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
I send out a weekly digest with updates about our adventures. Click here to receive those updates.
You should write a book, Ana! 🙂May 29, 2017 at 7:14 pm
Aww… Thanks Erin! I hope to some day!May 30, 2017 at 8:59 am
That would be so awesome! I’d read it! 🙂May 30, 2017 at 3:38 pm
I would read that book!! 😀May 30, 2017 at 10:09 am
I know, right!?! 🙂May 30, 2017 at 3:38 pm
😂June 1, 2017 at 9:29 pm
So glad to see your blog post about this, I’ve been saying this for years since my story is similar to yours.May 29, 2017 at 8:09 pm
I had a bullseye in 1990 in Washington DC.
I had NO symptoms until exposed to more mold AND a priming event of a very difficult pregnancy in the year 2008. By all accounts my immune system kept my Lyme in check for almost 20 years.
I had a gut feeling I actually had successfully treated my Lyme, and even though all my LLMDS wanted to ratchet up my Lyme treatment, instead i flew out of state to see a Shoemaker doc. My gut feeling was right, and I had successfully treated my Lyme and cos and got well from CIRS with the protocol. And of course, used many other docs for all the other chronic illness issues.
Slowly, the Lyme community is finally taking notice that mold illness can be a factor, but it has been a long road. So thankful for blog posts like yours that will help people with this issue.
Thanks for sharing your story Lori! Very interesting! I hope more people like you start sharing their stories. 🙂May 30, 2017 at 9:00 am
Thank you for posting your story. I am praying for you and have rejoiced with you over the last few posts. What great news!
In reading your story I often wondered if you had been treated for mast cell activation disorder and POTs. Do you think mold avoidance reset your immune system and calmed your mast cells?
I’d love to hear your insight as our family is currently dealing with MCAS and POTs but negative Lyme tests and none of the major Lyme symptoms ( negative tests on everything actually… except POTs and the current medication cocktail for MCAS seems to be helping in addition to a strict diet and lifestyle choices).
Thanks for documenting your story. I appreciate it and pray for you as I read your updates.May 29, 2017 at 10:01 pm
Thanks so much for praying and following along Ashley! Yes! I don’t think it’s an exaggeration to say that mold avoidance cured my MCAS. I talk about it in a little more detail on my “mold avoidance” page. But yes! No more POTS and no more MCAS. I’m not taking any drugs or supplements for either of those things anymore.May 30, 2017 at 9:04 am
This is so well said, Ana. I often consider the miracle of our bodies, how God designed our bodies to heal themselves! So much of medicine is just getting all the “junk” out of the way, so our bodies can do what their programmed to do already. Certainly their are a lot of factors that go into why a person’s immune system acts the way it does, but I heartily believe mold is an all-too-common criminal that sneaks into the lives of so many people (is welcomed even, by those who see it as harmless/insignificant!) and robs them of the healthy immune systems they need to combat so so SO many health problems. People want cures, not changes. If I’ve learned anything from your blog, Ana, it is that change is necessary to finding a cure. As I found out with my own health, the more changes I can make to add wisdom, discernment, and discipline to my lifestyle/diet/health habits, the sooner and longer I find myself on the road of improvement.May 30, 2017 at 2:29 am
Thanks for sharing your thoughts Ruth! I definitely agree!May 30, 2017 at 7:30 pm
Very well written & helpful! I’m happy for your recognition of the lessening of symptoms! I’ll continue to pray!May 31, 2017 at 10:14 am
Thanks so much Mary Kay! 😊May 31, 2017 at 1:12 pm
Ana, loved this informative post!! You’re quite the expert now (probably you wish you weren’t LOL)! I especially loved the book list. Lately, I’ve been the mold police in my own home. I haven’t been feeling well since I had a cold, and then the pollen season is hitting Michigan really hard, but I saw some tiny mold specks on my bathroom ceiling above the shower and I had to get them gone right away!!! Then I went on a hunt and found some in the back of the toilet tank! Yikes!! So I attacked it with a vengence. I’m a real clean freak, but because of your story, I’ve been on the lookout and more aware of anything thats not pristine. So you see, your educating all of us!! I’ve so enjoyed getting caught up on all the posts. I’ve especially been intrigued by the setting up the van ones. Your bed looks so comfy (love the bedspread! How did you find one that you didn’t react to?) and the shower is so cool. I know the bed has all those cabinets, but I’m wondering if you have storage behind it (near the van opening) to store things like your chairs etc? That Sara is one smart cookie and I’m so glad shes been able to help you so much!! We’re still praying for you and praising God that you are doing so much better!! Way to go!! 🙂May 31, 2017 at 3:19 pm
I really think you are on to something, I really believe MOLD is the culprit to surfacing/awakening latent issues in the human body. Thank you for your vulnerability in sharing your heart, insight and journey.
Your posts are so inspirational and encouraging to many people. I pray your blog and FB page platforms reaches those suffering and looking for hope and healing. God bless you!.
Praying for you and Brett<3May 31, 2017 at 6:39 pm
Hello Ana! Just curious, how do you wash your clothes to decontaminate them? Ammonia? Something else? I think I may have already commented this on another post, lol. But if I did, I don’t remember which one, and I didn’t get an email notification saying you had replied, so I may never find it again! So I’ll ask again, and try to remember this page. LOL. Glad to hear you’re doing better. God saved my life from mold exposure too. Not quite in the same way, but it was definitely His hand that was in it. Now I’m just trying to figure out His will for getting better the rest of the way.June 3, 2017 at 1:23 am
It’s my understanding that ammonia is pretty toxic. We’ve never used it. We use Downy Free & Gentle Fabric softener which contains quaternary ammonium (a different substance entirely) that is supposed to bind to biotoxins.
I’m so glad God protected you and I hope you can find complete healing. 💕Have you read the Beginner’s Guide to Mold Avoidance?June 3, 2017 at 12:57 pm
I have not read a Beginner’s Guide to Mold Avoidance. I wanted to go camping at first when I was first sick, but sadly it’s just me, no husband or anyone to take care of me. And I had really severe Leaky Gut (to the point where the only thing I could get was fresh, baby-food-soft-level boiled vegetables and unseasoned chicken) (that’s healed now, praise the Lord!) and I needed a kitchen and constant fresh food so badly, that camping was out of the question for me.
Then the Lord brought me to a house that was mold-free, so I just ended up living there.
However the treatment I’ve been doing on my own has stalled, so I’m kind of re-evaluating. Maybe I should do mold avoidance….. 😉September 26, 2017 at 12:18 pm
I think it might be both considering everything you said. Maybe either one could be easily taken care of by the immune system, but at the same time, they are just too much. Maybe.June 22, 2017 at 4:43 pm
I was diagnosed with Lyme disease in 2004. I was given antibiotics, which seemed to help. However, I still suffer from some of the symptoms, such as chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. The inability to walk right etc, are temporary and generally happen when I am really tired and have been working hard. I lost touch with reality. Suspecting it was the medication I Went off the antibiotics (with the doctor’s knowledge) and started on Lyme disease natural herbal formula I ordered from GREEN HOUSE HERBAL CLINIC, I spoke to few people who used the treatment here in USA and they all gave a positive response, my symptoms totally declined over a 6 weeks use of the Green House Lyme disease natural herbal formula. I’m 70 now and doing very well, the disease is totally reversed! (Visit their website) I am thankful to nature, herbs are truly gift from God. I can now go about my daily activities and the pain is greatly diminished. Don’t give up hope, fellow sufferers. Share with friends!!March 23, 2018 at 6:32 am
Well,I came here the long way round. I was suffering from similar problems and suspected mold. I read some of the books you did, but also one other. (Wish I could find my info. on him….) He suggested a dehumidifer as a first start for those who could not move or go on vacation. The reason is that mold grows in places with over 50% humidity. (Stadler Albert (Probably misspelled that) at Costco was one). It was my only option and I got it because of a water leak (crazy, but true) After getting the dehumidifier, I could see I was getting better…… so reducing my mold exposure was going to be important no matter what else I did. (I googled to find names, prices, etc. Chose the Costco one because I could return if it didn’t work) (Discovered that the bathroom I used it in was always reading humidity of over 80%, which causes mold to grow so fast!!!)May 18, 2018 at 10:45 am
Although there are too many of us suffering from similar symptoms, it still gives such validation when you read of someone’s experience and thoughts that are so like your own. I’m in the health field (human and veterinary – and yes, dogs suffer from both also), and I agree with your hypothesis. If one has Lyme and mold, treating Lyme with antibiotics is like throwing gasoline on a fire (the mold)! Antibiotics are made from mold/fungal toxins (even the synthetic ones imitate this). It makes sense to address the mold first and see how much the body can heal from there! I also have Lyme and Mycotoxosis (and from Washington too!). You’re so blessed to have a devoted husband; God bless him. Mine (of 30 years) left me disabled. I’m still trying to find a good place to live. Would love to know where you’ve settled! Best wishes.April 2, 2019 at 7:25 am