Category: Biohacking

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Biohacking Chronic Disease

Day 1471 and Lemons into Lemonade

I was so disappointed yesterday as I read over my most recent set of bloodwork and found my autoimmune biomarkers headed in the wrong direction.

I’ve been well controlled though my disease is not “inactive” or in remission. I manage it as it’s worth it to me to have a quality of life that includes working in technology as I want to be a part of making the tools that enable material progress in health.

Seeing things go in the wrong direction when my life is going in the right direction had a clarifying effect on me.

Not that I’ve been unaware that I must work at my health but rather it’s hard to always be working at health as it’s a matter of survival. But when you see a change in the data you act. I got serious and immediately went into action.

I’m so lucky to have to have access to an incredible community of biohackers. That I can ask someone who is studiously pursuing health in public is the best of the internet. I get the benefit of Bryan Johnson’s open sourcing his work. I’m doing an experiment with HBOT or hyperbaric chamber oxygen therapy and I learned from him I need it to be 2 atmospheres to be effective. This helps me plan and find hard chambers.

I can use Perplexity and Claude and even make my own personal assistant trained on my condition and my data is the remarkable thing.

I’ve found a new IL-17 inhibitor that looks to have twice the efficacy of my current one at the same dose. It was only approved in Europe but finally came on the American market. I was able to discuss it with my doctor immediately after going down a short question sequence on perplexity. You have so much power to improve your life now.

Shopping

I’d like to improve my V02 max and cardiovascular health in a way that works around my psoriatic arthritis and ankylosis. I have significant fatigue from the pain and obviously high impact isn’t in the cards for me. But I can try something like a DeskCycke. It’s even possible for me to do HIIT training with one. So I bought one. My goal is to improve my V02 by 10% in 8-12 months which shouldn’t be hard as mine is absolutely awful

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Biohacking Chronic Disease Medical

Day 1470 and Disappointing Biomarkers

After my anaphylactic adventures over New Year’s, I decided it was time for a fresh round of bloodwork to see just how my inflammatory responses were doing.

I got them back and it shows exactly what you’d imagine from a patient with an active autoimmune condition. My sed rate, or erythrocyte sedimentation rate (ESR) made a significant jump from last measurement.

I’d been on the high end of normal for almost two years and this set returned with doubling of the previous number. This biomarker is used in conjunction with C-reactive protein (CRP) test to determine overall inflammatory responses. That test came back modestly elevated but not atrocious. I also have elevated IgA levels, also known hypergammaglobulimia so that’s a bummer.

It would seem that my relatively well controlled autoimmune disorders (psoriatic arthritis and ankylosis) are moving to an active phase.

Given my use of IL-17 inhibitor injections along with a pain management protocol, lifestyle and nutrition management and a focus on holistic interventions, these results are obviously quite disappointing to me.

It would seem 2024 was harder on me than I’d have preferred and 2025 will be a year of doubling down on holistic therapeutics. Red light, infrared sauna, cryotherapy, hyperbaric chambers oxygenation, and any other anti-inflammatory treatment I can throw at it. Not that I’m looking forward to trying get another round of elimination diets but needs must.

I’ve not changed my the cornerstone therapy secukinumab since the pandemic, so it may be time to see other options like Janus Kinase (JAK) Inhibitors.

I’ve tried Tumor Necrosis Factor (TNF) Inhibitors as well as methotrexate (otherwise known as chemotherapy) and none of those treatments (Humira, Embrel) helped much and dosing on and off of biological injections is a long process. It can take up to six months to see results and changing a treatment that has been working comes with significant risks.

I’m lucky that even with these biomarkers I am still functional. I am able to work semi-normal hours and am able to groom and exercise. I have no personal life to speak of nor do I have hobbies beyond my work (unless reading counts) so I’m lucky to love my family and work enough to have it provide enough meaning to keep going.

Much of my success in treating this chronic complex case has been made easier with the breakthroughs in artificial intelligence.

Even as my physicians have retired and my care team rotates, I am able to progress and learn more thanks to large language models and search tools like Perplexity. I’m confident I will find a way to get back to remission quickly with little disruption.

Nothing provides me as much motivation to work as disease. I see how I and other patients like me suffer and I double down.

The progress we’ve made on autoimmune conditions in the wake of Covid and the rapid progression of protein discoveries as more AI tooling comes online. A chaotic world with a chaotic body drives my investing. We can do better as I see so much progress.

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Biohacking Chronic Disease

1452 and Bone Deep Weather

When the weather begins a shift to wet, cold or otherwise stormy, I feel it like some poor grandmother in a folktale.

My joints begin to ache, I feel swelling across my fascia and my ankylosis pain intensifies. Why do joints hurt when a storm system moves in? We’ve got a couple plausible explanations for all too common phenomena.

Barometric Pressure Changes: Before a rainstorm, barometric pressure (the weight of the air) typically drops. This decrease in external pressure can allow tissues surrounding the joints to expand.

Humidity and Inflammation: Rainy weather often brings high humidity, which may worsen inflammation in joints, particularly for those with conditions like arthritis.

Thanks to Perplexity the bone deep discomfort of a storm front becomes much easier to understand.

Cold conditions can stiffen joints by thickening the synovial fluid that lubricates them. Reduced blood circulation may also contribute. Changes in weather can make nerves more sensitive which amplifying pain signals.

The remedies for these changes are pretty basic. Stay warm, get your blood flowing with some light exercise, stay hydrated, stretch and take anti-inflammatory medications like NSAIDs to mitigate discomfort.

I asked Grok to draw me as a cyborg granny out in front of a storm

Prompted Grok to draw me as an arthritic cyborg granny in a rocking chair waiting and watching as a storm comes in.
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Biohacking Chronic Disease

Day 1433 and Pardon The Interruption

I’ve been running around keeping a busy schedule while I’m on the road for a few weeks on the west coast.

I had a number of things I wanted to do today but I’m so tuckered out I have been slowly passing on everything.

My stomach is upset, I’ve got a migraine that isn’t quitting and everything hurts. So pardon me for the interruption in my regularly scheduled posting but I am going to attempt one of those sixteen hours of sleep nights in the hope that any issues can be fixed with rest.

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Biohacking

Day 1409 and Setting Up Red Light Home Automation for Better Sleep

I struggle with some chronic illnesses so biohacking is a hobby. Recently multiple friends have been discussing the benefits of using red lights at night to improve sleep quality.

There is some evidence blue light from screens decreases melatonin production which is why so many sleep hygiene guides suggest using a program like Flux on your screened devices.

Running red light for 2-3 hours before bedtime may help lower cortisol levels and increase melatonin production. Plus it gives your bedroom a fun boudoir vibe so we thought why not try it?

Philips Hue 60W Bulbs

We bought a set of Philip Hue bulbs for the three lamps in our bedroom. They sell their own automation systems to manage your thoughts but we already use Home Assistant from the Open Home Foundation for automation because it allows us to run basically everything entirely locally with no cloud dependence or internet access.

For our existing lighting we use a combo of Lutron Caseta (for built in lighting) and Philips Hue bulbs (for plug in lamps). For the purposes of the red light experiment in the bedroom, we are using all plug in lamps.

For the Hue bulbs, instead of using the Hue Bridge and the Hue App, we use the built in Zigbee radios to pair directly to Home Assistant.

Phillips should be commended for using open protocols and enabling users to use these non-proprietary standards. Interoperability is good.

To achieve the light color changes we wanted, there is a plugin called “adaptive lighting” that automatically color and brightness shifts the bulbs through the day (subject to plenty of configuration options).

In our case, Alex set them to go very red (1000K) while also limiting the sunrise to no later than 6am and the sunset locked to 630p in order to fit into our routine and preferred bed timings.

iPhones have an automatic white balance on their cameras but it is actually quite red at night

The lights mostly work automatically but for when manually control is wanted, there are Zigbee remotes on each side of the bed as well as Home Assistant bridged to Apple HomeKit so everything can be controlled via the Apple Home app or through Siri.

It may sound complicated but there are plenty of tutorials in the open source community to help guide you. As we get more data from our own biometric tracking I’ll be sure to discuss it here and on Twitter.

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Biohacking

Day 1401 and Detox

I’m sure many a doctoral thesis has been written on the obsession with bodily purity and eternal search to rid oneself of toxins.

I’m not an academic but I was on the original Goop team in the far distant past when I worked for legendary adman Peter Arnell. So I’ve had a lot of exposure to particular purity culture that is modern consumer culture detoxing.

While I had hippie experiences with detoxification and also real ones like mercury chelation (which is a fun story), nothing is as intense as rich white women detoxing. From herbals to enemas to fasts you have a lot of choice.

I am all for the woo woo. The aspiration that if one just exercised enough control over oneself that all ailments could be cured is alluring. It’s also fucked up. Bodies are notoriously difficult to control and medicine is littered with mysterious ailments afflicting saints and sinners.

Alas I’m still tempted by this philosophy. I spent four days in Miami and I feel like a bunch of expensive detoxification treatments would be just the ticket. I’ll probably just sleep it off though.

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Biohacking Medical

Day 1375 and Titration

My joyful excitement over finally wearing a bathing suit I’d never worn? The peaceful swim in the salty sea ended in disaster within just a few days.

On Friday the allergic and autoimmune symptoms were so bad I took 5mg prednisone. On Saturday they were no better and I upped the dose by 2.5mg to 7.5mg. I moved forward my absurdly expensive biologic injection by a day. I haven’t been able to convince my health insurance to get them more frequently so it’s a risk.

I’m doing better today. My pain is abated to an almost unnoticeable level at a 2. That’s rare for me. And it makes me want to rush into as much work, chores and activity as possible just to enjoy it.

I’m typically working with a 5-6 level of pain on any given day but I can work (with medication) up to a 7 within reason. Past 8 I’m in bed and struggling.

The downside is of course that prednisone just sucks. It messes up your appetite. You balloon up almost instantly with side effects like moon face. And your body develops a dependency quite rapidly.

Titration off of steroids like prednisone require a steady and slow discipline so you don’t get “blow back” as it can make your symptoms even worse.

I’ll have titration for a few days ahead of me. But maybe I’ll get to enjoy the lack of pain. Already I’ve cleaned for an hour, done laundry, checked off a number of small “to do” list items and I am blessedly free of the exhaustion that comes from working with moderate to severe pain that is my normal daily experience.

I was sent a study in the journal Nature about a team who used CAR T therapies to achieve total remission in 3 patients. And I see hope on the horizon.

One woman and two men with severe autoimmune conditions have gone into remission after being treated with bioengineered and CRISPR-modified immune cells1. The three individuals from China are the first people with autoimmune disorders to be treated with engineered immune cells created from donor cells, rather than ones collected from their own bodies. Nature

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Biohacking Medical

Day 1367 and Proper Names

My mother always insisted pharmaceuticals and supplements be called ny their chemical composites rather than a company’s brand name for it. She believed medicine shouldn’t requiring marketing & branding.

Instead of Benadryl it was diphenhydramine. For a headache we used ibuprofen not Advil. Acetaminophen was the proper name not Tylenol.

She taught me what went into popular brand name medication like DayQuil and I learned the ratios of guaiphenesin to dextromethorphan. Always take the minimum viable dose she’d say. And if I only had a cough I didn’t a fever reducer.

America is lucky to have a thriving generic medicine market. If you are a Costco shopper you can buy thousands of tablets of every crucial over the counter medication at just a few cents per dose.

There is a new series from healthcare publisher Trade Offs about issues in generic medicine manufacturing. It’s well worth your time getting to know more about how we came to have generic medicine (the Hatch-Waxman Act) and where the weaknesses are in the business of supplying these crucial medicines.

Take the time to read more on the issues as it’s been forty years of struggle for access and safety and we are experiencing shortages and supply chain risk that is unprecedented.

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Biohacking

1346 and Oversleeping

Apparently it gets harder to sleep well as you get older. I’m no spring chicken as an elder millennial but I have had pretty consistent sleep hygiene over the past few years.

Like many biohackers, I monitor my sleep on an Apple Watch as well as a Whoop (which incidentally I absolutely endorse) whose data I sync across a few other biohacking apps.

I wrecked my sleep consistency this week as I changed my schedule to overlap more with the East Coast and European markets for work. On Friday night I found myself absolutely wired and unable to sleep. I was what students of nervous system work might call “activated” and couldn’t get myself down to baseline.

Eventually, in desperation, after attempts as varied as hysterical crying, box breathing and reading 10,000 words on female homicide statistics, I took multiple types of downers.

And I don’t mean friendly things like melatonin or chamomile tea. I went for the dreaded Jordan Peterson nemesis the benzodiazepine. I needed to sleep.

And thanks goodness I did. I was out like a light till an almost 3pm. Whoop was thrilled with my sleep performance. Which I admit feels weird to see as no one wants drugged sleep to be good sleep but alas it was good.

Whoop data readout on a long “day” of sleep with five hours of restorative rest after sleeping through to the afternoon

I spent a third of my time dreaming which must mean I’m working through something. the activation of my nervous system clearly meant something. I got excellent rest and it was worth it. I overslept a lot and I hope that I’ll be right as rain for my sleep hygiene thanks to pulling the ripcord and getting sleep by any means necessary.

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Biohacking

Day 1324 and Sensitive to Input

Maybe the intensity of sensory inputs is worse than it used to be, but I think of myself as being a sensitive person.

I have strangely acute hearing, I struggle with bright lights but in particular screens, and I am often unsettled by smells, flavors, and textures. Life feels like it’s having at 10x the density and clarity that I’d prefer.

It’s probably just the flavor of autism that seems to plague every other person on the internet.

Today I found myself focused on the texture of a pair of socks that I’d just purchased. It felt as if they were rubbing the top of my feet raw. But it all looked fine when I took them off. I applied moisturizer and put them back on but it still itches.

Sensitivity is annoying and I am chalking it up to fatigue. I’ve been excitedly putting in long hours for work so every input might simply be on raw nerves.