Finding out you have some strange, obscene-sounding genetic variant is no walk in the park. You start searching online and find some blog posts and the odd article explaining it, most of the technical information going right over your head. You find out that you’re not alone – far from it – but the more you read the more you realize just how much of a bugger this thing really is. Nobody can tell you how much or what exact supplements YOU should take. You know you need methylfolate but then there’s all that stuff about overmethylating and methyl trapping…then you find out MTHFR may not even be the most significant issue for you. There’s the transsulfuration pathway and dozens of other SNPs that could be causing problems. It’s doing your foggy head in…
Mine too, actually. I have nothing but empathy for you. Normally I would recommend heading to MTHFR.net to begin your research but after finally having a chance to get through Dr. Amy Yasko’s free eBooks, I think someone just coming in contact with this subject matter will benefit from the way she lays out the material. Then you can visit Dr. Ben Lynch’s site to look up your specific questions and you’ll have a little more background on everything before reading his articles and watching his videos, which are outstanding. The first Yasko book I would read is called Autism: Pathways To Recovery, but it is not just about autism. Everyone with MTHFR and other methylation defects will benefit from reading this and following her protocol. She has some other books in the resources section of her site, such as Genetic Bypass and General Important Information To Guide You on Your Road To Wellness. All of this is good information to get you started.
You’ll also find a lot of helpful information in the files section of the MTHFR Gene Mutation group on Facebook. This is an excellent community where you can find others dealing with MTHFR and many other related health issues. I’ve started a resources page on this site where I will be continually updating links and references that I find useful.
Obviously the best person to talk to about all of this is a knowledgeable doctor or health practitioner who can develop a customized treatment plan just for you. Sadly, these are very difficult to find. Most of the research and information about MTHFR is just coming out and it takes many, many years for research to be absorbed by the mainstream medical establishment. Some of the doctors I have spoken to have already written off MTHFR. For them it has come and gone, dismissed as a cause for many of the problems that thousands of people with MTHFR are suffering from. I’ll be getting into this more in my next post, but I’m here to tell you that from what I’ve seen in my life so far, MTHFR is not something to be taken lightly. In fact, genetic mutations are responsible for a host of health ailments. It’s not necessarily the mutations themselves that cause problems but the combination of genetic mutations and the environment of the person who has them. Factors like diet, lifestyle, toxin exposure, bacteria and viruses all play a part and thus gene mutations can essentially be turned on and off depending on your exposure level and by vitamin and mineral deficiencies.
The good news is that you’re here. You KNOW about this health problem. There are thousands of people out there just like you (such as myself) who are now aware of this problem. Some wonderful doctors have taken MTHFR seriously and are prepared to help you. The key is to find these people and learn as much as you can every day about prevention and improving your own health outcomes. For me the greatest difficulty lies in the world around me. There are so few packaged goods that I can eat anymore, restaurants that I could sit down at, products I can use that it’s become overwhelming. But that also means that I can put blinders on to all of them. I move through the world seeing only what is good and healthy for me now. The rest blurs in the distance. A healthier you is ahead…you just have to reach out and take it.
Many people dismiss “Dr. Google” but I’m not one of them. While I don’t advocate running online searches for your symptoms and then assuming you have some illness based on what you read, sometimes you have to do your own research. Learn how to become a better online researcher. Ask lots of questions even if they seem silly. Yes, you do have to be aware of what people are telling you and double check information. But one should already be doing this in every aspect of their lives. Reach out to others and talk about your health issues – you’ll find lots of supportive people online who are dealing with similar problems and will be happy to assist. When it comes time to present information to your doctor, find published scientific studies instead of just articles from websites that may or may not be seen as “legitimate.”
I found doctors who could help me by talking to others and doing diligent internet research. It was trial and error but I finally feel like I am getting the help I need in my life right now. My primary doctor works effectively with fibromyalgia patients so perhaps looking for those doctors in your area is a good step. There are several doctor lists on the various websites or give a shout here with your local area and I will see if I can help you find someone. Sometimes, unfortunately, getting good care means traveling a long distance. I would be prepared to do that if you cannot handle this on your own and there is nobody nearby to help you.
What books, websites or studies do you recommend for others with methylation gene defects?