Lab Tests and Gene Mutations

I've been stalling on this post because I've been debating on how to write it, but I think it's time to tackle it. I learned a lot last month when I visited my naturopathic doctor, some of which I'm going to share with you here.

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! 

How I Respond to MCS: Before, During, and After.

I have learned that I need to use my sauna and neti pot after ever shift at work. If I do not, I have agitated sleep full of angry and annoying dreams and I wake up feeling exhausted. I have a headache and some pain while at work, but the real reaction tends to be delayed (like many reactions for me) and hits me hours later. Yesterday I did go for a hike through the trees along the river, a little ways outside of town and away from any car exhaust. I was hoping the fresh crisp air would help as much as the sauna, but it didn't. It just left me feeling very exhausted. I'm still very fatigued this morning.

I attended my university's Jazz Band, Vocal Jazz, and Steel Drum Band concert a few days ago because I was craving to do something "normal" with my husband and this sounded like fun. When my husband and I were students, he was in both Jazz Band and Steel Drum band, so it was nice to go to reminisce. It was located at the main concert call downtown, where the local symphony performs. I knew that many ladies wear heavy perfume at those concerts, as they're dressy affairs, and I know that cloth seating tends to absorb perfume. This was not a dressy event, mostly college students in the audience, so I thought there was a chance I could get away with going. Unfortunately, I had heart palpitations the entire time. I could feel something inside my ear twitching every so often too. I wore my ionizer necklace during the concert. It helped some, and I know this because I had to shut it off for the last 15 because the battery was running low, causing it to hum loudly. I developed a headache and some eye pain after I shut it off. Because we got home late, I did not use my sauna. I just took an extra glutathione and NAC, which helped a little. I had agitated sleep that night too. Was it worth going? I'm undecided. It was honestly so nice to feel "normal" and get out of the house with my husband that I think this feeling overshadowed the MCS reactions.

MCS is so frustrating. It hinders my ability to be me - I can't go places I want, I can't do things I want, and I can't spend time with people I can't trust to be safe. My reactions are not as severe as many people with MCS. I survived the concert hall with lots of discomfort, whereas others would be sent to the ER by it. It doesn't mean I'm not hurting, and I don't want to go to places or do things that cause pain.



This is what I've learned to do before, during, and after exposures in order to recover the fastest:

1. Take glutathione and NAC throughout the day every day. I take 1 of each with breakfast, lunch, and dinner. I take my Naturopathic doctor's brand, but there are other brands on the market. I can't speak to the quality of these brands, sorry.

2. Take extra glutathione and NAC right before going somewhere risky, like church.

3. Wearing a mask (I use Vog Mask) helps some, but some things that cause reactions still bother my eyes, ears, and skin. They stick to my clothes, hair, and skin. It's best to just avoid. There's no armor that works. But if I need to go somewhere risky, such as on an airplane, wearing a mask does help some. (See my review of my Vog Mask here.)

4. Eat protein and fat every 2 hours. I get hypoglycemic, and I've noticed that keeping my blood sugar as stable as possible helps me avoid feeling faint and overly dizzy during a reaction. I used to get the feeling of very low blood sugar, blood pressure, and faintness fairly often, definitely made a lot worse by reactions, but I haven't experienced this much in the last year.

5. I wash my clothes very often. If I go to a risky place, like church or work, I put the clothes I wore in that place in the laundry as soon as possible. Toxins tend to stick to clothes and I don't want to keep wearing what I was reacting to. (I don't know that I have to say this, but make sure you're using natural plant-based detergent that doesn't cause more clothing toxicity. I really like Biokleen's Free & Clear line, both the powder and liquid.)

6. Getting directly in the shower helps, but I recover much faster and tend to suffer less bad reactions when I use my far infrared sauna often. The more often I use it, the more I can tolerate toxin exposure. I've learned to get in the sauna after each shift at work. I sit in it and sweat for 30-40 minutes, pushing out toxins in my skin and increasing my circulation so my body can clean it self out better, then get right into the shower. I bought a $200 portable sauna on Amazon about 2 years ago. It's made in China, and some people with MCS are likely to react to it. A real, full-sized, wooden sauna is always better (they work better too,) but I have no idea which one on the market is best, safe, most effective, etc - the one I linked to is just an example. But I have no problems with it at this point (when I first bought it I probably reacting constantly and didn't understand that MCS was the problem, so I don't remember how it made me feel when it was new - it was when I first started seeing my doctor who's done so much good for me.)

7. Sometimes I opt to take a hot bath instead. I can add salt, clay, ginger, and other good stuff to detox when I take a hot bath (see previous post for more details on my favorite detox baths.) I make sure the water is as hot as I can stand it so that I sweat a lot. I then take a full shower after my bath.

8. Neti Pot. Seriously: Neti Pot. (The ceramic kind - NOT plastic!) I know many of you that I've talked to are afraid of them. Normally I would accept this and help you find a different solution, but in this case, I'm going to keep pushing it. Use a Neit Pot! They do not hurt, you can breath while using it, and it's a very low cost solution for something that helps so incredibly much! I always use reverse osmosis filtered water that's been slightly warmed on the stove. Do not use tap water - you do not want to pour all sorts of contaminates through your nose, such as live bacteria or organisms that didn't get cleaned out at the water processing plant. Pushing the water through my nasal passages simply helps clean out a lot of crap that I've breathed in. Furthermore, the salt that I add to the water stays in the nasal passages for about 30 minutes afterwords. It soaks up mucus and clumps it up so that I can spit or blow it out. Mucus is what traps toxins, so getting rid of the mucus is very important to detoxing. Yes, the water only flows through the nasal passages, but the salt absorbs mucus from all of the sinuses, even my ears. My Neti Pot is a staple for me!

9. Rest. If I don't give my body rest so that it can recover, repair, and recuperate, my body doesn't let me push forward. I can't simply go back to work the next day. Reactions take a lot of energy, energy that I'm short on anyway (chronic fatigue!) I MUST let my body rest for as long as it takes if I plan to keep moving forward in life. Sometimes I only need half a day. Sometimes I need a few days of doing nothing. I have to listen to my body and do as it says.

10. I have to keep my home as safe as possible at all times. I never bring anything into my living space that's risky for me. I don't invite people over. I use my own cloth shopping bags and wash them regularly so that I'm not bringing home the store's bags that are infused with the smell of the store. I vacuum, sweep, mop, and clean regularly. I run an air purifier regularly. I dust regularly. This is not to say my house looks organized: it's not. I don't spend energy picking up after myself, it's poorly decorated, and sometimes looks like I just don't care. I just focus on keeping the home environment safe enough. I only have so much energy to spend.

11. I do have many houseplants. Mold and fungus has been an occasional problem with them, but I stay proactive with my plants. I keep a close watch for the mold and fungus and clean it out the moment I spot any. Otherwise, they're great. Certain houseplants clean the air. Check out this article for more details.

12. I practice a lot of escapism. Instead of giving in to the feelings of anger, agitation, pain, discomfort, anxiety, depression, and other unpleasantness I experience during reactions and periods of poor health, I try to do something that allows me to mentally escape. I do something really risky: I bring my phone into the bath with me so I can read or watch videos while bathing. I watch Netflix while I use the sauna. The reason for this is that if I don't have a distraction, my thoughts get really anxious and dark, and I feel a lot worse and more fatigued. Negative thoughts take a lot of energy, and often times I don't have enough power over the negative mental feeling. So I distract myself with something until the reaction calms down. I spend a lot of time playing video games, reading easy books and graphic novels, and watching my favorite series. These things occupy my mind, which is a huge blessing.

Note about 12: Lots of people have argued that I should be practicing mindfulness, guided meditation, or prayer instead of using distractions. I'm sorry. These things simply do not work for me. At all. I don't have the energy to control my thoughts - these things take a lot more work and stamina than I have to give. If these things work for you, yes, you're probably going to recover faster employing them. They allow for a deeper rest and a better calm. They train us to have better control over our mental and spiritual states. These things are important! But I'm sorry, they're not enough to combat my anxiety and reaction agitation. I tried praying the rosary while in the sauna during a really nasty reaction once. I was shaking with anxiety and desperate to calm down. The rosary should be very calming, reflective, and meditative - it simply called attention to all my problems that I wanted to share with God. It caused me to think about how hard life is, how much suffering we go through, and how I just wanted to be dead to end the suffering. Prayer is a very powerful thing. I strongly believe in God and I strongly believe in the importance of prayer. But I've learned that my prayer isn't effective during my deep anxiety times - it makes me feel worse. I pray when I'm feeling strong so that I can actually calm my mind enough to listen to God. It's a big reason why I'm struggling so much with church - church causes me to react, and I can't focus or be worshipful when I'm reacting.

13: I take care of my health to the best of my ability. I'm taking a ton of supplements , eating a very strict diet, exercising the best I can, practicing avoidance to the best of my ability, avoiding as much stress as possible, etc. I'm doing what I can to heal my chronic illnesses, weak organs, etc. My issues are my own. You need to learn your body and address your body's needs. The stronger our body's health, the better it can tolerate environmental toxins... or at least recover from reactions.

14. I try to spend plenty of time in nature, in the trees or by the sea, away from car exhaust, cigarette smoke, toxic people, city pollution... you get the idea. Nature is the ultimate air purifier. It's the ultimate stress reliever. It also helps me adjust to the changing seasons better. The more time I spend outside, the less traumatic seasonal changes are for me (despite that winter is horrible anyway.)

(Isn't it just calming thinking about being in nature?)

15. Therapies help. I can't say enough about how much chiropractic, acupuncture, and massage helps me. All of these help the body work optimally, all of which will relieve body tension, stress, and toxin build up.

16. I do use a Himalayan Salt Lamp. This is one of my favorite items to sell at the store I work at. It is not enough on its own to help with a reaction, but it does serve an important role for me. The salt releases negative ions into the air to counter the positive ions. Positive ions are harsh on our bodies: electricity/ lightning, environmental toxins, etc. The negative ions clear the air so our bodies don't have to fight the environment as much. They are very calming. My favorite time to use it is right before bed. I read to the light of it. I feel less agitated around it, which is really important in the process of falling asleep.

The ionizer necklace I use works very similarly: it puts out negative ions near my body to help me breathe a little better. It does help some.

(Note: There's a lot of New Age spirituality tied to them, and this has turned some of my customers off from buying one. I've never used it to call spirits, work magic, fortune telling, etc - I don't believe in this stuff, and the lamp has never drawn me in to any type of witch craft. Keep in mind that you can tie spirituality into any object, such as gemstones and minerals. I don't believe in the spiritual properties of gemstones, but they're really pretty and I wear them. Salt is a natural product of the earth, it was around long before humans even existed.)



I encourage you to share with me what helps you! Leave comments on this blog so others can read them too.

Windows and MCS

It's been a full month since my last post. I'm not sorry. I do have a lot to say, but I've needed to take a step back and internalize it first. I've also been in a whirlwind in the last month, so I've not had the energy when I've had the opportunity to write.

I just spent a whole entire month in New Hampshire... again. I was only supposed to go for 9 days while new windows were installed in our house. I didn't want to be home with any fumes, mold, dust, etc. that would make me sick. Well, our contractor was hurt and needed a couple of weeks to recover. I stayed a whole month waiting for the windows to get installed, but as it turned out, I needed most of the time out there for medical reasons. That will be my next post. It's not easy being away from my husband that long, but in the end I'm grateful for the extra time with my doctor.

In this post, let me tell you about these windows: Marvin Infinity. When you have MCS, any home project is a major headache. There's the fear of hidden and obvious toxins that will keep you sick, the fear of off-gassing, the fear of the quality of natural safe materials vs synthetic highly rated materials, etc. I'm writing this post to help anyone with MCS in need of new windows.

We had Brian Fettig install them. They are casement windows made from fiberglass, supposedly the most MCS (Multiple Chemical Sensitives) friendly windows on the market. Supposedly, they have no fumes except for the stain, but they're stained in the shop, not in your home. The advantage for an MCS person is that they do not rot like wood does, they're not made from plastic/ vinyl that constantly out gasses, and they last much longer than other types because they don't warp or deteriorate.

They are not cheap, but we had several companies with different types of windows give us quotes. The wood and vinyl options were only a few thousand dollars cheaper - there wasn't a huge difference in price. I came home the day after they were finished being installed, when my intention was to come home around a week after they were installed. I feared the fumes! And I was right to. The windows did in fact smell. I could smell it in the whole house for a few days, but it was faint. It was less bad than low VOC paint. I can no longer smell the windows at all. That said, I don't know what part of the window was off-gassing. It may have been the factory smell that was stuck to them, or possibly the stain was still smelly.

Our contractor also used fiberglass insulation instead of the spray foam kind, keeping in mind my chemical sensitives. This is my parent's house, not mine, but I'm very grateful for every effort to use less toxic materials since I'm living here now! He also reused our wood frames. The fiberglass stain matches the original wood frames so well that it's hard to tell they're different materials. It's good that he did this not only because it was cheaper, but also because it means less new materials - so fewer potential new toxins.

The reason we had to have new windows installed was because our old Marvin wooden windows were rotting. Yes, literally rotting. There was black spongy rot all over the bottom of the casements, and one of the windows was sliding down in the casement because the bottom had rotted so much. We had to keep plastic shrink wrap up over the windows so that the rot wasn't getting into our air. This rot was actually my greatest concern with the windows, and I did not want to be home when the windows were removed and the rot was kicked up into the air. Our contractor told us that he also found rot inside the walls on the sheet rock. Is there mold? Very possibly. We knew there was mold in the bathroom ceiling, which was replaced and fixed last year. It's very possible I'm living in a moldy house, which could definitely explain a lot of my health problems! We'll tackle this and the siding issue next year.

How am I feeling at home with the new windows and no longer breathing in the rot from the old windows? Hard to say at this point. I actually slept very well and felt better than normal for the first 5-6 days after coming home, but I've slowly been getting worse and worse again. It's probably not our house. It's probably my job, which got much smellier while I was away. I can say that I'm not reacting while at home, except to my bed (that's a huge issue unto itself.)

What I can tell you is that the windows look great! I love the screens (much easier to see through,) the handles that operate very smoothly, how easy it is to clean the inside and outside of them, the tint that makes it hard for people to see in during the day time, and that they are insulating well! We have actually been struggling to cool the house down at night, even when it's cool outside, without opening the windows (which we can do now!) Before, our house cooled down on its own, even when the windows were shut. The real test will be winter, but that's not far away!

I may have to update this post with photos later. It's very hard to take photos of windows when it's bright and sunny outside!