The FAQ is a helpful page to read that goes into details of treatment, this page is an overview.
What to be careful with:
- Do NOT do the CIRS treatment out of order. Start from the bottom of the pyramid and work your way up (combining treatment with diet.) Focus on getting out of exposure/remediating your environment – nothing is more important than that.
- Do NOT ignore diet!! If you’re suffering – go low carb/paleo or dairy free keto and then try to wean into the lion diet. This will help your symptoms dramatically faster than going the “traditional” mold treatment way.
- Do NOT IGNORE CLEANING. Cleaning and throwing away your stuff that was exposed to mold is the most important thing you can do. Way more important than binders and medication.
- Do NOT just take antifungals. Antifungals can breed antibiotic resistance in bacteria in as little as one month. Doctors treating MARCoNS with anti-fungal nasal sprays had patients with more resistance to treatments than other patients, within a month. Do not take them as a spray or systemically. There’s also evidence it can seriously badly contribute to grey matter atrophy. If you try the CIRS treatment and it doesn’t work and your environment is definitely clean and you’ve thrown away your stuff that was in the previously moldy house then it may make sense to see if you have an actual system colonization mold issue. But honestly diet like the lion diet can take care of a lot of that by starving it if your environment is clean.
- Be very careful with the use glutathione – glutathione can possibly increase levels of gliotoxins (according to one paper) and make you feel awful if you detox too fast with a high dose. It can make you feel worse if it’s given to you in a push at the end of an IV rather than a drip. Some people swear by it though. So I’d recommend testing it out like anything. I just started with 100mg of oral glutathione per day and I think that’s helping. So if you’re hypersensitive do that rather than going straight to IV glutathione in pushes.
1. Test your body
You need to have 8 or more symptoms, exposure to water damaged buildings or other toxins, genetic predisposition, and 4 of the blood markers seen in CIRS need to be wonky to be diagnosed. The carnivore diet does reduce the inflammatory response (paper being published soon). Check out the FAQ to find a knowledgeable doctor! And you can get lab work done here if you want to at least see your markers yourself as fast as possible.
Symptoms: (more than 8 of these is positive for CIRS)
- Weakness, assimilation, aching, headache, light sensitivity
- Memory, word finding difficulties
- Concentration difficulty
- Joint pain, AM stiffness, muscle cramps
- Unusual skin sensations, tingling
- Shortness of breath, sinus congestion
- Cough, thirst, confusion
- Appetite swings, body temperature regulation problems (hot or cold), urinary urgency
- Red eyes, blurred vision, sweats, mood swings, ice pick pain
- Abdominal pain, diarrhea, numbness
- Tearing, disorientation, metallic taste
- Static shocks, vertigo
Common Misdiagnoses and Other symptoms you might recognize:
- POTS (blacking out when standing up)
- PANS (kids)
- Urinary urgency (bed wetting or clothes wetting in kids)
- Dehydration (excessive thirst – adults and children)
- Depression (severe)
- Mental disorders
- Neurological diseases
- Autoimmunity (MS, Lupus, Arthritis)
- Allergies to everything
- Digestive problems
- Long COVID
- GERD or acid reflux
- Fine resting tremor
- Volatility/rage randomly (e.g. punching walls)
- Muscle weakness (85% of CIRS patients)
A combination of VCS testing and symptom cluster gives you a 98.5% accuracy of CIRS according to CIRS doctors/papers.
2. Test your environment
Making Sure You’re Not Exposed: Test Your Living Areas
This is the most important thing you can do. You will not heal if you’re being re-exposed even if you’re treating CIRS. Even with treatment, exposure will cause symptoms. Everywhere you “live” needs to be tested. That’s your house, school, and office if you don’t work from home. If you’re experiencing symptoms (or your child is), everyone who lives in the house needs to test where they spend time as well, as toxins can be brought home from infected buildings.
3. Remediate your environment
You need to fix where you’re living. This is the most important step in treatment. I put together a list of easily implementable cleaning techniques and products under FAQ to at least get levels in your house down. I also linked companies that can do full on renovations. Keeping your house clean can help a lot but removing actual water damaged walls and floor is necessary if they’ve been seriously damaged. Please read the FAQ for more information on remediation and cleaning. Don’t freak out, it’s fixable, but I’d be lying if I didn’t say it’s a pain.
Shoemaker has shown that 95% of symptoms come back if re-exposed for 8 hours per day for 3 days by doing re-exposure tests on treated patients.
ERMI/HERTSMI-2 testing for molds:
Overview and availability of tests
The ERMI tests more strains of molds, the HERTSMI-2 score can be derived from the information on the ERMI test to give you a score of the worst molds for your health.
Scores: You want an ERMI under 2 or even under 1 for very sick people, and a HERTSMI-2 under 11. Note: I’ve been staying in a hotel with an ERMI of 2 and a HERTSMI-2 of 4 and still feel like garbage (although much better than the Florida house that scored 20). Technically the ERMI score of 0 is where the 50th percentile house is in the US in regard to mold so I don’t really understand how 0 is good enough for CIRS. But that is what Shoemaker has shown is good enough for CIRS.
Mold hides behind walls and isn’t always visible, but if it is visible it’ll be in commonly water damaged areas that can include:
- Sinks (underneath and in the sink)
- Washing machines (particularly front loading – wipe these with vinegar each time they’re used and dry thoroughly – replace the rubber ring if it’s moldy ASAP)
- Shower grout (bathtubs are safer)
- Anywhere with any water damage (bubbling paint)
- Anywhere showing rust
- Around windows
- Around doors
- HVACs particularly in high humidity areas
Regular mold testers do not know what they’re doing. Calling up anyone will not work. They’ll test the air quality by testing spore count in the air. 0.2% of particulate matter is actual whole spores in air. Everything else is fragments or bacteria. Testing needs to be done extensively, should take a number of hours, and ideally the testers test behind walls in a few areas.
There’s a list of companies under FAQ Helpful Links. I used WeInspect who are VERY good but they’re expensive and are booked 6 weeks out. They’re the best, but ERMI and HERTSMI-2 tests will give you very good answers if done properly, there are other company’s available and the ERMI tests can have turn around time of 24 hours. There’s also link of where to buy them in the FAQ. You can do this testing yourself, but don’t fix the mold yourself – especially if you’re sick. Remediation is complicated but doable.
4. Start treatments
Cholestyramine (CSM) (or Welchol) (prescription):
CSM is a prescription resin, originally used to treat high cholesterol (another reason to increase fat with diet while using this). It’s also used to help with Ulcerative Colitis, IBD, IBS, etc. CSM has worked insanely well for me. It was rough at first – I had intensification reactions (worsening of symptoms) with the full dose. Symptoms for me would feel better almost immediately upon ingestion and then worse while the CSM traveled through my digestive system. The first two weeks were pretty up and down. Intensification reactions are common (particularly in lyme and MARCoNS patients). They can be reduced with EPA/DHA and omega 3 supplementation (or if those are not tolerated, start with a low dose of CSM and titrate up and make sure you have bowel movements every day – use magnesium citrate if needed. Getting the toxins out of you is the goal so BM’s are mandatory daily. Intensification symptoms (your normal biotoxin symptoms flaring up) seem to happen when the CSM moves into the digestive tract re-exposing you to the toxins. Once you have a BM you feel better quite quickly. (Starting CSM and experiencing intensification reactions usually includes a fall in the VCS score (in column D and E) and a rise in MMP-9).
- Find a doctor
- Get the compounded version (unflavored pure resin)
- CSM and Welchol do successfully reduce all symptoms, stop secretory diarrhea, and help improve VCS scores.
- Treatment for children with CIRS is only complete removal from exposures and a binder!
- Side note: Shoemaker never found toxins in stool of patients using CSM – weird. Binding theory hasn’t been proven by finding toxins in stool but it does work to reduce VCS scores and definitely binds bile (where toxins are put from the body).
- Children tolerate this better
- CSM needs to be taken 30 minutes before eating or two hours after to avoid binding nutrients – adding fat 30 minutes after eating helps
- Welchol needs to be taken with food
For people with food and chemical intolerance – diluted VIP may be used before CSM so that treatment is tolerated.
- I found activated charcoal (not prescription) to help my secretory diarrhea and stomach upset before I started CSM. There’s no peer reviewed evidence that activated charcoal, bentonite clay, chlorella, or other binders help improve VCS scores, but anecdotally people do say activated charcoal and bentonite clay can help. They are not as effective as CSM by far. There are also animal studies using charcoal to bind toxins successfully.
People with Lyme or MARCoNS (or toxin overload) can have intensification reactions when starting CSM/Welchol. High dose Omega 3 treatment is highly recommended to start before CSM or Welchol or at least at the same time.
I’d suggest trying the diet that put me in remission even when my environment wasn’t clean. I’d try it as soon you realize you’re sick, even before fixing your house because that takes time. The diet didn’t work as well when I was in a really moldy environment, it still kept me functional. It’ll help faster than anything else in my opinion. An all meat diet is not part of the Shoemaker protocol (he suggests a low amylose diet) however I think it’s basically necessary to speed up recovery from CIRS and deal with current symptoms. It’s anecdotally VERY effective (from over 10 000 people).
Diet can be extremely helpful for a number of reasons. Many foods contain biotoxins and mold. Some are worse than others and those include:
- Sugar and starchy foods (feed candida and other biotoxins in the gut)
- Dried foods (higher in mold)
- Beans, coffee, chocolate (higher in mold), soy
- Grains (higher in mold) including corn. Particularly gluten containing grains
If CIRS causes damage to the gastrointestinal tract and a hyperactive immune system that then reacts to everything (animals, environmental allergens, soaps, detergents, scents, VOC’s, chemicals, even EMF’s for some seriously unfortunate people) it can/will cause a reaction to foods as well, including foods with molds on them. Removing plant foods and even some specific meats and all dairy can reduce the amount of exposure to biotoxins you’re consuming, shouldn’t trigger an immune response as easily, can moderate hunger due to leptin damage, reduces the amount of food that could be leaking into the blood due to a damaged gut provoking an immune response, and doesn’t feed current infections in the gut (such as Candida overgrowths). An all meat diet does this and can be hugely beneficial to patients – an all ruminant meat diet also reduces exposure to toxins in animals that are normally inhaling these biotoxins (pigs and chickens from where they’re kept).
Another potential reason: CIRS patients can’t use glucose effectively. Their cells can be reduced to 5% efficacy for glucose metabolization (especially with chronic fatigue) (Shoemaker). Why not sidestep the entire problem and feed cells ketones? Researchers are seeing if CIRS impacts ketone utilization as well – if so, ketones wouldn’t matter as much. Either way, diet isn’t enough to solve the root problem but it can help survive it.
Shoemaker suggests (directly from survivingmold.com):
You should not: Consume metabolic poisons like sugar, aspartame, Sucralose, monosodium glutamate (MSG), pesticides and insecticides (used on conventional produce), GMOs, antibiotics, growth hormones, and unnatural diets (used on conventional farm animals), toxic inflammatory oils like soy and canola.
You should: Eat foods that are as natural, healthy and organic as possible. Use only organic butter, coconut oil or olive oil.
You should not: Over consume carbohydrates (breads, rice, pastas, starchy vegetables) this will increase your insulin levels. High insulin contributes to every chronic degenerative disease by increasing inflammation in your body. High insulin also changes your androgens (like testosterone and DHEA) into estrogens by stimulating your aromatase enzyme
Another potential reason to use the lion diet after exposure to biotoxins is to use mycotoxin urine tests. Generally these are useless because your diet can impact the amount of mycotoxins you have in urine (you could be completely healthy but have a high level of mycotoxins in your urine if you’re drinking moldy coffee, etc.) but that’s not a factor on an all meat diet. Then there’s another way to measure mycotoxin levels that wouldn’t be available to people with varied diets. In theory.
MARCoNS needs to be eradicated in order to use VIP. EDTA spray plus silver spray 2 sprays 3x a day for 3-6 months kills it. Start 30 days after binders. Gene suppression due to MARCoNS seems to get a lot better after 2 weeks. Shoemaker suggests continuing this to ward off future infections for people with low MSH.
4. Possibly some of these are necessary:
- Peptide, not necessary for everyone
- Used for nose bleeds that won’t stop – in tablet form
- Macrodoses for pulmonary hypotension
- Teaching VIP video ($30)
- Used to be used to correct MMP-9 levels
- Now has a black box warning that Shoemaker thinks is unwarranted and is rarely used
- Corrects TGF-beta if necessary.
- Blood pressure needs to be 130/85 at least (causes low blood pressure).
- Losartan has an active metabolite called EXP3179 that lowers TGF-beta 1.
- Androgens usually fix themselves – don’t add in testosterone.
- 3x a day for a week – measure estrone and dhea at baseline – if androgens go down and estrogen goes up that means estrogen is working on the extra dhea.
- Do not add in an aromatase inhibitor (like clomid) in low MSH patients – it’ll make things worse
Before VIP can be taken the patient needs to have a normal VCS (normalizes after no exposure), normal nasal culture (no MARCoNS), normal HERTSMI-2 or ERMI (living and working areas with no exposure), normal lipase and normal GGTP.
Treatment: Compounded VIP intranasal 50 mcg/dose of 0.1ml. Normal dose is 4x a day. 120 doses/month = 12ml. Use microdoses for chemical and food sensitivities and for serious illness (1/100th or even 1/1000th of dose). Test 1 spray dose in the office (50mcg/100mcl) by measuring TGF beta-1. If it rises more than 33%, the patient is still exposed to biotoxins somewhere. After several months VIP can be cut down to 2x per day.
- Monitor treatment with Nanostring (measures gene expression changes during treatment)
With new exposures CIRS symptoms can come back and the entire thing might need to be restarted so not living in exposure is beyond key unless you want to do this for the rest of your life.
For people with food and chemical intolerance – diluted VIP (1/100th or 1/1000th) may be used before CSM so that treatment is tolerated – for people with multiple chemical sensitivities and food sensitivities this might be warranted.