When he took disability leave at the end of 2013 we thought he’d never work again.
At that time, he was taking 6-8 hydromorphone painkillers a day, as well as a high dose of Methotrexate by injection weekly.
He had developed severe and disabling nausea that no one could diagnose.
Now, the pain and nausea are manageable and he is medication-free, except for a few Tylenol Arthritis a week.
That sounds dramatic, and it is, but there were many times during the past 28 months when his health didn’t seem to be improving at all. And times when it was definitely getting worse rather than better.
But all of his autoimmune symptoms have gradually improved, and he is now in better health than he has been in eight years.
Back to Work
We honestly weren’t sure how the back-to-work experiment would go.
When he initiated it, he was partially bluffing. Read More
Matthew and I started measuring because we didn’t know what else to do.
We didn’t know we were measuring his recovery, because his health hadn’t started to improve yet.
Research and evaluation are part of my trade, and Matthew has a background in Continuous Quality Improvement, so when we’re in doubt: we measure!
And we were in a lot of doubt.
Why Measure Health?
Measurement can seem superfluous when you are really close to your experience.
Especially if the numbers don’t change from day to day.
Or if they swing around wildly for no obvious reason.
But if you stick with it, measurement can be incredibly useful as a way to discern trends and track progress over time. In fact, measurement can be a way to begin the process of recovery.Read More
Because you wouldn’t look like a human, but a mass of microorganisms organized in a human shape, surrounded by cloud of microbes that would swirl every time you moved.
Or scratched yourself.
So pretty~!
We know that the microorganisms that live in our gut are critical for our health.
Like the microbes in our gut, the microflora that live on our skin defend their habitat for their own survival, and depending on whether the resident communities of microbes are ‘commensals’ (our allies) or pathogens, these residents either offer us protection or cause us harm. Read More
“I don’t think you realize that Matthew has a debilitating, life-long, chronic illness that he will never recover from. There is every reason to expect he will become increasingly disabled. There is nothing you can do to change that. There is no cure.”
He thought we were in denial.
He was totally right.
We were very, very deep in denial.
But we thought of it as being optimistic~.
We still thought we could find a pill that would fix him.
And that when he had a good day, it meant he was getting better.
But the doctor was also totally wrong.
Because there were things we could do.
The Stockdale Paradox
Jim Collins describes the Stockdale Paradox in his book Good to Great.
It was the strategy used by Jim Stockdale when he was a prisoner of war in Vietnam from 1965-1973.
Stockdale survived, psychologically & literally, because of two things:
He never lost faith that he would make it; and
He was simultaneously fully aware of the precarious nature of his situation.
Jim Stockdale’s homecoming after 8 years as a POW
As Stockdale said years later, “You must never confuse faith that you will prevail in the end–which you can never afford to lose–with the discipline to confront the most brutal facts of your current reality, whatever they might be.”
According to Stockdale, it was the optimists that didn’t make it home.
It turns out that the two principles of the Stockdale Paradox (as Collins dubbed it): faith & disciplined awareness of the facts, are exactly what have been required to overcome a serious chronic illness, too.
1. Confront the Facts
Matthew’s doctor was right: we were in denial.
In Stockdale’s words, we needed to “confront the most brutal facts of our current reality”.
We were not going to find a pill that would make Matthew’s illness go away. We needed to accept that he would suffer enormously. We all would.
And the future we had envisioned for our family was never going to happen.
We confronted and accepted those facts as Matthew’s health declined. Until finally he was in bed 18-20 hours a day & hardly able to function at all.
2. Have Faith
The doctor was also wrong: there were things we could do.
Despite accepting the facts, we made a commitment from the beginning that we would never stop trying to reverse his illness.
And we never did.
Most of the things we tried didn’t work.
Some things made him worse.
Occasionally, we found something that helped. So we kept doing that.
While continuing to try other things. Most of which didn’t work. Or made him worse.
Repeat. For years.
Having unwavering faith for years, when there is little to reinforce it, is challenging. But sometimes faith is all you have, and that is so much better than nothing.
3. Keep Confronting the Facts
We had accepted the fact that Matthew had a serious chronic illness that he would be managing for the rest of his life. Once a body is in autoimmune response, it will always have that tendency.
But, because we had faith that we could reverse his illness, we needed to begin to find and confront other facts (no matter how outlandish they seemed or how inconvenient they were) that were going to help him to manage his autoimmune condition.
Some of those facts were not easy to integrate:
That he needed to give up virtually all of the foods he loved (and relied on for comfort).
That he had to take stress management very seriously.
That his medications were causing significant harm and had to be reduced & eliminated.
Coffee. Had to go.
That he had an electromagnetic sensitivity. Even though most doctors don’t believe such a thing exists. And that to improve, he had to move out of the city. Necessitating two residences (because I had a job & teenagers in town), a lot of time apart, and a lot of debt.
Caffeine. Gone altogether.
Faith & Discipline
So, through attending to facts (big & small) and making the necessary adjustments based on n=1 data, ‘faith & disciplined awareness’ gradually became ‘faith & discipline’.
This is part 2 of a 2-part post (but it can also be read alone). Find part 1 here.
Here’s the dramatic beginning:
After 16 months on the Autoimmune Protocol (AIP), we were back where we’d been at the worst of Matthew’s autoimmune crisis: he was almost completely incapacitated & unable to care for himself.
Despite that, the AIP is working.
All Matthew’s autoimmune symptoms are reversing, and he is still experiencing results that are consistent with my 12 month update, even though he’s just come through the winter & spring, which are his worst times of year.
Here’s a recap of that 12-month progress:
Even though he hasn’t experienced any improvements in autoimmune symptoms since December, the fact that he experienced only a slight increase in those symptoms during the winter is significant (& counts as improvement).
But the nausea, which started in October of 2013, has not responded to the AIP. Even a low-FODMAP AIP.
In fact, after an initial reprieve during the first months of removing FODMAPs, Matthew’s nausea got steadily worse. But that wasn’t easy to discern at first, due to the other symptomatic improvements Matthew was experiencing.
For fun, let’s look at it on a graph:
Decoupling the nausea from Matthew’s other symptoms & tracking it over time helped us conclude that his nausea is not autoimmune in origin. We know that healing from a complex (wicked) health condition is non-linear, so it took time before we felt confident about this hypothesis.
We now attribute the nausea to SIBO, which means it is likely a symptom of the same overall gut dysbiosis that contributed to his autoimmune crisis in the first place.
In other words, his nausea & autoimmune conditions are both symptoms of a common problem. As is his long-term issues with Irritable Bowel Syndrome.
It’s all connected!
Now we’re getting somewhere…
Method
Using the language of the scientific method, we’re treating the first 16 months of the AIP as one experiment: let’s call it experiment A (A for Autoimmune).
To complete this particular cycle of experiment A, I’m reporting our findings (this post is the report~).
Based on our findings, we’re going to continue with experiment A in the long term. And based on our new hypothesis, we’re also starting experiment B (B for Bowel). (I just totally made that up).
We’ve decided to give experiment B an 8 week trial. Then we’ll analyze, do research, and hypothesize again.
Experiment B: a New Protocol
As I mentioned in my last post, 5 weeks ago Matthew started a new protocol. It’s the most restrictive one yet.
Although the elimination phase of Agalee’s protocol makes a low-FODMAP AIP look like a 24/7 birthday party, Matthew’s nausea was so extreme when he started that he was hardly eating. So the new restrictions didn’t phase him.
The Gut & Psychology Syndrome (GAPS) Diet, which, itself is an adaptation of the of the SCD.
Both the SCD & GAPS, interestingly, were created by women who were desperate to help their children with debilitating health conditions when the medical system couldn’t.
As is Aglaée, who developed her protocol based on her own experience with SIBO. And Dr. Allison Siebecker, a leading SIBO expert, who has devoted her career to this work as a result of her own attempts to heal from this condition.
So, we’re in good company.
Aglaée‘s protocol is entirely adaptable to the AIP (the only thing you need to remove is green beans).
I highly recommend her book to anyone who needs radical gastrointestinal healing. Which, on reflection, might include most people.
But here’s an interesting question:
Why did a low-FODMAP AIP improve Matthew’s nausea at first, but lose it’s effectiveness over time?
16 of the 17 months Matthew has been on the AIP have been low-FODMAP (he’s technically still on a low-FODMAP version of the AIP, just an extremely restricted version of it).
At first, there was an improvement in his nausea without the FODMAPs (you can see that in my jolly graph, above). This initial progress was aligned with the other symptomatic improvements he was experiencing, so seemed to be linked.
But a low-FODMAP AIP, though better than a regular AIP for people (like Matthew) who have inappropriate bacteria in their small intestine, still nurtured those bacteria and helped them flourish in the long-run.
The low-FODMAP AIP made Matthew feel better at first because he was no longer eating foods that were inappropriately fermenting in his small intestine. But the bacteria that were loitering there were still being nurtured by many of the carbohydrates he was eating (Especially after his 1-year AIP-iversary, when he started investigating AIP baking).
“The FODMAP diet is not specifically designed for SIBO and therefore does not eliminate polysaccharide and disaccharide sources… Eliminating these poly- and disaccharides is essential in SIBO. In SIBO, well-absorbed carbohydrates, foods that usually go to feed the host, feed instead the increased small intestine bacteria, creating symptoms and fueling more bacterial growth. Any diet will need to be individualized by trial and error over time. Providing a food chart or particular diet prescription merely offers a place to start.”
Results
As I mentioned in my last post, after just 9 days on this new protocol, Matthew’s nausea was reduced from a range of 7-10 to a range of 4-6. And stayed there.
What’s the difference between 7-10 and 4-6?
He can cook. For himself. And for me.
He can think.
He can plan.
He can exercise.
He can take an interest in life.
He has an improved relationship with food.
I am no longer chronically stressed. Worried about him, the future, and how I’m going to run our life by myself forever.
We have more sex.
We have more hope.
Hope
Hope is a dangerous thing. We know because we’ve had it before.
We’re trying not to have too much.
Especially because it seems as though there are circumstances in which SIBO can be untreatable, one of them being historic daily use of opiate painkillers. Something Matthew has done over the years in an attempt to manage the chronic pain associated with psoriatic arthritis.
Which is ironic, because it is quite possible that SIBO caused the intestinal permeability that led to the development of psoriatic arthritis that necessitated the daily use of the opiates.
The Autoimmune Protocol is founded on evidence that gut health is the key to reversing systemic inflammation and autoimmune symptoms.
According to recent research, it turns out that particular microbiome ‘signatures’ in the human gut can be linked to specific autoimmune conditions.
Stick with me: this stuff is important. And medically, it’s paradigm-altering.
What follows are selected quotes from a paper that was published in the January 2015 issue of Arthitis & Rheumatology, called Decreased Bacterial Diversity Characterizes the Altered Gut Microbiota in Patients with Psoriatic Arthritis, Resembling Dysbiosis in Inflammatory Bowel Disease by Dr Jose Scher and 13 other researchers.
This study adds additional scientific research to the mounting anecdotal evidence that Autoimmune Protocol pioneers have been amassing, regarding the connection between gut health and autoimmune. It begins to explore the unique constellations of intestinal bacteria that are associated with different forms of autoimmune disease.
This particular paper focuses on Psoriatic Arthritis (PsA) and Psoriasis, two of the interrelated autoimmune conditions that Matthew lives with.
In our ongoing quest to hack Matthew’s health, we constantly seek new information to inform, confirm or disconfirm our observations, hunches & hypotheses. This paper confirms everything we’ve learned through our biohacking to date. It has raised some new research questions for us & could potentially revolutionize standard medical practice for treating autoimmune.
The Findings
In summary:
People with Psoriatic Arthritis (PsA) have less diversity in the population of organisms in their gut than healthy people, and they lack particular types of of bacteria: specifically, Akkermansia and Ruminococcus.
People with psoriasis also have reduced diversity in their intestinal microbiome, and the reduction follows a pattern, with maximum variety in healthy people, reduced flora in people with psoriasis alone, and even further reduced diversity in people who, like Matthew, have psoriasis and Psoriatic Arthritis.
In the words of Dr Scher et al:
“In this study…we have shown, for the first time, that patients with PsA and patients with psoriasis of the skin have decreased diversity in their gut microbiota, mainly due to the lower relative abundance of several taxa.”
Internal constellations~
In addition to less diverse intestinal flora, researchers have identified a “common gut microbiota signature in patients with psoriasis and patients with PsA.”
“Our studies constitute a novel and comprehensive approach to investigate the symbiotic relationship between gut microbiota and PsA. We have identified several organisms that are virtually absent from PsA patients (i.e., Akkermansia and Ruminococcus).”
“The gut microbiota profile in patients with psoriasis appears to be intermediate, between that of PsA patients and that of healthy subjects, suggesting that there exists a possible continuum in disappearing intestinal taxa through the natural history of the disease.”
A “key question left unanswered by our study is whether patients with current psoriasis of the skin alone will lose certain potentially protective taxa, such as Akkermansia and Ruminococcus, at the time of, or prior to, transition into PsA. This is crucial because, although it is established that 25-30% of patients with psoriasis will develop arthritis over time, there is currently no possible way to predict progression.”
Similar research has previously focused on the constellations of gut flora in people with rheumatoid arthritis. A comparable lack of diversity was found, but with a different signature. “We have previously utilized this same approach to examine the intestinal microbiome in treatment-naive patients with new-onset rheumatoid arthritis (RA) and found that expansion of Prevotella copri was associated with enhanced susceptibility to as yet untreated human RA. This is contrast with our present findings in PsA patients and suggests that there is a distinctive pattern associated with each condition.”
Potential Treatment & Further Study
“These investigations may ultimately lead to novel diagnostic tests and interventions, in the form of probiotics, prebiotics, specific microbiome-derived metabolites or molecular targets, and even bacterial transplant techniques.”
“The role of the gut microbiome in the continuum of psoriasis-PsA parthenogenesis and the associated immune response merits further study.”
We agree~!
What if replacing the missing Akkermansia and Ruminococcus could assist in reversing Psoriatic Arthritis? This would likely not be as simple as repopulating the gut with these bacteria. Favorable gut conditions would probably need to be cultivated to allow these extinct organisms to thrive. And re-population might need to be done through ‘bacterial transplant techniques’ including, perhaps, fecal transplants.
We think these findings could revolutionize medical treatment for autoimmune arthritis (and autoimmune conditions generally).
Find the full Decreased Bacterial Diversity Characterizes the Altered Gut Microbiota in Patients with Psoriatic Arthritis paper here.
So I have lots of anecdotal evidence on the effects of chronic marijuana smoking. I came to the conclusion (at a young age) that marijuana is often part of the problem, rather than a cure-all solution.
But there is mounting evidence that Cannabinoids deserve our serious attention, including a survey of research presented in the paper The Endocannabinoid System, Cannabinoids, and Pain by Perry G. Fine and Mark J. Rosenfeld, who both sit on the Board of Directors for the American Academy of Pain.
I am interested in pain because my husband, Matthew, has spent years trying to manage severe chronic pain associated with Psoriatic Arthritis.
Chronic pain has been like an abusive 3rd spouse in our marriage & a destructive presence in our family life.
Chart 1 from The Endocannabinoid System, Cannabinoids, and Pain
We can vouch for the effects depicted in the two charts from Fine & Rosenfeld’s paper that I’ve included in this summary. They illustrate that chronic pain effectively wrecks lives.
Matthew’s pain is substantially reduced after 12+ months on the Autoimmune Protocol, without the use of Cannabinoids, but pain-management is still part of his daily reality.
Cannabinoids, in the form of ‘CBD’, has been prescribed by his Functional Medicine Doctor for pain, and also as an experimental treatment for his extreme, mysterious nausea.
Matthew hasn’t tried CBD yet. He is currently trying Folinic Acid for nausea, to see if it can assist in repair of his gastrointestinal mucosa cells, after long-term use of Methotrexate that was prescribed for Psoriatic Arthritis.
We’ve learned that he needs to try one thing at a time, and often requires recovery time in between, if a particular experiment doesn’t go well.
CBD is his next experiment, after Folinic Acid, and this paper is part of my research on the subject. I thought it was worth sharing.
We keep trying things. Sometimes we find something that works. If it’s not Folinic Acid or CBD, we’ll try something else.
The following are excerpts from Fine and Rosenfeld’s paper The Endocannabinoid System, Cannabinoids, and Pain.
The Endocannabinoid System, Cannabinoids & Pain
Starting at the beginning:
What Is Pain?
“Pain is an unpleasant, commonly occurring, and universal human experience; it is also a very complex phenomenon. The experience of pain and the resultant emotional state depends as much or perhaps more on the contextual circumstances (how, when, where, and why) of the pain-inciting event as the intensity of the noxious stimulus. And a seemingly similar pain-producing event may be experienced (and communicated) quite differently from person to person, situation to situation, and among various cultures” (p. 2).
Chart 2 from The Endocannabinoid System, Cannabinoids, and Pain
“Fortunately, most occurrences of pain are self-limited, resolving quickly with discontinuation of the noxious stimulus or in tandem with tissue healing or resolution of the insult to somatic or visceral structures. But pain that continues relentlessly… serves little purpose. In contrast to acute pain, unresolved pain leads to subliminal and conscious reflex responses that are often maladaptive. It imparts a tremendous burden on the pain sufferer’s health, social interactions, occupational performance, emotional state, and finances. In turn, chronic pain incurs a significant direct and indirect financial toll on society” (p. 2).
“The prevalence of persistent, debilitating pain is increasing” in the population (p. 2).
“Currently available analgesic medications and pain-modulating procedures are severely limited by combinations of low efficacy, excessive toxicity/risk/safety concerns, insufficient access to care, or unbearable cost” (p. 3).
How effective are currently-available pharmaceutical pain-management strategies? “In randomized clinical trials of analgesics for neuropathic pain, no more than half of patients experience clinically meaningful pain relief from pharmacotherapy” (p. 3).
Cannabinoids
“Cannabinoid refers to a pharmacological class of about 60 naturally occurring compounds (phytocannabinoids) found in plants of the genus Cannabis (i.e. marijuana and hemp)” (p. 4).
“Evidence continues to accumulate suggesting that cannabinoids can impact normal inhibitory pathways and pathophysiological processes influencing nociception in humans… Clinical trials lasting from days to months, involving more than 1,000 patients, have shown efficacy in different categories of chronic pain conditions” (p. 7).
“The phytocannabinoids have efficacy in the treatment of various chronic pain conditions with greatest promise as a therapeutic adjunct in treating peripheral and central neuropathic pain and inflammation-mediated chronic pain” (p. 11).
The Endocannabinoid System & Inflammation
“It appears that the endocannabinoid system [in the body] is intimately involved in tissue healing in the face of inflammatory conditions, correlating clinically with prevention and treatment of inflammation-mediated pain” (p. 6).
The cannabinoid system is described as “an ancient lipid signaling network which in mammals modulates neuronal functions, inflammatory processes, and is involved in the etiology of certain human lifestyle diseases… The system is able to downregulate stress-related signals that lead to chronic inflammation and certain types of pain, but it is also involved in causing inflammation-associated symptoms” (p. 5).
In short, “the endocannabinoid system is involved in a host of homeostatic and physiologic functions, including modulation of pain and inflammation” (p. 1).
CBD vs THC
Marijuana is smoked. It’s the tetrahydrocannabinol (THC) that gets you stoned. Cannabidiol (CBD) is a non-psychotropic (doesn’t get you stoned) component of Cannibis: “Cannabidiol is a major constituent of Cannabis. It has virtually no psychoactivity compared against THC” (p. 9).
Negative attitudes toward marijuana are impacting the adoption of Cannabinoids: “The health hazards of smoking coupled with the cognitive-behavioral effects of Cannabis have created political and regulatory obstacles worldwide, with regard to evaluating cannabinoids as medicines and mainstream health care professionals’ acceptance of Cannabis as a legitimate therapeutic agent” (p. 5). I understand these negative attitudes, as I’ve harboured some of them myself!
We started our long-term Autoimmune Protocol one year ago today.
One year ago, Matthew was almost debilitated by a constellation of chronic health issues. Despite all the conventional, alternative & downright weird things we’d tried in our attempts to reverse his autoimmune conditions over the previous five years.
12 months later, we’re elated & discouraged about the progress he’s made.
Reversing Autoimmune
There’s no question Matthew is reversing his autoimmune condition on the AIP. Reversing, slowly. Not curing.
All the experts say the once a body is in autoimmune response, it’ll always be inclined that way.
You can’t cure autoimmune.
But you can reverse it’s effects. Slowly. Through the nutritional & lifestyle hacks known collectively as the Autoimmune Protocol.
Here’s a brief summary of Matthew’s progress after 12-months on the AIP:
And me?
I’ve been on the AIP for 12 months, too. Most of that time a ketogenic version. As a person without an autoimmune condition, I’m loving the results, which I’ve documented in the posts biohacking for peak experience & biohacking for career leverage.
A false start & a rough beginning
We’ve tried a bunch of nutritional protocols in our attempts to heal. From the specific carbohydrate diet to raw veganism, they all left Matthew somewhere on the continuum between worse & unchanged.
Our first Autoimmune Protocol (AIP) was for 30 days in the summer of 2013.
We thought 30 days might do it!
When it didn’t, Matthew was pretty dispirited. And fairly hostile about the AIP. I’d been paleo for a couple of years and had experienced the alleviation of all of my symptoms, so I continued to be paleo after our first AIP experiment.
But Matthew insisted that regular paleo made him worse, so he reverted to all his SAD-old ways.
Turns out he was right. A regular paleo diet is insufficient and inflammatory for many people with autoimmune conditions.
A few months after our first AIP, we noticed that Matthew’s psoriasis symptoms had improved. We traced the remission back to our 30-day AIP.
At the same time, his pain symptoms were getting steadily worse, along with his dependence on narcotic painkillers, which interfered with his ability to function & interact with people.
Then, in October of 2013, he developed inexplicable, debilitating nausea.
After further research, we decided to try a long-term AIP. Or, in truth, I did the research and I decided.
Matthew grudgingly agreed. He was severely compromised at that time & would never have been able to do the protocol, or the research required to find out about it, on his own.
Now he can.
Though this was only a year & a bit ago, it was before Dr Sarah Ballantyne’s book The Paleo Approach was published.
At that time the primary sources of information on the AIP came from the experimental blogs of AIP pioneers who were treating their own autoimmune diseases through nutrition & lifestyle. This movement is still being led by people who are taking their health into their own hands, and taking the time to blog about it.
low-FODMAP & ketogenic variations
It was only a couple of weeks into our long-term AIP, during which time I continued to research obsessively, that Matthew decided to try a low-FODMAP variation. He’s experimented with going off of it during the last year & always ends up back on it. He does better.
Last Spring I decided to experiment with an AIP-compliant version of the Wahls Paleo Plus, the ketogenic version of the Wahls Protocol. I liked it so much I decided to stick with a ketogenic AIP and have continued to experiment with different levels of carbohydrates.
What next?
A long time ago we resolved that we’re just going to keep trying.
Most of the things we’ve tried haven’t worked. Some have made Matthew worse. Occasionally, we have a breakthrough.
The AIP is a breakthrough.
We’re going to stick with it & keep trying new nutritional & lifestyle hacks in our quest for health and well-being.
Today I’ll put the two together & delve into our experiences using genomic analysis as a diagnostic tool.
Genomic Analysis
Genomic analysis is simple (at least on our end): order a kit online from 23andMe (That’s a Canadian link; Google 23andMe for other countries.)
They send you the kit, you follow their instructions, including sending them a sample of your saliva.
If you live in Canada, your 23andMe report will come with health data. People from the United States have to send their result to LiveWello to get a health report.
If you live in the States, you have to take this additional step because the American Food & Drug Administration (FDA) has banned access to health information through 23andMe. According to the FDA, “patients relying on such tests may begin to self-manage their treatment… or even abandon certain therapies depending on the outcome of the assessment.”
Yes, indeed, they might.
Let me give you an example.
Matthew is the guy I love & he has an autoimmune condition called Psoriatic Arthritis for which he was prescribed Methotrexate for more than a decade.
Before we get into genomic analysis, let’s just take a moment to check out a list of known Methotrexate side effects:
I find the side-effect called ‘Toxic Megacolon’ to be particularly evocative~.
Before we started the Autoimmune Protocol (AIP) in 2013, Matthew had been taking Methotrexate since 2002, during which time his health deteriorated until he was hardly able to function at all. Because Methotrexate is an ‘antifolate’, he was also prescribed a daily high dose of folic acid during this time.
Both the Methotrexate & the folic acid always made him feel awful.
Enter the MTHFR Gene Mutation~
Turns out Matthew has the MTHFR gene mutation.
A quick overview: the MTHFR gene is tasked with carrying instructions for making methylenetetrahydrofolate reductase, an enzyme which assists in processing amino acids, which are the building blocks of proteins. Methylenetetrahydrofolate reductase is critical for a chemical reaction that I freely admit I do not understand, other than that it involves folic acid (also known as vitamin B-9).
You can find more information about melylation biochemistry here.
Turns out Matthew is heterozygous for the MTHFR C677T gene mutation (He is also homozygous for the MTHFS gene mutation, but that’s another story).
‘Heterozygous’ means the mutation was inherited from one parent; ‘homozygous’ means it was inherited from both parents, and is usually more problematic. Though it is important to note that it is the interactions between gene mutations & the environment that ultimately impact our health, not the mutations themselves.
Having a MTHFR mutation means Matthew (& others like him) cannot readily process folic acid. And that they should not be taking antifolate drugs.
In fact, the primary recommendations for people with MTHFR mutuations are:
Severely limit the ingestion of folic acid in fortified foods, drugs & supplements;
Avoid all folic acid blocking drugs, like birth control & Methotrexate.
In other words, avoid precisely the two things that specialists have been prescribing to him for over a decade.
Trepanning: we don’t do that anymore either
I know that none of those doctors wished him any specific harm. The information available to us through genomic analysis is relatively new, and we simply didn’t know this stuff way back in 2002.
But we do now.
So now that we do, let’s review the FDA’s concerns about access to genomic health data:
“Patients relying on such tests may begin to self-manage their treatment… or even abandon certain therapies depending on the outcome of the assessment.”
Yes, they just might.
Matthew’s Mystery Symptom
One of Matthew’s mysterious symptoms that is not lifting, even after 10 months on the Autoimmune Protocol, is severe & disabling nausea.
He is still on long-term disability leave from work, which is causing significant financial stress for our family. His autoimmune symptoms are improving, but the debilitating nausea is not.
Interestingly, we have learned that other people with Psoriatic Arthritis who have been on Methotrexate in the long-term are also suffering from severe, unexplained & protracted nausea.
I wonder if these people also have similar gene mutations & if prolonged toxic exposure to Methotrexate & folic acid supplements might be the cause?
Biohacking Health
This blog is devoted to biohacking autoimmune. And biohacking peak experience.
Biohacking is all about taking personal responsibility for health & well-being through self-experimentation.
To biohack, you need data. Genomic analysis provides potentially powerful data.
Once you have data, you decide what to do with it.
MTHFR is only one possible gene that creates a predisposition to health issues when mutated. Others may deserve investigation as well, depending on the state of your health & your genome. New information is emerging all the time.
But you don’t have to do it alone.
Most medical professionals are lagging when it comes to this stuff, as evidenced by the mini experiment Matthew & I ran here in British Columbia last summer, but Functional Medicine uses genomic analysis as a primary diagnostic tool.
Find another example of the use of genomic analysis to diagnose & treat perplexing autoimmune symptoms on the Paleo PI.
FYI, the LiveWello Gene App is easier to navigate than the 23andMe health reports & also provides more detailed information, so you may wish to pay $20(US) for it, even if you do live in Canada & are able to access health data through 23andMe.
One of my favorites quotes is from Danielle LaPorte: “Gratitude & self-expression are a sacred feedback loop“.
This blog has been my opportunity for self expression & I want to complete the sacred feedback loop by sharing my gratitude on its very first birthday.
I’m grateful to everyone who has read petra8paleo over the past year.
I’m grateful for my children, who I love with all my heart.
I’m grateful for my health. For the healing. For my husband, Matthew, and the future we are starting to reimagine that we have together.
And to everyone else who has gone before us, in pioneering the Autoimmune Protocol.
Matthew returned to work this week.
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