I’ve gotten far enough along in my treatment for mold illness and have learned enough in the process to start sharing my story and what I know in an effort to help others get the direction they need. This topic needs to be acknowledged and discussed so much more than it currently is because many people’s homes are making them extremely ill and they have no idea.
This post is written from my personal story and viewpoint as a patient, not solely as a health practitioner. I will spend much of this post referencing the research and work of Dr. Ritchie Shoemaker, MD who is the pioneer in biotoxin illness diagnosis and treatment.
My Personal Mold Diary
The house I was renting in beautiful Boulder, Colorado flooded as part of the 100-year flood that devastated much of the town. The water rose up from the basement floor when the sump pump quit working. The basement happened to be my living quarters, but luckily I was able to get all of my belongings moved out of the basement before they were damaged from the rising water.
Due to the massive amount of damage for many homes that day and the days that followed, the water remained in the basement for several days before a disaster relief company was able to bring in fans, remove carpet, etc. I didn’t know at the time that mold can grow in as little as 24 hours, so a harmful living environment was already being created.
In the months that followed, the landlords repaired the basement by replacing carpet, drywall, vanity, and tile. They did the work needed to be deemed a safe residence on a surface level. I moved back in, happy to have my space back.
Life was going great! I was in the best shape of my life having just trained and competed in my first powerlifting meet and Tough Mudder race. My business was thriving and my social life was keeping me busy.
Then I ate the bad piece of chicken that forever changed my life. I was testing out a new chicken curry recipe for the blog that turned out awesome…except the chicken tasted funny. I ate a few more bites and then begrudgingly threw it away, sad to be wasting all that otherwise delicious food.
The next morning I got up, got dressed, and headed to the gym. As soon as I got there, I realized something was very wrong. I had intense stomach pains and extreme nausea. Back home I went, where I ended up being violently ill. For the next 2 weeks, I was so sick I could barely get out of bed, work, eat, or drink. I lost 13 pounds which was A LOT for my already small frame. Because of my previous issues with ulcerative colitis, I assumed I was going through the worst flare-up of my life, but wanted confirmation. I sought out a new natural medicine doctor in my area.
Finally, my GI panel results came back with a diagnosis…a SALMONELLA infection. Well, that explained a ton! I was immediately put on a course of antibiotics followed by several rounds of herbal antibiotics to make sure it was gone. What a relief…life and health will get back to normal.
Little did I know this was just the beginning.
I was having random symptoms that made absolutely no sense to me. I was extremely fatigued, gaining weight beyond what was my normal weight, losing hair, having moments of dizziness, feeling forgetful and foggy, having a hard time completing easy workouts, getting congested and coughing overnight, having excessive pain in my otherwise healthy joints, and just overall not feeling like my normal, energetic self. I knew something was up that wasn’t just the repercussions of antibiotics. I went back to the naturopath for more testing.
The results came back at my next doctor’s appointment and she was concerned with 2 things. First, my thyroid hormone levels were off and my antibodies were indicating an autoimmune diagnosis. I had developed my second autoimmune disease, Hashimoto’s Thyroiditis. I was devastated and confused. I received a prescription for thyroid medication that I unwillingly accepted.
And two, my extremely high levels of both lead and antimony indicated on my heavy metals test. In her exact words, “many times these levels are indicative of mold exposure.” And right then, it all clicked. I told her about my living situation and how it was part of the flooding 1.5 years ago. Her response was to move as soon as possible.
What I didn’t realize at the time, but now know, is that those two diagnoses were interconnected, and the salmonella infection was the stressful trigger that got this snowball started.
And so I did. I moved out and got rid of quite a bit of furniture as I didn’t want to take the chance of bringing the mycotoxins with me. I was happy to have found a reason for my symptoms and a way to get better. I was on my way to normal, again!
Or so I thought, again.
After a weekend of the worst abdominal pain I have ever felt in my entire life, I went to the ER. An ultrasound revealed appendicitis and massive colon inflammation associated with it. I had emergency surgery to remove the appendix as well as the damaged portion of the colon, about 12 inches. I spent 6 days in the hospital recovering and then about 2 months at home waiting for incisions to heal and strength to come back. Now, seriously, can this just be it?!
Again, what I still didn’t get at the time, but was starting to get a bit suspicious about, was that THIS medical emergency was also connected to the moldy house.
I spent the fall and winter recovering and working on getting well. But I was still plagued with just not feeling well. I continued to gain weight – about a pound a week – no matter what I ate/didn’t eat or the workouts I did/didn’t do. I tried everything, but still ended up gaining about 35-40 pounds of unexplained weight in a matter of months. I was still very fatigued, weak, losing hair, having serious problems with my joints, and just all around felt crappy. Events that used to sound fun, now just sounded exhausting. I couldn’t keep up with conversations that involved more than one person. I blamed it on adrenal fatigue and still working to stabilize my thyroid hormones, as they were all over the place.
My friends had a room open up for rent in their home in Boulder. I had now been living 30 minutes outside of town for 8 months and was desperate to get back to my favorite place, so I jumped at the chance to live there. I moved in, getting rid of more of my belongings that wouldn’t be needed in the already furnished home, and was happy to be back in the town where I belong.
A few weeks after moving in, I decided I wanted to further investigate my continuing symptoms. I just wasn’t OK with living at 50% capacity…I wanted my normal life back! I made an appointment with both my naturopath and allopathic medical doctor. I wanted to revisit the mold situation to see if there was something more I needed to do besides getting out of the environment. I had been doing a lot of research on mold illness at this point, finding the work of Dr. Shoemaker, and was becoming more concerned that this part of my journey wasn’t yet over. But, I also wanted to get basic blood work and the opinion of my medical doctor to see what else may need to be addressed.
The results came back from both. My MD told me I was totally fine, everything looked great, and that I just needed to eat less and exercise more. That DOES NOT sit well with a nutritionist and personal trainer! My naturopath had much more interesting information to report.
We had done some lab work to help see the effects mold exposure may have had on my body. I now know these are the standard lab tests that need to be run in order to be diagnosed with Chronic Inflammatory Response Syndrome (CIRS). My results showed that this was definitely an issue for me. I had the genetic predisposition which makes it impossible for my body to detox from biotoxins. In people like me, when there is exposure to biotoxins, the body creates an extreme immune and inflammatory response against the toxins instead of processing them and getting rid of them, as is the case with people who don’t have the gene. This response continues until receiving proper diagnosis and treatment, both of which are VERY specific. So, even if you are out of the moldy environment, your symptoms don’t improve.
I also had several specific inflammatory markers that were extremely elevated. When these markers are elevated, it shows that the body has formed an inflammatory response in the presence of these toxins. This high level of inflammation causes a whole slew of very intense, seemingly unrelated symptoms, many of which are neurological. So, things like brain fog, memory loss, inability to concentrate, word recollection, and mood issues are almost always present in people with CIRS.
Other systems of the body are affected too, such as the endocrine system, which we were able to determine were also an issue for me based on these lab test results. Basically, all communication lines between the endocrine organs – pituitary, hypothalamus, thyroid, adrenals, gonads – are jumbled, so thyroid, sex, metabolic, and stress hormones all get bumped way out of balance. This shows up as weight gain, weight loss, thyroid imbalance, amenorrhea, painful PMS, fatigue, joint pain, low energy, poor sleep, insomnia, and the list goes on.
And, just like that, I really had finally found my answer. And everything I had been through for the past year made sense. Now that I had a diagnosis, I could begin treatment and get back to normal life. Because of my past research, I knew I wanted to follow the Shoemaker protocol.
Upon leaving the doctor’s office that day, I was given a prescription for cholestyramine (CSM), which is used “off label” to bind toxins. As a very basic description, CSM works by acting as a magnet that will pull toxins out from the fat cells -where the body stores them – and into the GI tract, where they can be safely eliminated via stool. CSM is a prescription medication originally intended to have the same magnet affect on cholesterol, effectively lowering cholesterol. (Side note: As a holistic nutritionist who realizes the importance of cholesterol to so many facets of our health and eats a high-fat diet for this purpose, I still find it ironic that I am relying on a cholesterol-lowering medication to get me healthy again. 🙂 )
The nurse did a nasal swab to test for MARCoNS (multiple antibiotic-resistant coagulase-negative staphylococci), which is an antibiotic-resistant staph infection that commonly grows in the nasal passages of those with mold illness and can make symptoms much worse and treatment impossible until it is treated itself. Those results ended up coming back negative (for now), yay!
I was also instructed to test my current home for mold. There is one home testing kit that is the ONLY way to test for mold in a home and get accurate measurements. This is the ERMI test by Mycometrics. Unlike other mold test kits, this test measures the mold level by testing dust particles from the home instead of air samples, providing much more accurate and reliable results. According to Shoemaker, for a house to be considered safe, it needs to have an ERMI score of <2. To make things simpler, Shoemaker took the 5 most dangerous mold species on the ERMI and gave them their own scoring system called the HERTSMI-2. This test is slightly cheaper and will still give a good indicator of building safety for those stricken with mold illness. A home is considered safe if scores <11. It is borderline an issue between 11-15, and definitely bad >15.
The ERMI test of my new home I was sharing with my friends came back at a -.5. According to Shoemaker’s range, my home was considered safe! I plugged my results into the HERTSMI scoring system and it came back at a 12. Hmm, borderline. At this point, I was so over moving and worrying about mold, that I just told myself it was fine and believed it. On my way to recovery…
Within a few weeks of starting CSM, I was feeling quite a bit better. I had very few side effects from the medication after the first week of taking it. There were fewer days of total fatigue (although not totally gone) my brain fog was beginning to dissipate, I was able to hold conversations better and with more focus, and the joint pain in my knees, wrists, and ankles was less noticeable. Overall, I attribute CSM to helping me go from 50% to about 70%.
After about a month of this medication and another visit with my current naturopath, I got this nagging gut feeling to seek out another opinion. Not because I didn’t think I had mold illness, but because I wanted to make sure I was getting the best treatment with the most informed doctor possible. I wasn’t willing to spend another minute doing anything that wasn’t directly involved in me finally recovering and moving on.
With a little bit of research and some community outreach, I was able to find another doctor in my area that specialized in mold illness and the Shoemaker protocol. I called and made an appointment and immediately felt relief just in that first step.
The month started with a work vacation – a trip on a Caribbean cruise as a speaker for the Low Carb Cruise conference with my podcast co-host, Meg Doll! It was a great trip and we made a lot of new friends and business connections. But, health-wise, it was a struggle for me. The combination of the high humidity and probably mold on the cruise ship made my symptoms flare-up. I was very tired and achy the whole time and barely had enough energy to walk from one end of the boat to the other.
Finally, my appointment with my new doctor arrives! We have a great talk, I find out he and his whole family have been through this before, and he has helped many people with mold illness recover. There is hope!
He looked at my ERMI results and was a bit skeptical of the ‘borderline’ HERTSMI. He gave me the number of a mold inspector and told me to have him come check it out. He also re-swabbed my nose to test again for the MARCoNS because he said many healthcare professionals don’t get far enough up the nasal passage to get an accurate reading.
He bumps up my CSM dose to full strength, 4 packets per day and gets me started on high dose fish oil, 4.2 grams of EPA and DHA.
The month of bad news. The mold inspection of my current place came back with a really high amount of the WORST mold you can have – stachybotrys. I decide to move out immediately. I moved to my parents’ house while I look for a new place to live that I can have tested for mold prior to lease signing. I also have to get rid of almost everything I own because the mycotoxins from this mold, in particular, are very good at staying on porous materials and continuing to make you sick, even after cleaning. I wasn’t about to take the chance of contaminating my new, safe, clean home.
It was hard to say goodbye to some of my belongings, but most things I didn’t have a problem with trashing if it meant my health would be restored. It was more so the financial loss that was stressful, but I knew it was all for my health.
I began my home search and found a great studio apartment in a building that had been recently built. I was so excited about my new place! They were even kind enough to let me have an inspector come through to check for mold before I signed the lease.
Around this time, I also got results back from the doctor’s office showing that I actually DO have MARCoNS – the previous test hadn’t been done correctly – and would need to begin treatment as soon as I moved into a safe place. I was so sad I didn’t get to bypass this step of the protocol but so glad I found a doctor who is so meticulous with the steps and had now caught two pieces of the puzzle that would have kept me sick!
Moving month! I was scheduled to get into my new apartment and do an inspection a few days before moving in. As soon as the inspector and I walked into the place, I got a bad feeling. It was yet another gut reaction. Within minutes and with the use of his trusty moisture reader, he was able to find two areas of water entry that were a concern for mold growth. And, for the first time, I actually felt bad in a building. I could actually feel the effects of being in an unsafe building on my body. For me it showed up as dizzy, headache, and nauseous. And just like that, I was homeless again.
I was determined to find a nice, clean, safe place to live that day no matter what it took. I needed to find a place I could get well in so I could begin the next phase of the protocol and I wasn’t willing to wait another day.
After a long day of apartment hunting, I had found a home that I just knew would be perfect. It was a brand new LEED-certified building and I would be the first person to live in the unit. I spent time there and felt great! I did an inspection with my own moisture meter and everything came up all clear. I signed the lease and moved in that weekend!
At this point, I had gotten rid of 90% of what I owned, including all of my furniture, clothes, and other household supplies, most of which was actually for the second time. I spent the next few days looking for the minimum amount of safe, inexpensive, cute furnishings for my new place and a few outfits I could wear for a bit while finishing up the protocol.
During this move, I also started BEG spray to treat the MARCoNS which is the 3rd step of the Shoemaker protocol, after getting into a safe environment and binding mold toxins with CSM. I was slowly making progress on the protocol!
The first few days on the BEG spray I felt very flu-like, but I continued on full dose hoping that was just a sign that it was working. Within a week, I began to feel really good, almost like my old self. The fatigue that had been plaguing me since the beginning was lifting and I was thinking clearer than I had in a long time. By the end of the 4 weeks on BEG spray, I was at about 80% most days.
I settled into my new home and am absolutely loving it! I feel so good here! That being said, my new place quickly became one of the few places I feel good upon entering. As I make my way through the protocol, I notice that I am very sensitive to buildings that may have a mold issue. Within minutes, I begin to feel dizzy, nauseous and get a headache. I will be very tired the next day after exposure. In the mold world, this is called ‘unmasking’ and is actually a sign of recovery. However, it does cause some worry as it can feel like you are taking a step back in healing.
I got re-tested for MARCoNS and it came back negative which means my 4 weeks on BEG spray worked! I also got an update on all of the lab work I had done when this began that had originally diagnosed me with CIRS. All of the markers are headed in the right direction and many of them have actually gotten back into optimal range!
Because of all of this good news, it meant I was now ready for the final step of the protocol — VIP spray. Vasoactive Intestinal Peptide (VIP) is a neuropeptide that resolves many outstanding issues in CIRS patients…the icing on the cake, so to speak. It does this by regulating much of the inflammation that has been impossible for our bodies to shut off until this medical intervention. Many recovered patients call VIP the ‘miracle drug’ and the one that ‘gives them life’. Now, THIS is exciting! I’ve been waiting for this step for a long time, many times thinking it would never happen. While not everyone does well with it, I’m very hopeful this will be my icing.
I did get a bit of bad news. I have one concerning marker which is that of leptin. Leptin is a hormone that regulates body fat storage, metabolism, and hunger vs. satiety. Some people go into a state of leptin resistance when diagnosed with CIRS because of the inflammation damages or shuts down the leptin receptor sites, so the message of your metabolism can’t be heard by your body. I have been having issues with leptin from the very beginning, which explains the weight gain as my number one symptom. Unfortunately, it has not yet shown any signs of improvement. My doctor and I are hopeful that getting onto the last step of VIP will correct this as well. I am also doing a 2 week intermittent fast to help with this.
Mid-September to present
I have been on VIP for almost a month. I can safely say now, after that timeframe, that I have gotten 95% of my health back! It’s almost unbelievable how quickly and effectively VIP worked for me. My energy is through the roof all day. I’ve been able to resume high-intensity workouts. I sleep deeply and wake up energized. I think clearly and have become more efficient with my work.
At this same time, I also changed something else that could be contributing to these amazing results…my diet. I completed my 2-week doctor prescribed intermittent fasting schedule and liked it so much that I have decided to continue this schedule indefinitely. I wrote a blog post about this experience. Not only that but in order to make my intermittent fast more comfortable, I adopted a ketogenic diet. These changes, in addition to the VIP treatment, have finally sparked some fat loss. Up until now, I have been unable to do anything but gain weight through this illness due to the leptin resistance I developed. I can now say that the combo of these three interventions may be reversing this leptin resistance and allowing my body to get back to its happy place. The ketogenic diet with intermittent fasting has also been found to improve cognitive function, energy levels, and detoxification capacity, so these benefits are only enhancing the effects of VIP for me.
I am so relieved that this chapter of my life is coming to a close and, after 2 years, I am beginning to resemble the person that I once was.
What is CIRS?
Chronic Inflammatory Response Syndrome, also known as biotoxin illness:
- an acute and chronic, systemic inflammatory response syndrome acquired following exposure to the interior environment of a water-damaged building with resident toxigenic organisms, including, but not limited to fungi, bacteria, actinomycetes and mycobacteria as well as inflammagens such as endotoxins, beta glucans, hemolysins, proteinases, mannans and possibly spirocyclic drimanes; as well as volatile organic compounds.” — Dr. Ritchie Shoemaker MD
- NOT a mold allergy. It is high-level inflammation within the body caused by an overactive immune response.
- Causes a loss in the quality of life of the patient, even when they ‘don’t look sick’.
- Gene susceptibility is the reason why some people get sick and others don’t – 25% of the population has the gene.
- Getting out of the water-damaged building will not decrease illness as it is a blood and tissue inflammatory illness.
- Think about your current and past dwellings and if there is a possibility they were a water-damaged building. Did your health decline after moving into any of these places?
- Test yourself at home using the Visual Contrast Sensitivity test which measures one of the neurological functions lost in CIRS patients, contrast.
- Find a doctor who will test you for these lab tests. The best way would be to call and ask if they treat mold patients using the Shoemaker protocol. Bring the appropriate lab orders to your physician to ensure they are doing them right as there is a lot of room for error and variety within these tests that will produce inaccurate results.
People with CIRS will have some/most of these symptoms, but not necessarily all and every patient’s response will be different.
- Memory problems, brain fog, trouble with focus and executive function
- Fatigue, weakness, post-exercise malaise and fatigue
- Muscle cramping, aches and pains, joint pain without inflammatory arthritis, persistent nerve pain, â€œice pickâ€ pain
- Numbness and tingling
- Light sensitivity, red eyes, and/or blurred vision
- Sinus problems, cough, shortness of breath, air hunger, asthma-like symptoms
- Persistent nerve pain
- Abdominal pain, nausea, diarrhea, appetite changes
- Metallic taste
- Weight gain despite sufficient effort (weight loss resistance)
- Night sweats or other problems with temperature regulation
- Excessive thirst
- Increased urination
- Static â€œshocksâ€
Other Amazing Resources:
- Chris Kresser – 5 Things You Should Know About Toxic Mold Illness
- Chris Kresser’s podcast interview with Dr. Ritchie Shoemaker about CIRS
- Dr. Jill Carnahan – Is Toxic Mold Exposure The Cause Of Your Symptoms?
- Experiencelife.com – Could It Be Mold?