The simple and most honest answer to that question is: I don’t know exactly why, I just do.
Some people might lean towards the side of believing my body is the problem. Something about my body is broken. Maybe I have bad genes that make me a poor detoxifier. Maybe my immune system is jacked up and overactive or maybe my limbic system is misidentifying benign substances as threats. After all, most people can tolerate environments that would cause me to relapse quickly.
Other people might lean towards the side of believing that the environment is the problem. Industrial waste, nanoparticle pollution and man-made chemicals are upsetting the microbial balance of our earth and causing molds to become more toxic (as they are processing and interacting with the pollution). After all, we live in a country where radioactive waste from the oil industry is used as a de-icer, fertilizer runoff is feeding toxic algae blooms, and nanoparticle pollution is a growing concern. There’s no question that chronic illness is on the rise. The LA Times even published an article about how “Millennial’s escalating health problems raise economic concerns.”
I’m somewhere in between these two explanations. Most days, I believe my body IS broken but not because anything is fundamentally wrong with it. My body is broken because of extended and repeated exposures to particularly problematic toxic molds (and possibly other toxins). Now my body is hypersensitive to certain kinds of toxicity, even in amounts that don’t cause problems for most other humans. This all happened because the environment really is becoming more toxic. I may also have some predisposing factors but I don’t believe the human body malfunctions for no reason.
I do think certain buildings and locations are objectively toxic and harmful to all people (most likely because of things careless and greedy humans have dumped into the environment.) This however, does NOT mean that, if I am doing poorly somewhere, I automatically assume the place is horrible and dangerous.
No. I just acknowledge that the place is over-tolerance for me on that particular day, at that particular point in my recovery. I can try again another time. My reactivity level does change and I can now tolerate many places I couldn’t have set foot in before.
I wanted to share a quote from some recent correspondence because it explains the nature of my recovery and how I use my ongoing reactivity to stay well:
I’ve been able to regain an incredible amount of health, far beyond what I imagined was possible when I was laying in bed and using a wheelchair. I am fully functional, full of energy and symptom-free most of the time. However the recovery path has been quite bizarre and the recovery itself is still fragile. It has to be maintained in a very particular way.
I was diagnosed with Lyme Disease in 2012. I spent several years mostly bed-bound and suffering intense physical pain, extreme sound sensitivity, constant nausea, debilitating fatigue and severe psychiatric symptoms (among dozens of other symptoms).
In 2017, after many failed treatments and disappointments, I stumbled upon a patient community that claimed that scrupulously avoiding toxic mold had brought incredible relief from symptoms, deep healing, and even remission in many cases. That was more than I could say for any of the treatments I’d tried!
It sounded kinda kooky but I had recently developed mast cell reactions to dozens of foods, beauty products, chemicals and natural substances. It was becoming life-threatening and we were desperate. The patients seemed reasonable enough and the approach they described was easily testable. It was set up like a science experiment. We wouldn’t have to do it on blind faith. If it worked, we’d know. The doctors had failed me and I felt I had nothing to lose. So we set out to the desert without any belongings from our current (potentially moldy) residence to test the crazy theory.
The results were beyond anything we could have expected. Within 6 months I was hiking, biking, driving, cooking, eating all sorts of foods, using scented shampoo again, and feeling like myself for the first time since 2012.
I share my backstory to explain this…
When I was extremely ill I had to budget energy very, very carefully. An hour of conversation could leave me completely drained and cause a spike in pain and other symptoms. Even brushing my teeth was a ridiculously painful effort at times. Anything I wanted to do, no matter how simple, cost me. I always had a price to pay.
Thank God I no longer have to operate under such oppressive limitations! I am so grateful! My world feels enormous compared to what it was before. I do however, still have limitations. Instead of having to budget energy, I have to budget toxic mold exposures and “bad” city air exposures.
I like to think of it like a bank. When I spend a lot of time in really pristine air, usually away from civilization, I am saving money in the bank. When I go into the city (some cities are worse than others) or visit a moldy building etc. I am spending that money. If I have a lot of money in the bank, I can spend it and maintain my health. But… if I spend too much, too fast (without replenishing the savings) I can find myself in a really bad place. I don’t know why it works this way, but this is just how it is for me and for countless other patients I know who have achieved remission though avoiding mold.
It’s okay if you think this is weird or hard to believe. I think so too! I’m always doubting how all of this could be true… But I don’t have the luxury of doubting for very long because I keep running into the brick wall of reality over and over again: this is how my illness/recovery works whether I like it or not.
Maybe someday when there is more research there will be another solution. For now, this is how I have to play the game if I want to be healthy and happy.
So that’s where I am right now. I really do believe that I will be able to gain more and more resilience over time as I continue to heal and detoxify. But even if this is all I get and the limitations always remain, I will have no regrets. As I said, it’s already been more than worth it.
I’ve only recently discovered your website and I am so incredibly grateful for it. It’s so important for us to have experienced, reasonable voices to which we can refer family and friends. So we don’t sound crazy alone. I love the fact that you acknowledge your learnings sound crazy but that experimental living proves them true regardless. You give me hope. I wish you wellness!March 5, 2020 at 7:34 am
Thank you so much for this comment, Kelly! I really appreciate your encouraging words. I wish you all the healing in the world.March 5, 2020 at 11:14 am
I am so, so happy for you. You look so strong and so joyful – yay!!!!March 5, 2020 at 8:57 am
Thank you so much, Elizabeth!March 5, 2020 at 11:14 am
i believe you have a smart, healthy body and it is warning you to stay away from poison. mold and many chemicals like febreeze and dryer sheets and axe are poison to me and i am so greatful my body warns me to stay away. i believe if i didnt avoid i would end up with cancer or other problems in the future. but im not a scientist. i just believe these thoughts that come to me. and like you i am very happy where i am compared to where i used to be.March 5, 2020 at 9:09 am
I’m glad to hear you’ve made progress and are happy with where you are Laurie. The good news is that it seems like when we learn to identify and avoid some very specific biotoxins reactivity to things like axe, febreeze and dryer sheets fades away. Not that those things are good for us… Of course they aren’t! But they are secondary and may not need to be avoided so scrupulously if the root cause is being addressed.March 5, 2020 at 11:18 am
Thank you for your transparency.March 5, 2020 at 7:32 pm
Ana, I am so glad that you are blogging again and that mold avoidance is helping you so much! We may not have the science for why this works, but how wonderful that it does! I also have MCAS, and I know it can seem crazy to outsiders that I can be so hypersensitive. I pray that one day you and Brett will be able to put down roots, have stability, and not be on the move so much, but I also pray this blog gives you a sense of community as you navigate this season. May God give you the strength to keep pressing on!March 7, 2020 at 2:17 am
Thank you so much, Lauren!March 31, 2020 at 2:18 pm
Hi Ana – I also am very happy that you are blogging again & that you continue to be happy & healthy. Are you still moving around ir have you found a place you can call home?March 8, 2020 at 1:19 pm
Thank you so much Mary Kay. We’ve finally landed somewhere and I will update about that soon. 🙂March 31, 2020 at 2:20 pm
Oh Ana! It is so good to hear this most recent chapter of your testimony. I remember those dark years of mystery pain followed by Lyme diagnosis, followed by, well you know. But Glory be to God! He is so faithful and your testimony is a welcomed reminder that he does hear and answer prayer, and that NOTHING is impossible for Him.
Thank you (& Brett) for sharing your life with all of us via this blog. It is wonderful to see your smiling faces, and hear your hearts and be reminded how to be praying for you.
Con mucho amor,March 8, 2020 at 5:34 pm
Miss Jones! It’s so good to hear from you. Thank you for taking the time to share this loving comment. Thank you for your prayers! Love you!March 31, 2020 at 2:18 pm
Dang. It looks like I am all caught up. It also looks like I missed the part of where you went after the house you waited so long for did not work out. I will go back and see if I can find out what you did and where you are living now. I recall reading about purchasing some land and a canvas tent?? But, I do not trust my memory.March 11, 2020 at 9:23 am
All caught up? Wow! 🙂 I haven’t yet updated about where we landed but I have good news to share on that front. 🙂March 31, 2020 at 2:17 pm
*hugs* I just wanted to pop in and let you know I’m praying for you especially during this time with the coronavirus. I hope you’re safe and healthy, beautiful! 💕March 31, 2020 at 1:09 pm
Aww… Thank you so much Charis. How kind of you. *hugs*March 31, 2020 at 2:16 pm
So happy you are doing better and regaining your life! I have followed your progress over the years. I also, had Lyme disease and have had extreme sensitivities to mold, chemicals, and food, as I lived in a home that had toxic mold in it. I was so ill and unable to see any hope of getting better for so many years. I wore a respirator everywhere I went and at home and was only able to eat two foods at one point. Then I discovered the Dynamic Neural Retraining System (DNRS). It changed my life! I am almost completely recovered. As a matter of fact, I am living in the very home that mold in it now! I say all of this to encourage you. Not to tell you what to do 🙂 The program is based on the principle that your limbic system gets stuck in a fight or flight response and mistakenly reacts to things you come in contact with that shouldn’t hurt you. It’s called cross wiring in the brain. And the best part is, is you can train your brain out of it and become 100% normal!! I had bought the DVD series and then decided to attend one of the seminars. It was amazing and was the turning point in my path to recovery. I even went to the seminar with a person that had mold illness so bad that she was mentioned in one of Dr. Shoemaker’s books. She is completely recovered now thanks to DNRS and has zero problems with mold! If you are interested check out their website and testimonials. So many success stories of people coming out of chronic Lyme, mold illness, chemical sensitivities and even anaphylactic allergies! God bless 😊March 31, 2020 at 8:32 pm
You’re not healed . Avoidance isn’t healing . It’s taken almost two years of brain retraining and the effects are incredible . Cirs is a neuro immune condition . You tried it a few months and gave up . Rewiring a brain doesn’t take 6 months , it takes a long time . These illnesses are a cross wiring , trauma induced , creating a hyper reactivity of the limbic system . That’s the reality regardless of how much you try to avoid . I think you’re followers should know thisJune 21, 2020 at 12:09 am
Meh I am 5 months in the DNRS journey and saw no results on the opposite I have gotten more and more its and just getting sicker and sicker.
I however plan on retraining for at least 2 years because I have read stories on the DNRS site about people taking that long to heal.
How was your journey if you apparently healed from this? I am currently planning on doing both avoidance and DNRS because my life situation forced me to be with my its 24 7 and I will also stack up wim hof, cardiac coherence, dry fasting and vagus nerves exercises. DNRS alone I feel was not helpful at all so far but there is still a year and a half to go if I want to give 100 % chance to DNRs.June 9, 2021 at 9:23 am
I know this post is from a few months ago, but I’ve been reading through your blog (your brother is on Ydubs with me and recommended checking out your story) and it’s been really encouraging to me! When my family and I talked to someone about the possibility of mold poisoning they didn’t think it made sense for me, but I do have ME/CFS, POTS, and hEDS, so I understand having chronic illness. Thank you so much for being so open, and you will be in my prayers! I hope you’re doing well, especially right now with COVID-19 and everything 💕August 11, 2020 at 10:43 am
Hi Ana! I happened to come across your page when doing a search about faith and suffering. You mentioned the possibility of having genes that inhibit detoxification. Have you heard of or considered the possibility of having the MTHFR mutation? It’s a genetic variant that inhibits detoxification, and there are some specific changes that would need to be made to support healthier methylation and detox pathways. I went through several years of health hell myself, but it manifested in recurring MRSA infections for me. It can manifest differently for different people and mold toxicity is one possibility, along with a susceptibility to Lyme disease. Making changes to support better methylation can actually help to make you less reactive to mold in the long-run. Let me know if you’d like to have more resources on this topic. Maybe this doesn’t describe you but your story really jumped out at me and I wanted to reach out 🙂September 17, 2020 at 7:53 am