Two and a Half Years

 

Readers who have been paying attention have likely been wondering what happened to my production over the past two-plus years. Well, this essay is part of the answer.

 

I resisted writing it for a long time. In the end, I decided I wanted to pay something forward, like others, people I don’t know personally, paid their experiences forward to me by posting information I needed and wanted.

 

In that, this post will hopefully serve two purposes. First, to inform the curious what’s been going on with me. Second, to provide information that others in a similar situation might find useful, helpful, or at least empathetic.

 

So, buckle up, buttercup. It’s a long and winding road.

 

 

Background:

 

This started back in December 2022 when I got sick just before Christmas. Nearly as sick as I’d been in March 2020, when I am pretty sure I had Covid. In 2020, I was two hours away from a trip to an ER with breathing difficulties that thankfully eased just enough to stay home. This time I was sick enough to take a home Covid test, which came back negative. But fun fact, the particular test I took has a false negative rate of 15% under ideal circumstances. So, it’s very possible it missed something.

 

It took me a couple of weeks to get by whatever that was. But by then, other seemingly unrelated symptoms had started to emerge. A discomfort in the lower right quadrant of my abdomen that slowly grew into an ache, then a pain. A pain that again almost sent me to an ER, but once again resolved just enough not to go.

 

Then came a change in bathroom habits, which was somewhat controlled after ten days by adding more fiber and prunes to my diet. Although suddenly changing from being clockwork regular to having to plan my mornings around that schedule for the next year or more was a distinctly undesirable development. I also lost 5-7 pounds in a week without trying and without changing what I ate. (Over the next two years, I lost enough more to border on being underweight for my height.)

 

By a couple of weeks in, I knew I needed to see a doctor. But timing is everything. My primary of thirty years had just retired at the end of December. He was a sole practitioner and had designated no other practice to take over. So, I started calling around to offices that my insurance said accepted new patients, starting with the ones with decent ratings. The first one I tried that looked promising had a ten-week wait for an initial appointment. The one I settled on was eight weeks. So, I resigned myself to plowing along and going to an ER or urgent care if things got bad. Which, as it turned out, may not have helped much, but more on that later.

 

By the time I got in to see my current primary, my symptoms were pretty much as follows (consults notebook). The pain in my lower right quadrant resolved to a near-constant ache, sometimes a stab (enough to drive me to my knees), sometimes a burning sensation, sometimes a spasm, sometimes warm, tender, and/or swollen. It started about twelve hours after I ate, though I could feel something at two hours. Eventually, I (and my doctors) could feel one to two firm tubes through my skin down there with my fingers, nearly constantly. (Even now, I can occasionally push a lump of something through).

 

That quickly evolved into not being able to sit upright, like in a chair or in the car, for more than about fifteen minutes before feeling like something inside would get cut off. It would swell, press, develop pain, and make me feel generally off and jack my BP, which again comes into play as this unfolds.

 

Adding to that, I developed a 2-3 day cyclic feeling like I was fighting an infection or a virus (over the next months to years that would slowly extend first to a 5-day cycle, then 8-10, but let’s not get ahead of ourselves). I’d feel clammy, warm but not highly feverish, slight chills, shaky, mildly nauseous, mentally drained, which eventually turned to brain fog most of the time and fatigue that could progress to a sudden a pass-out level of exhaustion, especially after exercising even mildly. My saliva tasted different. My sweat and urine smelled different. My concentration and memory packed up and headed south, taking my reading and writing along for the ride, and for a lot of the duration.

 

Because that wasn’t enough, my sleep schedule went to hell as I’d wake up in the middle of the night with my mind buzzing and not wanting to get back to sleep. Then at times, I couldn’t fully wake up or felt detached. I crashed almost every afternoon, hard, for an hour or more at a time. As an added bonus, my hands and feet began to tingle.

 

Finally, I started developing rotating food sensitivities that had never been there before. About the time I thought I’d identified one, it would change to something else. Foods I’d never been sensitive to before, some of which were staples in my diet.

 

The best description I heard from my primary was my symptoms were “unique”.

 

 

Ground Rules & Disclaimers:

 

First and foremost, I am not a doctor and have no intention of giving anything resembling medical advice. All I can do is relate my tale of woe in case someone else in a similar situation might find the information enlightening.

 

I have told my doctor on more than one occasion that I used to perform debug for a living, just in electronics and software rather than bio-chemistry. But debug is debug. And, if you think doctors have egos, you’ve never dealt with hardware or software engineers, especially ones with military backgrounds. From hard-won experience, I don’t intimidate easily, and I know how to press my case. Although I will say, you should to be careful with my debug mentor’s advice of cutting a problem in half because doctors are trained to use razor-sharp implements and might take you literally.

 

In all seriousness, in our current medical system in this country (US), and a few others around the world, you have to be your own advocate. I am fortunate that my doctor listens, generally takes her time, is open to new ideas, and is someone I can work with, though I currently pay for the privilege (she went concierge medicine in the middle of this, and I didn’t want to change horses midstream). I am also fortunate that I know how to do research, to read a research paper, and have at least an inkling of how to interpret its conclusions.

 

That said, in modern US medicine, doctors almost exclusively focus on their specialties with very little coordination or consulting where those specialties might overlap or interact. Ideally, a primary is supposed to do that, but in general, they just act as a gatekeeper and switching agent between specialties. You’ve never had fun until you’ve had two doctors point at each other as being responsible for the cause of your symptoms. With me in 2005-2007 (a different mystery virus) that was an allergist and a GI. My doctor relates seeing similar between cardiologists and nephrologists.

 

The reality is that many specialties interact in unexpected ways. We are finding this is increasingly true in GI, with your microbiome affecting everything from weight loss/gain to diabetes to depression to perhaps autoimmune diseases. As a weird aside, during all this I caught an article about a guy doing DIY fecal transplants from his mother (no procedural details, thankfully). While they cleared up his issues, they also led him to experience symptoms of menopause, which his mother was going through. Yeah, this gets spooky, like quantum mechanics weird.

 

Which brings me to my first ground rule. All my research has been verified by papers on NIH. Which means by federal regulation, the studies had been peer reviewed. That’s important. Although it doesn’t guarantee the results or conclusions, it does give you a big leg up from just trolling the internet or YouTube for medical advice. One caveat, all of this was done before the recent regime change at NIH and CDC so by the time you read this, your results may vary.

 

Some of these papers have very small N-numbers (sample sizes, or participants). Some are/were cutting edge enough to not have been replicated yet.  Some may form a small piece of a much larger picture as we move forward. All this is how science works. It takes time, money and dedication.

 

As an aside, during one of many follow-up appointments, I had a very interesting conversation with a doctor about how long it takes to go from an initial small study (like in papers I cite) to replication through other studies, to trials and finally to FDA/CDC approval of a given treatment. Ten years and many millions of dollars.

 

That’s a long time. Which is some of why I’m willing to be a human Guinea pig with these protocols. My philosophy has been that if a potential treatment is low risk, I’m willing to run a study where N=1, as my doctor likes to say. Risk assessment is the key. That not just how likely or unlikely an adverse outcome may be but also how catastrophic it might be should it occur even if it’s low probability. Key safety tip, damaging or shutting down major organs is generally considered bad, Ray. So don’t try that at home.

 

In general, I try to include links to the papers where I still have them. Again, I am fortunate in that I am married to a scientist who knows how to read papers like these even though they are not her field, as well has having a few other bio-trained scientists and PhDs as friends who I can tap when looking up the big words doesn’t suffice. I’ve handed more than one abstract to my doctors where I felt a sanity check was in order. So far, none have fired me as a patient, though one or two may have wondered aloud whether anyone screens these patients.

 

Last disclaimer. Almost all individual bodies react differently to various treatments. Some respond to certain things where others do not. So even in the cases where we understand certain bio-chemical mechanisms, there are few guarantees. For me, that’s meant being willing to experiment, though as you’ll see, I am not strict on isolating all the variables like a true PhD researcher. I’m sure at least one friend would fail me on my lab technique. But then, I didn’t earn the nickname The Morganizer for nothing back in the days when anything written in my notebook was taken as gospel.

 

I try very hard to make sure what I’m trying is evidence-based. Worst case, that might be from a very small, but documented case study. Regardless, as I’ve gone through this, I’ve gotten a number of medical recommendations from well-meaning friends. In general, I’ve learned pay very little attention to attractive young MDs, men or women, with flashy sites that are trying to sell me something, usually their patented supplement/probiotic remedies. I pay less attention to well-spoken individuals with YouTube channels, especially if their credentials include something like being a DC (Doctor of Chiropractic), or even an MDs if they still recommend (or ever recommended) Ivermectin as a Covid cure. I do a general intel search to understand who I’m dealing with. Cui bono (who benefits) is my mantra. Always understand who you are dealing with.

 

Finally, where I talk about taking various supplements/probiotics, I try to find ones that are certified both with Good Manufacturing Processes (GMP) and third party tested for content at a minimum. I want to be certain I am getting what I think I’m getting and I am not getting what I don’t need or want. It’s the Wild West out there, so be careful.

 

 

Preliminaries:

 

The first time I met my new primary, I was lying on the floor of her exam room because it was the only way I was comfortable. Her first words as she peered down at me were, “you’re much braver than I am.” Talk about me making a good first impression.

 

I made my second impression by handing her a sheaf of records from my previous doctor, including from the physical I’d had nine months before (six months before this started) that showed absolutely no issues. I also passed her a bunch of tests from 2005-07 when I’d had a similar mystery virus that never got identified or diagnosed but eventually resolved with time and an unconventional treatment. Then I started ticking off symptoms and items of information from my notebook, including a complete GI history.

 

“What do you do for a living,” she finally asked.

“I’m a writer,” I answered.

She scowled, “No, that’s not it.”

Confused, I added, “before that, I was an engineer.”

“I knew it! Only engineers bring this level of records and documentation to an appointment.”

 

From then forward, I’ve had to reinforce to her that I’m a writer, and only a reformed engineer. She still doesn’t quite believe me, even after I handed her my business card and directed her to my fiction.

 

She started by ordering tests. A CBC and a metabolic blood panel. An abdominal CT. And because of the sudden change in bathroom habits, a colonoscopy, which I’d never had. She also added a test for neuroendocrine tumors (5-HIAA, normal), and for autoimmune markers (negative). Plus, the 24-hour urine sample that she’d had to do while she was pregnant with a house full of guests, so I suspect she just wanted to share the joy with that one.

 

This began a long line of tests looking for something, anything to treat. Over the next two years, I had 3 CTs (CT, CT-A, CT-E), abdominal x-rays, an echocardiogram, a swallow test, a colonoscopy, an upper endoscopy, and two MRIs. Plus, numerous blood tests, stuff esoteric enough that she had to look up the billing codes for them because she’d never ordered them.

 

The initial blood panel came back normal, in line with the one from my physical the previous year.  The only thing that came up off was one high(ish) white count possibly associated with allergies, though in hindsight possibly from something else. The CT said no appendicitis and no hernias. The colonoscopy was clean as a whistle, not even a polyp to snip. And he got a good visual on my appendix and slightly beyond, which looked fine.

 

So, a little more on that last procedure, which is no one’s favorite medical test. I had a decent GI, or so I thought, because he was the one my wife had seen for a colonoscopy several years before and we both like him and his office. Well, apparently shit changed while I was in prison. In the intervening years, his office had been incorporated into a large local medical group, and had mainly become a colonoscopy mill. When I asked him after the procedure what the next steps were, his exact words were, “I’d talk to a surgeon”. !? About what exactly?

 

Thankfully, my new primary had an excellent recommendation for another GI who quickly became my favorite doctor. More on him in a moment.

 

Before I could get to him, I hit my nadir. One Saturday night I started feeling off after dinner. Way off. Like something was desperately wrong off. I finally told my wife we needed to go to the ER. Where they found my BP had skyrocketed to levels I’d never encountered before.

 

That resulted in a four-day adventure in a private room (all the rooms were private in that hospital) with a reasonable view out the fourth-floor window. Part of that adventure stemmed from their entire nuclear-medicine staff quitting over a dispute on working conditions the day before my happy ass arrived. That was less than ideal because for the cardiologists to release me, they normally would have conducted a cardiac stress test. But they had no one to do it.

 

The cardiologists were a fun lot. The first one, on call, was a young woman with tats and piercings who was very communicative and personable (unlike the last cardiologist I’d seen in 2005 who stabbed me in the groin with no warning and no anesthesia). I knew if I needed a cardiologist, she would be the one I’d pick.

 

The regular staff cardiologist, who I saw the next day, charged into my room and without preamble, informed me about the nuclear-medicine staff which he had just been blindsided by. “I’m pissed, and you should be, too”. Uh, dude, I’m in the hospital because my blood pressure spiked without warning. Not sure that’s the advice I was expecting. Despite that, I liked him because he was looking out for me the best way he knew how. But so were a lot of people, some in defiance of a system that didn’t entirely support them.

 

In fact, a lot of medical people were looking out for me, which was quite heartening. My primary had privilege at the hospital so saw me after the weekend (her on-call partner admitted me and saw me that Sunday). Her first words when she came into the room that Monday regarded a complaint about the patriarchy. Which I found quite refreshing and endearing, as well as quite trusting, with her not knowing me that well. She also didn’t blink when I told her my wife had snuck in Imodium from home rather than jumping through the hoops of getting it through hospital channels, which would have included her. Not even an eye roll or a lecture.

 

As well, I interacted with two nurses who were equally interesting. One was from Ukraine, who with a little encouragement shared a great deal of her family history with me. The other was super excited about seeing the D&D movie that was premiering that weekend and she planned to see with her daughter. “You’re probably too young to remember D&D,” she said to me. Oh, sister, you have no idea.

 

Long story short, in the course of those four days, I ended up the aforementioned CT-A, an abdominal X-ray, an echocardiogram, a swallow test (the tech about fainted when I told her I’d tasted worse than the contrast sample), plus a radiologist who did me a solid a solid because I talked to him like a real doctor. He found a rogue staple from my gallbladder surgery two decades earlier that had gone walkabout. And he was excited to do it.

 

The cardiologist and I got into a debate about my BP. It had always run in the high end of the normal range but never needed an intervention. He didn’t believe that until I said I had a decade of records proving it (that engineer thing again). I understood things can change, but when they change that suddenly, it usually points to something else as a cause. Fine, we’ll see. Since he couldn’t do a stress test, he ordered a CT-A (a heart CT). When that came back perfect (no obstructions or blockages), he told me to go away. Like not even a follow-up go away. If you’re good, I’m good.

 

But when they finally released me, we still had no answers. As an aside, it was the first time I walked out of a hospital rather than rode out in a wheelchair. When I asked the D&D nurse about that, she just looked at me and said, your legs still work don’t they? I so liked that woman.

 

When I got home, our two cats, Mara and Nyala, were pretty happy to see me. Like dude, where have you been? Why didn’t you tell us you were camping out? We thought you’d run away from home. But aside from my wife and my aunt, they were pretty much the only ones who noticed I was away. That’s as alone as I’ve felt in my life, which with my life is saying something.

 

And right about that time, my uncle in North Carolina died. I couldn’t go to the funeral to support my aunt, who means a great deal to me, because I couldn’t sit on a plane for the time it would take to get there. She understood but I was heartbroken.

 

Then a few months later, Mara died. Digging her grave was more than a challenge.

 

Somewhere in there, I had to tell someone close to me, “I’ll try to be less sick.”

 

 

GI:

 

Now we’re starting to get to it. (Finally, says the one dude still reading).

 

After my earlier GI experience, and really the one before that in 2005 (longer story), I was somewhat apprehensive about seeing the new one. Aside from being recommended by my primary, he was also recommended by a friend who had seen him for a while. And as I said, he became my favorite doctor. The first time I said that to him, he didn’t know how to react. When I said it in front of his staff, I think I embarrassed him horribly.

 

Based on the sheet of symptoms and history I handed him (I started doing that with a number of doctors for ease and clarity), he ordered three tests right away. He would have ordered four, but previously, I’d had a breath test for H. pylori ordered by my primary (negative).

 

The first, based on the tingling extremities, was a B12 test. That came back with a low reading so he prescribed sublingual B12 which helped that pretty quickly though the tingling didn’t completely go away. One shot, one kill.

 

On that, a year later, we repeated the test with an entire B-vitamin panel based on the recommendation of a friend of a friend. First, the B12 came back normal even though I’d stopped taking it about a week before the test (though my favorite doctor said I might have banked some in my liver). But B6 came back exceptionally high. Ok, weird. That only happens when people are taking mega doses of it, which I was not by any stretch. Not even 100% RDA in a week. My primary thought it could have been a lab error (possible) so we repeated that portion a month later after taking nothing. Normal again. Very strange. My working theory is still that there was something related to production and absorption going on somewhere in my GI track.

 

But of course, that led to an insurance dispute with the lab that took months to resolve, although it did eventually resolve in my favor after we talked to the right manager. But it delayed another test that we’ll talk about soon.

 

The second test he ordered a SIBO test (small intestine bacterial overgrowth). That one was more complicated because insurance only partially paid for it and only one lab in Arizona did it. But I signed off, and he handed me a box with balloons and fun instructions. It also came back positive for methanogenic archaea. Two for two.

 

The front line of treatment there was a somewhat serious antibiotic, Metronidazole, for a number of weeks. This resulted in my one of my first trips to NIH looking for more information about it and SIBO. Where I found studies that indicated combining Metronidazole with a probiotic yeast called. S. boulardii increased its effectiveness substantially. Here the teaser:

 

Effectiveness of Saccharomyces boulardii and Metronidazole for Small Intestinal Bacterial Overgrowth in Systemic Sclerosis

 

https://pubmed.ncbi.nlm.nih.gov/31549334/

 

S. boulardii is an interesting little yeast. It was first discovered in SE Asia in the 1920s by a French doctor who noticed that people who had ingested it from the skin of the lychee fruit they ate were less likely to contract cholera, the reason he was there. It’s been around a long time, somewhat studied and generally recognized as safe, so I tried it with my prescription. I also passed on the research to my favorite doctor who read it and seemed to appreciate it.

 

The good and bad with methanogenic SIBO is that if you kill it, it generally stays dead, but it can be stubborn. As was the case with me. The combined therapy knocked it down but not quite out, which I’d been warned was a risk. His first choice for an antibiotic was Xifaxan (Rifaximin) but that wasn’t FDA or insurance approved. But six months later, after these symptoms didn’t fully resolve, that’s where we ended up.

 

And this is where he became my favorite doctor. Xifaxan without insurance is about $2k for a 30-day course of treatment. I’d already looked into alternatives, like ordering it with a script through an undisclosed but safe and regulated third country. He didn’t blink at that. But then he said, hang on a second. He disappeared for about five minutes and came back with a brown paper bag filled with samples. Enough for a full course of treatment. Up to that moment, no doctor had ever paid me, especially $2k. Wow. Merry Christmas a few weeks early.

 

Which is where another trip to NIH revealed another interesting accelerant to an antibiotic. In this case, partially hydrolyzed guar gum, although only in combination with Xifaxan. Alone, hydrolyzed guar gum can make SIBO worse. Fair warning. I passed that abstract on to my GI as well.

 

Clinical Trial: The Combination of Rifaximin with Partially Hydrolyzed Guar Gum Is More Effective Than Rifaximin Alone in Eradicating Small Intestinal Bacterial Overgrowth

 

https://pubmed.ncbi.nlm.nih.gov/20937045/

 

That round did the trick. A lot of GI stuff calmed down, but not the other symptoms, like food sensitivities and the swelling and ache. So, progress?

 

The final initial test he ordered was a CT-E (abdominal CT). One of my markers for knowing how far I’ve come back is remembering the half hour ride to the testing facility being the longest I could ride in a car, and that with the seat fully reclined. Once there, they sent me back to the recliners where they usually have pregnant women wait (none there) so I could sit comfortably. That also came back generally negative, but with a small bowel fecal sign (SBFS) that indicates there might be a transit time issue or damage to the vagus nerve, which again, comes into potential play later.

 

Initially, he gave me a prescription for Hyoscyamine, an antispasmodic and quasi-paralytic that might help with some of the abdominal ache and pain. It did but at a cost. It’s in a class of drugs called anticholinergics, which includes Benadryl and some OTC cough suppressants, all of which slow digestive transit times, which was pretty much the opposite of what I needed. Plus, I’d been using Benadryl as a sleep aid many nights. So, I stopped both which seemed to help some.

 

On the food sensitivity side of things, over the first six months of seeing him, I tried a low FODMAP diet with no effect. Some foods they say are good for that made things worse while others they say to avoid made things better. I tried lactose-free with no effect. I tried a gluten-free diet. That definitely made things worse (which stunned my primary). Each of these I gave two weeks or more to be certain.

 

As another weird aside, at one point my primary recommended I see a nutritionist. Ok, about what, given I knew we eat better than perhaps 90% of the American population? She then delivered a rather standard lecture on trying to eat 30 plant-based foods a week, working up to it slowly. I did a quick count in my head by going through the fridge, freezer and pantry. 35-40 depending on the week. Plus, our bread and yogurt are both homemade. And I generally avoid excess sugar, salt and processed foods. We cook at home almost every night and have fish twice a week. Ok, never mind.

 

My next GI mission became rebuilding my microbiome after the antibiotics, which I’d been told could take six months or longer. Being somewhat impatient a year into this, I looked for ways to accelerate that. The first thing that came to mind was probiotics. A couple issues, though. One, I already ate live culture yogurt every day. Two, most probiotics you can buy either don’t colonize or don’t survive the trip to get where they’re needed. Three, some probiotic supplements can make SIBO symptoms worse.

 

Right about this time, a good friend sent me three GI books out of the blue. One described the whole GI system in terms an engineer with very limited college biology could understand. The second was a more general prescription for longevity by an MD (many of his recommended, but nonstandard, tests are performed by my primary in a wellness check each year). The third was I Contain Multitudes by Ed Yong, a well-respected science writer. A very worthwhile read.

 

https://www.amazon.com/Contain-Multitudes-Microbes-Within-Grander/dp/0062368605/

 

In it, he discusses probiotics, most of which confirmed what I already knew. But then he talked about recent research that quantified some of the strains that inhabit our large intestine, only three of which they’d identified in significant percentages. One of which makes up 3-5% of your output, and has been isolated and colonizes. Akkermansia muciniphila.

 

Which it turns out you can find on Amazon. So, another N=1 30-day trial l found that definitely altered something in a good way. The bathroom scheduling issues subsided and have mostly disappeared. I took maintenance dose weekly for a few months after that to make sure it got nice and cozy settling in.

 

The second probiotic recommendation came from a friend who is a microbiology PhD. L. reuteri.

 

Again, you can find it on Amazon. Or better yet you can get it from kefir, a yogurt-like drink. This one colonizes the small intestine rather than the large and has been pretty well studied for decades. Turns out you first get exposed to it in infancy from mother’s milk, with refreshers from other foods. More interestingly, it’s been dying off in the general population, for a variety of reasons.

 

Two months of that also calmed more down. So, another keeper.

 

There are several online recipes for making kefir yourself, though it’s different than making yogurt. Since we already made our own yogurt using store-bought Greek with five live cultures, we decided to try an experiment and added some live culture kefir to the culture mix before fermenting it. It definitely seemed to work, changing both the consistency and flavor of the final product. So, we’ll keep that up for our weekend yogurt.

 

A year after my initial appointment (after the antibiotic protocols), my GI also ordered an upper endoscopy because of the remaining food sensitivities and persistent ache. This ruled out H. pylori (again), ulcers, and a bile duct restriction. It also showed my pyloric stenosis surgery as an infant was holding up, as well a revealing a previously diagnosed hiatal hernia had disappeared. So, we’d looked a few feet into both ends of my digestive tract and only had about 20-30 feet left between.

 

By then, I was a year and a half into this adventure, with many symptoms still unresolved but the GI side of things generally better. Six months later, he cut me loose to seeing him only on an “as needed” basis.

 

 

An Easter Egg Hunt:

 

This is definitely not a desired method of debug in the lab. It’s basically just like it sounds, looking here, or here, or here, trying to find a problem. Aka a fishing expedition. Cast a line and see what bites.

 

Thing is sometimes you actually find something, or at least get a tug on the line.

 

Ok, dropping back in time a bit to a year into this adventure, just after the Xifaxan treatment hadn’t fully resolved everything (including some of the ache and discomfort in my lower right quadrant), my primary got it into her head that this could be a spine issue. I thought that unlikely, given I know what sciatica feels like and this wasn’t it. But she wanted an MRI to rule it out. Sure (even though that resulted in a lecture email from my insurance company, like I ordered it myself or could). Which of course reveled issues with my lower spine, most of which I knew about and hadn’t really changed.

 

As a result, she gave me a script for a Meloxicam, an anti-inflammatory, which given my GI issues, I was reluctant to take. Up to this point, I’d been taking turmeric (with black pepper as a required activator), which had helped reduce some of the inflammation but by no means all. Eventually, I did my due diligence and started taking the script, if nothing else to rule it out.

 

Meloxicam reduced overall abdominal inflammation but increased feeling flush (strong on second day, then reducing but cyclic again) and made the existing tendinitis in my right elbow worse (even though I was resting it). Worse? My primary was surprised. My other symptoms came back quickly when I stopped taking it. There is ongoing research regarding Meloxicam and long Covid at NIH, which may be relevant. But it wasn’t going to work for me.

 

So, I continued hopping down the bunny trail of other anti-inflammatories, starting with over-the-counter Naproxen (Aleve). That tore up my stomach immediately, so I stopped quickly.

 

Well, when I’d seen a cardiologist in 2005 for the mystery virus, he’d prescribed low-dose aspirin as a prophylactic, which was standard of care at the time (but no longer). So, I knew I tolerated aspirin well as I’d taken that for about a year without issue. So, I started it again.

 

The daily low-dose aspirin reduced my abdominal inflammation. As well, it reduced the amount of fullness in lower right quadrant, and reduced the ache in upper right side under ribs. I felt physically cooler even while exercising to the point of changing the AC thermostat and still feeling comfortable. Places that ached began to itch mildly. The mild tingling along nerves in my head and extremities reduced, down again from the B12 that I was still taking. Plus, a number of other minor changes to vision, skin, hearing, etc. My symptoms came back when I stopped it. But it had the same effect immediately when resumed (1 week later).

 

Whoa, did that provide some relief. Like outsized to the dose, it’s half-life or any expectation. It’s hard to overstate how much it changed. So, I started looking into why that might be. Which is when I ran across this.

 

A Central Role for Amyloid Fibrin Microclots in Long Covid/PASC: Origins and Therapeutic Implications.

 

https://pmc.ncbi.nlm.nih.gov/articles/PMC8883497

 

I’d already been thinking along the lines that this might be long Covid, or if not that some other post-acute infectious syndrome (PAIS), which is likely tightly related. We’ve known about PAIS since the 1919 flu. Since then, it tends to have changed names every 20-30 years as we’ve learned and understood more. Before Covid, it was called ME/CFS.

 

Remember earlier when I mentioned a lot of systems in the body can interact? Covid can create a lot of those interactions, as well as breakdowns that evidence in other systems. It is well understood it causes clots in various organs (which my mother died from), so microclots would make sense. Aspirin is a blood thinner that helps with clots. Eliquis (Apixaban) is a powerful anticlotting medication.

 

It is still my working theory that all of this stems from long Covid, though I have no proof other than meeting a number of symptoms categorizing it on NIH, which they now say qualifies without a formal diagnosis.

 

It also fit with the experience of my college roommate who contracted Covid about three months before this started with me. He ended up in the hospital for several weeks as they tried to get his GI tract working on its own again. Hmm.

 

The interesting thing here is that any microclots would be unlikely to show up on scans. The resolution of a CT scan is around 1 cm. For an MRI, that goes to 1 mm. Capillaries are even smaller. Which presents a problem because most doctors want a formal diagnosis before they try anything. They lean heavily into their “do no harm” oath. Fair enough. But it was intriguing, especially given the impact of the low-dose aspirin (which I still want to call baby aspirin though no one has for a long time).

 

Another interesting aside. I mentioned that in 2005-2007 I had a mystery virus which evidenced suddenly with several similar symptoms, including sudden weight loss, food sensitivities and fatigue. That time, I ended up with the allergist and GI who each pointed to it being the other’s problem (unhelpful), and a cardiologist to rule out any heart issue with the fatigue. As I’ve said, he prescribed low-dose aspirin which I took for a year and generally helped some, though it shouldn’t have. In the end, that adventure got fully cleared by a preemptive H. pylori treatment which was relatively new and took some convincing on my part to get my doctor to try. Remarkably similar events.

 

Armed with all that, I did a bunch more research. My doctor was reluctant, to say the least, about replicating that particular protocol, especially the Eliquis. I likely could have done it without her, though I preferred to do something like that under medical supervision, so I resisted the temptation. But I did look for other ways to replicate that study and other possible long Covid protocols, which she helped with. More on those next.

 

 

Weird Protocols:

 

Before we get to the final treatment, let’s go through some of the other weird protocols I’ve tried and why.

 

The first was one proposed by my primary for redcuing inflammation and possibly long Covid, a daily combination of quercetin (500mg/day), zinc (25 mg/ day) and vitamin C (500 mg/ day). Looking into quercetin, I found a number of studies on NIH. The protocol I went with (and can’t find again) was for sixteen weeks. Others with zinc were for 12 weeks. Here’s one that discusses it.

 

Quercetin in the Prevention and Treatment of Coronavirus Infections: A Focus on SARS-CoV-2

 

https://pmc.ncbi.nlm.nih.gov/articles/PMC9504481/

 

I made the sixteen weeks, but only just. For me, quercetin ended up being a stimulant, so it woke me up and kept me up in the middle of the night. Not ideal given my other sleep disruptions. The protocol seemed to chip away at symptoms but nothing as dramatic as the low-dose aspirin.

 

Next up, I had started looking at what might cause the small bowel fecal sign (SBFS) that showed up on my CT-E. Without going into too much detail, the contents of your small intestine are supposed to be liquid. When they show up as semi-solid, it indicates a problem. As I mentioned, one possible cause is damage to the vagus nerve, which controls a great deal of the GI tract and organs. Of the factors I could control the might cause that, microclots were one possibility. As I mentioned before, Covid causes clots. Then I came across this.

 

Famotidine Activates the Vagus Nerve Inflammatory Reflex to Attenuate Cytokine Storm

 

https://pmc.ncbi.nlm.nih.gov/articles/PMC9016653/

 

After bouncing it off my GI, who said the protocol should be safe, I took Pepcid (20mg, 2/day) and Claritin (10mg/day) for 35 days. That definitely helped. I went go for a second round in after a two-month rest, which helped a little more again. Of course, this was during the Valacyclovir protocol (coming up in the next section), so not a fully controlled or isolated experiment.

 

Then, looking for other long Covid treatments, I ran across the truly weird. It was first anecdotally reported by frontline hospital workers during the pandemic who noticed a difference in outcomes with smokers and non-smokers, then finally backed up by a small case study on NIH. It seems nicotine might forcibly displace the Covid spike.

 

Is The Post-COVID-19 Syndrome a Severe Impairment of Acetylcholine-Orchestrated Neuromodulation that Responds to Nicotine Administration?

 

https://pmc.ncbi.nlm.nih.gov/articles/PMC9845100/

 

Given, that I watched my father, aunt and grandfather die from smoking related illnesses, I was rather hesitant to start down this path. But the case studies I found were compelling and it’s not like I was going to start smoking. So, I did a two-week course of a nicotine patch at its lowest dose (7mg/day).

 

A couple things quickly became apparent. First, I suddenly understood why my father smoked. The mental clarity was startling just from that low-dose. More importantly, it worked. Not quite as startling as the low-dose aspirin but definitely in the same zip code. From the anecdotal accounts I’ve read of others who tried it, it may take a couple tries before it does all it can. So, like the Pepcid, I went for round two after a couple of months off. Again, a noticeable change.

 

Chip, chip, chip.

 

 

Rheumatology:

 

My initial research on long Covid turned up that something like half of people formally diagnosed with it also have a chronic Epstein-Barr virus (EBV) infection. Like 90+% of us have had EBV when we were kids or teens. It’s the virus that causes mono if the initial infection is bad enough. In most people it goes dormant, never to be seen again. But in a lucky few, it can re-emerge, like shingles from having chicken pox (same herpes virus family).

 

Persistent SARS-CoV-2 Infection, EBV, HHV-6 and Other Factors May Contribute to Inflammation and Autoimmunity in Long COVID

 

https://pmc.ncbi.nlm.nih.gov/articles/PMC9967513/

 

I bounced that off my primary, and she agreed to order an EBV panel. By now, I’m almost two years into this adventure. I think she thought she would be ruling it out rather than ruling it in.

 

I’d hoped to get it done quickly. But remember the B vitamin panel I said I had an insurance dispute with? Well, here’s where that comes up again. I was in the middle of that dispute and didn’t really want to press my luck with the lab saying you owe us $400 from the previous test, so waited until that resolved, which took a couple of months.

 

Of course, as it turned out, the EBV panel came back positive. Like super positive. Well, now. Finally, another formal diagnosis.

 

The problem being there is no approved treatment for EBV. But interestingly, my primary had had another patient with that diagnosis and sent him to a rheumatologist who was willing to try an antiviral protocol with Valacyclovir that sometimes worked. So, she got me in to see that rheumatologist (or rather one of his fellowship doctors with him consulting on the initial appointment).

 

After a couple more tests (and me deferring a sleep study because this wasn’t apnea and we had a diagnosis), I started that protocol, which involved 6 months of a lower dose than standard, which I’d had and tolerated when I’d had shingles over twenty years ago. Of course, there was a bit of a game that had to go on with insurance to get the script filled, stating it was a thirty-day supply at a higher does usually seen for shingles rather than a six-month supply with each pill cut in half. Yeah, the joys of American insurance, though at least the rheumatologist understood how to get it done without me having to pay full price.

 

By the time I finished that treatment (about a month ago), it had reduced the brain fog and fatigue significantly. Fingers crossed that holds because my rheumatologist isn’t sure what next steps might be if it doesn’t. During the course of treatment, there were a few more blood tests to make sure it didn’t impact my liver or kidneys (as it sometimes does). It didn’t, thankfully, though it might have caused a couple of other unrelated values to creep up in my annual bloodwork. I guess we’ll find out next year.

 

All of which is encouraging but also puts me at the two-and-a-half-year mark of dealing with this. Only in the past six months has it gotten generally tolerable in a quality-of-life sense.

 

 

Conclusion:

 

So where am I now?

 

Well, most, though still not all, of my symptoms have resolved. I don’t think about them constantly every day. I feel much better than I did at my nadir, about six months into the adventure, but am not back to where I started and may never get there. Most of the GI issues have resolved and those that linger seem to be improving slowly. I can eat most of what I ate before. I can drink wine and a little cognac. And my blood pressure is back to normal with no pharmaceutical intervention required. I’ve gained back the weight I lost but no more.

 

On the practical side, I can sit longer again, though time at the computer is still rationed. I can think and read more like I used to. I can exercise. I can help out more around the house, though I always did as much as I could (prepping for hurricanes and evacuating was fun, but a several hour car ride didn’t try to kill me). Writing hasn’t kicked off as much but that is always a slow road back for me. I’m hoping the number of ideas and plans I’ve jotted in my notebook in the past few months are a good sign.

 

In general, I’d say I’m 75-85% back to where I started depending on the day. Which is a pretty radical improvement, all things considered. But I also feel like I fought like hell to get here. I never stopped looking for a new angle or treatment to investigate, new tests to be run, or new protocols to be tried. Keeping up with it became a full-time job, especially when my mental and physical capacity was more limited.

 

I don’t regret any of the even non-standard treatments I’ve tried. The Xifaxan definitely helped for SIBO, as did the Valacyclovir for EBV, neither of which is FDA approved. The low-dose aspirin definitely helped. The Pepcid, Claritin and nicotine patch protocols helped as well. Quercetin some but not as much. I’m hoping someone still reading this finds some utility in one of those.

 

The various supplements and probiotics were worth trying. As a final note on those, I am no longer taking anything regularly, except vitamin D (recommended), B12 (prescribed), and fiber, along with the live culture yogurt and kefir. I am a firm believer in good nutrition and whole food rather than supplements, except as needed for bio-chemical related deficiencies. Add regular exercise and you’ve got a lot of bases covered.

 

—-

 

I have a friend with a lot more going on healthwise than I do. Enough that doctors have looked at her with a straight face and said, you can’t have all that. Maybe not in the textbooks, but here we are. She is always so upbeat and humorous in addressing her conditions, at least publicly. Which I think is what most people want and expect. Graceful martyrdom (people’s perception, not her approach).

 

That’s not who I am. Never have been, never will be.

 

But I don’t lose sight of how lucky I am. During the past two and a half years, I’ve had the mental bandwidth to act as my own advocate as well as do meaningful research that revealed meaningful treatments with meaningful results. Even in the hospital, my memory still functioned, though not as efficiently. The tricky part of assessing where I am now is trying to understand what might be normal aging. I’ve crossed over a pretty well-established breakpoint of where things can change suddenly

 

As well, I’ve tried to keep engaged. I tend to martial my energy for the things that are important to me, whether holding up my end of the chores around the house, seeing to my financial responsibilities, exercising even during the worst when I couldn’t do much with my legs so focused on my arms for months, or gaming as time and energy permitted. There were days where just a daily routine plus minimal exercise felt like a major accomplishment.

 

During this time, I played in an RPG for several months (which sadly didn’t work out) as well as running a yearlong campaign for my wife, somewhat because it was a good distraction, somewhat because I could, and somewhat as a thank you to her. During all this, she took up a lot of slack on things I couldn’t, especially scheduling and keeping a calendar of appointments, and arguing with insurance over the denied test for weeks. Things I’d done for her in 2007 when it was her turn in the blender. I don’t think of it as payback, more as how we all get through this life.

 

We are all born together (us and our mother as a minimum), and eventually we all die alone (when the lights dim, it’s pretty much a personal experience). But most moments in between are communal to one degree or another. None of us make it alone, at least not for long. I am fortunate to have someone caring and patient beside me.

 

When this started, we had two cats (Mara and Nyala), now only one (Nyala). But through the worst days, those two kept me alive, sometimes literally. I was so thankful Mara hung on until she thought I was through the worst of it. But then she had to go. She sat on my chest and purred the very last day she was alive, a gift I am unlikely to forget. I miss her desperately.

 

So, if you’ve made it this far, you might have an inkling of why you haven’t seen much writing output from me. The poems were pretty much all I had to give each time I wrote them. Every time I’ve felt good enough to think about the short story I’m still in the middle of and have fully plotted out, something has come up to defer it. This shit’s been a full-time hobby, even if it doesn’t sound that way.

 

Even with that, I know how far I’ve come. I have very good markers of the struggles that are no longer as severe as they once were. The difference between a half hour ride in the car to a CT-E and a four-hour evac during Milton are extraordinary. As is the difference between struggling to dig Mara’s grave almost two years ago and being able to work in the yard now.

 

Mostly now, I just need rest. I figure my primary job is still to recover since I’m finished with the antiviral. I’m not sure how long that will take, or if I’ll ever get fully back to where I was.

 

That said, this has been a hard essay to write. Like others I’ve mentioned before, that’s because it’s hard to relive, not just for the obvious reasons. I just hope someone reading it gets something out of it.

 

If you do or have, pay it forward. You don’t know who else might need the insight or the simple empathy of a shared experience.

 

 

© 2025 Edward P. Morgan III