Category: Chronic Disease

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Chronic Disease Politics

Day 1490 and Healthcare’s Sin Eaters

I went to see a rheumatologist today. I had the baffling experience of them wanting to actually get to know me. Which was surprisingly unhelpful in the moment but really nails vibe we’ve got with healthcare in America.

I kvetched on Twitter that I spent my week defending hot girls and open source software while I deride Big Pharma and public employee unions. That’s more of a humble brag about my priorities. But I felt bad that I picked on pharmaceuticals. I got replies. Why harsh on pharmaceuticals? And actually fair.

Drug companies are the least bad of some very bad actors. For all its faults, drug companies are not just existing to be parasitic like pharmacy benefit managers or generate wealth through regulatory capture like Epic.

If anything pharma is the sad scapegoat in healthcare. We pick one drug a decade to laud & then like clockwork do a hard reversal on it in a decade or two. Patients get hurt and doctors did their best. We saw with statins, SSRIs, opioids, adderall, and I’m sure soon GLP-1s will be next to have Netflix documentaries. Someone is always to blame and it’s usually the drug companies.

Some category is designated a sin eater for the system’s horrors. Which isn’t at all fair as all those drugs serve real needs. Sorry Oxycodone you remain a villain. But why is American in so much pain?

Which gets back to my surprise as having a doctor who wanted to get to know me. We came in with a typed up diagnostics sheet with a timeline of treatments, protocols and medications and the bastard has the audacity to ask me about the quality of my life.

I hesitate to say “well shit” because I am Protestant from Scandinavians stock because we pride ourselves on being “oh just fine”

And of course I’m the asshole who quotes Kierkegaard at my doctor. Sickness unto death right Doctor? Which I guess is a bit of a downer.

The man actually asked me if I’d consider managing my pain more aggressively. I am absolutely mogged by the audacity of the sentiment that I could suffer less.

Apparently no one scans you for drug seeking behavior when you chuckle and kneel before what God has decided for you. So that’s a good trick I guess for the less sincere.

You can really see how public perception of RFK Jr is so different from what elite narratives would like to see. People are with RFK’s righteous indignation. Why are so many suffering?

The cranks and the crazies are here because America is mostly gaslit by a nest of bad incentives. Doctors don’t want any of this. Neither do the drug companies. But someone has to be blamed and it’s usually the guys with the money. But they are trying as hard as anyone to actually come up with solutions.

Maybe no one deserves to have a righteous Kennedy come after them. But everyone feels a little bit crazy with how the system works now.

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Chronic Disease Politics

Day 1486 and Odds and Ends and Migraines

It was a busy week. I felt physically well through most of it, but yesterday and today I am struggling. I’m in bed with a migraine that I think I accidentally kicked off by enjoying a quiet walk on sunny snowpack.

Amusing that people think we don’t get enough sun for solar power

While I prefer to have illness strike on a weekend, I feel irritated that I often get my personal time used up by health issues. I very much prioritize using my good hours for work.

Which on that note, I’d love for folks to check out a bill in Montana to secure a right to compute. What started as an idea has now officially been introduced into the legislative process. It’s a big victory to have this under consideration.

I was also in the New York Times this week in a column by James Pogue. It’s my second time being interviewed by him and I think quite highly of his reporting.

A few quotes in the New York Times on the tech right, the H1B debate, and a general sense of getting back to business

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Biohacking Chronic Disease Medical

Day 1483 and Trending Up

I let myself get a little shook up by some poor health news early in the month. I’ve been pushing it physically all through 2024 as let’s be real it’s an exciting time. To fully capitalize on that acceleration we are all more focused on improving our health.

I’m taking action and optimistic about where we are headed with improvements in healthcare. I was able to rapidly iterate through options and set up surprisingly effective new treatments.

As we’ve work through the significant impact of the pandemic on our understanding of post viral illness and autoimmunity, we’ve had a more systems driven approach to testing interventions beyond pharmaceuticals reach more people.

Not that all pharmaceutical interventions are bad obviously as I’m lucky to have interleukin inhibitors in my life. I was able to find a new option with my doctor thanks to help from Claude and Perplexity.

And this progress is happening across all areas of medicine. I am also incredibly bullish on the benefits of GLP-1 inhibitors and their next generations. Inflammation and metabolism are intertwined in ways we can control barely articulate beyond “mind body connection” and yet we are developing the vocabulary.

I enjoy strange adventures in the future now. I am going to be experimenting on my body as it helps me understand not only myself but the evolving opportunities in investing. Even science fiction is excited about biotechnology.

The problems I am solving for myself teach me how we will allocate resources across many industries. The energy required to power artificial intelligence and the chips required to run those models will be pulled forward by our desire for solutions to living healthy lives

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Biohacking Chronic Disease Medical Uncategorized

Day 1476 and Don’t Stop Till You Get Enough

I’m thrilled to see that the very week I began my hyperbaric chamber oxygen therapy that we’ve had multiple experiments and data come in.

Bryan Johnson helped answer a few questions in my set up so I was delighted to see he himself was just wrapping up a major experiment with HBOT.

Step into my hyperbaric chamber courtesy of Bryan Johnson’s Twitter

Earlier in the week Harvard professor David Sinclair tweeted a thread on with links to the newest scientific literature on treatment. Stuff with names like Activation of SIRT1 by hyperbaric oxygenation promotes recovery of motor dysfunction in spinal cord injury rats

Esssays

A lovely meditation on what happens when you write 11,000 blog posts. In this case startup blogging. I’m written an order of magnitude less so hopefully I can avoid some of the negative consequences and enjoy the lessons.

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Biohacking Chronic Disease

Day 1475 and Equalizing Pressure

I scared someone really badly today. As I was being locked into the hard shell for my eighth hyperbaric chamber oxygen therapy session, I realized I had forgotten my chewing gum.

At 2 atmospheres of pressure it can be a real challenge to keep your ears from getting painfully congested. Even with yawning and blowing oxygen out your nose, it’s like going into an airplane with a sinus trouble. It’s uncomfortable but it can also be dangerous.

Careful. Equalize the pressure in your ears. If you feel your ears stuffy, equalize the pressure in the following ways. 1. Yawn 2. Swallow saliva. 3. Close mouth, pinch the nose, out of breath, blow the nose (all spelling mistakes theirs)

I got a little panicked as I was trying to stop the clinic technician from finishing the sealing process as I wasn’t sure if they could stop it once it was sealed or if I would need a full decompression cycle.

I was texting frantically “I forgot my gum can this be stopped ASAP so I can get it?”

I was tapping the window on the hardshell with a worried look and showing the text. I kept trying to make the font bigger and be clearer. FORGOT GUM OPEN?!

But it was confusing enough that everyone in the room thought something was seriously wrong. Which it would have been without the gum as I can’t do a full hour at 2 atmosphere without the help of the chewing. All the yawning, blowing out through the nose and other techniques aren’t quite enough.

It wasn’t yet an emergency. If it was I would have hit the big red button. But everyone seemed to think it was. After 2-3 minutes of frantic miscommunication it turned out that it was fine to open it up but we’d need to restart the seal and pressurize it again. I got the gum. And look who was on the TV screen.

Just don’t die while inside the chamber

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Biohacking Chronic Disease Medical

Day 1473 and Sunday Slumber

I dislike having to set specific wake times up for early morning obligations. It always disturbs my sleep the night before as my mind convinces my body I must avoid missing the obligation. I’ll wake up 3-4x more than average to check the time and I’ve not oncd overslept.

As I’ve been doing an intensive course of HBOT (hyperbaric chamber oxygen therapy), I’ve been obligated to show up at a specific time and place each day. And it’s really messed with my sleep as my mind seems intent on reminding me to wake up early enough to be on time.

I’ve got a day off today and I’m happy to be spending it sleeping and browsing the news.

News

A bear steepening or selloff of longer duration bonds is freaking markets out. The WSJ thinks maybe you should take the other side of the trade. Knowing what government will be functional and fiscally stable in 30 years is a hard bet for anyone to make.

Remember GameStop frenzy trying to mess up Steven Cohen and his hedge fund Point72? Well he beat other funds with 5 billion in profit this year and increased fees. But diamond hands are forever.

Trends

Disaster girls are the new professional girlfriend.

Nuclear energy is making a comeback according to Bloomberg. I’ve got an SPV for you if you are looking for early stage projects. HMU on DMs and I’ll send you along.

Luxury is tanking so maybe cater to older shoppers with money?

Reading

One of my favorite founder/authors Hannu Rajaniemi has a new book called Darkome. It’s not available in the American markets yet but he’s hosting a book party for the JPM Health Conference in San Francisco on Tuesday. I have a few invites. Again DM me for the hook up. It’s a fantastic thriller

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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.

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.

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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.