My Mold Journey
Updated: May 5, 2022
I want to preface this by saying that the belief that mold means a home is "dirty" or "cheap" couldn't be further from the truth. I moved to the Northern Virginia/DC Metro Area in 2013. I moved into a huge one bedroom apartment that I had fallen in love with. It was my home, my safe space (or so I thought), my clean, organized sanctuary.
Roughly around one year after I moved in I started developing extreme hair loss. My hair was falling out in clumps all over the place. I would wake up each morning with what appeared to be an entire head of hair on the pillow case. Every time I would shower it would be the exact same thing. My scalp was itchy, had red circles, and I was developing bald spots. My boyfriend at the time also found it very concerning as every time I would stay at his place his bed would be covered in my hair the next morning. I'm not talking about small clumps, I'm talking massive, full head of hair clumps.
This had never happened to me before so I wasn't sure what to do.
I ran to a primary care doctor (they tend to not have much knowledge of mold illness) and they diagnosed me with ringworm (lol, it wasn't ringworm I found out years later). They prescribed me special shampoo and ointment to put on my scalp and that was it. Neither the shampoo nor the ointment worked. My hair actually began falling out even worse. I was devastated as I was so used to always having extremely thick, pretty hair.
Then roughly around 2 years after living there I developed horrible cystic acne. Mind you, I never had acne in my entire life. I always had flawless skin and would always be complimented on how flawless my skin was. It was hard, painful cysts that wouldn't pop and ALL over the sides of my cheeks. NO amount of makeup would cover it because they were raised off of my face. (Side note; acne on sides of cheeks can be linked to the lungs and gut; I was breathing in toxic mold and had developed horrible gut issues from toxic mold so it made perfect sense). I went to multiple dermatologists no one was able to help me. I finally was prescribed Accutane and I signed all the paperwork to start taking it (you literally have to sign an entire booklet to take this stuff) and ended up never taking it, (thank god). I began doing extensive research on Accutane and all of its horrendous side effects and decided not to take it. So I began researching on how to heal cystic acne naturally without any antibiotics or Accutane.
I began reading that most, (not all), cystic acne is linked to a deficiency in Zinc Picolinate; but why did I have a deficiency in Zinc to begin with? Because mold was depleting my body of every healthy mineral I actually needed. Luckily, three years prior to being diagnosed with mold illness, I began changing my entire diet and started taking supplements based off my own research on how to holistically treat acne, hair loss, etc.
My acne had become so severe to where I wouldn’t leave my apartment besides for work/school. I stopped going out and on the rare occasions that I did I would have to cake on a pound of makeup just to take the trash out bc of how bad my acne had become.
Little did I know this was all due to mold. A few months after the acne had started, I was diagnosed with basal cell carcinoma in October of 2014. At the time I was literally addicted to the tanning bed I was orange and thought I still wasn’t tan enough (I look back at pictures now and literally cringe lol).
I think when people hear the term skin cancer they automatically assume it’s just a biopsy. Wrong. Mine was cancer that had spread to 3 different sites on my stomach. I had to have MOHs micrographic surgery to get rid of it which was an 8 hour long surgery and I was awake during the entire surgery. They remove every bit of cancer layer by layer, it takes forever but it was well worth it.
At the time I didn’t have many friends because I was still new to the DC area. My boyfriend at the time who promised he’d be there for me, was not there for me. I lived alone so I had to do everything with stitches in my stomach which resulted in me ripping the stitches from doing too much on my own.
Then in 2016 while I was still living at this same moldy apartment, I developed Epstein Barr virus, mono, shingles, chronic sinus and upper respiratory infections. It felt like the health issues were never going to end. It was a domino effect and my life felt like it kept falling apart no matter how hard I tried to keep it together. Every single month it was a new health issue.
Doctors couldn’t figure out what was wrong with me. I couldn’t figure out what was wrong with me.
Fast forward to October of 2016 my doctor had convinced me to get genetic testing done. At first I was against it and didn’t understand why but it was the best decision I ever made. My results came back that I carried 2 very serious mutations; CHEK2 and BARD1. I had my testing done through Myriad gene testing and the way the results were broken down were in category’s ranging from low risk to extremely high risk. I was at extremely high risk for both breast and colon cancer. I couldn’t believe what I was reading when I read those results.
I remember getting the phone call telling me to come in for my results and I knew it wasn’t good because had they not found anything they wouldn’t have called me to come back in.
I freaked out.
Since my grandpa passed away from colon cancer I was so worried. Breast cancer does not run in my family; however, I was at extremely high risk according to the results. I was then referred to see both a GI doctor and breast specialist for further testing. My colonoscopy results came back fine; however, my breast results did not.
I remember getting the results of my mammogram and ABUS ultrasound and I just balled my eyes out crying. I couldn’t believe what was happening to me. It felt like I was in some type of sick nightmare that I couldn’t escape from.
I remember thinking how could this happen at my age? I was only 26. I had my whole life ahead of me.
I then had both the breast specialist and mammogram tech telling me to consider a full mastectomy and I told them no. They both told me to highly consider it once I hit my 30s (one more year ah) and that most women in my position get mastectomy’s to prevent the cancer from developing and/or returning.
The surgery had to have been the most painful surgery of my life. March of 2017. They removed each cyst with this long tube device that sounded like a gun everytime they clicked it to remove more tissue. The noise still scars me to this day. In order to numb me, they had to insert a needle about a foot long in both breasts, talk about painful and just flat out terrifying.
They ended up inserting titanium metal “clips” as they referred to them once they finished. I have 3 in me now. Had I known about heavy metal toxicity back then I would’ve refused them immediately. I’m extremely allergic to all metals. They never tested me prior to insertion and I’m now trying to have them moved 2 years later because I found out I’m highly allergic.
A few months after this, October of 2017 I then developed vertigo for the first time in my entire life. It was AWFUL. I couldn’t move out of bed, shower, eat, brush my teeth, nothing for 3 whole weeks. I then developed a horrifying upper respiratory infection, ear infection, and sinus infection at the same time.
I then developed symptoms where I had severe brain fog so bad to where I would mix up words, couldn't remember names of simple things like a wash machine, and I could no longer walk. I would get SEVERE ice prick tingling in my hands, legs, and feet so bad to where I physically wasn't able to walk, (neuropathy). Then one day I tried to walk and couldn't at all. It's like my brain was telling me to walk but my legs weren't moving they were completely paralyzed and wouldn't move. I had never been so worried in my entire life.
I remember standing in my living room in the same position for a good two hours because my legs physically would not move.
In addition to all of that, my vertigo had progressively become worse. I had vertigo so bad I was bedridden for about four months. I was first diagnosed with a terrible upper respiratory infection which I was put on 750 mg of Augmentin which made it worse. I then developed what western medicine doctors diagnosed as a "terrible ear infection that came from the upper respiratory infection" and was put on 60 mg of Prednisone in addition to the 750 mg of Augmentin. My vertigo became increasingly worse. Shortly after I was diagnosed with unilateral Meniere's Disease which is a vestibular disorder of the inner ear and affects balance and causes hearing loss and vertigo. I was told I was going deaf in my left ear and would permanently lose hearing in that ear.
Fast forward to two months later, I found a leak in my apartment that had come from the unit above mine. This leak was so big to where it had flooded my entire laundry room and completely saturated both my laundry room and front closet drywall. My apartment refused to even bring me a fan after I had been a loyal resident of 5 years with them. Everything they did following this leak was in breach of the mold addendum in the lease. I was treated horribly.
To summarize, I ended up calling a mold inspector in and having it tested. The results came back as extremely elevated levels of toxic molds (penicillium/aspergillus, cladosporium, and stachybotrys), and my drywall was saturated with 100% moisture, mind you this was 2 weeks after the leak had happened. Anything above 15% is a cause for concern, mine was at 100%.
My apartment continued to refuse to help me. I ended up paying 12,000 out of pocket for a remediation team to fix it. Since I rented and didn't own, they were only allowed to open up a small patch of drywall which in hindsight, was pointless, because unless they're able to fully open up the entire drywall, there's not point in remediating because it will continue to spread.
However, in addition to the mold results coming back as elevated levels of toxic mold, we also found elevated levels in every single room of my apartment and toxic mold growing behind the drywall in every room and in addition to in the HVAC system.
I then began piecing things together with my health and all the toxic mold we had found in every single room. I began doing my research on which doctors to see. I found a functional medicine dr. who was certified in the Shoemaker protocol. For those of you who are not familiar, the Shoemaker protocol was developed by Dr. Ritchie Shoemaker and is the protocol most, (not all), functional medicine doctors use to treat mold illness. Let me preface this also by stating that in order to find a doctor who will believe you that mold is causing your health issues, you HAVE to see a functional medicine dr, homeopath, naturopath, or holistic medicine doctor. Western medicine doctors do not have knowledge in mold illness and do not know how to diagnose it or treat it and they will dismiss it.
The doctor I saw had drawn 16 tubes of blood and the results came back two weeks later. This was when everything began to make perfect sense. I was then diagnosed with CIRS (Chronic Inflammatory Response Syndrome), MCAS (Mast Cell Activation Syndrome), MCS (Multiple Chemical Sensitivity), and Chronic Epstein-Barr Virus.
I was told I had to dispose of all of my belongings and get out of my apartment asap as it was making me too sick to function. I remember sitting there in disbelief and started balling my eyes out crying. I kept asking myself "why is this happening to me what did I do??"
This was two months prior to my move out date. I went back to my apartment and believed I could stay and make it work. I progressively became sicker and sicker. So sick to where I was hospitalized because my lungs ended up collapsing and I was also diagnosed with bronciospasms and pneumonitis. Every single organ had now become affected in addition to all of the other health complications previously listed above.
I surprisingly had a very understanding western medicine doctor in the ER the night I was hospitalized. I remember him looking at me saying "you need to get out of your apartment as soon as possible its no longer safe for you to live there because the mold is affecting you very badly" and I remember balling my eyes out crying thinking what am I going to do I have nowhere to go. I went back to my apartment to try and make it work again and realized I could no longer make it work. My lungs had become so affected to where I had to use a breathing mask to even be able to function in that apartment.
I ended up moving into a hotel and living there for roughly two months until I could find a new apartment. On move out day of the moldy apartment, I ended up trashing everything because by the time move out day had come, every single item in my apartment was covered in black mold and this was AFTER remediation. I had black mold growing on my clothes, shoes, purses, makeup brushes, couch, coffee table, bedding, and even inside picture frames.
I was devastated. I had just lost everything of 27 years. Everything went down the drain.
I walked away with just the clothes on my back and my purse with my ID, social security card, and birth certificate. The girl who once had everything had just lost it all in a matter of hours. This was my rebirth.
And so it began my rebirth....
Thank you for taking the time to read this story as this was very difficult for me to write. I hope I was able to inspire at least one person by writing this. If you're going through a similar situation, don't lose hope. Things DO get better, keep your head up, keep pushing, keep fighting for your life and your health even when people try to tear you down, and most importantly, believe in yourself and stay away from toxic people. Healing is not linear. The most important thing I ever did through this journey was let go of the toxic people who delayed my healing. Once I got rid of them I was able to progress much faster. Find your voice and speak up! :)