Category: Chronic Disease

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Biohacking Chronic Disease Medical

Day 1668 and Rounding The Corner

I really feel the weight of month of July today as I am just now getting the sense I am making a recovery. I did not have post surgical wound care for an abscess on my list of “to do’s” for the month but here I am.

Nor did I expect to work through a pathology report on my own while cobbling together the best blend of infection coverage through a globe spanning set of physicians and sub specialties.

I didn’t know what a sub dermal panniculitis was or how to treat an infection where that was a proximate side effect. But I learned and I managed my care to a much better result. I had real consequences from disinterested burned out doctor and I had to step up.

Frankly I’ve spent more time on artificial intelligence projects doing differential diagnostics on myself than I ever conceived was possible. I owner my own data and inputs and I could make inferences while corroborating it with physicians who are more interested in my care.

I am a slow healer and there is a high cost associated with immune suppression biologic drugs for chronic autoimmune conditions. I have no choice but to be active in my own care and tools as simple as a deep search on Perplexity take you so far.

There is a high cost to healthcare in America and it’s not getting any better. That I can now reliably use any number of commercial AIs to break down lab and pathology reports is a huge boon to all of humanity. Real miracles are happening because someone used AI to double check blood work and symptoms.

Healthcare gets rationed by price or by time and we’ve never really known an abundance of trained doctors in my lifetime. But we might have an abundance of intelligence about healthcare in our lifetime.

Part of put quandary with care in America is regulatory capture by organizations like the American Medical Association and others of its ilk. Of course they prioritize what works best for keeping their continued privileged position on care.

I lost a lot of time this month to health but I gained more than I realized. We are seeing changes in a system that has only ever known scarcity. And we know it’s not good enough.

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Chronic Disease Medical

Day 1666 and Disability Rolls

It’s a shame that National Public Radio is going out in a Trump fire as used to regularly produce reporting that I find informative. Look at this old piece of reporting. We have seen a steady rise of disability rolls.

Thanks to their work I was made aware of the disability industrial complex and I was introduced its scope and cost. Even 2013 National Review was singing its praises. And it is staggering that disability has become the fall off program for those who only have unskilled labor to offer. Disability replaced welfare. And it’s not gotten any better.

I think about how easily I could have ended up on disability myself given my health issues if I didn’t work an information economy type of job you can do sitting day.

But I also know there are ranges of accommodations for most of the work I have now. Things could change and that work might be less valuable. I’m sure many Americans are considering this as automation and artificial intelligence threaten knowledge work.

I was somewhat aware of the relationship to welfare burdens being shifted from the federal government to states during the Clinton era for the rise of disability as it is still paid at the federal levels.

Naturally it meant a growth in disability as Washington D.C. has more money than say Washington state. But to realize just how much money disability rolls have grown and how tightly related they are is salient in our current financial and budget situation.

Comparison of lowered welfare rolls to the rise of disability claims. Source: Social Security Administration Credit: Lam Thuy Vo / NPR

A person on welfare costs a state money. That same resident on disability doesn’t cost the state a cent, because the federal government covers the entire bill for people on disability. So states can save money by shifting people from welfare to disability. And there are whole corporations that exist to make that transition seamless.

We are burdened by the unfit to work as manual labor has nowhere else to go but we will find other disabilities and other ways to get around labor if the contribution to rears ratios don’t work out in someone’s favor. After Covid this calculus got a lot worse.

Especially if health insurance continues to skyrocket. Better a live of poverty and healthcare than a live of poverty and no healthcare. But who knows if we choose to tackle this problem and when. If it’s all about getting what you can and we are in the exit scam era of America I am afraid to learn about the privileges of working while disabled.

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Chronic Disease Medical

Day 1664 and Pathology Report

Well, we finally got the culture and pathology reports back from the hospital in Istanbul. For those not following along I had an almost emergency surgery of an abscess that got infected.

And it’s kind of a good news, bad news situation. I dislike the useless preventive care dermatologist who dismissed me even more now.

The good news is that nothing malignant or cancerous is going on. The bad news is that the abscess was a gnarly mix of acute and chronic inflammatory issues that turned from a basic case of folliculitis (albeit 3cm deep so required slicing) to a nasty MSSA case that is resistant to the doxycycline typically prescribed. Yay.

Didn’t know hairs could grow sideways and frack your tissues till they produce a juicy abscess.

A little synopsis of the reports thanks to our favorite LLM Perplexity analyzing the reports with the additional context of my health history, recently bloodwork and current medical regimen.

  1. Pathology Report Review
    Gross Description
    • Multiple grey-white tissue fragments, largest 0.6×0.3×0.3cm.
    • Specimens from the excised lesion.
    Microscopy
    • Neutrophilic (PMN) inflammatory exudate on surface, consistent with acute infection.
    • Proliferative vascular stroma, frequent erythrocytes, and mixed chronic inflammatory infiltrate (suggesting ongoing/recurrent inflammation).
    • Fibrinous exudate, abscess cavity, active chronic inflammation, granulation tissue: typical of a maturing or organizing abscess.
    • Panniculitis: inflammation extending into subcutaneous fat.
    No evidence of malignancy was found.
    Interpretation: This confirms an abscess with active, mixed (acute-on-chronic) inflammation and granulation, but no neoplastic (cancerous) changes.
  2. Microbiology Report Review
    Culture
    • Growth: Staphylococcus aureus (methicillin-sensitive; MSSA)
    • Sensitive: Erythromycin, fusidic acid, linezolid, teicoplanin, tigecycline, trimethoprim-sulfamethoxazole.
    • Moderate: Levofloxacin.
    • Resistant: Tetracycline.
    Gram Stain
    • Numerous leukocytes and Gram-positive cocci in clusters, confirmatory of acute bacterial infection and consistent with S. aureus.

So the doxycline and indeed any of the basic tetracycline types I’ve been taking are useless. The extra five days of Augmentin were all for naught after I finished the Cipro. Thank goodness for topical antibiotic I am using is fusidic acid.

I’ll be moving to erythromycin orally and hoping for the best as once I finished the Cipro I started Augmentin which seems to have been functionally useless as a holding pattern antibiotic based on this report.

I’ve had a systemic staph infection before and it’s no fun. I’ve done IV antibiotics and I don’t know if I’d like a repeat. It’s my hope that Erythromycin does the job from here.

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Chronic Disease Medical

Day 1660 and Upchuck

I’m a week out from an unexpected “do it immediately, yesterday preferably” surgery on a cyst that went from “watch and wait” advice to hurry before it is a “septic crisis” faster than clearly the first doctor expected.

It’s a long story and if I felt better I’d link up all pieces in the two month saga of failed preventive care that had me flying into surgery to get sliced open. I’m not sure this IL-17 inhibitor is working out for me. Sure my inflammatory numbers look great but I can’t be constantly managing infections that require a scalpel.

I had a week of Cipro and the wound is looking good. I’m still waiting on a pathology report but I’m guessing it’s not arriving today. I am praying that I don’t need a follow up antibiotic but also I’m afraid to not be on one while I still have an open wound knitting back together.

Also I’m hoping for my tendons to remain strong. A fun side effect of Cipro is a much increased risk of tendon injuries for literally months afterwards. No intense workouts for me till the fall.

I took my last dose of Cipro this morning and within a few hours I was losing my lunch. Well my breakfast really. Don’t just eat acidic kiwis after a week of antibiotics folks. I am fairly sure none of the antibiotic came up but who really knows.

I am swinging from dumb medical calamity to stupid medical crisis every other month as I attempt to correct biometrics and optimize different variables. All I achieve is a the occasional small incremental grinding gains for my troubles. Maybe that’s what caused me to be sick to my stomach. Despair makes you nauseous right?

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Chronic Disease Medical Travel

Day 1657 and The Boredom of Summer Surgery

It sounds a little ungrateful to say I’m bored, as I sit comfortably in a nice hotel bed with books, Netflix, room service, and a nice view but I am bored and a little miserable.

Antibiotics, discomfort and surrealism are a challenging combination for existential stability as it turns out.

I can’t do much beyond sitting still and getting up once an hour to walk a couple hundred steps. I have been instructed not to sweat so I can’t go outside much. Even in the evening with a breeze, it’s still hot enough to break a sweat and this is an infection risk.

Beyond sweating, you can’t disturb you wound healing in anyway so I can’t exercise. At best, I can do some light yoga and stretching. Short walks indoors are OK so I can’t walk the hallways but that makes staff nervous. I keep to myself mostly.

Most tragically for me as we don’t have a bathtub at home is that I can’t take a bath or submerge myself in water for weeks. So the gorgeous bathtub is simply taunting me. I love a good tub and this is a great tub.

No submersion in water for two weeks minimum

It’s even worse when I stare out at the beautiful pool. That is obviously an infection risk as well. No splashing around in Norma Kamali pretending at social aspirations. Oh yes Istanbul is the new Florence in July haven’t you heard?

At least the nearby Bosphorus is packed with cargo ships, I have no temptation when seeing the beach to have a dip in the water. I doubt diesel fuel is good for healing.

The highlight of my day is the hotel lounge’s breakfast where there are charming varieties of very Instagram friendly food. It is still in a hotel lounge but it’s a beautiful novelty.

Tea, pomegranate juice and rose honey yogurt

I’ve been annoyed by the variety of influencers who are also healing around me. There are any number of different plastic surgery and aesthetic patients in the guest mix.

If you think a week of blogging about an emergency sepsis slice job on some indelicate bits, imagine how weird it is to see an entire family getting plastic surgery and their daughter (I think?) is live-streaming most of it.

I’ve seen more puffy lips than I have fish on this trip and that’s my fault. I don’t have the strength dress up or walk to the Michelin starred seafood restaurant. Maybe that’s more for the elective surgery types and the emergency infection girlies have just enjoy the tiny yogurts.

That’s almost a bagel and lox set up right?
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Chronic Disease Medical Travel

Day 1654 and Post-Operative Exhaustion

As I slowly walked myself out of surgery yesterday, I thought to myself “I actually feel much better!” And I genuinely did.

If you have a gentle stomach, maybe stop reading here. I’m fine. I’m on my way to well. And this will be graphic.

I do feel dramatically better having had the “slouching towards septic” abscess drained of infection as well as removal of the initial pearl style irritant (a 3mm deep entirely horizontal hair growing not up but sideways like an underground fracking tube).

I appreciated having the walls of the abscess pulled out bit by bit in a delicate curettage by my silk sundress clad physician. It was all a success.

But post operative care is hard? I’m a mess. I’m exhausted, loopy, and the hotel’s guest services are concerned enough that they are doing me such kindnesses like sending up tea and maxipads. Turkish hospitality comes from a place of genuine kindness and I need that right now.

It’s been a long journey of stupid to end up in Istanbul to get a smart fix. Going from a squishy movable almond sized lump without any pain six weeks ago to a hard plum sized lump was disconcerting enough. Especially having done my damned preventive care visits with the useless Dr Oetkin in Montana.

Have had two days of prodding, poking, squeezing, moving and ultrasounding done in the Mediterranean, I was swollen, feverish, and all hurt to the touch. I was afraid.

How did I get here? How had my next generation IL-17 managed to cause me so many negative side effects even as I was doing better across all biometrics and across quality of life metrics?

No wonder the doctor in Istanbul was so concerned. All the previous doctors had done was make my situation worse though inaction and delay m, and then the action they took made it worse.

Now I have recovery ahead of me. Last night as I went to pee, I realized why they had padded the upper areas of my underwear with maxi pads. I’ve got no discharge downstairs but on the upper bikini area there was no such luck.

I only needed one stitch to close up thanks to the careful work of the doctor, but a lot of goo came out during the surgery drainage and I was warned there was still more to come, though it would taper off.

I gently washed the area with a cloth and antiseptic soap before application of antibiotic cream (my third type of antibiotic). I gasped as I saw the first lightly red sticky watery fluid gush out rapidly around the stitch. It was so fast and there was so damn much. Bodies are disgusting what else can be said?

I mopped up with a clean moist towel and applied a thick layer of antibiotic cream, but I had learned the deflation of the abscess wasn’t quite done. The swelling, I was told, would take a week or more to full abate.

I’ll be sleeping this off for the day but if you are in Montana with an autoimmune disease and need a dermatologist I’d recommend you stay away from Dr. Tara Oetken at SkincareMT. Without her hasty heuristics and lack of conviction I wouldn’t be in this mess.

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Biohacking Chronic Disease Medical

Day 1650 and Trying to be Heard

I don’t think of myself as someone who struggles to be heard. I am loud, I speak up, I have a large social media platform and I don’t mind being impolite if I need to be heard.

And yet, the incidents where I am ignored, dismissed, or even outright insulted seem to be on the rise. I follow the rule of three assholes generally so I have to wonder if it’s me, but nothing makes you wonder more than getting really bad basic medical care.

I am attempting to get a cyst (or abscess or infected lymph node or whatever the heck it may be) diagnosed in a country where I don’t speak the language.

No one can agree what doctor is right. It was a gyno who sent me to a dermatologist who wanted me to go back to a gyno last month.

Now I’ve got a gynecologist who wants me to repeat the conservative management program I’ve been doing for months.

Which hasn’t worked, but she is implacable in her iron lady demeanor. Bactine and warm soaking. Maybe she does understand the immune suppression part? Thankfully I come with receipts.

I carry my patient charts, a synopsis of my diagnosis, the side effects of drug treatment and a short “why I am here and for what.”

A radical change in size & texture on a cyst with no response to antibiotics is exactly what the last four doctors told me to watch for as it signals a need for active management.

Now this shouldn’t need years of bloodwork (which I brought and charted for them) or a paragraph on high risk patient needs or a history of my main medical issues and the rationale for why I am requesting imaging. It’s an abscess that’s growing so figure out what kind, remove it and then we figured out why.

And yet it does require all of this to get anywhere. I spent 5 hours in a doctors office today and two hours in one yesterday.

I’ll waste another two days while they will run new bloods when I have a fresh set from a week ago. And still they fought me like hell on imaging.

Which is the only way to decide on the course of treatment. Instead I should do warm compresses and iodine for a month (sorry the first four months not count?) The temptation to unleash is overwhelming.

It was a fight. I got an ultrasound. And I did get a diagnosis and it needs to be carried out asap. Figuring out a doctor and a recovery plan I trust is going to be hard but that’s a tomorrow problem.

Abcess. Filled with bad shit. There is a hair in it acting the part of irksome pearl. 17×13 mm diameter. 3 mm from skin so it’s not small.
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Biohacking Chronic Disease Medical

Day 1649 and Physician Heal Thyself

I’ve been having some side effects from my new biologic injection Bimzelx. Whenever I travel, I do a spate of doctors appointments before I leave so I can be adequately prepared for likely scenarios. Be prepared is my motto.

I had gone to a dermatologist a month ago to check on a cyst or swollen lymph node in an awkward spot. It’s on my pubic bikini area so I’ve been playing hot potato with dermatologists versus gynecologists.

The dermatologist appointment was so horrifying I’d recommend you stay away from Dr. Tara Oetken at SkincareMT as it was such a degrading and frankly useless experience. I do fully endorse their cosmetic practice and Nurse Addison.

I ended up at the dermatologist as the gynos were like “uhhh it’s on the outside and involves no reproductive organs so you need a dermatologist” and then dermatologist was a bit “its close to your vagina ewwww icky scary did you go to the gyno?”

Yes dear that’s how I got sent to you, this ain’t no picnic for me either.

I was embarrassed but the cyst/enflamed lymph node had been unchanging for a few months (not growing or differing in texture but malleable & squishy). So I checked in, was mostly embarrassed, got no direction that helped and left feeling degraded.

Given my previous issues with meiborn gland infections on my eyelids, I’d been instructed to keep a close eye any side effects common like folliculitis that is common Bimzelx. This was clearly a complex side effect that I’d had multiple issues with all year. The next step was imaging but I could get zero sense in the very short visit of whether or not the doctor felt it was warranted. “It’s up to you” sounds nice until you want a doctor to give you their professional advice.

Well now I’m in a foreign country and the almond sized squishy bit has ballooned in just four or five short days to thrice or quadruple its size, it’s now quite firm and not easy to move around or squish and I’ve got to do the same dance all over with doctors ago don’t speak English.

Thankfully I have artificial intelligence and an interpreter. I’ll get the imaging ultrasound done (AI says get it done immediately based on the differential it did) and then we can see if it’s a cyst or a lymph node that needs an I&D. I started antibiotics 3 days into this ballooning and it has done little to fix it so let’s find out. Hopefully I don’t need someone lancing and squeezing out stuff in a foreign country. But if I do need that I may pop a flight to Istanbul for that.

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Biohacking Chronic Disease Medical

Day 1629 and IL-17 Changeover Results

I need to do a better job at tying up loose ends. I’ll bring up a change and then forget to do updates until I’ve concluded the experiment.

My January health reboot included changing my IL-17 biologic injection (moving from Cosentyx to Bimzlex) in the hopes of reducing my soaring inflammation markers has its last loading dose today. I take it for my psoriatic arthritis and ankylosing spondylitis.

I got a fresh round of bloodwork done last week and am pleased to have seen my CRP & my sed rate at the best point in some years. Subjective metrics like pain and energy are usually leading indicators for my erythrocyte sedimentation rate and C-reactive protein coming down. And that is my priority with pharmaceutical choices and holistic ones.

I have had a lot of negative side effects that were new to me that did show up during my Bimzelx transition. I got a meiborn gland infection on my eyelid twice. I had to get it sliced and lanced TWICE! And I took two rounds of antibiotics (which I love as I feel terrific when I’m on doxycycline or amoxicillin).

You’d think needing that down while in Istanbul would have been scary but no it was informative and fun. And I was able to learn more about hyperbaric chamber oxygen therapy which is the next big adventure coming up.

So it’s looking good for Bimzelx even though I’m not wild about how my immune system has reacted. The eyelid stuff is scary. I’ve had folliculitis in odd places so I’ll need more topic antibiotic washes presumably. My scalp has not taken it well.

Other oddities of note. Bimzelx also hurts way more than any other injection I’ve ever gotten in my entire life. I’ve done methotrexate, all the hormones for egg retrieval, multiple biologics (Coesyntx and Humira) and nothing comes close to this kind of pain. It’s a big vial and an auto-injector so you have no control so you must muster up the willpower to hurt yourself for 45 seconds of burning pain. Because you can’t restart you’ve got to do it. I scream. It’s bad.

It does appear to be working so we shall see how the change from loading dose to regular every two month maintenance dosing goes. I don’t know if I have multiple weird infections a year in me but I do like being able to exercise and have more work capacity. I’d say on balance it’s worth it for me.

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Chronic Disease

Day 1627 and 12 Hours

I went to bed yesterday around 3:30 or so. Oops. I could barely write a post as I was struggling to stay awake at all. I did three short paragraphs and tagged it and said good enough.

A long night of poor sleep

My sleep was not peaceful or restorative but at least it was long. The night before I was up late (ok 10:30pm or so) and I struggled to fall asleep.

Alex’s birthday party on Saturday was enough to wipe me out so badly that on Sunday I couldn’t stay up past mid-afternoon. Pathetic yes but not surprising.

I recently did a big round of bloodwork and was thrilled to see my inflammation is down significantly but I have something called inflammatory anemia. So maybe a contributing factor to my exhaustion. There are a number of odd areas that need some attention especially in my endocrine system.

The Bimzelx switch is in its 4th month so almost through the loading dosing. I have had awful side effects but the code biomarkers of CRP and Erythrocyte Sedimentation Rate (ESR) are significantly improved.

I still have all kinds of weird pains and compensatory biomechanical problems but I’m feeling moderately optimistic. The next steps are around the corner. And hopefully I get more deep sleep and REM sleep before I tackle it.