Mystery Sick? Suspect You Have Mold-Related Illness? Read this…

Here’s what I wish I had known about CIRS, MCAS, mold, chronic illness and more…

Have hope. Photo by Yohann Lc on Unsplash

Updated with new resources June 2024. All updated sections will be in bold.

I am writing this piece to provide an unbiased list of resources and information for you to begin pursuing treatment as it relates to CIRS / mold / mycotoxin illness. (I am not going to get too into testing or remediation as that is another rabbit hole. But this website is solid.) When dealing with mold illness, a lot of the top search hits are there due to SEO. Within many of these blogs, there can be tons of affiliate marketing. As someone who wasted a lot of time sorting through what works, what doesn’t work and what is a genuine search hit — I am creating this primer as a jumping off point for others.

Every source or link I list below is a direct link with zero affiliate marketing from myself. I am not going to disclose which treatment protocol / s I have done so as to not bias you. What I’ve found is it’s important to come to your own conclusions as to best next steps. Trust your gut — even if it doesn’t feel so good right now. ;) I will share my opinions on diet and healing modalities I’ve tried.

Disclaimer: I am not a doctor and this piece does not intend to diagnose, treat or prescribe. I am simply sharing my experience, strength and hope as it relates to over two years of experience with this subject. I’m going to operate from the assumption that you’ve been diagnosed with or suspect mold and go from there.

The most challenging part of this journey is you’re not only sick, but your house is. The place you love and call home. It is emotionally so challenging. So, to begin, let’s talk about stress.

Photo by Ravi Pinisetti on Unsplash

Vagus Nerve Support

I get it, you want to heal fast. This may not be that. So, let’s start healing by preparing mentally to heal.

By the time most folks get a diagnosis, they’ve been through copious gaslighting. If you’ve been told your anxiety is “all in your head,” this is for you. If you’ve been told there is only “one way” to heal this (there isn’t imho), this is also for you. If you feel low on hope, this is for you. I have been there. Sometimes I still am and then I get out again. It’s an endurance sport.

What I notice for those of us in this camp, we tend to be over achievers. So, an illness where we have to slow down and take things one day at a time is very hard. This is part of the lesson of chronic illness. The gift is you will become far more intuitive with your body.

Update, when I initially wrote this, I had no idea how important this initial passage would become. In famed “mystery illness” doctor Neil Nathan’s most recent book The Sensitive Patient’s Healing Guide, he details how the Limbic System and Vagal Nerve become disregulated with mold illness / CIRS / MCAS. For sensitive patients (and anyone who falls in the 1 in 5 who react strongly to mold should consider themselves in this camp), beginning your healing with Limbic System and Vagal Nerve support can be critical to tolerating treatment. Dr. Nathan suggests programs like DNRS, Gupta Program, Primal Trust etc. for the limbic system. I will be honest, there are many paths that will achieve this goal. Before I was even diagnosed with mold, I did 30 days in an Intensive Outpatient Anxiety program and 80% of my sensitivities disappeared. Other neuroplasticity-focused programs like Dr. Datiz Kharrazian’s Save Your Brain program, Dr. Joe Dispenza’s Intensive and Progressive Course would also work (and I know a functional MD who prescribes it) or Re-Origin’s program.

That said, these are costly IMHO (nearly all start at $300) and if money is an issue, I would suggest finding free youtube videos (on limbic nerve and / or vagus nerve support, neuroplasticity, DNRS etc.) and / or using an app like Insight Timer and beginning a daily practice. Dr. Nathan’s book suggests beginning slowly. Also, I recommend buying his book/s digitally so you can search symptoms in real time.

Doing 20 minutes a day of neuroplasticity support can help

This YouTube video is an AMAZING overview on Limbic System

*Also, for some reason, folks prone to addiction tend to be more likely to be mold sick. If you’re a recovering alcoholic in 12-Step recovery, increasing your meetings and service work can dramatically support your healing.

I highly recommend immediately starting stress-relieving activities such as any and / or all of the following

• Yin Yoga
• Yoga Nidra (Insight Timer helped me greatly during insomnia bouts)
• A consistent Meditation Practice
• Prayer
• Therapy
• Hiking
• Lymphatic massage
• Acupuncture
• Nature Walks
• Energy healers
• Recovery Meetings (increase the amount)
• Activated breathwork / breathwork circles (Breathwork was so powerfully restorative for me that I became trained as a facilitator so I could help others)
• Any slow or creative activity that brings you joy.

I highly, highly recommend master herbalist Asia Suler’s book Mirrors in the Earth: Reflections on Self Healing from the Living World. Asia’s own journey through chronic illness (Lyme) and healing comforted me so much. Each chapter has a different restorative healing exercise.

Photo by v2osk on Unsplash

Mycotoxin Testing

When it comes to internal mycotoxin / mold testing there are two different camps. If choosing urine testing, try to use a sauna or take glutathione before. An additional note with urine testing is that it is not uncommon to begin treatment for mold illness and then test higher on your subsequent mycotoxin test. This is due to drainage pathways being open and the body able to release more toxins.

• Dr. Ritchie Shoemaker suggests testing for a number of markers such as elevated C4A levels as evidence of toxic mold burden. Those practitioners who follow the Shoemaker protocol are generally very opposed to urine testing and think it only reveals what molds were in recent food. One thing I like about C4A testing is that it allows you to see if you’re still being actively exposed. This is useful post remediation. That said, I don’t really find his genetic testing useful. Who cares if you have the “dreaded gene” or not. If you’re very sick with mold illness, you don’t need a test for that. You know you have it. Mold patients are so sensitive that you don’t need more bad information jeopardizing your limbic system.
• Dr. Neil Nathan and most other famous mold doctors do use mycotoxin urine lab tests. These tests are problematic because they can vary wildly in results. That said, where they are useful is in seeing exactly what molds are showing up which, if you follow a non Cholestyramine-binder approach or a modified Shoemaker protocol approach, is advantageous in allowing you to custom target each toxin.
• Lastly, there is the MARCoNS test. This is a step further and allows a practitioner to see if mycotoxins have colonized the sinus pathways. These can not be addressed by binders generally and require nasal spray etc. Multiple labs run this. Work with your provider.

For Shoemaker labs eg. blood tests:

• A prescribing doctor will order a number of labs that you will handle at your normal lab or have a mobile phlebotomist come draw.

MARCoNS:

• This is an at-home nasal swab test (similar to a COVID test)

Examples of urine tests (you can buy these on your own):

• Vibrant Wellness Total Tox Burden — this test will look at mycotoxin, heavy metal exposure and more
• Mosaic DX (formerly Great Plains Laboratory) Mycotoxin test — I am hearing from Doctor friends that Mosaic has had some issues lately and they now prefer Real Time Labs Mycotoxin tests.
• Real Time Labs https://realtimelab.com/mycotoxin-testing/

Photo by Toa Heftiba on Unsplash

Supplements

Big pro tip: do not take multiple ingredient supplements while ill. If you react to it, you have no idea which ingredient triggered you. When starting a new supplement, monitor your symptoms. If you begin noticing any swelling, palpitations, anxiety increasing over the next 3 days to two weeks, stop the supplement. What is dicey here is that your system may be over reactive and when it’s calm, you can tolerate that same supplement or medication again. But when in a disregulated state, you must go slowly.

Only use high quality supplement brands eg. don’t buy your supplements at Costco or trust the cheapest option on Amazon.

High quality brands my doctors use and that I currently take supplements from: Designs for Health, Life Extension, Jarrow, Pure Encapsulations, Seeking Health, BodyBio, Vital Nutrients, Thorne Integrative, Cellcore, Apex Energetics, Gaia Herbs, One Diem, MetaGenics.

Photo by he zhu on Unsplash

Treatment

Unless you are dirt broke with zero income, please do not attempt to treat your illness yourself. Trust me, I thought I was a low grade medical professional and consistently wasted money / made my life difficult. CIRS / Mold or Mast Cell Activation Syndrome (we’ll get to that one in a sec) often lead to multiple nutrient deficiencies. You have to have appropriate lab work to get your body stabilized with the right nutrients before beginning treatment and most patients can not start at the full detox dose. Having a trained practitioner who can help you is critical. For example, I had horrible panic during my initial illness and a functional medicine MD realizing my Ferritin was 6 (VERY LOW) then prescribing iron pills changed my life and sleep overnight.

Baby Steps?

If you really want to try something to help yourself in the meantime, you can try infrared sauna sessions to the level you can tolerate. If you feel ill the next day, do not repeat them or lower your time in sauna. Be sure you are adequately hydrated and stock up on electrolytes. (I use BodyBio E-Lytes). Lymphatic massage is another easy thing you can do. But the best place to start is just simply cleaning up your diet (addressed below) and engaging your parasympathetic nervous system by de-stressing. It will make a huge difference.

Wait, What’s Mast Cell Activation Syndrome?

If you feel like you’re suddenly reacting to everything from supplements to foods you normally eat, you likely have MCAS. For me, it started with a red neck that was itchy. It would come and go. I then started an ayurvedic cleanse with a ton of herbs and went into nearly hourly panic attacks and I have no history of panic attacks. Overnight I couldn’t eat foods I normally ate. Then raging insomnia, heart palpitations, fatigue, joint pain etc.

In my case, when these flare ups happen… they last a few weeks and will subside once I a. remove the trigger (could be stress, a supplement, medication, weather etc.) b. normalize nutrients that have been depleted (this is where having a doctor trained in this who orders appropriate labs is critical), c. adopt a short term low histamine diet and d. reduce stress. Pretty soon my food tolerances come back and I feel better. This is sometimes not the case for folks who have been sick for a long time. I have found this website helpful during flares.

One note that Dr. Nathan’s book points out is that mold-sensitive individuals who suffer with MCAS flares, will often see them reduce as their treatment progresses. This has been my experience (and through multiple re-exposures and MCAS flares).

How to find a great practitioner…

A great practitioner will give you a custom approach and not just slap you on some program they put everyone else on. Be highly suspect of a practitioner who has a set mold protocol that they dump every patient on without adjusting. Also be suspect of a practitioner who doesn’t seem well-versed in this subject. This piece should give you enough knowledge to suss it out. Some questions you can ask:

• Which mold protocol do you generally use? Shoemaker? Dr. Nathan? Cellcore? Dr. Jill? Custom?
• How do you handle Mast Cell Activation Syndrome? (They should be familiar with this. They’ll likely address diet, antihistamine etc.)
• If I have a flare up and need assistance, how do you handle that? Can I text? Should I message through a portal?
• Can you estimate a timeline for my recovery? (Ballpark is usually a minimum 9–12 months if removed from the environment… but hey, miracles happen.)
• Is your practice a full time practice or part time? (I had a doctor who switched to a two-day workweek as they wanted to retire and began charging more because of it. This schedule did not work for me as I was having flare ups so I sought support elsewhere.)

Every mold patient has a different sensitivity level and will have different needs. I have never been able to tolerate a full dose of any detox product to this day. Others can do twice as much and incorporate more aggressive products.

Mold patients can sometimes require a lot of work in the beginning. You need to be clear on how to communicate with your doctor if you react to something. Will they charge you for additional email questions? (This has happened to me.) Will they gaslight you if you say you’re reacting to something benign? (This also happened to me by a functional MD who was not well trained in dealing with mold illness nor MCAS.)

A good practitioner will be familiar with the steps I outline in the next passage. They’ll likely bring up a binder, they may discuss terms like CIRS (Chronic Inflammatory Response Syndrome — which is what Shoemaker refers to Mold illness as formally) or MCAS (Mast Cell Activation Syndrome), they’ll know this takes time and will have the availability to support you. They will also be kind and likely need to establish some boundaries with you because… you know, it can be easy for mold people to be very disregulated and needy. Work on developing your own faith that you are healing.

Practitioner Qualifications

I will bet a gajillion dollars traditional doctors will not be able to help you. It’s not impossible, but the fact that Medicine 2.0 (as Dr. Peter Attia calls it) involves medical teams who don’t speak to each other usually lead to a mold patient seeing a gastro here, an endocrinologist there, a hematologist here, an internist there… it’s a mess.

The correct practitioner will be a Functional Medicine medical professional deeply experienced in mold and mycotoxin illness treatment. Full stop. One helpful piece of advice I received was, “Look for someone who got into functional medicine because they had to eg. someone in their life got sick or they got sick vs. someone who wanted to make more money and says things like, “They wanted a change.’”

This is where I’ll point out that a social account with a lot of followers and great marketing does not mean someone is a good doctor — it means they’re great at marketing. There are one or two very popular functional medicine MDs who I find to be a bit problematic. Yet, they have very popular practices. Popular does not = effective.

The title of MD or Naturopath or Alternative Medicine provider doesn’t matter. However, I have found Functional MDs, PAs or NPs easier to work with as they prescribe their own labs / meds. Trust your gut on who to work with.

Also, you may stay with a provider for awhile and then decide to change. That’s OK! Trust that you will know when someone is right and you will know when to change. But sometimes you also have to trust that you’re not a medical professional and need to listen. :)

Photo by Rita Morais on Unsplash

Popular Mold Protocols

When it comes to protocols, I have known folks who have healed a million different ways. I am someone who always seeks the BEST way to do things. However, my biggest takeaway from this healing journey is that everyone finds their own healing path. Your path might involve one of the treatment protocols below — or it might not! I have a friend who healed with no binder… just IVs, saunas, stress reduction and MCAS meds. Others would say that’s impossible. Nothing is impossible.

Also, if you have concurrent diagnoses like SIBO, Leaky Gut etc., always treat MCAS and Mold first. I was told to take Xifaxan when I was (incorrectly) diagnosed as having SIBO. Xifaxan is a super mild antibiotic that only targets the gut. I went into near anaphylaxis when I tried to take it. Three days of Xifaxan sent my body into weeks of upheaval. I have had many friends with SIBO try to treat it and go into severe panic — if this happens, it’s a sign there may be underlying mold illness. Treatment should not involve panic.

• The most famous CIRS / mold illness protocol is Dr. Ritchie Shoemaker’s protocol from Surviving Mold.
• His contemporary Dr. Neil Nathan’s protocol involves a customized approach that includes aspects of Shoemaker’s protocol with variety of different binders and nutrients. His approach is more well-suited for sensitive patients.
• Quicksilver Scientific / Dr. Jill Carnahan’s Miracle Mold Detox is protocol created by Dr. Jill Carnahan. If you are homozygous for MTHFR / COMT genes or have Gilbert’s syndrome, you will need to modify the multivitamin for an Adeno based B vitamin vs. a Methyl B vitamin. Also, one month of this protocol is not enough to be healed. It would be repeated monthly for a set period of time as determined by your doctor. If someone is not sensitive and only mildly mold sick however, this protocol can be a great DIY.
• Cellcore Protocol Phase 1–5 (This complete protocol can take 9–12 months depending on illness severity.)
• There are others that work as well, so if it’s not one of these don’t sweat. I’ll tell you what to look for below…

I’ve done a few of the above protocols. Some I really liked, one I did not. I’m not going to share which is which because I don’t want to introduce bias into your journey. You’ll find the path.

Nearly all mycotoxin protocols involve the same detox protocol steps — they just vary in products used. This is another way you will can suss out if a medical professional is versed in treatment. I’ll link to an article that is succinct on the topic:

• Every numbered step on this page is clickable so you can read more.

Very important — you don’t need to suffer to heal.

I want to say it again — You don’t need to suffer to heal.

If you’re having severe reactions to any treatment, please speak to your doctor about dialing it down or stopping it. If they don’t agree, I’d switch doctors. Dr. Neil Nathan talks about the importance of baby step healing in his Mold and Mycotoxins 2022 book. I know it can seem counter intuitive to take a tiny dose or stop treatments after being inflamed post sauna or massage or PT, but the body can be put in huge upheaval if you overwhelm it. These upheavals can set you back even further so don’t view a baby step as failure, it’s progress.

Photo by Jordan Christian on Unsplash

Diet

Another controversial topic is the right diet for mold / mycotoxin illness. I’ll be real, there are a million takes here. I’ll sum up the greatest hits. Eat a whole food diet like paleo or plant based paleo. I personally have had so many anemia issues during this journey that I can not be plant based. Listen to your body first and foremost.

Reduce Inflammation

• No gluten or reduced gluten
• No dairy (I am usually 100% dairy free, but when my health is in good shape I cheat here and there. I’ll try to opt for A2 dairy however.)
• No or reduced sugar (I have legit never done this one super well.) Dr. Will Cole advocates for raw honey in his practice. You do you.
• Reduce processed foods

Reduce Mold Exposure

• No or reduced alcohol (I am sober 15 years so I have one up on all of you…)
• No peanut butter (PB is hella moldy which makes me sooooo sad)
• No moldy coffee (TBH, we use Purity which is the only true mycotoxin free coffee, but when out and about I don’t sweat it. When I was mega sick, I had no caffeine at all.) Supposedly, Bulletproof is mold free but they’re not forthcoming about releasing their testing. You can read this and go down the rabbit hole on it.
• Reduce grains — some say no grains, I just refrigerate my rice now.
• No mushrooms. Yeah, all that microdosing you’ve been doing? Pls. stop. Mold is fungus is mushrooms is fungus and yeah, sorry. They may not be the panacea everyone is hyping.
• No fermented foods (pickles, vinegars, kombuchas etc.) — I don’t do kombucha at all now, but here and there I have a pickle. It’s hard to avoid vinegar.

Some say

• No oxalates (this means potatoes, root vegetables) — I have never done this — that said, if chronic pain is a part of your mold journey this can indicate oxalate overload. If you suspect this, read Toxic Superfoods by Sally Norton, discuss with your practitioner and slowly reduce oxalates.

If you find you can not tolerate many foods, this signifies a mast cell activation flare and you should try to reduce histamine through a temporary low histamine diet. I use this supplement before eating high histamine foods when I’m in a flare (and sometimes use their high powered Pure Max version). During these flares, I find I often can’t tolerate foods I normally can (like almonds, for example). In my experience, as I heal, I can tolerate them again later. Some people can’t. What one doctor told me is that your body is the best allergy test, so trust that. I can personally feel when my oral tolerance level improves. It’s wild.

DIY Remediation

I recommend that folks don’t remediate on their own and do not use EC3 Microbalance fogger to remediate. They are huge on affiliate marketing. I do like their products, however their fogger is more for maintenance of a clean home than remediation.

I adore Jennifer from Mold Help For You. She is an inspector herself who (also trained in remediation) has been mold sick. The remediation world is full of shady inspectors and remediators who circle jerk each other into kickbacks. Jennifer charges a reasonable amount for a consultation call and has no vested in what path of inspection or remediation you choose.

If money is no object, advocates of Dr. Shoemaker utilize Larry Schwartz’ SafeStart IAQ. Others use John Banta. Full disclosure: I reached out to both of them but ultimately, did not use either.

FWIW If your mold exposure is widespread, you may want to not only move but toss all clothes and soft items (curtains, furniture, books, papers, vinyl sleeves, paintings). I have a lot of expensive clothing I was not about to toss, so I treated them with Remedy and / or EC3 Microbalance laundry detergents. That worked for me. Other friends, tossed everything. You do you.

One note on home testing, I am very skeptical of ERMI / HERTSMI2 home testing. This is a dust-based testing. My problem with it is that I have known extremely clean individuals who have done this test and received a great score. While others receive a negative score and feel fine. It can send you down a rabbit hole. Many mold doctors swear by it. My personal take on home testing is air samples alone are bullshit. You need someone who can use a combo of infrared testing, wall samples and more. If you’re in the Southern California region, feel free to reach out and I’ll share my recommendations.

OK… so…

Hopefully, this gives you a great jumping off point. If you have any remedies or protocols or tips that worked for you, that I haven’t addressed… please leave them in comments below.

Lastly, I want to end with this. Don’t go on Reddit or Google a bunch of stuff. Nobody healed is on Reddit. Nobody. Don’t attach yourself to the idea of being sick forever. This road is up and down, but you will heal.

I didn’t tell people what I was deailng with for quite awhile once diagnosed as mold sick because I was misdiagnosed at first. I wasted so much time identifying with an incorrect diagnosis that when I got the right one I realized — we are more than a diagnosis. Your journey will help others and this is an opportunity for you to become a more spiritual, soulful and helpful being. The greatest healers have often been those who have gone through the great trials. Take it easy. Keep it simple.

I often ask myself, what’s the easiest next step when I get stuck or down a K hole on this journey. That’s a good forcing function.

Just for today, begin with nurturing your nervous system.

Photo by Brett Jordan on Unsplash