Downward Spiral Once Again

As much as I was hoping that my labs would be looking better, they aren’t.

These labs were drawn last Thursday. I woke up this morning expecting to feel like a million dollars since that’s what ketamine does, however, looking at those labs, indicates I’m headed towards sepsis soon. The only positive thing, is my IgG is at 1200, which is considered “immunocompetent”. The day prior to these labs, I had IVIg, labs were drawn, but by the time the nurse got to LabCorp they were closed. They rejected the specimen, but I almost bet you, my IgG was probably < 550. Which in laments terms, that means my immune system is basically gone.

I’m still doing 2g of Vancomycin every 12 hours, I’m staying on top of all the heart medications. But something is wrong.

I feel it all along my lower jaw, only way I can describe it as it feels like inflammation all along my outer jaw, with the two prominent bumps at the front of my chin. It’s the cysts I feel that span from behind my left ear, and run across my jaw, and face, then the outer space of the front of my mouth, then runs down the right side of my neck. It’s not normal.

I’m continuing to throw fevers ranging from 100.9 to 101.6. I’m consistently needing to stay on top of the Tylenol every 6 hours. My body is fighting, what it’s fighting, I can only go off of what I see in the MRI. I see enhancement in both my left and right ears, within the middle ear space (mastoid). The “defect” is still under the left side of my tongue. In the soft tissues of my face there is enhancement. So it’s fair to say that the antibiotics, and antifungal aren’t doing much. Maybe just keeping whatever this is at bay.

The constant exhaustion I was fighting during the mold exposure at Parc has come back. I feel, weak. The space between my shoulders are so sore. My neck is constantly popping again.

Anies has been helping me out with face rubs, and shoulder rubs in conjunction with the percussion tool. And I’m abusing the shit out of my heating pad.

The white material continues to come out from under my tongue, as well as I can scrape it out along the inside of my cheeks. I’m trying to be as diligent as I can with the chlorahexadine mouth rinses. But I’m at that point of I am utilizing everything in my arsenal to try to help calm things down. It just doesn’t seem to be working.

Hepworths office called me last Friday to let me know that the purulent material he removed from my left maxillary yielded nothing. Shortly after, Schleves office called saying the punch biopsy taken wasn’t sent for pathology (which is somewhat disappointing).

So I am at a loss as to what this is. The only thing I have to go off of is my labs worsening, and what I’m seeing in the MRI done in the last week of December. Also including how I feel. I’m worn down. I’m exhausted. This fever keeps me on the couch. I’m trying to rest as much as I can. The body aches alone just feel like I’m under constant attack. It hurts to sit up, walk. My eyes, and sinuses between my eyes just burn. It feels like I’m not getting impactful sleep. I’m just feel like I’m burned out in all fronts.

The ketamine yesterday was helpful in the sense of putting all the wheels back on the ground. My mind feels calm for the present moment. The anxiety and pain cycle I was trapped in for the past 4 months seems to have gone way down, but it’s only a matter of time until it goes back to where it was. Luckily with the cardiologist approving it, and Klarisana fixing their billing issues I’ve been fighting them for the last 4 months has been fixed. They sent a check for a good portion of the insurance disbursement to the Denver location, hopefully it shows up on either Monday or Tuesday of next week.

I emailed the labs off to to Kaufman (ID), Sarid (immunologist), and Hepworth (ENT) the minute I got them.

I have an appointment with Hepworth on the 16th at 8:30am, so I am hoping that appointment I can push him into emergency mode with surgery. I know that this is where this is going. I don’t care what it takes at this point, but from where I feel the main aspects of pain, it’s in my sinuses, mouth, neck and ears. The fever I am constantly feeling tells me we still have work to do, even the labs say so.

I promise I’ll keep fighting this until I can no longer do this. I’m grateful I can WFH 100% of the time until 2/1, but we NEED to get this under control. I don’t want to be going to work and getting people sick. That’s the last thing that I want on my conscience.

If we don’t get this under control soon, however, I feel as though as if I’m headed towards a septic episode. Labs tell me that, as well as how I am feeling.

I would love to think that the IVIg I got last week motivated my body into fighting, but at some point, my body will need help or else it will just turn on me like last time, septic episodes are no fun. At all. Seeing as I’ve probably gone through at least 9 of them. It’s just scary.

I need to beat whatever this is. Whether it’s bacterial, fungal, demonic possession. Hopefully I don’t start climbing walls and speaking in weird language anytime soon. I’m just exhausted from this constant battle my body has been in since well, 2019.

I look forward to the days of when my labs look normal, I wake up not feeling like I’m under constant attack.

I’ll have to make a point Monday to reach out to Dr Lupo to get him engaged. When I saw Dr Kaufman Thursday, I told her that she needs to be the centerpiece of all this, and get everyone together to formulate a game plan. I know that won’t be happening, so I’ll just have to make sure everyone is aware of what’s going on, so they can handle their piece of this.

What do I think this is?

#1 – An infection in my face and jaw. With the white sticky gunk I constantly get out of my mouth daily, in conjunction of the top my tongue just brownish/black. There’s absolutely some sort of invasive process at play here. This only started AFTER the implants were removed, as well as the metal drill bit.

#2 – An infection in my sinuses that I quite clearly get rid of. The MRI clearly shows enhancement throughout my Frontal, Maxillary, and Ethmoid sinuses. I don’t believe this to be “post operative changes”. Surgery was 4 months ago.

#3 – Infection within BOTH mastoids. MRI indicates “post-operative changes” within the left, but the right mastoid is also showing signs of fluid. The revision mastoidectomy was done at least 7 months ago.

#4 – Maybe my port is infected? No proof, just a possibility.

#5 – The SPECT-CT scan had significant uptake in my C3/C4 spinal vertebrae. My neck is still locking up daily. Maybe they are misinterpreting the “arthritis” seen.

#6 – Or maybe it’s like Kaufman said, I’ve been on the antibiotics too long.

#7 – I don’t believe this to be true, but maybe the water damage has kicked off the mold process in the kitchen?

#8 – Maybe the stents in my heart are contributing to this, and my immune system is just going batshit because they are there. But again, my WBC got down to 11.1. Inflammation markers were almost normal. But let’s just keep it on the table for now.

The other thing that I’m monitoring my weight. Being limited to 1500mg of sodium, and needing to watch fat intake, I’m probably my only topping out at 1100 calories a day.

Weight loss is something I’ve been unable to achieve for the past 3 years. I always hovered around 195-210. But again, I was maybe eating 1700 calories, not worried about fat content, or sodium.

But with the new diet, it’s just falling off with minimal effort. I don’t know if it’s a good thing, or bad thing. This journey I’ve been on since 2018 has been traumatic to say the least. The septic episodes of 2018, the tumor removal in 2019, the start of IVIg. The chronic sinus infections, the crazy streaks that were going down my legs and up my torso. Constantly trapped in a revolving door of chronic illness. Going into survival mode.

I feel lucky and blessed at the same time, but I really wish the medical community would’ve been more helpful than just writing me off as a crazy patient. The PTSD I gained from all this didn’t help things one bit, but like I’ve said before, the ketamine helps with that too. The damage has definitely been done. Both physically, and emotionally, but I absolutely won’t let this beat me.

I’ve gone through too much to just give up. It’s my priority to beat this, and push it off a cliff so it never comes back.

Thanks for reading.