Extensive, but Good Updates

Since my last post, things have been so hyper busy at work. I will say this, I’m glad to be back doing what I love again.

To start off. Infectious disease has been officially removed from the picture. Dr. Hepworth my ENT is taking over the management of the infection, and all medications surrounding it.

From my previous update, a substantive breakthrough where HSV-1 was cultured. When I met with Hepworth last week my hypothesis was this.

Every surgery perpetuated an HSV outbreak. From the implants, the multiple sinus surgeries, the dermatologist interventions, and the Mastoidectomy. Each surgery just overloading my body.

In short, I had HSV Meningitis in both my brain and spinal column. Which would explain the 3rd person feelings. Constant body spasm/lockups. Rashes. Severe swelling pretty much everywhere above my neck. Aside from the mold infection / long term exposure.

Since being on the Famciclovir for a week, I am taking the dosing regimen used for shingles. Which is a severe/painful cousin of HSV-1. Unlike your typical infection of shingles, or Herpes Zoster, it never erupted. Until it started to push through my face, which is how we captured the culture.

So it’s now officially documented in my medical history of what the tail end of this “journey” has been. Dr. Hepworth gladly took over the Posaconazole Rx, as well is keeping me on the Famciclovir dosing regimen for the foreseeable future.

The plan of attack is to get the HSV to go into remission, and by remission, it returns deep within the nerve sheaths throughout the human body. Once we can get it to “hide”. We then switch to Acyclovir mega doses to kill it so that it becomes dormant.

He’s referring me to a Virologist who specializes in this, unfortunately, you guessed it, he’s at UC Health. All I can hope for is that he turns a blind eye to all the lies put in my medical record from a UC Health perspective, and goes off all the factual evidence I’ve been collecting for the past 3 years when I turned my back fully on UC Health.

The proof?

It was at this point I lost hearing in my left ear. My sinuses were completely inflamed shut. The upper left portion of my eyebrow where the tumor was removed in 2019, feels like I have a horn. This was the 2nd time I had tested positive for HSV 1.

At this point (unknown to me yet), the fungal infection has begun to go deep within my tissues, spurring HSV to activate everywhere in my face, mouth, and neck.

This was the pinnacle where I am literally no longer eating. I probably consumed less than 800 calories a day. But I continued to gain weight. This was most likely due to the mycotoxins the fungal infection was producing to just start to shut down what little of an immune defense so had left.

At this point, the SCIg treatments became painful. Because my skin at this point was starting to almost thicken/harden. I ended up having to get larger gauge needles as the smaller gauge needles would no longer pierce my legs.

I went back to Hepworth, and that’s when the MRI revealed “fluid” from my left mastoid all the way to the rear of my skull. This was fungal (unproven), with HSV being the inflammation aspect. I was seen by Dr Lupo almost immediately.

My hearing in my left ear was gone by almost 85%. Visible lesions started to appear across my entire left side of my face. Barometric pressure changes were the most painful thing ever.

This is probably what saved my life. I couldn’t breathe. I actually topped out at a body temperature of 106.1F. I was hospitalized for 5 days. The corners of my mouth were cracking. This was the fungal infection, HSV, and COVID pushing my immune system to nothing. My head at this point hurt. Strange electrical feelings would hit my brain. Most likely, this was when the meningitis started in my brain. The day before COVID hit, Dermatology cultured my cracked lips, and again, positive for HSV-1. I felt like absolute death the next day.

Since the valtrex they had me on wasn’t doing anything, we began 2 week regimens of 1000mg daily doses of Famciclovir, which seemed to help some, but it wasn’t enough.

I went back to Dermatology, HSV positive 2 weeks after Famciclovir was stopped. So clearly, HSV is beginning to dominate my body. With the hidden fungal infection fueling it.

I had to “survive” until June of 2022. Which was when the first mastoidectomy happened.

Everything started to hurt. The feelings of fire ants all over my body became the next weird symptom of all of this. Unbeknownst to me, the toxic environment we were living in was just making a new home where my surgery was done.

At this point I felt disconnected. My mind wasn’t what it was. The brain fog was unreal. I felt. SICK. But no matter what I said, or did. Nobody would listen.

I felt trapped. Imprisoned in my body. Between upping my dose of Dilaudid to 8mg every 6 hours, muscle relaxers to stop the daily bodily lockups, and 10mg of ambien at night only yielded 4 hours of “escape” from this hell I was living in.

It was at this point it was so painful to eat. Swallow. Stand. Talk. Pure hell.

Hepworth had the Sialendoscopy scheduled, but it was just a waiting game at this point. All of my major salivary glands were seized shut. With nothing to even help. I was prescribed Cevilime. Which stimulates saliva production. My saliva felt like syrup at this point. Everytime my glands would turn on, it just perpetuated more pain.

I felt like I wasn’t going to win. From my point of view, nothing worked. Nothing helped. I was trapped at home while on FMLA. Again, trapped in a toxic environment. It seemed like summer was the trigger. As summer went by, my patience was reduced to nothing.

I began to regress. I just wanted to give up. My only hope was the sialendoscopy.

It didn’t. The next 2 days, the huge lump on my neck became “angry”. It was the worst feeling in the world. Pathology came back with “severe dermal inflammation”. This didn’t help the cause at all, it just made things 100x worse.

The lump on the left side of my neck felt like 1 solid mass. 3 days after surgery, the Dilaudid isn’t working. Surgery is 2 weeks away with Hepworth. I felt like I was losing my mind. I couldn’t think straight anymore. The anxiety of all of this was through the roof. So I caved. Went to the ER.

Thankfully an empathetic ER Dr listened. Felt my neck. Felt the lumps on the inside of my jaw. Agreed to NOT do any imaging and just listen to what I needed. I asked for Fentanyl, and Versed. I needed an escape. Temporary or not. I needed to shut off my brain. The pain was indescribable. The next 3 hours I felt amazing. No pain. No anxiety. Pain free calm.

You can see the literal difference having all the gunk removed. As Dr. Hepworth called them “concretions”. Rock solid. What typically takes 40 minutes to perform, took over 2 hours to remove all the blockages. The relief was amazing. Yet short lived. No more than 3 weeks later, the swelling returned.

It was the HSV flaring, and the fungal infection driving this. As 2023 came, so did all the original symptoms. But I knew what to look for. Once again, around May, everything was full blow swelling again. More lesions started to appear on my scalp, neck and face. Once again, Dermatology cultures HSV. I go on 1500mg of Famciclovir for 1 week, and by the end of that week, things started to calm, but the pressure in my left ear wasn’t getting any better.

Barometric pressure swings would send me to the floor. Full on vertigo was back on. The blackout sessions returned.

The near-seizure like spasms I was getting were 2-3 times a day. I scared Anies half the time as I was waking up in writhing agony. The cramps were lasting longer. My left portion of my neck was seizing up. The place where the tumor was removed just burned. It was hard again. Hurt to even push on it. My sinuses were inflamed shut again. It was near impossible to breathe through my nose.

To aid with the neck lockups (which at this point, the meningitis is now in my neck). It hurt to look right. Constantly frozen. I turned to doing Botox/lidocaine injections. The knots under my left shoulder blade, and all along my left trapezius were as hard as golf balls.

The injections helped. It allowed me to turn my head again.

The 2nd week of May, I had Hepworth order the 4th MRI since the last mastoidectomy.

Consistently this spot in every MRI done showed this fluid/inflammation. As it pushed up against my brain, the fluid and inflammation could be seen on the outside. I could just feel the swelling.

So I contacted Lupo, had an appointment already for the end of May, but when I left for that appointment, I packed my hospital bag.

Lupo immediately hospitalized me, and put me in surgery the next day.

The pain I experienced was something else. Dilaudid, nor Fentanyl would touch it. Which was when my anesthesiologist turned to Ketamine.

Ketamine has been a game changer with respect to how my brain interprets pain. An immediate off button. It allowed the Dilaudid / Fentanyl to do its job.

Ketamine was the only answer. Since doctors were ignoring the constant swelling and pus coming from the left side of my neck and ear, it was the only thing that would show me the light at the end of the tunnel.

Unfortunately I had to wait until October for the 5th sinus surgery. Above my left eye, you could clearly see the protrusion of something. The feelings of fire ants all over my face and body at this point was extremely unbearable.

Only ketamine, and pain meds got me through. Keep in mind I’m back on FMLA. I’m trapped at home in a toxic environment that’s just perpetuating everything.

Dr Hepworth removed an extremely large fungal abscess from my frontal sinus. But the clue was that it wasn’t a typical fungal infection. It was mold.

Alternaria Alternata.

An environmental black mold which I am HIGHLY allergic to. Which kicked off mold/air quality testing at our apartment. The result? Extremely high / toxic levels of:

• Alternaria Alternata
• Cladosporium
• Aspergillus
• Many others

Every mold I have a class 4 reactivity to. Class 5 means death.

No more than a week later of the results of the mold testing. I suffered a STEMI heart attack. 95% blockage of the arteries that feed your heart.

The past 6 months I would go through dizzy spells, seeing stars, unable to breathe. My extremities just going numb.

The heart attack was due to infectious disease not taking me serious. The mycotoxins have now started to impact my thyroid (kidney stones), my skin, and now my heart.

Mycotoxins have been well documented that it increases your clotting factor. Then factor in me being on IVIg, which increases clotting risks.

The perfect recipe for disaster. Needless to say, we finally had an answer as to what was making ALL OF US sick. Cats included.

We evacuated Dec 28th.

Within 2 weeks, the subsequent swelling, symptoms, and my weight began to melt away.

My eating habits were unchanged. The only thing that changed, was getting out of a severely life-threatening living situation. I was losing on average 10 lbs a week.

The Posaconazole was finally starting to go to work now that I’m not surrounded by mold.

I’m glad I had the apartment retested. Why? Because during my ICU stay, I watched them rip apart our outer wall where the mold infestation was. While the patio door was open.

This quite simply contaminated everything in the apartment. They didn’t cover / nor protect anything. They did the bare minimum. The work required should’ve taken them 3 weeks to complete.

They spent 3 hours. Provided a false mold result test. Told us it was “safe” to come back. I knew how they were handling it, the lies that the leasing office were saying. I could see right through it all. The minute I walked through the door, I told Anies that the mold is still here.

The HSV flares continued. The swelling continued. Because the damage was done. The mold infection was perpetuating HSV. HSV perpetuating the mold infection. In my sinuses, my face, my neck, and in my mouth.

Positive culture number 6 for HSV-1. But this time, I took over. Demanded I get put on 1500mg Famciclovir for 6 weeks. We need to get HSV to hide.

So between the anti-viral, and going to the dental office for cold laser therapy twice weekly. HSV has began to with draw from everywhere. The megadose of Famciclovir is helping.

The swelling is subsiding. The last ketamine treatment I cried. Why? All the pain was gone.

OFF

For once in the 5 years of my battle with this, I felt nothing. Knowing that I was right all along. Being discarded by doctors. Being treated as a drug-seeking lunatic. That I’m “making all this up” or it’s “self-inflicted”.

I feel like this has been one of the hardest challenges of my life.

Hepworth wants me to see a virologist to eradicate the remnants of the HSV. It’s still there, but my pain compares to the past 4 weeks has exponentially gone down.

There is the light at the end of the tunnel. I’m still standing. I didn’t give up. I’m still here.

Only time will heal the damage this has done to me over the years. I’ll keep fighting this till it’s over.