Looking Towards Wellness

The past 24 hours has been a well of emotions. The new one that I have no idea how to react to, is calmness. As I’ve struggled through the years with all of this. It’s been exhausting. If you’ve been following along, I think I did a pretty good job of documenting milestones. Bad days, good days. But more often than not, its been a miserable road.

Most of the time, from at least 2019, was just constant pain. It never ended. It was inescapable. It would be one thing if it was my hand, or foot, but when its your face, its hard to get away from it. The fucked up part, is that up until now, its been a HUGE ?!?!?! every day I woke up. The one feeling that was most common, is it felt as though as if my body was on constant high alert. Switched on, 24/7. Constantly feeling my face crawl. The neck pain is also something that has just gotten worse over time. Specifically that, my neck has started to just lock up, especially when I turn my head to the right. As I try to pull my head back to the left, it feels like it’s just getting hung up. At times, it hurts to just move my head. To compensate, unconsciously, I just deal with the pain, and move my head back.

When I went to Dr. Dobbs, and he had the SPECT/CT scan done. One of the findings (that hes ignoring), is that the scan showed that my cervical bones in my neck have worsened. There was significant uptake seen in the scan, to which the radiologist just notes that it’s most likely “Degenerative Facet Disease”. I think however, this is a clue as to the extent of the damage that this infection has caused. It could quite possibly be the systemic mold that I am dealing with, it’s the toxins it’s releasing. Although I’ll never be able to prove it, the realistic/logical side of me tells that this is what’s going on.

Aggie and I went out last night for some last-minute groceries for the holidays. I could immediately tell my body has just been an immense amount of stress as we walked out of the apartment. No more than I locked the door, the all to familiar feelings of illness hit me right in the face. The immediate body aches. My body’s weird reaction to which I feel hot and cold, like it cannot regulate properly. The common thing I feel is, I just start sweating. Whether its cold sweats, hot sweats, night/day sweats, its pretty consistent. As I made my way down the stairs, my body reminded me every step I took, that this isn’t going away anytime soon.

As we got to Target, my shoulders and neck just started to lock up. As we walked in, every movement I made, just started aching everywhere. My feet felt like every step I took, I was adding weight. Kinda like when your kids hang on to your feet as you drag them across the floor. As we stood in the checkout line, the sweating just became more and more persistent. Every joint hurt. It took a lot to get into the Jeep. I just felt like I aged 40 years in a matter of 30 minutes. As we drove over to Whole Foods, my foot started to lock up. Which is another thing that has always plagued me. Getting weird charley horses, or spasms, or just straight up lockups. They only way to get rid of it, is to just walk it off. Literally. As we walked into Whole Foods, my foot just started popping. Constantly. It was so irritating, but we were on a mission for cranberry sauce.

Walking through Whole Foods, things just got worse. I could feel all the muscles between my shoulder blades become hard as rock. It was painful to just move my head. I just wanted to get home at this point. Because the longer I’m out, and active, the more miserable I am becoming. We got home, and our usual couch ritual of beat up my shoulders happened. But this time, it was extremely painful. Almost hypersensitive to the touch. I spent the next 30 minutes just laying on the heating pad. Eventually, my back let up.

I slept in this morning. It’s a work from home day, but I was up by 7:30. Typically, I’ll get myself up around 6 or so. Which is typically spent on the couch, trying to “collect” myself. Whether it was pain or nausea, I would constantly have to focus myself to try and get through the day. More or less building up the strength to “survive another day”.

This morning was different though. Yeah, I was sore, my mouth burning as usual, but less. The top of my head felt really weird. Just like the crawling sensations I had in my face, but now its on the top of my head. The next thing I noticed, is I just felt light-headed. Which is such a contrast from last night.

It’s pretty clear that my body is, and has been suffering for quite some time. The mechanisms its put in place to bridge the gap, has probably been endless, and unknown. Over the past 5 years specifically, its been through everything. The itching on the top of my head still comes and goes, I know I shouldn’t be itching it, but I can help it. The feelings in my face, and sinuses just feels off. Awkward. Typically I have to clear out my sinuses every morning, and up until last week, I would get this nasty brownish sticky mucous out, it feels like it comes from my left ethmoid region. I haven’t had that come back, but the same usual whitish “gunk” keeps coming out. The minute I clear out my sinuses, the burning sensation that I’ve associated in my sinuses, its definitely something thats foreign.

As disgusting it is to describe this, I feel its necessary to just talk about everything. More or less full-disclosure. The things that my body is telling me, is that its quite simply trying to do what I’ve been trying to do, and thats finding a path towards wellness, normalcy. I know its been warning me every day, of every hour, of every minute for the past 5 years, thats clearly understood, unfortunately, I couldn’t find the “fast solution” to this problem. I had to wade through the myriad of doctor bullshit, do this test, stand on one foot, cough.

I am pretty sure what I am feeling now, is that my body is trying to detox itself from what its been having to deal with for so long. This is the fallout from a literal unchecked fungal infection, chronic inflammation, and one big non-stop allergic reaction.

So where do I go from here, how do I stay on the path of wellness, and most importantly, will doctors pay attention if I slide off of the path. For now, I think the treatment plan of the Voriconazole is going to be central to ridding my body of this. Yes, it is putting stress on my liver, and its also driving up my WBC/Neutrophils. Carly, who is Dr Sarid’s assistant called me today, and wanted to know what was going on. Since the last labs that were pulled I was looking “ok”, I’ve now swung the other way, and pretty quickly I might add. I told Carly what happened, what this is, and where this is going. She was super surprised. Ever since I’ve been going to Veros, she’s been there. She’s seen me go through this, year after year. I have a followup appointment with Sarid Nov 30th. I think its a good idea to keep him up to speed with whats going on, since he’s one of the few doctors that actually listens.

I also have a followup with Infectious Disease on the 29th. I’m pretty sure they will keep me on the Voriconazole, I just need to stay on top of them.

Another thing that happened today, and with all the findings / things I’ve learned recently, I contacted our leasing office. Since the whole issue with my health is mold-related, I had them send out someone to take samples. He came in around 11, but beforehand, he started outside. He sampled the outside air. He also sampled the living room, as well as the bathroom. He did share several common stories about people who are immunocompromised and mold exposure. He told me that I am definitely on the right path. We just need to make sure that I am not surrounded by it. Mold is everywhere, its hard to get away from it. I just want to make absolute sure my exposure to mold is at its minimum when I am at home, or I’ll just continue to fight this problem until the source is removed. I should hear back mid-next week on the findings of the samples that were taken. It was this machine that you load canisters onto, and it pulls in the air, was pretty cool to see how its done.

He didn’t find/see anything glaring inspection wise, but did give some good pointers with getting a good HEPA air filter. I do have one, but it does have a built-in humidifier, but I never really turn on the humidity part. Just does the air. He suggested to never run the humidifier, so I guess we will see.

I did call over to Dr. Schleve’s office to see if there was anything preliminary culture wise, but they haven’t gotten anything yet. His assistant said she will contact LabCorp to see where we are at with the cultures, and if theres anything we have to go off of. I’ll see Schleve next Friday to remove the stitches from the punch biopsy, and possibly freeze more of the crap off of the top of my head. When I saw him last, I made sure to tell him, no more steroids, period. Now that we know that there is a fungal element to this, it’s a huge no-no.

Dr. Naylors office also called me with a cancellation spot, so I’ll get back into him on next Monday. I am sure with the new findings, and everything that I’ve put together, he will be able to recommend a treatment path going forward. Because I know Infectious Disease won’t.

As for what I’m doing treatment wise now, to cover the fungal infection:

• Oral Voriconazole 200mg Twice Daily

To combat the sinus issues, I irrigate using a NeilMed Hydropulse Neo along with the hypertonic saline solution, I have been using:

• Amphorectin B Compounded Powder
• Mupirocin 2%

From the perspective of detoxing from mold, this is the best regimen I could come up with:

• Undecylenic Acid 250mg Twice Daily
• Quercetin 500mg Daily
• N-Acetyl Cysteine 750mg Daily
• L-Glutathiaone 100mg Daily
• Monolaurin 100mg Daily
• Garden of Life Immune Probiotics Daily

As far as the pain goes, unfortunately I still have to lean on the opiates, but I am hoping as time goes on, this will no longer be needed as much as I am taking now. But seeing as how bad my neck is, I don’t think that I’ll ever be able to go without them. For now its 4mg of Dilaudid whenever I need it. As for the Ketamine, I am going to continue getting it every 3 weeks or as I feel it to be necessary. Ketamine for a large part, is whats gotten me through the past few months while I had to wait for surgery. I know its a pretty big hammer, but I am at that point of not caring. If it helps, it goes in the tool belt. It does an amazing job of pain management, on top of helps me heal from the PTSD from this medical nightmare. I am scheduled for my next maintenance dose on 11/25.