Enough

What has taken me 47 years to figure out, on my own.  The past month has been one of the most forward-motioning things revolving around my life.  Since the last ER visit, things were swung into action.  I’ve been learning everything about all the issues I’m seeing, treatments, how to do things, etc.  No, I am not practicing medicine, I’m simply determining the proper order of operation on how to rid myself of this fungal infection, and the sheer amount of inflammation found everywhere.  

Yes.  It’s back.  Again.  There is only 1 word that comes to mind regarding all this, and that’s “Enough”.

Yes, that’s graphite on the roof. And now it’s time for people to understand what I’ve been experiencing all my life. I’ve quite simply have been constantly asking for help. I’ve been ignored, bypassed, gaslit, abused, doubted, called crazy, overreacting, or having uncontrolled emotions.  It’s time to set the record straight. With Science, Math, Labs, Facts. Everything I’ve ever said has always been fact based. Yet somehow the perception of everyone varied between pure love, irritation, anger, distortion, or malfeasance. Sorry folks, not a narcissist. 

I know my body. I listen to it every minute. I do the reverse of what I’ve always been accused of. Faking it for attention.  Both my father and sister were guilty of accusing me of that.  

A lot of people ask me why did the ER visit happen, and how, and what did I do. The past 10 years I’ve been trapped in a cycle of non-stop allergic reactions exciting a severely broken immune system, which launches an all out DEFCON 1 response towards something it thinks is there, it gets most of it wrong, a little of it right. This is a daily battle and balance that I’ve always adhered to. 

To simply put why it happened into a 30 second elevator conversation:

My immune-deficiency (CVID), Class 5 Mold Allergy, Active Bacterial/Fungal/Viral in my left ear, Angioedema of my entire body (face/neck/throat), Mast Cell Activation Syndrome/Disorder (MCAS/MCAD), and HAE all triggered into a Chernobyl-level event where my offensive portion of my immune system (that works EXTREMELY well), hard swung my body into kill mode.  The insurmountable of over reaction of every immune related response ultimately caused an anaphylactic inflammatory driven Angioedema attack. 

Which almost did what it is supposed to do, taking me with it.  This was all building over the past 3 months, but also driven by the past 10 years.  This was my body warning me of something wicked comes this way.  I could feel it daily.

The immediate release of white blood cells to attack the on going bacterial/fungal/viral infection, where bad messaging was put in place, activated the immune pathways to ignite and flare an already stressed out immune system to activate/release the white blood cell attack, flaring my mast cell disorder (MCAS) to trigger Mastocytosis, which released a histamine storm, and a cytokine storm, elevating lactic acid, histamine levels, cytokines, inflammation.  This could also be known as Septic Shock.  As this is now officially the 15th time my body has done this since 2017.

So how did I slam on the breaks of this Chernobyl-Level Meltdown which would’ve blown the lid off the reactor, and ultimately stop it?

Simple.  Science.  Medicine. The right doctor. 

DO NOT TAKE THIS AS MEDICAL ADVICE OR WHAT TO DO.  THIS IS WHAT WORKED FOR ME.

When I got to the ER, I repeated the process I’ve learned/developed over the span of the last 14 anaphylactic/sepsis events, but in this order:

Previous in the day, I had taken 50mg of Benadryl, and 40mg of Prednisone at the event at / around 11:30am.

Upon emergency evaluation, an EKG was performed prior to all drugs being administered (due to cardiac distress) under the supervision of the on duty Attending Resident Doctor.  This doctor has been through a few of my septic episodes, so that was huge.  

Agnieszka my guardian angel was there with me all the way.  I am forever in your debt.

Vials upon Admission to ER:

• Heart Rate – 140-170bpm
• SP02 – 95%
• Blood Pressure – 176 Systolic / 121 Diastolic

After a very brief discussion with him, the following was ordered, and administered directed by me:

Wave 1: Via Intravenous (IV) Fast Push via my Bard Power Port for the Anaphylaxis

• 60mg Solu-medrol (MethylPrednisone) – Corticosteroid
• 50mg Benedryl (Diphenhydramine) – H1 Blocker
• 10mg Zofran (Ondastetron) – Antiemetic
• 20mg Pepcid (famotidne) – H2 Blocker

Wave 2: Via Intermuscular Injection into Left Deltoid for Anaphalaxis

• .3mg Epinephrine (Adrenaline) – Natural Human Hormone

Delay 3 Minutes

Wave 3: Via Intraventous (IV) Fast Push via my Bard Power Port

• 30mg Ketalar (Ketamine) – For Pain and Modulating interleukins (IL) and immune related pathways

How it felt from going to near nuclear meltdown, blasting into light speed from epinephrin, and slamming on the brakes with ketamine:

However, it’s FAFO time. I’m not in denial. I’m not bargaining. I’m not depressed. I’m accepting the severely skewed reality of “acceptance” of others. Because this entire time, I’ve accepted the bad genetic makeup of me. This was never a choice, an option, or “let’s try something different”. I’m simply advocating what’s most important to me. I’m not the one doing nothing about it either.  My health.

The irony for too long that I’ve had to deal with, is the Hippocratic Oath all doctors take when obtaining their license to practice medicine. And it’s literally that, the definition of practice defined by Marriam-Webster:

Practice is the act of performing an activity regularly or repeatedly to gain proficiency, or the actual application of ideas rather than just theory.

Cambridge University further defines it by applied by taking the theory, or the idea of something, and applying processes around it. 

Sound familiar?  

It’s what everyone should be doing, but they don’t. They only do this when something negatively impacts their life in some way. This oath, is what everyone should do, but actively choose to ignore its true meaning. Being pedantic about all this is appropriate. 

Medicine as it applies to my problem is the science and art dealing with the maintenance of health and the prevention, alleviation, or cure of disease. 

So let’s just finish this off:

Disease is a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms. 

Sickness a disordered, weakened, or unsound condition. 

This is what people have difficulty with. Truth-driven, science backed, and well defined. This reminds me of George Carlins infamous stand up routine of “Euphemisms”. That man was pure genius. Controversial to his core, but he always pointed out things that needed to be said.  

Generationally, humanity has decided through spoken language to soften bad things to put a positive spin on it. PTSD is combat shock. That’s what my life has been. Trauma after trauma. I. Am. Combat Fatigued from it all. I have a clear understanding of these words, as mostly everyone has some form of this, I acknowledge that, dear reader should too.

Now with all that out of the way, I need to pause to show you who has been instrumental to me keeping me in check.  Driving me forward. Let me proudly introduce you to my immediate family (never an order of importance) to “me”:

My daughter Emily: My Focus 

My Son Andrew: My inspiration to be better

My wife Agnieszka: My Strength and Fortitude

Athena: My Protector

Venus: My Love

Helios:  My Fire

Hades:  My Savior

My Mother Ruth:  My Mentor

Us:

I unconditionally love you all.  Always.  RIP mom, I miss you every day. You are a big part of what, who, when, why, where, and how I am today.  You would be proud.

Now to turn my attention to the facts to the matter at hand, my severely broken immune system.  My official Diagnosis’s as of the writing of this (2017 and onward). But to be clear, I have had serious illnesses all my life. Constantly out of school, work, and friendships. I was allergic to a lot of things, as I got older, it got much worse. Keep in mind, I had 12 separate Septic Episodes / Anaphylactic episodes ALONE in 2017 to 2018.  My favorite place to be on a Friday night :(.

Immunology-Based Diagnosis / Genetic Disorders 

2017 – Common Variable Immunodeficiency (CVID) with Abnormal B Cell Abnormalities and Function 

Rohit D. Divekar – Mayo Clinic Rochester Minnesota

• Previous labs done, not understood at all by UC Health, and most of the Denver community, I engaged Mayo Clinic Rochester to finish the diagnosis.
• Diagnostic Criteria:
  • IgG – 346mg/dL (767 to 1618mg/dL)
    • All subclasses extremely low.  No memory or recognition to find infection.
  • IgA1 – 196mg/dL (60-400mg/dL)
    • Antibodies found in Mucos Membranes of the human body.  Respiratory/Digestive.
  • IgA2 – 2.6mg/DL (13-97.9mg/dL)
    • Subclass 2 extremely low.  Found in secretions in saliva, tears, lymphatic system.
  • IgM – 13mg/dL (37-286mg/dL)
    • Extremely low IgM for first-line defense
  • IgE – 2IU/ml & 530IU/ml (6-495)
    • Experienced both a lack, and too much.  This indicative of the response the body displays during allergies, infection, or inflammatory conditions
  • Vaccine Challenge – TDaP / PNX-23
    • <2% memory retention of any/all polysaccaride-based vaccine
    • Performed twice, failed twice

2018 – Advanced CVID confirmed diagnosis

2022 – Mast Cell Activation Syndrome (MCAS) confirmed diagnosis

2023 – Gold / Cobalt Allergy confirmed via Patch Testing

2023 – Class 5 Allergic Response to Most Mold Strains confirmed (Genetic too)

2024 – ATM Positive detection Heterozygous with Pathogenic 

Invitae Genetic Test Result

2026 – Hereditary Angioedema (HAE) Labs/Genetics Pending

Dr. Edan Sarid – Veros Health / ImmunoE

• Immediately placed on Intravenous Immunoglobulin Replacement Therapy (IVIG)
  • IVIG – Octaagam 10% @ 55g over 2.5 Hours every 3 weeks – Pfizer
    • Current Treatment
    • Infusions are done @ home with my amazing nurse!!
  • SCIG – Cutaquig  16.5% @ 30g over 1 Hours every Week (during COVID)
    • Transitioned back to IVIG after careful considerations.
• Constant antibiotic intervention, escalating to top-shelf anti-microbial (Vancomycin)
• Extreme allergic reactions.  Hives.  Severe Swelling.  Extreme Rashes.  Asphyxiation.
• Hypersensitivity to severe temperatures.  Raynaud’s Phenomenon.
• Due to the severe amount of injections, labs, ER visits, surgeries, my veins gave up
  • Bard Portacath Power Port was placed in my right shoulder
• Everything that comes along with CVID
  • Severe Exhaustion
  • Severe Body Pain
  • Extremely low energy
• MCAS Treatment
  • Xolair was tried, seemed ok, but didn’t work
  • Transitioned to Dupixent on 4/28/2026
    • Probably the most wicked thing ever
    • Not even 3 days after the injections, I lost a huge amount of “shape” as it’s been inflammation the whole time.
    • Dose will be 300mg injection every 2 weeks until the end.
  • Need to maintain H1/H2 histamine blockers
    • 10mg Claritin twice a day
    • 50mg Hydroxyzine or Benedryl twice a day
• HAE Treatment
  • SAJAZIR 30mg injection
  • This is the ultimate shutdown of my immune system
  • This is an emergency medication that will need to be used when I have an HAE flair

Key Features of B Cell Dysfunction in CVID

Impaired Differentiation: B cells fail to properly mature into antibody-producing plasma cells, leading to low serum immunoglobulin levels (igG).

Reduced Memory B Cells: A defining feature is a significant decrease in peripheral isotype-switched CD27+ memory B cells.

Specific B-Cell Subset Abnormalities: Exhibited an expansion of CD21 B cells, which is often associated with splenomegaly and autoimmunity.

Molecular Defects: Known defects include genetic mutations in TACI, TNFRSF13B, CD19, and ICOS, which disrupt B cell maturation and activation

Chronic Dental Infection with Mandibular and Maxillary Involvement 

2018 – Severe Dental infection due to Incompetent Dentistry done in Illinois

Diagnostic Radiology – Dr. Debra L Gander DDS, MS – The Fauchard Center 

DIAGNOSTIC IMPRESSION:

• Nasal Septum Deviation with Bone Spur and Nasal Passage Constriction, Right
• Endodontic Underfill, Teeth # 2 (Palatal Root), 12 (Palatal Root), 14 (Palatal Root), 20, and 29
• Defective Restoration, Overcontoured Restoration, Teeth #13 and 18
• Apically Widened Periodontal Ligament Space, Tooth #14 (Palatal Root)
• Endodontic Overfill, Tooth #18 (Distal Root)
• Persistent or Resolving Periapical Inflammatory Lesion, Tooth #18
• Probable Biological Width Impingement, Teeth #18 and 3 1
• Furcal Alveolar Bone Loss. Teeth #18. 19. 30. and 3 1
• Probable Recurrent Dental Caries, Tooth #21
• Crestal Alveolar Bone Loss, Facial, Tooth #21
• Bifurcated Dental Root, Tooth #28

2018 – Removal Extraction of all lower teeth / Oral Steroid Injections

OMFS – Dr. Gregory Lurcott DDS – Colorado Oral Surgery

• Removal of all root canal treated teeth. He removed all of my lower teeth, and most of the upper teeth. This left me with 6 original teeth, on the top, in the front
• Steroid injections for inflammatory lesions
• Mucocele excision. Biopsy. 

ENT / Surgical Encounters

2018 – Benign Osteoma Neoplasm Left Frontal Sinus Tumor with Occular / Temporal Involvement

2018 – Extremely Uncontrolled Sinus Infection Left Side

2020 –  Extremely Uncontrolled Sinus Infection Right Side

2023 – Sialendoscopy of Salivary Glands / Obstructions/Concretions

2023 – Cervicofacial Actinomycosis / Lumpy Jaw

2023 – Simple Mastiodectomy of Left Ear

2024 – Revision Canal Wall up Mastiodectomy of Left Ear

2024 – Fungal Infection / Abscess Removal

2024 – Sialaendoscopy of Salivary Glands / Gland Obstructions/Concretions

2026 – Severe Left Ear infection.  100% loss of hearing in left ear.

Dr. Edward J Hepworth – Denver Sinus Care

Dr. James Lupo – Rocky Mountain Ear Center 

• Only Sinus remaining is the Sphenoid Sinus
• The left mastoid was completely removed
• Fungal Infection aspect was driven by mold in the environment
  • Alternaria Alternata was recovered from my Abccess, same strain that was found in the apartment that had EXTREMELY high levels, along with 4 others.
• Proven active Actinomycosis infection.  Took 3 rounds of antibiotics to stop it.

It’s been a wild 10 year long ride.  I went to my GP today, to initiate FMLA/STD with my employer.  I will be out on disability until 6/28/2026 so I can fight this infection, and keep my immune system in check.

Next Monday, Mayo Clinic Infectious Disease will be taking over to get the Fungal AFRS, and Disseminated Fungal infection gone. FOREVER.

Thanks for being patient with me everyone, it’s appreciated!

All For Now