Surviving a CRP of 169, while battling a superinfection

[crowneagle]

I never experienced a true weggie war, until now and like any war, you have to have a war correspondent. I kept a diary of the entire three month fiasco, at least during the parts I was conscious.

It started Thanksgiving weekend, when a flare hit my brain. Was with family and friends, when all my neurons started misfiring. I was still three months away from my next RTX infusion. 10% of weggies have CNS involvement, as the presenting feature. Called my neurologist for a pred taper and I kicked it up a notch, by adding 300mg of fisetin. I keep both in stock for emergencies. Both preds and fisetin suppress Phosphoinositide 3 kinase(PI3K) and readily cross the blood, brain, barrier. I'll explain PI3k in depth in a future post. I battled this relapse into January, with nightly issues with my eyes. Kind of nerve wracking, since WG made me go blind in one eye eight years ago, I did regain my sight after a trip to the ER. With a developing case of oral thrush, I requested a bottle of Nystatin from my vasculitis doctor. He sent me a case. Are you trying to send me a message? lol He has a weird sense of humor. Maybe, he knew what was coming.

By Jan 9, my relapse began melting away. But, I started showing signs of a URI. A Covid test came back negative. I thought I had the flu. Developed a cough, along with a loss of appetite and general malaise. Figured I only needed some time to feel better. By the end of January, I wasn't improving. Saw my PCP on Feb 5. A chest x-ray was negative. He put me on a Z-pack. I still didn't improve. Contacted my PCP again and I got the brush off. "Your chest x-ray was good!"

For the rest of February, I continued to slowly, almost imperceptibly, go down hill. Was losing weight, getting weaker, along with daily fevers, which promptly broke with Tylenol. Everytime they broke, I would be drenched with sweat. By the end of February, I was barely functioning. My family convinced me to call an ambulance. I have a love hate relationship with ambulances. Kinda embarrassing getting carted out in an ambulance and I always wonder if it's a one way trip.

When I arrived at my community hospital. The ER doctor exclaimed, "You're a very sick man!" My CRP was 122. They diagnosed me with a superinfection, comprised of pneumonia, a sneaky case of Covid-19 and Herpes-1, which they told me, it can go to my lungs. Had nasty sores on my face. By this time, I also had a raging case of oral thrush, which confirmed my immune deficient status. Thankfully, I got a private room. Gowns were the order of the day.

I ended up with the head of infectious diseases and a firebrand pulmonologist. They put me on Ceftriaxone, Doxycyclin, Enoxaparin, Acetaminophen, and Plaxmovid. I still had enough wits about me to carry some veto power, which I promptly used in refusing a systemic antifungal. I'm a swish and spit kind of guy. The pulmonologist questioned whether WG was involved and debated using prednisone. I quickly shot that down. I know what happens to weggies, while using immune suppressants and fighting a raging infection at the same time. My IgG was very low and I wasn't too worried about WG. Don't ever be afraid to use your veto power. I got the impression the doctors feel uncomfortable making all the decisions sometimes. We have the final say. The head of infectious diseases told me he felt comfortable with my knowledge. He was just happy he didn't have to make the call.

My infection peaked on 2/27. I passed out in the bathroom with a crashing BP and a raging fever. My CRP peaked at 169 and I don't know how they fit so many medical personnel in my room. Didn't find out until later, but I could have gone septic. I was restricted to bed after that with an alarm, if I tried anything stupid again.

The next day, I turned the corner. The superinfection had thrown me his best and final shot. A cardiologist came in and said I didn't need the heart monitor. "There's nothing wrong with your heart!" But, they kept the monitor on me, if only to monitor my previously low blood oxygen levels. The fevers let up and I inquired to my doctor what would it take to get out of that place. "No fevers, without any Tylenol." was his answer. I passed the test the next day and was discharged on Mar 1st.

I had lost thirty lbs and I was weak as Captain America, before they did the experiment on him. It was a three month battle, from start to finish. My friends and family confided in me, they didn't expect me to pull through. But I'm a weggie, the strongest people on the planet.

So, what's going on now? I've gained back ten lbs. I'm eating the food, faster than people can bring it. Have some residual oxidative stress in my brain, which I treat with PQQ. It has 100 times the anti-oxidant power of Vit C. I'm taking it once a week. Too many anti-oxidants are just as bad as not enough. With my still very low IgG, my rheumy says she's not even thinking of RTX for 3-4 months. I was originally scheduled for beginning of March. Low IgG with RTX infusions can cause hypogammaglobulinemia. Also found out I might be resistant to sepsis from my genetic profile. Avacopan might help those prone to sepsis because sepsis is closely associated with an elevated C5a. "During sepsis, the complement system is strongly activated, producing large amounts of C5a. C5a is one of the most potent inflammatory peptides." Less I digress. I'm actually gently boosting my immune system. Instead of an IgG in the 500's, I'm shooting for 700. There is no sign of WG. He's sleeping like a baby. Maybe there's a sweet spot, where IgG is high enough to avoid infection but low enough to stay in remission. Why are doctors weird about closely monitoring IgG? Now I'm hypothesizing. Don't need that! Where are my doughnuts?

DISCLAIMER: Nothing in this post is to be interpreted as advice. Everyone's body is different. What may be good for me, may not be good for you. Knowledge doesn't necessarily translate to clinical treatments.

[Pete]

@crowneagle

Wow, Tom! That was quite the episode. My last CRP a year ago was 12. Normal is under 10. Glad you’re on the mend.

[crowneagle]

Thanks Pete. It's definitely not something I would want to go through again. I walk around my house, spraying Lysol on everything I touch. I'm in anti-infection mode.

[CapeKay]

Wow is right. That is one scary story. Glad you are feeling better.

Kathy