I wanted to do this post about mold illness after we had conquered it, but it turns out it’s taking more time than I previously thought. So many people have been asking about it, and it’s complicated to explain, so I’m putting this information out there before we’ve reached the conclusion of it all.
I’ve seen doctors my whole life to try and figure out why I faint easily. I’ve always had very low blood pressure, and they attributed that to being a runner, but I had it before I started running. For many years I had anxiety about going out because I was scared I would pass out. Twice I passed out at restaurants after having only a sip of alcohol. Once I had to call 911 because I couldn’t walk. Once I went to the ER after eating a lot of grapefruit (one of the highest histamine foods). A few years ago I woke up with pneumonia for no apparent reason. I did yoga everyday. I wasn’t sick and yet there it was, pneumonia. It was like the watching the end of The Usual Suspects when I figured out that all of this was mold.
My oldest son Noah had a rough year. He had stomach aches all year. He had pneumonia. His whole life he’s had a lot of strep throat. Twice we’ve had to put him on a regimen to get rid of his gut disbiosis and candida. This, despite that fact that we are talking about a kid who doesn’t eat gluten, or dairy. A kid whose favorite meal is a kale salad with apple cider vinegar, and olive oil, broccoli sprouts, and sprouted nuts and seeds.
In Spring of 2016, I asked my friend and trusted health guru, Andrea McNinch what she thought was going on with Noah. She thought it sounded a little moldy and asked us to go online to Life Extension and order HLA Mold Geneteic Testing, and Biotoxin tests. I had felt healthy for years, but she wanted the kids and I to all get tested. I didn’t want to do blood tests on the little ones Ben (age 3), or Harlow (age 1), so I just did Noah (9) and Henry (7).
During the last 10 years, I’ve had no anxiety, and I have felt great. However, after giving birth to Henry, my second, I got scalp psoriasis. That went away went I stopped eating gluten, and only came back when I was nursing Ben and Harlow. I’ll explain why this is relevant later.
The great thing about using Life Extension is that you don’t need a doctor. You can just get whatever blood tests you think you need, and go to a lab. I will say that their allergy testing doesn’t seem to be that accurate. Andrea also requested that we all do the Cyrex testing done at the same time. Cyrex is a great test for food issues, as it shows what you are actually reacting to. I don’t have any true allergies, but my Cyrex test showed I was reacting to pineapple, ginger, turmeric and vanilla. All foods I eat a lot of. Cyrex testing is very expensive though, and you need to go to a doctor to get it, but it’s a great tool if you are able to get the test done. It also tests for heavy metals.
We got the tests done in June 2016. We got the results July 2016. We rented an RV for the month of July that turned out to be a box of toxins, and here’s how I know. I don’t want to get too scientific here, but I can on a later post if I hear that people want more information. I’ll try to keep it as simple as possible. Transforming Growth Factor beta 1 (TGF-β1) is used as a marker for mold illness. It lets us know how hard our immune system is working. 2,500 is considered to be high. Mine was 2,700 in June. It was 10,000 in August after we turned in the RV.
We rented it so we could take the baby and our three year old to watch the older kid’s swim meets. The meets are a good 4-6 hours, and it’s hot out. I was nursing and could not leave the baby home, so an RV in the parking lot of the meets seemed like a good idea. The problem was that it was covered in mold unbeknownst to us. We only spent a few afternoons in it throughout the month, but the morning after that last day was the beginning of a long journey.
I woke up and had my usual matcha tea. I went to our lower level to play on the carpeted floor with the kids. After only a few minutes I started feeling like I would pass out. I got hot, and had major anxiety. Feelings I hadn’t had in years. Then Noah told me he felt nauseous. We went upstairs to the carpeted play room, and we felt sick in there as well. We decided to go outside and go swimming in our pool (non chlorinated). We felt better and I went in to get a smoothie with mixed berried and pea protein powder. My throat began to close up, and I literally thought I needed to call 911. I sent Andrea a text and she told me to try a low histamine diet. When I googled low histamine diets there were so many symptoms I had during high stress times in my life. I could not believe I had an issue with histamines all of my life and never knew it. But then, I tried to eat a kale salad with apple cider vinegar, and avocado and I had to run to the bathroom. My stomach was killing me. Andrea told me I shouldn’t eat sulfur either. She said even though my TGF-B1 wasn’t that high, I must be having issues because of my hormones. At that time we hadn’t gotten my second TGF-B1 test done, so we thought we were still dealing with 2,700, not 10,000.
That week was one of the worst weeks of my life. The week that Noah got sick was actually the worst. I cried all week. Not in front of the kids, but I literally could not even talk to a stranger at the gas station without crying. My brain was hijacked by mold. I could only eat meat for breakfast lunch and dinner and root vegetables because everything else has either histamines or sulfur. I tried cashew butter, my throat closed up. Coconut butter, my throat closed up. Hemp seeds, well you get the point. I prayed over each meal to thank the poor animals who sacrificed their lives for mine. It made me incredibly sad, but I had to eat. I have 4 kids to take care of after all. My vision was blurry. Everything looked like I was looking through the smoke of a fire. Every muscle was sore. I felt like i was going to die, but in the most literal sense. I honestly didn’t think I would live to see my baby grow older. I prayed every 5 minutes at least. I felt poisoned.
That week Andrea sent us to Restorative Medicine in Rochester Michigan. They deal a lot with CIRS, Chronic Respitory Respiratory Syndrome. “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”.
They tested me, Noah and Henry. Turns out we all have CIRS. Noah’s TGF-B1 was an astonishing 33,000. And that was form his June test! It went up another 3,000 form the RV. Henry was 14,000 and his also went up an additional 3,000 after the RV. We remodeled our home the summer of 2015 and we all had heavy metals show up on our Cyrex tests that were consistent with paint exposure.
At the same time we just got our HLA tests back from June and we are all multi-susceptible to mold. Meaning, our bodies don’t recognize mold as a toxin. So, our bodies hold the toxins, causing chronic inflammation and illness. Without binders, like clay and charcoal, we just keep getting sicker. 25% of the population has these genes, and I actually think it’s more than that.
My poor babies were sick all year, and now we know why. Henry has had croup a few times a year since he was a baby. I took him to Terry Robinson in Birmingham Michigan all last year for NEAT allergy work. She treated Henry for mold before any of this started because she muscle tested him for it. She had me put out a bowl of water in his room and let it sit out for a week. Then I would bring Henry and the water to her, and she would muscle test him. It showed he was allergic to the air in his room and that the air was moldy. We had the room tested to mold using ERMI testing. The industry standard for mold. Nothing showed up. We decided to remove the carpet anyway. The second the carpet was removed, he stopped having the sniffles every day, and stopped getting sick. That’s probably why his numbers were better than Noah’s.
Fortunately for me, I drink green drinks every day, take infrared saunas every night; I dry brush, use a rebounder, essential oils, drink lemon juice every morning, take digestive enzymes etc. You name it, I do it. The problem is that at that particular moment in my life when we got the RV, I was nursing. That means my hormones were crazy, my body was extremely taxed after giving birth and nursing 4 children. I mean, I was either pregnant or nursing 8 out of the last 10 years. Since I was nursing I wasn’t doing my saunas. We just got finished remolding, so we had an extra toxic load. And, I sprained my back. I decided to take 1-2 epsom baths every day to help my back. The problem with that is I was blocking my detox pathways. Andrea suggested we do 23 and Me genetic testing. I can’t read the results, but she can. She had the results translated and gave them to me. They revealed that for me specifically, sulfur, histamines and biotoxins all compete for the same pathway and I clogged it up with my epsom baths. I also eat a high sulfur diet with a lot of fermented foods, kombucha, kefir water, kale, broccoli etc. So in order to eat histamine and sulfur rich foods, my toxic load needed to decrease.
On top of that, the last day in the RV I had a glass of wine, which has sulfur and histamines. And I left the baby that day and didn’t nurse all day. I went from nursing every 2-3 hours to not at all. My hormones were on fire. I wanted to stop nursing because that last week I felt awful and my test results were starting to trickle in. One revealed that I had Hashimotos. A thyroid disorder. My thyroid has always been fine. I don’t eat gluten so that was really surprising. Gluten is tightly linked with any thyroid issues. Everything just felt off, and I knew my body could no longer handle nursing my 11 month old so I stopped that last day in the RV. I was an emotional wreck and decided to have a glass of wine. It was all the perfect storm to get a great big figurative punch in the gut.
I was completely knocked on my ass, but at least my kids were ok, at least I thought. I felt relieved that we learned all of this, and I knew that I just needed to give them binders (charcoal, clay, carbonated bamboo) every day and they would be fine. They already took fish oil and probiotics so I would continue with those as well.
As for myself, I was sprouting peas to raise my enzyme diamine oxidase (DAO). DAO is high when pregnant and nursing and then it goes down after. I stopped nursing abruptly which didn’t help. You need DAO to balance histamines. I couldn’t use my ozone sauna or the infrared yet because they were both in our lower level and it was being ripped up to remove the carpet. We tested the whole house for mold and it was fine, but at that point we couldn’t handle any toxins. Carpet is a toxic hazard regardless, and we wanted to get rid of it for a while anyway.
I was able to get LDI therapy (Low Dose Immunotherapy) at Restorative Medicine, and that changed my life! It is used to treat Lyme, and also mold illness, as well as food allergies etc. Dr Hirani, in California, has been using it to successfully treat autism. LDI is almost like a homeopathic vaccine. It helps protect from future mold exposures.
Within 2 days of receiving LDI therapy, I stopped crying, my vision was much better, my energy was better, and I felt like I was going to live to see my children grow for a very long time. I was slowly able to add in more foods to my diet. It’s been almost 3 months and I still can’t eat berries or citrus, but I can eat most fruits, and all vegetables. My scalp psoriasis is gone, but it did return when I tried some berries, and when I tried to add lemon to my salad. I also have a red dry spot near the corner of my mouth that returned when I tried those foods. I tried going out a few nights ago, but I had to leave. I got hot and felt like I could pass out. I’m sure the carpet was moldy. My immune system will get back to where it was, but I’m not taking any chances right now. I’m able to do our ozone sauna and infrared every night to open my pathways, and detox the mold, heavy metals, and any viruses that are hanging around. I feel well, but not totally myself. After being exposed to mold I can feel it the next day. It’s like a moldy hangover. My head hurts, but I’m ok. As I mentioned earlier, I get psoriasis when I’m pregnant and nursing. It takes a lot to tax my body to the point of CIRS and luckily there are no more babies in the works for us, so this won’t happen again. The Hashimotos is gone. Fortunately, I started feeling better because I was about to be hit with taking care of Noah’s illness.
The last weekend in August we went to an indoor farmer’s market. Noah said he didn’t feel right when we walked in. People who are genetically susceptible to mold, like we are, can sense it. If you’re one of those people, I urge you to get checked. I should have left, but we did a quick loop and left within about 20 minutes.
Later that day Noah couldn’t breathe. We knew it was the mold. We knew the hospital would likely not know what we were talking about, but we had to take him. They said he must have allergies and to give him Claritin. My heart breaks for people who have been suffering like this and can’t get answers. We were just fortunate enough to know exactly what was going on. Everything was a mess, and yet perfect because we knew what was going on. He came home, calmed down, and was able to go to bed.
The next day all hell broke loose. He couldn’t breathe. He was flailing, making repetitive sounds. He was exhibiting autistic-like behavior. It was the stuff straight jackets were made for. The most terrifying thing I’ve ever seen. The baby and three year old were scared. Even my tough 7 year old was scared for his big brother. And of course I had to act like it was no big deal.
This is a video (I deleted the video for my son’s privacy) of some of what was going on with Noah. The last segment is the screaming. That was pretty consistent for the first three weeks. There are more disturbing videos, but Noah didn’t want me to include those and I don’t blame him. I just wanted to show how bad mold illness can be. I also want to share because I do believe there are autistic children out there who actually have mold illness. To be clear, Noah is not autistic, and the behavior has passed. Mold illness can exhibit itself as many different things, and most doctors have no idea about any of this. Even things like MS, Alzheimer’s, you name it, it could be mold. Mold just completely hijacks your brain.
I happened to have CSM (cholestyramine). Andrea suggested we try it for Noah at that moment. It was delivered just two days earlier from a compounding pharmacy in Florida. It was a Sunday, and it was the only thing that could have helped him in that moment. As if God himself had hand delivered it. It’s a cholesterol drug that has been used as an effective toxin binder. It’s part of the Shoemaker Protocol for Mold Illness. I was going to use the CSM for myself, but hadn’t decided yet. So there it was. We tried a little, and nothing. A little more, nothing. We gave him four times an adult dose and within ten minutes we had our Noah back. BUT, two hours later it started again, and we had to give him 4 times the adult dose to bring him back. This lasted for a few terrifying days. Could it be possible that our almost 10 year old son was going to be autistic?
Dr. Keith Berndtson works with children with mold illness and Lyme in Chicago. We flew to see him the following week. He is a wonderful man. A very kind doctor. He basically told us we were doing everything right and to keep going. He had never heard of anyone giving a child that much CSM, but if it was working it was ok to keep doing it. Most people Herx (The Herxheimer Reaction is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea), but Noah was getting better.
During the course of about 3 weeks I had to give Noah CSM every 2-3 hours. He needed to be massaged with calming essential oils to fall asleep. He was in excruciating pain. His stomach hurt, his head hurt. He was sensitive to light and sound. He was scared. He was seeing scary faces. He would shake at night, and scream out. He would hold on to me, shaking like a drug addict going through withdrawals. He needed to play on the IPad every second because it was the only thing that could distract him from his pain. Technology, especially WiFi is not good for mold illness, but it was the only thing that would make him calm down a little bit.
At the end of 3 weeks he started Herxing with the CSM so I knew we got to the point where we needed to switch to regular binders like charcoal and clay. We got his TGF-B1 done and his numbers went from 37,000 to 4,000. Truly remarkable. The CSM did the trick and I thought we were going to be ok.
Then his stomach pain became so intense we had to go to the ER. The thing with CSM is that it needs to be taken with apple juice. Apple juice can really tear up your stomach because of the malic acid. The other thing with CSM is that you need to poo regularly or you can get painful constipation and not release the toxins that its binding. We weren’t sure which one of these presented an issue for him, but something was definitely wrong. An X-Ray at the ER revealed that even though Noah was going poo 2-3 times a day, he was constipated. We added magnesium and his stomach was much better within a few days.
That first month was insane. He was screaming a lot, and I had to guess what he needed on an hourly basis, around the clock. More aloe? More fish oil? More CSM? More essential oils? More Rescue Calm? More magnesium? More Quercetin? We got through the thick of it, and here we are, almost 2 months later and we are still working through it.
Noah is not yet able to go to school. (It’s been 3 years, and he’s now in school and doing extremely well) The past two weeks have been like this: 2 good days, 2 bad days. Then 3 good days, 2 bad days. Then 6 good days and 2 bad days. So he’s making progress and getting better. He is no longer sensitive to light and sound. He no longer wails. A bad day means his stomach hurts, his muscles hurt, and sometimes his head. He no longer needs the IPad to distract him on those days, but he does need to just watch TV because he doesn’t feel well enough to do a Lego, or read a book, or play a game. Rebounders are great for the lymphatic system, but even two weeks ago Noah couldn’t do the rebounder without getting sick. It just stirred up too many toxins. Now he’s able to do the rebounder for 15 minutes every day. I dry brush him every night. We get lymphatic massages at the house once a week. A rolfer comes ones a weeks to work toxins out of our tissue. He takes an infrared sauna and ozone sauna with me every night. He’s taking supplements to support his liver, and he’s feeling better every day.
Most schools have mold issues somewhere in them, and I’m sure his does, as he was sick all last year. He needs to be VERY stable before being subjected to a potentially mold building for 7 hours a day. Henry got croup after two days of school and he’s had a stuffy nose ever since. They both received LDI to help protect them, but our immune systems need time to heal. Eventually we will be healthier than ever. Now that we know our genes, we know what to do. We will always take a daily binder, DHA and probiotics. My children have been through a lot, but fortunately they won’t have a lifetime of going to doctors like I did. They are now set up for very healthy, productive lives!
My friends have asked how it was caring for three other children during this, but to be honest it was a blessing having the others to pull me out of it. You can’t get too down when you have an adorable baby who makes you laugh, and I felt like I owed it to the others to stay upbeat and happy. It was a fake it ’til you make it face I had to put on, but it helped not only them, but me as well. We were all still able to find joy in our everyday lives, and everyday had new meaning for me that’s for sure. I’m so grateful for our lives, and for all the amazing people who made our journey a success.
As for Ben, 3, and Harlow, 1, they are both doing well. (They are now 7 and 4)Harlow gets charcoal with her apple sauce every day, and Ben takes Charcoal and Clay every day when I pick him up from 1/2 day preschool. Harlow did get a rash, and Ben changed a bit behaviorally (anger), but that all past and both are doing well. My husband didn’t get his genes tested, but he didn’t get sick so he’s likely not mold susceptible.
P.S. In a later post I’ll share specifically what supplements we use. There is just too much to share in this one post. I could easily write a book on all of this at this point. Also, if anyone is wondering why I haven’t been doing posts the past few months, now you know. Well actually I stopped when the baby started crawling. That always kicks my mutt for a few months, and then this happened. However, we are back to trying recipes and I’ve got some great ones to share now that we are getting our lives back!
- C4A – Indicative of recent mold exposure
- TGF-Beta 1 – Indicative of longer term mold exposure
- AntiGliadin Antibodies
UPDATE: November 2019: I cannot go through and proof that whole post- it’s too emotional. I just wanted to add that we are all doing very well. We are all functioning at a high level and it’s behind us. I’m forever grateful for the lessons I have learned. It propelled me into my career as a functional diagnostic nutritionist. I never want to feel helpless, or not in control of our own health. I’m thankful for the knowledge I gained, and the compassion I now have for my clients. I’m thankful I learned the important lesson of taking a daily binder given the increasingly toxic world in which we find ourselves. I’m thankful for everyday we have in good health.
I take charcoal. It does cause firm stools that can lead to constipation.
I am so sorry this happened. I have children around same ages. You take such good care of your kids so this had to be very upsetting for you. Mold is a bad. I felt so bad for Noah. Im glad you are all on the mend. Do you have any tips youve learned to keep it at bay in the house. Thanks for all the info over the years, you have been very helpful to me.