Updated: Feb 23, 2019
Have you ever noticed that when you read about chronic lyme, mold, or autoimmunity online - it almost always turns into a success story?
I used to be such a story. And then I wasn’t.
My success story involved using diet and lifestyle to reduce inflammation and to manage my autoimmunity that was essentially "turned on" after a particularly bad mold and chemical exposure where I was living from 2007-2009.
Those autoimmune symptoms had been brewing since I was a teenager with headaches, sinus pain, allergies, exercise-induced asthma, rashes and generalized inflammation. My symptoms were exacerbated by mold exposures in college, a brain injury in 2004, heavy metal exposures in 2005, and a really bad case of mono with strep in 2006, followed by the norovirus a few months later and a chronic fatigue syndrome (CFS) diagnosis shortly after.
Although I had some temporary relief from 2009-2010, diet and lifestyle didn't address a lifetime of previous mold exposures and underlying infections at the root of my chronic immune dysfunction.
I’ve since come to realize why we don’t hear from those of us that are neck deep in the mud and the muck. It’s because we’re overwhelmed with pain and fatigue. We’re trying to keep up with everyday life. I am there friends, and there is no denying it. I have intentions to write about my experiences as they unfold, but I can make no promises. Each day is a struggle to keep up, but when I’m feeling ambitious I will truly try to relay what I’m learning.
Aside from this recent post inspired by my late great (as in amazing) grandma Esh, I hadn’t blogged in four years. Now I sit here overwhelmed by the past few years wondering how to share them with you.
The truth is that I get the same feeling I have when someone I haven’t seen in a while asks, “what's new with you?”
What's new? Where do I even begin?!
I moved across the country to a warmer climate, away from family and friends, for a better chance at healing. All the while unaware of chronic infections wrecking havoc on my immune system, losing multiple homes to mold, losing the ability to bear or raise children, to have a career, and to enjoy the most basic parts of American life like going to the movies, out to eat, or to church.
It’s a perfectly innocent question but that open ended, “what's new,” gets me every time.
Back in 2015 my health was deteriorating, so I searched for answers and eventually drilled down to a chronic lyme diagnosis from a tick bite that had gone untreated in 2010 due to what seemed to be a lupus (diagnosed in ’08) flare. As I tried to treat the lyme and related co-infections unsuccessfully due to a loss of oral tolerance to meds, supplements and food -- we hired an Environmental Indoor Professional (EIP) who identified mold in our desert home behind the wall and beneath the carpet from an old water mark near a window that had been covered by a piece of furniture we bought with the home.
This mold discovery resulted in a Chronic Inflammatory Response Syndrome (CIRS) diagnosis by my Shoemaker certified Naturopathic Medical Doctor (NMD), which results from exposure to Water Damaged Buildings (WDB) with poor air quality or Sick Building Syndrome (SBS). We’ve since learned that I have 4 out of 5 HLA-DP genetic variants that inhibit me from effectively detoxifying bio-toxins such as mycotoxins, lyme and related co-infections as well as a slew of other genetic defects that greatly reduce my ability to remove environmental toxins, adding to my total body burden.
We opted to leave the house with mold, move a couple hours north, and rather than buy or rent a home (for many complicated reasons), we decided to build a tiny home on wheels that was to be mold-free and essentially chemical-free.
We hoped the wheels would give us flexibility. However, to do this in Prescott, AZ (where my husband was taking on new contracts) we were told it had to be an RV so that we could park it somewhere legally. This lead to hiring an experienced chemical-free tiny home builder to construct a tiny home in the interior of an ’83 airstream (aluminum) shell. The idea being that a metal shell would be less toxic, low in mold, and less likely to leak. We believed that if we built a tiny space, we could use higher quality materials for a significantly lower cost than building a home. We hoped that would free up money for my vast out-of-pocket medical expenses. Plus, we had to get rid of most of our belongings from mold exposure so it seemed like a natural transition.
Not quite. This ended up being one of the worst miscalculations of my life. It turns out that one with insane brain inflammation (i.e.: a TGF-B1 greater than 80,000) shouldn't make these kinds of decisions while still residing in mold.
That November, after relinquishing 90% of our belongings to an auction, my parents and I made our way to Prescott with a small moving truck - most of which I still need to dispose of or salvage from storage. During this time we lived in two vacation rentals (both likely had mold and significantly worsened my symptoms), and a hotel for 9 months that was recommended by my NMD. The hotel was the only location where I could tolerate treatments, which we later tested and learned had a low HERTSMI score of 4.
Shortly, after arriving at the first vacation home, I began waking in the night with earth shattering pelvic pain - all I could do was rock, moan, and cry out to God to “help me" for 5-8 hours every single day. I’ve lived with a lot of pain for much of my life, but this was by far the worst and most debilitating. This unknown source of misery would go on to dominate my life for nearly two years.
Meanwhile, the airstream project ended up taking 16 months to arrive, doubling our budget and timeline, and arriving with - you guessed it, mold beneath both sinks. After spending a month (incorrectly) remediating the airstream and hiring contractors to repair plumbing (multiple times), grouting, roofing and things we couldn’t do ourselves, I worked daily (through the pain) to sand, seal wood, and improve the aesthetics using AFM SafeCoat products for people with MCS.
We cautiously (and for lack of a better scenario) moved into the airstream. Soon after, my pain and inflammation reached new heights. While living in the woods amongst the wildlife was therapeutic, something was clearly wrong. Meanwhile, we had ongoing leaks. Our biggest fear in taking on such a project had come true. Instead of avoiding mold, we were right back in mold.
Two months later, my husband was in the bathroom working on the main faucet pipe (which had been becoming more and more loose) while I was having a particularly bad bout up front.
Soon my husband was holding the pipe in two hands, shouting obscenities because he saw a mouse, and I was having palsies - unable to move my hands and arms which were constricting, clawing, and vibrating uncontrollably.
It was that night that we decided we’d move back into the hotel (for another 7 months, 16 total) and to sell the airstream, once we had all problems addressed and at a significantly reduced price. That was January 5th of 2018. We also realized from then on, we’d have to test everywhere that I'd sleep for water-borne molds using the ERMI/HERTSMI dust samples as suggested for CIRS patients.
Denial is a difficult phenomenon my friends, and it comes for us all, especially when dealing with mold.
In hindsight, everywhere we went that had mold aggravated my pelvic pain. We suspected it was interstitial cystitis (IC) and treated it as such. It’s been said that 80% of women with chronic lyme have IC and my symptoms certainly matched. My NMD tried everything to help me manage the pelvic pain including neural injections, ozone infusions, laser therapy, supplements and more. I even learned how to perform self catheterizations to do bladder insufflations at home with a combination of ozone and homeopathic remedies - I still do these weekly. Meanwhile my women's health practitioner, at that time, barely acknowledged my pain. That is until the end of April when a large mass protruded from my pelvis.
My husband happened to be visiting our family in PA. By then, my daily bouts came at all hours of the day or night. With the more traumatic bouts, I’d have full limb palsies, indicating a likely infection component. I’ll never forget the day when I returned home from a mild treatment that lead to a Herxheimer (aka: Herx) reaction from the infection die off. All I could do was lay in bed and shiver and shake for five hours while I had palsies overtaking my hands and arms, then my legs, and lastly my neck and jaw. My husband and family were 2,500 miles away, I was living in a hotel, and I had a large pelvic mass that needed surgically removed soon.
I recall thinking either that was rock bottom or an answer to prayer. After all, something had to give. Maybe my pain and suffering would finally end - at least in that regard.
Once I had imaging of a CT scan and ultrasound, as well as an elevated CA125 (which can be an indicator of ovarian cancer), my women's health practitioner referred me to a gynecology oncologist for surgical removal. From there I consulted with two surgeons in a matter of days, and the very next day I had surgery. Fortunately, the mass was benign and I made it through surgery better than we anticipated!
It turns out I had a large endometrioma growing off my right ovary the size of two grapefruit!! The endometrioma and additional reproductive organs were removed, and the (visible) endometriosis was ablated. For a time, the pain subsided but about three weeks post-op it slowly returned and I was diagnosed with stage IV endometriosis. This was tough news to bear while recovering. I was also told I needed to go on six months of chemotherapy, Lupron, to reduce the lesions. After reading about the neurological and reproductive toxicant, I decided that was not the best approach for me.
Once again my NMD came through with alternative therapies such as mistletoe and laser to reduce cysts and lesions, while working toward hellebores and EDTA. He hooked me up with a Weber laser watch from Germany, that I use every time a bout begins and it reduces my pain - often down to nothing. I've also had some success with pelvic floor physical therapy and 600 mg NAC three times a day. Meanwhile, we work to strengthen and support my immune system.
Shortly after surgery, my husband and I began searching for and testing homes in Prescott - we could not afford to live in the hotel indefinitely.
The first two houses had mold levels that wouldn’t work for me, but the third time was a charm! We found a home with low mold scores (HERTSMI and ERMI) and we moved in August.
Following that move, I had another mold encounter (at a local medical office) resulting in a four month setback and my first known mast cell flare (from Mast Cell Activation Syndrome, or MCAS) resulting in increased food and chemical sensitivities, heat, flushing, rashes, dizziness, pain, nausea, reflux, agitation, rapid heart rate, inflammation and swelling.
Today, I am in my home and tolerating it well, hallelujah! Can I just say that one more time?
I’m living in a home and tolerating it!!!
I’m taking more precautions than ever to avoid mold exposures and environmental triggers, so that I have the opportunity to recover and to strengthen my immune system. My Shoemaker certified NMD doesn’t want me traveling until my inflammatory mold markers improve, and when I do I must wear a mask "at all times." I've been advised to not have anyone to my home in order to keep it “clean" and to avoid cross-contamination from people and clothes. I have to really limit where I go to avoid mold encounters. I can’t tolerate petrochemicals, artificial scents (like perfumes and fragrances), cigarette smoke, pets, dust, outdoor allergens, and most public places. Some days I have to wear a mask just to walk outside depending on the allergens and how much my immune system can handle.
Yet, I’m at a MUCH better place than I was a year ago. I have a home that I tolerate. I have my pain somewhat managed, I have a supportive medical team that partners with me, and I have a special bunch of family and friends whom take an interest in my every-evolving crazy health escapades. I have parents who would do anything for me, and a husband that loves me despite tremendous losses and traumatic experiences. I’m a pretty lucky girl.
Although I don’t necessarily accept that this is my life forever, because I’ll always want to heal and truly LIVE my life, I have found peace in where I’m at today - and with generally doing LESS.
I’m grateful for the pain-free moments, the ability to walk (and hike) with my own two feet, to FaceTime with our nieces and nephews, and the simple joy of tolerating something I hadn’t in the past.
I have gained, as so many of us do with great suffering, a new perspective on life.
Dr. Jay Davidson said it best on The Toxic Mold Summit when he described a mentality of, “This isn’t happening TO me, it’s happening FOR me.”
By reminding ourselves of this perspective and keeping the bigger picture in mind, we can feel less like a victim and more hopeful. I no longer sweat the silly stuff and I certainly don’t try to keep up with my peers. I simply do my best with each day, with each batch of symptoms, and I tackle one challenge at a time. On the good days I find contentment and on the bad days I struggle with my existence, but I always carry on.
Ultimately, I know that my body is but a temporary vessel here on this earth and I strive for eternal life free from pain and suffering. In the meantime, I try to honor God with how I handle these burdens and to help others along a similar path.
Life is not easy, it is full of pain and struggle - but we can live heroically by how we choose to respond to what is laid before us.
Why put all this online for the world to see? I believe there is a real need to share and to normalize these experiences, because there is a true lack of understanding by the medical community and the general public about chronic Lyme disease, Chronic Inflammatory Response Syndrome (CIRS) related to Water Damaged Buildings (WDB) and water borne molds, Multiple Chemical Sensitivity (MCS), Mast Cell Activation Syndrome (MCAS) and more. When you combine all of these challenging chronic conditions, it becomes quite complex! It’s my goal to relay my life experience going from a full ride Division 1 athlete with great ambitions to being unable to work, travel, or to have any sense of a “normal" life - despite drastic efforts.
I’m not sure how often I’ll physically be able to share, but I’d be delighted if you checked in periodically. Feel free to let me know if any topics interest you in the comments below. And in the meantime, be sure to take extra good care of yourself. You’re worth it.