Well, what took almost 47 years to figure out 6 simple answers to the 6 very complex questions I ask myself on a daily basis as I am an engineer, who seeks out truth while applying fact, and learns best practice via trial and error, all while collecting data to present as “my life’s work”, utilize logic to fix any problem I myself creates, or others.
Those 6 simple yet complex questions are who, what, when, where, why, and most important how.
As I learned yesterday, I was diagnosed with a 3rd immune related complication, with a 4th and 5th investigation which will probably result positive. I started on Dupixent which mimics the actions of Ketamine. Oh boy is my body going full-stop, and it feels amazing. My immunologist also prescribed both Ruconest/Sajazir for emergency intervention for the angioedema, to help my MCAS from exploding. But now I have a way to find infection, act appropriately, and slam on the breaks if it goes too far.
To explain last Saturday, I was diagnosed with Infection-related Angioedema. This is a condition where it’s scaled with 3 levels of difficulty. Infections, or trauma trigger an immune response, however this will present as severe swelling which may up to 72 hours, however in my case, my immune system is now Chernobyl, and it does not de-escalate because of the infection still present in my head (I see it on the MRI).
This co-morbidity along with my CVID, and MCAS is just another reason for me to tell everyone, and warn people. This is real. This isn’t pseudo-science. In 2022, I tested positive for the ATM gene mutation via a $200k genetic test which led me down a very deep rabbit hole, but this is all real. All of these conditions are the reason why last Saturday happened.
The six questions begin with who, what, where, when, why, and how. As you all know, I hit the chaos wall in 2014 when an under controlled dental infection spread across my lower jaw causing the worlds worst pain tooth by tooth. By the time we moved to Denver, this chain reach ruin started in my body which end of the day, my CVID is what is to blame for everything. This infection was 99% sure, stemmed from mold exposure in Illinois from 2012, and repeated exposures since then. Growing up, I was also sick constantly, I can assure you it was mold back then too.
Most mold strains will cause an anaphylaxis event with my immune compromised body. I’ve learned that the hard way. Learn from me.
Because of the nature of CVID and having underdeveloped B-Cells, these cells trigger your innate immune system to swing into action via several defense mechanisms, but now is not the time for me to teach you immunology 🙂
In 2017 I was officially diagnosed with CVID w/ Abnormal B-Cell function by Rohit Divekar @ Mayo. I started IVIG in 2018. I was diagnosed via the Cunningham-Rundles scale, scoring extremely high in clinical and lab presentations.
At the same time, the unknown infection that continued to wreak havoc in my head and face that has been under treated, misunderstood, basically ignored by everyone but myself. I have been screaming for help from a very young age. This isn’t the time to talk about this, yet. The 15 septic episodes I went through from 2017-now was the DEFCON 1 situation.
Going into the “Fred incident”, I had 2 IVIG infusions to support my immune system to survive the surgery. I had a bone osteoma the size of 2 golf balls removed from my sinuses by my ENT in 2018 which was sealing off all exit points in my sinuses, harboring the infection further. After the 5 hour ordeal of the surgery, this took at least 6 months to recover from. This surgery took its tole on me as the underlying immune issue of CVID, MCAS, Angioedema, and a level 5 mold allergy began to work together as I recovered at home.
The apartment we were in from 2017-2021 had mold. We documented this several times. With the moldy environment, and a fresh surgical procedure, the mold settled into my sinuses, and went deep. All I had to do is breathe. Prior to surgery, between 2016-2018, I had 36 ER visits which required Epinephrin intervention. I christened my friends wedding with an allergic reaction, sorry Mike. (It wasn’t the food).
After the 1st surgery, the unchecked inflammatory response kicked my body into overdrive, where I generated 17 kidney stones between 2018 and 2026. 6 of which required surgical intervention. But again, more trauma, which escalated my immune response further.
A second surgery on my sinuses was done in 2020 (during COVID) which the sinus infection moved to the right side. Yet again, more trauma and inflammation, and a fresh home for more mold to hide.
In 2021, we moved to a different apartment building, same complex, and everything went to an 11. Between an even worse mold situation that was clear as mud (at the time), As time went on, now the blood clotting problem starts as the mold is starting to overwhelm me from an immune perspective, but my body is now creating thicker blood. From 2018, to now, I have had 2 separate instances of Pulmonary Embolism’s, and 7 Deep Vein Thrombosis across that timeframe. Which big one ending with, was the widow maker heart attack I experienced at the tail end of 2023.
As this phase of everything continued, my body is screaming at me. I could feel the slow grip of death tighten around everything. No escape. No help.
The infection that has spread to my left mastoid since 2018, started to overwhelm me. I then turned a partnering ENT to focus on my ear in the beginning of 2022. I had a simple mastoidectomy performed, but it didn’t feel like anything is over. Again, more trauma, fresh place for mold to go, make me work that much harder. I had 2 follow-up sialendoscopies to attempt to fix the swelling under my tongue.
In 2023 I had to throw the 5 alarm fire with the same ENT that something is wrong, and yes, the infection is back. This now requires the full removal of my left mastoid bone with a canal-wall up revision Mastoidectomy. But again, still surrounded by a silent asphyxiation of mold. 2 months later, the primary ENT removes a fungal abscess where Fred was removed, and everything slammed together in my head.
I had the apartment tested environmentally, and it came back with unprecedented high levels of mold toxicity. The same mold found in the air, was the same strain found in the abcess. Simple math at this point. But before I could act, the widow maker hit me at the end of the year in 2023.
I called an attorney to invoke the warranty of habitability clause found in all leases. I then moved us out of that place. Root cause. Mold.
After the 2nd mastoidectomy, for pain, I had to introduce ketamine. What a life saving drug. This is what saved my life.
Today in 2026, last Saturday was a simple message my body was sending out into the universe, “enough”.
All this took was me engineering through my problem.
Thank you to everyone who has supported me through this. It’s been one hell of a rough ride. But now, I see the light at the end of the tunnel. 1 day at a time.
So in the end, what’s the root cause?
CVID doesn’t let my body see infection. MCAS fires when the infection becomes out of control. Angioedema is the effect of most likely Hereditary Angioedema. All driven by mold.
It’s taken $280k of my money, 46 years of my life, the patience of everyone (including myself), and roughly $30M for me to say this very simple thing:
“Not Today”
“Finding the right doctor can make all the world of a difference. I’m either the success or the failure of the American medical system.” – Me 2018
“Someone had to graduate at the bottom of their class.” – Ruth Zoubek 2011
“The ebb and flow of time does not welcome chaos with an open door, time is something that nobody can control. I’ve chosen to shut that door. My approach will always be reserved to how people show me who they are. Mirrors are always one-sided, yet reflects things as they are. Do not get distracted nor distorted by those people who have the intention of a “fun house” of illusion they portray.” – Me 2026
I still need help getting out from under this mountain of financial destruction. I have roughly $87k to go. I would appreciate anyone by sharing my true story, or helping by making this known by all. It deserves a good look.
I am not out of the woods yet, I still need to get this infection under control.
All my best,
John (CVID / MCAS / HAE / ATM / Sepsis) Survivor and Warrior.
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