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Mold Illness: What It Is, 5 Common Misconceptions, and Prevention


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Reviewed by Sunjya Schweig, MD

Mold illness

Awareness of toxic mold’s effect on human health has increased dramatically over the past few years. But mold is only one of the many biotoxins found in water-damaged buildings, and the illness caused by exposure to these toxins is much more complex than most clinicians and patients assume.

Over the last several years, I’ve written extensively about the importance of nutrition, physical activity, stress management, sleep, social connection, pleasure, and spending time outdoors. There’s no doubt that these factors are vital for all of us.

But it’s also true that other factors are just as important to our health, yet far less often considered. One of these is toxic burden.

Toxic burden is determined by two factors: the levels of toxic chemicals and microorganisms that we’re exposed to, and the function of our innate detoxification system. If our exposure to toxins is high and our detoxification system is compromised—due to genetic predisposition, environmental factors, or both—then our toxic burden will be high.

The toxins that adversely affect our health include chemicals (e.g., bisphenol A, or BPA, phthalates, and pesticides), heavy metals (e.g., mercury, arsenic, lead, and cadmium), and biotoxins (toxins produced by living organisms like mold, bacteria, dinoflagellates, and blue-green algae).

Toxic mold illness has received a lot of attention recently, including a documentary created by Dave Asprey of Bulletproof.

While this is surely a positive development, there are a number of misconceptions and misunderstandings about mold illness that I’d like to address in this article. So let’s get to it!

Is the air quality in your home or workplace making you sick? If harmful biotoxins are present, it could be. Find out more about mold illness and learn how to prevent exposure. #environmentaltoxins #toxins #mold

What Is Mold Illness?

First, I’d like to explain more about what this condition is. What we often refer to as “mold illness” or “mold toxicity” is actually a comprehensive and multifaceted syndrome known as chronic inflammatory response syndrome, or CIRS.

CIRS was originally defined by Dr. Ritchie Shoemaker, a former family physician in Maryland. (Dr. Shoemaker is now retired, but he is still actively involved in raising awareness and advancing the understanding of CIRS.)

In the late 1990s, Dr. Shoemaker discovered a connection between a mysterious illness that some of his patients were experiencing and a toxin produced by a fish-killing dinoflagellate called Pfiesteria. Since then, Dr. Shoemaker has linked a similar kind of illness to toxins from a wide variety of microorganisms and chemicals.

Mold in the Human Body

Nearly everyone becomes ill when exposed to sufficient levels of biotoxins, but most people recover once they are removed from exposure. Their detoxification system is able to recognize the biotoxins in their bodies as toxins and eliminate them via the normal mechanisms.

However, a minority of people have human leukocyte antigen (HLA) genes that prevent their bodies from being able to recognize and thus eliminate biotoxins. The biotoxins remain in the body and trigger a chronic, systemic inflammatory response. These are the people who are at a higher risk of developing CIRS.

Symptoms of Mold Illness

Patients with CIRS present with a wide range of symptoms, including:

  • Fatigue and weakness
  • Post-exertional malaise
  • Memory problems, difficulties with concentration, and problems with executive function
  • Disorientation and confusion
  • Headaches
  • Vertigo and lightheadedness
  • Muscle aches, cramping, and joint pains without inflammatory arthritis
  • Hypersensitivity to bright light, blurred vision, burning or red eyes, and tearing
  • Cough, asthma-like illness, shortness of breath, and chronic sinus congestion
  • Air hunger or unusual shortness of breath at rest
  • Chronic abdominal problems including nausea, cramping, and secretory diarrhea
  • A propensity to experience static shocks

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How Do Doctors Test for Mold Exposure?

If you suspect that your surrounding environment has mold present, tests like the Environmental Relative Moldiness Index (ERMI) can confirm it. An experienced mold inspector can perform this test (and ensure it’s done correctly).

Diagnosing CIRS can be difficult (especially given the fact that many physicians aren’t aware of the condition or actively looking for it in their patients, but I’ll discuss that further below). Dr. Keith Berndtson, a physician in Park Ridge, Illinois, has written a thorough summary of CIRS that I highly recommend reading. In it, he highlights the following criteria that a patient must meet to be diagnosed with CIRS:

  1. History, signs, and symptoms consistent with biotoxin exposure. In cases of mold toxicity, history should include exposure to toxin-producing molds as documented by the U.S. Environmental Protection Agency (EPA)-approved ERMI test. In other cases (microcystin, ciguatera, etc.), history should include likely exposure or laboratory evidence of exposure.
  2. A genetic predisposition to biotoxin-related illness based on identification of an HLA-susceptible haplotype.
  3. Abnormalities documented by visual contrast sensitivity (VCS) testing. VCS testing measures your ability to see details at low contrast levels. Dr. Shoemaker and Dr. Kenneth Hudnell—a principal investigator for the U.S. EPA’s National Health and Environmental Effects Research Lab and an expert on how neurotoxins affect the physiology of vision—discovered that the biotoxins affect the optic nerve and decrease the ability to detect visual contrast.
  4. Biomarkers consistent with the neuroimmune, vascular, and endocrine abnormalities that characterize CIRS. If you have a history consistent with biotoxin exposure, a susceptible genotype, and an abnormal VCS test, you are very likely to show the laboratory abnormalities seen in CIRS. Major and minor criteria are a work in progress.

Now, let’s break down five common misconceptions about mold illness. 

#1: Mold Illness Is Not Just Caused by Mold

Yes, I know this doesn’t make sense. Of course mold illness is caused by mold. That’s why it’s called mold illness! However, the biotoxins that can lead to this condition aren’t limited to those produced by mold. They can also include: (1)

  • Fungi
  • Actinomycetes (gram-positive bacteria from the order Actinomycetales)
  • Mycobacteria
  • Mold
  • Mold spores
  • Endotoxins (aka lipopolysaccharides, or LPS; cell wall components of gram-negative bacteria)
  • Inflammagens (irritants that cause inflammation and edema)
  • Beta-glucans (a diverse group of polysaccharides)
  • Hemolysins (exotoxins produced by bacteria capable of destroying cells)
  • Microbial volatile organic compounds (mVOCs; organic compounds released by microorganisms when there is adequate food supply for such “secondary metabolite production”)

In addition, certain bacteria (possibly including Borrelia, Babesia, and other organisms transmitted by tick bites) can also secrete biotoxin-like compounds that can have adverse health effects.

For those who are susceptible, CIRS could develop from exposure to any one of these biotoxins.

#2: CIRS Is Much More Common Than You Might Think

According to Dr. Shoemaker’s research, roughly 25 percent of the population is genetically prone to develop CIRS if two conditions are met: (2)

  1. Sufficient exposure to biotoxins
  2. A “priming” inflammatory event (something that triggers and activates the immune system, such as a serious upper respiratory tract infection or a tick-borne illness like Lyme disease)

Dr. Shoemaker also estimates that 2 percent of the population has genes that render them highly susceptible to developing a multisystem, multisymptom illness after prolonged or repeated exposure to biotoxins. (Side note: unfortunately, I am part of that 2 percent, which could explain a lot about my past history with chronic illness!)

This suggests that roughly one in four people have the potential of developing CIRS when exposed to biotoxins. But how common is exposure to biotoxins?

Unfortunately, the answer is: extremely common.

According to a report entitled Implementing Health-Protective Features and Practices in Buildings issued by the Federal Facilities Council, 43 percent of buildings they examined had current water damage and 85 percent had past water damage. When water damage occurs, mold can grow in as little as 24 to 48 hours.

As alarming as these numbers are, they don’t tell the whole story. Although water damage is probably the biggest concern, mold and other biotoxins can also develop in buildings that are not water-damaged but have indoor humidity levels above 50 to 60 percent. In fact, many experts recommend maintaining indoor humidity levels between 30 and 50 percent for preventing the growth of mold and other biotoxins.

#3: CIRS Is Frequently Missed or Misdiagnosed

As I mentioned in misconception #2, up to 25 percent of the population is susceptible to CIRS, and perhaps a majority of buildings are either water-damaged or have conditions that make mold growth possible. Combine these factors with the increase in inflammatory diseases (which can serve as priming events) that has occurred over the past few decades and you have an environment that is ripe for CIRS.

Unfortunately, the vast majority of patients with this condition have not been properly diagnosed or treated because conventional doctors—and even many Functional and integrative medicine specialists—simply aren’t looking for it. The fact that patients with CIRS also typically meet the criteria for other syndromes and diseases like fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome, post-treatment Lyme syndrome, and multiple sclerosis compounds the problem. The symptoms of CIRS are “non-specific,” which means that they don’t conclusively identify CIRS (or any other disease) by their mere presence.

Testing for CIRS

The VCS test is best performed in the office of a CIRS-aware clinician. However, there are two online versions that can be used as a starting place.

The first VCS test is available on Dr. Shoemaker’s website, Surviving Mold, at a cost of $15. This is a Functional Visual Acuity Test (FACT) that uses a scoring algorithm developed by Drs. Shoemaker and Hudnell to determine the likelihood that a patient is being adversely affected by biotoxin exposure.

The second VCS test is available at VCSTest.com. The raw (unconverted) scores and the contrast sensitivity curve are provided for free, and a $10 donation is requested (but not required) for the upgraded results with detailed analysis and interpretation and a PDF that can be downloaded and shared. VCSTest.com now offers what they call an Online Contrast Sensitivity Test (OCST), which addresses one of the primary shortcomings of online VCS testing: the variability in how different computer monitors and displays handle visual contrast. The OCST features full display calibration, which adapts the test images to each user by taking into account both their display size and individual display characteristics/properties, like their video card, video drivers, operating system, and display settings, including contrast, brightness, gamma, etc. As far as I know, this is the only FACT-based online VCS test that controls for display calibration.

In practice, I think both of these tests can be used successfully as screening tools, but the OCST offered by VCSTest.com has the advantage of full display calibration, which allows for accurate results across any device (helpful in retesting and tracking progress if the patient is retaking the test on an iPad, for example, if the original test was done on a laptop computer).

The VCS test is so accurate that, if it is positive, there is a 92 percent chance that the patient has CIRS. That said, it’s important to note that a positive VCS test cannot be used to rule CIRS in or out on its own, and I have had patients who passed the VCS test who went on to be positive for CIRS, and vice versa.

A list of the biomarkers that constitute a CIRS diagnosis can be found on Dr. Shoemaker’s website. However, if you fail the VCS test, and/or suspect you may have CIRS, I strongly recommend finding a CIRS-aware clinician in your area. You can start with the list of clinicians that have been certified by Dr. Shoemaker on his website. There are other clinicians who are familiar with CIRS and are actively diagnosing and treating patients for it, but are not yet certified.

Diagnosing and treating CIRS is not a “DIY proposition,” as it involves a lot of nuance and complexity that isn’t always apparent to clinicians and patients who are new to the condition. For example, Complement C4a has to be sent out on dry ice to a specialized lab called National Jewish Health Advanced Diagnostic Laboratories in order to get an accurate result. I can’t tell you how many times patients have come to me with a C4a result run through LabCorp or another lab. It’s painful to have to tell them that we need to run these (sometimes expensive) labs again because they weren’t done properly in the first place.

For much more on CIRS diagnosis and pathology, check out my interview of Dr. Shoemaker on my podcast, Revolution Health Radio.

#4: Removal from Exposure Is the First Step in Successful Treatment …

Dr. Shoemaker has developed a multistep protocol for treating CIRS (it ranges from 11 to 14 steps, depending on how you count or combine the steps).

The first step in the protocol is removing the patient from exposure to biotoxins. This involves testing all environments (home, workplace, and recreational) that the patient spends significant amounts of time in throughout the course of their daily life. If mold or other biotoxins are identified, those environments must be successfully remediated (followed by taking adequate measures to prevent recurrence), or the patient must relocate to another home or workplace.

As both a clinician and someone dealing with CIRS myself, I have found step one to be by far the most difficult step in the protocol. Here’s why.

Many mold inspectors do not use comprehensive, accurate testing methods. If you call a local mold inspector and ask them to come assess your property, chances are they will do a visual inspection and take some air samples. Both of these methods can yield useful information, but on their own, they are not enough.

Air sampling does not allow identification of particular species of Penicillium, Aspergillus, Wallemia, etc., which is important because different species have different health effects. In addition, air sampling devices collect only a small sample of air from directly around the device. This matters because mold spores have different molecular weights, and some do not remain airborne for long.

A better method of initially screening a building for mold is the ERMI test. The ERMI test uses mold-specific quantitative polymerase chain reaction (MSQPCR) technology to identify mold in dust that has settled in buildings.

The ERMI test was developed by the EPA as a means of determining the relative “moldiness” of a home compared to a group of reference homes that do not have mold. Thirty-six species were divided into 26 species/clusters of molds associated with water-damaged buildings (Group 1) and 10 common species not associated with water-damaged buildings (Group 2). The mold index is the sum of the logs of Group 1 minus the sum of the logs of Group 2 in a building. The ERMI has been validated in several peer-reviewed studies. (3, 4, 5, 6)

Dr. Shoemaker further refined the relevance of ERMI testing to patients with CIRS by creating the HERTSMI-2 scoring system. This is a weighted score that takes the relative levels and danger of particular mold species into account.

The advantage of the ERMI is that it can identify the exact species of various molds present, and it will identify spores that are not airborne. However, it is crucial to understand that not all labs that perform the ERMI test use the correct methodology.

In order to ensure reliable and accurate results, labs that perform ERMI testing must follow the EPA patent and laboratory procedures exactly. Otherwise, whatever results the test returns will not be validated.

The lab that I recommend for ERMI testing is Mycometrics. It follows the procedures established in the EPA patent by the letter, and it has excellent quality-control procedures in place.

It’s worth noting that no single test—including ERMI—is reliable as a means of assessing whether biotoxins are present in a building. There is no substitute for an experienced mold inspector who uses evidence-based methodology. (I just wish they were easier to find!)

#5: … But Removal from Exposure Isn’t Enough for Most Patients with CIRS

While removal from exposure is an important first step, as I mentioned above, there are at least 10 other steps in the protocol.

People with CIRS have genetic mutations that make them unable to remove the biotoxins that have accumulated in their bodies. This means that getting away from the biotoxins may stop them from building up further, but it will not remove them.

Removal of biotoxins in patients with CIRS usually begins with binders like cholestyramine or colesevelam (brand name: Welchol). Other steps include eradicating biofilm-forming staph colonizations that tend to develop in the nasal passages of patients with CIRS and correcting high/low metallopeptidase 9, antidiuretic hormone/osmolality, C4a, transforming growth factor beta 1, vascular endothelial growth factor, and vasoactive intestinal peptide.

In an ideal world, we’d have CIRS-aware physicians in every city and town who could help patients with this recovery process. Unfortunately, that is not the case. There are currently only a few Dr. Shoemaker-certified practitioners, and perhaps several others who are not certified but are actively treating CIRS.

Working with a Functional Medicine-based care team can also help when you’re dealing with such a complex condition. The California Center for Functional Medicine is a private clinic that offers a virtual, membership-based functional health transformation program that provides you with the tools, team, and support you need to heal from chronic illnesses like CIRS. Find out more about our program.
Mold illness
Cleaning mold off of surfaces where it appears can help prevent mold illness. iStock/yavdat

How to Prevent Exposure to Toxic Mold

Here are steps that you can take to minimize biotoxins in your home and improve indoor air quality: (7)

  • Fix plumbing leaks and other water problems as soon as possible. Dry all items completely.
  • Scrub mold off hard surfaces with detergent and water, and dry completely.
  • Discard absorbent or porous materials, such as ceiling tiles and carpet, if they become moldy. Don’t paint or caulk moldy surfaces.
  • Clean and repair roof gutters regularly.
  • Keep air conditioning drip pans clean and the drain lines unobstructed and flowing properly.
  • Make sure the ground slopes away from the building foundation so that water does not enter or collect around the foundation.
  • Keep indoor humidity between 30 and 50 percent. Relative humidity can be measured with a moisture or humidity meter, a small, inexpensive ($10 to $50) instrument available at many hardware stores. Venting bathrooms, dryers, and other moisture-generating sources to the outside; using air conditioners and dehumidifiers; increasing ventilation; and using exhaust fans when cooking, dishwashing, and cleaning can all help to reduce indoor humidity.
  • Do not install carpeting in areas where perpetual moisture problems may develop (i.e., in a bathroom).

Another helpful intervention is to use air filters and purifiers/sanitizers. Here’s what I use and recommend to my patients:

  1. A high-efficiency particulate air (HEPA) filter that is capable of removing ultrafine particles (less than 0.1 microns) like mold, dust, pet dander, VOCs, and even viruses from the air. These ultrafine particles represent 90 percent of all airborne pollution that you breathe.
  2. An air sanitizer that eliminates allergens, odors, mold, and germs.

The number and range of devices on the market in both of these categories is mind-boggling, and I’ve spent countless hours figuring out the best options for our home. My research is ongoing, but currently, this is what we are using.

IQAir HealthPro Plus

IQAir makes HEPA filters that employ a four-stage filtration process (which includes activated carbon) to filter particles all the way down to 0.003 microns—the smallest particles that exist—with a guaranteed efficacy of more than 99.5 percent. We have one of these in the main living area of our home and one in the basement. Important note: Amazon.com is not an authorized reseller of IQAir, so if you purchase a device from there, the warranty won’t be valid. I recommend purchasing it directly from IQAir or from one of their authorized resellers.

Blueair Sense Filters

Blueair filters use “HEPASilent Technology,” which combines electrostatic and mechanical filtration to capture 99.97 percent of airborne particles down to 0.1 microns in size. We use these in the bedrooms and my home office because they are smaller, quieter, and more energy efficient than the IQAir HealthPro Plus units.

Air Oasis Air Sanitizers

Air Oasis (AO) air sanitizers work differently than HEPA filters. They use a technology developed by NASA called advanced hydration photocatalytic oxidation (AHPCO) to destroy mold, bacteria, and other microorganisms with ultraviolet light and a catalyst. We have a few of the Air Angel units in smaller rooms, as well as an AO3000 in the main living area. Important note: I currently recommend running the AO units only when you are not in the rooms, and turning them off when you enter. This is due to the small amounts of ozone that they release. Though these levels are well below the recommended limit according to AO’s website, I prefer to be cautious. I also recommend using a HEPA/charcoal filter along with the AO devices, rather than using them on their own.

Molekule Air Purifier

Molekule Air purifiers use photoelectrochemical oxidation (PECO) to break down pollutants at the molecular level. PECO works by using free radicals to destroy mold, bacteria, allergens, VOCs, and viruses—without releasing an ozone byproduct. These products are able to reduce concentrations of mold by up to 99.9991 percent. (8)

These devices are not cheap, but given what I’ve come to understand about the importance of indoor air quality to health, and given that my wife, my daughter, and I are all genetically susceptible to CIRS, I think they’re worth the expense. As an added benefit, the air in your home will smell like it does outside! It’s an incredible difference.

I hope this article has helped explain a frequently misunderstood illness. Please share this with those you think may be interested so we can help to spread awareness of this debilitating yet under-recognized condition.

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Join the conversation

  1. Does anyone know a doctor that is experienced in this field ? I been dealing with mold in my old home but still really sick and the doctors I been seeing don’t really know much about mold. If anyone knows a doctor that can give me info please let me know thanks !

  2. I called Labcorp and was told that “HLA DR 1345 DQ Intermediate” in the lavender tube is $600. Is that the right test? I haven’t been able to figure that out on survivingmold.com, and haven’t found anything about the circumstances under which my doctor can code the test so it will be covered by insurance.

    • Yes, it is $600, with an added $25 venipuncture fee. and the lavender tube is correct as well. Hopefully you have an insurance plan which accepts LabCorp, many do. I used ICD-10 codes such as joint pain (M25.5) and chronic fatigue (R53.83), and it was covered. Mild cognitive impairment (G31.84) may work, as can codes related to immune system dysfunction or environmental exposure to mold. Remember that insurances do vary.

  3. Dear, Dr. Shoemaker
    I’m at my wits end and don’t know what to do. I have been suffering for a few years now, have had every test done, even the Aspergillus profile blood test. All are negative. Been to multiple ERs over and over. All will negative results. My story is long and very complicated, but I will describe my situation as brief as I can. About 4 years ago I was living in a double wide that had major roof leaks. Started noticing fungal growth on all my furniture and wall. Seems every surface was covered. Also I had 2 dogs who urinated in the carpet because I worked long hours. I clean everyday and shampooed the carpets 1 time weekly. I Stated having heart symptoms, rapid heart beat, pvcs, chest pain and anxiety. Symptoms started every now then but became more and more frequent. Started having burning in the lungs, numbness in the face, feeling like I can’t breath, dizziness and vertigo. My dogs also became very ill, took them to the vet and they said they had heart problems, put them on bad meds, stopped all that and gave them antibiotic, where they got better. Went to the Er where they found nothing, said it was anxiety! Over and Over. Got so bad I was laying on the carpet in the fetal position in agony. Moved out and in with my mother. I brought a lot of my furniture and all my clothes. Symptoms improved for a few months, the all the symptoms started again, they are now the worse they have ever been. Don’t know what to do. Can’t move, tried using every cleaner, air filtration devices, and even removed the carpet in the room I was staying in and found a lot of Black mold. I fear the mold spore have infected every part of the house. I have been sleeping on the back porch, but there is a large compost pile back there. Been to the Er 25 times in the last year, have been admitted where ever test for the heart was done with negative effects. Causing me to have almost daily panic attacks. My primary has no clue, I told him about mixed mold toxicosis, and he had no idea. I’m now on blood pressure, cholesterol, and anxiety meds, none of which eliminate my symptoms. I am at the breaking point, have bad thoughts not wanting to endure the living hell any longer. All my family think it’s in my head and I’m causing it. They yell at me to STOP! I tell them it’s physical, but everyone says I’m doing this to myself, PLEASE HELP, I don’t know what to do. I called poison control and all state agencies and no one has heard of this illness. I don’t have a lot of money. again PLEASE HELP, thank you so much for reading, I hope you respond soon…..

    • Hi! I have been suffering from mold, so I can relate to an extent. I would recommend getting rid of anything where mold may remain. Not sure about clothing, but definitely porous furniture – anything but metal. It is not worth it. I would also get the highest quality water possible to flush out your system.

    • Fogged my house with mixture of 35% H2O2 plus distilled water and had some immediate relief. Understand. Was just about there too. Jason

  4. Thank you for this. I’ve presented with a few of these symptoms, the most scary of which is the shortness of breath at rest, alongside pain in my chest and discomfort in my abdominal area.

    My GP ordered a chest x-ray, ultrasound and complete blood count to see if i’ve got an infection. Nothing showed up. He told me i’m probably just very stressed out from work when i told him i suspected mold sickness from the mold i detected days before it all started. I have had to shut the room off, and started a course of antibiotics. It’s helped a great deal. There are none of these air quality measurement gadgets where i live.

    And nobody save my friend who is a scientist and works with single-celled organisms was able to corroborate my suspicions.

  5. Chris are you still using these models or have you upgraded any of them to something superior? Many thanks.

    • Drew, what specifically are you criticizing? It’s obvious you’re dismissing some information in the article, but you don’t give any specifics.

      • Sounds like you completely misunderstood my comment Brian. I am not dismissing or criticizing anything at all in the article. As the article was written almost 2 years ago I was asking Chris if he was still currently using these same models or if since writing, he had possibly considered some others since then. Sorry for any confusion caused. Have a great day!

  6. What is your take on the ‘walk away from all your possessions’ question? Mold was found in our crawlspace and in one bathroom. We’re waiting on the report for how bad it is. Most of the mold info seems to say that even with remediation your possesions can’t really be decontaminated.

    • Hi Karen……google “paradigm change me, what do I do with my stuff”. This is a very good artical that explains what you should throw out and WHY in detail. I have found it to be very helpful. This isn’t an easy thing to do…dealing with all the loose we all have to deal with but if we want to get better we have to make hard decisions.

      • Donna, you can add a link to a comment here (so there’s no need to ever ask anyone to “Google” something that you know where it is). The only Google result for your quoted phrase was this article, because it appears in your comment. Here’s the article:

        The article is very interesting and informative. I see that it is for the less-hardcore people, there’s no mention of sanitizing appliances by taking them apart and washing every part (which I do every summer with my dehumidifier, and I’ve done with toaster ovens/food processors/ovens/etc.) or restoring books by storing them for several months with baking soda or activated charcoal.

        • Your report of restoring books by storing them for several months in baking soda and/or activated charcoal is very interesting . I read elsewhere that charcoal filters in an air purifier can remove mold mycotoxins . If books can be restored in that way , then perhaps clothes and shoes with no visible mould could also be restored . Are you referring to stachy , black aspergillus mold mycotoxins , or less harmful ones ? Were your books exposed to stachy ? Where did you dreive your info from about this method ? I have a black mould problem in a 1 1/2 mete area of one wall , not in the bedroom , but as I am on a pension , with few assets , and neither my clothes nor my shoes smell of mold , and I realise I will need to ditch my mattress , bed , furnishings , cushions , washing machine , portable air conditioner , two air purifiers , and blender , juicer , stereo , computer , radio , etc., I am loathe to also ditch all my apparel and bags , bedding , blankets , etc . I am aware of the washing protocol of washing 3 times with borax, vinegar and epsom salts, each separately , and the storage solution would be an extra remedial measure . Any info would be appreciated , also any ways that the machines with motors could possibly be saved .

          • Hi Patricia. I don’t know whether I tried the baking soda method based on just knowledge of baking soda, or having read someplace about its use for reducing mold odors. I have been participating in online discussion groups such as the GreenCanary email list on Yahoo! Groups for a long time. This method (storing books with baking soda) would be useless with live mold. Mold spores give off toxic chemicals that are by-products of their digestion, and these chemicals can inundate any material that is in the environment. Some items, such as a glass table, would be easily cleaned or would soon off-gas the chemicals once the live mold has been removed, but things such as books can absorb a lot of them and they remain for a long time. I did have a lot of success storing moldy-smelling things in a room with an air purifier (an Austin Air that has a lot of carbon in the filter). Books do not clean well this way though unless they are propped so that the pages are open slightly. I had some things that just could not be saved, for instance an antique storage trunk that visible mold colonies were infesting the interior paper lining. Other things such as clock radio/kitchen appliances/etc. I disassembled and cleaned as many parts as I could, leaving parts out in sunlight. That seemed to eradicate the mold odors in most cases, it’s a lot of work though! It’s difficult to sum up the methods for cleaning mold toxins from things. Various things need various methods. The acidity of vinegar can be useful for things that can tolerate it, I have used a spray bottle with diluted vinegar on box fans and other sturdy types of appliances that can be washed. Things that can’t be washed with water, often storing with baking soda or activated charcoal is the best thing. It seems like you have a good awareness about detoxing laundry. I find hanging things out in sunlight, if they’re fabric or something that do not have hidden areas like an appliance does, cleans them faster and easier than anything else. I was soaking some clothing items in changes of dishsoapy or detergent water for many weeks, they still reeked of mold, then I hung them outside for a few days and the mold smells vanished.

    • Hi – sorry you’re having to deal with this. I recently moved out of the house that made me sick, and took all my possessions with me because … well, because it didn’t occur to me not to. Then I did my research after the fact. I think there are several important, individual factors that affect the decision about what to keep or throw away.

      1. Consider your level of sensitivity and illness. If you’re bedridden and the slightest pro-inflammatory trigger affects you, it’s a good idea, in an abundance of caution, to get rid of almost everything. I was not/am not that ill, so I am willing to accept a higher level of potential risk.

      2. Soft furnishings are problematic. After I moved and felt significantly better – though I’ve still got a long way to go – I recognized that I still felt sedated/off/lethargic when I sat on a particular sofa and on the two chairs in my living room. That was tough, because they were really good pieces of leather furniture that I’d bought in the last couple of years as real “adult” furniture. I thought leather might be more impervious than fabric, but moisture & mold spores can still get in. So, I got rid of soft furnishings and bought new sofa & chairs.

      3. Consider where your mold problem was, and which possessions were affected. If mold was throughout your house, or in your duct work, then likely everything in your house could have been exposed. In my house, the problem was in a sun room and two AC units on the first floor. But the spaces and possessions on the second floor did not seem to be affected.

      4. IMO, books, magazines, and newspapers are very susceptible to mold and decay even w/o a house having a mold problem. A sensitive person prob shouldn’t keep mags & newspapers around their house in any event. I love by books; I keep them in enclosed bookcases with glass doors.

      5. Carpets & curtains are often culprits, and likely good to eliminate anyway, as they are reservoirs for dust and other allergens, which can add to total inflammatory load.

      Wishing you luck. I appreciate the community on these boards, but it’s not one anyone really wants to enter; and I hope one day all of us can leave.

  7. I’ve been searching doggedly for more information about HLA haplotypes, cholestyramine treatment, and other aspects of treating mold illness mentioned here. Most of the information about these topics comes from Shoemaker. While he’s undoubtedly very smart and appears to have helped many people, he also has a reputation for lack of scientific rigor. I have very limited resources to follow up testing/treatment ideas. There’s no doubt that I have mold illness: I have experienced quite a bit of health trouble since being exposed to mold in a water-damaged apartment and certain detox measures seem to help a lot. Where might I find scientific data, preferably peer-reviewed or at least duplicated or showing all the study details, about these topics? Help!

  8. I had a portable humidifier in bedroom and filter molded. I did not know and still ran it for a few months. Meanwhile ended up so sick sinusitis bronchitis pneumonia asthma numb arms hands insomnia joint pain and swollen face and hands. I thre out the unit which was on dresser blowing right at me at night. Once I did that I began to get better. Could there be any air born issues? Our house is only 10 yrs old and we built it so i know its never had water damage, but I just dont know it its like on all my stuff or what.

  9. I once lived in a mold infested dwelling for 6 years. Was having different symptoms, headaches, skin rashes, overall fatigue. Moved after becoming convinced the mold problem in bldg was real and was impacting my health. Gradually over some years I began to have rashes and itching in upper body which became more severe and torturous, especially at night with sweating and overheating. Rashes and redness were and are present. My doc finally did blood tests and saw that my red cell count was proliferating, causing high hematocrit and found to have histamine reaction. Was directed to a hematologist at hospital who did many tests over months leading to a potential dx of Polycythemia, not Vera(PV) but secondary polycythemia. Docs have no answers but I must have phlebotomies every couple of months to get my blood hematocrit lowered. I need to know where this is coming from and am not finding any answers related to blood and mold specifically. PV is rare but 95 % of patients have a mutant gene, found after having a bone marrow biopsy. I don’t have this so I’m in 5% that is unknown, after eliminating some possible causes through testing. I need to know how this scenario could play into a mold problem that could
    still be causing havoc in my body and need to know specifically about blood disease caused by an overproduction of histamine, relating to abnormal red blood cell growth in the marrow. I hope I can get some answers.

    • Suzy dated March 7th……this is very interesting. I have mold illness and was finally diagnosed last yr Feb 2016 and i am HLA-DR positive, CIRS, Hashimoto’s disease, hypothyroid, anemic, leaky gut, systemic yeast and still living in this house with many molds including THE black mold stachybotris chartrum. My sister lives in MD and is a nurse as well as myself. She was diagnosed with PV about 3yrs ago and they were just watching it and then about a yr ago her platelets were 3x’s the high level and they were talking about starting blood letting and oral chemo. Then they re tested her and said she does NOT have PV…..but they dont know whats going on. He herself had started taking a baby aspirin to thin here blood understanding the risk for blood clots and heart attacks but she still has no answers and is just living with it. She has not been to my house since i had the mold in july 2012 when a pipe burst and a minor leak happened and the co that was sent out by insurance did not take down the small area of wall or the little bit of wall to wall carpet in the finished basement and i started with all these symptoms. She said she has not had mold in here house except in her bathroom a little and WE know that is all it might take to make a susceptible person sick but she dosent want to have the HLA-DR test and i dont think she believes me about how sick i am or how serious this whole subject is. Please post any info you might come across bc id like to pass it on to her. If i here anything i will do the same. I am going to try to print this out and send it to her bc there might be a link. Thanks! Donna Z.

      • Look into joining some mold groups for more info, like surviving mold and mold avoiders,

  10. Great article – very helpful! One thing about the HLA’s that continues to confuse me is the groupings (multi-susceptible, mold, chronic lyme, etc.) For ex. if you have a mold specific haplotype like 17-2-52A does that mean that you are ONLY susceptible to mold? And not other biotoxins like lyme and dinoflagellates? Or if you have a lyme specific HLA like 15-6-51, are you only susceptible to Lyme and not to mold?

      • I am not an expert but my understanding is that once MSH becomes low you are susceptible to everything (mold, lyme etc) regardless of HLA genetics. So in other words exposure to one type of biotoxin can lower MSH such that you become susceptible to other types. You should definitely consult a doc that specializes in biotoxin illness to get a definite answer.

        • Thanks Peter for that input, yeah I’m just interested and should have a better answer from my doctor in a couple of weeks.

          4-3-53: susceptible to both biotoxins from mold and Lyme

          11/12-3-52B: susceptible to both biotoxins from mold and Lyme

          14-5-52B: susceptible to both biotoxins from mold and Lyme

          7-2-53: susceptible to biotoxins from mold

          13-6-52A, B, or C: susceptible to biotoxins from mold

          17-2-52A: susceptible to biotoxins from mold

          18-4-52A: susceptible to biotoxins from mold

          **15-6-51: susceptible to biotoxins from Lyme**

          16-5-51: susceptible to biotoxins from Lyme

          Does **mean that once you are treated** and do not have Lyme and away from mold, then you shouldn’t be as sensitive to it?

          • It is possible to reduce your sensitivity with treatment, yes. I suggest you read up on Shoemaker’s work. The VIP spray can help with this. Also mold avoidance is important, eventually you will probably be able to recognize bad environments. It’s hard to raise MSH though.

  11. Some here may find benefit from reading the “101” document on Dr Shoemaker’s protocol:

    Dr Shoemaker has reviewed the document.

  12. The article was very helpful and informative. I was exposed to toxic mold in workplace. I have severe childhood/adulthood allergies to penicillin and mold spore antibiotics that almost killed me as a child. They moved us to a musty mold infested building and i took ill immediately as did others but not to my extreme of passing out, flu like symptoms. The first complete test on bldg revealed mold but after bleach bombing they retested the air in one area of building and cleared the bldg to be reopened. Meanwhile, people are still working in that building and and getting ill with headaches and clients are still being seen even after i reported bldg to proper authorities. I have been diagnosed with lupus, fibromyalgia, arthropathy, as well as newly diagnosed asthma. I suffer from extreme joint and muscle pain my ANA and blood panels are extremely high for inflamation. I no longer work there but the damage is done to my health.

  13. Hi, I lived in orange county and Black toxic mold destroyed my entire life. Even till this day. I only live in the house with major black toxic mold(which all looked perfect because there was new carpet, new everything. But it has brought my life down. and nobody has any clue the amount of money it will take to combat this problem for the rest of my life. I need help. I’m facing the landlord soon in court. n I can not have kids due to this, I lost everything i own. I am also disabled. what do I do???

    • hi, my name is Liesle I’m having the same problem. I’m trying to get my case together bc I’m going to see the owner in court.I wish you the best. My biggest problem was I was disabled before this. and all the mold doctors don’t take insurance. wheat do I do, I don’t have the money for this. Its a silent killer. Because not enough people know enough about it. Good luck to you, N I’ll be praying for you and everyone!!!

    • If you don’t have money to see a doctor that specialize in mold treatment (such as a Shoemaker certified doctor) I would recommend pursuing Mold Avoidance. Check out the web site http://paradigmchange.me as well as the Facebook group Mold Avoiders. Lots of good free information on how you can get better.

    • Liesle please go to survivingmold.com and look at the physician list. Start with Dr. Ackerly she can do a phone consult. You will need a local doctor to order blood labs. You cant be treated unless you are in a safe environment. Leave your stuff and get somewhere safe so you can start to heal.

      • My name is Emma. I lived in a place that had black toxic mold. And I’m trying to get proof it is still in my system bc I still feel sick. But I can’t find any doctor that will take my insurance bc I can’t afford to pay cash. I’m disabled. PLEASE HELP