Biohacking Update: 28 months on the AIP

28 months on the Autoimune ProtocolMatthew returned to work this week.

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

Why Measure your Recovery?

Why MeasureMatthew 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

Biohacking Update: 3 months on a yeast & biofilm busting protocol (& 25 months on the AIP)

BiohackingIn August, Matthew started a three-month protocol designed to tackle biofilm-protected yeast colonies his gut.

Five months later we are feeling optimistic.

The Back Story

The symptom: debilitating nausea with no apparent cause.

The nausea first occurred in October 2013 after an autumn feast of chanterelle mushrooms I had picked.

It happened again when we ate chanterelles a second time that month.

And then just kept recurring. And getting worse. Until it gradually became Matthew’s most problematic symptom.

In fact, it was the severe nausea that finally prompted Matthew to take the leap and commit to the Autoimmune Protocol (AIP).

The AIP

After a few test runs, we both committed to the AIP long-term in December of 2013. Almost immediately, Matthew moved to an even more restrictive low-FODMAP version of the protocol to reduce his nausea.

The AIP:

Before & After
Before & After
  • Improved all of Matthew’s other symptoms, including arthritis pain, psoriasis and severe brain fog;
  • Enabled him to get off Methotrexate, a toxic medication that he had been taking for 10 years that caused its own host of nasty side effects;
  • Helped him significantly reduce prescription and non-prescription pain medication; and
  • Caused me to feel younger and more vital than I had in my adult life.

But Matthew’s nausea kept getting worse. Read More

Biohacking Update (& a New Hypothesis)

Biohacking updateMatthew has been on the Autoimmune Protocol (AIP) for 18 months.

17 of those have been low-FODMAP.

For the last 2 months, he’s been doing the most extreme low-FODMAP AIP variation yet: a gut-healing protocol outlined by Aglaée Jacob in her book Digestive health with Real Food.

The only carbohydrates he’s been eating for the past 9 weeks are carrots and spinach. And he drinks gallons of bone broth~.

The Results

This is the reporting part of the Scientific Method.

  • Nausea: As I mentioned in my post Dietary Treatment for SIBO, after 9 days on this new Protocol, Matthew’s unexplained and debilitating nausea went from a 7-10 on a scale of 0-10 to a 4-6. And stayed there. Two months later, his nausea is still in the 4-6 range. This reduction has enabled him to participate in life, including cooking for himself (and me), engaging in moderate exercise, and doing things around the house. But the nausea has plateaued at the 4-6 level and that is barely tolerable much of the time.
  • Brain Fog: Over the past 2 months his brain fog lifted further. He’s winning at scrabble again. For the first time in years.

A New Hypothesis

Our Functional Medicine Doctor, Dr Cline, was as perplexed as everyone else about Matthew but (unlike everyone else) he didn’t give up.

Dr Kline talked to several colleagues and has a new hypothesis: yeast colonies protected by biofilms in the gut.

Biofilms

Biofilms are communities of microscopic organisms, such as bacteria and yeast, that produce their own protective matrix.

Organisms inside a biofilm are highly resistant to eradication attempts and, it seems, are also capable of complex, coordinated behaviour like quorum sensing.

Biofilms
Image from: https://www.biofilm.montana.edu/resources/images/biofilm-control-strategies/microbial-biofilms-sticking-together-success.html

The hypothesis that Matthew is colonized by biofilm-protected yeast colonies in his gut comes from a re-analysis of the results of a comprehensive stool analysis that Dr Kline ordered last year.

As Matthew had been on a low-FODMAP AIP for quite some time when that test was conducted, his results were better than any Dr Kline had ever seen.

Apparently, he should have been feeling great!

But he wasn’t.

The trace amounts of yeast in each of the three tests didn’t seem consequential at the time. But the specialist Dr Kline consulted with, Dr Tom O’Bryan, thought they were. Quite.

Vratislav Šťovíček, Libuše Váchová and Zdena Palková explain: “Pathogenic yeasts can colonise various surfaces within the human body, including host tissues… and form biofilms that resist otherwise effective drug therapy. Biofilms are thus very difficult to eliminate and serve as a source of serious systemic infections.”

Apparently yeast can grow roots, called hypha, which can puncture the intestinal wall and thereby create intestinal permeability (leaky gut). So even though Matthew has been on increasingly restrictive gut healing protocol for a year & a half, if the yeast is armored inside biofilms and putting down roots, his gut is still leaky.

It makes sense~.

A New Protocol

Dr O’Bryan has recommended a 3-month protocol designed to attack the biofilms and eradicate yeast colonization, with supplemental colostrum for gut-healing.

Biohacking modes: Reporting, Current biohacking modes: Reporting, hypothesizing & designing a new experiment~
Current biohacking modes: reporting, hypothesizing & designing a new experiment~

He has also recommended an ‘Intestinal Antigenic Permeability Screen’ from Cyrex Laboratories to measure Matthew’s gut permeability before and after the protocol. That will enable us to get a baseline and then measure any improvement.

Dr Kline has suggested that we may want to consider a fecal microbiota transplant at the Taymount Clinic in England after that, to repopulate Matthew’s micobiome. Maybe even as soon as this winter.

We might have sell our house to finance that, but hey~.

If I want to go on losing at scrabble for the rest of my life, that might just be what we have to do…

Biohacking Update: 17 months on the Autoimmune Protocol

Biohacking Autoimmune_CoverThis 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:

symptoms_12 months

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:

Matthew's Symptoms until May 2015

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

Scientific MethodUsing 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.

We adapted this new protocol from the one recommended by ‘s Jacobs in her book Digestive Health with Real Food.

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.

 adapted her protocol from:

  1. The Specific Carbohydrate Diet (SCD), which was one of the first ‘weird diets in the quest for health‘ we ever tried, way back in 2006; &
  2. 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.

N=1 biohackers, for sure~!

As is . 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.

‘s protocol is entirely adaptable to the AIP (the only thing you need to remove is green beans).

I highly recommend book to anyone who needs radical gastrointestinal healing. Which, on reflection, might include most people.

But here’s an interesting question:

Biohacking update_17monthsWhy 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).

SIBO experts Allison Siebecker & Steven Sandberg-Lewis describe this in their paper The Finer Points of Diagnosis, Test Interpretation, and Treatment:

SIBO Pathophysiology
Image found here: http://www.townsendletter.com/FebMarch2013/ibs0213.html

“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.

Co-hackers

Other AIPers are also hacking SIBO, including Rory Linehan, an AIP blogger who is treating SIBO with antibiotics.

You can read Rory’s interview with Angie Alt, another AIP blogger who has successfully treated SIBO with anitbiotics, about her treatment here.

And find Angie’s excellent ‘SIBO Saga’ series of posts here.

 

Dietary treatment for SIBO (low-FODMAP isn’t enough~)

MatthewMysterious debilitating undiagnosable nausea.

That keeps getting worse.

Despite more than 16 months on the Autoimmune Protocol (AIP). That’s what was happening to Matthew. Even though 15 of those months were low-FODMAP.

The AIP is working~

All of Matthew’s autoimmune symptoms are reversing on the AIP.

But the nausea has not been responding. It’s been worsening. Slowly. For a year.

Until this April when he was hardly eating & was almost completely incapacitated.

We determined the nausea is NOT autoimmune & will require a different treatment. So we set out to hack that.

All the specialists, including his functional medicine doctor, have poked, prodded, tested and hypothesized & come up with nothing. Then shrugged & left us alone with a deteriorating, undiagnosed, unresponsive health issue that has caused Matthew to be unable to work since December 2013.

We’ve suspected Small Intestinal Bacterial Overgrowth (SIBO) for a long time.

Despite the fact that Matthew’s Gastroenterologist says SIBO doesn’t exist.

Small Intestinal Bacterial Overgrowth (SIBO)

SIBO is a condition in which beneficial bacteria become displaced in the digestive tract.

They migrate from the colon, where they are supposed to be, into the small intestine. This results in fermentation of carbohydrates in a part of the gut where fermentation is not supposed to occur, causing gas, abdominal pain, constipation or diarrhea, heartburn &/or nausea. Symptoms range from mild to debilitating.

SIBO causes primary symptoms, but it also contributes to intestinal permeability (‘leaky gut’) which is implicated in autoimmune & other chronic health conditions.

Treatment

Treatment options include specific pharmaceutical antibiotics (such as Rifaximin), herbal antibiotics or a dietary protocol that makes a low-FODMAP AIP look like a cakewalk (at least at first).

Experts seem to disagree about whether it is possible to treat SIBO through diet alone.

Registered dietician in her book Digestive Health with Real Food, indicates that diet is a viable options for treatment of SIBO. Angie Alt of Autoimmune Paleo suggests that SIBO cannot be treated with diet alone. She references Dr. Alison Siebecker’s research to support this view.

Image found here: http://www.townsendletter.com/FebMarch2013/ibs0213.html
Image found here: http://www.townsendletter.com/FebMarch2013/ibs0213.html

As SIBO experts Allison Siebecker & Steven Sandberg-Lewis explain, “diet alone has proven successful for infants and children, but for adults one or more of the other three treatment options are often needed to reduce bacteria quickly, particularly in cases in which diet needs to be very restricted to obtain symptomatic relief.

After combing thorough the research it remains unclear to me whether it is truly impossible to cure SIBO through diet, or if maintaining the required protocol for a sufficient length of time is considered too difficult, or too risky from a nutritional standpoint.

We have learned that Matthew’s diet definitely needs to be very restricted to obtain symptomatic relief, but nevertheless he is taking a dietary approach.

Partly because he tried to get a prescription for antibiotics to treat SIBO but was turned down by two different doctors, who cited their own ignorance about SIBO & the fact that he was in such rough shape. Neither was wiling to risk making him worse.

According to Angie Alt, it can be extremely challenging to get a prescription for antibiotics to treat SIBO here in Canada.

So, as of a month ago, Matthew is following the elimination diet outlined by in Digestive Health with Real Food. Lots of bone broth (no surprise there!), no caffeine & the only carbohydrates he is eating currently are carrots & spinach.

This is meant to be a short-term elimination diet, until symptoms have been ‘mostly absent’ for at least five consecutive days. According to

We were pretty confident that Matthew’s gut was the intransigent type, so from the beginning we figured he’d give it an 8 week trial.

He is now 5 weeks in.

At the beginning he was almost completely disabled. Unable to care for himself.

Not only was he suffering excessively, I was drowning in stress. We were back where we’d been at the worst of his autoimmune crisis: I was caring for him; keeping the household running, including all the food prep & cooking that is required on the AIP; keeping up with a demanding career (currently our only option for income); parenting; and worrying constantly about our future.

That was our baseline.

The Results

Within 9 days on this new protocol his nausea had reduced from a 7-10 (on a scale of 0-10, in which ‘0’ is no nausea and ’10’ is completely incapacitated) to a 4-6.

Petra & Matthew 2 croppedOne month in, he is still in the 4-6 range. And as he says, the difference between  a 4 and a 6 is “at 6, I’m just tending to my immediate needs whereas when I’m a 4, I can be more thoughtful and proactive about life. Over 6 and I can’t really take care of much”.

As Matthew’s spouse, I can vouch for that.

This post is part 1 of a 2-part series. Find part 2 here.

Biohacking Autoimmune~

This Monday (May 25th) is the last chance to buy the Autoimmune Protocol Wellness bundle (& get my new e-book Biohacking Autoimmune DIY~).

Click here to view more details

Book_petra8paleo

The Endocannabinoid System, Cannabinoids, and Pain

cannabis_sativa_koehler_drawingI was raised by hippies.

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.

Image from The Endocannabinoid System, Cannabinoids, and Pain
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 Cannabinoidsbut 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).

Image from The Endocannabinoid System, Cannabinoids, and Pain
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!

Find the full paper here.

Find CBD here (this is the company recommended by our Functional Medicine Doctor).

As mentioned, Matthew hasn’t tried CBD yet.

As always, consult with your Health Practitioner before engaging in any new  therapy~.

Biohacking ~Genomic Analysis

GenomeRecently, I reblogged a post on the MTHFR gene mutation.

Then wrote about some of the fun that can be had with genomic analysis.

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:

MethotrexateI 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.

The methylation cycle. Image from http://neuroendoimmune.wordpress.com/
The methylation cycle. Image from: http://neuroendoimmune.wordpress.com/

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:

  1. Severely limit the ingestion of folic acid in fortified foods, drugs & supplements;
  2. 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
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.

I highly recommend finding a good Functional Medicine doctor for your biohacking team.

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.

 

The Electromagnetic Connection

Electricity 2It’s not easy to find the paper Electromagnetic Hypersensitivity and Implications for Metabolism, hidden away on page 799 of Advancing Medicine with Food & Nutrients (2nd edition).

Easier to find the man who co-wrote it.

Finally, an explanation (& validation) for our long-standing suspicion that one of Matthew’s issues is an electromagnetic sensitivity.

Picking up where Benjamin left off…

BenjaminTurns out, metal conducts electricity.

The wiring in your house.

And the metal in your body.

When infused with metals, our bodies can become conductors.

Our hypothesis

Matthew grew up playing in polluted creeks in Southwestern Ontario. Known pollutants from industries in the region include lead, mercury and nickel. From there, he moved on to automobile manufacturing, where he worked with powdered nickel, molybdenum, and cobalt. Then he switched to airplane manufacturing. He worked on some big ferries, too. The planes & ferries were all about aluminum, with some alloyed silicon, copper & manganese.

He’s riddled with metal, we figure.

We decided that he was electromagnetically sensitive years ago. Even though none of his doctors believed such a thing existed.

He was always better away from cities, out of cell phone range. He felt better when the power went out (I do, too).

We moved several times, kids, cats & all, trying to find a place in the city he could live. At one point (in one house) he was in bed 18-20 hours a day, unable to function. He improved somewhat when we moved again.

We noticed these patterns and then started to test our theory. The electromagnetic sensitivity hypothesis held up. 100% of the time.

Finally, we took radical action. Disrupted careers, community & all of our kids to move to a small island with minimal electromagnetic radiation, where Matthew was able to somewhat live

I say ‘we’.

I had teenagers to fledge & there is no highschool there. In reality, we became a family with 2 residences. But not in a fancy way. More like in a lots-of-credit-cards-perpetually-maxed-out way.

I live primarily in the city. Matthew lives primarily on the island. We travel back and forth.

All his symptoms return when he’s back in the city, so he has to limit his exposure. We are a 4-hour drive apart and miss each other like mad. But he’s been able to start rebuilding his life there. And one day the teenagers will be fledged and we can live together again.

When we first met Dr Cline, I was hesitant to mention our electromagnetic theory. I’ve receive so many patronizing looks from doctors. But condescension can’t kill you, so I shared our hypothesis.

“Yes.” he agreed. “In fact I co-wrote a paper about that.” He pulled a big blue book off the shelf, flipped to page 799 and handed it to me. I left that day with a copy of his paper & I’m going to give you the quick version here.

ElectricityElectromagnetic Hypersensitivity and Implications for Metabolism

A brief summary of a paper by John C. Cline and Beth Ellen DiLuglio

Cline & DiLuglio explain that “The human body can be visualized as an electromagnetic semiconductor matrix that allows for instantaneous communication among all cells within the system.”

As electromagnetic semiconductor matrices, we interact with the electricity in our environments. Electromagnetic radiation comes from a variety of natural and human-made sources, but it’s the human-made ones that are proliferating and causing the problems.

Sensitivity to electromagnetic radiation increases the more metals & other toxins are lodged in the body. The more toxic our environment becomes, the less able we are to detoxify, and for some people electromagnetic hypersensitivity (EHS) can result.

According to Cline & DiLuglio, there is still a lot to learn about the origins of this hypersensitivity: “The exact pathenogenisis of EHS is unknown but may be related to aberrant patho-physiological responses to the bioaccumulation of toxicants from various potential sources such as toxic chemicals/metals, surgical implants, infections, dental materials, and radioactive compounds.” They explain that “after surpassing a threshold of bioaccumulation, the body’s immune system loses the normal adaptive responses (tolerance) and becomes sensitized to exposures from unrelated stimuli such as [electromagnetic frequencies].”

Non-and-Ionizing-EMRSome researchers are starting to pay attention to electromagnetic hypersensitivity, as it is now found “in a subset of the population on a worldwide basis-wherever there has been a rise in the exposures to [nonionizing radiation]”, but others remain dismissive (or hostile), because acknowledging the scope of the problem would require an upending of civilization as we know it.

This dismissal is similar to the medical establishment’s attitude toward the implication of food in many of our serious health problems.

Nonionizing radiation, unlike the ionizing kind we’ve been wary of for some time, includes most of the standard accouterments of first world life: cell phones, wifi, electricity, appliances, televisions and the computer I’m typing away on right now.

What does nonionizing radiation do to individuals who are highly sensitive?

Cline & DiLuglio explain: “Symptoms of EHS can vary and mimic those found in many other disease processes. Therefore, a high index of suspicion is required by the health practitioner when gathering historical information. Common signs and symptoms of EHS are listed as: general malaise, headache, thought-processing difficulties, memory impairment, heart palpitations, sleep disorder, immune dysfunction, inflammation, blurred vision, weakness, dizziness, chest discomfort, muscle pain, tinnitus, fatigue, nausea, night sweats, restless legs, and paresthesias.”

Got any of those?

I wake up with a headache every morning in my city apartment. Never at our island cottage.

How is it diagnosed?

“The diagnosis of EHS is supported when symptoms improve with treatment.”

And the primary question: How is it treated?

By removing the sources of electromagnetic radiation as much as is possible, and supporting the body’s ability to detoxify.

I’ll address that in part 2.

Biohacking Update: 6 months on the Autoimmune Protocol

Matthew & I started the Autoimmune Protocol (AIP) on December 23, 2014. This is a quick update.

Fry up w crispsPain & medication

When we started six months ago, Matthew (who I adore) was taking 4-8 hardcore prescription painkillers a day for psoriatic arthritis & other inflammatory pain.

Here’s the amazing news: he’s off Methotrexate & he hasn’t had  any Tramadol or Dilaudid for a few weeks. He’s taking just 2-4 over-the-counter ‘Tylenol Arthritis’ a day & no other pharmaceuticals.

He still has substantial pain, but he can manage it with virtually no drugs. Comparatively speaking.

A dietary deviation at the 2½ month point set him back significantly, but he has recovered the progress he’d made before the divergence & has now surpassed it.

The moral of that is: no cheating on the AIP.

Baked Sockeye Salmon, Roasted Kuri Squash, Avocado

Nausea & Dizziness

Six months ago Matthew was also suffering from extreme, undiagnosed nausea & dizziness.

He still is.

Despite every diagnostic test the western medical system could throw at it (he’s been biopsied & scoped every possible way) no one has any ideas. At first they thought his liver was declining. Then they thought ulcers. Then Ménière’s. Though it’s good news that all of those tests came up negative, he’s still very debilitated, and still on disability leave from work.

We suspect it may be Small Intestinal Bacterial Overgrowth (SIBO), which the gastroenterologist assured us does not exist. But the gastroenterologist seems to be fresh out of other ideas, so we recently found a Functional Medicine doctor who does believe in SIBO & seems to be approaching this in a rational way.

Four reasons we suspect SIBO:

  1. The only relief from nausea was after being on a low-FODMAP version of the AIP this Spring. When he put the FODMAPs back in, the nausea slowly returned.
  2. wrapsIf the nausea & dizziness was autoimmune, you’d think it would have also responded to diet, given that other autoimmune symptoms have.
  3. Matthew had Irritable Bowel in his twenties & thirties. Until he met me, really.
  4. I’ve told Matthew we’ll keep trying things until we figure this out.

Me

Hey, I’m just living in a state of peak experience all the time & I’m evangelical about how great I feel.

Read my update here.