Category: Chronic Disease

Categories
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.

Categories
Chronic Disease Medical

Day 1468 and Going HBOT

I was extremely frustrated with an autoimmune reaction that got out of hand over New Year’s. I don’t care for taking corticosteroids as their side effects are quite severe even if they can be the only option when an immune response refuses to calm down.

To repair the damage, I went to a holistic clinic that offers a range of services like infrared saunas, IV therapies, cryotherapy and hyperbaric chambers.

I’d heard good things about using HBOT therapy for autoimmune responses, particularly ones that are rheumatoid in nature. I’ve done two sessions so far and I have seen a remarkably swift improvement in inflammation and pain.

I’ve got 8 more ahead of me along with some glutathione and vitamin IV drips so I’m hoping to be ship shape soon.

News and Sundries

The Chinese venture ecosystem has funds engaging in some suboptimal behaviors. They are clawing back personal assets, banning them from services and putting founders on no fly lists. Which is needless to say not the best way to encourage innovation.

Mark Zuckerberg is taking a new tack with speech at Meta. The company employing content moderators for what is true is out and enabling Twitter style community notes are in.

Many moons ago Antonio Garcia Martinez warned that Facebook shouldn’t be involved in policing and censoring speech as it would lead down a dark path.

Much To Consider

Is most memetic self help that propagates well online now predatory in nature? A tweet thread to consider for those looking to have emotions or control them.

Categories
Chronic Disease

Day 1466 and Bubbles

I feel as if I have bubbles in my joints. They move and grow and every change hurts so badly I can’t stop myself from crying.

I’ve put out a request for biohacking help as it doesn’t seem like my current routines (which have been stable enough for normal work) are doing the trick any longer.

It’s hard sometimes to tell the difference between pain itself and the fear of the pain not relenting when the pain becomes acute. I get scared that the ever increasing pain won’t be controllable.

I’ll riffle through NSAIDs, Tramadol, and the dreaded stronger options as I do box breathing and voo-hum breathes. I’m practiced at throwing my attention away from the pain but the physiological impact is the same even if my mind can distance itself.

Before I was first diagnosed with ankylosing spondylitis and psoriatic arthritis, I had doctors try to convince me it was all in my head. “Take an Ativan!” I’ve never quite lost the fear that I won’t be taken seriously as pain management is such a clusterfork in America.

Addicts abound and doctors are often skeptical and malicious. It can feel as if those of us with chronic pain from illness will never be able to get enough distance between our genuine needs and the “drug seeking” junkies in crisis on our streets. We get treated like criminals with suspicion while zombies on the streets find other ways.

I’ve never known the supposed euphoria of an opioid like OxyContin as for me the rare occasion where I take on feels more like a brief respite from horror. There is no joy or ebullience. Only a mind of normality of function and clarity of mind which I imagine normal life is like for most people.

Categories
Chronic Disease Medical

Day 1456 and Altered Window of Immunity

You ever push yourself so hard (physically, emotionally, mentally) that you crash afterwards? This is a common human experience. It’s called an altered window of immunity. Over exert yourself and you get sick.

I’ve come to understand the Christmas Break period as my yearly window of altered immunity. One reason I like to fast during the Holy Nights is to bring down my own physical and emotional reactivity.

When basic functions feel stressful and even small involuntary processes like digestion feel inflammatory then the work of living feels toxic. At that point one hopes rest is enough to get it out of your system.

The human tendency to ignore small problems until they become big problems is surely part of a wider cycle of disease. We wait to rest and repair till it’s too late and find ourselves crashing. For everyone bobbing along on the waves of life be sure to take a deep breath before plunging back under. It just might save your life.

Categories
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.
Categories
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.

Categories
Chronic Disease

Day 1341 and Trade Offs

I enjoyed a long weekend mostly offline and with a group of interesting people. I enjoyed the extra elbow room of mountain remove as much as I enjoyed the atmosphere of a purpose driven community retreat amongst exceptional individuals.

I am however quite tired from the exertion of it. The danger of using a long weekend for anything that requires exertion from me feels ever present. I have so little room for error, and even with keeping my participation more limited than almost anyone else, it was still more than I could handle.

I even left a little early so I could have a full day at home without work to recover. I can feel my immune system overreacting and hope that this will be better by tomorrow. Anytime I feel flare symptoms I naturally get nervous. And frankly I’ve got a busy week ahead of me so I can’t afford needing more recovery time.

The busy season kicks off in earnest tomorrow and I feel sad that in reaching for a more demanding schedule to experience an important gathering that I’ve hurt myself in the process. Not going hurts in quite a different way. There is no winning with chronic illness just trade offs.

Categories
Chronic Disease Medical

Day 1330 and Unexpectedly Awful

I’ve been on a very steady health trajectory for the last six weeks or so after I kicked my lingering Covid symptoms from an infection I picked up at the beginning of the summer. Alas today I found myself with a significant pain flare.

I can barely focus on simple tasks like writing the pain is so forceful. Usually I have some warning with pain as it’s a symptom of an autoimmune inflammatory condition. If I over stress myself I’ll have consequences a few days later just like a regular person.

But today I went from working out to flat on my back in bed taking the highest doses of medication I’ve got. And I still at a 7 or 8 pain wise. I don’t quite know what to do about it expect as I’m not comfortable taking more medication.

I’m hoping it’s an anomaly and I’ll feel better tomorrow. I wish I could provide a better accounting of the sudden misery. But honestly the pain is so bad this is the best I can manage. Please no one worry as I don’t have the capacity to respond right now. I just can’t think clearly enough to write about anything but the pain so I’m stuck with chronicling it. And I’ve got a habit to maintain here where I write every day.

Categories
Biohacking Chronic Disease

Day 1323 and Dip to Progress

It’s always baffling to me when something that is supposed that is supposed to make you feel good makes me awful. And yet it’s a very consistent experience for me.

Every time I get bodywork done (massages, acupuncture, osteopathic spinal work, physical therapy) I feel like absolute shit for 24-48 hours afterwards.

I have an autoimmune condition called ankylosing spondylitis which is a fancy form of arthritis. It’s well controlled with medication and a healthy lifestyle but I am always looking for ways to increase my functionality as well as my capacity to tolerate stress.

This naturally leads me to want incorporate positive stress techniques like cold showers, saunas, and the thousands of other hacks to improve your capacity to tolerate stress.

I’ve tried supplements magnesium supplements to adaptogenic mushrooms and most major modalities of body work to even the whackiest of woo.

Yesterday I had an amazing osteopath work on my spine and yet today I feel about 10x worse than I did before I went in. The dip is just a misery of exhaustion, pain which leads to some anxiety from being tired and in uncomfortable.

I trust I’ll feel better after this dip and some progress as I recover from the good stress but at the moment I’m just miserable.

My assumption is that many things in life that make you feel better in the long term are uncomfortable. Delayed onset muscle soreness is a common issue for new weight lifters and pushes many out of their routines before they even get started.

It’s such an art finding the correct amount of stress to put your body under and I wish I had a more perfect intuition about how to do it. Until I do I’ll probably have to work through many types of dips.

Categories
Biohacking Chronic Disease

Day 1283 and nAChRs

Never one to take things laying down, I started a crazy “n of 1” experiment today. My family doctor prioritizes keeping up on literature. We’d chat about anti-inflammatory research in reputable journals.

But I am on week seven of Covid symptoms simply not clearing. I’ve been coughing when under stress or exertion, my seasonal allergies exacerbated the issue, my reconditioning of my cardiovascular system wasn’t going great and I was exhausted.

At a visit with my osteopath who helps with my chronic autoimmune issues in my spine (I’ve been diagnosed with ankylosing spondylitis) I mentioned my ribs felt tender and constricted from Covid coughing.

She asked me if I was familiar with the research coming out about Nicotinic acetylcholine receptors and Covid-19 treatments. She’s casual like that.

Now I am a child of the internet so I’m passingly familiar with Gwen’s work documenting scientific literature on nicotine but I had not ever thought I’d try it myself.

In a joking “don’t try this at home” way my osteopath said she’d seen folks use nicotine patches for a week to shorten their Covid symptoms to some success.

Now for some caveats. In any type of crazy self treatment it’s important to consider your risks and consult a professional. Don’t do anything without your doctor’s input. Every medicinal treatment has risk and side effects.

I am using going to use a 7mg slow release nicotine patch (of the type made for smoking cessation) for the next 3-5 days to see if it impacts my over-stayed their welcome Covid symptoms. I started my experiment at 9am Saturday July 6th.

I am treating this as a “kitchen table” science experiment in which I am clearly an N of 1 from which you can only take anecdotal evidence. But maybe one data point becomes many and with the network effects of social media maybe we push forward other experiments.

Here is what I know so far thanks to searches from perplexity AI but I encountered some of the papers through mutuals on Twitter, some on forums, others I’d discussed with physicians, some were just raw dogging Google Scholar.

The AI synopsis I’m sharing isn’t meant to be conclusive just to give interested parties a starting place to see why I believe this is an experiment I’m comfortable running on myself.

Nicotinic acetylcholine receptors (nAChRs) have been proposed as potential therapeutic targets for COVID-19. Research suggests that the SARS-CoV-2 spike protein may interact with nAChRs, potentially influencing the disease’s pathophysiology[1].

Nicotine and other nAChR agonists could modulate inflammation and the immune response, offering therapeutic benefits[2][3].

Sources
[1] Simulations support the interaction of the SARS-CoV-2 spike protein
[2] Disorders of the Cholinergic System in COVID-19 Era—A Review of
[3] SARS-CoV-2 spike ectodomain targets α7 nicotinic acetylcholine …

Given that I’m working with inflammation as my primary issue which is not modulated even without Covid, I was obviously quite curious to learn about this cholinergic system and potential for up regulation. I’d seen discussions as early as 2020 about the curious fact that smokers had experienced some protection from Covid infections.

This all clicked in my head as being testable on my own without significant risk. Gwern had significantly reduced my concern about nicotine usage where previously as a child of the drug wars I’d put smoking nicotine in basically the same category of dangers as injecting heroin. It is not.

It seems it is possible we’ve got an explanation for why smokers didn’t catch covid at the rates you’d expect and they did better with the infections. We may even have things to learn from it to improve treatments.

Nicotine agonists could potentially be used to prevent inflammation in COVID-19 patients by modulating the immune response. Nicotine, a cholinergic agonist, has been shown to inhibit the release of pro-inflammatory cytokines, which could help mitigate the cytokine storm associated with severe COVID-19[1][2][3].

The cholinergic anti-inflammatory pathway, activated by nicotine, suppresses maladaptive inflammatory responses, suggesting that nicotine or similar agonists might offer therapeutic benefits in managing COVID-19-induced inflammation[3][4][5].

Sources via PerplexityAI.
[1] Nicotine and Covid
[2] Can nicotine alleviate the dysregulated inflammation in COVID-19? L
[3] Medicinal nicotine in COVID-19 acute respiratory distress syndrome
[4] Nicotine and the nicotinic cholinergic system in COVID‐19 – PMC
[5] Cytokine Release Syndrome (CRS) and Nicotine in COVID-19

Stopping a maladaptive inflammatory response is one of my top goals. If I can test it out with a cheap over the counter substance well I’m interested.

Andre Watson the CEO of Ligandal (not an investor just a fan) an AI discovery platform for precision targeting of therapies suggested a method of action for nicotine’s effect.

Nicotine and quercetin were some of the earliest predicted compounds to reduce the binding affinity of the spike protein to ACE2 — which in turn, we described the MOA of here: biorxiv.org/
TL;DR is that reducing the affinity may increase neutralizing immune response.

I do want to reinforce that I am aware nicotine is addictive. I’ve had to take drugs that form chemical dependencies in the past. I’ve used Prednisone in the less controlled phases of my spinal condition and tittering off that steroid is a nightmare. But it can be done. It is doable with a plan, careful monitoring, and supervision.

All evidence suggests this experiment isn’t long enough for me to develop a dependency let alone an addiction. I am thankfully free from any genetic predisposition to addiction in my family.

I plan to do a B3 Niacin flush at the end which is meant to help tittering. I will also be monitoring my heart rate as Nicotine has a tendency to raise your BPM so if I don’t like what I see I’ll lower dosage or stop usage.

With all that said, let’s see if it helps me out. I’ll post because it is in my nature.