The following is an account of what happened to Janie Bowthorpe due to an acute exposure to mold. The same thing can happen to people who live in a moldy house or work in a moldy building…and in fact, the latter exposures are far more common. 

An environmental accident 

In 2013, I was leaf blowing for 45 minutes, and the leaves were wet as was the ground. When I finished, I felt like I had been hit by a ton of bricks with horrific fatigue. I was in bed for THREE months with an overreactive immune system with debilitating fatigue.

Turns out I had been inhaling mold spores that entire time, blowing those leaves to the street. After a few weeks of extreme illness and fatigue, I went to a doctor who started the same treatment that one would have if they had an allergy to mold—injections. And by the 4th month, I was slowly starting to feel better.

But…little did I know that the mold was still in me. Why? Because I have what’s called a mutation in the HLA-DRBQ gene–which means I’m part of nearly 25% of the population whose immune system is unable to fully get rid of mold. I need extra help.

But I didn’t know that I was unable to get rid of mold in my body

All I knew is that problems started to creep up in late 2014–rising copper for one (though I didn’t realize it) and crazy iron levels. I was having problems breaking down my exposure to heavy metals, called methylation, and didn’t yet know that either. But the symptoms were there in the form of hair loss, crazy iron levels, and high anxiety.

2015 from hell

Problems were intensifying in 2015–hair loss was increasing and I was having weird ruminating thoughts in my brain. By April, after someone told me to test my copper levels– there it was. Not only did I have high copper (and low zinc), but I also had high lead. Both a blood test and a hair test proved it. I was shocked.  That explained the hair loss I was experiencing, plus the weird brain issues. I started a detox that lasted six very long months of fatigue hell, and that’s when I discovered my mitochondrial were very damaged via an Organic Acids Test (by Organix). After that detox, I got Small Intestinal Bacterial overgrowth, then I got candida from hell that last 5 months into 2016. I still didn’t put two-and-two together that all this was due to the stress on my body from still having mold inside.

2016 from hell

This year started out rocky–continuing to get rid of the candida was challenging, and I crashed easily if I tried to do anything beyond a certain point–and I mean BAD crashes that sent me back to bed with indescribable fatigue. Then in Summer of 2016, discovered copper was high again, and my mitochondrial issues were even worse as shown by a second Organic Acids Test (by Great Plains) and my symptoms. So this next detox was debilitating as well. I had to start taking HIGH amounts of CoQ10 plus many other mito nutrients just to survive (which today I’m still on and can’t get off). I had very easy fatigue and my abilities to do much were limited. And I started having issues with word recall…

New information

Finally in the Fall of 2016, via very unique testing, I discovered that the mold was still in me creating havoc due to finally discovering I had that HLA gene issue! All this time and I didn’t know it. And I had definite brain inflammation symptoms as revealed in the second OAT test I did a few months previous. Brain inflammation is the result of the lingering mold still in me! That explained the word recall I was noticing.

After doing a lot of research, I found out about an “Rg3 nasal spray” to combat brain inflammation, then found a doctor to prescribe it for me. It worked.  Plus I started a prescription treatment via a doctor with Cholestyramine to get the mold out…except that I didn’t understand at the time how to do it all correctly…so I wasn’t using it correctly.

2017–a revelation

By 2017, I was still a HUGE mess. The inactive thyroid hormone Reverse T3 (RT3) was extremely high, so I had to move over to T3-only. I had figured out on my own via research on how to improve methylation breakdown of heavy metals by increasing my folate levels, but still had easy fatigue plus terrible, terrible crashes if I did too much. I honestly felt I qualified for the diagnosis “Chronic Fatigue Syndrome“, also called Myalgic encephalomyelitis (ME), in Europe. And it was very depressing.

THEN, while in forums in June of 2017, someone gave me a name for all this: Chronic Inflammatory Response Syndrome, aka CIRS. BINGO.

CIRS

Giving me a name changed everything.

I learned that CIRS occurs when one’s immune system is continually trying to fight the internal mold, thus chronic inflammation, but not succeeding in ridding the body of the mold due to that HLA gene. And both the continued mold in me, plus the chronic inflammation, wreaks havoc. The mold and chronic inflammation can explain limited energy, methylation problems, and high RT3. And the biggest revelation:  I had never been told to aggressively attack the inflammation.

Capillary Hypoperfusion (a form of shock)

Turns out that with mold issues, one can also have “capillary hypoperfusion”. It means reduced delivery of oxygen via the capillaries, and that means my mito can’t use glucose properly for energy, and it causes wasteful burning of glycogen. So I can crash easily, plus take many days to recover!  Finally a explanation for my mito problems, and why I benefit from high dose of CoQ10 ubiquinol. The initial solution are certain exercises that I have start very low with so as not to crash. Adiponectin, a protein hormone, is increased by doing this, which helps the body to start burning fatty acids, which are three times the energy.

Treatment

Via research, I immediately got on a massive amount of supplements to tackle and control this chronic inflammation. They included (part in the morning; part in the evening)

  • 8-9 capsules of Curcumin
  • Fish oil, 2 T a day (I got the lime flavored kind)
  • Proteolytic enzymes (aids in the breakdown of protein, but very anti-inflammatory)
  • Meriva by Thorne (Sustained Release Curcumin Phytosome Supplement; anti-inflammatory)
  • PolyResveratrol by Thorne (Enhances liver function and anti-inflammatory)
  • Milk Thistle (the active ingredient Silymarin is both antioxidant and anti-inflammatory properties)
  • Berberine (to control insulin–the latter which is inflammatory)

With study, I also learned how to better use Cholestyramine (CSM) (a binder) to get this damn mold outta me and instigated those methods. The problem with CSM is that it’s recommended to use four times a day, but it can pull out nutrients. There was no way I could do four times a day with taking T3 three times a day, and important supplements twice a day, plus liquid CoQ10. So I figured out a better way and only using it three times a day—I take CSM with extra water upon waking.  An hour later or more, I eat, and when finished, it’s nearly two hours after the cholestyramine, so I take my supps and first thyroid med.  I repeat the second T3 about two hours later, then have time to finish my Coq10 before my second dose of CSM around 5 pm. A third dose of CSM around 9 pm.

I learned to avoid sugar and grains, as rising insulin promotes inflammation. I found that out the hard way, too. A week before I learned what I had, I had been eating a high amount of sugar in cookies I had made for visiting family. Within two days, I plummeted into physical exhaustion, and had NO idea why..at first. Now I knew. The inflammatory properties of insulin sent my chronic inflammation sky high.

Treatment will last several months and the odds are high I WILL recover. Some things may take longer than others, like my damaged mito.

I’m telling this story because if YOU are around mold a lot (I was never mold sensitive but some are), and you don’t feel quite well, or have pesky problems that don’t seem to go away, this can be why. http://www.survivingmold.com/docs/Berndtson_essay_2_CIRS.pdf

See Janie’s 14 point Summary about Mold Illness she compiled, which also includes the labs most do to detect this issue

For further reading: 

http://biotoxinjourney.com/

http://www.survivingmold.com/