Backwards Progression

This just sucks. The pain I’m starting to endure on a systemic basis just keeps stairstepping every day. It’s a slow progression that, as far as I know, there’s really nothing else I could be doing at this point.

The pain starts at the roof of my mouth. To put it into perspective, it feels like I ate totino’s pizza rolls straight from the microwave. My mouth just feels like I just burned the hell out of certain places. 100% this isn’t nerve. Last night before I went to sleep, the lump I felt on the roof of my mouth was considerably larger than it was this morning. It’s still there, it still hurts, but its size has shrunk.

I’ve noticed erratic symptoms like this the more and more the brain fog has slowly been lifting from my head. Just like yesterday, the bulge I was feeling right behind my left cheek bone, it got pretty big, but I didn’t touch it. Today it’s almost gone, but a strange brownish sore sits on top of it. So this has got to be the fungus on the run. It’s been deep within my body for far too long.

The more I think of it, the same sore spots in my mouth, are the same places that the skin graft / jaw surgery was done in 2015. I compared pictures, I’m not wrong. The same burning sensations I started to feel in 2012, when I started to root canal every tooth on the bottom, has really been a fungal infection I got from the apartment, realistically it’s the same feelings in dealing with today, except nobody wanted to really slow down, and take the time to figure out what this really was.

Putting aside the CVID, the infection itself was not only spread further by doctor Bacon, year after year, he ignored the obvious. In 2015, when he pulled the infection out of my jaw, that should have shot up a huge flare that this infection is not just local to my face anymore. It’s now in my jaw, and it’s clearly spreading due to the fact that the infection wasn’t being addressed at its source.

The mold exposure is most likely the root cause to really “how bad” this has gotten, just simply because mostly any doctor has just ignored the possibility that this isn’t bacterial, that this is fungal. As far back as I can remember, fungal testing was never done.

Because after the jaw surgery, that’s when the facial cysts started to get bad on the left side of my head. The ear aches got worse, the sinus infections got worse. Yeah, hopefully I’m out of a mold exposure scenario, but the damage is, and is already done. Slacking my head on Jared’s car actually damaged my middle ear, and jaw. So I can only conclude, that the origin of this infection was tooth 18. The far back left bottom adult molar. This is the tooth, that bacon re-treated several times. Because again, every retreatment done, was done while I lived in that apartment in IL with mold. So the spores I was breathing in, not only found a home in my sinuses, but my face originally.

I played with the acne, burrowing it deeper, and spreading it every time I took a cyst out. To just feel worse weeks afterwards. That’s what pushed it into the deep spaces of the left side of my face. With that crack in my middle ear, it moved into my mastoid. From there it just slowly grew, and at the same time, the same fungus was growing in my left frontal sinus. The osteoma that formed, and grew I think was just a bad immune response.

So that’s what set the stage to what I’ve been dealing with here, over the years. Again, the doctors were only looking at bacterial sources. Not fungal. Mix in the CVID now, that’s the pathway the fungus took, unchecked and unabated. Because again, as I was driving out to CO from IL in 2016, that same acne I picked at again relentlessly. Same scenario.

2 months after making it into CO, that’s when the illnesses went from taking a break, to the acne going out of control. The rashes, the “anaphylactic” reactions, my immune system at this point has just given up, and the bomb was basically fueled, and lit. It was only a matter of time.

Because 2016-2017, I retreated every single root canal. Every re-treatment, made me feel worse. By 2018, the exposure to the rat at my desk at work, tipped my immune system overboard. By April 2018, I had schleve remove cysts, I had another dermatologist remove cysts. I immediately went septic after the removal. Both times. Also in 2018, we removed tooth 18, immediately went septic after the extraction. By the tail end of 2018, I had every tooth from 18 to 21 extracted. After every extraction? I kept getting worse, until tooth 21. Once that tooth was pulled, things seemed to calm down.

The reason I pulled them all, is I was at that point of desperation. Nothing I’ve “done” up until this point has worked. Doctors are clueless, unimpressed, and pretty clearly, not looking at everything.

At this point, I’m at Mayo, and CIVD was the diagnosis. The ear infection, and sinus infections I started to deal with at this point were non-stop. With a fungal source element. Just FYI, antibiotics are for bacteria, won’t touch fungal. So whatever bacterial infection I may have had, was now just giving the fungal infection more room.

The sinus surgery of 2019 was to address the massive sinus infection, as well as the osteoma. But either my left frontal sinus wasn’t cleared out completely, I mean in Hepworth’s defense, that osteoma took 4 hours to remove. So after that I don’t know what wasn’t done or overlooked. What doesn’t help things, at all, is the fact that in 2019, that was the CO apartment I highly suspect also had mold from all the water damage we had to endure / experience. I almost want to go over to that building, and knock on the door. Talk to the people who are in the apartment. Let them open up the utility closet, let me look at the ceiling from the utility closet to the vent in the living room.

So with my sinuses being freshly opened up, the mold was either not removed fully, or the exposure from that apartment in conjunction with the sinus surgery, gave more fungus the opportunity to spread and and grow even more. Because after the surgery, and the recovery, I soon began to have issues again, but on the right side of my sinuses. The cysts were still coming back, still being removed by Schleve. But at some point, we started doing Kenalog injections. Which knowing now what I didn’t know back then, steroids give fungus a HUGE ticket to just expand and spread.

At this time at the end of 2019, I made the stupidest decision to have implants placed in my lower jaw, again hindsight is 20/20. The infection is still in my jaw, not only breaking off the drill bit didn’t help anything, but the fact that after the implants were placed so poorly, I immediately had issues with implant failures, deeper pain in my jaw. The implants not only spread the infection further, it was the denial of the doctors not looking at the infection from a fungal perspective, at this point, I’m surrounded by literal incompetence.

By 2020, I returned to Hepworth with the complaints of sinus pain, but on the right side. The pain was near the tooth extraction sites for teeth 1-4. So that means the fungal infection that was transferred from the bottom of my jaw, is now making its way through the right side of my sinuses. Hepworth did order a PET scan, that scan showed infection. Surgery happened in May. The cystic acne is not going away, Schleve was only electing to do injections at this point. I could feel this “thing” spreading through my face.

ER after ER visit, doctors just looked at me like I am crazy. That I am making this up, when the bloodwork they ordered, demonstrated an infection. Between my WBC always being high, my lactate was also high too. Had just 1 single doctor thought outside the box (heaven forbid) that this was fungal, that could have stopped my misery then.

In 2021, my whole body started to hurt. Between my ear always hurting, my face always on fire, my mouth just a literal dumpster fire. The kidney stones, and the clots took over. I’m pretty sure that was my bodies way of saying enough. I could barely make a working from home day a full day. With out naps. So my schedule evolved to 24/7. COVID probably brought out the worst in me with respect to panic. I knew I wasn’t healthy, and the last thing I needed to do was lose my job. I began to push myself over a cliff from a physical perspective. It took its toll on me physically, and mentally.

I’ll be honest, because that’s what this is about. The truth. I started to withdraw from everything. I started shutting down non-essential services. I was home 24/7. I never wanted to leave the house for fear of something bad happening if we were out in the middle of nowhere. I wasn’t healthy enough to do it #1, nor did I have the physical strength. Everything at this point hurts. Doctors are going in multiple directions. Not getting the attention I needed from doctors, I took it as a sign of “this is it”. I was now in survival mode. I was not eating. I wasn’t doing the things I should have been doing to take care of myself. It’s almost as if a dark cloud moved in. I was trapped everywhere I turned. Every breath I took was suffocating. I started to hallucinate more. Seeing stars, shadowy figures in my vision. This is all real stuff.

That’s when we found the clots in my lungs in 2021. At this point my apple watch just became annoying. Fast heart rate at rest. On repeat. With the clots “managed”, I started to feel somewhat better, but the rest remained. Constant sinus infections. Constant ear aches. The acne spinning out of control. My body just hurt. Every inch. My neck especially got worse. Anytime I moved it, it hurt. My shoulders would lock up into a ball as a response. At night, I started to notice my bodies inability to maintain temperature. The night sweats came. The swelling under my tongue became more and more prominent. The two bumps in front of my jaw just got larger and larger.

When 2022 came, I moved to a new department at work. I think this was one of the smartest moves I could have made. I was letting the old job consume me 24/7, I wasn’t paid to be 24/7, but the expectation became just that. This allowed me some much needed mental space. I could think again. I did warn the oncoming group of my health issues, but I was welcomed with open arms, which made me feel just amazing. But the illnesses progressed. Not only 2 weeks after I started the job, they were requiring return to office, as COVID is still going strong. By the 4th week, I could feel something changing. My mouth hurt even more. The white gunk that I was getting out was becoming more and more frequent. Thats when I started to push Dr Hepworth for the recurring ear and sinus issues. Then I got COVID. That derailed my medical efforts for at least 6 weeks. I was hospitalized for it for a week, with a clueless infectious disease group that wrote off my symptoms as psychological. It was the anger I had sitting there, day after day, them refusing to help me, made me push my right foot on the right pedal.

Soon after, Hepworth said I needed more surgery. But I need a different doctor for my ear. Dr Lupo performed a Mastoidectomy. His report was pretty extensive, but again nothing grew. My face was starting to explode at this point. I’m still getting Kenalog injections for my face. Yes, it made me feel better for a few days, but the pain immediately would come back 2x worse. Hepworth just did the sialendoscopy and nothing else. I know its where he was focused, but my sinuses were killing me.

Hepworth referred me to Dr Naylor for co-infections. I said to myself, why not, lets try someone else. Dr Naylor took me 100% serious. All the symptoms I was describing. The mold exposure, the recurring infections, the rat at my desk. I brought all the major things that happened into the light, and he listened. From our first appointment, the suspicion was Lyme disease. The nasty stretch marks that are all over my legs, and stomach were enough of a selling point for him to start investigating.

At this point, I’ve had so many antibiotics its not even funny. As Dr Naylor said, I’d be surprised if any bacteria has survived. I took a urine based lyme test. It came back positive. So right then and there, the 3 new things that I now know I have, is Bartonella, Babesia, and Borrelia. The triple threat infection that comes with Lyme. As I started his protocol, on top of IV antibiotics, I could immediately see the backwards progression I was starting to make. I got incredibly sick. I was so sore. The more I treated the lyme, the more sick I became.

As 2023 came, the lyme treatment continued. The Herxheimer effect I was experiencing just kept on getting worse as I treated the Lyme. I turned to doing IV home detox treatments. The same company that would come out and give me a bag of saline when I was going through the kidney stones. This IV bag included 1L of lactated ringer saline, magnesium, Glutathiaone, Myers Cocktail, and torodol. I stuck to getting a bag every 2-3 days. It did make an immediate impact. That I am finally starting to get a lot of the toxins out of my body from the die off from Lyme.

Apart of this, the herbals that Dr Naylor put me on, also had anti-fungal properties. As the second suspicion he had, is whats known as MARCoNS or Multiple Antibiotic Resistant Coagulase Negative Staph. From the mold exposure. My shit immune system. The constant cultures of Staph Epidermidis. He wanted to start chipping away at that, but by April, my ear was fucking killing me. My face was a balloon. My sinuses were constantly producing pus. I had this wicked dead cat in urine smell that would constantly come and go again.

I started seeing Hepworth every 6 weeks. I had had enough of this 1-2 time a year appointments with him. I told him my ear hurts again, that all my sinuses hurt, the crap under my tongue is not going away. Every visit I had with Hepworth he would talk of surgery. But would never commit to a date. I started to bring Aggie to the appointments to have her help me advocate that this needs to be done NOW. By May he agreed to surgery, but still no date. My ear at this point is leaking crap. Theres pus constantly coming out of my earlobe. I went back to Lupo.

He immediately hospitalizes me. Now we are doing a revision Mastoidectomy. It was like I had awoken a sleeping beast. Infectious disease is now paying “some” attention to me. I’m just at the point of frustration with everyone, because I keep saying the same things.

As the summer went, the recovery was abysmal. Pus kept coming out from the incision sites. I kept pushing Hepworth for a surgery date. Finally mid-July, I got a date. But at this point my pain is out of control. Infectious Disease decides to put me on Rifampin. Which interacts with a lot of medication, my dilaudid included. My pain control is out of control at this point. Pain management maxes out my dilaudid dose. 8mg every 6 hours. In lamens terms, that would drop anyone. But it allowed me to function. Get out of bed.

Finding the mold during the last sinus surgery finally gave me the missing piece of the puzzle that I’ve been looking for, for a very long time. Yes, CVID was a big part of this, but we still gotta figure out what pathenogens are reeking havok with my body.

After I’ve started the voriconazole. Daily my body just evolves. It honestly feels like I am going through the Lyme detox again. But to summarize, I am more miserable than I have ever been. Strange sores, and bumps just appear, and disappear. My skin has changed so many times, I feel like I am a chameleon. The latest thing to throw onto the pile, is my lungs are starting to hurt. From my armpits to the breastbone, it feels like I am breathing through concrete. Going up and down stairs quickly is a really bad idea. Because by the time I get to the top, I am so out of breath its not even funny. To the point of fighting for air. Which is really not a good place to be.

That just underlines where this fungus is, how long its been there, how long its been ignored. It’s more or less a good thing that I am doing this, but is this EVERYTHING I can be doing. Realistically, what am I looking at from a detox perspective. How do I get back to being “normal”. Only time, the right medication and treatment will tell. As long as I have the right doctors paying attention to me on a monthly basis, I think I will make it out of this.

That doesn’t make this any easier to deal with.