You may already be aware that you have MTHFR or perhaps you’ve never heard of it. Considering that in some ethnicities, roughly half the population has a form of MTHFR, I think it’s important that we all pay even more attention to the ingredient labels on our food! [It’s estimated in America that among Caucasians, 10-15% have MTHFR and among Latinos, 25% have MTHFR. These percentages increase depending on ethnicity and location.] As it is a gene mutation, it is handed down. Two of the three of my kids that we have tested have MTHFR mutations. I have one type and my husband has the other, so it’s just a matter of learning which versions the kids received and how we can support them.
Back to the purpose of this blog post: I was feeling pretty good about the organic, unsweetened almond milk I had been purchasing from Kroger for almost two years now. It was organic, which is challenging to find in almond milk, and it didn’t contain any sugar (also hard to find). That met my urgent criteria at the time during my treatment of SIBO . At the time, MTHFR was just a blip on my radar, something I had diagnosed, researched, subscribed to a treatment plan that worked for me, and then somewhat forgot about.
The almond milk in question…
One afternoon, while trying to distract my daughter from her panic attack, showing her tools that I personally use to occupy my brain, I grabbed an empty almond milk container from the recyclable pile and started reading the ingredients outloud to her, showing her where they were and what they meant. I feel fairly confident in the ingredients that we consume, so I stuttered a little as I read to her: “cyanocobalamin, which is vitamin B12”. True, it’s the last ingredient on the list. The nutrition label says it contains 0.6mcg, which isn’t a lot in the grand scheme of things. And I don’t drink much, just a dash in my decaf coffee every day. But, the reality is, I shouldn’t be consuming it. Neither should my children or my husband who all have a variant of MTHFR.
Why shouldn’t we be consuming it? It’s a vitamin, isn’t it? Aren’t vitamins supposed to be good for us? Well, yes, vitamins are good for us, when they are naturally found in food sources. Unfortunately, the vitamins added to our food (“fortified” as the labels brag), are often synthetic (fake) versions of the real thing. Fake might work for some people (the small portion of the population that doesn’t have MTHFR, for instance), but it doesn’t work for those with MTHFR.
I’ve written about MTHFR before, so I won’t go too far into it, but it is a gene mutation. We all have genes and some of them are mutated. To put it simply, MTHFR causes methylation issues, or interrupts the natural breakdown of non-methylated vitamins. Specifically, MTHFR is the inability of the body to convert folic acid into folate. Folate is natural. Folic acid is synthetic. Folic acid is what you’ll see on many vitamin bottles and even fortified food labels, but it’s not in its natural form and if you have MTHFR, your body will not absorb it. Not only that, but because of the consumption of non-methylated vitamins via foods and supplements, the receptor sites for the vitamins get blocked and there are free-floating synthetic vitamin B’s floating around the body wreaking havoc. (I am oversimplifying here in order to paint a picture.)
Consuming non-methylated forms of B vitamins can cause a myriad of symptoms or none at all (in the short term). Be advised that with no ability to breakdown or convert the synthetic vitamin to a usable source, the body will eventually become overburdened by the presence of unusable synthetic vitamins resulting in symptoms eventually. Symptoms vary per person, so I can’t say what you, in particular, will feel. I can tell you that I had a craving for Chex mix a couple of years back, so I bought a few boxes of gluten-free Chex cereal and gluten-free pretzels and peanuts. I made a healthier version of Chex mix and ate some every day, thoroughly enjoying it. I didn’t draw a connection to the heart palpitations I’d started to experience or the increase in anxiety, but I was upset by it and started looking for the source. Very clearly, on the boxes of cereals I’d used, I saw the synthetic vitamins, (so many of them!) and it dawned on me: I was flooding my body with synthetic vitamins that I couldn’t breakdown. A few months later, when I was consuming Luna Bars because they were on sale and delicious, it only took one day of high-vibration anxiety and jitters for me to check the ingredients and realize, yet again, I’d been consuming synthetic B vitamins.
So that’s my experience and not one I want to have again. I have a list in my head of foods that are safe and that is what I purchase. I’m so careful about it, which is why I was shocked that I’d had this synthetic B12 in my almond milk for who knows how long. All I can think is that I was so focused on removing all sugar from my diet while treating my SIBO, that I wasn’t thinking about MTHFR anymore.
I did write to Kroger, because they need to be educated on MTHFR and the danger of using synthetic vitamin fortification of their foods. Of course I received a standard reply thanking me for bringing it to their attention and how much they value their customers’ input. They also said: “Your comments have been shared with our store’s management team for review. We have also shared your concerns to our Quality Assurance Department for review.” I’m not holding my breath.
In addition to anxiety, some MTHFR symptoms include depression, nerve pain, digestive issues, bipolar disorder, schizophrenia, chronic fatigue, migraines, chronic pain, vaccine injuries, miscarriages, tongue ties & lip ties, and the list goes on. If removing synthetic vitamins and foods that contain them, while supplementing with methylated B vitamins can keep those symptoms at bay or reverse them, isn’t it worth considering?
Take away: All vitamins are not created equal.
Here’s what I take and highly recommend: Seeking Health B12 5000 Lozenges. I take a half on an empty stomach first thing every morning. I started with a quarter, and couldn’t handle 3/4. Every body is different. Check out my protocol here.
I read and follow Dr. Ben Lynch of Seeking Health who has done extensive research on MTHFR as well as other gene mutations and he doesn’t recommend constant methylfolate intake, so I’ve taken a break from folate for awhile with no side effects. But when I did take it, this is the brand I used.
Read more about your genes in Dr. Lynch’s book DIRTY GENES!
Want to know if you have MTHFR? I think it’s valuable information but I don’t recommend going to your doctor for it. This one test cost me almost $400 (insurance didn’t cover it). Also, many medical institutions only test for MTHFR C677, not 1298 (which is more likely to cause the horrible symptoms listed above). A 23andme test is $200 and will tell you ALL the gene mutations you have. I can even help you access that information from the test results once you’ve received them.
As they said in the afterschool specials: The more you know! (Please tell me you just said that in your head and saw the star swooshing across the screen!)
This is the milk I’m using now, Califia. It has no sugar, no synthetic vitamins, no carageenan. You can buy it here!
This is the milk I’m using now – no fortified synthetic vitamins, no sugar, no carageenan….
How does a holistic nutrition coach handle being diagnosed with H. Pylori? Well, I’ll tell you…. if you feel like joining me on this journey.
If you don’t know by now, I firmly believe that gut health has EVERYTHING to do with psychological health since MOST of our neurotransmitters are in our GUT. They call the stomach “the first brain”. So in order to heal the “brain” (wherever you believe it is) you must start with the gut.
I can’t believe I didn’t have stool tests done at all over the last 4 years. I’ve been on this scary journey that started with antibiotics and panicattacks, eventually leading to candida diets and MTHFR protocols. (Please click on the links to these blog posts to see where I’ve already been….) I’ve learned so much! I’ve tried to share pieces of that with all of you. I don’t want my experiences to be in vain. Please, please learn from me!
Here is my journey:
So, here I am, early 2018, embarking on digestive issues that resemble the trash can diagnosis of IBS (irritable bowel syndrome). Since I don’t really believe in IBS, I had to wonder what was happening. Alongside these lovely experiences, my anxiety was increasing in severity and frequency again. I kept looking for reasons, trying probiotics, drinking clay, changing my diet to a more Paleo, low-carb diet, increasing exercise, decreasing wine, and on and on and on. (I am nothing if not persistent and dedicated to my health!)
After a long month of ridiculous amounts of stress, I arrived alone, at my kitchen counter, in a puddle of tears. I shared my concerns and fears with a few close friends and my husband. I was positive I had internal bleeding. My stools were not what they should be (black, tarry, sticky, very frequent) and Dr. Google let me know it could be colon cancer. Everyone encouraged me to get checked out, though with digestive and panic issues, how exactly was I going to get through an appointment? It didn’t really matter how because my husband made sure I had an appointment first thing the next morning.
I survived that appointment. I still don’t really know how, but the mind is a powerful thing. I drove home with bags of containers and a bucket. Do you need those gory details? Let’s just say I was desperate to have a bowel movement large enough to fill all the containers. And with some really good coffee and conversation, I was able to meet my requirements on a Thursday which meant my stool samples could get in the FedEx box for the distance lab and to the local lab before the weekend. I was so thrilled to have that behind me. (haha, behind me…..)
During the appointment, we talked about SIBO Small Intestinal Bowel Overgrowth and how that is responsible for most IBS diagnoses. (If you have been diagnosed with IBS or suspect you have it, please get tested!) Treatment is directly related to the bacteria that is overgrown and once treated, health resumes. That was an exciting possibility for me!
As early as Friday afternoon I got my first negative test result. Ok, ok, I can handle that – I don’t want EVERYTHING, just SOMETHING. With a diagnosis, I can find a treatment. With a treatment, I can find a cure. With a cure, I can work on re-wiring my brain to not choose anxiety first! So, I went through a whole weekend wondering when the results would pour in. I had burning stomach sensations, anxiety, discomfort, nausea…. Whenever I would feel good, I would think it was over, maybe it was just a bug. But it would inevitably return.
On Monday morning, taking my big girls to school, my husband called and I said, “You’re on speaker in the car with the kids!” And he said, “Oh, you haven’t dropped them off yet? Call me back when you do.”
Ohhhhh-kayyyy, my oldest daughter was super nervous about why he had called. I assured her everything was fine, but I wondered too, why he had called and why he couldn’t say what he needed to say over the phone in front of the kids. Dr. Google’s diagnosis taunted me from somewhere in the recesses of my brain, but I pushed it aside, dropped off my girls and called him back on my way home.
He handed me off to my Nurse Practitioner, who I adore, but who I didn’t know I’d be speaking with right then! I tried to pay as close attention as possible while my toddler babbled about stop signs in the backseat. She told me one of my tests came back as positive for H. Pylori.
Oh.
I know that one. That’s the type of bacteria they take the time to teach you about in grad school because it’s so aggressive, it’s so challenging to treat and it requires antibiotics. ANTIBIOTICS. I’ve been avoiding them since 2014. How was I going to do this? And before you mention that you can treat H. Pylori without them, I know. I’ve read Dr. Axe’s website, too. But when you’re suffering the way I’ve suffered, potentially off and on for years? You want a cure. Not a bunch of possibilities. So, I committed myself to doing everything she told me to do.
Ever so thorough, she checked my allergies, my previous prescriptions, my reactions, my sensitivities, and my concerns. And then she unfolded the protocol, which I began that morning. I had to make a chart to figure out how to squeeze it all into one day.
Can you see my dilemma here? Empty stomach. Before eating. With food. No dairy. No alcohol. It’s all over the place! The first thing I did was get permission to take the Tetracycline with food. (I don’t do ANYTHING on an empty stomach except my MTHFR vitamin B protocol in the morning.) So that meant for 3 of these medications I could do them at breakfast, lunch, afternoon, and dinner. The twice daily one, I decided on breakfast and dinner. I’d worked out a plan and wrote up a chart. I could squeeze my daily kefir in mid-morning so the calcium wouldn’t interact with the Tetracycline. I also took my NP’s advice and ordered the probiotic she recommended: MegaFlora – see below for affiliate link.
I didn’t have to think about taking the probiotic yet because I ordered it on Amazon. Thank God. Probiotics had not gone well for me over the last few months. But I assured my NP that I would try again. I would do anything to make this better!
So if you review the protocol, you’ll see that’s 14 pills a day. That’s a LOT of pills! Especially for someone who doesn’t take pills ever…. Plus I take 2 vitamin B’s in the morning. 2 fish oils, a phosphetidylcholine and vitamin D3 drops with lunch… so now we’re up to 19 pills and D drops! I thought maybe I’d take a break from the vitamins, except the B’s while I did this 14 day protocol.
Day 1: Monday was overwhelming. I made my chart. I took my pills. As much as I tried not to think about it, it was all I could think about. I felt so gross. I was scared of side effects or reactions. I didn’t know what to expect. I thought I was going to throw up at any given time of day, but I begged myself not to because then I’d have to start over! I was messaging my husband so many questions, including could I take clay or charcoal or aloe if I needed to? The answer was no to the clay and charcoal, but yes to the aloe, so there was that. I felt like there wasn’t much I could do if I started feeling bad. My go-to’s were gone.
Day 2: On Tuesday, I felt gross. Still. Again. Nausea made eating a challenge but eating was required to continue the protocol. Late morning, I noticed I was scratching my head and neck. A lot. I texted my husband who immediately called me. Hives? No. Rash? No. Red? Only from scratching. But what if? I could feel panic rising up in me. I’d had an allergic reaction to antibiotics in the past and it was so scary and here I was sitting by the fire, working, while my 2 year old ran around. What would I do if I had a reaction now? The day dragged on with all this fear. He consulted with my NP and they added milk thistle twice daily, lemon water, and cooked garlic to my regimen to aid with detoxification. Plus, she wanted me to make sure I was still taking my fish oils. Ugh.
If you’re keeping track, that comes to 14 prescription meds, 2 fish oils, 2 vitamin B’s, 2 milk thistle caps, and guess what? The probiotic arrived that afternoon. I decided to take that before bed so it wouldn’t interfere with anything else. That’s 21…. TWENTY-ONE pills a day. For 14…. FOURTEEN days.
Don’t get me wrong. It could be worse. It could be Dr. Google’s diagnosis. It could be untreatable. It could be undiagnosed issues. Here I am with a diagnosis, a treatment plan, and hopefully a cure at the end of 2 weeks. I don’t mean to complain. I am aware that things could be so much worse. Still, when you’re in it, you’re in it.
I spent the day edgy about the itching, praying against any allergic reactions, trying not to worry, and playing the Bachelor in the background for distraction (Did anyone else think that was a horrible season?). I was nauseous and exhausted. Dizziness and fatigue would hit me after every round I took, but I wasn’t giving up unless I had an allergic reaction, because starting over sounded too scary.
Can I share a silver lining here? Rest. Resting on the couch because I was too nauseous to do anything else at times, I had so much time with my family. My toddler would snuggle and play next to me (when he wasn’t destroying the house and pulling board games and DVD’s off the shelf). My girls sat with me, snuggled and chatted with me in the evening. After bed time routines were completed, my husband and I just snuggled and talked on the couch. That quality time felt precious. It felt important. I welcomed that gift in the middle of the cursed diagnosis-treatment cycle.
That night I encountered insomnia, a terrible taste in my mouth (probiotic? side effect of meds?), and nausea. I started crying when the alarm went off.
“I’ll talk to her,” my husband said.
“No! Don’t!” I said. “I don’t want her to think I’m a crybaby. If it’s not urgent, don’t tell her. I’m just tired. So tired.”
And so began Wednesday. Day 3.
Surprisingly, for me, the day got better! I was tired from the night before, but I didn’t feel super itchy or super anxious. I was in the bathroom a LOT more but I told myself those evil bacteria were leaving my system. I even got up the courage to go the library with my toddler. I felt brave and capable. I started cooking dinner before noon because I didn’t want to waste the good feelings.
Day 4: This day was pretty mellow and predictable as well. I could tell when the queasy feelings were coming and I rolled with them. That night though, I could not sleep well. I felt restless and uncomfortable.
Day 5: I think I went to the bathroom 14 times. Before noon. Seriously, you’re reading a post about H. Pylori. You can’t be surprised there’s bathroom talk, right? It was crazy. I didn’t feel sick. I just kept going. I had this feeling like I was just going to make it and it was going to be ok. I felt itchy feelings still, but they weren’t terrible. The roof of my mouth itched and my throat felt prickly, but I hoped that was just the winter cold germs that my kids abound with.
Day 6: We had a lot to do on this day; a Saturday with a family of 5 is never boring! One child had a friend over the night before for a sleepover. We had a mid-morning event to go to. Another child needed a haircut. And our friends, a family of 6, were coming to stay with us that night. I also had the worst headache of my entire life. I’m not kidding you. I’m not a “I have a headache” type of person. It rarely happens. But on this busy, family-oriented day, I was consumed by this pressure and pain. Again, I kept going, taking these pills every few hours, drinking water, eating as healthily as I could. Eventually, I just had to take a nap. The pressure was like a wide headband was on my head and something else, on the bridge of my nose. Pressure. Deep constant pressure. I wondered if that’s what a migraine felt like? Everything made it worse. I spent most of the afternoon in bed just feeling the discomfort. More detox? I may never know. That evening I noticed bumps on my back. Some looked like bug bites (my husband thought maybe a bug was in my sweater) and some looked like pimples. By the end of the night I had a lower back covered in what looked like pimples. My back had been clear that morning. I pushed down the panic rising up and googled symptoms of H. Pylori treatments. Acne is one of them. I told myself, “It’s acne”, and I went to bed.
Day 7: We spent the day with our friends and I felt really good for the most part. Grocery shopping, visiting, eating meals… it all seemed pretty easy. But again, in the evening, I felt the itchiness return. I showered and when I got out, I had puffy red spot all over my back, some on my stomach, and a few on my neck. It was hard not to panic.
I sat on the couch that evening feeling foggy-headed. I felt pretty panicky and it seemed like I couldn’t get enough oxygen into my head. I still had some pressure in my head and a gross feeling in my throat. I was hoping I wasn’t getting the cold that my daughters both had and I rubbed Eucalyptus oil on me to help with breathing, but I couldn’t find relief.
It has been years since I’ve felt that helpless. Or hopeless. I laid in bed that night crying to my husband that I just wanted to be unconscious. This is not living. It’s suffering. I slept hard that night.
Day 8: I had made it through a WHOLE WEEK! Yes, the night before was brutal, but I was okay, wasn’t I? I made it through the night. The red bumps went down to the pimple-looking things again and it was snowing. Okay, snow has very little to do with how I was feeling, but it sure was pretty to watch. And the kids stayed home, which was so wonderful. I held myself together that morning, waiting to hear from my NP. When one of her nurses called, I braced myself for what they would say. My anxiety was through the roof, which I believe firmly was physiologically induced but mentally triggered. She suggested I try Benadryl when my husband was home, in the evening when the itching was most noticeable and we would see what happened.
That night, I sat on the couch assessing myself. I was calm, crocheting, a little depressed and beaten down by this whole thing and feeling helpless still. I could feel a little itchiness in different spot all over my body and a tingling at the base of my skull, like that pressure-oxygen-thing was building back up. My husband thought it was a good time to take the Benadryl to see if it would help. I continued sitting and crocheting for an hour but I never felt a change. Normally, I would be knocked out by Benadryl, but I didn’t even feel tired. The queasiness in my stomach had abated, which was a relief, but the itches remained. I had a stuffy feeling in my head, but not a crazy, panicky, I-can’t-breathe-feeling. My throat stopped hurting, thankfully! I went to bed, more confused than ever. If this was a histamine reaction, wouldn’t the Benadryl have stopped it? Why didn’t the Benadryl knock me out? Why was I still itchy? All I could do was wait til the morning.
Day 9: I started the day as I normally would: breakfast, medicine, packing lunches. I felt pretty nauseous and also like I had a head cold, scratchy throat, stuffy nose, etc. When the nurse called, I felt the panic rise up in me. My stomach turned. I told her the results of our experiment and she said she thought my NP would start backing me off of the antibiotics. I hung up the phone and ran to the bathroom (thank you very much anxiety). I felt like I’d never be able to go to an appointment again, to sit in a room and deal with anything again. I felt defeated, like a shell of myself. How could I function normally, if anything out of the ordinary made me panic?
As I waited to hear from them, I took one child to school, (another was home sick), went to the library for books for the kids, and came home for lunch and meds. I felt defeated. What if, by cutting back on the antibiotics, this whole process was drawn out even longer? What if I didn’t get better after all? What if all of this was for nothing and I was worse off than before?
I spoke to another nurse right before lunch and she said to stop the Tetracycline immediately. Since the Benadryl did not reduce the itching, they wanted to make sure that I wouldn’t have anaphylaxis. I guess there’s really no way to know if that’s what I was heading toward or not. I asked if this would prevent or slow down my recovery and she said maybe a little, but hopefully not.
I tried to boost myself back up. I had completed 8 days. Some do triple therapy for 7 days with a 79% success rate. I did quadruple therapy for 8 days. That has to count for something. There had to be a light at the end of this tunnel. I left the Tetracycline out when I prepared my lunch medications. I made a note on my chart and hoped this would be a turning point.
When I went to bed that night I had a full blown head cold (remember that kid who stayed home sick?). I put a cold wet cloth on my head to help my sinus inflammation and I went to sleep.
In the middle of the night, our other daughter got up throwing up. By 5 a.m., I had her GI bug too. I couldn’t make this nightmare up if I tried. I spent Day 10 in the bathroom, trying to eat 4 times during the day in order to take my meds, knowing it wasn’t going to stay in my system long. It was an awful sickness and I was in tears, rocking in bed with nausea, missing time with my friend who was in town for a visit, and unable to care for myself or my family.
When I woke up on Day 11, I felt the GI bug was gone. I could sense that my body was stronger and less nauseous. I took a relieved breath and got up to start the day. Being very weak and fatigued from the illness, I asked my husband for help with the kids and I spent half of the day in bed. By midday, I was feeling better and moved to the couch. I showered and knew that tomorrow was going to be even better.
I was a little surprised to experience nausea on Day 12. I thought I’d be over it by then, but it wasn’t a GI bug nausea, it was different. I also felt my anxiety was on overdrive. I was shaking and crying to my husband that I couldn’t keep living this way. I spent the day on the couch eating when I needed to take medication and crocheting while my 2 year old son destroyed the house around me. By the afternoon, my back hurt really bad, right in the center, between my shoulder blades and a little farther down. Nothing I did could relieve it. So, I ate a banana and felt a bit of relief. I figured it was acid for some reason and I put a call in to the nurse to see if taking antacids was allowable. Of course it was a Friday and my NP was out and we were headed into a weekend…. I mean what could go wrong?
Antacids were approved. I tried to make it through dinner but the back pain, heartburn feelings and nausea were steadily creeping up on me. I begged my husband to go get me some Tums so maybe I could find relief. He did and then asked if I needed to go to the emergency room.
“I don’t trust them!” I cried. “They won’t understand the protocol I’ve been on or what could be happening! Last time you went, you probably had an ulcer and they gave you a prescription for Cipro (only the deadliest antibiotic out there) and told you to take an anti-diarrheal. They would kill me!”
I begged him to cross a professional line and contact my NP. Begged. He did. She said she thought I was having a gastric flare up, which can happen with the antibiotic Metronidazole. At this point, I wasn’t convinced that I wouldn’t die. The pain, burning and nausea was intermingled with racing heart, icy chest, sweating and chills. I was in the most horrific panic cycle I’d ever experienced and I didn’t see a way out. She advised that I stop the Metronidazole (which I’d already taken my last dose of the day for) and said I could take a Tums every 15 minutes, but not to exceed 6. She said to take another Omeprazole (a PPI) and continue to take 2 in the morning and 2 in the evening instead of 1. My husband made me a warm cup of water with ACV (apple cider vinegar) and honey in it.
I did everything I was told. I even added Benadryl to the mix in the hopes it would help me sleep at least. Eventually, I found a restless sleep that got me through the night, but when I awoke, I was back in my nightmare. Shaking. Sweating. Nausea. Racing heart. Burning stomach. Icy chest. Chills. I wondered again if I would die. Hello, Day 13.
One of my best friends had texted. She was leaving after being in town for a week. She was coming by to return our Pack-N-Play and I wasn’t in a position to see her. I was heartbroken. I cried.
My husband took over for me that day while I wrestled with panic demons and death fears. I begged him yet again to contact my NP. I felt like I was going to die. I told him I would go to the ER if she thought I should. She didn’t (thank God). She actually advised that I start drinking bone broth and she called in a prescription for anti-nausea medication.
I would do anything to avoid the hospital, and death. I drank cup after cup of broth. I found moments where I didn’t feel anything. I had forgotten what that felt like. I began to feel like I would live. I couldn’t eat. I was incredibly weak. But I knew I was going to live. It was the scariest 24 hours of my life. It was worse than childbirth. The unknown taunted me and the thought that it wouldn’t end was absolute torture.
I cried so many tears that day. My husband, frantically doing both of our jobs, juggling our children, the household needs, meals, dishes, and my bone broth needs was frantic. I wanted to hug him, to help him, to get up and join him, but I couldn’t. I was too busy trying not to succumb to yet another panic attack. My children made me notes and cards, they came to visit and talk, but I was too tired, too weak, too nauseous and too anxious to participate in anything with them and it broke my heart. I hugged them when I could. Smiled when I couldn’t.
I didn’t end up taking the anti-nausea med (Zofran). I couldn’t risk any other complications, side effects or challenges. I did drink quarts of bone broth. Lucky for us, we had just cooked up a batch (we cook it for 3 days) and it was ready to be consumed.
The nausea and anxiety cycle was like being out in an ocean where I couldn’t see land. I could see impending waves and when they would begin to rise up it took every ounce of concentration to stay on top of them. I could not risk letting them wash over me, sending me underwater, unable to breathe, tossed about and disoriented. I would feel the icy chill in my chest and my heart begin to race and I would close my eyes. Surviving each attack meant staying on top of the wave with my breathing, with my visualization, with focusing on all 5 senses to make sure I stayed grounded and did not get lost.
So, when I started Day 14 of a 14 day protocol, I did so knowing I was off of all antibiotics (so, was I still on a protocol?). I took double amounts of Omeprazole and continued with the Pink Bismuth. I ate a little food and continued consuming bone broth. I moved myself to the living room where I could be near my family again and I hoped. I hoped for healing. I hoped for recovery. I hoped for complete deliverance of the pain and nausea.
That’s my 14-day journey. It didn’t actually have a happy ending, did it? It didn’t really have an ending at all!
Here’s what I know: When I communicated with my NP, we had received my other stool sample results and I have SIBO. I also didn’t finish the H. Pylori protocol so that could be affecting me too. My decision was to start treatment for SIBO which includes herbal antibiotics and a strict diet called SCD (specific carbohydrate diet). The supplement formula I decided to go with is Metagenics (affiliate link below). According to the SIBO website, I will take 2 caps of each formula twice a day.
? Stool Tests… Why Don’t We Test Poop?
This question has haunted me throughout this experience. Why didn’t anyone test my poop over the last 4 years? I obviously had an experience where I took an antibiotic and began having panic attacks. I self-diagnosed myself with Candida and tried to treat it myself. It didn’t go well and I went to a Naturopath and did a huge blood work up, but no poop test. I spent 2015 and 2016 trying to maintain the health I had achieved with the Naturopath but I still wasn’t 100%. I got pregnant and had a baby. I pursued MTHFR treatment and found a greater degree of peace, but still not 100%. Throughout all of this, no one did a stool test. I actually wish I’d asked. I think I’ve been so tired of not feeling well, that I just kept hoping the right doctor would figure it all out and fix it. It took me getting this sick (internal-bleeding-kind-of-sick) before stool tests were on the table.
This is the test that was sent out via FedEx. It’s so comprehensive. Very impressive. Just read about it and tell me you’re going to insist on testing yourself through your practitioner. Or tell me to become a practitioner and I’ll order tests for you. Because this is IMPORTANT stuff! Genova Diagnostics.
Lesson? Ask for stool tests. If you have digestive OR psychological challenges, get a comprehensive panel of your stool. Find out if there’s an imbalance of any kind of bacteria that you can address to achieve optimal health! Check for SIBO, H. Pylori and parasites. You’re worth it.
Less than 24 hours after having my son, I was home with my husband, my two girls (one of whom had a birthday the day we came home), and my parents. It was a Thursday afternoon and I felt amazing. Tired, but amazing. I couldn’t remember the last time I’d slept and I was so high from the natural birth and the thrill of my perfect baby, I just continued to be awake, chatting with my family and staring at my baby’s perfection.
The newborn blur began as soon as we walked in the door. Diaper changes. Clothes. Getting the bed ready for us all. Breastfeeding around the clock. Working on a proper latch. And resting whenever I could. On Saturday we were having my youngest daughter’s 4th birthday party. I am pretty sure I was delusional when I thought I could have a birthday party for her, complete with snacks and decorations. But I did…
Some time on Saturday, between the stress of decorating for the party, the cramps and bleeding from being 2 days post-partum, being dressed and “on” for company, and taking care of a newborn, while trying to shower my birthday girl with attention, I began to notice something was wrong. Breastfeeding could hurt in the beginning. I’d experienced pain those first few days of nursing with my oldest. But I wasn’t finding any relief. The pain just continued and my brand new, perfect son, was not acting content after feedings. He would sleep for 5-10 minutes and then begin crying.
I kept feeding my baby, watching him drift into sweet sleep, handing him off to family members and visitors to hold, only to have him crying within minutes. He would be handed back to me and I would feed him again. The pain of latching wasn’t improving and he didn’t appear to be getting comfort or nourishment either. I thought, perhaps, when my milk came in things would get better.
I was wrong.
The Sunday that followed was dark. It was a dark day that led me down a dark week, and into a dark month. On very little sleep, I nursed around the clock. I felt my milk come in. I hoped it would help, but it didn’t. I nursed my baby everywhere. I started hearing a distinct clicking noise that I’d never heard before. I took videos and sent them to friends. I start asking La Leche groups and moms groups on Facebook what could possibly be happening. Tongue tie. Lip tie. Terms started flying at me and I wanted to dismiss them. But as I nursed him for the 5000th time that dark day, I began to crumble.
Though we had company, I could not get out of bed. I just laid there nursing every few minutes, in extreme pain. My nipples had started to bleed and I couldn’t find relief. I was clenching my jaw so tightly every time he latched, I felt like I would go into a panic if the pain continued. Meanwhile, the milk in my breasts continued to come in but I didn’t feel like any was going out. I cried and cried, alone in my dark bedroom, listening to my girls play and talk with family, wondering what I was going to do.
In a panic, I messaged with my doula who said she would be over as soon as she could. With authority, she said we needed privacy and our guests needed to leave. She said the last thing I needed was to be dressed and wearing a bra and trying to entertain. Off went the clothes. Skin-to-skin was all that mattered. She watched me nurse. She helped with latching. She gave me a schedule to give my bleeding nipples a break. She taught me to use the breast pump I’d had for 5 ½ years but never used. She confirmed there was a lip tie and maybe a tongue tie going on and encouraged me to see the chiropractor. She showed me how to feed the baby pumped milk with a spoon. I tried not to panic, but I was constantly scared he was starving and I couldn’t help him.
My chiropractor was on a flight that night that didn’t get in til after midnight. I messaged him and his wife. I needed to know if an adjustment would help my baby eat or if something more drastic was required. Every hour that passed by was torture-filled with pumping, painfully nursing, spoon-feeding, applying oils to my nipples and my breast tissue. I wore cabbage leaves to stop the painful engorgement from turning into an infection, and I mourned the newborn experience I had hoped to have. I can’t remember ever crying so much nor being so afraid.
My kind chiropractor, who was probably jet-lagged and sleep-deprived, met me and my dad at his office in the morning. I could feel my panic and nausea return as my postpartum body balked at the idea of being in public, standing, walking, conversing…. I handed over my fragile, precious, hungry newborn and watched him be examined with care and delicacy. My chiropractor did an adjustment, advised jaw massaging while nursing, and confirmed a lip and tongue tie. He wasn’t sure if the tongue tie needed to be removed, but the lip tie definitely did. He was allowing air in when he nursed, causing the chapping, blistering, and bleeding of my nipples. And his poor latch was preventing him from getting the milk he needed.
I was heart-broken. On the drive home I called the dentist I was referred to and tried to make an appointment for a frenectomy evaluation and procedure. The soonest they could do it was 10 days out. I started crying. I explained that I was hormonal and emotional. I apologized profusely and asked if there was anything they could do because my baby was hungry and I was in so much pain. Within the hour they called back and the dentist had agreed to do the evaluation and procedure on his lunch break the next day.
My husband had already missed work for the birth and was anxious about trying to get time off. My parents were getting ready to begin their 22 hour drive back home. The dentist was 3 hours away, just outside Baltimore, MD. My dad agreed to take me and I cannot tell you how grateful I was. I just needed progress. I needed something to give me hope.
That night, the dentist himself called me to talk about the procedure. I was shocked and impressed. He told me the youngest baby he’d worked on was 15 hours old. I thanked him for working through his lunch and he simply asked that I not bring him food, because sometimes people did that and he didn’t need it. I had to laugh. Of course, I’d thought about bringing him food, but couldn’t do much more than take care of my baby, let alone myself.
My friend volunteered to take the girls to and from school. My mom would stay at home so someone would be there when they got out. My husband left for work and my dad and I embarked on our 3 hour drive with my newborn. Bleeding. Cabbage leaves. Leaking milk. Exhausted. Nervous. And iron-deficient, no-doubt, I remember pieces of the drive. Chunks of conversation. Views out the window. Looking back at my sleeping newborn. Praying. Constantly praying.
In the office, I filled out paperwork, nervously watched patients come and go, chatted with some other people and waited my turn. I pulled out my Copaiba essential oil and whispered to my baby how everything would be okay. One woman had the nerve to comment, “In my day, you just suffered through those first couple of weeks of painful breastfeeding, but nowadays, everyone gets this lip-tie thing cut off.”
“I’ve had 2 other kids,” I informed her. “I know breastfeeding pain. But this exceeds that. And my baby cannot get enough milk because he can’t latch properly. Driving 3 hours isn’t convenient with a 5-day old baby. This is a necessity.” I bit my hormonal-tongue and decided that getting upset wasn’t going to make any of this easier.
During the exam, I was shown the lip-tie and the tongue-tie by the kind, happy dentist. He was at ease with the evaluation, my baby, and the procedure. I rubbed oil on his gums and held his hands while they began. As the gum tissue burned away I dizzily swayed a little and was asked if I was okay. Immediately, I thought, “This is not about me. All that matters is him.” I nodded. “I’m fine.” And they continued. Both the lip and tongue ties were lasered off and the tongue tie was cauterized. I thought it would never end. Immediately I nursed my baby, not caring about my own pain in that moment. I just wanted to comfort him.
It was a long drive home. My son slept off and on, he cried a lot. In the next 24 hours he would cry so much, I wouldn’t know what to do. I kept telling myself to give him 3 days to heal. So many people said day 3 was the worst. Thankfully for us, the worst was those first 24 hours. I never did end up giving him acetaminophen or ibuprofen. (Ibuprofen isn’t recommended on babies so young. Acetaminophen crosses the blood-brain-barrier and is linked to asthma and many other issues.) I did use some Copaiba on his gums and Helichrysum diluted on his feet. I worked diligently on his latch and continued pumping and nursing around the clock.
As we all recovered from the procedure and the trauma of it all, I realized my milk supply was diminishing. It seemed far too early for that and I panicked yet again. I was trying to feed him as much as possible, even through my own pain, but it still didn’t seem to be enough. We were up all hours of the day and night, him fussing and rooting to eat, and my cringing while trying to breastfeed him again and again and again.
A trip to a lactation consultant confirmed my fears: my baby was losing weight still and probably hungry. I couldn’t even get through a conversation with her as I sobbed and sobbed. I just wanted everything to get better. I had only had him in my arms for a week and a half and it had all been so miserable, so scary, so painful, and so completely unfair. I left the doctor’s office with a list of things to do: pumping after every feeding, spoon feeding all of the milk I pumped to him whenever he would take it, galactagogues to consume, and breast compressions. My doula helped with my milk supply issues as well by giving me homeopathic remedies, essential oils to apply topically and take internally, and more oils to help my painful nipples.
With my parents gone and my husband at work, I relied on my friends to take my kids to and from school and bring us dinners each day, while I worked literally around the clock to feed my baby. I didn’t know night from day except that sometimes I saw people and sometimes I didn’t. All I did was apply fennel and basil oil to my breast tissue, nurse, burp the baby, apply myrrh oil diluted in coconut oil to heal my nipples, pump, feed baby whatever milk I’d pumped before, drink water, drink hot lemon honey water with fennel oil in it, do his frenectomy exercises to help his gums and tongue tissue to heal, change his diaper, take care of my postpartum healing whenever possible, and ingest copious amounts of lactation cookies.
One of these days was a Saturday and my friend took the girls for us so my husband and I could be at home. He helped me through the initial learning curve as I developed a routine with all of it. He helped me make lactation cookies (or lactation pizza we joked, because the cookie dough flattened out and spread out all over the pan when it baked). At some point I became hooked on Downton Abbey and watched it continuously while I cycled unknowingly through day and night.
And still, a week later, at the lactation consultant, he hadn’t gained any weight. My heart raced as they weighed him and broke as they told me the number. I clung to the fact that he hadn’t lost any more weight. We were going to get through this. I was told I could slow down on pumping since my supply was up. I didn’t have to pump after EVERY nursing session anymore. Since the latch was improving and my nipples were healing, it was getting easier to nurse him, so we focused on that. The next week wasn’t as terrible, though I dreaded the next weigh-in.
I slowly returned to a routine, taking my girls to school and picking them up. I had friends over for playdates and started heating up frozen meals for our dinners. My sweet baby still didn’t sleep much, sometimes only 5-10 minutes at a time, and cried to nurse constantly, but I was there for him. I remembered how when he was born, I pulled him into my arms and said over and over, “We did it! We did it!” During this dark season I looked at him often and said, “We are doing this. We are doing this together. We are a team and we are going to get through this.”
At yet another appointment, the pediatrician was unconcerned with the weight, saying he had stabilized and seemed alert and more content. However, the lactation consultant wanted to continue seeing us until he got back up to birth weight. I felt vindicated and defeated all at once. I continued nursing him constantly, but slowed down on supplementing pumped milk because he was just spitting it out at that point.
It took three weeks, three long, dark, exhausting weeks to get my baby back up to birth weight. The day we did it, I rejoiced. I smothered him in kisses and cried. Finally, I was crying tears of joy, the kind I hadn’t shed since his birth. Finally, we were getting somewhere.
I don’t remember much else in that first month. I openly apologize to anyone I may not have responded to or for anything I did or didn’t do. In moments like these, nothing else matters but the health and well-being of your child. And in hindsight, I was a rockstar for my baby. I did the hardest work I’ve ever done. I know I couldn’t have succeeded without my husband and our friends’ support, but I also know that I made a choice to keep going through it all.
My baby is 3 months old now (at the time I originally wrote this). Sometimes when I pick him up at night to feed him, I chuckle at how much heavier he feels in my arms. Even when he nurses every 2 hours and I feel I can’t get anything accomplished, I am proud, proud to have this nursing relationship with him and proud that we got through such dark times together. He’s rolling everywhere now and has graduated out of the rock-n-play and into the pack-n-play, 3 months before schedule!. He’s slept through the night (once) and he sleeps wonderfully, overall. I still get emotional when I think of our first month. I sometimes feel I was robbed of the blissful newborn phase. I may mourn that for a while. Regardless of the sadness, we made it through.
New and breaking news: There is a local dentist (to us here in central Virginia) who now performs these laser frenectomy procedures! He is a dentist we’ve used and respect greatly: Dr. Browning in Waynesboro, VA!
I’ve meant to update about MTHFR and my health for so long! I’ve promised it to many and I’m finally sitting down to write it out. I think I arrived at such a better place after it that I forgot to post at all. I guess that’s a pretty good testament to this protocol!
If you want to know what MTHFR is (and you should, since nearly half of all Americans have it), check out this blog specifically about MTHFR. If you want to follow the journey of discovery and where I came from, see this post about antibiotics & anxiety and this one about Candida and this one about over-methylation.
My discovery of MTHFR began with a bug bite and a prescription that immediately caused panic attacks. It took me months to bounce back from that. I truly believe my discovery of MTHFR helped me to have a successful last pregnancyand a healthy last baby. But I still wasn’t feeling great.
When I had survived pregnancy,postpartum, baby’s tongue- and lip-ties, and was beginning to feel like a human again, I started to get serious about my symptoms. My most concerning symptom was this undercurrent of jitters. It wasn’t quite like anxiety, but more like a high, fast vibration that I couldn’t subdue. Oh sure, I could self-medicate with wine and I reduced sugar so as not to encourage it, but it was always there. I continued my regimen, but it wasn’t working.
I met with my NP, who is an expert with MTHFR. She presented me with a protocol that I was nervously excited to begin. She pointed out that my current regimen (which included a Thorne vitamin) was inconsistent for my needs. It was causing my jitters! All throughout my pregnancy and postpartum challenges, my vitamin was actually making things worse. Insert huge sigh here.
So here is what I did, including affiliate links below. (Purchasing via these links will not affect your price at all, but will contribute a tiny bit to the creation and maintenance of this blog.)
The First Step:
I purchased Seeking Health Active B12 5000. Sometimes this isn’t available on Amazon, but I’ve had no problem getting it directly from Seeking Health itself.
I cut a tab in fourths. For one week, I took a quarter of a tab every morning on an empty stomach. I kept careful watch over myself and my jitters. I didn’t feel terrible, but I didn’t feel better either.
After a week (or maybe 2, because I was scared to increase the dosage), I switched to a half of a tablet. This also seemed to settle pretty well. When you’re hypersensitive to every feeling in your body, thanks to years of anxiety, jitters, and uncertainty, it’s hard to know what’s causing what, but I convinced myself to trust the process.
The goal is to increase until a dose is uncomfortable and then step back to the previous dose that felt good. I tried off and on for weeks to get to 3/4 of a tablet. I had jitters. I had discomfort. I thought maybe it was a stomach bug one week. Another time I tried, I thought it was PMS messing with me. Or I didn’t get much sleep this week, so that could be it. So many possibilities, but I ended up back at half a tablet every time.
When I spoke to my NP about it she said it was clear to her that I was a half-er. And that’s ok! I wasn’t necessarily trying to get up to a point of tolerating a whole tablet of B12. I was trying to get up to my perfect dose and for many people a half is just good enough.
The Next Step:
Once I was on the dose that worked for me, the next step was to add in Folate. But not just any folate and definitely not folic acid. Methylfolate is the supplement needed since MTHFR prevents my body from being able to break down and absorb folate. I purchased Bluebonnet Earth Sweet Cellular Active Methylfolate 1000 mcg.
My mornings began with a half of a B12 tablet and a whole methylfolate tablet. And then I waited. Would I feel bad? Would it cause jitters? Would it make things better or worse?
Let me say that I felt better than I had in years. I felt energized and jitter-free and just so free in my body. I wish I could say that amazing feeling lasted, but I think my body got used to it and the euphoria settled into normalcy. I’m not complaining! I’ll take normal any day.
I cannot issue medical advice, but I am happy to share my journey and my resources with you. I think this protocol is worth trying if you have or suspect you have MTHFR. MTHFR is SO common and can cause so many issues, including but not limited to:
So, I had the doctor order me a blood test for MTHFR, despite his hesitation and questioning whether there was a diagnosis code he could use. You see, the medical world (mostly) views MTHFR only from a homocysteine perspective. Since I hadn’t had any heart problems or bad blood tests, there wasn’t much he could use for a diagnosis code. (Read: Fault in the system, since there are MANY things that could indicate MTHFR) He chose anxiety as a diagnosis code and time will tell whether the insurance company will pay for it.
Then I had to wait over the weekend for results. That was hard enough. I urged myself not to research because if it was negative, then where would I be? Come Monday morning my husband called me from work. I knew he wouldn’t call if it was negative. Nerves shaking, I answered his call. He told me the doctor wanted to talk to me. Okay, so it’s worse than I thought, I decided. Not exactly, I had to listen as the doctor talked to me about how the test isn’t easy to read and the result of the test doesn’t actually mean anything. (Was I hearing this correctly?) Finally, I asked, “Is there the number 1298 on the test?” When he confirmed, I asked if it was positive. He said, “Yes, but that doesn’t tell us anything.” On the contrary, it told me a lot. I had to wait to see the test with my own eyes that evening and figure out exactly what it meant.
There is so much to say about MTHFR, so much that is written about it and yet, so much that isn’t understood. To sum it up, an enzyme needed to break down folate (a necessary B vitamin) is compromised and doesn’t work efficiently. Think of all the foods that are “vitamin fortified” – they are fortified with folic acid (among others). If your body can’t break down folic acid (to turn it into methyl folate), it’s just another vitamin floating around unused in the body. Not only that, in its effort to turn into methyl folate, it blocks the receptors at the blood brain barrier, so real folate couldn’t get through if it tried. Remember how I posted that I didn’t have ANY B vitamins when I got my Organic Acids Test back? Big red flag. Since I take prenatals everyday and eat a very healthy diet, I should have had B vitamins! Too much folic acid and not enough folate (the natural version) can cause a lot of problems if your body doesn’t know how to break down folic acid and convert it to methyl folate. Basically folic acid is the synthetic version of the natural folate (found in spinach, garbanzo beans and lentils). When you can’t break folic acid down, it clogs the receptors in the brain, so they can’t get the natural folate either.
So what do I have? I have the Heterozygous 1298 / Normal 677. This means that one parent passed down a 1298 mutation. My test literally reads: “Positive for one copy of the A1298C variant”.
Check out this chart showing all the possible things that can be caused by MTHFR (images taken from : http://www.mindmeister.com/12694596/mthfr-related-health-problems )
I don’t know about you but if an estimated 50% of Americans have a mutated variant copy, don’t we deserve to know? If MTHFR is linked to all the above disorders and diseases, toxicity and addictions, shouldn’t we find out? What if something as simple as taking a methylated version of B vitamins is all we needed to feel better and help our bodies detoxify and thrive, while preventing disease?
Well, that’s my first step: methyl folate. I posted this on my Facebook page last week, but will share the affiliate link again below, because it’s worth knowing about:
Dr. Neil Rawlins of Richland, WA has researched MTHFR for years. When patients say they can’t afford the blood test, he suggests trying methyl folate (as shown above). If symptoms improve, it was a simple issue of methylation dysfunction. Yes, you deserve to know if you have an MTHFR variant. Yes, you deserve to know what can help it. But, if you, like many, can’t afford to test for it, you can try methyl folate in such a small dose as 1 mg a day, increasing gradually, and seeing how it helps you feel. Your body NEEDS methyl folate in order to create serotonin, dopamine and norepinephrine, among other neurotransmitters. The inability to convert folic acid to methyl folate can lead to depression, anxiety (ding! ding! ding!), fibromyalgia, chronic fatigue, migraines, schizophrenia, dementia, Parkinson’s disease, and more!
As we all know, folic acid (or folate) is necessary when trying to conceive. The catastrophe that could’ve happened had I gotten pregnant with zero vitamin B in my system is something that shakes me up every time I think of it. Many women with infertility issues and a history of miscarriages have an MTHFR variant. Many women (and men) are helped greatly by the inclusion of methylated vitamin B. Methyl folate is just one methylated B vitamin, but it is a crucial one to start the journey with.
I will speak further on over-methylation symptoms and treatments as well as the absence of a “magic pill” that makes everything better. Today, I just wanted to start the conversation and inform you of your right to know about this VERY COMMON gene variant and how it could be wreaking havoc on your health. Don’t let your doctor say, like mine did, that this is just something people are writing about on the Internet and we don’t see any connection to anxiety (or birth defects, or chronic fatigue), because it’s not true!
