Showing posts with label gene muations. Show all posts
Showing posts with label gene muations. Show all posts

Monday, July 25, 2016

Book Reveiw: Tox-Sick by Suzanne Somers

Several months ago my parents showed up at my place of work and handed me a book: Tox-Sick by Suzanne Somers. Yes, the author is the creator of the Thigh Master and was on Three's Company. She has become one of my favorite celebrities because of her work on educating the public about mold toxicity, multiple chemical sensitives and environmental illness, poor thyroid health, and the importance of eating organic.

It took me months to read this book. Between the brain fog, fatigue, inflammation, and generally feeling unwell, I've been finding it very difficult to read at all over the past couple of years. I read this book faster than any others since I've become sick. It was very engaging for a book on health, and my brain was hungry to learn more about how to heal. I read a couple of chapters about 3 times before I understood what they said, but it was worth struggling through processing the words. Understanding this, I hope you forgive me if I forget something or misrepresent something in this review.

I highly recommend that everyone reads this book, even if you're not sick. It will open your eyes to how you can protect not only your health, but the health of those around you. If you care about and respect humans, you'll want to read this book. It's certainly not the only book with this type of information, but it might be the easiest to read and understand. The entire message of the book boils down to the dangers of environmental toxicity common in our every day lives, how toxins are the root cause of most chronic illnesses (even affecting genes that cause illness), and how to protect yourself in this toxic world we've created. It sounds like a conspiracy theory until you read about the actual science behind it - there's actually quite a bit of research, much of which even the CDC and WHO acknowledge.

As I first started reading I was a bit worried it wouldn't be anything new, other than her personal stories of mold and toxin exposure causing her cancer and bloating. She spends many many pages slowly prepping the reader for what's to come later in the book, gently asking you health questions and lifestyle questions to motivate you to want to change your habits in order to become healthier. Because so much of this long introduction wasn't new to me since I've already been living in an environmental health nightmare, I ended up skimming over the rest of it.

What was helpful to me in this introduction was her granddaughter's story. Her 14-year-old granddaughter went to a clinic in Florida that I had been curious about. I quickly found out that only celebrities can afford the clinic, but the way they treat patients is something I hope other clinics can learn from. Her granddaughter's story was heartbreaking, but she was able to recover because of this clinic.

The majority of the book is long interviews with doctors. She interviews Nick Gonzalez, M.D. (may he RIP); Sherry Rogers, M.D.; Stephen Sinatra, M.D.; Gary Gorden, M.D.; Ritchie Shoemaker, M.D.; and Walter Crinnion, N.D. While the topic of each interview might not be new to people with environmental illness, many of the details were. I learned quite a bit from each of these doctors, even though I've read up on some of them before reading this book. Each of these doctors explains some root causes they've found in patients as well as offering advice for recovery. I'll include a photo of a page from most of the interviews, so you can get a taste of what the doctors have to offer in these interviews.

Dr. Nick Gonzalez's interview made me want to see him as a patient, but sadly, he's one of the over 50 holistic doctors that have been murdered in the past year (you can read more about this on the link in the last paragraph.) As a cancer doctor, he talked quite a bit about organ health. He digs into gut health, especially the role of bacteria in fighting and preventing cancer. He explains how environmental toxins, especially mercury, messes with our gut bacteria and stem cells that we need to sustain our life, which promotes the growth of cancer cells. He digs into the concept of "leaky brain," which is an issue of a compromised blood-brain barrier. His suggestions for healing are mostly focused on liver cleanses, and so he's a big fan of bentonite clay and coffee enemas. I was a bit skeptical of these suggestions at first, mainly due to assumptions about lead in the clay and coffee enemas being harsh on the colon, but it inspired me to do further reading on the subject. I'm much less skeptical the more I read up on these treatments, but I think that's for another post.



After his interview she digs into the rising issue of gluten sensitivities, borrowing research from some of the leaders such as Dr. Perlmutter (author of Grain Brain.)

This leads into an interview with Dr. Sherry Rogers on Environmental Illness. Her back story is very interesting. She went into Environmental Heath after formaldehyde poisoning from working on cadavers in medical school. She later was told that as a 35-year-old her bones looked like those of a 78-year-old's. She found out that the only way to manage her chronic pain was to eliminate all nightshades from her diet, even the spices like paprika. She had been through a lot, and it lead her to writing the book Detoxify or Die, which I'm interested in reading. She digs into Multiple Chemical Sensitivities, thyroid lab tests showing normal results when the thyroid is sick, nutrition problems such as with magnesium, and more.


Next, she moves into a chapter on the heart. This is the chapter that many people are going to feel most resistant to because it gives advice that's opposite of what our government's nutritional advice says. She digs into the necessity of eating saturated fats and the role of cholesterol. But don't just take her word for it or the word of the research she borrows from, read her interview with Cardiologist and Psychotherapist Dr. Stephen Sinatra. He explains how the low-fat craze all started when President Eisenhower had a heart attack. Ansel Keys conducted his Seven Countries Study and found that people who consumed the lowest amount of fat and the least heart disease, and that Eisnenhower ate a high fat diet. Dr. Sinatra then explains that Ansel Keys cherry picked his data to draw this conclusion, not being fully honest in the study, in order to prove his hypothesis. George McGovern was the secretary of health at the time and decided to set into motion the low-fat craze across the nation, based solely on Ansel Key's "research." This is when margarine was invented and "heart healthy" oils like corn oils took over the market. Then the Framingham study came out, showing correlation between high cholesterol and cardiovascular events. The correlation caused a mass assumption that cholesterol was a risk factor in heart disease. Dr. Sinatra then explains that this is when drug companies first started making statins to lower cholesterol. Dr. Sinatra was a spokesperson for statins, being paid very very well to promote their use. He said after a few years of promoting them, he started to see problems.

"Well, after a few years, we were realizing that something was wrong; we made all these changes to our diets, yet the incidence of heart disease was skyrocketing... Because of the food. Corn oil, margarine, and all the other new foods that were trans fats; we had not realized that these fake foods and poor quality oils were dangerous. What an irony; we gave up butter and steaks and got sicker and fatter! Then I had an epiphany relative to statins; I realized I was barking up the wrong tree. It was in 1993 when I read an article showing that statin drugs diminished CoQ10, which is a vital nutrient made in every cell in the body and is a major nutrient for the production of cellular energy. Also CoQ10 is critically important for the strong pumping action of the heart. I had started using CoQ10 with my patients a decade before, in the early 80's, and was very impressed; I was able to avert a heart transplant with a patient I put on CoQ10. So I had to ask myself this question: How can a statin drug that's supposed to be so good for the heart deplete it of CoQ10, the most vital nutrient for the heart to survive? It didn't make sense! Then I discovered that Merck Pharmaceuticals had a patent on CoQ10 in the same pill called Lovastatin or Mevacor, meaning they knew that statins would deplete the heart of CoQ10 but kept it hidden from the public. So I had to wonder, if Merck knows about this situation, why don't they exercise the patient? ...Probably because the drugs were selling so well, and the doctors had been convinced to believe they were so safe. ...Why alert people to a problem when the drug is the darling of the industry? ...Statin drugs are some of the top selling drugs in the world."

He then goes into much more detail on how to naturally treat heart disease and how fat is actually necessary to keep the heart healthy. VERY eye-opening interview!

Next, Suzanne explores the thyroid, digging into hormone replacement drugs too. This prompts an interview with Dr. Garry Gordon, a functional medicine doctor recognized for his expertise in chelation therapy and antiaging medicine. This interview, for me, was the weakest of them all because I've already done so much research into synthetic chemicals that are endocrine dispruptors (act like hormones in the body.) This is a fantastic interview for people who have not read up on this subject.


She then moves onto Dr. Ritchie Shoemaker. If you have been diagnosed with mold toxicity, I would be surprised if you haven't heard his name. He is behind the Shoemaker Protocol, and he is the world's leading researcher on mold toxicity. This interview made me angry, but more than anything it made me feel overwhelmed. The amount of energy and MONEY it takes to do follow his protocol is beyond what I can afford. Even if I had the money, how could I possibly do all the the work? What's going to prevent me from getting mold toxic all over again, when I'd then have to redo the entire program? Even though this interview left me feeling scared due to the reality check, I think it's one of the most important chapters in the entire book. Mold is a reality that every person faces today, and mold is not the same problem it was even 50 years ago. This is the first thing he says in the interview:

"Thank you, Suzanne. Well, that's a series of questions. The Leviticus discussion about indoor mold is one that people always will talk about, but we know that there were some rather dramatic changes in fungi (mold) beginning early in the '70's. The Pittsburgh Paint Company started adding a fungicide to paint so that it was easier to clean and therefore easier to maintain. The particular compound created mutations in fungi, and just about all the players that make people ill indoors now come out of this mutated line. The toxic compounds made by these mutated fungi I worry about having a different shape compared to the same compounds made my earlier generations of fungi. Our immune systems recognize this compound as foreign and create a much greater immune response to them than they did in the unmutatd form. So the simplest answer is no, the fungi we had then are not the same as they are now."

This interview is dense - very dense. He goes onto explain that 25% of the population have certain HLA genes that cause those people (of which I am one) to have a harder time detoxing from mold. He digs into how so many chronic illnesses are diagnosed as other diseases, like Parkinson's, but are actually caused by mold. There's so much information here that I can't possibly cover it well enough in this review. If nothing else, go to the library, find this book, and read this chapter.

Finally, she interviews Walter Crinnion, N.D. This interview focuses on how to clean up your home environment in order to heal. I read this chapter last night and I honestly can't remember enough of it, except that he's the scientific researcher for a certain enzyme brand that we sell at the store I work at. What really stood out to me in this interview is how he advocates colonic irrigations. Colinics have been my favorite therapy of all because they give me immediate relief and help my MCS more than anything else. I'm less reactive after a few colonics, until I accumulate more toxins in my colon. He really digs into the effect of toxins on gut health, the methodology of Natuopathy vs Western trained doctors, and how toxins affect the immune system. He explains the role of air purifiers, such as which types are worth it and which ones are not. He made a strong case against carpets:


The last pages of her book focuses on supplements she personally recommends, an appendix, bibliography and citations, and index. I skimmed over most of this since my doctor already has me on the supplements that are working for me, and I was very tired at that point.

I strongly encourage you to buy this book and read it. STRONGLY. There are some fantastic books out there that explain this information in better detail, but this book is so easy to digest and understand. It's so easy to share information from it with family members and friends. It's not daunting, and it's so packed with lots of valuable information.

Overall this book left me feeling depressed about the state of our world. What have we done to our world? It's horrifying! It feels like a 50's sci-fi movie in which humanity slowly dies off from a chemical invasion, except that it's actually happening. We're allowing it to happen. In fact, so many of us have bought into the idea that we're better off and healthier because of all the synthetics in our world today! Follow the money trail, and you'll find nothing but greed, not respect for humanity.

The book is also so important because it gives us this reality check. We need to understand the assault on human health so that we can protect ourselves from it. We need to learn the tools to recover our health, which is very hard to do when our environments are so poisonous. It all sounds like a conspiracy theory until you fall sick to chronic illness and no MD can treat you. I'm just one of too many people suffering poor health due to toxicity.

Have you read it? Please share your thoughts below!

Monday, May 2, 2016

Mycotoxins and Mold

My naturopathic doctor recently had me do a mycotoxin test through BiotrekLabs.com. The reason for this is because the lab gave him a test for free, and I got to be the guinea pig and try the test out. If the test was not free, I highly doubt I would have had a mycotoxin test done. As it turns out the test showed I have "alarmingly" high levels of all mycotoxins in my body:



I was given my actual numbers over the phone, and I can tell you they up to 3x higher than the top of the range. This is alarming - I was really surprised. Many thoughts ran through my head: Why isn't the mold killing me? Since aflatoxin is one of the most carcinogenic toxins known to man, why don't I have cancer when my body is full of it? Why am I not suffering a daily bloody nose, which is my typical allergic reaction to mold (I tested very high in allergies to most molds many years ago.) Wouldn't my symptoms be A LOT worse than this? Sure, I can hardly move some days, but I'd expect to be completely bed ridden with results like these!

Let's back up a little bit. The company who makes the test is not the most reputable, and accuracy is a concern here. For a $650 test I would expect highly reliable results. These results could be very accurate, but there's reason to question it. That said, it's no surprise that mold is a major player in my illness, and I do believe I am high in the mycotoxins for several reasons.

I've had some awful mold exposures in my life. I've always been so sensitive that coming into contact with mold would give me an immediate bloody nose with mild flu-like symptoms, while people around me were just fine. I lived on the coast in Oregon for my teenage years, a place that was naturally moldy due to constant high humidity. I could never visit the city of Bend, Oregon without getting very sick. Every single time I stayed the night in Bend, which was at least once a summer, I would end up with the flu after several bloody noses. I think a big part of the problem was that I am also allergic to trees that grow in that area, so it was a double whammy. When we moved to North Dakota from Oregon, we lived in a guest house for 3 months that was not in good condition. My mom and I disrupted a big bush of black mold on a sliding glass door in that house (I call it a bush because it was at least a few inches by a few inches.) Next thing I knew, both nostrils were pouring blood and blood was flowing down my throat. Mom grabbed a mixing bowl to collect all my blood and I filled it at least half full. I wanted to go to the ER, and I was sick with flu like symptoms after that exposure. Years later my husband and I moved into an old house in Boise, Idaho. At first it was hard to tell if there was mold or not - it was old, needed repair work done, but nothing obvious as far as mold. I was getting bloody noses at least weekly, but I tend to get them in Boise anyway due to the dry air. It was in that house that I started gaining weight rapidly, developed arthritis, started to rely on coffee and energy drinks, and felt my physical decline. One day the wall of the shower fell into the tub, revealing lots of mildew. I was very stupid at the time, assuming it was just mildew and as long as the lining of the shower got resealed onto the wall it wouldn't affect us. We lived in that house for 2 years. We moved back to North Dakota into my parent's house (my parents moved out as we moved in.) The skylight in the main bathroom was occasionally leaking, thankfully into the toilet itself, ha! One day it wasn't just a drip, it was an actual stream of water and a larger hole opened up in the ceiling. The repairman said he couldn't find any mold, but when we replaced the skylight we found that the roof board below the skylight was heavily rotted. The bathroom was renovated and sealed up, and the roof was repaired. Shortly after that, we had our windows replaced, and mold was found in the window frames. Thankfully, replacing the windows took care of the mold!

(The mold test kit's results for the main bathroom when the skylight was leaking into our toilet.)

I have a history with mold, as you can read. The question today is this: Am I still living in a moldy environment? My dad hired a company to test our house for mold. The results showed that the upstairs, where my husband and I live, had half the amount of mold as the outside of our house had (which is the base range.) The downstairs, where another family member lives, had double the mold as outside of our house. They called it "slightly elevated." For me personally, "slightly elevated" can mean "not at all safe."

Another clue as my biotoxin illness was taking the VCS Test (Visual Contract Sensitivity Test.) The idea with this test is that mycotoxins build up in our eyes, making it difficult to see contrasting colors. It seems very simplistic, and I'm not going to explain it well, so I encourage you to read about on this site. Dr. Richie Shoemaker (the leader in mold illnesses) highly recommends the test. I tested positive for biotoxins based on this test (the test was free):


We had a new washer and dryer installed this week, and when the guys from Best Buy removed the old washer we saw a couple issues. The backside of the washer looked mildewy, something I couldn't have seen before. The valve for cold water was corroded and leaking, something I couldn't have seen before. They were unable to install our washer because of that valve, so they shut it off so it stopped dripping, at least. We have no way of knowing if it was dripping behind the sheet rock, but it's very possible. But that's when it dawned on me: was I washing my clothes in a moldy washing machine? It was about 30 years old, had a leak, and probably wasn't cleaned properly for years. Are ALL of my clothes contaminated with mold from that machine?

So... knowing my history, you can see why it's no surprise that mold is an issue in my health.

Normal people who get sick from mold tend to get over it and regain their health after leaving the moldy environment. This is probably the least moldy environment I've been in for most of my life. You'd think that I should be improving, but my level was still very high on that test! It was that high after 2 1/2 years of a perfect anti-candida diet (no sugar, no moldy foods, nothing to feed mold), and a 6 month long Candida cleanse (which should have killed mold too.) Either my levels were even higher and they have come down with all this work, or what I'm doing isn't working and isn't killing the mold in my body. (Or the test isn't accurate, but I don't think that's a big factor.)

When I've looked into why my body doesn't recover from mold, I keep seeing research and articles talking about the HLA genes. Apparently, only 25% of the population have these genes, and those that do are highly prone to mycotoxin illness. I've been told that the gene makes it so the body recycles mold back into the body instead of excreting it out like in normal people. I have the genes. *IF* this is true, then how can I possible fight it? I could be recycling mold from when I was a little kid, right? So what hope do I possibly have? If I do mange to kill all the mold in my body, wouldn't I just get sick all over again from new mold accumulation in my body? Mold is impossible to escape!

So I looked at mold treatment options. The first thing that came to my attention is Ozone therapy. Apparently ozone IVs can cause mold in the body to implode, killing the biofilm and the mold itself. It's impossible for mold to survive in ozone. Sounds like a miracle cure that's easy, right? Nope! Ozone is HIGHLY toxic to humans. It's so risky that it's actually illegal, but there are doctors administering it. Strong people can survive ozone IVs, but someone like me? It's extremely risky. You will find many doctors who swear by ozone and its safety, but I am very cautious. Alternatively, I get treatments in a hyperbaric chamber at my Naturopathic Doctor's clinic. This chamber is oxygen therapy, which can do the same thing as ozone, only much much much more safely. The problem is that I don't live near my doctor's clinic, and I'm unable to get treatments more than a few times a year. I have yet to find a hyperbaric chamber anywhere in the city I live in. I've been told to drink food grade 35% hydrogen peroxide, which is essentially the same thing as ozone, but supposedly more gentle. This is not something I'm willing to try without my doctor's support, especially based on what 3% hydrogen peroxide did to my mouth (check out my black hairy tongue post.)

The next option that was made aware of is the Shoemaker Protocol. I had several people tell me it's the ONLY option for treating mold, and all the mold support groups I've looked into treat this protocol like the Holy Bible of mold toxicity. It's so popular you'd think it has a high success rate, but I keep digging and digging through the internet and can't actually find much about the success rate, just people claiming to feel better and people claiming they can't tolerate the protocol. The protocol seems to be a mixed bag. From what I'm reading, there are plenty of people who do not do well on this protocol specifically because of the main prescription medication: Cholestyramine (CSM). It's a cholesterol drug. This raises red flags for me. First and foremost, my cholesterol should not be lowered! Secondly, I don't tolerate medication well - my body readily rejects most medications I've tried. Thirdly, negative reviews of this drug for mold toxicity are very negative. It causes severe constipation, and you must take it with a laxative, causing a great deal of distress for many patients. It also absorbs nutrition from your food and supplements, so you must be really careful about how to take the drug so that you don't malnourish and dehydrate yourself. I hope you can understand my hesitancy to consider this protocol! I understand that when it works for someone it works very well in that it makes them feel better. But what I don't understand is why this prescription drug could possibly be more effective than natural binders like Zeolite, Activated Charcoal, or clay?  Dr. Shoemaker claims that they don't bind to the same toxins, but why not? I plan to do a lot more reading up on this protocol since it's pushed so hard by mold patients, but I think I need to remain skeptical. Listen to or read this really wonderful interview on this protocol by Dr. Shoemaker himself.

The other option I was made aware of is a protocol by Dr. Nick Gonzalez, may he R.I.P., as outlined in Suzanne Sommer's book Tox-Sick. (I will write a separate post on this book once I finish reading it, but so far I highly recommend it.) He advocates for regular coffee enemas and far infrared sauna treatments in addition to taking food-grade bentonite clay daily. He claims that the clay's magnetic charge and honeycomb structure makes it an excellent binder to absorb mold and carry it out of the body. I'm intrigued by this, especially since I know how much better I feel when I take activated charcoal regularly. I also found this study about the effectiveness of clay on aflatoxins in humans. I see problems with this plan, though: dehydration and heavy metal toxicity. Apparently there is less lead in the clay than in some nuts and vegetables, and apparently it's not a bioavailable lead. I'm linking to Wellness Mama on this one simply because I'm having a very difficult time finding actual studies on the risks of the heavy metals in clay - even the FDA approves bentonite clay as a safe food additive. Maybe my hesitation about food grade clay isn't well founded afterall? I have been using bentonite clay on my skin and as a toothpaste for a couple of years now and absolutely love it. As for the coffee enemas, I'm interesting in trying. I get colonic irrigations a few times a year at my doctor's clinic and they are exceptionally helpful! Enemas won't be nearly as good, but I'm curious because I can do them at home. I already use my far infrared sauna many times a week at home (I haven't written a post on this - what's wrong with me!?)

I'm glad my naturopathic doctor had another option for me. He put me on a homeopathic nasal spray with oils designed to kill mold in my sinuses. This is not a full solution, but we just want to see what happens. Mold loves the sinuses because they're a dark humid place, so starting by killing the mold in my sinuses makes sense. The spray is also designed to desensitize me to mold homeopathically.  It's a bit intimidating spraying trace amounts of black mold into my sinuses, but I'm not foreign to the concept and have had good results with this type of treatment in the past. For now, I'm content to address my mold issue with this nasal spray while I work on making my house as mold-free as possible. Ideally I'd be able to do a hyperbaric chamber regularly too, but at least I can stick with my diet and my sauna to continue to kill off and sweat out the mold in my body. I might even consider the food grade bentonite clay, after a lot more research and talking about it with my doctor. I need to go slowly, and I like that this is a very gentle start to killing off the mold in my body.

Thursday, February 4, 2016

The CBS genes

I am certainly no expert on the subject of epigenetics - it's a very complicated and very new field with incomplete scientific research. What I share with you here is only my own reasoning based on the research I have done and personal experience. I may not dig into the issue as deep as you want me to - I could try, but because I simply am not educated on the subject, I'd prefer not to speculate too much and lead you to false conclusions. That said, I hope that what I have learned is helpful: I hope it helps you decide on getting DNA testing or helps you understand your results.


I'd like to start this post with a screen shot of something I just discovered on my Livewello.com report. The reason I'm sharing this is because this could go hand-in-hand with the CBS gene issue I want to talk about - but this is only speculation. I don't know how to really talk about this at this point in time, but wanted to point it out to you readers. This screen shot shows that I am either heterozygous or homozygous for main genes associated with fibromyaliga, chronic fatigue, and gut issues. Gee, sounds familiar! I have all of these diagnoses! But, genes ONLY point to lab tests you should get. They don't prove you have anything. Since I already have the diagnoses, maybe the DNA testing just backs them up?


CBS Genes




Here's my situation:


I know that my CBS genes are expressing without the use of lab tests because it's simply obvious. I was having trouble with sulfurous foods for at least a year before having this test done, but the trouble was I didn't know it was sulfur causing the problems. DNA testing helped me figure that out. My Vitamin B6 level was extremely high a few months ago (I don't know if it still is since I'm actively working to lower it, but I need to have it retested soon.) I also suffer mild - moderate multiple chemical sensitives, which I can control by taking enough glutathione. I haven't been officially tested, but based on all the clues, I'm probably deficient in glutathione. CBS genes are primarily responsible for processing sulfur in the body, but they also greatly affect B6 and glutathione production.

Before digging into CBS more, let me tell you a story to explain why it's so important to understand:

Two days ago I decided to do something that was probably very stupid. I decided to make an almond and coconut flour flat bread for myself. I made up the recipe as I went, thinking I would need enough egg to help it stick together and rise. The problem is that eggs are very sulfurous, and I've had to avoid them for at least a year because they gave me terrible stomach pain. I used 2 eggs in the mix, and ate the whole flat bread (it turned out okay - nothing special.) I figured it had been long enough since I had egg, so I wanted to see what would happen. (That's not entirely true - I've had some almond flour muffins with a tiny bit of egg in them and in small portions I was okay with them, which is what made me think it might be safe to try a large portion of eggs again.)  What happened was a hellaciously horrible <insert swear word here> stomach ache that I never want to repeat ever again! It took me hours to reduce the pain down enough to tolerate it. I was bloated to my limit through my entire stomach, not just the lower gut area. I had cramping pains  through my entire stomach area, as if I had horrible gas, but there was no gas. I was on the verge of vomiting for a while, but that didn't happen because I don't vomit easily (I wish I could have.) I had a hard time bending over because the cramps would get worse. I felt like a balloon that might pop, and I was praying to God that I wouldn't end up in the ER with some sort of burst organ. I had to drink ginger tea, put a heating pad on my stomach, do stomach massage, take tons of DG Licorice, take some extra activated charcoal, and take some extra glutathione. When I finally got some relief in the bathroom, it was obvious my food wasn't well digested. Because I NEVER want to repeat this again, and I know this is an issue other people suffer with, it's important to understand how to prevent this kind of pain.

Coffee, broccoli, cabbage, chocolate, and other sulfurous foods had been giving me the same problems, to a lesser degree. I just didn't know sulfur was the problem until I read up on what CBS mutations mean, then I easily drew the connection to sulfur in those foods.

My conclusion? Sure, MTHFR is an aptly named gene if it's mutated and expressing, but "CBS" looks like a swear word to me too.



What does CBS do?

"CBS (cystathionine beta synthase) is a gene that converts homocysteine into cystathionine. 
The CBS pathway is the gateway into a number of essential biochemical processes. 
The biochemical pathways that follow and are linked to CBS are Transsulfuration and Glutathionine Synthesis.

 It is essential to address that Glutathione (GSH) is among the most important endogenously-produced antioxidants in every cell of the body. Glutathione activity in cells is critical for normal detoxification and defense mechanisms in every cell."
http://drjockers.com/cbs-mutation-low-sulfur-diet/

"This is which is an enzyme responsible for converting serine and homocysteine into cystothionine.  This is the first step of the transsulfuration pathway and it is B6 dependent and a key part of glutathione production. CBS defects are upregulations where the enzyme works too fast which results in low levels of cystathionine and homocysteine and high taurine and ammonia. If there is an NOS mutation along with the CBS it can dramatically elevate ammonia levels.  
Individuals with a CBS mutation will produce more sulfur end products from the methylation cycle. Those with a homozygous variant will most likely need to limit their intake of sulfur containing foods as they will elevate ammonia levels.
This mutation can also affect a key enzyme called G6PDH in an indirect manner.   This leads to altered blood sugar metabolism, red blood cell formation and blood vessel stability. This can contribute to easy brusing, bleeding and broken blood vessels. Nutrigenomic expert Dr Amy Yasko recommends that one support their CBS enzyme for at least six weeks before starting methylation supplements. Without normalized transsulfuration the body is unable to produce adequate glutathione."http://drjockers.com/genetic-testing/

"CBS (cystathionine beta synthase) catalyzes the first step of the transsulfuration pathway, from homocysteine to cystathionine. CBS defects are actually an upregulation of the CBS enzyme. This means the enzyme works too fast. In these patients, it's common to see low levels of cystathionine and homocysteine since there is a rapid conversion to taurine. This leads to high levels of taurine and ammonia. The CBS upregulation has been clinically observed to result in sulfur intolerance in some patients. It has also been observed that BH4 can also become depleted with a CBS upregulation. BH4 helps regulate neurotransmitters and mood."
http://geneticgenie.org/all-mutations/

Got that? Yeah, I agree - it's over my head too, sort of. I can't explain the technicalities, but I understand the point enough to address it. From this point on, I'm only going to talk about CBS C699T because it's the mutation I'm homozygous for. While I'm heterozygous for CBS A13637G, I have not researched it at all yet.


CBS C699T, The "Hole in the Bucket"
"A major problem with CBS up-regulations besides the inhibition of normal GSH activity, is that there may be a very high loss of methyl groups because they are drawn down through the up-regulated CBS pathway. In this way, CBS up-regulations behave like a toilet that is broken: the water does not refill, and instead flows down the drain continuously.


This is a potentially catastophic scenario, because methyl groups are essential for other methylation reactions at other critical junctions. 
Not only would someone with a CBS up-regulation be losing methyl groups, as well as the primary antioxidant defense in every cell (glutathione),
 any additional methyl groups from diet or supplementation could cause a potential surge in CBS up-regulations. The result of this situation is a potential toxic overload of many substances, such as ammonia, sulfite, sulfate and hydrogen sulfide, and whatever else that comes along for the ride."
http://metabolichealing.com/metabolic-gateways-cbs-gene-mutations-glutathione/
My understanding, and I really do not understand the complexities, is that a mutated CBS C699T boils down to a drain in the body's nutrition. It's a "hole in the bucket." Instead of processing nutrition like it's supposed to, the mutation causes a hole in the cycle that ends up dumping nutrition. This is why many doctors associate CBS with B vitamin deficiency, except for taurine, which gets over produced in this situation. Read more about this here.
I, and several others I have met on a B6 Toxicity Facebook group, have the opposite problem - we have elevated b6! Many of us also have this mutation. So how could this be? Is the mutation dumping B6 or not? This is a question I see brought up in many forums, but I don't know of any official research that explains this, except that this page does say you might see elevated b6 on an OAT test in people with CBS mutations. It doesn't elaborate. We know there must be a correlation, because B6 IS what supports CBS mutations in the problems they cause. B6 is CBS's co-factor.

But, b6 aside, I think it's easy to understand that a "hole in the bucket" causes a domino effect of problems in one's health. Losing nutrition at this particular "cog in the wheel" of the methylization process means that other cogs (genes) may end up not getting the nutrients they need to work properly. I wish I knew more details, such as specific problems to look for in other genes, but I don't.


CBS: Sulfur and Glutathione
CBS processes sulfur. When this process is broken, sulfur turns into ammonia. Too much ammonia in the body causes all sorts of discomforts. Ammonia is a toxin, and our body is supposed to be equipped to handle it. After all, bacteria in our gut does release a little bit of ammonia too. CBS is the body's way of handling ammonia, and when CBS is broken... well, we have a problem!

"Ammonia - high levels act as an irritant and may cause excess cortisol and contribute to the downward spiral of adrenal fatigue and hormone problems that is common in so many (euphemism for "virtually all") people."
http://blog.modernpaleo.com/2013/01/homocysteine-mutations-and-sulfur.html

Yes, I have major (to me) adrenal fatigue issues. It's a constant battle. I hope this helps you see that there are layers and layers to these chronic health issues. Adrenal fatigue isn't it's own issue, and it's not just connected to thyroid issues.

Personally, I've found that avoiding all sulfurous foods prevents this problem. For healthy people, sulfur is a necessary nutrient and vital to many processes in the body. I do worry that avoiding sulfur will eventually lead to other issues, but if I eat sulfur now, I get too sick to carry on. What choice do I have?

Interestingly, gluathione, the body's primary antioxidant (extremely important), is a sulfur. CBS mutations block the creation of glutathione, so it means we're deficient. But, shouldn't supplementing it with cause sulfur reactions in the body? For me, supplementing with L-Glutathione and NAC (an amino acid precursor to glutathione production) are absolutely necessary. They don't cause harm, only help me substantially. Before my doctor put me on them, my Multiple Chemical Sensitives were debilitating. I didn't really understand that I was constantly sick due to chemical intolerance until I healed enough to notice that I only felt sick after being exposed to certain things, like artificial fragrances, air fresheners, new clothing, etc. Once my doctor put me on the l-glutathione and NAC, I slowly improved more and more. Now, as long as I stay on high doses, I can often tolerate going out into public without getting too sick - depending on where I go. I still can't go into the mall without getting too sick, but I can go to work at my safe enough job - although too much time there can really set me back. I have to be careful.

I think a fair question to ask is: Are my CBS mutations causing my Chemical Sensitives? I think it's very possible, just looking at the evidence. I also have an immediate family member with MCS that was made much better by L-glutathione too - so it's in our genes. Could it be the CBS gene? This is unlikely the cause of MCS in every person with it - there are other ways to get MCS, such as chemical poisoning.

So why do I do really well with gluathione and NAC, but eggs make me want to go to the ER? I don't have that answer either. Again, this is a very new science, and it's highly complicated. I'm guessing it will be many many more years before doctors, scientists, and researchers have a good understanding of our genome.


CBS and Other Genes

Here's where I start to get really fuzzy. I do know from all the reading I've done that other gene mutations can make CBS mutations even worse. I'm too tired to really understand, so I tend to skim those parts while reading. Instead, I'd like to share a few links that dig into the issue (some of these are repeats from earlier in the post:)

http://blog.modernpaleo.com/2013/01/homocysteine-mutations-and-sulfur.html

http://resqua.com/100001600189727/what-is-a-cbs-c699t-gene-mutation

http://snpedia.com/index.php/Yasko_Methylation#CBS_Gene

http://mthfrsupport.weebly.com/articles/other-gene-mutations-that-must-be-addressed-before-starting-an-mthfr-protocol

And finally, possibly the mot helpful resource of this post, Dr. Ben Lynch's (of MTHFR.net - he's a leading researcher) Webinar on CBS:
https://www.youtube.com/watch?v=iZxjLxnByco&app=desktop


Conclusion

How helpful is knowing this information about my CBS mutation? What does it change? This is just the way my body is, right? Well, for me, knowledge is peace of mind. If I can stop wondering and accept the root cause for my issues, I'm at peace with having the issues. If I don't know why something is wrong, I won't stop researching until I understand. That's just me. It also explains WHY I don't tolerate sulfur, and what the true consequences of eating too much sulfur are. I know that sulfur doesn't just cause discomfort that I can occasionally deal with, it actually does harm my body because of the ammonia build up. I know that MCS is somewhat within my control by taking L-glutathione, which gives me hope. I know that by B6 toxicity isn't a fluke or an accident, I actually do have an internal problem with B6.

It's an answer. Not a complete answer, but a helpful answer. Finding my CBS mutations alone were worth the cost of the 23andme.com testing!

Whew! I'm too tired to carry on. I'm going to go space out in bed for a while.  Please comment with any additional information you can add!

Sunday, January 17, 2016

23andMe.com Testing and Gene Interpretation Services

I really wanted to take time to think through my gene testing results before I shared my experience here. The reason for this was because there was too much to process: the results, the meaning of the results, who can give me the meaning of the results, how to understand the meaning of the results, knowing what to do with an understanding of the results... this is very complicated. For now, anyway. Gene testing is so new that even the best of the best scientists in the field of epigenics don't know enough about what gene results mean. That is not to say that there are not some very valuable things we can learn from the results. What I've learned has been so helpful that it's been worth the cost of the testing.

What I quickly found out is that gene testing is not like standard lab tests. The results don't automatically tell us anything. There's no range to compare your reading to. What I found is that it's best for telling us which lab tests to get. The results are basically a map of your health, and navigating the map can show us what parts of my body's process may not be working correctly, thus pointing us in the direction of specific lab tests to confirm how well that part of the body's process is working. Confusing? Yes, at first.

When I first got my results from 23andMe.com, I expected the experience to come down to either "you have a MTHFR mutation" or "you don't have a MTHFR mutation." I did learn which one is the case, but that's hardly scratching the surface of what I can learn from my results. And that's just the problem. I want to learn as much as possible from my results, but I'm not equipped to study the results.

The problem with the results is that it's information overload. I was essentially handed a textbook about me, but I can't read it. 23andme.com cannot offer interpretation services, they can only give me the "raw data." They now offer certain health reports (what eye color do you have, how well you metabolize caffeine, etc) but they're not that helpful (I will say more about this at the end of the post). So I uploaded my results into a free basic interpretation program on GeneticGenie.Org (they ask for a suggested donation.) This is what Genetic Genie told me (click to enlarge it):



You automatically want to think that red means "bad," yellow means "look into this," and green means "all good." That's not the case. Genes are broken down into SNPs, and each SNP has two parts, one part from each parent. Red simply means that both of my parents gave me a mutated form of this SNP, so both sides are mutated (homozygous.) Yellow means that one parent gave me a mutated part and the other parent gave me a normal part (heterozygous.) Green means that both parents gave me normal parts. It's possible for a gene to have some mutated SNPs and normal SNPs. All of this is beyond me - I'm not a biologist. I just need to know the terms in order to do the research. You might be thinking "red means both parts are mutated, therefore that's bad, right?" Maybe. Just because an SNP is mutated does not mean it's causing problems in the body. Red means it has the highest chance of causing problems, yellow means a moderate chance of causing problems, and green means lowest chance of causing problems.

Basically, red markers tell me to look into what the normal function of the gene is to find out what the gene regulates in the body, and then order lab tests of what the gene regulates. Abnormal tests will tell me if the mutations are causing problems or not. Obviously it's more complicated than that, but this is the basic take-a-way.

So, my GeneticGenie.Org results tell me I have no reason to worry about MTHFR, because my SNPs are not mutated. But I couldn't help being worried about the homozygous SNPs, and wanting to understand what those SNPs do launched me into researching beyond MTHFR. GeneticGenie's results were not enough for me. The site only interprets these core genes, and there are thousands more. What I didn't understand in the beginning was that the vast majority of gene results will not matter. It wasn't until I read this interview with Dr. Ben Lynch (the MTHFR expert) that I understood that only a few gene mutations are worth worrying about.

Even though Dr. Lynch explains that most gene mutations don't matter because only the core genes cause major health issues, I still found it very worth while to dig deeper by uploading my raw data into Livewello.com. The basic service costs $20, but that's cheap for what you get. After that, you can pay a monthly subscription to get additional reports (new reports come out each month) about your health based on your results. Livewello interprets all the SNPs that 23andme.com tests, which is overwhelming. Looking through my results lead me down rabbit trail after rabbit trail, stressed me out, and exhausted me. If you choose to get the testing done, I highly recommend livewello, but I DO NOT recommend stressing over the results. Don't get overwhelmed. Take it in slowly, and then let most of it go. Seeing the livewello results might make you feel like you're dying. You'll scroll through a sea of red and yellow, ignoring the green, and it will worry you. STOP. If livewello's results are scaring you, you're using the tool wrong. Remember: it only shows you a map of your body, where red markers indicate that there could potentially be a problem, but it's not guarantee of a problem.

The best part about livewello is that you can click on an SNP or Gene and it will bring you to a page with all the current scientific data about it. It will link you to scientific studies and explain possible health conditions associated with the SNP or gene. It also has a community forum, where people can discuss their experience with each individual gene or SNP. Again, access to this information can be scary and overwhelming, but you're not dying.

You're not dying. The results simply tell you how your body works. It's a tool to help you understand how to operate your unique body with its specific set of conditions. There's no prognosis associated with a homozygous gene!Okay, now that we're absolutely clear on that point (because, again, you can go down rabbit trail after rabbit trail from fear and worry,) I'll show you sections of my livewello results. I can't show you all the results because there are too many!


This is a section of Livewello's report:



This is another section of their main report:

The greatest part and greatest curse of Livewello, in my opinion, is that anyone is able to create a specific report. I can find a report that will show me all my genes associated with a specific condition, such as Multiple Chemical Sensitivity, and see how many of my genes that are correlated with that condition are mutated. The problem is, what if the creator is an amateur and missed some genes? I typically only look at reports made by physicians or based on the rules by a gene expert (you might see something like "Yasko's Detox List" based on Dr. Amy Yasko's research, a leading expert in the field.) And once again, I NEED to stress this point: Just because you have a lot of mutations in your report does NOT necessarily mean you have the condition or will get the condition. It only means you should go get some lab tests.



This is an example of their heath report. They tell you about how you'll react to many drugs, how well you tolerate caffeine and alcohol, etc. With a subscription, you'll get more of these reports each month. I personally found this section to be the least useful for me personally because I don't use prescription drugs (then again, if I'm ever in a situation where I have no option, I know to avoid Warfarin):




(In previous posts I explained how badly I reacted to Cymbalta. The reason why it made me worse, yet can be very helpful for others, might be in my genes! If I were dig through my results I might even be able to find out which genes. This is really cool stuff! I'm incredibly fascinated by this kind of information, and I love all the scientists working on learning more and more about genes.)



Another interpretation site that I liked worked a little differently: athletigen.com. It's free. What it told me is interesting. It's most helpful for people who want to learn how to work out best. I learned that I'm not designed for long runs, but I can power sprint short distances and lift weights effectively. Truthfully, I already knew this about myself, but this is just confirmation. When someone asks me to train for a half marathon with them, I can show them these results and say, "nope, I'm not built for it - not interested." ;)










There are other interpretation service sites, such as promethease.com. It's $5 and it tells you health reports (how likely you are to develop certain diseases, etc.) I have not used it.

I mentioned that I would say more about 23andMe.com's new health reports. While the majority of this feature is only interesting and not very helpful, there is one aspect that some people could find very useful. You can pay doctors quite a bit of money to test to see if you're a carrier of a certain disease or health condition, or you can pay $200 for gene testing and get your carrier status with the results. I am very relieved to find that I'm not a carrier of any of the conditions they test for:





In conclusion...

23andMe.com testing can be very helpful for anyone, whether you're looking for ancestry information (which is a feature I didn't get into on this review, but it's super cool), gene information, carrier status, or health condition information. My motivation was to find answers for some of my chronic health issues, and I'm very glad I did get tested because it has answered a few questions. I do, however, need to work with a genetic expert to understand my results. This is not something I've done, due to financial constraints. It's dangerous to research gene results without an expert guiding you, as it can be very scary looking and make you feel like you're dying. It's also impossible to understand the results without an expert due to how complicated they are. I've learned to limit my research, only seeking out specific answers. Sites like GeneticGenie.org and Livewello.com can help a lay person understand just enough about their results to make some decisions on lab testing, possible supplementation, dietary changes, or exercise routines. 

I will write posts on specific things I've learned, so stay tuned.

Monday, November 16, 2015

Exhaustion

When I get this totally exhausted, depression and hopelessness over take me. This is when I lose my desire to keep fighting. I'm too tired. Just let me give up. Right now I'm working with a cup of green tea AND my doctor's powder that gives me a huge energy boost. I'm still barely holding on, when normally caffeine has too much of an effect on me.

Have you ever watched the second season of American Horror Story: Asylum? The portrayal of the angel of death was very profound, and it feels so true to me. Basically, the angel of death came when a character was dying or begging for death and kissed the character, taking their soul into the afterlife. This angel of death had a few instances where she sat and chatted with a character for a while. "Are you ready?" "Are you sure?" She might ask. She would let the character debate with her. A couple of characters saw the angel of death multiple times before allowing death to happen, pushing her away, realizing he or she still had work to do on earth.

I haven't seen or experienced this angel of death, but the concept is very familiar to me. When I get this exhausted, I feel like I'm at the end of my rope. I feel like the angel of death could appear at any moment asking if I'm ready. If she were real, I possibly would have said a couple of times. I've been that low - no energy to give me any desire to carry on. What's scary is that when I get this low, death is the only thing I can think about. It's so inviting. I'm not suicidal - I have no desire to end my own life. I just don't have the energy to fight for any more, and my natural instinct, which I don't have the energy to fight, says "give up." I can't give up on my own - I don't have the energy to end my life. This is where I feel like I've met this angel of death, in that deep void of energy. In my case, I don't think I'm the one telling her what to do. I think she's the one telling me I'm not ready. When I eventually come around, I agree - I'm not ready. I do desire to live, just not like this. I want my health back so I can really live, not just exist.

And so this is where I find my motivation to fight. I don't want to experience that low ever again. I don't want to waste my life not living. I want, so badly, to have my health. I'm exhausted. I don't have much to give, but what I have I give to trying to reclaim my health. It's been mostly successful - kind of? To borrow from my doctor's analogy about my energy levels: I feel like I'm trying to recover from bankruptcy, and the best I can do is work a part-time minimum wage job. It means I'm finding the strength to get better, but the progress is very slow. What I need is a full time career to get out of bankruptcy, but I'm not capable of getting one.

I'm describing chronic fatigue syndrome (CFS/ ME). I know many of my readers know what this feels like too, and I appreciate that others can relate so we can give each other support, but I'm hoping that those of you without CFS are reading this. I hope you can have empathy and see that CFS isn't an exaggeration or an excuse to be lazy. Trust me, I'd much rather feel lazy than fatigued. They are not the same thing.


......

I know why I'm in this slump: I've overwhelmed myself physically and mentally.

1. I'm applying for disability, and it's a massive burden. Just today I received deadlines in the mail and I really can't handle the pressure - I just want to run away from all this.

2. My weekend was not restful, between traveling, working, and spending too much energy on a long walk visiting my old college (which I wasn't expecting to do.)

3. I have been researching my DNA results, studying the interpretation reports, and joined in some forums. I also decided to join a Facebook group for B6 Toxicity, which I have. What I've learned is overwhelming. It's too much to handle. I felt myself "shut down" yesterday. When I read what these other people are doing to manage and recover, I totally shut down because my energy got depleted just thinking about doing what they're doing. I really need to take a step back - I knew that DNA results just lead to rabbit trail after rabbit trail. I'm too tired to research that much, and I don't care to study genes enough to even be able to research that much. That's not my job - I'll leave that to the experts. But the homozygous mutations that I do have that are well studied? Yes, they are overwhelming.

Yes, I have B6 toxicity, but I'm going to eat my thanksgiving turkey anyway. I do realize that turkey is high in B6, but I don't care. I just can't do all these limitations. Maybe I'll change my mind when I come around, but whatever.


I've leaned a lot. I have answers. I have better instructions. I have new supplements that are better tailored to my situation. This is great, but it's overwhelming. It feels like such a burden.


....

I'm baring my soul in posts like this. It's not the "me" I like to present on social media. We all want to put our best face forward on Facebook, and this isn't something I'd talk about except to people I'm close to. I'm choosing to write these types of posts for a few reasons: I'm too tired to explain my crisis to everyone who really does need to know, I'm hoping to find support, and I'm hoping to support others. By admitting my problems, I'm hoping I can be held accountable and be given support in getting better.

But right now, I'm hardly able to move, but my brain is happily employing the caffeine. Sigh. Did you know that frequent sighing is a symptom of adrenal fatigue? Sigh... yeah, I do it a lot.

Monday, November 9, 2015

DNA Results Part 1

I got my results back from 23andme.com. The important result is that I'm 3% Neanderthal. :)


I'm kidding, but this is a fun fact about myself!

I'm writing this now to say that I'm not sure how to write about my results at this point in time. They are partly what I expected, but mostly a surprise: I do NOT have any MTHFR mutation. I do have 7 other mutations that geneticgenie.org was able to find, and they don't interpret all DNA.

I've been reading the research that's available to learn about my mutations, but there's one massive problem: the research that's available is limited and very new. Genes are extremely complicated, and even the leading researchers are debating about the findings and how to interpret them. MTHFR is the most understood gene, but that's not the one concerning me.

There is enough quality research on a couple of my mutations, but I am not going to report them... yet. Again, it's a very complicated issue - more so than I realized before getting my results.

I'm bursting at the seams with questions about my results, but I'm not ready to share them yet. :)

Thursday, October 29, 2015

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!