Their autoimmune disease affects their reproductive organs, but they keep that painful fact to themselves.
Autoimmune diseases that affect the genitals include Psoriasis, Lichen Sclerosis, and Hidradenitis Suppurativa, among others.
Then there are the conditions that affect the reproductive system internally, like Endometriosis.
Still others occur in the pelvic region, like Interstitial Cystitis.
Any of these conditions can have a profound affect on a person’s sexuality.
Why the Silence?
Secrecy about the impacts of these autoimmune conditions is a by-product of our repressive attitude toward sexuality generally (a subject I explore in 3 Steps for Hacking Sexuality).
Today I shed more light on autoimmune conditions that affect the reproductive organs by sharing a case study of a person who lives with genital psoriasis, a form that affects up to 50% of people with psoriasis according to the National Psoriasis Foundation, but is rarely mentioned.
Websites that address genital psoriasis are brisk and cheerful.
They suggest that with the right ointment and the right attitude, a raw and weeping genital area could be almost invigorating. Or at least no more than an inconvenience. Read More
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.
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…
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.
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.”
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 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.
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.
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.”
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.”
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.
One of the creepier aspects of psoriasis is that is can effect the nails, causing severe overgrowth & deformation, crumbling nailbeds & exposed nerve endings.
Psoriasis is an autoimmune condition that causes overproduction of cells. Skin cells, usually, resulting in patches of overgrowing skin on the body.
In the case of Nail Psoriasis, finger & toe nail cells proliferate, creating nails that thicken or begin to ripple & buckle like tectonic plates.
The places where the overgrowing nails dig into the nail bed can be excruciatingly painful. And because of the disregulated cell production in surrounding skin and nails, nerve endings can get exposed between the nail & skin at the top of the nail, or on the nail bed where overgrowing nails pit or crumble.
Of all the painful symptoms I have watched Matthew endure over the years, crumbling nailbeds get the top prize. It’s the kind of pain that makes a person curl up in a corner like a hurt animal & want to die.
So it’s not insignificant that his fingernails now look almost like a normal persons and hardly give him any trouble at all. His toenails still have a slight loup garou tendency, but they’ve improved substantially, too.
We credit the gummies. The AIP & the gummies.
This is the everyday gummy recipe we use at our house. Three ingredients. Two, if you only use one kind of berry.
This recipe works best with frozen raspberries, because when they defrost they joyfully give up their juice, which is then used to bloom the gelatin.
To celebrate the power of gelatin, you’ll also find a few links to other AIP-friendly gelatin recipes below~.
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.
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:
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.
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.
I’ve been communing with my gatherer ancestors lately. By filling my pockets with rosehips, processing them & making these gummies.
I’ve come to appreciate the worth of a sharp knife. When you’re a gatherer~hunter~scavenger a sharp knife is a prized possession.
Admittedly, processing rosehips is time consuming.
But it’s the kind of activity that humans have engaged in from the beginning of time, so it can also be profoundly relational. In an ancient-generational way.
I knew rosehips were supposed to be a fabulous source of vitamin C, but it turns they are also being seriously investigated by researchers as a remedy for symptoms of Rheumatoid and Osteo arthritis.
So mixing rosehips with grass-fed Gelatin might just be a recipe for superfood for an arthritic guy like Matthew. He has Psoriatic Arthritis, but anything that works for Osteo & Rheumatoid might be efficacious for the Psoriatics, too.
Use the hips from wild dog roses or any other unsprayed roses that create robust hips. Select the firm ones for maximum hipness.
It’s been a month since Matthew has been including Gelatin in his diet on an almost-daily basis & his fingernails are starting to look almost human.
Without oversharing ghastly details about the werewolf tendencies of his Psoriatic fingernails & toenails, including their tendency to disintegrate, exposing the nail beds & the nerve endings that lie there,let’s just agree that having almost normal nails is a beautiful, wonderful thing.
The gatherer~hunter~scavenger ancestors prescribe Raspberry~Rosehip Gummies. Daily. At least they do over here. Ask them yourself & see.
Looking for grass-fed gelatin? You can find Great Lakes gelatin on amazon. But if you’re in Canada, the shipping is prohibitively expensive. Health Essentials mail-orders anywhere in Canada. And is it really grass-fed? Detox-Mama sleuthed that out.
Peel & chop ginger. In a saucepan, simmer the ginger & 3 cups of water gently while you process the rosehips.
Rosehips: Trim the flower & stem ends with a sharp knife & cut each hip in half. Discard any that have brown flesh. Using your thumbnail or a sharp knife,or probably a combination of the two, remove the seeds & fuzz & trim any brown bits. Persist until you have ½ to 1 cup of de-seeded rosehips.
Strain the ginger from the tea with a seive. Top up the ginger tea with additional water if need be until it measures 1½ cups.
Pour ½ cup of the ginger tea into a medium-sized mixing bowl, to cool.
Return ½ cup of the ginger tea to the saucepan with the de-seeded rosehips & simmer gently until the tea is evaporated & the rosehips are softened. Add the raspberries, cranberries, cinnamon & the final ½ cup of the ginger tea. Heat through.
Next, add the lime juice to the ginger tea waiting in the bowl & sprinkle the gelatin on top. Stir it up, pressing out any lumps of Gelatin with the back of the spoon.
Then, whirl the hot berry mixture in a food processor and add it to the gelatin. Mix thoroughly.
Spoon into silicon molds or line a biking dish with parchment paper & pour the mixture in.
If using silcon molds, freeze for 2 or more hours until the perfectly-shaped gummies can be popped out.
If using parchment and a baking dish, refrigerate until set & cut with scissors into bite-sized pieces.
Store in a covered container in the refrigerator. Have some daily.