Answers… and Hope

Well. I don’t know where to begin this blog post. Firstly. That drive was the absolute worst. It definitely took its toll on both Aggie and me. She slept almost all day yesterday. We talked in the morning, trying to figure out where to eat, plan of attack for today.

Soon after we figured out the details of what we were going to talk about, I stepped out for a bit. When I returned Aggie was out cold. I just let her rest. As for me I laid in bed, got a few short naps in, but Aggie slept from 12 till 6. I ended up waking her up, otherwise she wouldn’t have slept that night.

We ended up going out to eat, spent some quality time together. It felt… normal. Something we really haven’t done in a long time. Surprisingly we walked 2 blocks to a restaurant called Crave, but they were closed for a staff meeting, so I quickly went with option B. As we decided whether to walk it, or get an Uber, we decided to walk it. I almost walked a mile surprisingly. Thankfully it was all downhill walking.

When we got to Twigs, there was a 45 minute wait. However 2 seats at the bar were available so we sat at the bar and had an amazing meal together. Again, this was all foreign to me. We haven’t done this in a very long time. Maybe it was a subliminal message about what the visit at Mayo would be.

We both got up early. Packed up everything in the Jeep, checked out of the hotel and walked across the street to Mayo Clinic. As we walked through the familiar doors of Mayo, the anxiety started to build.

Back in 2022, I was able to drive myself to MN. To see infectious disease for what was going on in my left ear and face. My labs were really bad, both MRI and CT imaging indicated an infection in my left mastoid and left frontal sinus. To only be met with “There are no signs of an active infection”. As we walked through security, this was what was playing back in my head.

I told myself, that this won’t happen again. My guardian angel is with me. We shuffled our way to get my labs drawn at noon. It was a quick stick, in and out. Labs that were ordered was a CBC (Complete Blood Count), and my immune panels of IgG, IgA, and IgM.

As I walked out I felt pretty horrible. I knew that my labs were going to look bad from an infectious standpoint. But this also came with a huge plot twist. As we got to the 15th floor, I checked in way early to see Dr Joshi. As we found a place to sit, labs started to result.

For starters, my WBC is still high, and neutrophils were high. I expected this. I knew they would be high.

Both my IgG and IgA were in their usual spots. Since I just had IVIG back on the 17th, I should still be good. Then the bombshell hit. IgM was extremely low

As you can see this is the LOWEST my IgM has ever been. I was somewhat shocked. I was hoping that it would be in its usual spot, but 13!? Something is wrong. Now I have 2 pieces of medical fact backing me up here.

The appointment was at 2:15, but we weren’t called back until around 2:30. Which is fine. Typical for Mayo.

We sat in the room for another 20 minutes waiting for Dr. Joshi to step in. I gotta tell you this, this was probably THE BEST doctors appointment I’ve had since Dr. Divekar diagnosed me with CVID.

As we sat down we went through my extensive history. Got her caught up on what happened between 2022 and till now. Yes. I did bring up being dismissed in 2022. It was something that to me, was unavoidable. That I was simply overlooked. I even told her that I walked out of that appointment in frustration. She then said she’s giving herself / Mayo 2 months to properly diagnose, and treat whatever the hell this is. I told her that I would have NO PROBLEM coming back if we have a treatment plan. It’s just finally nice to be acknowledged that this is a real problem that needs to be dealt with.

Then she sprung into action. I told her about the second Madoidectomy that happened, the fungal abscess, and the black mold. She asked me about family history, and what were my current symptoms. The first thing I brought up was that 7 weeks ago, my WBC was at 19. Which was when I restarted the posaconazole and my WBC dropped to 14. Which just shows this is fungal. Since she’s dual specialty, she also has knowledge into how to treat fungal infections from a CVID perspective, she brought up the 1 drug I really don’t want to go on, but at this point, I don’t have a choice. Apmhotericin B. This is the biggest antifungal gun we have. It’s not a fun one to get either. The side effects are bad enough on its own, so bad it’s been nicknamed the chemo of antifungal treatments.

The topic then turned to the non-stop pus coming from the left side of my face, and the icky shit that constant comes from my sinuses, as well as the crap from my mouth. Still, fungal. She then brought up the fact that we need infectious disease to properly treat me. I told her about how in Denver it’s impossible to find an infectious disease doctor because I’m treated like I am crazy. About how things get ignored, and pushed to the side. We have definitely strayed from the fact-driven decision making. All the facts are there, that they are choosing to ignore these MEDICAL facts.

We dove deep into the why this is happening, and with the ATM gene mutation turning pathogenic, her thoughts is this being driven from the lack thereof a gene, probably multiple. She then brought up that a full genome sequencing must be performed on me due to the ATM mutation. She believes me about the Celiac panel, where 4 alleles where mutated, but back in 2017, not well understood. When in 2023, I signed into a genetic website and blew my free trial (yes it’s for Doctors only). I don’t care anymore. I’m going to do the research here since nobody wants to.

To my surprise, 2 of these allele mutations are known to cause fungal response in the human immune system. For lack of a better word, my body won’t do anything against fungal infections from a kill perspective. So then she turned to us and said, “Can we stay a bit longer? I’m getting genetics re-involved, actually along side infectious disease and ENT”. I was blown away that she was actually trying to pull off a miracle here.

The drive itself is not fun at all, and she understands that. We are here, let’s try to get this done by Wednesday, if not we rely on telehealth, LabCorp, and Health Images should we need to do it that way, or just put a schedule together, and we simply just come back.

As we walked to the front, I thanked her. It felt nice that this is finally being taken seriously. 30 minutes later, the scheduling assistant walked out with a full schedule. The kind I’m used to. Where you spend all day at Mayo, but I will be seeing ENT, Infectious Disease, and Genetics all by Wednesday. I took the schedule and thanked her for all the hard work.

Another thing she mentioned during the appointment is that if Mayo cannot determine or have positive forward motion within the 2 months, that she will send an official referral to the National Institute of Health (NIH). Which is a government funded medical entity within the United States. This referral would go to them, however, it’s up to them to accept me as a patient. I would become a case study.

They don’t just take anyone. They only take cases that are difficult, challenging, or just outright hard. This would open up the door to treatments, and medications unavailable as they do not follow the FDA guidelines nor insurance. Everything would be paid for. Travel to/from Bethesda Maryland. Doctor visits/consultations. Medical exams. Treatments. Most importantly, medications.

This would put me at the forefront of bleeding edge medical treatment. Maybe help shape future care for others like me. I hope that we don’t have to get this far. I would love to have Mayo solve this problem. It’s quite clear there is an infectious process going on.

I just want this over with once in for all. I’m tired of waking up feeling the way I do every day. Dealing with all the health issues, especially the pain in my face and mouth. It would be different if it was somewhere else, but anyone that’s experienced facial pain, you know it’s the worst.

We pulled off a miracle. But at this point, this needs to be done. And things what I need. I’ll update this again as our Mayo visit progresses on what we learn.