So just to get this out there so it’s documented, and that everyone just keeps up to date on me just continuously proving to these doctors that they are continuing to create a potentially bad situation by not reacting, labs have already resulted from yesterday. They clearly don’t pay attention to the data I constantly throw at their face. Even the scan data denotes there is a definitive area of concern within my sphenoid.
Here are the two main takeaways above. The most important lab is the WBC result in the CBC test. You can easily see that my body is fighting infection. It’s been > 15 since I was re-exposed to the mold for literally 1 week back in December on the 5th when we returned to that hazard at Parc. Again, when I left Swedish on December 2nd, it was 8.
Right after I was released, not even two days back at the apartment. I felt extremely ill. Sick. These labs were pulled on 12.6.2023.
Unfortunately, Swedish wasn’t monitoring my ESR or CRP, but I’m pretty sure that they were either somewhat elevated, or normal.
Certainly that’s not the ONLY thing I am closely paying attention to via my labs.
My neutrophils are always high. Neutrophils are the most abundant type of white blood cell in your blood. These makeup 40% to 70% of all white blood cells. They are part of your innate immune system. Just like immunoglobulin, these cells come from your Stem Cells and form to perform the specific task of your front line defense. They attack, and ingest foreign invaders, called upon cytokines to form and attack. They also express more cytokines which in turn amplifies the inflammatory response of your body. So this means the worse the infection, the higher the inflammatory response.
Monocytes is another type of white blood cell that its primary function is to repair tissue damage within your body. Another cool thing is that they can differentiate into macrophages and dendritic cells, sort of evolve based on need. They can also release cytokines, as well as play an important role in decreasing the inflammatory response. Primarily they have anti-microbial properties. Another cool thing, is they are the clean up crew for aging neutrophils as a way to retire/replace them.
Other labs of interest is Creatinine. Which has also been a rollercoaster. Creatinine is used to measure the overall function of your kidneys. Remember. Your kidneys primary function is to scrub, and remove waste from the blood, and return it back. Think of it as your bodies water filter. Another major function of the kidneys, is to create new red blood cells. So it’s important to watch this lab. The lab hasn’t been “extremely” high, but elevated. My explanation there is that they are working overtime to help remove what my white blood cells are killing off (or trying to anyway)
As I point over to my fake PHD on the wall over here, you can clearly see that I’ve had to learn a lot about the human immune system since my diagnosis of Common Variable Immunodeficiency in 2019. As being a network engineer, I’m simply educating myself to the problem. What could contribute to the chronic infections I’ve been consistently having. Why am I so spun up all the time? Again the only logical explanation I have, is that it’s mostly been driven by long-term exposure to mold, of which I’m highly allergic to. In conjunction with me now getting the crucial antibodies I need to find infection, my body is now able to do its job when it comes to defending itself.
The one thing that we need to do, is source control. We NEED to find where this is all coming from. From the 111-Indium Tagged WBC scan results, all signs point towards my sphenoid sinus. Again, it’s literally the last hiding place that infection could be hiding. It’s a small space, in a bad spot. The exit points of the sphenoid sinus are extremely small, and the mucosa surrounding those points can become inflamed and pretty much “seal off” those points. Literally creating a closed environment where pathogens can just hang out and thrive.
Antibiotics/anti-fungals have a hard time reaching this space since it’s a bony structure. Just like the mastoid. Your immune system just can’t get back there. There’s no pathway. Again here I am again pointing to my fake PHD on the wall. I think at this point, if you’ve been following along long enough, you can see why I’ve had to learn all this. It’s because doctors don’t pay attention to basic function. I’ve gotten further figuring all this out from a functional medicine approach vs how most doctors are “trained”.
I just wish I was younger, I would definitely pursue a career in medicine from an Osteopathic (DO) perspective, with 2 sub specialties. You guessed it, immunology, and infectious disease. I think I would do a great job, since I’ve gone through some serious shit. Being able to empathize with patients and help them through the process of healing. Western medicine has continually failed me. Time and time again, and it’s that methodology I wouldn’t be able to get behind.
Another symptom to throw on top of everything else, is that for the past 2-3 days, the rude awakenings have returned. Severe Charley Horses in both my right and left calves. Last night, I had 3 attacks. Where it just strikes out of nowhere. Immense pain for at least 2 minutes. I scared Anies as I writhed in agony. The only way to get them to stop, is to just calm down. Don’t fight them. Breathe. The more you struggle, the tighter they become.
So the plan for today is to take an epsom salt bath and just let that absorb into my legs. Naturally this contains magnesium. When you’re sick, both magnesium and vitamin D deplete quickly. So I also may end up going to a place for a vitamin D shot as well. They are only $35. I just gotta get my body the help it needs. Getting rid of this infection once in for all would be the biggest thing I can do for myself.
I ended up getting out, and headed to Onus IV. I did text my on-call partner that I needed to get out and get this done. The 5am wake up call on top of the 3 other lockups last night, told me that I needed to get this done. The trend is that they are becoming more and more frequent, and I need to try to help my body. So I snagged my laptop, loaded it into my sling and headed out, just in case something massively happened at work, I can just pull over and hotspot it up.
Good thing the place is literally 10 minutes from our new apartment. If you’re ever in need to get IV therapy, without having to go to the ER for help, it’s a place called Onus IV. I’ve been going there for a very long time. Their services definitely helped me through the kidney stone phase since 2019 till last year.
In the past I was going weekly for D3 shots, since I’m chronically low on D3, it’s pretty obvious that taking supplements doesn’t work. I’m sure with all the antibiotics I’ve had, my microbiome is gone, and I’m sure malabsorption is at play here. But since all of the issues started to get worse in 2023, I only got MAYBE 2 shots all of last year.
Was able to get my D3 shot. I was going to get an IV bag of saline with magnesium and glutathione, however I am on-call this week for work, and I don’t like being out when on-call. One of the caregivers that I’ve been seeing for a very long time gave me this special electrolyte mixture instead. She said that this would definitely help calm down the Charley Horses.
I’d definitely recommend going here if you are struggling with a cold that won’t go away, recovery from workouts, or you are looking to find real “health” solutions, you just gotta be ok with IV’s. But since 2018 till now, I’ve lost count how many IV’s I’ve had to get. Whether it’s getting labs, another “fun” night at the ER, or my amazing constant inpatient hospital stays, I’ve easily had 200+ IV’s. Which again was the main reason I got the portocath placed since my veins no longer cooperate with IV’s. You can read my blog post about that here:
With the labs showing what I needed them to, the 111-Indium Tagged WBC scan showing the sphenoid sinus involvement, I’ve painted both infectious disease, and my ENT into a corner. I’m sorry but you can’t deny all the medical evidence I’ve placed in front of them. They have no choice but to actually do something.
Next Tuesday after Hepworth takes the culture from my sinuses, which I really hope he balloons my sphenoid to get the cultures, I’ll start the IV Meropenem and IV Daptomycin. Which reminds me, I need to send infectious disease a message letting them know so I can head there after to pick up the antibiotics.
As I walked out of infectious disease on Friday, I did get a cryptic message from Hepworth:
“I am a bit concerned that sinusitis all by itself may not explain your frustrations and that treating only it will make you durably better but it’s a better place to start than nowhere.”
I’m not sure what that fully means with the context. I was pressuring him to have his office staff contact me that day so we can get an immediate appointment. I did let him know that when the results came Monday, I did call the nursing line, the appointment line, sent the results to him via the portal. I got literal crickets. Maybe he’s annoyed. Maybe he had a bad day. I just need him to help with this final piece. He’s been taking care of me since 2019.
Yes. Certain appointments didn’t go well. Some felt rushed. Some were just completely left field. Some were just … awkward at best. Which is why I asked Anies to start coming to them at the beginning of 2023. Don’t get me wrong, he’s an AMAZING surgeon. He’s highly skilled with anything sinus or craniofacial. But there is a big difference between surgical physicians and medical physicians.
He’s EXTREMELY well known, he’s very high in demand, and prefers difficult cases. His wait list for new patients is almost 6-8 months. But I can guarantee you, once you get past his “difficult” office staff, or his retarded surgery scheduler Stephanie. Hes been fixing his front office staff issues, but from my experience, it’s not there yet. Not even close
You will walk out of there with a solid treatment plan, and a real solution to your problem. I trust him with my life when it comes to surgery. Keep in mind my original sinus surgery in 2019 was supposed to be < 2 hours, which became a 4+ hour ordeal. Here’s a small video of him talking about what he does:
https://youtu.be/diVJiAe7wtg?si=kLUTxpE9ZlvD-0Vg
I feel like I’m at the end of a very long tunnel. I’m literally 1/8th of a mile from the exit. I see the light. I just need this last little final push so I can leave this tunnel that I’ve been trapped in for far too long.
The silver lining that has been all apart of this long journey has been:
Determining my Common Variable Immunodeficiency Disorder, the root cause of my chronic infections, my Mast Cell Activation Syndrome, the chronic kidney stones, the genetic defects specific to mold defense/detection, my severe class 4 allergen to any mold, and finally, the surgical interventions to my sinuses over the past 5 years. Lots of things we don’t know prior to 2018.
Yes. I’ve fired a lot of doctors. I’ve been gaslighted, ignored, told that I was making all this up. Straight up walked out of appointments 5 minutes in the minute I felt that they were incompetent, or simply wasting my time. Spent over $50,000 keeping myself alive. The team I have now is rock solid, and do care. Sometimes you gotta push them a little, but they do hear me, and help me when I need it.
Hopefully 2024 is the year we finally out an end to all of this. I really look forward to crossing that finish line. I have much to be grateful for to have all the people in my life who truly love, and care about me. You know exactly who you are.
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