Common Advice and Why It's Bad Advice for ME/CFS

Advice that doesn't make sense for people with ME/CFS, POTS, Fibromyalgia, and other energy-deficient diseases. Yikes. 

Before we begin, please understand that I'm saying this as a person with moderate and NOT severe ME/CFS. Severe ME/CFS is a different issue as they lose all independence. I'm about 70% housebound these days. I can run out and do short quick errands during my good hours. I can work a few hours a week. I can manage some chores most days. At my best, I get about 3 to 4 usable hours of energy each day. At my worst, I'm in bed most of the day (and I have 2-3 days like this most months.) 

And so... for the BAD ADVICE:

Food Prepping

A hallmark of ME/CFS is Post Exertional Malaise (PEM), which means that after a person spends too much energy then they crash and have to completely rest until they recover. PEM rest can take a day or two, or it might take weeks. Depends on the severity of ME/CFS. So the recommended method for avoiding PEM is something called "Pacing." Meaning, the person does a little bit of work at a time, but not enough to trigger PEM, and then rests. Then does a little more work later, but not enough to trigger PEM, then rests again. And so on. Basically, doing too much (spending too much energy) all at once means more time recovering in bed than if we pace ourselves and avoid doing too much at once. We tend to be able to do more if we're not regularly crashing ourselves. 

So... this idea of "Food Prepping" is confusing to me. It would take HOURS to do all the prep at once. I know people who spend their entire Sunday afteroons food prepping.  Hours of chopping veggies, cooking, portioning, washing dishes, cleaning up... noooo. That's way too much work all at once! This makes sense for couples with kids who both work long hours and can't find time or energy to cook once they're home in the evening. It doesn't make sense for chronic illness. Chronic illness is better when food is kept simple, and frankly, this isn't a simple way to approach food. Food prepping is strictly a time-management solution for busy people.  

Let's explore how I eat for an example of pacing:

Breakfast is usually just frozen organic sausages, and all I have to do is put them in a pan with water, put a lid on it, let them boil while I take all my pills, and then eat them. Easy. And how could I food prep that? I only eat protein for breakfast due to my reactive hypoglycemia issues, so there's no need for me to complicate breakfast with things that require a lot more energy to cook. 

Lunch for me is typically a simple salad. Salad isn't exactly the best thing for me because raw foods are really hard for me to digest, but it's easy and I need easy (and I have digestive enzymes I can take, ha.) I make it of romaine, avocado, cucumber, organic deli meat, and light sugar-free and seed-oil-free dressing. I might add in some artichoke hearts, olives, or beets from glass jars. Sometimes I add sprouted nuts and seeds too. When I say avocado, I usually mean pre-made guacamole that I scoop out. Honestly, it's really simple. The work comes from shredding up the deli meat in my hands and washing my hands. How could I food prep any of this? Everything I add to my salads is already prepared.

My afternoon snack is beef jerky or a protein shake. No food prep there.

Dinner. Dinner is where I need energy. I'm way better off cooking every dinner from scratch though. I thaw my meat the day before. When it's time to cook dinner, I go slowly. I start with chopping veggies if I need to, and then I store what I don't use in a container in the fridge at that point. For instance, I usually don't use a whole zucchini for one dinner, but I'll chop the whole thing (since I'm chopping anyway) and store the rest. My husband likes to chop his own veggies (he eats onions and peppers, and I can't.) I also buy pre-cut veggies when available, like shredded carrots or sliced shitake mushrooms. But my favorite? I buy frozen veggies and dump them in the pan. Frozen veggies are the best of the best for me. They're already cut, I can buy them in bulk, and they require no extra work.

I don't make big fancy dinners - I keep it simple. But my diet is also simple. I always eat meat with veggies, nothing else. Almost all my dinners are low-management. I pour walnut or coconut oil in a pan, add my chopped veggies, season them, and let them cook. Then when they're halfway cooked I add my meat. Sometimes I use a whole uncut chicken breast, sirloin steak, or salmon steak. All I have to do is season it and flip it. Other times I'll chop the meat to make stir-fry, then stir occasionally until cooked. I might add coconut aminos, coconut milk, lemon, etc.  You're never going to see me cooking anything that requires a lot of steps - but I also can't eat grains, beans, dairy and sauces, or other things that require extra work to cook. 

Oh, and how I love my Instant Pot!! It takes the work out of making roasts, stews, and soups. I always buy a quarter cow and store it in my deep freezer, so I get a lot of meat that needs to be slow cooked. The Instant Pot cooks it really well and saves me loads of effort over crock pots and the oven!

While food is cooking I wash the dishes I can wash (I do not have a dishwasher currently..... that's a major issue with my energy levels.) 

Note: I have a husband. When I'm really bad he will always take over cooking dinner. We avoid eating out, but we will Doordash if necessary too. I also keep cans of soup in the pantry for quick and easy dinners. I have multiple back-up-plans. 

Keep it simple, don't food prep. Spread your energy out into smaller chunks. Don't spend too much all at once. For many with ME/CFS, cooking anything at all would be way too much energy. In that case, you're going to need a caretaker or rely on food delivery. That makes this a moot point. 



Taking High Doses of Vitamins

It's probably not going to "cure" you unless you have severe deficiencies, in which case, you don't have ME/CFS. You have nutritional deficiencies. It's a really common cause of chronic fatigue, but it's not the cause of ME/CF Syndrome. Chronic Fatigue Syndrome and Chronic Fatigue are not the same, which is why CFS is going by ME these days. 

We need proper nutrition to feel our best, and getting proper nutrition will help reduce how bad we feel. If we're deficient in vitamins and minerals it can present as muscle pain, nerve pain, brain fog, insomnia, bad skin, losing hair, poor vision, ringing in the ears, and more. Yes, if you are deficient in anything, supplementing can help relieve symptoms. That said, ME/CFS is not an illness of nutrition deficiency. ME/CFS research is still determining how ME/CFS works, but we have evidence that it's an immune cell deficiency, or mitochondrial problems. There's also evidence that it's a brain fluid leak. 

The problem, however, with just taking some random mulivitamin or a B-Complex is that they might make you worse:

1. There's no regulation on supplements. There's no FDA monitoring them. So you can't know what you're really buying... unless you're buying from brands with 3rd party certifications, in which case you're going to pay a lot more. It's worth the cost of good quality vitamins if you need to take one. But so many of these cheap vitamins are not what they claim to be, and there have been lawsuits because of this issue. Walmart and Target store brands tested some pills and found they were just filled with fillers, not what the label said they were. 

2. So many multivitamins use forms of vitamins that are synthetic and not well absorbed. When you buy a multivitamin from Walmart or GNC, you're not getting the same vitamins you'd eat in food. You'd never find cyanocobalamin in food, but that's the most common form of vitamin b12 in supplements. What they do is bind cobalamin to cyanide (yes, the poison in apple seeds) and call it vitamin b12, because the cyanide has the ability to get the cobalamin into your blood stream really easily (cobalamin on its own would pass right through you without getting absorbed.) Then your body has to clear out the cyanide (poison), which takes a lot of energy - and we can't afford the energy to be detoxing like that. The amount of cyanide is considered to be well below the toxic limit, so it's considered safe. That said, people who need to take very high doses of B12 (very common in those with fatigue illnesses) often don't have bodies that can handle any extra substance to detox. I have talked with people in groups who claim that these synthetic vitamins tend to give them a lot of gut pain, trigger IBS issues, and cause flare ups. When they take the more expensive natural forms they don't have these problems. If you want to read even more about this issue, I recommend reading Dr. Ben Lynch. He is a leading researcher on genetics, and how things like forms of vitamins affect our DNA. 

3. So many vitamins contain super high doses of vitamins you can actually overdose on. Look at the supplement facts on any vitamin. The first on the list is vitamin A, a fat-soluble vitamin (meaning your body stores all of it in your fat instead of passing excess through you in your urine.) Fat-soluble vitamins are vitamins you can overdose on, and you can actually get sick from vitamin toxicity. Vitamin A is always in a really high percentage (like 1000%+ RDA) because these companies want you to feel like you're getting your money's worth. Except you really don't need that much vitamin A. You really really don't. 

4. Vitamin toxicity can cause a lot of problems. I am prone to vitamin b6 toxicity, which causes my neuropathy. The moment I start feeling the tingling in my feet return, I know I've had too much b6 in my food. When that happens I have to avoid sunflower seeds and poultry for a while, because they're the foods I eat with the highest amount of b6. I wrote a blog post on this.... let me go look for it to create a link..  Wait no... I didn't. HOW DID I NOT WRITE ABOUT THAT. That was a MAJOR issue I went through! Scrolling through my blogs, I see that I did touch on it in a few different posts, and it started here. I need to write about b6 toxicity!!! It's so important!! 

Yoga - Or Exercise in General

Let's go back to what ME/CFS is: It's defined as chronic fatigue that is made worse by exercising, causing Post Exertional Malaise (PEM.) Exercise makes ME/CFS worse. 

Once upon a time in the UK, the medical recommendations for treating ME/CFS was Graded Exercise Therapy. Julie Reymyer wrote an excellent article for Slate Magazine on this issue, explaining why it damaged patients and how this terrible treatment came to be the recommended treatment. 

Deconditioning is a real issue though, so it is good to move as much as we can with the energy we do have, as long as we don't do so much that it triggers PEM. I am able to go for a few walks each week, usually about a mile. They have triggered PEM for me sometimes, but when they don't, it's worth walking. It feels good if I don't push myself too much. 

But I also want to explain why Yoga is a bad recommendation for people with POTS. Yoga involves a lot of inversion, and POTS is triggered by postural changes like inversion. A yoga instructor that understands POTS can be helpful, because there are some yoga practices that don't involve postural changes, but it will be hard to find such an instructor. People with POTS do need to strengthen their legs to help with the blood pooling, but they need exercises without postural changes. I really like exercises in which I'm laying on my back or stomach. 

Essential Oils

Oy vey... essential oils. What a huge topic! As someone with MCS (Multiple Chemical Sensitives), I don't really like to recommend EOs because they all contain VOCs, which can trigger reactions. A lot of brands use formaldehyde doners in their oils too. I personally don't have problems with some EOs, and I'll use them occasionally because they do help. I don't use them for perfume or aromatherapy, I use them for things like massaging blood into feet or treating my skin when I get hives or rashes. But for the purpose of this blog, I'm not going to focus on MCS issues. I want to focus on bad advice for treating fatigue. 

ME/CFS comes with a lot of sensory issues, and the purpose of EOs are to stimulate your senses. They work because they affect your nervous system. That can be too much for people with ME/CFS to tolerate. It's possible that one or two could help someone with ME/CFS, like using lavender when they have insomnia. I find that ginger oil in my baths helps keep me warm for a few hours after the bath (I'm always freezing cold.) The problem is not EOs... the problem is people who recommend using them. They're not careful! If someone with ME/CFS wants to use EOs, they need to use very light amounts at a time to see if they can handle them. It's really easy to overwhelm the nervous system with EOs, which can create even more fatigue, even cause headaches and muscle aches. 

EOs (if they're pure, organic or wildcrafted, and without synthetic perfuming agents or stabilizers added) may help manage some symptoms if you can handle them. If not, they'll make you worse.

What they will not and cannot do is cure ME/CFS, Dysautonomia, Endometriosis, or any other illness. It's bad advice to recommend them for someone with ME/CFS because it's most likely just going to overwhelm their nervous system. It could be like someone blasting rock music while you're trying to sleep - they're too stimulating. Sensory overload. People with ME/CFS really need to maintain a calm nervous system. The least sensory issues possible helps. Avoid smells, loud noises, light pollution, bad textures, etc. 



Go to Therapy

For grief counseling? Yes, that's a good idea! The ability to talk about how much grief this illness causes is really helpful!

In my experience, however, this advice usually means "go to a psychiatrist for drugs to treat your anxiety" OR "go do CBT to fix how you think." It's not only a highly dismissive remark, it's dangerous. CBT is a therapy that assumes your root causes are all in your head - that you believe you have an illness instead of actually having one. It's very insulting. Read the article in that link and it will explain why CBT has harmed many patients. In short, CBT encourages patients to stop acting like they have an illness, which leads to the patients making themselves MUCH worse because they try to exert energy and live "normally." 



Just Get a Job Because Having a Reason To Leave the House Helps

When I first got sick, a lot of people told me this. I wasn't working for 1.5 years, and I was bedridden for much of that time. I didn't get a job until after working with a doctor for a while and recovering enough to be able to work very part-time. Without seeing that particular doctor, I wouldn't have been able to manage working at all. I saw loads of doctors who couldn't help me, then I flew out of state for my naturopathic doctor, and he was able to help me. He's internationally recognized at helping people like me though, where as all the local doctors I saw didn't have a clue what was wrong with me.

After I started working again, did the job help me recover? No. It didn't do anything for my physical health. Did it help give me a sense of purpose and lift my depression? Yes, but it's because of the nature of the job I had. I was very passionate about the work. Despite my passion for it, I was seriously not able to work more than 10 to 15 hours at best. I couldn't work multiple days in a row, and I spent my time at home recovering. 

We must remember that ME/CFS is an illness of energy. Jobs take A LOT of energy, and if we can't spend energy at our jobs, we're probably going to get fired. If we give more energy than we have to a job to avoid getting fired, we're probably going to have a lot of PEM that keeps us feeling at our worst. 

Highasakite - Science and Blood Tests

Florence and the Machine - Sky Full of Song

The lyrics are wrong in this video - it's "I can hide from the thunder in a sky full of song."

December 2017 Doctor Vists and Tests Part 1

I have a lot to explain, and for the first time in months I might have what it takes to sit down and type it out. I finally took my supplements this morning, and they're helping! :)

For a little over a year there has been this lingering question mark over my head asking if I have Postural Orthostatic Tachycardia Syndrome, or POTS for short, a form of Dysautonomia. I had a couple medical practitioners say that they suspected POTS. POTS is defined as your pulse going up at least 30 bpm when you stand up then sustaining a high pulse for a little while (but the length of sustaining is what confuses me.)

I got myself a pulse oxygen meter that clips onto my finger in order to see what happens to my pulse when I stand up. About half of the time my pulse does shoot up at least 30 bpm, often way more than that. Sometimes it stays that high for a minute or two, but normally what happens is my pulse shoots up, then goes down, then goes up again, then goes down again, then goes up again... it's a roller coaster. I took some videos of this happening and sent them to a Neurologist in New Hampshire who is an expert in Dysautonomia that my primary doctor referred me to. He took me on as a patient, which was a huge relief to me since he's very difficult to get into.

Why not see someone locally in North Dakota? Because POTS isn't well understood, and it takes a doctor with training in dysautonomia to be able to diagnose it. There isn't anyone in ND except for one pediatric doctor that diagnoses, and I'm not a child. There doesn't even appear to be a Tilt Table in ND. If I went through the local hospital for a referral they would have sent me to Mayo in Rochester, MN. It's an 8 hour drive from here, and very expensive. Too expensive compared to flying somewhere to see a highly rated dysautonomia specialist.

On the trip to NH I also scheduled a Tilt Table Test, a Echocardiogram, Lyme Disease testing, a visit with the Neurologist, and a visit with my primary doctor (my Naturopathic doctor.) It was a very full trip. In preparation for the visits I had to be off all my supplements for a few weeks prior. I posted a bit about that experience, but in short, I didn't do quite as badly as I expected without the supplements, but I did get worse. High adrenaline and crashing during the day, high adrenaline and interrupted poor sleep at night. My digestion became poor and my joints and muscles ached. I ended up gaining between 10-15 lbs (lots of fluctuation day-to-day.) My mood deteriorated rapidly, and my periods became irregular. My stress level was through the roof and I couldn't control it, even while relaxing.

On the first day of the trip I went to Elliot Cardiology in Manchester, NH. I started with the Tilt Table Test. I had to fast at least 4 hours before the test to make sure I didn't vomit during the test and end up choking on it. As someone who has to eat every 2 hours to stay strong enough to function, that was hard, and then the test took about an hour. After the test my blood sugar was 72, which was barely above hypoglycemic, so I was actually impressed with my body that it didn't get hypoglycemic after all that, but I was very shaky.

The test was... not really what I was expecting. I was strapped down to the bed. It took 3 nurses to find a vein in my arm to put an IV into - the IV was to raise my blood volume back up with saline in case my blood pressure dropped too low. They almost gave up on using my arms for the IV, but the last nurse they called in wasn't afraid to dig a little deeper and she managed to get the needle into my vein. They hooked me up to an EKG machine, and took my blood pressure. I was expecting that they would let me lay calmly for a while to get my body down to baseline, but next thing I knew, I was being tilted upright on the bed. I definitely was feeling nervous and high strung, definitely not at my baseline before they tilted me. I started to get upset because I didn't feel like they were doing the test right, but the tilting made me feel so weak that all I could do was focus on surviving the tilt. In that moment I understood why POTS patients say the TTT can be really painful and difficult to endure. During the tilt I felt this deep pressure moving downward in my body, my vision narrowed towards black, and I started crying. Tons of tears just poured out and they had to give me tissues. It was horrible - but a feeling I was familiar with. I've felt like that before when standing up too quickly, but this was the most extreme. I'm not a fainter, my body always fights the feelings like I'm about to faint. If I was a fainter, that's when I would have fainted and I would have passed that test criteria. I couldn't communicate well, Thoughts were not working well, so when the nurses asked how I was doing, I just got out the words "weak, I can't stop crying." But then I was standing there strapped to this bed at an 80º tilt. Within about 5 minutes I felt better. My body was recovering. I didn't understand what to do - I felt well supported by this bed, so my body wasn't working to stay upright. I had no idea if I was supposed to relax all my muscles and stop supporting myself or if I was to stay there, legs locked upright. I had waves of hot flashes, waves of weakness, but never fainted. One nurse told me, "You're not quite normal," and I never had a chance to ask her what the meant. After the test she had to run before I could question her.

After 30 minutes they laid me back down flat. This is the part that's as bad as the tilt itself. I was able to stand up, but was very weak and shaky. I was trembling. I talked to the nurses for about 30 seconds, then I tried to take a step. I couldn't. My leg muscles gave out and I had to fall back down on the bed. I was crying hard again, shaking almost violently, freezing cold, and felt so weak. The nurses argued a bit about if it was an anxiety attack, hypoglycemia, or adrenal issues. The one nurse was sure it was adrenal, but they're not allowed to diagnose. That's when they took my blood sugar and found I was borderline hypoglycemic. On this note, I was disappointed that they did not do the version of the TTT in which they infused adrenaline through an IV if I didn't faint, and then do blood labs to see how my adrenals react to the IV. This part of the test often makes people faint, and then they know the syncope is from adrenal issues. I know I have adrenal issues, so I wanted that part of the test done and didn't get it.

I couldn't walk on my own, so they put me in a wheelchair and delivered me to the echocardiogram room. I needed the echo to check on the status of my Pulmonary Stenosis, which I've had since birth and it never went away. It's still there. That's about all I learned from the test. I'm thinking of sending all my past echos to a cardiologist there and having them do some comparisons.

That was the end of the first day of testing. I was weak and low energy the rest of the day.

The next day I saw my Neurologist at Dartmouth-Hitchcock Medical Center. But let me back up a bit: I almost didn't a couple of times. I got a phone call from his office the day before our flight out there saying that he wanted to cancel my appointment because the Autonomic Nervous System testing equipment broke and he couldn't test me. I had to beg to keep the appointment, even just a consult, and they agreed because I was traveling. The day of, I had two major strikes against me going: I started my period that day (I have to roll my eyes at my body choosing the worst times), and the weather was horrific. 3 inches of snow in a few hours time, icy roads, and near whiteout conditions. An hour and 20 min drive took us 2 hours, and I ended up getting there 10 minutes late. 5 more minutes and he wouldn't have seen me. Or so the receptionist said, but the doctor was forgiving and spent a good amount of time with me. I didn't have time to go to the bathroom before seeing him, so I was cramping badly and was uncomfortable. My blood pressure was 120 something over 63 and my pulse was over 100, if I remember correctly, which showed just how stressed out I was about my bathroom needs, getting to see this doctor finally, and being so rushed in bad weather to get there.

He sat me down and let me talk - he had me tell him my history and all my symptoms. He gave me a good amount of time and really listened, which blew my mind. He was amazing. He took me seriously, didn't try brushing off anything I said. He even knew about the damage vitamin b6 toxicity can do and understood what I went through with my nerve pain. He had me to do some nerve conduction testing, which turned out normal. He also showed me the results of the TTT:


I went up over 30 bpm, the criteria for POTS. But it doesn't say if it was sustained. It could also be POTS symptoms caused by something else. So he needs more information.We decided that since he wasn't able to do the autonomic nervous system testing that he would have me wear a heart monitor for 14 days - a Zio XT Patch...


...Which meant not being able to go back on my supplements. My doctor and I agreed that we need to measure my heart without the medical aids to show how I am without support. Today marked 14 days, so I ripped the monitor off and took a hot shower and my supplements. The patch was itchy the whole time and it left me this pretty rash:


I'll tell the rest of the story in Part 2, as I have to go to work now. :)

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!