It has been a couple of years now since I started getting my life back from a severe toxic mold illness, otherwise known as Chronic Inflammatory Response Syndrome (CIRS). I always wanted to start a blog, but the after-effects of mold illness and other autoimmune conditions left me feeling less capable of writing the way I used to. Why? Because one of the worst symptoms I experienced and the damage left behind has mostly been neurological.

I want to start off by saying today I am doing SO MUCH BETTER! I owe some of that to my team of doctors over the years, but mostly to my own research and persistence, as mold illness is not a common topic of discussion in the western medicine world. And I think the beginning of my journey will help you see what I mean.

Disclaimer

I am not a doctor or expert on toxic mold. I am only sharing MY story and what worked for me in hopes someone else struggling can keep fighting, know what to be asking, and how to help yourself. Through years of research, I have learned no one has the same experience and everyone can have different symptoms. It becomes more confusing when so many of the symptoms overlap with other chronic illnesses. Which in turn leads to a very high percentage of mold illness being overlooked and a misdiagnosis.

When It All Started

December 2017 I was feeling not quite right for several weeks leading up to Christmas. My now husband and I had a trip to Los Angeles planned with friends for the New Year. So we went and the entire time I was there I could not keep any food in and was just exhausted. I got through the trip, flew home on January 2, 2018 and found myself in the ER on January 8th at 2:00AM having my appendix removed.

I mention this because I strongly feel this is when my entire body stopped fighting.

Interesting fact: Did you know while your appendix is said to not be a needed organ, it houses all of your genetics and fights for you when your body is in danger? And once mine was removed within 2 months, all the signs and symptoms began. Read more about the appendix and immunity here.

The First Symptoms

SKIN RASH – By late February I was developing these horrible rashes under my eyes. Not a butterfly rash but these large blotches that almost looked like sunburn. But it was winter and I was not in the sun. Shortly after that rash, we noticed my entire back had a different kind of rash. It was not hives or a heat rash. More like massive hot spots with small raised bumps. It itched so bad I was beyond uncomfortable. So naturally my first stop was the dermatologist.

She looked at both my face and back and sent me home with a cream for my face and without running any tests, said I had Grovers Disease. When I googled Grover’s Disease I was not confident in the diagnosis as none of the ways it says someone can get this uncommon skin condition applied to me.

However, I took the medications as instructed. My face cleared up, but my back took almost 6 months.

FATIGUE – Around the same time the rash started, I was experiencing SEVERE fatigue. I chalked it up to my body still recovering from my appendicitis and the stress of the out-of-state wedding that was fast approaching.

COORDINATION ISSUES – I was starting to walk into walls, just overall feel unsteady. I felt like there were certain things I could no longer control when it came to my body.

MEMORY ISSUES – These did not begin until July of 2018. And it hit me fast and hard. It started with just short-term memory. And by the time September rolled around, I was having the hardest time comprehending things, word association and just speaking and going about daily life in general.

Other Strange Symptoms

  • Swollen Lymph Nodes
  • Severe headaches almost daily
  • Severe gut distention
  • Constant fevers
  • Body Aches
  • Severe sweating throughout the entire night – like soak the bed sweating
  • Inomnia
  • Shortness of breath and tightening of the chest
  • Sores in my nose
  • Sudden weight loss
Mold Illness Symptoms

What My Doctors Said

My first visit to my internal medicine doctor was in April of 2018. All of my blood work came back to normal. She believed the rashes and fatigue were all just stress.

I returned to her in October of 2018 as all of the above symptoms came to the forefront. The fatigue had become so debilitating, that by 1:00 PM every day I could barely hold my head up at work! On the drive home, I would have to call my husband to talk to me most of the 45-minute drive home. I would just cry for hours because my body was so run down.

By this visit, my glands were swollen and I had a fever almost daily, along with a reoccurring rash. After running my bloodwork a second time with normal results, she sent me on to an ENT for my lymph nodes, an allergist for my rashes, and a cardiologist for my shortness of breath.

After a magnitude of tests from all 3 doctors, from lymph node biopsies to 3 different tests from the cardiologist, I was still left with no diagnosis.

Taking Matters Into My Own Hands

By this point, I felt a little hopeless. I had been to every doctor walking away with no answers. It was now January of 2019 and I knew if I did not figure this out soon, I would not get through 2019 as a normal, functioning human. This was when I started diving into my research and discovered the world of Functional Medicine. Some refer to them as Naturopathic Doctors.

By the end of January, I had my first functional medicine appointment with who I will always call my savior, and after an extensive amount of tests, I finally started getting some answers!

She ran extensive blood tests, all of which were outside of what insurance would normally cover with a Western medicine doctor. Along with a microbiome test to understand all of what was going on in my gut.

First Set Of Results

By mid-February, I had my follow-up appointment to go over all my results. As I sat in her office she started mentioning all kinds of concerning things, but the one that stopped me in my tracks was “You tested positive for Lyme Disease!”

This was the first time she ever had a patient test positive for Lyme. So it was suggested I see a Lyme Literate doctor so I could get the best treatment. They would be able to assist me with all we were facing based on my test results. Little did I know, we were not done uncovering all that was lying deep within my body, causing me significant struggles.

Bring On The Toxic Mold Diagnosis

In March of 2019, I had my first appointment with a Lyme Literate doctor in Atlanta, GA. My husband went with me to this appointment which lasted a little over THREE hours. Halfway through she asked me the question that changed everything. “HAVE YOU EVER LIVED IN A WATER DAMAGED HOME OR BUILDING?” My answer – “OH MY GOD YES!”

At the time, I was working as a Human Resource Director, and my office where I had been sitting for years would always leak when it rained. The carpet behind my chair would get so wet if you stepped on it, that water would come up. I never really thought much of it as I just avoided that area. They tried many times to find the leak with no solution. I wish I knew all the damage that leak was slowly causing to my body!

By the end of the visit, she sent me home with some mail-in tests. One specifically for a mycotoxin profile. And as we suspected, my results showed high levels of mold in my body. Specifically Ochratoxin A, Gliotoxin, Sterigmatocystin, and Citrinin.

The next two years of my life were going to be a lot different if I wanted to get better.

Conclusion Of Part One

I wanted to keep this information readable, so decided to share my journey in two parts. In the next part, I will talk through my healing journey and what I still face today and will continue to deal with throughout the remainder of my life.

In the meantime, if there is any way I can help you comment below. I know not having answers or dealing with something no one understands can be a lonely place. While my husband was so supportive and still is today, I know many others could not understand what I was going through.

The biggest thing I learned was you need to keep fighting to get answers. Always listen to your gut. If you know something is wrong, do not stop looking for the answers!

I like to think this entire journey happened to me so I could bring awareness to others. Even if what I share only helps one person get the help they need, my job is done!

Read MY TOXIC MOLD ILLNESS JOURNEY PART 2 HERE!!

Resources