I wrote this short story in 2009 for musical inspiration for my husband. He was asked to write a short musical composition as part of his master's degree program in Piano Performance, and he needed something to inspire him. He did write a fun, very fitting piece to accompany this story, but he's unwilling to share it. :) I was reminded of it recently. It's a bit raw, unrefined, and underdeveloped, as my intention was just to write it for my husband. I didn't think very highly of the story so I put it out of my mind, just another work of mine that the world doesn't need to see. But after re-reading it yesterday, I like it way better now that all these years have passed and I've put my feelings aside! I thought I should share it here for you wonderful readers.
The best stories I've written and have won awards (even had published in the local newspaper) are always personification stories. I don't know why that is, but I have noticed using animals and objects as characters tends to free up my restrictions so I can say what I want to say in the story. :) Enjoy!
Hilo, The Prodigal Turtle by Sarah Langer
Once upon a time on a cozy sandy beach a turtle named Hilo was born.
Hilo was known by all the turtles in his beach villiage to have the
prettiest shell of all because it displayed every color of the rainbow
and glowed in the light like stained glass. His mother taught him to
walk by taking him for a stroll around their village every morning, but
she also did this to show off her son’s shell in the morning sunlight.
The other turtles liked to comment on it, saying how much more
captivating and beautiful it looked with each rising sun. He loved all
the other turtles and all the other turtles loved him. His father
taught him to step out of his shell and clean it with sponges that
washed up from the ocean so that it always looked at its best for his
morning walks. As he got older he kept up the tradition of taking a
morning walk to show off his freshly polished shell, even once his
mother got too old to walk around the whole beach village with him.
One morning when Hilo was cleaning his shell in preparation for his
morning stroll he felt a tremble in the sands and a roar from outside of
his village. He left his shell in the corner of his sand house and
poked his head outside to see why the earth was shaking. Turtles were
scurrying through the sand away from the ocean in a hurry the best they
could. Neighbors told him to run for his life. He looked towards the
horizon to see what they were fleeing from and saw the ocean flowing
quickly towards him. Hilo rushed to get into his shell, but the ocean
fell onto his sand house and carried him up and away in its current
before he could reach his shell. He pushed his green legs as hard as he
could through the water to keep his head above the surface. The wave
dropped him off with his turtle neighbors in a forest of tall grass and
then the wave drifted away. All the other turtles were huddled up next
to each other and howling cries of misery. Hilo shivered without the
comfort of his shell and joined the other turtles in their crying.
The next day Hilo’s mother found him and wrapped her neck around his to
embrace him. “I was worried I’d never see you again!” She exclaimed.
“I’m so happy you’re well!” Hilo showed his mother the saddest eyes she
had ever seen and he told her his shell got left behind. She told him
not to worry about his shell, but instead to help all the other turtles
to find their way back to the beach village and rebuild it. He was sad
to know his mother wasn’t concerned about his shell, but he took a walk
through the grassy jungle to find the turtles who were gathering to
rebuild the beach village. He felt ashamed to walk past all the other
turtles naked and began to cry.
“Don’t be sad, Hilo! We’ll rebuild our beach village soon and everything will be back to normal!” They said.
Hilo
argued, “It’s not the village I’m sad about, I just want my beautiful
shell back. Will you help me find it in the village ruins?” The other
turtles got angry at this and told him their village was more important
than his shell. They told him if he cared about his shell more than
their destroyed homes then he couldn’t help them rebuild. Hilo was hurt
that they didn’t care about his missing shell and continued to cry.
That night most of the turtles spread rumors about how Hilo wasn’t a
much of a turtle without his shell. He overheard them say that they
thought he was disgraceful to their community because he didn’t care
about the other turtles who lost their homes. At this Hilo grew angry.
He whined to his mother, “I don’t need their help anyway! I’ll find my
shell without their help and then they’ll see that I don’t need them!
Once I find my shell I’m going to find another turtle village that
actually cares about me and I’ll live with them.” In a rage, he stomped
through the grassy sand towards the boastful roar of the ocean. He
traveled the rest of the night until he found the giant fallen tree that
his sand house used to stand next to. He dug deep into the sand until
the sun rose, when he finally saw a glassy red from his shell sparkling
in the light. He pulled with all his might until the shell rose from
the sand. Hilo danced in joy at the sight of his shell, but he soon
stopped when he took a better look and found cracks and scratches all
over it. It looked nearly destroyed and he thought it might fall apart
if he tried to put it on, and so, again, he broke down in tears.
Later that day, his mother and father caught up with him, followed by
the rest of the turtles. “Hilo! Why are you still crying?” His mother
rushed to his side to comfort him. She saw his shell was broken and
tried to comfort him by saying, “Hilo, don’t despair. You can wear your
grandfather’s shell. We kept it in order to remember him.” Hilo just
shook his head and turned his shell in the sun light to see how much of
it would glow and found that it hardly had any glow at all.
The
other turtles saw his broken shell and one spoke up, “Now that your
shell has been found will you help us rebuild our beach village?”
Hilo shouted, “None of you care that my shell is broken and that I’m
naked! All you care about is your homes! How would you like it if your
shell got destroyed?” He pouted and then cried, “I’m going to find
another village of turtles who will actually cares about my problem!” At
this he turned and begun to travel up the beach. He walked for day
after day until he grew too tired to carry on. He dug a hole in the sand
next to a large rock and rested in it.
A seagull dropped from
the sky and raced up to Hilo’s shelter in the sand. “Mine!” it yelled
and stated and poked its beak into the hole to grab Hilo. Hilo covered
his eyes and screamed, but just at that moment a sea lion butted the
seagull away with its head. “Mine!” The gull squawked in a fit of rage,
but the sea lion just pushed the gull away again with its mighty tail
and it flew off over the ocean.
“Don’t eat me!” cried Hilo as he shook in sight of the giant sea lion.
The beast, who called himself Bubba, shook with laughter. “I’m not
going to eat you, little one. I’ve been following you for some time
trying to figure out why you’re traveling so far without a shell.”
“Don’t make fun of me.” Hilo slowly crawled out of his hole. “I had
the most beautiful shell of all the turtles in the world and the ocean
took it away from me when it washed over my village. The other turtles
didn’t care and now I’m trying to find a village that does care. The
other turtles only care about their own homes that the ocean destroyed.”
Again, Bubba shook with laughter. “You poor thing. Do you
really think another village will care about your shell? They’ll never
get to see it on you and they’ll probably just think you’re bragging.”
Hilo looked around nervously and tried to come up with an answer. “I guess I never thought of it that way.”
Bubba set his head down on the sand in front of Hilo. “Do you notice anything weird about me?”
Hilo studied the sea lion and shook his head. “No.”
The sea lion showed a big toothy grin. “You see, little friend, you
can’t even notice what’s wrong with me! Why should they notice what’s
wrong with you? Go back to your village, find a new shell, and make some
friends to have fun with. You don’t need anything special to brag about
to get turtles to like you.”
“What’s wrong with you?” Hilo kept studying its face.
“I have no whiskers. I was born that way. At first everyone made fun of
me for it, but then I realized that it is a funny thing. Now I make fun
of myself too and we all get along. I’ve never loved life more!” Bubba
tilted his head both ways so Hilo could see his bare face. “Now, let me
give you a ride back to your village so you can apologize to the other
turtles and help them all rebuild. They’ll love you for helping them.
Nothing can take away that kind of appreciation – not even the ocean.”
Hilo looked out at the ocean for a while and considered what the sea
lion said. “I like you, even if you don’t have whiskers.” Then he
climbed up on Bubba’s back. “I’m ready to go back now.”
Bubba
laughed some more and scooted towards the ocean waters. “Good choice!
Hang on tight little friend!” They swam back to the beach village and
Hilo thanked him and said farewell.
The turtles all raced towards
Hilo as he walked up towards them. “You’re alive!” they shouted with
joy. “We thought we’d lost you for good!”
“You were worried about me?” Hilo asked in confusion. “I thought you were mad at me.”
All the turtles shook their heads. “We realized we were wrong to be mad
at you. You lost your shell, which was really important to you. We’re
very sorry.”
Hilo smiled. “Don’t be sorry. I’m the one who’s sorry! You all lost your homes and I didn’t care. I want to help you rebuild.”
One of the elder turtles spoke up. “Please, wear your grandfather’s
shell. We’ll paint it for you. But first, let’s rebuild our homes!”
A
few beautiful sunny days later, all the turtles had new sand homes once
again. They all agreed that they were thankful for the ocean taking
away their old village because they all liked their new homes much
better. The elder turtle walked up to Hilo and thanked him for all his
help. The other turtles agreed and also thanked Hilo. Then his father
pushed his grandfather’s shell towards him. “Put this on, son.” Hilo
grinned and admired the shell. He recognized the pattern of his
grandfather’s shell, but admired the colorful painting job all the other
turtles did on it. It didn’t glow in the sunlight, but it was very
pretty and had a better pattern than his old shell. He walked into the
shell and all the turtles in the village cheered. Hilo joyfully walked
around the turtles so they could see.
Then Hilo made an
announcement. “I don’t want to be the only special turtle in this
village. Let’s paint all of our shells!” The turtles cheered and danced
at the idea. Over the next few weeks the turtles did nothing but paint
each other’s shells. Lots of birds and other ocean creatures circled
the village to watch the spectacular event and offered suggestions and
help.
Ever since Hilo got his shell painted, the village of turtles
had become famous across the entire beach. Other turtles and sea
creatures often visited to admire the shells and play. The beach had
never been a happier place.
The End
Friday, March 25, 2016
Sunday, March 20, 2016
Car Wash!
My truck probably hadn't had a wash in close to a year. I don't drive every day, and when I do drive it's usually short distances, but it was filthy regardless! How does someone with Chemical Sensitives safely wash a fifthly car? As it turns out, it's not about using extra store bought car wash.
I spent more time than I care to admit searching the internet for homemade car wash recipes. What I learned quickly is that there is quite the debate on what ingredients to use. Most people say to use dish soap, recommending Dawn (which I know some of you with MCS can safely use, but it doesn't work for me,) because dish soap lathers and scrubs very effectively. Everyone else says that dish soap is a terrible choice because it's designed to cut grease, and that same action can strip wax off your car. I checked my Biokleen Fragrance Free dish soap to if it had ingredients in harsher soaps that would strip wax, and found naturally derived sodium laurel sulfate, which is designed to scrub and strip whatever it's washing. So I opted against dish soap.
Instead, I decided to go with what the least amount of bloggers recommended: a mix of plant-based powdered laundry soap with white vinegar. White vinegar, because it's an acid, is fantastic at loosening dead bugs and glued on grime, as well as cleaning windows. I happened to have some Seventh Generation Fragrance Free laundry powder soap, so I went with that.
(Tangent: I know that many people refuse to support Seventh Generation because they do use pesticides, which get into their products. In my opinion, they're so much cleaner and less toxic than all other mainstream brands that can be found at Target and Walmart that I see more harm in boycotting them. I'd rather keep the brand popular enough to continue being sold at places like Target and Walmart. Wouldn't you rather people buy something with a minor amount of potentially toxic ingredients than Tide, All, Downy, Gain, and the other very popular and very toxic soaps? Tide gives me rashes, and the scent gives me pounding headaches and aches, which fatigues me so much I can hardly focus on anything else. Seventh Generation is "good enough" for me, but I typically do buy other brands.)
My recipe was this:
- White vinegar: fill a bucket about an 8th full
- Laundry Powder: A heaping scoop added to the bucket
- Water
...And most importantly:
- Pressure Washer
I don't own a pressure washer. My plan was to use my garden hose with a decent spray nozzle. I can't tell you if that would have worked well, because I didn't get to try it. If my car wasn't THIS dirty, I'm sure it would have worked well. My father-in-law, who is an incredibly self-sufficient and very well supplied man who never ever ceases to amaze me, does own a pressure washer, and invited us to come over and use it for the car wash. Since I'm sure the vast majority of my readers don't have access to a pressure washer, I'll pass on advice from other blogs: go to a self-serve car wash with a hose. Apparently most of them do allow you to use your own soap, so all you're paying for is the use of their pressure washing hose and water. For people with MCS, this could be a problem because you'd likely smell the soap from the other stalls.
The pressure washer got the majority of the dirt off of my truck before adding in the soap. It was the most necessary ingredient! We then added in the soap. It lathered really well, didn't smell (well, the vinegar smelled a little), and was doing its job. My husband then scrubbed down my truck while the soap was on it, then we rinsed, then we dried with camel leather (I'm not kidding when I say my father-in-law is well supplied.)
As it turns out, my truck is actually black! ;)
The soap worked. It didn't leave any new scratches, it got tons of dead bugs off my hood, my windows looked cleaner than ever, and my truck was shining in the sunlight again! It needs a wax job pretty badly, but it looked way cleaner than it's ever been after going through a drive through car wash!
The best part? The soap won't kill your grass or flowers. Or you. It's safe to let it wash off into gravel or your street drain. Have you ever read the warning labels on a bottle of store-bought car wash? They make it clear not to let the soapy water get into your lawn.
Before:
After:
I hope that this post encourages you to think twice about what products you use and WHY you use them. Do you really need to buy car wash, or can you safely and effectively use ingredients you already have? Sure, chemists will claim that car wash is a special formulation that is a highly effective cleaner without stripping wax or scratching your paint... whatever. I'm sure it's true, but that doesn't mean that natural, eco-friendly, people-friendly, non-toxic ingredients don't do the same thing. Not only that, but think about how that car wash affects the water supply, plant life, and animal life. Natural, safe ingredients won't cause the same degree of harm.
I'm considering making homemade car wax next. That gets more challenging, as the wax needs to be strong enough to stick to the car and truly coat it. I've seen many recipes, but how often do you have to wax? How effective is it? Will it come off on your hands every time you touch the car? We'll see if I take this on. :)
Note:
Many bloggers and posts on forums recommended pure castile soap, such as Dr. Bronner's Sal's Suds. I did have a couple bottles of his soap, but this would have been the more expensive option. I also wasn't comfortable running it through a pressure washer in case it would have clogged it up. I plan to try using this at home with my bucket and garden hose next time.
I spent more time than I care to admit searching the internet for homemade car wash recipes. What I learned quickly is that there is quite the debate on what ingredients to use. Most people say to use dish soap, recommending Dawn (which I know some of you with MCS can safely use, but it doesn't work for me,) because dish soap lathers and scrubs very effectively. Everyone else says that dish soap is a terrible choice because it's designed to cut grease, and that same action can strip wax off your car. I checked my Biokleen Fragrance Free dish soap to if it had ingredients in harsher soaps that would strip wax, and found naturally derived sodium laurel sulfate, which is designed to scrub and strip whatever it's washing. So I opted against dish soap.
Instead, I decided to go with what the least amount of bloggers recommended: a mix of plant-based powdered laundry soap with white vinegar. White vinegar, because it's an acid, is fantastic at loosening dead bugs and glued on grime, as well as cleaning windows. I happened to have some Seventh Generation Fragrance Free laundry powder soap, so I went with that.
(Tangent: I know that many people refuse to support Seventh Generation because they do use pesticides, which get into their products. In my opinion, they're so much cleaner and less toxic than all other mainstream brands that can be found at Target and Walmart that I see more harm in boycotting them. I'd rather keep the brand popular enough to continue being sold at places like Target and Walmart. Wouldn't you rather people buy something with a minor amount of potentially toxic ingredients than Tide, All, Downy, Gain, and the other very popular and very toxic soaps? Tide gives me rashes, and the scent gives me pounding headaches and aches, which fatigues me so much I can hardly focus on anything else. Seventh Generation is "good enough" for me, but I typically do buy other brands.)
My recipe was this:
- White vinegar: fill a bucket about an 8th full
- Laundry Powder: A heaping scoop added to the bucket
- Water
...And most importantly:
- Pressure Washer
I don't own a pressure washer. My plan was to use my garden hose with a decent spray nozzle. I can't tell you if that would have worked well, because I didn't get to try it. If my car wasn't THIS dirty, I'm sure it would have worked well. My father-in-law, who is an incredibly self-sufficient and very well supplied man who never ever ceases to amaze me, does own a pressure washer, and invited us to come over and use it for the car wash. Since I'm sure the vast majority of my readers don't have access to a pressure washer, I'll pass on advice from other blogs: go to a self-serve car wash with a hose. Apparently most of them do allow you to use your own soap, so all you're paying for is the use of their pressure washing hose and water. For people with MCS, this could be a problem because you'd likely smell the soap from the other stalls.
The pressure washer got the majority of the dirt off of my truck before adding in the soap. It was the most necessary ingredient! We then added in the soap. It lathered really well, didn't smell (well, the vinegar smelled a little), and was doing its job. My husband then scrubbed down my truck while the soap was on it, then we rinsed, then we dried with camel leather (I'm not kidding when I say my father-in-law is well supplied.)
As it turns out, my truck is actually black! ;)
The soap worked. It didn't leave any new scratches, it got tons of dead bugs off my hood, my windows looked cleaner than ever, and my truck was shining in the sunlight again! It needs a wax job pretty badly, but it looked way cleaner than it's ever been after going through a drive through car wash!
The best part? The soap won't kill your grass or flowers. Or you. It's safe to let it wash off into gravel or your street drain. Have you ever read the warning labels on a bottle of store-bought car wash? They make it clear not to let the soapy water get into your lawn.
Before:
After:
I hope that this post encourages you to think twice about what products you use and WHY you use them. Do you really need to buy car wash, or can you safely and effectively use ingredients you already have? Sure, chemists will claim that car wash is a special formulation that is a highly effective cleaner without stripping wax or scratching your paint... whatever. I'm sure it's true, but that doesn't mean that natural, eco-friendly, people-friendly, non-toxic ingredients don't do the same thing. Not only that, but think about how that car wash affects the water supply, plant life, and animal life. Natural, safe ingredients won't cause the same degree of harm.
I'm considering making homemade car wax next. That gets more challenging, as the wax needs to be strong enough to stick to the car and truly coat it. I've seen many recipes, but how often do you have to wax? How effective is it? Will it come off on your hands every time you touch the car? We'll see if I take this on. :)
Note:
Many bloggers and posts on forums recommended pure castile soap, such as Dr. Bronner's Sal's Suds. I did have a couple bottles of his soap, but this would have been the more expensive option. I also wasn't comfortable running it through a pressure washer in case it would have clogged it up. I plan to try using this at home with my bucket and garden hose next time.
Wednesday, March 9, 2016
Make Up - Why wear it?
I've been asked a few times why I take a chance on wearing make up when I'm fully aware of the toxicity of make up products. I've covered this before, but I'll give a slightly different answer in this post.
First and foremost, I'm extremely careful about the make up that I use. The brands that I like best (that I've tried) are Lauren Brooks Cosmetiques, specific products from Mineral Fusion (their liquids contain dimethicone, which I don't tolerate, but their powders are great), and MyChelle (which I'm not linking to because they discontinued their make up line - which is such a shame!) These brands are very careful about their ingredients, upholding strict standards. Their missions are to be truly non-toxic, mineral and flower based make up. They're also fragrance free!
Secondly, I'd like to give you some picture examples:
This is me without make up, after washing my face and moisturizing (with Badger's Unscented Face Oil):
This is me after applying Mineral Fusion's pressed powder foundation, eye liner, and mascara:
The make up makes me look a lot more alive and healthy, right? Okay, I'm super pale and I'm wearing my summer shade of foundation, lol! I'm out of my winter shade. I can't hide the eye bags with eye make up, but I can distract from them and reduce their appearance. That's worth a lot to me. When I'm at work or with friends or with family, I'd rather them not see just how tired I really am. I like to fool people into thinking I'm normal. I'll be very open and honest here on this blog, but in person, I want to look and act my best. It makes me feel better; it makes me feel like I have more energy than I do simply by looking the part.
I also don't wear make up every day. I pretty much only put it on on work days (3 days a week) or when my husband has a performance I'm able to attend.
I'd actually encourage those of you struggling with chronic fatigue to do this every once in a while. Put on some fun clothes, do your make up and hair, and enjoy the way you look. You have nothing to prove to anyone but yourself. Don't do it to make a statement. Do it for you - remind yourself how you can look and be. If you let the fatigue rule you, you'll start to give in to it and let it determine how you always feel. I know, I know. You don't feel like putting the effort into it. Believe me, I know! But when you're feeling slightly better than usual, go for it! You need to remember who you would be if you were not sick.
First and foremost, I'm extremely careful about the make up that I use. The brands that I like best (that I've tried) are Lauren Brooks Cosmetiques, specific products from Mineral Fusion (their liquids contain dimethicone, which I don't tolerate, but their powders are great), and MyChelle (which I'm not linking to because they discontinued their make up line - which is such a shame!) These brands are very careful about their ingredients, upholding strict standards. Their missions are to be truly non-toxic, mineral and flower based make up. They're also fragrance free!
Secondly, I'd like to give you some picture examples:
This is me without make up, after washing my face and moisturizing (with Badger's Unscented Face Oil):
This is me after applying Mineral Fusion's pressed powder foundation, eye liner, and mascara:
The make up makes me look a lot more alive and healthy, right? Okay, I'm super pale and I'm wearing my summer shade of foundation, lol! I'm out of my winter shade. I can't hide the eye bags with eye make up, but I can distract from them and reduce their appearance. That's worth a lot to me. When I'm at work or with friends or with family, I'd rather them not see just how tired I really am. I like to fool people into thinking I'm normal. I'll be very open and honest here on this blog, but in person, I want to look and act my best. It makes me feel better; it makes me feel like I have more energy than I do simply by looking the part.
I also don't wear make up every day. I pretty much only put it on on work days (3 days a week) or when my husband has a performance I'm able to attend.
I'd actually encourage those of you struggling with chronic fatigue to do this every once in a while. Put on some fun clothes, do your make up and hair, and enjoy the way you look. You have nothing to prove to anyone but yourself. Don't do it to make a statement. Do it for you - remind yourself how you can look and be. If you let the fatigue rule you, you'll start to give in to it and let it determine how you always feel. I know, I know. You don't feel like putting the effort into it. Believe me, I know! But when you're feeling slightly better than usual, go for it! You need to remember who you would be if you were not sick.
Sunday, February 28, 2016
Toxic Consumerism: Is Voting With Your Dollars Enough?
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
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
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!
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.
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.
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