It’s been a long time since my last post. I’ve struggled with convincing my current functional doctor to move on and start testing for other things because I’ve been doing all his protocols for the last four months and still am not feeling better. Finally got tested through Labcorp for MTHFR gene mutations and Epstein Barr, which I tested positive for both. I also tested for lyme disease, rheumatoid arthritis, and anti-nuclear antibodies, which were all negative.
So, a little about MTHFR mutations. Methylenetetrahydrofolate (MTHFR) is a key enzyme in the folate pathway and is responsible for the metabolism of homosysteine. There are two common mutations, C677T and A1298C. I have both. If you have just one you can still function, methylate folate, at 70%, but when you have both mutations, it cuts it down to 20%, which is more difficult to deal with. This could very well explain my exhaustion but add to that a raging case of Epstein Barr Virus (positive is anything greater than 21.9, mine was 600) and I’m one pooped puppy.
Next step with my doctor is for me to take three different products containing methylate folate as well as other supportive supplements. I started doing research and decided this might not be the best thing to do, see http://MTHFR.NET/. I went to a nurse that I’m seeing here in Durango and asked her if she was experienced in dealing with MTHFR, she recommended another clinic here who deals specifically with this. They have three naturopath doctors and a biochemist on staff. He said it could be detrimental to treat without checking first for other genetic mutations. He asked that I order a 23andme kit for $99 which he can take the data and interpret for me. This is also what the MTHFR. NET site recommends. So, I sent my kit in today and will wait 4 weeks or so for the results.
I’m hanging in there but realize now more than ever that controlling my stress response and not letting things get to me is more important than ever. I love this quote from a Six Feet Under episode, “Why are you hanging onto your pain like it means something, it doesn’t mean shi*t. Let it go.” Find things to be grateful for and on the bad days just realize it won’t always be that way. Much love!
Katherine Ireland Health Coaching 
I’ve heard about a new ultraviolet machine called the UVLRx that’s being used for Epstein Barr patients. It uses a fiber optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?
Greetings Katherine, just read your posting about EBV and meeting with new doctors for possible treatment. Can you share what has transpired since then.
Have had EBV for over 30 years, diagnosed with Sjofrens, Fibromyalgia and Atrophic Hypothyroidism in 1998, Adrenal Insufficiency approximately 5 yrs ago, MTHFR A1298C – 3 Yrs ago and Gluten Sensitivity 2 yrs ago.
Learning to manage each step in this journey has enabled me to regain more functionality. Currently not taking any pain meds, have more stamina and less symptoms and nasty flares.
Have also managed to successfully treat Micoplasma but struggling with EBV and possible Mold issues. Interested in learning what worked and didn’t work for you.
Sincerely
LadyWillow /;)
Hi, Lynn! I’m still struggling with the EBV….but during the last few months I have gone from about 25% to 50% functioning. There are a couple things it could be. Anthony Williams wrote a book, Medical Medium in which he has a chapter on EBV….made a lot of sense to me and I’ve been following it. One major thing was that eggs feed viruses and I used to eat eggs every day….another was to eat lots of fruit, especially wild blueberries, bananas, dates, berries of any kind, papaya…lots of veggies of course. The other thing is L-lysine for sure. You can read his chapter without buying the whole book at GOOP http://goop.com/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/ The other thing I did that gave me more
energy was add a little Rx of T3…..and of course pacing….the support groups and instructions at http://www.cfidsselfhelp.org/ are great!
Sorry, I haven’t posted in awhile. I’m a little more functional but still struggle. I recently decided to stop most everything and am doing an on line course through Toby Morrison who had CFS and glandular fever and shared how he got better. They also offer coaching via Skype as he’s in Australia. I like this because it’s positive. It’s all about you taking responsibility, listening to your body, finding your baseline (which is the place where you don’t increase symptoms) then very slowly include more movement. Gradually, if you honestly stay within what your body can do and add movement you will be able to do more and eventually get back to where you want to be. I also see an acupuncturist once a week and am looking at trying TRE http://traumaprevention.com/what-is-tre/. It’s all about improving all areas of your life. Letting go of people and things that don’t help your health. Put yourself first. How’re you feeling now?
Have double allele mutation, B12 is integral, went to naturopathic dr. Hydroxycobalmine shots have been essential, MTHFR stops the ability to absorb B vitamins from food and sometimes viatmins, the b12 to the muscle has been integral once a week sometimes twice.
Thanks, Shelley! That totally makes sense and am glad that’s working for you. I’ve tried shots and it doesn’t seem to help me. I kind of got to the point where I decided to stop most of my supplements….I guess I’m a weird case. I decided to just focus on rest and slowly….very slowly, adding exercise….I’m talking starting with only 1 min of exercise bike. There’s a fine line (baseline) where you feel you can function somewhat….find that place and start adding a little movement…..increasing slowly (every 1 – 2 weeks). I know what most people are thinking…”but, I’ll feel worse if I exercise”. I can tell you for a fact, that’s how I felt. But, I didn’t realize if you stop doing everything you WILL get worse….if you do too much you WILL get worse….you need to find your baseline and just go slow…then gradually over time you’ll realize you’re doing more than you could before. It’s been a year that I’ve been doing this and am now able to ride my bike 20 min. Just started a walking routine and am at 7 min. I probably have another year of this slow progression before I’m close to being my old self again. Also, remember you will have setbacks…don’t get too frustrated and think of them as learning experiences or just part of the whole healing experience. I believe we can heal and live a better life. In no way am I saying it’s in our heads…it’s not…but until they get funding and figure this thing out we have to find our own way.