Why My Acne Keeps My Doctor Up at Night

FYI: Before we get into today’s post, please be aware that nothing I write here is meant to be mistaken for professional medical advice. I am just chronicling my own journey and providing resources so you can learn more about it, but before you begin any diet and lifestyle change, please make sure you’re consulting your doctor and/or practitioner of your choice! Okay. Onto the post: 

Apparently, my detox issues keep my doctor up at night.

It’s been several weeks (and I’ve been through some serious, severe-ious protocols for detoxifying my body and getting my health back on track), so I figured I owed you all an update on my journey to heal my adult acne, amenorrhea, and other associated issues.

For those of you just jumping on board, here’s a  brief recap:



  • Stage 2 Adrenal Fatigue (Cortisol levels too low, causing fatigue, anxiety, and hormonal issues)
  • Thyroid imbalance (High reverse T3 and low T3, the opposite of how it should be)
  • Female hormone imbalance (out of whack levels of estrogen and progesterone)
  • Fungal infection in gut (symptoms include thyroid, hormonal, and anxiety issue–go figure!)
  • Anaplasmosis (tick bite? Not sure where this one came from…)
  • Epstein-Barr Virus (apparently one of the most common human viruses, basically chronic mono)
  • MTHFR homozygous C667t (the most potent form of a genetic polymorphism that makes it hard for my body to absorb and process folate–as well as make precursors to serotonin–contributes to anxiety, compulsive behavior, depression, acne, amenorrhea, and a whole host of other problems)

Okay. So that’s a lot of information. What the heck do we do with that?



As I’ve mentioned before, I’m working with a functional medicine doctor who is very knowledgeable in thyroid and female hormonal issues, so he knows what he’s doing when it comes to fixing people like me. Unfortunately, my body seems particularly resistant to detoxification, which is the primary way we’re trying to treat and heal my issues.

We started by addressing the female hormones and the adrenal fatigue. That didn’t work out, so we switched tracks and did the test that revealed the MTHFR polymorphism (which you can read about here.)

We decided that this would be the next best thing to tackle, since my MTHFR problem has made it very difficult for my body to participate in a phenomenon known as “methylation,” which plays a large role in detoxification. All of the other things we would try could potentially be thwarted if my body were not properly detoxifying.

And so…methylation began.

And it was not pretty.

I mean….really not pretty.

Wanna see?


Day 1


Day 4


Day 8


Day 10. And then I gave up. Get me antibiotics, stat!


Almost immediately post-antibiotics


Acne scars. Hooray.

(I warned you…)

What caused this horrific reaction? Not entirely sure, but I had begun taking a supplement called “quatrefolic methylfolate,” which is a more bioavailable form of folate that your typical folic acid supplement. My doctor also had me take a sublingual B12 supplement for a week before beginning the MTHFR supplement, as well as a B-complex vitamin, a probiotic, and cod liver oil.

The goal was to start small–one L-MTHF per day, working my way up to two pills, two times per day. To that, I say, “HA.”

After enduring the pain/shame/embarrassment of having to go out in public with my face covered in craters for about 2 weeks, I ended up on an antibiotic. Within a few days, my face cleared up.

Ten days of gut-destroying antibiotics later, I was back at baseline, with the same amount of annoying hormonal acne destroying my chin, cheeks, and jawline.

[Just an aside here: dealing with the destruction of my skin has been one of the most awful processes I’ve ever had to endure. Want to talk about body dysmorphia? The face I see in the mirror now is not the face I once had. The scars I bear were never a part of me before, and now they belong to this new person that I have become. As vain as it might seem, seeing my face in the mirror is one of the most difficult things I have to endure, because I no longer feel beautiful. It sounds so silly, as I type this out–but it’s how I feel, and coming to grips with this scar-ridden “me,” has been one of the hardest things I’ve had to deal with in my current journey of recovery.]

Throughout this whole process, I was eating a strict autoimmune diet, meaning that I wasn’t consuming vegetables from the nightshade family (tomatoes, eggplant, potatoes, peppers), nuts/seeds, or eggs.

Now, for those of you out there who struggle with disordered eating, I don’t recommend restriction–but for my own particular health issue, I am at a place in my recovery where I can handle removing certain food groups for a period of time in a controlled elimination diet without it having adverse affects on my mental state or my progress. If anything, removing potentially reactive foods offers the opportunity to heal some of the issues I am dealing with.

The problem was that, after more than a month of eating this way, nothing changed. In fact, my joints–especially my fingers–which had started to become swollen when I first started the whole functional medicine journey a couple of months ago, seemed to get worse, which is the opposite of what should be happening when following an autoimmune protocol.

Another meeting with my doctor led to a conversation that I really wasn’t ready to have. This time, he wanted me to rule out food as a potential problem all together.

I’m not going to go into the details of the cleanse that I was asked to do because I don’t want to provide any triggers, but suffice it to say that we’ve “taken food off the table” as a main cause of my health problems at this point.*

(In fact, my doctor said, “Some people do this cleanse feel amazing almost immediately…and some don’t.” Guess that’s me.)

So what are the next steps?

Because I’m “so sensitive,” it looks like we’re going to be taking baby steps. We’ll keep up the MTHFR stuff, but we’re going to address the gut. In addition to some adaptogenic herbs and detox support, I’m going to be adding digestive enzymes, oregano oil, and something called Microb-x (the latter two supplements acting as antimicrobials to get rid of whatever’s plaguing my insides).

For now, I’m back to eating a mostly autoimmune diet (I might try to throw eggs and tomatoes back into the picture to see how I do) and dealing with minor breakouts and anxiety issues. (And of course the swollen joints and no period, but, hey, who’s counting?)

I won’t start the gut healing protocol until the mountains of supplements** arrive on my doorstep…but, as always, I’ll keep you updated.

Those of you who are working to heal chronic health issues, have you had to navigate the fine line between an elimination diet and a restrictive mindset? How have chronic health issues impacted your relationship with food, diet, and body image? 

Stay hungry,


*I do not recommend that you attempt anything to “cleanse” or “detox” your body, especially if you a) struggle with any sort of disordered eating/body image issues and b) are not working with a doctor or coach. There is such a fine, fine line between doing any sort of elimination or detox protocol to understand how your foods are affecting you and to control weight. Please, if you are even considering any sort of cleanse or detox because the health gurus are pushing it as a miracle weight loss/clean out/health fix and you are a disordered eater/exerciser, please reconsider or, if you’re hellbent on doing something like this, make sure you have a doctor or healthcare practitioner working with you. If you are not at a mental or emotional place where you can handle the potential effects of any sort of restriction, even in the short term, I would urge you to find another way to address any of your health issues.

**Re: supplements: I don’t think we should be taking (most) supplements as a long-term strategy for health. As a short-term intervention for dealing with chronic issues like leaky gut, hormonal imbalances, and such, they’re the bee’s knees. But for the most part, we should seek as much nutrition as we can from food first. That said, there are some “supplements”+ like cod liver oil that are definitely good additions to your diet. And if you’re someone who needs additional support due to something like the MTHFR polymorphism, where you actually become nutrient deficient because of a bodily process (or lack thereof), then supplements are necessary. But we shouldn’t have to spend 1/3 of our monthly paychecks every month just to function, in my honest opinion…

+Technically cod liver oil is just a food, but we view it as a supplement in our highly medicated society. Sometimes I wish we knew how to adopt an entirely different language to talk about nutrition–for example, all of this BS about “superfoods.” It’s a marketing term, a packaging term, a selling term…I think any “real” food is a superfood in its own way. And while one food might boost your vitamin X or your hormone Y, it’s not about breaking foods down into package-able nutrients and selling them one-off for whatever your condition might be.

18 thoughts on “Why My Acne Keeps My Doctor Up at Night

  1. I don’t have the exact same issues that you have, but my health history has been very similar. Want to know what has helped me most? Just stopping. Stopping questioning every single reaction and spending thousands of dollars on supplements and tests that didn’t actually help. Letting go. Eating food that I feel like eating (within certain constraints do to my issue, but yes, that means not eating strict paleo. Sometimes a piece of toast made from actual flour is just as healing as bone broth and cod liver oil). Having fun. Stopping making my diagnosis and my trying to fix my health issues my whole being. I’m not saying that my health issues have been ignored, I’ve just stopped making them so much WORK, and have been trying to focus on listening to what my body actually wants, and calming down.

    • Hi Kate!

      Thank you so much for the reply. I absolutely hear you–the anxiety surrounding restriction of any kind can be devastating, and often worse than the pain caused by the problems we’re trying to heal.

      I know that there is a very fine line between orthorexia and healing, especially in the case of doing things like cleanses or special diets, etc. The problem for me is that just “eating the food” hasn’t made things better, and in many cases makes me feel worse (ex: stomach and skin problems from dairy, brain fog and bloat from grains, complete breakout from chewing gum). I think there’s definitely something to be said for focusing on what our bodies really want, and that’s going to look different for everyone. I’m still learning how to re-tune in to my body and find my own hunger…which is difficult but a necessary part of this whole process that I’ve been chronicling.

      I also think there are some deeper underlying issues that can’t be addressed with just food (or just “eating the food”), and that’s unfortunately where all of the other functional medicine stuff comes in. But it’s a process of trial and error, and unfortunately that means some errors will be made along the way…Ah, well…!

      All I know is that, while I’m no biohacker, I do want to understand how my body works and why–and so I’m probably going to keep asking questions and keep experimenting until I can get to the underlying causes and fix them. Not having a period for more than a year has been really hard on me–mentally and physically–and of all of the symptoms, it’s the one thing that I really, really, really want to fix…and I don’t think it’s something that can just regulate on its own. But we’ll see! Thanks for following along on the journey!

      Stay hungry,


  2. Hey there! I’d like to premise this by saying I’m not trying to be preachy, but at the same time I have a lot of things to say. I’ll try to keep it brief.

    It really seems to me like the two problems that absolutely have to be addressed are the thyroid and sex hormone imbalances. The others I’m personally quite dubious about. Adrenal fatigue is not actually a real disease; it’s basically been made up so that people can make money treating it. Adrenal insufficiency (Addison’s disease) is real, but you don’t seem to have that. Having antibodies to the epstien barr virus isn’t really meaningful, unless you have an active viral infection going on right now, in which case I hope you get better soon! Not sure about the tick virus either, but probably antibodies? What evidence do you have of a bad fungal infection in the gut? While this can be a real diagnosis, it’s one of those that tend to be incredibly overdiagnosed and just lead people to have a miserable time trying to not eat foods that feet the fungi, but it’s really not a problem in the first place. The symptoms you are blaming on the fungal infection seem to me to be a huge leap in faith–there are so many other more likely explanations, no?

    Lastly, with the MTHFR mutation–while certainly a real mutation–the question is to what extent is it worth addressing. What problems is it causing or could it cause in the future, and will taking those supplements solve any of it. The fact is the research shows very little evidence that lowering homocysteine levels is actually helpful in maintaining better health. Here are a few paragraphs from the first review article I could find that didn’t require me logging into the library system to access pubmed. However, I’ve researched this before and seen very similar assertions in many papers.

    “It is not clear whether lowering homocysteine levels actually decreases the risk for atherosclerosis and thrombosis. So far, only 2 clinical studies have been published on this issue.3,4 Although in these studies folic acid and vitamin B complex (made up of vitamins B6 and B12) were successful in lowering homocysteine levels, no clinical benefit was seen; ie, the lowering of homocysteine levels did not result in fewer heart attacks, strokes, or venous blood clots. This lends support to the notion that homocysteine may not be the cause of thrombosis and atherosclerosis but rather a byproduct of blood vessel damage that occurs through other mechanisms. One could therefore argue that there is no reason to treat elevated homocysteine levels, and this is perhaps true. However, at this point, many practitioners recommend treating elevated homocysteine levels because (1) it is still possible that an elevated homocysteine level contributes to the risk for thrombosis and atherosclerosis and that lowering its levels is beneficial and (2) treatment with folic acid and vitamins B6 and B12 appears to be safe. More research is needed to determine whether lowering homocysteine levels has any benefit. At this point, it is important that patients (and practitioners) do not overrate the importance of folic acid and vitamin B complex therapy.”

    “Studies have been conducted to investigate whether having 2 MTHFR mutations increases the risk of blood clots in the arteries, blood clots in the veins, or CAD.9,10 Overall, evidence from these studies indicates that, so long as the homocysteine level is normal, MTHFR mutations do not significantly increase the risk of heart attack or stroke. Studies investigating the association of MTHFR mutations and venous blood clots have been inconsistent, with some studies showing a slight association, but most studies have not shown any association. Although a few studies have suggested that MTHFR mutations may interact with other inherited risk factors for clotting disorders (such as a gene mutation called factor V Leiden; see also Cardiology Patient Page11), most studies show that the MTHFR mutations do not further increase the clotting risk associated with factor V Leiden.

    MTHFR mutations have been linked in some studies to an increased chance of having a baby with a neural tube defect (spina bifida).8 One study suggested that mothers with 2 MTHFR mutations were twice as likely to have a baby with a neural tube defect, whereas other studies have not supported this finding. Recent research has implied that risks vary, based on the nutritional status of the mother (ie, folate levels, vitamin intake) and whether or not she has an elevated homocysteine level.12 Because of this controversy, some practitioners may recommend extra folate supplementation (usually 4 mg) for women with 2 MTHFR mutations, whereas other practitioners will recommend normal use of prenatal vitamins containing folic acid for a woman who does not have an elevated homocysteine level.

    There is also conflicting evidence about the relation between homozygous MTHFR mutations and pregnancy complications (including preeclampsia, placental abruption, recurrent pregnancy loss, and intrauterine growth restriction, as described earlier). A recent meta-analysis, which combined all of the data from these studies, found that there was not an association between MTHFR and recurrent pregnancy loss.13 It seems that homozygous MTHFR may moderately increase the risk of preeclampsia and placental abruption, but more research in this area is necessary. Although it is not standard medical practice to test for MTHFR mutations when a woman has a history of these complications, some practitioners may order this testing.”

    Basically, the problems I have read about that this mutation might cause are very different from the ones you’re thinking of—and I think it’s really worthwhile to ask why. Why is there a huge divide between what’s been studied experimentally and clinically and what’s written about as more “popular health topics” online. Unfortunately, again, I’m afraid there are a lot of people who like to make money selling supplements and offering advice that might not be so sage.

    I think you’re an extremely thoughtful person, but it’s so, so easy to want to believe something such that taking a step back and thinking critically about it beyond the picture that’s been so neatly painted for you is very challenging. Upsetting even. So many times I’ve wanted to believe in made-up diseases as being the cause of many of my problems, but in the end I’ve always found the same thing–no relief from the real and clear symptoms (things like not having a period and adult acne), money spent on useless (if not harmful) supplements. and consultations with doctors who, sadly I’ve found, quack more than they talk reason.


    • Thank you so, so much for the amazingly detailed comment–and for providing all of the research, etc. Honestly, I really, really appreciate it!!

      You’re right–there’s a lot of quackery out there, and a lot of dubious science, and I’m definitely dabbling in it. The question is: if not this, then what?

      Trying to work on my hormones/thyroid caused horrific reactions (skin, gut, etc.). Not doing anything for any of these issues just let the problems that I’ve been having for years (and the problems that have gotten worse over the years) persist.

      Some of the advice I’ve gotten is to just go the conventional medicine route (cover the symptom! take a drug! birth control/antibiotics/accutane!), but I refuse to accept that that’s my only answer, especially when I’ve tried many of the western “cures” only to have worse symptoms in other areas (birth control = suicidal tendencies and depression, for example), and it just doesn’t seem worth it.

      At this point, I’m willing to look at functional medicine as a possibility. I’m still approaching it with skepticism, but I’m more agnostic about it than I used to be–I want to be proven wrong, so I’m giving it a chance.

      I also do think that the disparity between the published literature and the anecdotal evidence occurs for the same reason that we live in a culture that still predominantly subscribes to the lipid hypothesis. Just because it’s the study that gets funded doesn’t mean that it’s the only thing we have to learn about the topic. I’m not necessarily saying that I believe 100% in all of the stuff that’s written about MTHFR in the Facebook support groups, for example, but I’m willing to listen because everything else has failed me until now…

      The worst thing that could happen is that things continue to not improve and I continue to not get better…

      • I hear you, totally. Been there done that. 😛

        But in all seriousness, I think where the dabbling becomes wasteful is things like “adrenal fatigue”. Buying supplements and paying someone for advice on a disease that doesn’t exist simply does not make sense to me anymore.

        I guess for me it’s come down to this–there is no.such.thing as conventional medicine or as alternative medicine, there is only medicine. Medicine comes in various modalities, all of which can have healing properties: chemical (and it makes zero difference if the chemical comes from a plant or a lab, it’s a series of atoms connected to each other that bind to a receptor in the body and change biochemical pathways); manipulative (ranging from surgery to massage), and psychological (talk therapy can be very effective, and if there’s one thing “functional” or “alternative” medicine definitely gets right, it’s the power of the placebo effect). What makes medicine medicine, and not quackery, is that it works, repeatedly, with many double blind trials whose results can be aggregated. Of course, new treatments have to come from somewhere and start being tested on humans eventually, so it’s not like everything can be backed up by 50 years of clinical evidence, but still the point holds. Medicine = treatments that can be shown to work broadly and reliable. Sometimes certain treatments will have very bad side effects on a small segment of the population. That doesn’t make them bad, it just means there are risks associated with medicine. But that’s true for anything you put in your body. I mean, some people are allergic to meat, but that doesn’t mean we shouldn’t eat it…or that it’s suddenly a bad approach to nourishing the body.

        That being said, in reply to your problems with “conventional” medicine, I just want to add that it’s not like everything just covers symptoms. Accutane actually changes the oil glands to stop the root problem of acne. For some people, genetically, their sex hormone production is imbalanced. To me this is akin to someone being partially deaf (bad genetic luck) and acting like anything but a hearing implant will help. Not that sex hormones aren’t affected by things that we can change “organically” (like by eating better, having enough body fat, not obsessively exercising, etc). But in the end, there are millions of women who do all that and will still have out of whack estrogen, and will have consequences ranging from acne to facial hair to amenorrhea. At that point, hormone therapy is treating the cause of the other problems that the hormone imbalance causes. I’m not sure what else could be a more causal fix–some sort of genetic therapy perhaps, but scientifically we’re not there yet. (Please note that I’m not saying that this is necessarily the case for you). But still, the idea that “conventional” medicine only covers symptoms is verily untrue. Also, if “alternative” medicine treatments can actually change hormones, then they’re doing something very fundamental to the body–just like prescription drugs (for example, a birth control pill) are. They’re absolutely the same thing. Why we perceive one as natural and one as chemical is something interesting to ponder, but to me it also seems wholly flawed.

        One last idea–and a nutritional one, I should add–about the T3 and T4 hormones. Glucose is the preferred molecule by the liver when converting thyroxine (T4) to triiodothyronine (T3). While there are other mechanisms for this, people who eat unusually low carb diets can be more prone to problems with the conversion. Maybe try adding in a significant increase in potatoes or white rice for a bit, and see if it helps?

  3. Hi there! I came across your blog through, uhm, a link I think? Ah yes! From Nourishing the Soul! And I’m really enjoying your blog so far, good work 🙂 I’m commenting here because I so, so feel your pain when it comes to acne – I developed adult acne almost five years ago, mid-twenties, after a lifetime of perfect skin and after a year of a vegan diet. I tried heaps of stuff, both diet and otherwise, but it was never, ever worse than when I was changing my diet up all the time. My feeling is that, of course changing my diet made it worse, as changing my diet was what had likely led to the acne developing in the first place. However, I couldn’t accept that until I’d gone through eating disorder recovery – before recovery, everything was about diet to me.

    Then I stumbled across this: http://practicalbohemianbeauty.blogspot.com.au/2012/05/clearing-clogged-pores-salicylic-acid.html

    And as convinced as I was that my acne was hormone related, as I would get the same breakouts in the same place and the same times – ovulation and menstruation, and also when very stressed, I tried it anyway, and my skin cleared up in 10 weeks. I know it’s not a magical cure-all for everyone, but I do think that although the acne was initially caused by dietary changes and hormonal responses, and then triggered by hormone stuff, the method described in Miri’s blog above is what allowed my skin to heal – like, maybe it might have gotten better on its own over many years, as my body recovered fully from the hell I put it through, but this sped the process up from the outside. Especially since with blocked pores and sebum dysregulation, part of the problem is that your skin is trying to detoxify but because of internal imbalances, the sebum’s too thick and literally can’t do its job properly.

    Anyway, here’s another link where she goes over all the elements of her method: http://practicalbohemianbeauty.blogspot.com.au/p/clearing-clogged-pores-recipes-and-tips.html

    I did my own research and got the different ingredients separately because I’m not in the U.S., she goes into lots of detail about ingredients and exactly how to mix them up, so you *can* do it all yourself without having to buy any of her stuff, but if I was in the U.S. I probably just would’ve bought the kits from her. I think she probably only makes like $5 profit off them, and it was a hassle to find all the ingredients separately, but I’m a nerd so I kinda enjoyed sourcing it all.

    Best to you Xoxo

  4. Sorry to comment twice, I’ve been browsing your blog some more! I just wanted to say, very gently, that there is evidence both scientific and anecdotal that low-carb or ketogenic diets can induce or contribute to amenorrhea, even in the absence of caloric restriction. And that many of your symptoms, including the amenorrhea, are becoming increasingly more common among young women following ancestral low-carb clean diets. Some great starting points are Scott Abel’s FB page, and Amber of GoKaleo’s blog and FB page. Again, all the best.

    • I’ve definitely heard that as well, and I do read GoKaleo (although the ETF FB page I’ve found to be VERY triggering)…I’ve actually bumped up the carbs massively since March of this year–I don’t think my diet could currently be construed in any way as “low carb” (except maybe when compared with the SAD) these days…Chalk it up to a fruit addiction (seriously, I can go through 2 lbs of grapes without batting an eye!) , but there you have it…I’m still trying to find balance–mentally, I feel more clear and less anxious when I eat fewer carbs, but I’ve found myself erring on the side of fruit and starchier carbs more often than not these days…

  5. I hope I’m not imposing, but since I have a thyroid problem (Hashimotos, that was only diagnosed after years of persistence, and after years of suffering needlessly) and have gone through some of what you have gone through (when I was in my late teens through my entire 20’s), I’m going to go out on a limb and tell you that I feel many of your issues, including the acne is stemming from a bum thyroid. Of all the thyroid hormones, t3 is most important. Just from looking at you, and your eyebrows, I am pretty certain that this is a big bulk of your issues (acne, anxiety, compulsions). I had them too. I still, to some degree, have some social anxiety, but it’s so much better! Email if you have questions. Rooting for you! P.s. I’m wondering if I have that mother-you know what-issue too (Mthfr)lol. P.s. Adrenal fatigue most certainly exists (sorry curious-ally) especially if you have any autoimmune issues taxing your body. For me, my Hashimotos, that went undiagnosed for years, plus two children later, caused my adrenals to go down the tubes.

    • Hey Dee!

      Thanks for “imposing” (you’re not, by the way! I’m putting my health out on the internet because I want to be able to connect with others like you and hear your thoughts and opinions!)

      I actually DO have a thyroid problem–confirmed by blood tests and all. According to my doc, it’s not irreversible, so I’m hoping that once we clear up some of my detoxification issues, we can cycle back and work on the hormones.

      It’s definitely worth finding out about the MTHFR. I just confirmed it with a 23andMe test–going to do a post on it soon!

      Thanks again for sharing, and stay hungry!


  6. That is a good plan! Get your adrenals up and running, remedy any deficiencies (ferritin, b12, vit D), get in some good adrenal support (depending on your BP: licorice root is a good one, rhodiola rosea is great with little side effects, pregnelelone is one to try or if really bad, bio-cortisol) and THEN you can start to address thyroid. I think the thyroid treatment (I prefer armour, but some really like time release t3, and since you are low, it might be the ticket) will really bring about the most drastic changes for you! Keep me posted. You have my email, right? I used to run a thyroid board, but as you know, stopthethyroidmadness.com has great info too and they have many who are willing to help as well!! Good luck and Happy Halloween!!!!

    • Thanks, Dee! My functional med doc just started me on licorice root…we were doing pregnenolone for a while, but we scaled things back. Working on the gut and adrenals, and slowly progressing from there…

      I’ll definitely hit you up with questions as they arise–thanks so much for your help 😀

  7. Oh, by the way, i am taking something called serrapeptase by doctors best. Look it up. I have found that by taking it, it has allowed any zits to clear up faster as it breaks down dead tissue. It has many, many benefits way beyond acne and I want to say that several Mthfr peeps are taking it too. It’s something I just discovered! Worth a months’s try as it is cheap. I get mine off amazon! And btw, as annoying as oily, acne prone skin is, the one big benefit I have found (maybe the only lol) is younger skin. I’m 42 and don’t look it!! If you can get the eruptions down, the oilier skin is a plus at keeping your skin lubricated. Let me correct that, you WILL get the eruption under control in time!! It’s just finding that needle in a haystack, unfortunately.

  8. Great post! Just came across your blog. My son who has had severe sensory processing disorder, Aspergers, recurrent shingles, kidney stones, severe fatigue, connective tissue disorder unspecified, and hypotonia was dxd with MTHFR last spring. He’s getting better now because we’re seeing a doc like yours who is carefully figuring out the pieces to his puzzle. He is getting well! Stay your course. The journey is confusing sometimes and there will be adjustments to your sail, but you can do this and it’s completely worth it.

    • Thanks so much, Sara Ann! I am so sorry that you’ve had to go through so much with your son, but sometimes it’s the struggle that makes it all worth it. I’m wishing you both so much luck on your journey–and I’d love to know more about the discoveries you’ve made with your functional doc, if you’re willing to share! I’ll be keeping everyone updated here as I go through this process of healing from the inside out as well…

      Stay hungry!

      • Hi Kaila,
        Sorry to just now get back with you after your very kind words. I’d be happy to share our journey but will try to condense it since it’s a long one. I do want to add a preface though. I found your site because I’m searching out info on MTHFR, but my son doesn’t have an eating disorder. I just wanted to say that because I don’t know very much about eating disorders and don’t think that my sharing our experiences should be taken as advise. However, if a few of your readers have MTHFR or B-12 deficiencies due to other causes they could possibly relate.

        My son was first diagnosed with Sensory Processing Disorder at age 4. To this day, I think this disorder best describes the symptoms and what was going on with his nervous system. He had a lot of hypersensitivies to sound and light and touch. At the same time, he could not smell. To some degree he also had a confusion of the senses: a room painted red made him cover his ears and curl up into the fetal position as if someone were hurting him. He had a lot of anxiety and odd fears. He had trouble with depth perception and body space awareness. He was incredibly clumsy with an awkward gait and had trouble with gross and fine motor skills. He also had muscle wasting so bad I could wrap my hand around his upper thigh and my fingers would touch.

        We dealt with this with lots of occupational, physical, and speech therapy and tried to keep him off sugar. All of which alleviated his struggles, but certainly didn’t cure him.

        During this time, he also had really bad, unexplainable vomiting spells and severe reflux. The doc at that point put him on an acid reflux med and referred him to a gastrodoc who confirmed he had reflux and confirmed he should stay on the acid reflux meds.

        That year, 2nd grade, was absolutely the worst of his life. He developed a lot of classic autism symptoms, rocking, spinning at the edge of the playground, limited interaction with friends. His senses were suddenly on full alert and he needed to wear a hat and sunglasses inside the classroom just to function. He began to have severe depression and would get under his desk and cry because he thought the other kids hated him. He would come home and crawl under the dining room table and just rock for a long time. He could no longer read past a page at a time without becoming severely fatigued.

        At the end of that year, we saw an “autism specialist” in a local big city at a prestigious university, ahem. He diagnosed my son with Asperger’s, insisted that he could not just have gotten worse than year, that I had been in denial about his issues. He insisted that all of his gut problems which were pretty severe by that point were due to his anxiety level and that I was being cruel to keep him off anti-anxiety meds. He was just 8 years old at that time and there was no way I was putting an 8 year old on anti-anxiety meds. I told him that I thought his anxiety issues were due to the fact that his stomach hurt so bad 24/7. He referred me to a psychiatrist.

        Instead I went to see a nutritionist and an allergist. I tried the gluten free/dairy free diet. My son’s symptoms improved dramatically. His stomach stopped hurting, he began dramatic improvements in social/emotional skills, and started making major headway in Occupational Therapy and Speech. At this point, my primary and his therapists all became big believers in the gf/cf diet.

        However, my son continued to struggle with immune system problems including shingles outbreaks. He passed a first kidney stone around 5th grade and ultrasounds showed continuing problems for the next few years. Those issues were treated with high dosage potassium. Then in 7&8th grade he just became weaker and weaker, more and more fatigued. His teachers expressed a lot of worry and really took good care of him, letting him lay down and rest when he needed to. He landed a major role in the musical and the directors choreographed him out of a few numbers because he was so weak during practices. They let him go sleep during a few practices too.

        So after the gf/cf diet change, I spent the next few years experimenting with supplements. Epson salt baths worked wonders for his anxiety. Probiotics helped his gut. I put him on a high dose “autism” multi-vitamin, but never could say whether this helped him or not. I also noticed a dramatic improvement in the number of colds we all got the winter I first learned about BPA and removed all our BPA dishes. There were several supplements I wanted to try, but I just felt like I could spend a fortune with it and not really know anything. We also progressed to the Paleo diet last year because both his doc and our allergist felt like it would help his muscles. It didn’t help, but it did get rid of chronic nasal drip.

        Then 2 years ago, the worst news came. A podiatrist identified that he had a major connective tissue issue. Connective tissue connects your joints but it also connects and forms your organs. The connective tissue laxity had been listed as a symptom by that “autism” specialist years before, but was swept under the “autism rug” as just another character trait of an autistic child. It turns out it’s a big deal. Our son was put in ankle and wrist braces because his connective tissue was so loose his bones were not meeting correctly and the edges of his bones were grinding down. Not only this, but if it was being caused by a progressive disorder then my son could end up with major bone and organ problems. He urged us to get to the bottom of this and not just consider it an autism issue.

        We then floated to a few specialists, but no one really had a clue. Then my son had another bad round of shingles and a friend mentioned trying l-lyciene. That whole issue of just throwing money and supplements at the problem began gnawing at me again. I mentioned this to the owner of the health food store and he said, “Why don’t you get a NutrEval? Most insurance companies will pay for it.” It’s basically a blood test that shows what your body is absorbing and what your body is doing with the absorbed material. It also shows lots of other things like bad bacteria levels, heavy metal levels, and oxidation issues. He recommended an Integrative Medicine doctor locally. This is similar to your functional medicine doctor.

        This doctor and the tests he has run has proved to be a complete game changer. It turned out that our son has the MTHFR gene and was barely absorbing any b vitamins. The high dose “autism” multi-vitamin that I’d had him on contained a high dose of folic acid. MTHFR people can’t have folic acid. My son also had high levels of amino acids in his urine because there were no b vitamins in his blood that could turn those bad boys into muscles, hence the muscle wasting year after year despite the Paleo Diet. My son also had major bad bacteria and very little good bacteria. The probiotics I had him on were like drops of Visine to a man standing in the Sahara during a sand storm: not enough. He also had severely low hormone levels, everything was low. Everything.

        This doc has unraveled some major mysteries in the last year. B-12 deficiency was huge, because it causes huge problems. Sensory Processing Disorder symptoms are nearly identical to B-12 deficiency problems. When the gastro put him on acid reflux meds it further depleted what little B-12 and folate were in his body and everything that happened that year lines up with severe deficiency problems. Gluten and dairy intolerance also depletes B-12 and folate so when no wonder he began to improve on gf/cf. Getting the right type of basic problems became a key element for my son’s recovery.

        Now, even without physical therapy, my son is finally gaining muscles. He’s also got more energy than he has had in two years and has stopped having to have fatigue assistance in the middle of school. The most recent lab came in this morning and his hormone levels are all in normal range and that was without supplementing the hormones, just the b vitamins! He has had a breakout of acne, but he’s a fifteen year old boy and doesn’t care too much. (I think I will try that serrapeptase recommended above.)

        We still have more to figure out. The Integrative Medicine doc has carefully added supplements based on the tests and has me add them at home in a staggered way so that we know if the supplement is helping or not. Slowly his blood levels of inflammation (also found in intial NutrEval) are coming down and his good bacteria is coming up.

        I’ve also found several MTHFR sites that are incredibly helpful, including the amazing forum on Phoenix Rising. They are patients reporting on what works and what doesn’t. They also have very thorough updates and links to every study that comes out. My brother and I both have some chronic health problems that could also be explained by the MTHFR so we have been canvasing the Internet for news and updates and other people who are going through this. I know there are a lot of naysayers out there that think this is nothing, but they are ignoring (or hiding) the data that keeps coming out every year. I know there is also this huge segment of the medical world that are dismissing epigenetics entirely, but this isn’t just a one size fits all fad. This is finally looking at patients as individuals and their underlying causes as unique to them. I finally have hope that my son will live a really good life.

        Thanks, Kaila, for letting me share. I hope you are able to uproot all of your unique needs and causes and are able to live an amazing life, too! Your blog is excellent so keep up the good work!!

        Sara Ann

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