The last few weeks have been trying around here. We've had some serious behavior issues to deal with, I've been sick, and another friend/mentor was diagnosed with cancer, completely unexpected. We are praying hard for the Williams family and know that God is going to do big things through this process; nevertheless, I wish they didn't have to go through this!
Last week, I realized that I still hadn't gotten my gene analysis results back from my blood draw in January. I'd checked over the summer with the company that runs the test and they assured me my doctor would call when it was finished (the DNA is analyzed hundreds of times, so I knew it would be several months). I decided to call my family doctor, and sure enough, the results had been in my file since July! I was a little unhappy about that, but nothing we can do about that. My family doctor took the results home to study them (yes, they are that complicated!) and her nurse called me with the details. I was a little skeptical, so I called my mito. doctor, who wanted to see me to discuss them, and (miracle of all miracles!) he had an opening for Friday! Scott and I had been planning a trip Friday and Saturday to mid-Ohio (looong story on the logic there!) so it worked out well. We had a great conversation with Dr. Cohen (about an hour!) about the results and my health in general. I will go into greater detail at the end of this point for my mito friends, but here are the basics for everyone else: the technology still isn't there yet to figure out my genes... the results are inconclusive. I have 37 variants for the genes they analyzed (for example, if we are to have the amino acid A on that certain gene, I have G instead); most of them are common, a few are uncommon and one is extremely rare. So we are still going with the assumption that this is most likely a mitochondrial disease that simply hasn't been discovered yet, knowing that new ones are being found all the time and the technology will probably catch up in the next decade or so. I asked him about the possibility of rheumatic fever causing these mito. changes and after looking at my labs, he thinks that is a definite possibility. He said you can't have inflammation without your mitochondria allowing it, and yet inflammation can cause damage to your mitochondria. I have had 4-5 strep tests since my symptoms started, and every time it comes back positive even when I hadn't felt sick. It is something we will need to look into, but is outside of his expertise.
I also asked him about my "crash" six weeks ago and how usually I recover after a few days but can't seem to get back to where I was earlier this fall. He gave me four basics for recovering: Sleep, Diet, Exercise, and Nutrients. I didn't realize how much more energy it requires just sitting up vs. laying down, so I am dropping down to the very minimum activity. I am also going to eliminate white sugar, white flour, white potatoes, etc as much as I possibly can and add a few more supplements. I talked to him about the Zija I am taking and he was really impressed by all that is in it. In fact, most of what he suggested is in there! I just need to find out how much of each item is in there to see if it is adequate or if I need to add more. Overall, Scott and I both felt like we learned a lot! Since I have strep right now, we didn't do much the rest of the weekend but it was sure nice to get away! At this point in the semester, he gets pretty burned out so hopefully this weekend gave him the boost he needs to finish strong! Karin
For my mito friends:
Here are the specifics from Dr. C. You probably already know all of this, but in case you don't...
~Three levels of diet: 1) no white flour/sugar/potatoes, etc 2) Mediterranean diet (no corn oil, etc...you can google it for more info) 3) Gluten-free diet He says our (as in anyone) bodies weren't designed to process flour or dairy, with flour being the worst of the two.
~No anti-inflammatory brand name that starts with a T and is the opposite of Advil/Motrin. In fact, he thinks it will be pulled off the market in a year or two because it is bad for everyone!
~Exercise: work our way up to 20-30 minutes of light cardio AND resistance (most forget this part, he says, and it is vital to reducing inflammation) Start with 5 lb and work your way up.
~Nutrients: Not sure if this is for all of us or specifically for me... Zinc 25 mg (make sure not to get too much or causes anemia), selenium 100mg, Gamma vitamin E (NOT alpha, as we don't tend to absorb it as well) 400iu, levo arginine 500-1000iu divided, levo citrulline (sp?) 250iu 2x/day. methionine 500iu, krill oil (Dr. Mercolla's brand is what he rec) 1 cap 2x/day, Norwegian cod liver oil (Carlson's) 1mL
Like I mentioned before, most of those are in the Zija I take, so I will probably only need to add the last 2-3.
~Rest and plenty of fluids! He went into specifics on how much more energy it takes to sit up vs. laying down but of course I forget the numbers! :-)
Thanks for sharing the Dr. Cohen visit information. My wife and son are seeing him early January. The more ideas we have about what we can expect the better. Could you recommend any hotels/motels in the Akron area? We wanted to make reservations early since it's around New Year's.
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