More cooks in the kitchen

29 Jun

The past few weeks have been quite interesting in terms of “What’s next?” Fortunately, I have taken some much needed advice to relax and stop pushing so hard for the epitome of “recovery”. I am doing yoga every day using various YouTube videos I pull up. If I don’t get to it in the morning, then I make sure to do a gentle relaxation sequence in the evening before bed. I have been a frequent visitor at the local library pouring over various books on Alternative Medicine, GI health, and different healing diets. I also added two more cooks to my wellness kitchen.

The is no cure for the medical struggles that I face on a daily basis, but rather, I am learning to work synergistically with my body to promote wellness. Forcing my body into my ideal of “recovery” was an epic fail.

I had been working with a local functional medicine doctor who had a brilliant reputation. He definitely helped me get to where I am right now with some supplement recommendations, but unfortunately my time under his care was short lived because I quickly outpaced him in the research department. He referred me to a local woman who is known as the functional medicine guru, seeing nearly 40 hours of patients per week in her office. My consultation with her went wonderfully and I felt completely at ease explaining to her the various frustrations and roadblocks I have found myself up against lately. She knew what I was talking about when I told her that I suspected I had an issue with sulfation and methylation and was shocked that I hadn’t yet been tested for a gene mutation known as MTHFR. Dr. Guru (not her real name!) told me that she loves a challenge and was going to stick by me to see me through this.

So about that mutation. Several of my friends have lovingly coined it the “mother f*cker” gene. And really, that’s kinda what it is. A royal pain in my ass. The mutation is actually fairly common, but there are degrees of severity and naturally I get stuck with the sucky version. This flow chart explains it at a glance.

I emailed my mitochondrial disease specialist recently and asked to be worked up for this mutation. Several weeks ago a fellow mitochondrial disease patient called to chat me up about various issues and she mentions this mutation. I had read about it in the past, but hadn’t given it much thought. She told me that she had been following my blog and that some of my issues resonated with her due to her mutation status. MTHFR is a fancy string of letters that basically means the body has trouble metabolizing folic acid and other B vitamins. This type of metabolic process is known as “methylation” and it is incredibly important for healing, detoxing, and clearing heavy metals. I felt it was important to get worked up for this mutation because one of the standard treatments for mito is high doses of folic acid. If my body isn’t metabolizing it properly, I’ve been essentially poisoning myself for the past 18 months! I found it strangely suspect that I developed an intolrance to my B2 a few months back and my B12 has been off (too high or too low) for years now.

The results came back positive for a mutation on not one but *two* parts of the MTHFR gene – 677 and 1298 (these numbers are just used to identify where on the gene the problem is). I dove into the research, stopped the folic acid and came across Dr. Ben Lynch at I was concerned because my mito doctor had told me I needed monthly B12 and insanely high doses of methyl folate daily. Something didn’t seem right with these recommendations and since Dr. Lynch is considered an authority on MTHFR and I have been so sick the past number of years, I decided he should be on my team. I’m not messing around anymore! I had the opportunity to consult with him earlier this week and he was incredibly helpful in providing insight into my situation. He knows what he’s talking about and he was able to give me real suggestions to help progress things in light of this new information. Oh, and he also agreed I could have had serious issues if I had followed the mito doctor’s recommendations. Just sayin’.

So what am I doing now?

  • Moved turkey to Day 2 on the rotation so poultry is on the same day
  • Cut out lemons since they were clearly causing a reaction
  • Moved probiotic to after dinner to help keep it intact on the way to the gut
  • Began increasing my l-glutamine by 1/4 tsp
  • Stopped the folic acid
  • Replaced my Mg Oxide with Mg Malate (Mg Oxide is very poorly absorbed by the body, pretty much any other Mg is a million times better!)

My short term plan is to:

  • Begin castor oil packs as per Dr. Lynch
  • Add slippery elm to help heal the gut further as per Dr. Guru
  • Begin making bone broth

I have been doing lots of reading on the healing powers of bone broth and have decided to give it a whirl. I have been hoarding turkey bones and have even found a local farmer to get chicken feet from (I know, gross, but they produce the best broth I’m told!). My tummy has been a bit unhappy with all of the supplement changes lately and my “anti-probiotic” rash appeared once I moved it to after dinner, but all in all, things are moving forward. Slowly. Very slowly. But I am remembering to smile, breathe, and go slowly intentionally because there is no cure. Only wellness. And as Dr. Guru pointed out, my medical issues are only 1/3 of who I truly am.


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