Root Cause Analysis

After Infectious Disease gave me the results of the fungal cultures. I spent the rest of the day just reflecting. On pretty much everything.

Let me be fully transparent.

As I look back in pictures throughout the years, specifically of my face, since about 2009, something changed. As far as I can remember back, the “acne” was always a problem that never went away.

As the years pass, as I got older, the acne, and illnesses became more and more severe. You can easily see the progression in my face, and no, I’m not referring to age.

As I want to preface this post, this all starts with Common Variable Immunodeficiency. CVID is multi-faceted disease that retards certain aspects of the human immune system. For me, the cards unfortunately, were really stacked against me.

To begin with, when I was born, I was unable to have my mother’s breast milk. The term used was that I was a Colic Baby. Which doctors at the time, recommended to my mom that I was “allergic” to her breast milk. Which today, is completely false. Colic babies really are getting too much breast milk, but I’ll debate that some other time.

As I’ve talked about it before, when you’re born, your immune system isn’t fully in place yet, but some of it is there. Your immune system is comprised of immunoglobulins. IgG as you gestate comes from your mother’s placenta. Due to its molecular weight, it’s the only immunoglobulin capable of crossing the placenta.

Around the 20th week, IgM begins to synthesize as the spleen develops. IgG also starts as well, but most of this comes via the placenta.

IgA on the other hand, doesn’t exist until after 6 months of age. Until then, you receive IgA and IgD from your mother’s breast milk. Which is something that didn’t happen for me.

During the immune testing, I also have an IgA Subclass 2 deficiency, on top of the IgG deficiency.

As I was a child, as I grew older, the illnesses started. Seeming enough, when we lived in Texas until I was in the 2nd grade, I don’t remember being sick. The minute we stepped 1 foot into Minnesota, that forever changed.

We temporarily moved into my grandparents farm. We were there for at least what I can remember, a year or so. That’s exactly when, the illnesses started. It’s not because of cold weather, or hygiene, it was the environment we moved into. That farmhouse was pretty old. And along with that, mold.

The point I’m going to try and make moving forward, is that mold is what was also making me sick. Chronically. High fevers, constant antibiotics.

As we moved into the “blue house”, the illnesses continued. And became way more frequent. Strep throat, pink eye, bronchitis, sinus infections. All year long.

At some point, my parents believed that I needed my tonsils and adenoids out. Because at the time, that’s what you did to all children. You removed their tonsils and adenoids, but what they don’t realize, is that those 2 body parts are apart of your immune system. Again, let’s remove more of the immune system I didn’t have. During that time, we can say “immunology-based science” was non-existent.

After the yard sale, the illnesses evolved. Became pneumonia, severe bronchitis, still got strep throat. So we solved nothing by doing that. The answers I was starting to be told was, “you’re just a kid who gets sick a lot”. If this happened today, they would have found the CVID easily, and I could have had a fighting chance then. But that obviously didn’t happen.

Throughout high school the infections continued. Got Mono from someone in high school. I was home for at least 3 months.

I moved out of the house at 18. It was time to move on. My first apartment was fine. But it wasn’t there. It was then, that I noticed, that my illnesses became less frequent. I would know, I had to go through all this. I still got sick, but not as often, but the length and severity of when I did get sick got longer.

Around 2007, I moved into my own place in Chicago. Home. Illnesses still happened, but more or less the same thing. Until 2008. I moved into a new apartment, and that’s when the strange symptoms started. I was constantly getting sick again. Not for hygiene, and not for the sake of not being clean.

Life turned me to Lisle in 2009, and this is where the bedbugs came from. It was disgusting. But nonetheless, I got more sick after being bitten for probably a week. As life got better, we moved into a 2 bedroom apartment across the hall. More space. More room

But it never smelled right. Something was off. Again, unless you see mold, how would you know?

We lived there until 2013-2014’ish. But Jesus Christ. That’s when everything got worse. I was constantly sick. Always going to convenient care, getting meds, going back to work. I was too busy and ignorant at the time. But this is also when the acne went to a whole other level.

Pus constantly coming out of these cysts, entirely on my left side. Some of them would grow to the size of a grape. I would always play with them. Get them out, but then a week later, where I took the 1 cyst out, 2 would take its place. On top of that, my teeth started to require root canals. Constantly. By 2015, every tooth except 4 had been root canaled.

It started on the left side, and slowly moved its way through my entire jaw line. But it’s during this time, that we were both sleeping 1 ft from the foulest nastiest dark mold spot. I found it when we moved to a new place. We got out of there, and never looked back.

2014-2016 was when the infection started to get into my sinuses. I was constantly getting sinus infections. Strange muscle spasms. My face just felt… fat. But I’m not fat (really I’m not).

As time went on, the infections were ramping up in frequency and duration.

We moved to Colorado in 2016. And what was weird, is the infections stopped when we moved. For probably the first 4 months, outside of my mouth hurting, and the weird acne, no pneumonia. That’s when in our bathroom, the upstairs neighbor must have had a tub leak, or something, because mold started to grow on the ceiling. When I reported it, they ended up tearing out a ton of drywall. And boom. It was fucking everywhere.

Then the strange seizures started. The ear aches. The black out spells. On top of that, my sinuses are killing me at this point. Fuck this place.

We moved out in 2017 the minute our lease was up. That place sucked anyway.

When we moved to the 2nd CO apartment, the infections didn’t stop. They got worse. And more new symptoms started showing. Rashes. Rashes everywhere. Pustular rashes. It burned. The forbidden scratch.

I turned to a dermatologist to start helping. I’m out of ideas. Every cyst he cut out, more would take its place. My face would get so swollen for weeks every procedure. He probably pulled 9 of them out. Pathology always came back nothing. Again, because we weren’t looking at mold, just bacterial sources. My teeth hurt more too after each cyst removal. I almost started to think to myself at this point, is this somehow connected?

I found an internal medicine doctor here to try and help (she actually interviewed me lol). But the theme was determining at the time, is that if I have Celiac Disease. Which strange coincidence, I would consume gluten, rashes got worse. She ran a few tests, but really didn’t go into what they meant. She was just looking for big stuff anyway. For whatever reason, she did do a DNA test.

This DNA test shows that I have genetic deficiencies in the Human Leukocyte Antigens portion of my DNA. 0301 refers to inflammatory disorders of the skin, and mucous membranes. 0603 refers to my DNA’s inability to recognize mold. 05, points towards Crohn’s disease. But this is what we know now.

I had to go to Minnesota in the beginning of 2018. I felt like shit. My whole body hurt. I felt so worn down. I shrugged it off to stress with the job. As I drove, I got bored. I started picking at the cystic acne that was basically everywhere. I got a lot out, but as Minnesota got closer and closer, I could taste the most foulest of shit.

I was there for 3 days, I texted Aggie that I’m coming home. That I don’t feel good. 14 hours later I was home, but by the next day. This is when the nightmare truly began.

I was admitted for sepsis for the first time. I felt like death. It was the first of many near death scares. CT/MRI showed nothing (but it did). Was diagnosed with cellulitis, and discharged. I was hospitalized 5 more times after this, countless ER visits. The silver lining in this, is this is when we found out I had CVID. UC Health refused to do their jobs, so I turned to Mayo Clinic.

I was diagnosed with CVID at the tail end of 2018, with Mayos recommendation I begin IVIg therapy. But that didn’t happen, because UC Health felt that it was a hydration issue.

Part of the CT/MRI in the beginning, I was referred to Dr Hepworth. But it was a 6 month wait. wasn’t sure at the time what it was for.

That’s when the first thing out of his mouth was, you have a really large tumor in your left frontal sinus. It kind of worked out too, because when I was at their office, my head felt like it was going to explode. I had an extremely serious sinus infection. Nothing was helping.

Surgery did.

But mind you, my sinuses up until this point were all sealed off due to infection (not a fun feeling either). It was at this time, I met Dr Sarid, and started IVIg. Luckily, they had an on staff immunologist.

At the tail end of 2019, the rashes and reactions continued. Sarid orders a blood allergy test that covers a lot, food, environmental, drug. One of the only things that stood out in the allergy test:

Since there wasn’t anything glaring at the time, there wasn’t much attention paid.

Going back to apartment #2 in CO, our upstairs neighbors water heater rotted out. Letting water go everywhere. This happened around the appointment with Hepworth. The property did nothing to clear up the water damage. As time went on, I can only assume, that mold began to grow again. In the vents, in the ceiling, in the utility closet. A year later, a “new” neighbor moved in. And that’s when more water damage happened. Due to stupidity this time. Overflowing sinks, toilets, showers.

We had our walls ripped apart several times, but just halfassed repair work.

As I recovered from surgery, things felt ok. I got dental implants. Which most likely pushed the fungal infection into my jaw now.

But the infection came back. In 2020, now it’s the right side of my face. Sinus surgery again. But after that, was when the facial pain started. The acne started to grow again. I was fucking miserable.

I began getting crazy rashes, which required an Epi pen. Great. Now I get to carry around one of these. Neat.

Over the next year, the infection never got better. My left ear would constantly ring. Pulse. Hurt. My face was starting to turn red. And my face started to swell up again. The rashes were becoming more and more frequent. My skin felt like it was crawling at this point. I would always complain of dead cat floating in piss smell (yes very specific). It would come and go. It was nauseating.

We moved to our current apartment in 2021. But the infection was just a daily thing at this point. I was just not getting better. I felt lost. Onto 2022, the swelling in my forehead, and left ear got to the point where I couldn’t take it anymore. The facial swelling was through the roof. And now my mouth is producing this sloughy whitish material. It’s coming from under my tongue, and the salivary glands on the side.

I found a new GP, he ordered an MRI of my face. But the usual radiologist didn’t see anything. Nothing conclusive. Seeing as how it’s my ear, face, sinuses. Again. Back to Hepworth.

After meeting with Hepworth, he found several things wrong with the MRI taken. My face for one is now lighting up. As in soft tissue. And the space behind my left ear is full of “infected fluid”.

So he refers me to Dr Lupo, who ultimately carried out a mastoidectomy. But to my disbelief, nothing grew. Bacterially. But that’s what was tested. Still missing the mold. Lupo did say the inside of my ear looked like a war zone. And that he had also found a birth defect in my middle ear. Which was closed off.

Hepworths surgery was 2 months later, sialendoscopy. Only thing, is all my salivary glands are seized shut. He got them open again, but soon after, they closed right back up.

Oh 2023.

I flipped the 5 alarm fire with Hepworth in May. Since the mastoidectomy last year, repeated MRI’s showed that there was still infection in my left ear, face, and tongue.

But instead, I went straight back to Lupo. Had a 2nd mastoidectomy, but this time, it grew Staph Epidermidis. But nothing else.

It almost seemed after that, the pus started to regularly come out of the incision site. Out of my left ear lobe. Behind my ear. It was always this yellowish foul smelling pus. But every time I put it on a culture stick, just staph epidermidis.

I returned to Lupo 3 times this year. We did culture pus from both the left, and right ears. But of course, Quest lost the samples. We were even looking for fungal at this point.

As time went on this year, my face is just a balloon at this point. Everything hurt. It was to the point of where my skin couldn’t stretch anymore. Then that’s when my lips started to get super dry, and crack right in the corners. But this time, it would bleed. I could get pus out of the corners of my mouth.

The sinus surgery that happened what 6 weeks ago now, found staph, and mold in my sinuses. Yup. Mold.

Now hopefully I’ve done the hard part of explaining key things of the past, and now it’s time to relate them all to determine the Root Cause Analysis of why I got so sick, and why it took too long.

The first big piece of the puzzle, was the fact that I have CVID. That’s a considerably sized chunk, but that’s the underlying cause. The second piece to the puzzle, is me getting sick where mold is. It all lines up. Mold exacerbates the illness, and makes it worse. The severe / strange acne was a good piece in that, it’s actually fungal. So with me having CVID, comes the 4th piece. The genetic malfunction for fighting mold, specifically. Now it can just go unchecked. For years. The allergy test done, showing I’m severely sensitive to the same exact mold, that was taken from my sinuses during surgery. Confirms why I was so goddamn miserable. 1 non-stop allergic reaction. The final piece, that got me to figure all this out, the mold growing Alterneria.

But there is 1 big puzzle piece missing. Does our new apartment have this mold? It’s clearly not good for me. It is a serious health hazard. Tomorrow they come at 11 to test for mold.

I’m almost positive they will probably find it.

Prognosis? Avoid mold at all costs. The antifungal I am on is the best treatment to be on, it’s how a question of how long? Since I’ve dealt with mold most of my life, and seeing its ruin, I’m sure I’ll be on Voriconazole for quite some time. Shit. Might as well just take it for prophylactic reasons.

This is my $50,000 jigsaw puzzle, that I had to pretty much assemble myself. Doctors will gaslight you. Misdirect you. “Don’t know / don’t care” attitudes. Doctors default to psychological diagnosis when they aren’t smart enough to figure out the real root cause of the illness at hand. Advocate. Don’t back down.

It’s your body. You are the one who lives in it. But try to be aware of those subtle warning signs. Everyone ignores them, I did, until 4 years ago. I just couldn’t put the puzzle together. And I’ll tell you right now, nobody will do that.

I learned the language of doctors. I researched shit endlessly (almost obsessively). I started to interpret the data that other doctors discarded as not important. Or it’s no big deal. It is a big deal, because this is me. Not them. Over time I’ve slowly pulled all this together.

I am hopeful that this is the final answer to what has been plaguing me for pretty much my entire life.