anyway that got me to seek a doctor, several doctors, from dermatologists to environmental illness docs to Naturopaths. It took over a year to realize changing my diet had an effect on my eczema. The epoxy contact appears to have triggered something in my body to stop functioning correctly.
I've had other minor health issues before that doctors have never been able to explain and it is all starting to point to methylation problems. And who diagnosed it as a methylation issue? Me. Thank you very much internet! Actually it was someone in a catathrenia support group that brought this possibility up as a solution to catathrenia. Catathrenia is a rare sleep disorder that causes someone to moan in their sleep and take very long exhales, anywhere from 8-20 seconds or so. I start moaning about an hour after I fall asleep and basically don't stop until my alarm or my cat wakes me up. I've also had sleep tests done and tried a CPAP to no avail about 10 years ago. I eventually gave up on finding a "cure". At the time I didn't know there was a name for this disorder and the sleep doctors didn't seem to know anything about it either. It was actually an article on CNN that I happened to see that talked about it. I can't tell you how excited I was to find out it had a name and that I wasn't the only one that did this. I quickly found the yahoo support group which is now nearing 500 members. The unfortunate thing is that I found there is no known cure for it but the good news is that it doesn't appear to cause any health issues, and it doesn't even wake me up and I usually don't know I'm doing it but it's sure to disturb anyone else that is trying to sleep nearby. The more I read about methylation the more I think it may be the key to curing catathrenia and all of my other health issues from the food/chemical sensitivities to all the UTI's I used to get while on birth control.
So what is methylation? I like Dr. Amy Yasko's explanation the best: "The Methylation Cycle is a biochemical pathway that manages or contributes to a wide range of crucial bodily functions, including: detoxification, immune function, maintaining DNA, energy production, mood balancing, controlling inflammation."
Your diet, your environment and your genes are the main things that affect how well your methylation cycle works. The first thing to address is your diet and I changed my diet about 2 years ago and the majority of my eczema symptoms have disappeared but I will get small flare ups occasionally if I eat/drink foods high in sulfur. I rarely eat gluten and dairy these days and avoid processed foods. As for environment, you want to remove products with fragrance oils and artificial ingredients (shampoos, conditioners, soaps, lotions, toothpaste, etc.). Get rid of mold if you have any in your house and use natural cleaning products. I've been doing all this for a couple of years and I've made big improvements but I am still not "back to normal" so I knew there had to be something I was missing.
I think the key that I've been missing is to support my methylation pathway. I did a methylation gene test from Holistic Health. It was not a cheap test at $495 and not covered by insurance. There is another gene test by 23andme that is only $99 and covers most of the same genes plus many more. They just lowered the price from $299 in January. If it was only $99 last year I probably would have gone with that one and not done the Holistic Health test. 23andme doesn't do any interpretation for you like the Holistic Health one but there are websites you can go to to do the translations. I recommend everyone get this test whether you have health problems or not. It could help you in the future. If you have Chronic Fatigue Syndrom (CFS), food or chemical sensitivities, autism, mental problems, memory problems, cancer, diabetes, alzheimers, frequent miscarriages, cardiovascular problems, blood clots, neurological conditions, alzheimers or have family history of any of these things you should definitely take this test. There's a longer list of medical conditions associated with methylation here: http://www.mthfrsupport.com/.
MTHFR is the gene that plays the biggest role in methylation. It processes amino acids and converts folic acid (B9) into methylfolate. Most ND's are familiar with this gene and normally only test for it when a woman has multiple miscarriages. What is not well known is that it has many more implications on the health of men and women. What's also not well known is that there are many more genes that need to be looked at that work together with MTHFR. Each gene has a function and role that it plays in the methylation pathway and it's important that they be addressed in a certain order.
When I first started seeing my ND about a year ago, I requested a B12 test because I had a feeling I might be B12 deficient. I got my results back and was surprised that my Serum B12 and Folate were actually extremely high (Folate was >20 and B12 was 1858) Normal Folate is >3 and normal B12 is 211-946. That means I'm not B12 deficient and in fact have too much B12. I had been eating a lot of meat so that had to be it right? WRONG! This should have been a clue that I'm having problems converting folate and B12. These high serum levels are typical in those with MTHFR because they have trouble converting B12 and folate to the active forms. Serum levels only test the inactive form. It appears my ND did not know this and I didn't know this until recently. It's important you not trust everything your doctor tells you and get copies of your lab tests and do your own research.
The gene test I took shows I have three different MTHFR genes and a slew of other genes that may be causing my methylation issues. The one I found to be particularly interesting is CBS. This gene is responsible for processing sulfites and ammonia from your body. I happen to have this gene and I'm expecting my lab tests to come back with elevated sulfite and ammonia. The good thing is there are supplements you can take to help with the excess. This was a big ah ha moment. I've been having a lot of problems with high sulfite foods/drink. I even wrote a blog post back in 2011 about my sulfite sensitivities. It's important that this CBS mutation be addressed before MTHFR because the supplements typically used to treat MTHFR (Methyl folate and Methyl B12) increases your sulfites and ammonia and if you are already not processing them well, any methyl supplementation may cause more damage. There are other forms of B12 that can be used instead of methyl like hydroxy and adenosyl that those with CBS may be able to tolerate better. I've been alternating between the two and am doing ok with it so far.
Those who don't look at these other mutations and how they play a role in the big picture wonder why some of their patients aren't getting better when they try to treat their MTHFR mutations and CBS is most likely why. I don't want to get into every gene in this post but CBS and MTHFR are the big ones. I also have ACAT, COMT, MAO-A, MTRR and BHMT. All these genes play a role in methylation and could cause health issues if they aren't working properly and I'll probably talk more about those in future posts.
Another important point. If you get the gene test done and you find you have one or many of the gene mutations in the methylation pathway, it doesn't mean you have or are going to have problems. You may not have any problems if you have a good diet and a non-hazardous environment. It's important that you find a doctor that is knowledgeable about the entire methylation pathway or else do lots and lots of reading and watching videos on it. This video by Dr. Ben Lynch is one I've watched several times. I didn't understand half of it the first time I watched it but after a lot more reading I went back and watched it again and was able to understand it more. Dr Ben Lynch has a helpful list of lab tests you can get done that will indicate if you are having issues with methylation and require supplementation. I personally am getting the biopterin/neopterin, urinary porphyrins and ION profile (includes amino acids, fatty acids, organic acids and more) done on Wednesday. This should give me a good idea of which of my gene mutations are being expressed so I know what I should supplement to get my methylation pathway working again.
If you can't find a methylation specialist in your area there are some doctors around that take phone/online consultations that may be able to help you. My ND isn't particularly knowledgeable in this area but she seems willing to learn more about it. I wrote down a bunch of notes from Dr. Ben Lynch's video and noted where in the video it talked about each topic and gave that to my ND and am hoping she watches the video or at least watches some of the sections that I wrote down in my notes. I'm looking forward to getting my lab tests back and starting on supplements to address my gene mutations and am hopeful that it will get my health back on track and maybe even cure my sleep disorder too.
Below are the results I got back from my genetics test from Holistic Health: