First, I think it needs to be explained that health is complicated. Very complicated. I get very frustrated when people ask me why it's been 2 years and I still don't have everything with my health figured out. This question ignores how much progress I've made. It ignores that I do understand a lot about my health. It doesn't allow for the slow, long process of healing years and years of damage to my body. In my situation, I have done a lot of healing in some ways, and in other ways I haven't done enough healing. Because of the healing that I have done, it's a lot easier to see where I still have work to do. There's layers upon layers of symptoms, all of which can have various root causes. Considering the complexity of health, especially my hyper sensitive body, I'm very impressed with how much my doctor has done for me. I'm not taking any drugs, not going through any harsh treatments like chemo, I'm not bed ridden with multiple idiopathic diagnoses, and I'm not hopeless. Supplements, diet, therapies, and exercise are repairing my body. It's incredible! It's truly amazing how the body wants to heal with the support of these natural solutions.
It started with getting several labs: Vitamin B6, Calcium, and Parathyroid. (The calcium lab was the same price as a comprehensive metabolic lab, which includes calcium, so I bought that instead - I'll say something about the results of that later on.)
Quick tangent: I went through RequestATest.com and WalkInLab.com, not a hospital, and had the blood drawn at Labcorp. My labs were significantly cheaper. For instance, my B6 cost me $67 as opposed to $200 at my local hospital. The only problem is that some states do not have a Labcorp or Quest Diagnostics - North Dakota is one of the the states that does not. I was thankful to be able to get these labs cheaply in New Hampshire.
What I found out is that my parathyroid, 4 glands on the thyroid that control calcium in the body, was on the low end of the "normal range" at 16, and should be fine. If the parathyroid is too low, it's apparently potentially deadly. Hypoparathyriod is rare. If too high, which is much more common, it causes a wide range of painful symptoms, but usually means there's a tumor on one of the glands that needs to be surgically removed. I was preparing for the result of being too high and needing to go to Florida for a surgeon - it's never bad to be mentally prepared, right? I wasn't expecting the possibility of it being too low, but thankfully it's probably okay. Calcium is critical to the entire body, so the gland that controls it is just as critical. My calcium is good, at 9.4. While I enjoyed learning about what the parathyroid does, I'm thankful that it's probably not causing my issues.
The vitamin b6 lab, however, was very revealing! Vitamin B6 is a water soluble vitamin, meaning the body should flush out any extra that it doesn't need. This is why I never see warnings about getting too much, but there's all sorts of information explaining why it's dangerous to have too little. The normal range for B6 of someone of my age and weight is 2-32.8. My number was 136.1. I received a letter with my results warning me to seek care immediately for the high level, which made me laugh. Finally, a lab test that shows something useful!!! (An MD told me that I was the "golden image of health" after I had several hundred dollars worth of labs done, that's after insurance, back in 2013, even though I was hardly capable of functioning. She said this because my blood work looked great - so to have a lab that actually reveals something is wrong is a miracle to me! I'm sure a lot of you have been though this too.)
So what does this mean? Was I taking too much B6? I was on a fair amount between a B Complex and a two small sleeping pills that had a little B6 in them, but I wasn't on enough to cause my number to get this high. I didn't take any pills with B6 in it for over 24 hours before the lab anyway. Again, B6 is water soluble - my body should flush out the excess. Something else is going on.
So my doctor brought up MTHFR. I'd heard a little about it. I knew it is a gene mutation that is one possible cause of MCS, but that's all I knew. I had no idea that gene mutations cause metabolic problems in some people, making it so these people cannot eat certain food and can't supplement with certain vitamins. It can also mean these people need to take certain supplements to stay well. There are lots of gene mutations and each mutation has several variants, meaning that there are all sorts of complicated issues with each gene mutation.
The problem with addressing gene mutations is that they were only very recently discovered. The science began with the Human Genome Project about 12 years ago. Because the science is so new, there's so much more research to be done. There's enough information on a couple of the known mutations to help people with them manage their health. For instance, we know that women with a variation of MTHFR can have infertility issues because of it. We know that we can improve fertility by having them supplement with methylfolate, whereas folic acid (what pregnant women are advised to take) can cause major health problems in these women.
What I understand MTHFR to mean is that particular gene cannot process certain B vitamins correctly. Its job is to convert one form of a B vitamin into another form, and when it can't do that, the body can't use the vitamin anymore, and the body can't get enough of the form of the vitamin it needs. This can cause the body to have many minor and major metabolic problems, such as blocking the ability to create enough glutathione (the body's natural antioxidant.) Not enough glutathione means an inability to detox - are you connecting the dots to MCS yet? Back to the gene: This inability to process the B vitamins causes the vitamin to get stored in the body since it isn't being used. This could easily explain my very high B6 level. The problem, is that high B6 in the body can cause a lot of pain. Over time it causes nerve damage, which is very painful. This could explain the electric dull aching pain in my feet (which, for the record, hasn't bothered me in about a week - could it be because I'm addressing the B6 issue?)
What I'm doing to get my B6 levels down is avoidance of B6 and a lot of sweating. I'm trying to exercise more, but I'm either using my sauna or taking a hot bath daily. I'm sweating daily, as much as I can. My doctor also put me on a multivitamin and a B12 vitamin that are MTHFR friendly, meaning I'm taking a form of the vitamins that have been methylated (processed) so the gene doesn't have to process them.
Whew, this is complicated!! I clearly don't understand it all either. I don't need to.
But wait... do we know for absolute certain that I have MTHFR? No, not yet. I'm also having my DNA tested - most of it, not just the MTHFR. The problem is, it might take up to 12 weeks to get my results. I am not having it tested through a hospital or lab, which would be much more expensive and wouldn't test all of my DNA. I'm testing through 23andMe.com. They sent me a little box with a kit in the mail. I spit into the kit, sealed it, and sent it back to them. Very easy!
Yes, 23andme.com is an ancestry company... sort of? It's what they feature, but it's not at the core of their mission. There's a lot of controversy about the company, but none of it affects their ability to give me what I need to know. The FDA shut down their "health results" feature 2 years ago, but just last week, the FDA gave them permission to give health results again through a new feature. To be clear: I DID NOT choose them to get health results. I'm very curious to see what they'll say about my health, but I'm not going to rely on those results. I chose them because they test most of my DNA for only $99, then sends me the raw data. The FDA won't let them interpret it, so I need to get it interpreted. I plan to use GeneticGenie.Org. This is incredibly cheap! I'm also excited to go through 23andMe because they're collecting DNA for research. They're trying to revolutionize how to accumulate enough DNA to learn about it on a mass scale. This will hopefully make huge advancements in our medical knowledge and ability to make medications. I'm really excited to participate in this project! No, I'm not worried about privacy issues - I'm happy to be used for research to advance health care.
If you want to learn more about gene mutations, I encourage you to do some research. There's a lot of misinformation on the internet about it, as with anything, so I recommend starting with Dr. Ben Lynch's website for information, as he's a leading researcher: MTHFR.net
Once I get the results, have them interpreted, and change my life accordingly (which I've already begun doing, just in case,) I'll write a follow up.
...Okay, I want to get back to lab results I mentioned earlier. I bought the Comprehensive Metabolic Panel. Click on the link to see everything it tests for. I had one thing that was low and another that was high, simply showing my kidneys have some trouble (which I already knew), but it's nothing we're going to worry about. Everything else was good. What I want to point is that my protein level is great:
I eat mostly animal protein in my diet and have 2 protein shakes a day. Meat is my primary food, everything else I eat in small quantities. (I've made this clear in past posts, but I'll say it again: I strictly eat grass-fed, pasture raised, clean meat from good farming practices.) I've been eating this way for 2 years. If my meat diet wasn't working for me, this result wouldn't be so good. I AM NOT advocating this diet for you. My doctor is having me eat this way because he got to know what my body needs, and he's working closely with me to make sure it's working for me. You might have very different dietary needs than me. We're all unique. I can't go vegan without getting very sick, whereas some people I know feel their absolute best on a vegan diet. The reason I'm pointing this out is because I've received a lot of criticism about my diet, mostly from people I know personally who have watched me eat this way.
Was this post too long for you? Sorry. I didn't even say half of what I could have said. :) I'm done now! Thanks for reading!
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