Unbreakable

My dad is number twenty seven on the list of people who I talk to about my health. On one of my medical trips he ordered a greasy burger with onion rings from the hotel restaurant. He got sicker than I’ve ever seen him, stuck in bed (and on the toilet) the entire week while my mom and I shuttled to and from the clinic. His takeaway from this event? “I knew I shouldn’t have put that piece of lettuce on the burger. I just knew it would cause problems and look what happened!” The culprit was… the piece of lettuce.

So when faced with the opportunity to run my new theory by him I should have known something would get lost in translation. He actually took it pretty receptively suggesting that even the craziest of people could find merits in my discovery. We parted ways until later that night when he came home and said, “I told a friend of mine about your chlamydia. That’s a tough one.” Pardon? What chlamydia? I never said chlamydia, I said can-di-da!! Chlamydia is an STI! “Oh that’s right, you said candida. Well don’t worry I only told one person.”

The Definition

Candida is a fungus that can grow anywhere in or on the body. Most people have a little of it in their gut but it took full advantage of my compromised body years ago and became a major, invisible problem. It took over with my immune system so weak that it couldn’t react with consistent symptoms. So a typically non-threatening pathogen evolved into the very serious, invasive candidiasis. (NOT chlamydia)

The Discovery

I started thinking about the only known cause for NAM: statins. What do statins have in common with any conventional treatments I’ve tried? Statins lower cholesterol but have unintended anti fungal properties as well. I’ve never taken them but I found out that IVIG (a typical treatment for rheumatological diseases) can also reduce the presence of certain fungi. I tried IVIG three times with zero improvements. Two out of the three times were very large doses and I got aseptic meningitis. Less than 5% of people experience this side effect which entails the swelling of the inner lining of the brain and an excruciating headache. We’ll come back to this.

Okay, IVIG inadvertently disrupts some types of fungus. Have I taken anything that fuels it? The very first conventional intervention for many rheumatological diseases is usually corticosteroids. I followed Northwestern Memorial’s reputable protocol of steroids for the first 9 months or so of my disease. First oral prednisone, then a higher dose, then oral methotrexate, then injectable.

None of these relieved any symptoms but recently I learned that corticosteroids- the ones I swallowed and injected into my gut for 9 months- can cause severe candida infections. They suppress or turn off your immune system and can be lifesaving for short term health problems. Prolonged use like mine however, allows pathogens like fungi to flourish without your natural defenses to keep them in check.

Let’s go back to those attempts at IVIG- I had been on steroids for 5 months when I did my first infusion and got the aseptic meningitis. Aseptic meningitis also occurs when candida fungus spreads from somewhere in the body to the brain. I think that prolonged use of prednisone and methotrexate caused fungi to flourish in my body. Then IVIG killed some off and pushed some to my brain in the process (IVIG crosses the blood brain barrier), likely triggering the awful meningitis side effect. My immune system continued to be suppressed by the steroids for four more months after that first infusion, giving the fungus a comfortably compromised environment to set up shop again. My body crashed.

Over the next few years we discovered the lyme disease, which prompted use of antibiotics a few times. No improvements on these either but each round killed off what little good gut warriors I had in reserve; they gave candida even more unchecked power. I developed a wet cough overnight that would choke me with sputum… every, single, night. That’s not a symptom of my disease so my doctor ordered chest x-rays and didn’t see anything at all. So I’ve just lived with it indefinitely.

Then I did an adipose stem cell transfer last year (thanks to many of you!!). I felt great coming out of surgery; I remember leaving my cousin a voicemail because my voice was super strong. Fifteen days later I went to the ER because I couldn’t breathe and they diagnosed me with pneumonia, “likely bacterial”. They immediately put me on antibiotics. I seemed stabilized at first but took a scary dive and was suddenly in the fight for my life.

I am so grateful to be alive but I was equally perplexed by how it went down; seven years with NAM and I have never been hospitalized or even had a minor cold before this pneumonia! I know I didn’t get bacterial pneumonia from the transfer because my symptoms didn’t start until two weeks after the actual procedure. But my stem cell surgeon had me on strong antibiotics for one week after the procedure to prevent infection.

Those post stem cell antibiotics wiped out any remnants of good gut bacteria again. The fungus went wild, again. But this time I think it doubled down in my lungs and triggered fungal pneumonia. Crazy, right? Or maybe perfectly logical in hindsight. I didn’t even know fungal pneumonia was a thing. Apparently it’s extremely difficult to diagnose without cutting the affected lungs open and it looks the same as bacterial pneumonia on an x-ray. It also doesn’t respond well to antibiotics. Everyone thought my recovery was so rough because of my autoimmune disease but I now believe that I nearly died because my fungal pneumonia was misdiagnosed and erroneously treated as bacterial pneumonia.

By the time I got to this point down the rabbit hole all I could think was: holy shit. Holy shit, what do I do? Mayo won’t let me see anyone in infectious diseases- I’ve tried several times- because they require a positive test result for a referral to that department. And the other Mayo specialists I see won’t order the infectious disease tests because my symptoms aren’t text book. So I looked up natural, candida-killing supplements and ordered colostrum powder to see what would happen. I felt better for the first few days and then regressed so I knew natural solutions weren’t strong enough but that I was on the right track.

The Destination

If my chronology is correct this fungus has been thriving off of me for over six years. My incredible ND used Autonomic Response Testing to confirm that I have invasive candidiasis. I’m finishing my third round of anti fungal prescriptions tonight and will likely need to do several more rounds in conjunction with my gut rebuilding protocol before I see any big changes. They’ve already decreased my sputum excretion by 30% and I haven’t had a massive hives breakout since we started. Some days I’m drained some days I’m great. A few symptoms I couldn’t explain 4+ years ago have come back: sweating through my clothes during the day, random skin peeling, left eye irritation… all symptoms of a fungal infection.

Invasive candidiasis is a major obstacle that has never been addressed before so there’s absolutely no downside to this discovery. My symptoms indicate that my body is fighting the battle now that it has the correct pharmaceuticals to back it up. Writing out this wild story reaffirms something I’ve always known: my body is unbreakable and absolutely capable of healing. Pumped to let you in on one very good thing that happened in 2020. More to come!

Eureka

It hit me like a ton of bricks on a regular afternoon at home. My fingers ran wild over the keyboard to keep up with the flood of medical questions that now suddenly needed answers. After a few hours I couldn’t find anything to debunk my hypothesis. Am I crazy, or did I just figure out what’s making me sick?

⏮ To recap: we know that this ordeal started with Lyme co-infections ~8 years ago. No bullseye rash, two false negative Western blot tests, and one *very* positive urine test.

⏩ Lyme bacteria triggered a rare autoimmune disease called, polymyositis– essentially it’s the destruction of the trunk muscles. I was relatively stable (walking, working) for ~1.5 years. And then I crashed. Within three weeks I became almost completely immobile. Something provoked a drastic decline in a very short period of time.

⏭ Over the following six years rheumatologists discovered 12 or so variations of polymyositis, so when I became a patient at Mayo they updated my diagnosis to Necrotizing Autoimmune Myopathy (NAM). It’s even rarer than polymyositis and the only known cause is the prolonged use of statins, which, I’ve never taken.

▶️ Two months ago I started thinking more about NAM. Are there any similarities between statins and any of the conventional medications I tried very early on?

Yes, yes there are. And then it All. Started. To. Click. One of my doctors at the Sophia Health Institute validated the merits of my hypothesis and I’m undergoing treatment right now (it’s treatable!). This will undoubtedly take a lot of time to overcome but we’re definitely on to something. Just four days on a new prescription and I experienced a duller version of every one of my symptoms in the same day, for the first time in 8 years. Prior to this they’d appear sporadically, one or two at a time, and seemingly isolated from one another (making it impossible to identify a pattern). Having my body respond to one new variable with every signal it has is a good sign.

I’m not ready to share the specifics yet; it’s too early in the experiment. But you can count on a full report when I have more results. If it’s good, we party! If it’s a goose egg, I’ll have the next trial underway before you can cancel your membership to the Strugglebus Science Fair. Regardless, thank you for sticking around… I couldn’t do this without the ocean of grace that you’ve afforded me in my healing journey. More to come!