Day 72 | So, is it Lyme Disease or Mold?

Today was a successful day of mold avoidance. I did laundry for hours and Brett got some work done. Later, I had a reaction near the RV dump station and had to decontaminate (wash up and change clothes). RV septic systems are often contaminated with mold.

It’s crazy to think that this is our normal now. Camping full time, sleeping in a van, doing laundry by hand, avoiding mold and decontaminating over and over again. I never could have imagined that we’d be doing this.

Even crazier is that this bizarre lifestyle is the medicine that is finally healing my broken body. It’s ridiculous if you really think about it. Could clean air and lots of showers really be a more effective treatment for chronic Lyme Disease than IV antibiotics?

I don’t know the answer to that question. I don’t think anyone can answer that question with certainty at this point. The science just isn’t looking at this phenomenon yet.

As dangerous as this is, I’m going to speculate for a minute. I am not really that different from most other chronic Lyme Disease patients. I grew up in Lyme endemic upstate New York, tested positive on a Western Blot, and suffered from the classic symptoms– severe chronic joint pain and neurological pain, sound and light hypersensitivity, debilitating fatigue, neuropsychiatric problems, POTS, seizure activity and dozens more. I herxed like mad after starting antibiotic treatment and even got the classic bullseye rash at one point.

I was bed bound for years and relied on a wheelchair when I needed to leave the house. Like many sufferers, I had moments of wondering in terror whether this Lyme Disease would kill me and yes, moments of wondering if it would be better for everyone if it just hurried up and finished me off.

I was sick. Desperately, desperately sick and it was this odd practice of extreme mold avoidance that finally showed me the way out. So naturally, I have a strong suspicion that many other serious Lyme Disease patients might also benefit greatly from this strange practice.

It seems that not everyone who gets infected with Borrelia becomes severely ill (1). Some may experience acute illness at the time of infection and then recover with a course of antibiotics. While it appears others may be able to carry the infection without suffering any illness at all. Their immune systems seem to be able to deal with the pathogen on their own.

My doctor, one of the top Lyme specialists in the country, won’t treat people who test positive but are asymptomatic. Why? Because the goal of treatment is remission of symptoms not total eradication of the bacteria. The idea is to get the infectious load low enough that the immune system can keep it in check. Some people seem able to do that right off the bat. But why not us Lymies? Why do we suffer devastating symptoms and disability?

What’s the difference between those who get devastatingly ill and those who stay relatively healthy if both are infected with Lyme Disease?

We know that the reactivation of infections that many healthy people carry without a problem can happen in chronic illnesses like ME/CFS (2). Most people’s immune systems can keep viruses like cytomegalovirus and Epstein Barr under control easily but in ME/CFS patients something changes that causes these infections to become problematic once more. This seems to indicate some kind of immune dysfunction. Something is further upstream than the infections.

What if the same is true for Lyme Disease? What if tick borne pathogens only become a serious problem when someone’s immune system isn’t working properly? What if something else is really at the root?

My theory is that, in my case, mold toxicity was that something else. I was living in a very moldy apartment in Seattle when I first fell seriously ill and various mycotoxins have been shown to cause immune system supression (3). What if the toxicity in my body activated a latent Lyme Disease infection?

After all, my illness didn’t start right after a tick bite even though I’d probably been bitten dozens of times all throughout my childhood. My doctors always said they suspected I had been infected for many years before I fell seriously ill. So why didn’t I get sick until I moved into that moldy apartment in Seattle? Perhaps my immune system was able to keep the infection in check?

Maybe my body became overwhelmed with toxicity in that apartment. And maybe the toxicity made it a more hospitable place for the Lyme bacteria. That certainly seems like a possibility.

Now, I didn’t come to mold avoidance expecting to cure my Lyme Disease. I came to mold avoidance because I had developed life threatening Mast Cell Activation Syndrome after moving into another moldy apartment in September of 2016. At the time, I assumed that the Lyme Disease was making me susceptible to mold and that the mast cell problems somehow stemmed from that.

In my mind, Lyme Disease was still my main problem and mold was just the icing on that terrible cake. All I wanted to do was find a way to stop the anaphylactic reactions while I waited to see a mold specialist. The drugs, the mast cell stabilizers and the strict diet weren’t working anymore and I was desperate. So we flew out to New Mexico and amazing things started happening.

Not only did mold avoidance completely resolve my Mast Cell Activation Syndrome. My Lyme symptoms also started to lessen and then fall away one by one. I could not believe it! Suddenly, I found myself hiking and running and wringing out laundry by hand! If that had happened spontaneously, it would have qualified as a miracle. But it didn’t happen spontaneously, strict mold avoidance was accomplishing it.

My hope is that sharing my success story might inspire others to experiment with extreme mold avoidance as a treatment for Lyme Disease. If enough of us try it, we may start to get some answers.

I’ll never know for sure whether I could have recovered from Lyme Disease with mold avoidance alone. However, if mold toxicity really was a major player from the start, it seems at least plausible that mold avoidance could have reduced my need for antibiotic therapy. Who knows? Maybe I would have healed even faster while taking fewer antibiotics and having a better quality of life.

I can’t claim to know the answers to any of the questions I raised in this post. The sad reality is that the research on this phenomenon is almost non-existent and we can’t really say anything with certainty.

The beauty of mold avoidance though, is that you don’t need to wait for certainty to take action. It’s a testable hypothesis and individual sufferers can test it for themselves. It doesn’t matter that you don’t have the power to make double blind placebo controlled studies happen.

I do wish we had more studies, but thankfully, you don’t need those studies to find out if it will work for you. You can conduct a small two week experiment on your own. The same experiment that I and other chronic illness sufferers such as Sara Mattson and Julie Rehemeyer went to Death Valley to conduct. And what if, maybe just maybe, you get the same results? You might be running again!

Note: If you are interested in learning more about this experiment I highly recommend you read A Beginner’s Guide to Mold Avoidance. The experiment is outlined in great detail there. I’ll be the first to admit that some parts of the book sounded absurd to me at first but I’m really glad I followed the instructions so closely. Avoiding cross-contamination, following decontamination protocols and learning about the locations effect turned out to be really, really, really important. Like a fellow Lymie once said, “If it works. It’s not weird.”

I also highly recommend consulting with Sara Mattson. She is a great teacher and coach who used strict mold avoidance to recover her own health. Her mentoring is a big part of the reason I’m recovering so quickly. Brett and I were able to learn from her experiences and her encouragement helped us through the days we felt like quitting. I’m sure the journey would have taken us much, much longer if we had to figure everything out on our own.

For Further Reading:

Back From the Edge: How One Man’s Discovery Brought Him From Desperately Sick With Chronic Fatigue Syndrome to the Top of Mt. Whitney in Six Months
Camp Like A Girl: Finding Health & Wellness in Nature
Why I Chose Mold Avoidance
Following in Erik Johnson’s Footsteps: My Journey from Devastating Sickness to Eating Tacos, Drinking Booze, and Climbing Mountains

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