I am gradually meeting more and more people in person who tell me they suffer reactions from certain synthetic products. I know of someone who only reacts to candles, even unlit candles, and it's enough to give her a migraine and agitation. A stranger told me she can't smell perfume without getting queasy, and she told me this without knowing I have sensitives too. Another man chose me to complain to about cigarette smoke making him feel awful. Someone else even showed me their rash and told me it started after using a cheap heavily scented laundry detergent. I'm happy to be meeting these people, because what it is telling me is that people who don't have MCS are experiencing reactions to many common synthetic products on the market - and they're complaining about it! They're fully aware of which products hurt them.
We are in need of a major cultural change. More and more consumers are choosing non-toxic products for several reasons: their own health, the health of the workers who made the products, fair trade/ ethics, avoiding worsening global warming, or even out of distrust for questionable ingredients in products. Non-toxic products are boasting that they're safer, more sustainable, create less waste, do not pollute our air, and they're more sturdy (better value)... all for only a slightly higher price tag. I see the tide turning, and there are more and more brands producing non-toxic options. The majority of consumers, however, are not conscientious shoppers. Most people are still going to buy cheap plastic disposables made in a sweat shop with child labor, not because they don't care, but because it's normal and most affordable.
Here is where I struggle. As a sales person who is very passionate about and deeply believes in everyone switching to non-toxic products, I have no problem educating customers to convince them to spend the extra money on something safer and more sustainable. I get very irritated when customers are educated and STILL choose to buy the toxic option - what will it take to convince them that they're not just hurting themselves with that choice, but they're hurting the people around them? When I'm not at work, I can quickly and easily become the annoying idealist who comes across as being very judgmental about other people's choices. I struggle with this, because I see it as a moral dilemma. I feel morally obligated to warn people against using toxic products, because I know from personal experience and from reading the scientific studies that and from meeting MANY other people who have been hurt those products hurt people. I fear for the health of my fellow human beings - am I wrong to try and protect others? Well, I can't control other people's choices, and I don't want to. I believe in free choice. I don't blame the consumers. I blame the terrible health regulations in this country and many other countries around the world.
The problem is that companies are allowed to use untested unregulated synthetic (not found in nature) chemicals in their products and then sell them to people who trust that these companies aren't allowed to produce products that hurt people. How do you convince consumers that these products aren't actually safe? They have to want to be convinced - they have to be open to making a change in their own life. Most people don't have the time or energy to research and learn about consumer product safety, if they even know it's an issue. Many consumers who have heard warnings against certain products might fall prey to marketing schemes that make them think they're making a safer, healthier purchase (when in reality that product is not safe.) This is a major issue with BPA-free plastic water bottles. The "BPA-free" sticker makes it sound like it's safe, but the problem is that the BPA alternative in plastic hasn't been proven safe. In fact, there's been studies to show that the alternative is just as endocrine disruptive as the BPA! No, consumers are not to blame.
One comment I see very often on Facebook is, "Vote with your dollars!" This means that consumers demonstrate what kind of culture, environment, and standards we want in our country based on what we choose to buy. There's plenty of truth in this statement. This sentiment is why there are more and more companies choosing to produce organic food products. For instance, Hormel saw the success of Applegate (natural and organic packaged meat brand) and choose to buy them. Hormel is seeing that a very large portion of consumers prefer organic and natural products, so they wanted in on the market.
I don't believe that the "Vote with your dollars!" plan is enough. It's tackling the issue from only one side, and the other side of the issue is a bigger problem. The other side of the issue is the total lack of safety regulations and standards for consumer products. Until that changes, too many consumers will keep buying the cheap, toxic products (knowing or unknowingly) - and these people are voting with their dollars too. As it is, more people are voting with their dollars that toxic products are acceptable. We need to fight for better safety regulations, demand third party testing on synthetic chemicals, and demand that companies stop using overseas child labor. We do this by voting, writing our senators and congressmen, and funding more research projects.
The Trans Pacific Partnership (TPP) is a great example of something that needs to be voted on. It's being discussed and voted on in many countries, but have you noticed that the media here in the USA is refusing to talk about it? The idea is that is allows faster, more direct trade between countries in order to boost the economy and create better trade relations with these other countries. The problems? It means LESS product safety regulation and fewer products being made in the USA (meaning less jobs too). In a time when China has been caught bleaching garlic that goes for sale in the USA, making fake rice from plastic and mixing it with real rice that gets sold in the USA, processing meat with carbon dioxide so it looks fresh when it's already rotten, and more... why in the world would anyone trust China to ship us more products through the TPP that are SAFE? If anything, it will allow them to get away with even more safety risks since there would be LESS oversight! To my knowledge, Mike Huckabee was the only presidential candidate that actively protested the TPP. He is no longer in the race. Hillary Clinton, on the other hand, is a major supporter of the TPP. This is NOT a democrat/ republican issue - this is a moral human issue.
I believe in Capitalism. I believe in the right to make any business you want that's legal. I believe in the right of consumers to have free choice on what products and services they buy. I used to believe that less government involvement allowed for a better Capitalistic system. Then I started to learn that people cannot be trusted to make decisions that do not hurt people. I learned that businesses would choose to use toxic products just to make a dollar. I learned that businesses would move overseas, avoiding hiring USA citizens, just to improve income. I learned that businesses don't mind being ethically and morally ambiguous by using child labor in sweat camps and paying them next to nothing. If business leaders could be trusted to have the health, safety, and welfare of humanity at heart, I would still prefer a smaller government with less regulations. But I lost my trust. The only way I can see to hold businesses accountable is through government regulations. ...But what happens when our government can't be trusted to regulate? That's our current problem. The last amendment to the chemical safety law in this country actually made the law worse - we now have FEWER protections. The government is no different from the business. Our leaders are supporting immoral, unethical, poor trade agreements with businesses so they make maximum profits. Let me be clear: I am NOT against corporations. They're not evil, in fact, I think they're a fantastic way to build a business economy. I support many corporations with my dollars, because I like their mission, values, and how they conduct business. This is a matter of trust.
(This is not an endorsement of Bernie Sanders either - yes, he's the only candidate talking about these issues, which I really truly appreciate and respect, but I don't believe in his solutions. I fully understand if you vote for him based on his environmental values.)
If I had the energy, I would love to get into much more detail and give specifics. My energy is running low very quickly.
My dream is for the USA to be thriving on a safe, sustainable, non-toxic, democratic, capitalistic economy. I would love to see the elimination of child labor, sweat camps, meat factories, poor subsidized farming techniques that rely on GMOs and synthetic toxic chemicals, etc. I'm dreaming WAY too big, I know. My idealism is too grand. But as someone with "21st Century Syndrome" who is "allergic" to our modern lifestyle... I think I have very legit reasons to be this idealistic and to dream. I can't participate in this culture without getting sick.
I'd like to acknowledge a business who is actually concerned with product safety and sustainability: Lego! Yes, the plastic toy company! I'm a huge fan of Legos, and it broke my heart when I realized they're made from toxic non-biodegradable petroleum plastic. Apparently, it's bothering them too. They've vowed to switch to a new kind of non-toxic sustainable plastic! Thanks Lego! Continue to be a great example for other businesses and for consumers!
If you would like to do further research on the issue of the toxic consumer products, I encourage you to check out:
- Stink! Documentary
- The Human Experiment
- Toxic Hot Seat
- The Sensitives
- Tox-Sick by Suzanne Somers
- 12,000 Canaries Can't be Wrong by Dr. John Molot
Next time you go shopping, keep in mind that plastic is endocrine-disruptive (estrogen mimicking, insulin producing, and other hormone suppressing), is linked to obesity and diabetes, is not biodegradable, and has much safer alternatives. Consider buying the glass water bottle instead, and pass on the meat wrapped in plastic in favor of paper-wrapped meat from you butcher. Your water and meat will also taste so much better if you do this!
http://www.niehs.nih.gov/health/topics/agents/endocrine/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2702426/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279464/
http://www.nydailynews.com/life-style/health/chemicals-plastic-linked-health-problems-study-article-1.2285790
Sunday, February 28, 2016
Tuesday, February 16, 2016
Music For a Difficult Healing Experience
At the moment, I'm feeling really spacey, low, dreamy, over tired... my blood pressure is 97/55, and I'm feeling that it's hard to move. So I'm in a mood. Sometimes my favorite thing to do in this "mood" is listen to validating music while laying back and letting my mind wander to it. I thought I'd share some songs I find the most validating for me.
(Sorry about the formatting - again. Blogger really doesn't allow me to control these things.)
Muse - Explorers
One of my favorite songs, ever. It's a dark lullaby written for his newborn son, but it really resonates with me when thinking about all the rules I have to follow to keep my body healthy enough to function somewhat normally. I'm stuck in my house because the public makes me sick with their chemicals. I'm struggling to buy fresh organic foods where I live because we get whatever is left on the shipments to all the stores in our area. And so forth.
"Free me, I'll free you. Free us from this world! We don't belong here, it was a mistake imprisoning our souls. Can you free me? Free me from this world? Running around in circles feeling caged by endless rules. Can you free me? Free me from this world."
Matchbox Twenty - Unwell
Who doesn't resonate with this song every now and then? Rob Thomas isn't always a lyrical master (such as "Push", lol!), but when he gets actually gets a song right, he nails the message beautifully. This song always rings true, no matter how many years go by since it was released.
"I'm not crazy, I'm just a little unwell, I know right now you can't tell, but stay a while and maybe then you'll see a different side of me. I'm not crazy, I'm just a little impaired. I know right now you don't care, but soon enough you're gonna think of me, and how I used to be: Me."
Jars of Clay - Work
This song is hard to listen to because of the anxious pounding beat, but lyrically it's spot-on.
"Just in case, I will leave my things packed, so I can run away. I cannot trust these voices. I don't have a line of prospects that can give some kind of peace. There is nothing left to cling to that can bring me sweet release. I have no fear of drowning, It's the breathing that's taking all this work."
Emiliana Torrini - Tuna Fish
"Did you know that tuna fish float up to the surface? Belly to the moonlight just to cool down their heart down. 'Cause it helps them just to think about the hurtful things. I guess it's just one way to get them some sedation."
Emiliana Torrini - Birds
I think Emiliana and I are kindered spirits, because she writes gorgeous songs about being tired while observing people and animals and wondering how they work. I have to assume she's a low energy, people-watching, creation-admiring person like me to write so many songs of this nature.
"Lend me yours wings and teach me how to fly. Show me when it rains, the place you go to hide."
Muse - Map of the Problematique
This song often pops into my head when I'm feeling hopelessly angry about feeling sick with a reaction from someone's perfume or heavy scents in a store, or especially after opening a new book with the thick ink smell. I'm angry about getting poisoned so easily, and others refuse to change to be less toxic.
"Life will flash before my eyes, So scattered and lost, I want to touch the other side. And no one thinks they are to blame. Why can't we see that when we bleed we bleed the same?"
U2 - Acrobat
And this is what I think of when I need to feel some hope.
"When I first met you girl, you had fire in your soul. What happened t'your face of melting snow? Now it looks like this! And you can swallow or you can spit. You can throw it up, or choke on it. And you can dream, so dream out loud. You know that your time is coming round. So don't let the bastards grind you down."
The Beach Boys (Brian Wilson) - Hang on To Your Ego
This is the original version of the song that Brian Wilson wrote, and the alternative version "I know there's an answer" was released on Pet Sounds because the Beach Boys didn't like Brian's lyrics. I think Brian's original lyrics are brilliant.
This is the ultimate "validation" song.
"I know so many people who think they can do it alone. They isolate their heads and stay in their saftey zones. Now what can you tell them?And what can you say that won't make them defensive? Hang on to your ego! Hang on, but I know that you're gonna lose the fight."
(Sorry about the formatting - again. Blogger really doesn't allow me to control these things.)
Muse - Explorers
One of my favorite songs, ever. It's a dark lullaby written for his newborn son, but it really resonates with me when thinking about all the rules I have to follow to keep my body healthy enough to function somewhat normally. I'm stuck in my house because the public makes me sick with their chemicals. I'm struggling to buy fresh organic foods where I live because we get whatever is left on the shipments to all the stores in our area. And so forth.
"Free me, I'll free you. Free us from this world! We don't belong here, it was a mistake imprisoning our souls. Can you free me? Free me from this world? Running around in circles feeling caged by endless rules. Can you free me? Free me from this world."
Matchbox Twenty - Unwell
Who doesn't resonate with this song every now and then? Rob Thomas isn't always a lyrical master (such as "Push", lol!), but when he gets actually gets a song right, he nails the message beautifully. This song always rings true, no matter how many years go by since it was released.
"I'm not crazy, I'm just a little unwell, I know right now you can't tell, but stay a while and maybe then you'll see a different side of me. I'm not crazy, I'm just a little impaired. I know right now you don't care, but soon enough you're gonna think of me, and how I used to be: Me."
Jars of Clay - Work
This song is hard to listen to because of the anxious pounding beat, but lyrically it's spot-on.
"Just in case, I will leave my things packed, so I can run away. I cannot trust these voices. I don't have a line of prospects that can give some kind of peace. There is nothing left to cling to that can bring me sweet release. I have no fear of drowning, It's the breathing that's taking all this work."
Emiliana Torrini - Tuna Fish
"Did you know that tuna fish float up to the surface? Belly to the moonlight just to cool down their heart down. 'Cause it helps them just to think about the hurtful things. I guess it's just one way to get them some sedation."
Emiliana Torrini - Birds
I think Emiliana and I are kindered spirits, because she writes gorgeous songs about being tired while observing people and animals and wondering how they work. I have to assume she's a low energy, people-watching, creation-admiring person like me to write so many songs of this nature.
"Lend me yours wings and teach me how to fly. Show me when it rains, the place you go to hide."
Muse - Map of the Problematique
This song often pops into my head when I'm feeling hopelessly angry about feeling sick with a reaction from someone's perfume or heavy scents in a store, or especially after opening a new book with the thick ink smell. I'm angry about getting poisoned so easily, and others refuse to change to be less toxic.
"Life will flash before my eyes, So scattered and lost, I want to touch the other side. And no one thinks they are to blame. Why can't we see that when we bleed we bleed the same?"
U2 - Acrobat
And this is what I think of when I need to feel some hope.
"When I first met you girl, you had fire in your soul. What happened t'your face of melting snow? Now it looks like this! And you can swallow or you can spit. You can throw it up, or choke on it. And you can dream, so dream out loud. You know that your time is coming round. So don't let the bastards grind you down."
The Beach Boys (Brian Wilson) - Hang on To Your Ego
This is the original version of the song that Brian Wilson wrote, and the alternative version "I know there's an answer" was released on Pet Sounds because the Beach Boys didn't like Brian's lyrics. I think Brian's original lyrics are brilliant.
This is the ultimate "validation" song.
"I know so many people who think they can do it alone. They isolate their heads and stay in their saftey zones. Now what can you tell them?And what can you say that won't make them defensive? Hang on to your ego! Hang on, but I know that you're gonna lose the fight."
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!
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!
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