Never in my wildest dreams, or should I say nightmares, did I ever think I would be dealing with something so out of my control. A poison that has taken me over like an alien invasion. See, I am very in tune with body. When I noticed a golf ball sized rash on the left side of my stomach one evening, I knew something was just not right. Earlier that day, I was exposed to toxic black mold. Actually, not one, but two types, Aspergisllus and Chaetomium. This is My Toxic Mold Story. This story will focus on my diagnosis, or should I say misdiagnosis (for weeks), and my treatment protocol. Keep in mind, this is still an ongoing process. It may take several months, to a year, to actually rid my physical body of the mycotoxins that have nestled into my bloodstream.
Also, I am not a physician. My goal is to share my story, my symptoms, my diagnosis, and my treatment in the hope that it will be of use to someone who may be experiencing similar symptoms, and having no luck at a diagnosis. One takeaway from my experience is that you need to be your own healthcare advocate. Toxic mold poisoning is not a common problem that most general practitioners have experience dealing with. To be clear, this is NOT an allergy to either of these molds.
I am not an expert on toxic mold either. Although, I know more about it now than I ever cared to know in my lifetime. Honestly, I did not even know this was a thing, except for an episode of Forensic Files that I had watched several times about a family who was exposed to toxic black mold.
In my research, I have found that not everyone experiences the same symptoms. In addition, not everyone who is exposed to toxic mold will actually get sick. Genetics, and prior medical conditions tend to be factors that elevate one’s risk of illness due to toxic mold exposure. Having said that, my symptoms were quite rare.
MY SYMPTOMS OF TOXIC MOLD EXPOSURE
Nearly every person who becomes ill from exposure to toxic mold will present with varying symptoms. Do not discount an unusual symptom just because it may not be part of a list you found on the internet. Trust your gut! As mentioned earlier, my symptoms started with a rash that spread like a wildfire within a few days. The rash was more of an inflammation-type rash. Meaning, the rash was not bumpy. The rash spread around my lower torso, under my left arm, up my neck and upper back. It was mainly contained on left side with a few splotches on the right side of my body.
Thankfully, or not, I did not, at any time, experience any respiratory issues. Respiratory problems are quite common in individuals with toxic mold poisoning. Honestly, I am not sure what could have been worse.
Apologies in advance for the graphic nature of these photos, but I think it is very important to understand that these photos were taken within eight days of exposure.
SEVERE PAIN AND NUMBNESS
As the rash spread, severe pain accompanied. When I say severe, I mean debilitating. This is coming from someone with a high threshold for pain. My left arm was not only in constant pain, but the inflammation caused numbness in my left wrist, hand and fingers. The lymph nodes under my left arm were enlarged and terribly painful. For the first three weeks, I may have gotten a few hours of sleep each night. Many nights were spent crying from the pain, or in the emergency room trying to get a quick fix like a drug addict. Shots of morphine were my only saving grace. They provided me with at least a few hours of relief so that I could rest.
I wish there was a way to describe the pain. Keep in mind that at this point, I had still gone undiagnosed. Even though in my mind I knew. My husband thought my pain was from a prior neck issue. Knowing the pain was similar, but not the same, kept me on track to find a true diagnosis.
There was no position in bed that was comfortable. I tried pillows, no pillows, wedge pillows. Tried sleeping on the floor. If you can believe it, or not, slept one night in my bathtub. That was probably the best night sleep I had gotten for a while. I would take six to eight baths throughout the night just to find relief. NO JOKE!
Most nights I would give up trying to find comfort, make a pot of coffee, down a few steroids and sit outside until the drugs provided me with relief.
DIAGNOSIS OF TOXIC MOLD POISONING
So, to say the least, diagnosis was a miserable process. Two days after exposure, I made an appointment with my primary care, duly noting my exposure to mold, as she examined my rash. Our precious goldendoodle, Viva, had just been diagnosed a week prior with a brain tumor. Although, my symptoms were atypical of shingles, she felt that was the diagnosis. I was put on three types of medications to combat the “shingles.” Guess what? I was right back in her office three days later with zero relief, and a rash that was getting progressively worse. Definitely not shingles, but rather a medical mystery. Looking back, I do not fault my primary care as she admittedly had never dealt with a mold exposure case, prior to mine. She made a few phone calls and was able to secure appointments with both a dermatologist and allergist.
This appointment was a complete waste of mine time. After making it clear to him (three times) that I believed the rash was related to the toxic mold exposure, he looked at me and said, “I am not going to say this again, this rash is not from mold poisoning.” He did his skin punch, and assured me that the rash was related to a prior sickness that I may not have been aware of. WTF? As mentioned earlier, I know my body very well. Would I not have noticed if I had mono or strep throat?
The results come back a week later. Guess what? NEGATIVE! In all of his wisdom, he told me that I was having an allergy to something. To what? Clueless. Keep in mind this was only about a week after exposure, so I still did not have the confirmed diagnosis of toxic mold poisoning.
Needless to say, I cancelled my appointment the following week to have my stitches taken out. With help from my Husband, we took them out on our own. Do believe that when I finally got to the bottom of what was going on, I did not hesitate to call the office and let him know. Well, maybe I should say, I let him know that he should not discount a patient’s concerns, and to let this situation be a teaching moment.
Unlike the horrible experience with the dermatologist, the allergist truly listened to my concerns about the mold exposure. He performed the allergy panel. Low and behold, no allergy to Aspergillus. What? This just cannot be. Remember, this was early on. Nothing at this point would have had me connect the dots that not having an allergy to something does not mean that it has caused a different reaction. There was no further testing as a patch test would require me to come off of steroids for at least a month. Given the pain and the tiny bit of relief the steroids were providing, I could not resist not taking them.
Additional research on the internet led me to a website whereby I could test my visual contrast sensitivity. Although VCS testing is not specifically a diagnosis of toxic mold poisoning, it can suggest the possibility of the presence of neurotoxins. I would highly recommend taking this test if you believe you have been exposed. It’s free. Needless to say, I failed the test. So, I asked my Husband to take the test. He passed with flying colors. Believe me, he never does better than me on a test. Kind of making a joke, but for reals! The results of this test further supported my belief that I was suffering from toxic mold poisoning.
So, one of the many nights I spent in the emergency with horrific pain, the physician on call ordered an X-ray and CT scan of my upper back and neck. The CT scan showed that a screw in my neck was broken. See, I had two surgeries on my neck fusing my C4 through C7. This got me wondering, and maybe even questioning my own diagnosis. What if all of this pain is related to my neck? Now I am thinking, having an allergy to nickel may explain the rash and the broken screw may be hitting on a nerve. That’s got to be it, right? Not in my mind, but my Husband was sure of it.
The following week I was able to secure an appointment with the neurosurgeon. After reading the results of my CT scan, he assured me that the broken screw was not causing any of my problems. In fact, he told me it had looked like I had broken it over a year ago. However, to be on the safe side, let’s do an MRI. Any guesses on the results? You would be correct. NEGATIVE! Finally, my Husband came to my dark side. He actually believed me that this was now mold related.
After seeing all of these specialists, racking up a ton of medical bills, and realizing I was no closer to a diagnosis, I started doing a ton more research. Reading everything I could get my hands on about toxic mold exposure. Thankfully, part of that research led me to Mymycolab. The test costs just under $400. After ordering and receiving the test kit, with the help of my PC, we sent my blood serum off to be tested. I even called to ask if they could rush the results. The normal two week waiting period was just too long given the pain I was experiencing. Guess what? Out of fourteen different mycotoxins, I marked on all of them, at varying degrees. OMG! No way? I was right all along?
This is one of the main reasons I wanted to share my story. Had I trusted my gut, I may have been able to come to this diagnosis a lot sooner. Maybe I needed to go through all of this to help others.
Now that I know I have these nasty mycotoxins floating around in my body, how do I get rid of them? My PC, admittedly had no experience. She could only refer me to an infectious disease expert. Let’s wait on that. Let me do more research. I had to rid myself of all and everything that could possibly be harboring the mycotoxins (see they can cling to items like clothing) and start a type of detox protocol.
As far as detoxing, there were basically on two methods; traditional medicine, or an integrative approach. Traditional medicine would force me to take medications called binders. Yep, exactly what you are thinking is the reason I decided not to go this route. There seemed to be too many horror stories out there about how binders can negatively affect your entire body. Integrative medicine was a second choice, and clearly the route I would be taking.
Needless to say, it takes a village. Luckily, for me, I think I found exactly who, and what I needed to put me on a path to recovery. In addition, it’s super healthy to maintain a positive mental attitude. Admittedly, there were many times throughout this experience where I could not understand why this is happening to me. I believe more than ever that you are never given more than you can handle. Having said that, I want this post to be a learning experience. By no means is this meant to be a “pity party” for me, save that for my Husband. He deserves every bit of praise.
AVOID FACEBOOK GROUPS
First and foremost, let me make this clear, early on I joined a number of Facebook groups filled with people who have toxic mold poisoning. If you are anything like me, and what to stay positive during this process, do NOT join these groups. I get that most need an outlet to discuss their health concerns and issues regarding toxic mold poisoning, but these forums were not a good fit for me, or for my healing.
How in the world was I going to do this? I knew I needed an expert, or a team of experts to guide me through this process. I had absolutely no clue how to detox, or even the length of time it would take.
MARY MILLER BROOKS WITH SUSTAINABLE NUTRITION
Mary Miller Brooks, founder of Sustainable Nutrition, was the first person that came to my mind. We had been friends for a number of years, and I just knew she could lead me down the right path. I recall her talking about how important gut health is to one’s overall health. Needless to say, I was elated after speaking to her how much she knew about mold toxicity and detox. She gave me a list of supplements and steps I needed to take immediately in order to start the detox process. Given the results of my mycotoxin test, Mary also consulted with Dr. Meletis, a world-renowned physician, author and educator about my treatment protocol. The hope is that I can rid myself of the mycotoxins in about six months.
Given all of this, I had work to do. I am not going to lie, the first few days were a struggle. Giving up Diet Coke would be very difficult for me, but I did! I vividly remember one of the first days, puking my guts out all day long. Mary is well educated on the types of foods that I needed to avoid during the detox process. Honestly, I never knew that mold was contained in so many foods. Here is a basic list of those I had to avoid:
- white flours
- commercial oils
- fermented foods, like soy
- moldy cheeses
- limit coffee use
To control the inflammation, we also needed to add a low-histamine diet. In addition, Mary also recommended the following as part of my detox protocol:
- lemon and ginger
- miso soup
- infrared sauna
- epsom salt baths
- dry brushing
- eat organic
- loads of sunshine
- reduce stress
- change my mask daily (given Covid-19)
- change the air filter in my car
I want to thank Mary for everything she has done to help and guide me on my path to recovery. If you are having any health issues, I encourage you to seek her guidance. She knows her stuff!!!
A simple google search for infrared saunas in my area led me to The Invigory. Honestly, I cannot say enough good things about this place, and the people. They have a true concern for your well-being and surprisingly, quite knowledgeable when it comes to how the infrared sauna can help clients not only suffering from mold toxicity, but other ailments. Salt room therapy is also an essential part of my detox protocol offered on site.
Typically, I try to utilize the infrared sauna three to four times per week. On a recent visit, I was made aware that they will soon be offering medical IV hydration. As part of their introduction, they were offering free trials. After having a lengthy discussion regarding my current issues, Dr. Jennifer Statis recommended the detox hydration bag (full of glutathione, which is an essential part of my recovery protocol) with added zinc. Honestly, I was so impressed that she took so much time with me, and even went home that evening to do a bit a research, just for me! Currently, I am receiving these treatments weekly. They have helped me tremendously. A lot of my pain has subsided and my energy levels have increased exponentially.
Look for a mid-October launch of these medical hydration IVs at The Invigory. Hydration IVs will be offered for Detox, Performance, Immunity and Anti-Aging Hydration. You can thank me later!
FINAL THOUGHTS AND THANKS
Believe me, this is an ongoing process to rid myself of these mycotoxins. There are good days and bad days. The rash has faded somewhat, but keeps reappearing at times, with a vengeance. As mentioned earlier, my treatment protocol is not static. We are all trying to find the perfect balance, the perfect combination of supplements and treatments. On purpose, I have tried to avoid any discussion about the medications I was prescribed early on prior to my diagnosis, as well as, my current supplements. What works, or does not work for me, may be different for you. I encourage anyone who is affected by toxic mold to take the route that you are most comfortable with. This is My Toxic Mold Story. My belief is that I was given this burden to help others, and to also support those people who have helped me tremendously along the way.
I will continue to update this post throughout the next few months. Please feel free to message me with any questions you may have regarding my symptoms, diagnosis and treatment.
I would be remiss if I did not take time to thank my incredible Husband, Steve Latin (I always refer to him as The Seve). That part of our wedding vows, “in sickness and in health,” he took to heart and soul. Not only was he dealing with my health issues, he was caring full-time for our sick Viva.
This man of mine slept (when he could sleep, which was not often) on the floor with our Viva for two months! He tended to her every need when I could not. Thankfully, I was able to make her homemade bone broth. He made me coffee and sat with me in the middle of the night, he took me to the emergency room, he stood by our side like a Saint. If you know him, you know how incredibly lucky I am! Thank you my Husband. You are one-in-a-million! I LOVE YOU!