Are You Moldy?

Updated on April 16, 2016

Take Mold Seriously

I’ve been meaning to write this post for a while – years really. Ever since I started studying the work of Dr. Ritchie Shoemaker, one point became crystal clear. If you’ve got a chronic illness (Lyme, CFS, Fibromyalgia, MS, and so on), it’s an absolute imperative that you take the time to figure out if you’re one of the 24% of the population that has a genetic weakness to toxins from mold, Lyme, certain reef fish, and a few other organisms that produce nasty “biotoxins”. If you have weak genes, you then need to determine whether or not this genetic weakness is being expressed – that your body no longer can clear biotoxins and they’re consequently making you really sick. I can’t say this strongly enough. For the time being, set aside all the other diagnoses and theories out there about why you’re sick and take the time to read this post and make a preliminary determination as to whether biotoxins are contributing to your illness. Take care of the biotoxin-factor first.

Note: When I wrote this blog I was focused on making the point about mold biotoxins. However, it doesn’t matter if the source of the biotoxins is mold, Lyme, blue-green algae, or otherwise. It’s all the same in regard to making a preliminary diagnosis and getting started down the path of lasting wellness. In other words, whenever I’m talking about mold toxins, this also means toxins from Lyme, some reef fish, and so on.

Are You Moldy? – Article Outline

  1. Why Mold Should Come First
    1. Biotoxin Illness Test
    2. Visual VCS Test
    3. HLA DR Gene Test
    4. C4a Inflammatory Marker
  2. Diagnosing Biotoxin Illness Using Labwork
  3. Mold Toxin Symptoms Are Numerous and Diverse
  4. Initial Treatment Steps and Avoiding Mold Toxins

In discussing Why Mold Should Come First, I make the case that the method of diagnosis and treatment of Biotoxin Illness (sick from mold) are very exact and have an excellent chance of improving your health. In looking at the number and diversity of Mold Toxin Symptoms that overlap other chronic health conditions, it just makes good sense to address mold first and then take on any remaining health issues after. To determine if you’re “moldy” we begin by looking at symptoms using the Biotoxin Illness Test that will give you a very good idea of how “moldy” your symptoms are. The Visual VCS test is another interesting and somewhat useful diagnostic tool. If the Biotoxin Illness Test isn’t convincing enough, you can get an HLA DR gene test to determine if you have a genetic predisposition to Biotoxin Illness. If being symptomatic and having a gene susceptibility still isn’t convincing enough for you, the C4a test will show if you’re body is inflamed.

In essence, I wrote this blog because so many people I run into that almost certainly are “moldy” live in a state of denial. There are a lot of reasons for this. For example, what if the home is moldy? This will mean at a minimum expensive remediation. What about lack of health insurance coverage? Also, in my experience, moldy people just don’t think straight. Personally, I believe the mold sort of takes over and induces a physiological response that says “Oh no, it’s not mold. Leave us alone!” So I wrote this blog so people that are unsure about the whole mold factor have a straight-forward way of evaluating if mold is impacting their health.

Why Mold Should Come First

Am I Moldy?

To see why looking at mold is so important and why this should be one of the first steps in treating all chronic illnesses, we need to begin by looking at the work of Dr. Ritchie Shoemaker. When you do, you realize that if Dr. Shoemaker is anything, it’s rigorous. He has meticulously documented and correlated diagnosis and treatment protocols on the over 8,000 patients he worked with in his practice. I and my brother were two of them. If you talk to him or listen to his lectures, he never deviates from his rigorous standards. He never lets “his hair down”. He never says or does anything that isn’t according to a step-by-step, one variable at a time, scientific methodology.

At first glance, this approach can appear confounding to some but it is at the same time why you can rely on his diagnostic and treatment protocols in a way that other theories and protocols cannot afford. Unlike many alternative medicine approaches that rely on untestable theories involving the complex interaction of a multitude of variables, Dr. Shoemaker’s approach works like a cookbook. Essentially, he took a whole bunch of potential diagnostic and treatment solutions and tested them one at a time, recorded the data, and then looked to see if any of them were statistically significant. The diagnostic tools and treatments that worked went into his protocol and everything else got tossed out. Sure, maybe some complex, potentially beneficial combination of variables got overlooked, but what was kept is a rock-solid core to work from. The very real difference between his work and so many others in the alternative medicine scene is the rigor in which he gathered and analyzed data. As a result, what you have is a recipe for determining with very high probability if you’re suffering from Biotoxin Illness along with a protocol with a very good chance of getting you significantly better.

To put it in another light, Dr. Shoemaker is not at all like Lyme guru, Dr. Klinghart, who looks at EMF, dental issues, heavy metal poisoning, Lyme, parasites, mold, and so on all at once as he develops individualized treatment protocols for each patient. Instead, Dr. Shoemaker intentionally plays dumb. He does this because he knows that a Klinghart approach can’t be readily duplicated or scientifically proven. He knows that any information coming from a Dr. Klinghart type of approach will be ripped to shreds by the conventional medical establishment and consequently leave those of us that suffer from Biotoxin Illness forever banished from ever getting medical treatment that insurance will cover – most alternative medicine practitioners are “pay as you play”. You get the very real sense that he doesn’t like being wrong and delights in making folks like defense attorney’s working against mold cases look bad when they try to discredit him. He’s taken the scientific method that is all too often manipulated by the pharmaceutical and medical community to push bad medicine on you and I, and used it establish a platform from which we can strongly make our case against the status quo that Biotoxin Illness is real and that those that suffer from mold illness deserve to be respected and cared for.

Don’t get me wrong, there certainly is validity to a multi-variable treatment protocol, it’s just that I don’t know how we’ll ever be able to make a case for better treatment (or should I say any treatment) without the rigor of a Dr. Shoemaker. I don’t think some people get that about him. I think they lump his body of work together with the bulk of other chronic illness theories out there and in my humble estimation, this is a big mistake. Dr. Shoemaker’s work is not just another theory that requires a lot of tweaking with questionable outcomes. It’s a rigorously proven, standardized diagnostic and treatment protocol.

Now if you’ve done some research, I’m sure you’ve run across some cases that didn’t advance beyond a certain stage of wellness on Shoemaker’s protocol. I know I’ve certainly heard various accounts about how his approach doesn’t always work. I’m sure that’s the case but then I often wonder if folks that only realized limited benefit really followed the protocol exactly? It has a lot of details that require real diligence to master. Certainly there must be some that didn’t benefit as much as expected, (I never got past treating MARCoNS with him because my home’s ERMI mold test was too high – more about this in another post) but knowing what I do about the alternative medical community, I’m guessing many that didn’t see benefit may not have stuck to the recipe somewhere along the way.

At a minimum, even if you’re not sure if Dr. Shoemaker’s protocol will get you better, by using some of his diagnostic protocol you can get a very good sense if you’ve got Biotoxin Illness and how badly it’s beating you up. It’s not like the three different Lyme tests I had done; each coming back with a different set of positive bands – as if my body got exposed, developed antibodies, and then forgot that it developed antibodies. Yeah, right. A lot of alternative medicine is this way – lots of good theories with many success stories but really hard to know if a diagnosis is accurate let alone if a treatment approach will work. It’ll continue to be this way until the alternative medicine community figures out a way to gather data cooperatively in a scientifically valid way.

That’s not what you get when you use Dr. Shoemaker’s method to find out about mold. You get very close to a sure thing. You’ll know with near certainty if you’re being made sick by mold toxins and have a protocol that has a damn good chance of making real headway in getting you better. So maybe you do have dental infections, Lyme and a couple of co-infections, heavy metal poisoning, parasites, and so on. Maybe you’re taking enough Mepron to revive the dead, have done over forty 1-hour HBOT sessions, FIR saunas until you looked like a shriveled grape, and some really far out treatments that puts you firmly in the top 5% of the most die-hard alternative medicine folks right along side with me. However, take it from someone that’s treated the gamut of chronic illness suspects with a total commitment that only someone driven by extreme, unrelenting inflammatory based borderline psychosis and anxiety can know, go after the mold first. I’ll say it again. It’s pretty easy to figure out if mold is a problem for you, and if it is, then there are very real steps you can take that will make you feel a whole lot better.

Address the mold factor first and see what’ left when mold is out of the equation.

Biotoxin Illness Test

Aspergillus-Pennicillium Fruiting Head

OK, so I’m finally to the place where I can talk about how straight forward it is to diagnose mold illness. Now if you’ve listened to Dr. Shoemaker, you’re probably thinking I’m nuts; diagnosis must be really complicated and most assuredly must include having about twenty vials of blood drawn like I did when I saw Shoemaker. Nope; far from it.

When I was really sick, I spent weeks taking notes while pouring over Dr. Shoemaker’s books and DVDs. Over time, I realized even though it’s important for treatment, not all those tests Dr. Shoemaker talks about are needed when it comes to making a preliminary diagnosis. In fact, in the DVDs Dr. Shoemaker briefly mentions a list of symptoms that can be used as a diagnostic tool. More specifically, out of the multitude of symptoms associated with Biotoxin Illness, he found that a specific sub-group of 35 of symptoms could be used to make an accurate preliminary diagnosis of Biotoxin Illness without anything else!

So, do you want to know how to tell if mold is messing with you? Look at symptoms. Later, you can do a simple gene and inflammatory test to give you an even higher degree of certainty. In my book, it’s that simple. Now I know that lab work like TGF-beta 1, C4-a, C3-a, VEGF, MMP9, Osmolality, ADH, anti-Gliadian antibodies, Leptin, MARCoNS, VFW, hormones, and so on are all important but they’re primarily for developing a treatment protocol. You don’t need them when it comes to making a preliminary diagnosis.

Dr. Shoemaker – Identifying Biotoxin Illness Using Logistic Regression Methods.

The algorithm for this test developed by Dr. Ritchie Shoemaker is presented in his DVDs Physician’s Approach to Biotoxin Illness. It’s been built into the Biotoxin Test. Briefly, the test is scored using 35 symptoms. These 35 symptoms are grouped into 13 “clusters” with anywhere from 1 to 5 symptoms in each cluster. If a person answers yes to one or more of the symptoms in a cluster, that cluster is counted. If the total number of clusters counted is 8 or more, then there is a very high probability that the person has Biotoxin Illness. When 6 clusters are counted, there is a very good chance of having Biotoxin Illness, and even when only 4 clusters are counted, there is still statistical significance. The one qualifier is that the test needs to be administered in an unbiased and clinical manner. Note: Upon completion of the Biotoxin Test, you’ll be shown the 35 symptoms and the 13 clusters 😉


Biotoxin Online Test

Click Here For
Online Biotoxin Test

Visual VCS Test

VCS Test

The Visual Contrast Sensitivity (VCS) test is another way to slightly increase the accuracy of self-diagnosing Biotoxin Illness. The eye test measures a person’s ability to distinguish light from dark – detect an “edge”. As it turns out, Biotoxins lower the available oxygen due to reduced blood flow to the optic nerves. According to Dr. Shoemaker, 92% of the time folks with Biotoxin Illness will fail the VCS test. Lower oxygen to the eyes may also reduce night vision and increased light sensitivity.

Looking at VCS alone, if you fail the visual test then this is a reasonable indicator that you may have Biotoxin Illnesss. However, Lyme disease, mercury, lead, pesticides, petrochemicals, hydrocarbons, and aromatic solvents, such as toluene, xylene and benzene also impair VCS scores so passing it is actually more telling than failing the test. If you pass the test, then there is only an 8% chance that you have Biotoxin Illness. According to Dr. Shoemaker, in combination with the results of the Biotoxin Test administered by a physician, if someone has symptoms in 8 out of 13 clusters and fails the VCS test, then there is a 99% chance they’ve got Biotoxin Illness.

The VCS test is a special type of visual test designed to measure a person’s ability to see shades of gray. In other words, a person may have 20/20 vision and yet fail the VCS test miserably. In general, the more tightly spaced the lines are on the VCS test, the harder it is for moldy people to distinguish edges.

To begin the test, a card with the typical visual acuity test is placed at 16 inches into a hand-held ruler that the person holds up to their chin. The person must be able to see the 20/50 line on the visual acuity card before being qualified to take the VCS test. Reading glasses are allowed. Technically, a light meter should also be used to ensure at least 70 foot-lamberts of lighting.

Once the tester has confirmed that the patient meets the minimum visual acuity requirement and the light is right, the VCS card is placed at 18” on the holder. To pass the VCS test, the person must be able to see to row 7 in column C and row 6 in column D. Columns A and B detect nutritional deficiencies. Column E may be used to monitor improvement in treating Biotoxin Illness. If even one eye doesn’t meet the above criteria, the person fails the test. Note: If a person has one bad eye or wears a far-vision contact in one eye, then the test may be administered to the good eye only and the test is still just as reliable.

VCS Factoids

  1. Passing is seeing to row 7 in column C and row 6 in column D
  2. 92% of those with Biotoxin Illness will fail the VCS test
  3. Columns A and B detect nutritional deficiencies
  4. Column E is used to monitor improvement
  5. Most will see improvement in VCS one week after starting Cholestyramine (CSM)
  6. MARCoNS can prevent improvement in VCS
  7. Per Dr. Shoemaker, you must pass VCS before taking VIP
  8. Taking CSM when Lyme is present, people get sick and VCS drops in columns D and column E
  9. Improvements in VCS are a positive sign that alternative binders are working – though CSM and Whelcol are preferred

VCS Near Card

VCS Card

VCS Test Demonstration
Dr. Shoemaker VCS FAQ

Here are links to three online VCS tests. Unless you’re totally broke, I strongly encourage you to spend the $15 and support Dr. Shoemaker and his work. If you’re cash poor, I’ve included two links to free online tests.

Surviving Mold VCS Test ($15 – support Dr. Shoemaker)
Online CST Vision Screener (free)
Visual Contrast Sensitivity Test (free)

Now that I’ve explained the test, I have to say that I haven’t been all that impressed with it. I’ve done numerous online tests and also own a VCS APTitude Handheld Kit that I purchased on SurvivingMold.com. Prior to going to see Dr. Shoemaker, I was able to pass the online test no problem. However, in Dr. Shoemaker’s office, I forgot to bring my reading glasses. I took the test in his somewhat dimly lit office. He flicked on a special light below which I held the test cards. I was able to see the 20/50 visual acuity line without my reading glasses but I’ll be darned if I could come even close to passing the VCS test.

VCS APTitude Handheld Kit

Similarly, I’ve also seen folks that are clearly moldy based upon symptoms pass the test. Maybe they were just one of that 8%. Still, my feeling is that the better the lighting and stronger the reading glasses, the better your chances of passing the test. Even Dr. Shoemaker has commented that moldy people with exceptional vision usually pass the test much more often – tennis players, artists, designers, etc. Likewise, the accuracy of the online test depends on a monitor with good screen resolution, contrast, color hues, and so on but is still worth taking.

My take away is that if you fail the VCS test, then it adds one more percent to your Biotoxin Test score. However, if you pass the test, this by no means negates a miserably failed Biotoxin Test. For the most part, I personally think VCS is better used to monitor the success of a treatment program than it is for diagnosis but I know Dr. Shoemaker would likely disagree.

HLA DR Gene Test

HLA DR Gene Test

I just want to remind you that the use of the Biotoxin Test, the VCS test, and the following two lab tests should only be used for a preliminary diagnosis. Dr. Shoemaker makes it clear that physicians certified in his protocols need to run a battery of blood tests before making any diagnosis. However, from what I’ve studied and experienced, I see no reason why folks that are sitting on the fence, don’t have insurance, or can’t afford to travel to see one of a handful of qualified physicians, can’t use these simple tests to make a substantially accurate diagnosis either on their own or with the support of a understanding Doctor and then take it from there.

So let’s look at a couple of blood tests that will solidify the findings from the Biotoxin Test and VCS test. The first is a gene test called HLA-DR. If you read Dr. Shoemaker’s books, he describes the underlying cause for Biotoxin Illness as resulting from a failure of a part of the immune system called the acquired immune system to create antibodies designed to remove mold toxins from the body. Normally, the body is still able to clear these types of pathogens using a backup method that is part of the more rudimentary innate immune system. In this system, the liver pulls the mold toxins out of the blood and correctly dumps them into the colon via bile from the gallbladder so they can be excreted. Unfortunately, mold toxins are reabsorbed by a recycling process in the body called enterohepatic circulation that serves to reuse bile and bilirubin. Consequently, the mold toxins (mycotoxins) are never eliminated and end up back in the bloodstream. Over time, mold toxins trapped in the body build up and cause massive and numerous inflammatory based health conditions.

Dr. Dave Ou – The Genetics of CIRS From Biotoxins

As an aside, often people confuse mold allergies with Biotoxin Illness. As you can see, the two are completely different. Remove someone with a mold allergy from the source, and the person gets better. Remove someone with Biotoxin Illness and they will not get better without treatment (unless you practice Extreme Mold Avoidance as outlined by Erik Johnson and Lisa Petrison). Furthermore, unlike a mold allergy, even small exposures can have devastating and lasting health effects for the Biotoxin susceptible person as the immune system gets fired up and never shuts down causing all kinds of havoc.

The HLA-DR gene test is a simple, one-vial blood test. I like it in comparison to other mold blood tests because the sample doesn’t require any spinning, separating, freezing, overnight shipping, and so on. Fill a lavender top (contains the strong anticoagulant EDTA) at room temperature and ship it off. Having said this, it’s essential that the correct test and lab be used. You want to use the same lab and test that Dr. Shoemaker used on his 8,000 plus patients so you can compare your results against his database. Any physician can write the script (even Psychiatrists). However, you may need to do a little legwork to figure out where the nearest Lab Corp center is and make an appointment as you don’t want to use your local lab – unless it’s Lap Corp. For confirmation of the details below, please see the most recent Physician’s Order Sheet from SurvivingMold.com.

When you talk with your Physician, make your case short and precise. Biotoxins…specialist Dr. Shoemaker methodology…simple blood test. Make sure to let him or her know that you will take care of the details about getting the draw from Lab Corp. Also, make sure to mention that he or she won’t have to interpret the results and you will not be looking to them for treatment – you’ll go to a specialist if it turns out you are susceptible. All they need is the semblance of a good reason and assurances that it won’t require any extra work or risk on their part. If they actually want to learn more, refer them to Dr. Shoemaker’s website but don’t jabber on and potentially sabotage your efforts – keep your “game face” on at all times.

Lab Corp Locations

HLA-DR Gene Test Information

  • Name of test: HLA DR by PCR
  • Name of lab to use: Lab Corp (must use Lab Corp)
  • Type of vial to draw blood into: Lavender top
  • Other: keep specimen at room temp
  • Lab Corp test code: 167120 Note: must use this test code (old code was 012542)
  • Diagnostic codes for insurance – Patient dependent
    • 279.10 (immunodeficiency with predominant T-cell defect)
    • 279.8 (other specified disorders involving the immune mechanism)
    • 377.34 (toxic optic neuropathy – when patient fails VCS testing)

HLA-DR Rosetta Stone for Interpreting HLA DR Reports

The only cumbersome part about this gene test is interpreting the results. Unfortunately, Lab Corp has changed the way they report the results so you need to change the new way of reporting into the one that was used when Dr. Shoemaker first started collecting data. Essentially, what you want to end up with is two sets of numbers and letters – your two “haplotypes” – one from Mom and one from Dad. You then look at the list of haplotypes that Dr. Shoemaker found made people susceptible to mold toxins, fish toxins, Lyme toxins, and so on and see if you’ve got one – you only need one of the two to be “bad” for you to be susceptible. If you do and you failed the Biotoxin Test, this is like saying that you have the genes that make it possible to get really sick from mold toxins and you’re showing all the symptoms indicating that your body has stopped being able to clear mold toxins from your body – you are “moldy”. Note: See my blog “Deciphering HLA DR Labs” for a simpler way of interpreting test results.

Getting into specifics, on the lab report there are five categories of results. They are labeled DBR1, HLA DQ, DRB3, DRB4, and DRB5. Your job is to take the first number listed after each of these category labels (if there is one as some will be blank) and translate them into two groupings called “haplotypes” consisting of either two or three sets of numbers and letters (two or three sets of “alleles”). Take a look at the examples below to see how to find these numbers from a report and then read over how to convert them below.

HLA DR Homozygous   HLA DR Heterozygous

First, it’s important to know that you usually end up with two groupings/haplotypes that contain three sets of numbers and letters, but sometimes you may only get two sets of numbers and letters for a particular haplotype. Specifically, you know you will get two sets of three alleles unless DRB1 is 1, 8, or 10. In the cases where DRB1 is 1, 8, or 10 then HLA DQ will be present but there will be nothing listed in the DRB 3, 4, or 5 categories. Everyone besides those with a DRB1 or 1, 8, or 10 will have an HLA DQ and one other allele from DRB 3, 4, or 5. In other words, you will end up with two sets of three numbers-letters unless DBR1 is 1, 8, or 10. In those cases, you’ll end up with a set of two numbers.

Second, it’s important to know that if there is only one entry for DBR1, HLA DQ, or DBR3, then both genes have the same allele – you’ve got a pair of that allele. When this happens, the allele is called “homozygous” for that particular category. Also, it doesn’t matter what’s listed after categories DBR4, and DBR5. If there is a number there, convert it using the rules below.

Third, it is up to you to combine the translated numbers-letters listed in each category into one of the known haplotypes using the list below. For example, if DRB1 is listed as 11 and 7, while DQ is listed as 2 and 3, then it is up to the you to realized since there is no 11-2-X haplotype, then what you’re looking at are 7-2-X and 11-3-X haplotypes – you’ll need the complete list of 54 haplotypes from “Surviving Mold” to use this method. Otherwise, just try to see if you can combine the alleles wherein you end up with one or two of the susceptible haplotypes listed below – as they are a subset of the complete list of 54 haplotypes. Once you’ve made the conversion, realize that only one gene need be susceptible for the patient to be susceptible. Note: From my understanding, you don’t need to worry that if you’re able to combine alleles into only one of the susceptible haplotypes below that maybe there are other combinations you’re missing because you don’t have the complete list of 54 wherein you may end up with no susceptible combinations.

  • You only use the first two numbers from each category line of the report.
  • If there is only one entry, instead of two, the patient is homozygous – has two of that allele.
  • The first two numbers for each category are translated as follows:
    • For DRB1, if the first two numbers are 03, rewrite it as 17. Otherwise, leave as is.
    • HLA DQ = HLA DQ (no translating required for this category)
    • When present, DRB3 = 52A for 01, DBR3 = 52B for 02, and DBR3 = 52C for 03
    • When present, DRB4 = 53 regardless of what the first two numbers are
    • When present, DRB5 = 51 regardless of what the first two numbers are

Susceptible HLA DR Haplotypes

  • Multiple Susceptibility (dreaded): 11-3-52B, 12-3-52B, 4-3-53, 14-5-52B
  • Mold: 7-2-53, 7-3-53, 13-6-52A, 13-6-52B, 13-6-52C, 17-2-52A, 18-4-52A
  • Chronic Lyme: 15-6-51, 16-5-51
  • Dinoflagellates (fish): 4-7-53, 4-8-53
  • MARCoNS: 11-7-52B
  • Low MSH: 1-5
  • MS: 15-6-51
  • Chronic Fatigue: 4-3-53, 11-3-52B
  • Chronic Fatigue from Lyme vaccine Lymerix: 4-3-53 (Subtypes 0401, 0402, and 0404 for DRB1 are worst.)
  • Gardasil Vaccine for cervical cancers should be avoided: 11-3-52B
  • Low Mold Risk: 7-9-83, 9-9-53, 12-7-52B
  • Benign – all haplotypes not mentioned
  • Note: In his book “Surviving Mold“, Dr. Shoemaker listed 1-5 as low MSH. However, it is not listed on the Surviving Mold Website. This does not mean that 1-5 doesn’t have significance. In his FAQ’s, Dr. Shoemaker says, “In assessment of the DRB-1 1-5 over the years (together with its related haplotypes of 10-5 and 103-5, and 1-3 and 1-4) the only variable that reaches statistical significance we have seen is a reduced level of MSH in cases compared to other cases and then to controls.”
  • Note: Up to 5% with a Benign haplotype may still get CIRS from mold but will recovery more easily. There are a total of 54 known haplotypes – see page 716 in the book “Surviving Mold”. Alternatively, upon completion of the Biotoxin Test, you’ll be shown the 54 haplotypes 😉
  • Dr. Shoemaker’s HLA DR Chart

Surviving Mold by Dr. Ritchie Shoemaker

C4a Inflammatory Marker

C4a Blood Test

The last test I want to talk about is the C4a blood test that measures inflammation. When C4a is high, it means your immune system is in overdrive. More specifically, when complement component of the immune system are activated, the C3 and C4 proteins are split into “a” and “b” parts. The “b” part binds to the toxins or bacteria in order to facilitate their removal. The “a” part remains soluble in the blood and is measured using the C4a test. As such, when C4a is high, this means your immune system is working hard trying to clear pathogens. Note: Common inflammatory tests like CBC, SED rate, ANA, C-reactive protein, along with lymphocyte, immunoglobulins, thyroid, and a metabolic profile will typically be normal for patients suffering from Biotoxin Illness.

C4a Activated by Mutant Mold

They draw a single vial of blood for C4a. Unlike tests like TGF-beta 1 that is in my experience notoriously difficult to get done properly, C4a is easier. Nonetheless, it’s almost assured that the phlebotomist hasn’t seen this test before. As such, make sure to take your doctor’s prescription and the Prescription Information below with details on how to do the blood draw for the phlebotomist. I would even recommend calling ahead and giving them a “heads up”. Make sure they draw the blood into a lavender top tube and politely comment to the phlebotomist that you’ve been told it’s very important to spin down the blood immediately and freeze it in order to get accurate results and that this is very important to you. You can take your script from your doctor to the nearest Quest Lab for the draw. You can look up and make an appointment online.

Lab Directions: TGFB1 CD4-25 C4a-C3a ADH Osmo Cortisol ADH

The reasons I like C4a are that Dr. Shoemaker uses the C4a marker in a protocol called Sequential Activation of Innate Immune Elements (SAIIE) that he used to prove that a building was moldy for court cases. I won’t go into those details here but suffice it to say that C4a will rise in moldy people within the first 24 hours of being exposed to mold toxins from water-damaged buildings and it will remain high until it is treated. In my own experience, this is exactly what happens. Also, typically C4a is way above the 2,830 ng/ml upper limit so it has a sort of dramatic impact. One caveat is that I’m assuming you are symptomatic – that you haven’t brought down inflammation to the degree that a lot of symptoms are gone by doing Extreme Mold Avoidance as described by Lisa Petrison and Eric Johnson or by taking anti-inflammatory supplements and drugs. If you have, then don’t be surprised if C4a comes back normal. Also, sometimes the presence of MARCoNS will suppress C4a.

Update November 25, 2014: In looking through Neurotoxicology and Teratology by Dr. Shoemaker, Dennis House, and James Ryan, I ran across an interesting chart related to C4a. Amongst other data, the chart shows the historical blood labs for folks with Biotoxin Illness. I was surprised to see that only 72% of cases had high C4a (>2850 ng/ml) while 89% had low MSH (<36 pg/mL) and 91% had low VIP (<25 pg/mL). This means that perhaps C4a isn't the best lab to look at if you're only going to pick one. As such, I'm torn between C4a and VIP. I like C4a from the standpoint that it's a nice marker to be able to monitor progress (VIP will always stay low regardless of inflammation levels). On the other hand, VIP has a higher correlation and based upon the new Physician’s Order Sheet (Updated 06/20/2014), VIP has gotten a bit easier as a blood draw for phlebotomists. This just brings to the fore the fact that no one marker can be used to diagnosis Biotoxin Illness. Update End

If you can’t get support from a physician, you can order your own test without a doctor’s prescription at EconoLabs – Test ID: LC-004330 for $240. Note: Lab testing labeled “complement C4” is not the same as the “C4a” test. I can’t speak to the accuracy of the test but I’m mentioning it here just in case it’s helpful

EconoLabs

The results of your test will be sent to your doctor. Get a copy of the results. You want to make sure the results say that the test was for C4a (and not C4 as this is a different test) and then check that you’re within the normal range of 0-2830 ng/ml. In combination with a positive Biotoxin Test, susceptible genes, and an inflammatory marker C4a that is only otherwise high with infections, pregnancy, vasculitis (inflammation that destroys blood vessels), and adult insulin dependent diabetes, how much more encouragement do you need to take Biotoxin Illness seriously?

C4a Prescription Information

  • Name of Test: NJC-C4a (Note: Labs occasionally mistakenly do C4 when C4a is ordered.)
  • Lab to Use: Quest Labs
  • Attn: Specimen Management Department
  • Patient takes script to local Quest office
  • Specimen Draw Procedure: 2ml plasma – EDTA Lavender top tube. Draw specimen, spin down immediately and separated plasma into transfer tube and freeze. Label specimen plasma.
  • Lab Code: 42658
  • Diagnostic Insurance Codes – Patient Dependent
  • 279.8 Immune Mechanism Dis Nec
    • Other specified disorders involving the immune mechanism
    • Endocrine, nutritional and metabolic diseases, and immunity disorders
  • 780.79 Malaise and Fatigue Nec
    • Physical weakness, lack of strength and vitality, or a lack of concentration.
    • Exhaustion that interferes with physical and mental activities.
    • State of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli.
    • An overwhelming sustained sense of exhaustion and decreased capacity for physical and mental work at usual level.
    • That state, following a period of mental or bodily activity, characterized by a lessened capacity for work and reduced efficiency of accomplishment, usually accompanied by a feeling of weariness, sleepiness, or irritability.
  • 286.5 Hemorr D/O Dt Circulat Nec
    • Other hemorrhagic disorder due to intrinsic circulating anticoagulants, antibodies, or inhibitors
  • 710.0 Syst Lupus Erythematosus
    • Systemic lupus erythematosus is an ongoing chronic inflammatory connective tissue disease in which the body’s immune system malfunctions and attacks healthy tissue -autoimmune disease.

Important Note About LabCorp & C3a/C4a
Make sure if you use LabCorp that they send the blood to the National Jewish Medical and Research Center Laboratory in Denver (C3a:#840702 and C4a:#857334). If the sample is inadvertently sent to LabCorp’s own facilities, the results will not be meaningful as a completely different method and range are used. Ask the phlebotomist to make sure to write ACCESSIONING: C3a & C4a MUST BE ROUTED TO NATIONAL JEWISH on the requisition slip in large print.

VIP Prescription Information

  • Lab to Use: Quest Labs
  • Attn: Specimen Management Department
  • Patient takes script to local Quest office
  • Specimen Draw Procedure: 3ml plasma – EDTA Lavender top tube. Draw specimen, spin down immediately and freeze in plastic vial. Note: Dr. Shoemaker’s Physician’s Order Sheet June 2014 says “room temperature” – lasts 3 days at room temperature and 7 days when frozen.
  • Lab Code: 84586
  • Diagnostic Insurance Codes – Patient Dependent
  • 279.8 Immune Mechanism Dis Nec
    • Other specified disorders involving the immune mechanism
    • Endocrine, nutritional and metabolic diseases, and immunity disorders
  • 286.5 Hemorr D/O Dt Circulat Nec
    • Other hemorrhagic disorder due to intrinsic circulating anticoagulants, antibodies, or inhibitors
  • 710.0 Syst Lupus Erythematosus
    • Systemic lupus erythematosus is an ongoing chronic inflammatory connective tissue disease in which the body’s immune system malfunctions and attacks healthy tissue -autoimmune disease.

Diagnosing Biotoxin Illness Using Labwork

If you happen to be one of those people that has already had a slue of labwork done, depending on what tests were done, you may be able to make an accurate diagnosis without having to look at symtoms at all. Specifically, of the eight Diagnostic Labs listed below and out of the thousands of patients Dr. Shoemaker has seen, every person with Biotoxin Illness had four or more abnormal labs and every healthy control had fewer than four abnormal labs.

Biotoxin Illness Diagnosis Based Upon Lab Work

  1. MMP9 too high (normal range: 85-332 ng/mL)
  2. TGF-b1 too high (normal range: <2380 pg/ml)
  3. C4a too high (normal range: C4a: 0-2830 ng/ml)
  4. MSH too low (normal range: 35-81 pg/mL)
  5. VIP too low (normal range: 23-63 pg/mL)
  6. ADH high when Osmolality is low or ADH low when Osmolality is high (normal range: ADH – 1.0-13.3 pg/ml; Osmolality – 280-300 mosmol)
    When looking at labs, if plasma Osmolality (not urine osmolaity) is 295 then ADH is calculated using the formula ((295-280)/(300-280))=(X/(13.3-1)) >>> (15/20)=(X/12.3) so X=9.225 and ADH should be around 1+9.225=10.225 (+/-) 2.5. However, in CIRS individuals, it’s not uncommon to find osmolality is in the high range of normal while ADH is in the lower range of normal – you have to look at osmolality and ADH as a pair on the labs.
  7. Antigliadan Antibodies (present – gluten sensitivity)
  8. Anticardiolipin Antibodies (present – associated with miscarriages, cold hands and feet, stroke, heart attack, vascular problems, and Lupus)

Update April 16, 2016
In the 2016 NeuroQuant II paper titled Reduction in Forebrain Parenchymal and Cortical Grey Matter Swelling across Treatment Groups in Patients with Inflammatory Illness Acquired Following Exposure to Water-Damaged Buildings, a different criteria is used to establish patients with Biotoxin Illness – also known as Chronic Inflammatory Response Syndrome (CIRS). Instead of Antigliadan Antibodies(7) and Anticardiolipin Antibodies(8), VEGF and Cortisol/ACTH are used. In addition, the threshold for the number of symptoms indicating CIRS is raised from 4 to 5.

  1. VEGF (normal range: 31-86 pg/mL)
  2. Cortisol (normal range: a.m. 4.3-22.4 / p.m. 3.1-16.7 ug/dL) / ACTH (normal range: 8-37 pg/mL)

(See Surviving Mold Diagnostic Lab Tests)
Update End

Biotoxin Illness Lab Panel
Note: As of January 2016, LifeExtension is offering a Biotoxin Mold Illness Panel for $425. The panel includes MMP9, TGF-beta 1, MSH, ADH, and Osmolality. Unfortunately, TGF-beta 1 is run through Cambridge Biomedical and not either Quest or LabCorp as recommended by Dr. Shoemaker in his Physician’s Order Sheet 6-20-2014. We can only hope that LifeExtension has done due diligence and that Cambridge Biomedical results for TGF-beta 1 are comparable to Quest and LabCorp.

Mold Toxin Symptoms Are Numerous and Diverse

If you’ve taken the Biotoxin Test, then you’ve gotten a sense of the range of symptoms Biotoxin Illness causes. What’s interesting when you look at mold symptoms and those of other chronic illnesses is just how much overlap there is. In fact, I’m not alone in thinking that a lot of folks that are diagnosed with everything from Fibromyalgia to Multiple Sclerosis are being affected by mold toxins and have been either partially or wholly misdiagnosed. For example, in the DVDs Dr. Shoemaker presents the case of a girl diagnosed with MS by specialists who is cured when put on his mold protocol.

MS Cured by Treating Mold (at 5 mins)

In addition to the symptoms in the Biotoxin Test, I’ve included my list of symptoms that I jotted down when reading various materials – not that I had all of them. It is by no means all inclusive but is an attempt to show you just how many and variable the range of symptoms are.

Cognitive Symptoms

  • Short term memory
  • Poor concentration
  • Difficulty finding words
  • Reduced knowledge assimilation
  • Disorientation in familiar places
  • Confusion

More Mold Symptoms

  • Acid Reflux
  • Anxious But Not Anxiety (for me, it can get insanely bad – maybe from lactic acid build up or gut dysbiosis?)
  • Arthritis
  • Asthma
  • Autoimmunity (gluten, cardiolipins, the myelin sheathing around nerves, and others)
  • Bizarre Dreams (when exposed, my dreams go to the “dark side”)
  • Chemical Sensitivity
  • CCVSI (I included this one as treating this with a Lumen pad has helped – CCVSI is poor blood flow in the back of the neck due to vein narrowing as a result of reversed blood flow – see Shoemaker’s Pulmonary Pressure)
    Dr. Paul Cheney on ME/CFS (Chronic Fatigue)
    Dr. Paul Cheney Seminar (CCVSI at 14:30)
  • Depression (unbelievable how bad it can get – heavy, thick gray closing in from all around)
  • Delay Recovery From Normal Activity
  • Facial Tics
  • Faint When Standing
  • Flushing
  • Hair Loss (high TGF-beta 1)
  • Headaches
  • Hearing Loss
  • Increased Pulmonary Artery Pressure (limits blood return to heart – also see CCVSI)
  • Jittery (for me it’s best described as internal trembling)
  • Keratosis (rough skin patches and small acne-like bumps – high TGF-beta 1)
  • Light And Sound Sensitivity (any sound out of the ordinary regardless of loudness is very jarring)
  • Lung Disease – Restrictive (Interstitial Fibrosis from high TGF-beta 1)
  • Nausea
  • Night Sweats
  • Polyps/Nodules – Nasal & Vocal Cord (high TGF-beta 1)
  • Pulmonary Anomalies
  • Pustular Sores – pus-filled blisters
  • Over Reactive Nervous System
  • Over Weight (for those high in Leptin)
  • Persistent Tremor (put a loose piece of paper over an out held hand and watch it shake)
  • Poor Sleep
  • Poor Night Vision
  • Sleep Apnea
  • Sluggish Full Stomach
  • Tinnitus (ringing in ears)

Mold Symptoms – Lisa Petrison

Lake Tahoe

It’s really instructive to read the work of mold gurus Lisa Petrison and Erik Johnson. They have taught themselves how to quickly recognize mold based upon reading their bodies and have documented all sorts of mold toxin variants and their symptoms. In his VIP DVD, Dr. Shoemaker talks about how folks with Biotoxin Illness will begin experiencing symptoms within as little as 15 minutes inside a moldy building. I’m still working on developing this skill but from my own experience, I do believe it is entirely possible to tell if a location, building, or item is moldy within minutes and I have no reason to doubt that Lisa and Erik are picking up on all different types of toxins with varying effects based upon what part of the country a person is in.

In fact, it’s really scary to think about what’s happening on a microscopic level given my studies related to farming and soil microbiology. I think Lisa is right on in including a link to the paper by Professor Don Huber, internationally recognized plant pathologist, that describes how the use of chemicals (especially RoundUp) in farming is dramatically altering the microbial make-up of the soil (read Dr. Elaine Ingham and how the fungi in soil are being depleted in favor of bacteria) and consequently has resulted in the appearance of a super tiny pathogen that proliferates in the presence of bacteria and is making animals really sick (people are “animals” too). Below is a list of mold toxin symptoms related to the Tahoe area that Lisa has graciously given me permission to reproduce from her blog. I liked this list because it has some symptoms that aren’t typically mentioned and gives you a better sense of just how diverse the range of symptoms is.

Outdoor Toxins of Particular Relevance to Mold Illness Patients – Lisa Petrison
Dr. Huber Explains the Science Behind New Organism and Threat From Montsanto’s Roundup
Dr. Mercola Interviews Dr. Huber about GMOs

Lisa Petrison’s List

  • Heart pain (in particular, a feeling of a needle through the heart).
  • Heart palpitations.
  • Chest pressure (a feeling of a dagger through the chest or a marble – sometimes actually swollen – at the sternum).
  • Excruciating headaches (migraine-like but not one-sided).
  • Extreme photophobia (light sensitivity).
  • Extreme noise sensitivity.
  • Cognitive problems that go beyond brain fog (e.g. inability to add numbers or recognize words).
  • Weird memory losses (e.g. inability to remember the name of one’s hometown or to find the way home).
  • Loss of sense of direction (e.g. driving around randomly).
  • Seizures or “white-outs” (where the brain goes 100% blank for extended periods of time, sometimes even when a concerted effort is being made to bring up thoughts).
  • Severe trembling.
  • Paralysis (literal paralysis or feelings of paralysis; often one-sided).
  • Organ pain (particularly kidney pain).
  • Strong feelings of empty, hopeless depression (unrelated to circumstances).
  • Strong suicidal feelings.
  • Feelings of paranoia, like people who are usually your friends have become enemies.
  • Strong feelings of anger and lack of inhibition in expressing it.
  • Other emotions that are bizarrely inappropriate to the situation.
  • Convulsions.
  • Extreme MCS.
  • Marked gait problems.
  • Inability to sit or stand up.
  • Reactivation of herpes viruses (and emergence of related illnesses such as shingles, Bell’s palsy or herpes simplex lesions).
  • Severe POTS (e.g. needing to use a wheelchair).
  • Extremely deep skin “dents.”
  • Feeling of skin being burned.
  • Sore throats that make eating difficult or impossible.
  • Veins pop out of skin (look “ropy”)
  • Stuck thinking (e.g. spend all day clicking on the same three websites or playing mindless Facebook games).

Other Good Mold Symptom Lists

Toxic Mold Illness Diagnosis
Symptoms of Biotoxin Illness

Initial Treatment Steps and Avoiding Mold Toxins

Phew, I’m starting to get worn down writing this post and I can just imagine how tired you must be if you’ve made it this far. As such, I’m going to make this section on the steps to initial treatment short and sweet and leave the details for another post.

Physicians Certified in the Shoemaker Biotoxin Illness Protocol
Mold Physicians (not all follow Shoemaker Protocol)
Mold Illness Medical Practitioners (not all follow Shoemaker Protocol)
Surviving Toxic Mold Doctor List

Step 1: Get Away from Mold – this is easy to say and many times not so easy to do. It requires that you are both able to figure out what the sources of mold are and then have the resources that allow you to get away from those sources. If you read some of my other posts, it’s not just your home and workplace that are of concern. Given that NIOSH claims that 50% of buildings have a degree of water damage that makes them a real problem for people with Biotoxin Illness, you can see how even if home and work are OK you may be getting exposed at the supermarket, hardware store, or any other place you spend more than a few minutes in. On top of that, I can confirm what mold gurus Erik Johnson and Lisa Petrison have been saying all along – that some outdoor locations are also troublesome. It becomes a real jigsaw puzzle.

The way to solve the puzzle is to first determine that your home and workplace are safe. In Mold Testing, I cover all the ins-and-outs related to mold testing. The ERMI DNA test, or the less expensive HERTSMI-II, done by MycoMetrics are still your best bets. The HERTSIM-II is less expensive because it only looks at a subset of molds in the ERMI test. This subset was identified by Dr. Shoemaker as being most problematic and telling in terms of if a building is habitable for moldy people.

MycoMetrics
Interpreting HERTSMI-2

If it turns out your home is moldy then you have to make the hard decision of trying to remediate the building or move. This is a huge topic that I’ve started to whittle away at with a somewhat rough post that describes some of the steps in a remediation project – I’ve learned a lot since and plan on improving that post and adding others. The determination of whether to try and remediate or move has to be done on a case-by-case basis but be aware that many have tried the remediation route and failed.

Mold Remediation 1

Step 2: Take Binders – if you’ve got Biotoxin Illness, it will take forever for your body to clear mold toxins without help. This is especially true if you’re being exposed by hidden sources. Without taking binders like Cholestyramine (CSM) or Whelcol, it’s like trying to bail out a boat-load of accumulating toxins with a thimble – your liver just can’t keep up. Unless you live in a pristine, mold-free environment, your body alone will not be able to clear all the incoming toxins. If you’re able to take the binder that Dr. Shoemaker’s data shows is capable of significantly clearing mold toxins, then you’ll be able to make headway against the accumulated toxins in your body provided you live in environments that pass ERMI or HERTSMI-2 testing. I cover in detail what binders are effective, the difference between Cholestyramine (CSM) and Whelcol, and so on in the Binders article. If you don’t take binders then the only way you’re going to have a chance of getting better is moving to a part of the country that is virtually mold free.

By the way, Dr. Shoemaker has repeatedly said that when it comes to Biotoxin Illness, that it takes very little time in a moldy building to make folks with Biotoxin Illness really sick. In other words, don’t think that you can load up on CSM and go into moldy buildings. You can’t. In my experience, it takes days or longer to clear up from a mold hit taking CSM and anti-inflammatory supplements.

It should be noted that folks with either a Lyme or Multisusceptible haplotypes can have trouble with CSM if they’ve been exposed to Lyme. Actually, some have trouble even without exposure. If Lyme was an issue and CSM is poorly tolerated, the protocol is to stop CSM and then take omega-3 fatty acids (fish oil) at a daily dosage of 2.4 g EPA and 1.8g DHA along with going on a no-amylose diet for a week prior to reintroducing CSM – although I’d try this even if I didn’t think Lyme was an issue if I was having trouble with CSM.

In addition to the oil and diet, some may also need to start with micro-doses of CSM gradually increasing up to target levels. With all these extra steps, most can tolerate CSM but there will be a few that still have trouble. In these cases, Dr. Shoemaker has said in his FAQs, “Welchol 625 working up to 2 tabs TID is an acceptable substitute for CSM for the really hard hit people who are just too weakened to take CSM at first.” And finally when all else fails, Dr. Shoemaker has commented that for really difficult cases he would sometimes prop the person up with a short course of VIP while going after MARCoNS.

Of course, I’m assuming that if Lyme was present that it got knocked out with a short course of antibiotics. Given that I’d been in a part of the country endemic with Lyme, Dr. Shoemaker did a Western Blot when I saw him – although he doesn’t trust the results for several reasons. Specific to Biotoxin Illness, we know from Dr. Shoemaker’s work that folks with Biotoxin Illness have trouble making antibodies. However, Igenex and Western Blot Lyme tests rely on the presence of antibodies to tell if Lyme may be an issue. In other words, if you’ve got Biotoxin Illness, these tests are crude markers at best.

What to Expect from Cholestyramine (CSM)

Step 3: Kill MARCoNS – you can read all about this in my post on MARCoNS.

Step 4: Take Anti-Inflammatory Supplements – this begins with taking omega-3 fatty acids (fish oil) at a daily dosage of 2.4 g EPA and 1.8g DHA – more in the article AGA – Diet – Detox.

Biotoxin Illness Treatment Protocol by Dr. Ritchie Shoemaker
Dr. Shoemaker’s Treatment Protocol by Dr. Sandeep Gupta
Dr. Shoemaker’s Treatment Protocol by Dr. Keith Berndtson

Conclusion

Well that’s it for this long post on how to tell if you’re moldy. Taking the Biotoxin Test is pretty straight forward. The VCS visual test is another point of reference but doesn’t really contribute much toward making an initial diagnosis. The HLA DR gene test and C4a inflammatory test are very telling so long as you take the time to make sure the test is done properly. Once you understand how diverse and devastating the symptoms to Biotoxin Illness are and do enough preliminary testing to strongly suggest you’ve got Biotoxin Illness, it makes sense to address Biotoxin Illness first and then see what symptoms remain.

91 thoughts on “Are You Moldy?

  1. I found the pop-ups extremely annoying, almost to the point of making me stop taking the test. I also found the “more” extremely annoying, almost enough to make me stop taking the test. If you have info to provide, just provide it instead of all this business that require mouse motions to either activate or de-activate. If I find this annoying at my nearly recovered state, I’m sure I would have just closed the page if I had taken the test while I was still quite ill.

    • Thanks for persevering and then taking the time to send me feedback 🙂 I was using popups to help with focus and remembering. Admittedly, the popups are a bit jarring. I’ve removed most of them and put in text messages in their place. I’m not sure what to do with the roll-out symptom descriptions. I did this to try to keep the test from looking too overwhelming. Given that this would require some time to re-code, I’m hoping keeping the cursor over on the left-hand side will be a workable solution. Thanks again.

      • I thought the test was excellent and simple. I’ll be sending many friends that link. Thank you for putting this together. This is the best biotoxin illness site I’ve read. Very good job, and thank you.

  2. I have been suffering from black toxic mold for some years .I have had a specialized test to confirm this my house had been tested and I had to move out unfortunately were I am now also had mold and I am very sick but don’t know where to go. I live in Michigan.

    • I’m so sorry to hear about your situation. Given that the 2011 NIOSH report says that 50% of buildings in the U.S. have water damage, it can be a real challenge to find a mold-free place to live. Nonetheless, this is so important to do. If you’ve got the money, you may want to do a “HERTSMI-II” test with MycoMetrics to better determine if the next place you’re thinking about moving to is safe. HERTSMI-II it’s less expensive than an ERMI and looks at all the molds in Dr. Shoemaker’s HERTSMI-II formula for determining if a place is OK. If you need help interpreting the results, go to HERTSMI-2 on Dr. Shoemaker’s website.

  3. I have only had celiac gene test which confirmed I have the gene which makes me susceptible to mould. I have also tested positive for Lyme disease and pyroluria. Had two months treatment for mould (cholestyramine anhydrous) which helped a little but two months after commencing antibiotic treatment for Lyme I have started to feel better. I still have some really bad days usually due to poor sleep. I look forward to being well again. Thank you for your work on the test.

    • You bring up a good point about determining both if you’re susceptible to biotoxins and what the source of the toxins is. For many, its mold but Lyme toxins can also be problematic. There are genotypes that aren’t bothered by mold but are affected by Lyme toxins. As an aside, one of the signs that Lyme is still active is getting a strong herx when starting on Cholestyramine after antibiotics. By the way, if you had the celiac gene typing that looks at HLA-DQ2 and HLA-DQ8, this is not sufficient to determine if you have a susceptibility to mold based upon Dr. Shoemaker’s work. For that, you need HLA DR by PCR done through Lab Corp that shows DBR1, HLA DQ, DRB3, DRB4, and DRB5.

  4. Former teacher and sick from my school building. Left in Jan. 2004 and never returned. Fortunately found Dr. Shoemaker who saved my life. I stay well but have to be very careful where I go. A re exposure can make me very sick for a week or longer. Horrible illness that affects so many people and most doctors are clueless and offer no help. Lots of kids sitting for hours a day in moldy schools.

  5. Dear Greg, Great work. I find it very helpful toward understanding Dr. Shoemakers work, which is difficult, and I am in nursing. My symptoms from mold probably make it worse. I want to mention, as a suggestion only, that clicking on the “more” in the test often overwhelmed me, and I too almost quit too. It even sent me back to the beginning of the page a couple of times. But I think it is such an important endeavor on your part to sort out the reliability of the test, I persevered. I also had difficulty with the HLA test results discussion. I hope that someone sees an easier way to say it. Thanks from a family in a tent.

    • Thanks for persevering and sending me feedback. It’s nice to hear the blog is useful and all I can say about living in a tent is I feel very fortunate to have a clean place indoors. I’ve updated the Biotoxin Illness test. I fixed the bug that sent you to the top of the page and changed the way the “more…” information is displayed. Regarding the HLA DR test interpretation, when I wrote that section, I was thinking it was too complicated. I’ve written the blog “Deciphering HLA DR Labs” to hopefully make interpreting this important test easier.

  6. THANKS so much. This is really helpful. I scored something like “most certainly have mycotoxin illness”, or something like that ( moldy brain!). Hope I can remember how to find and access this later and esp after having my tests done. Perhaps you could help with finding practitioners in my area.

  7. I’m almost through my BEG spray but every time I take the VCSTest.com I seem to get a lot of the outside columns (especially the right side) wrong. Do you have any clue what the outside columns are linked to?

    • To pass the VCS test, a person must be able to see to row 7 in column C and row 6 in column row D. Rows A and B detect nutritional deficiencies. Row E may is used to monitor improvement in treating Biotoxin Illness.

      Updated Information:
      Are You Moldy – VCS Test

      I haven’t heard of improvements in VCS from clearing MARCoNS per say. Poor VCS is due to a lack of oxygen (poor blood flow to the optic nerves) due to Biotoxins so it’s more a measure of toxin levels in the body. Although, if you don’t see improvement in VCS after one week into CSM, this can be caused by MARCoNS. The VCS test is also one of the hurdles that a person must pass before qualifying for VIP per Dr. Shoemaker. Also, people who have had or still have Lyme and are given CSM, will get sicker and their VCS test scores will drop in columns D and E. Otherwise, most folks will begin to see improvements in VCS in about one week after starting Cholestyramine (CSM).

      Note: VCS is one way to tell if binders other than CSM and Whelcol are having any impact. However, just because VCS improves with another binder, this is not the same as the pile of data from Dr. Shoemaker that says CSM and Whelcol work but it’s at least a good sign.

      Dr. Shoemaker VCS FAQ

      For those that have the cash, support the continued work of Dr. Shoemaker – the guy that figured out VCS was useful by taking his online test.

      Surviving Mold VCS Test

  8. Hi Greg,

    I too appreciate very much all the work you’ve put into this blog to try and help folks like us who have been sick for so long.

    I do have some concerns however about Dr. Shoemaker’s symptom list, as some of those symptoms, in fact many of them, can be attributed to so many other illnesses and/or nutritional deficiencies.

    Some also seemed repetitive. Like short-term memory, poor concentration, difficulty finding words, and reduced knowledge assimilation…aren’t those all basically the result of or a version of the first one: problems with short-term memory? Believe me, I’ve been sick for 12 years, and my short term memory has gotten very bad in the last 2 years, so I’m in no way trying to negate what you say, just trying to understand more.

    Lastly, Ms. Petrison’s list of symptoms seems to be very different from yours and Dr. Shoemaker’s list. I don’t understand that, and it just I guess makes me wonder what could be causing what?

    Sorry for all the questions, but I have a couple more if you don’t mind:

    I read on your blog and elsewhere that some people like the mold warrior guy say that there are all these other outdoor toxins that one must avoid, and that makes some sense. But studies have also shown for example that pollution from China has been found in the pristine slopes of the Cascade mountains in Oregon, so aren’t these toxins basically everywhere?

    Lastly, if 24 or 25% of the population has these mold genes proposed by Dr. Shoemaker, why aren’t 1 out of 4 people suffering from Biotoxin Illness?

    Again, thank you for your blog.

    • Wow, really awesome questions.

      So the deal with the symptoms on the Biotoxin Illness Test is that this is a relatively small subset of symptoms that Dr. Shoemaker collected data on over the years. I don’t know how many symptoms he tracked, but in his DVDs it looks like quite a list. At a certain point, he took this data to a Statistician and posed the question as to whether there was a way to use this data to develop a test that could be used as a diagnostic tool. The Statistician selected and combined symptoms into the 13 clusters that comprises the test. The symptoms selected and their groupings was done purely based upon statistics – what symptoms and groupings give the highest degree of predictive accuracy. That’s why the list you see in Dr. Shoemaker’s 13 clusters is different from others like Lisa Petrison.

      I know what you’re saying about some symptoms seeming like they’re repetitive. Actually, each of the symptoms are associated with one of the markers that Dr. Shoemaker measured – VEGF, TGF-beta 1, and so on. As such, I suspect that’s why he tracked them separately. Also, if you look at the 13 clusters, symptoms like Word Recall and Memory are both in the same cluster so having one, or the other, or both doesn’t change the scoring.

      Regarding outdoor mold toxins, mold gurus, Erik Johnson and Lisa Petrison have talked a lot about how various parts of the country are worse than others. This is consistent with my own experience. You’re right that mold toxins are everywhere. Take a look at my blog What Is Biotoxin Illness. There is a very real difference between the levels of toxins found in water damaged buildings and outdoors. Additionally, although many parts of the country are more or less OK, there definitely are areas off-limits to folks with Biotoxin Illness. For example, the low-land down by river near my home will set off a strong reaction if I spend more than 10 minutes there. So in the end, it’s really about a person’s sensitivity in relation to the concentration and type of toxins.

      Lastly, being one of the 24% that has susceptible genes to Biotoxin Illness does not mean those genes are being expressed. This gets into the concept of epigenetics wherein science has discovered that your particular gene sequence is not the final word on how your body expresses itself. In other words, it’s possible to be wheelchair ridden like Dr. Terry Wahls with MS and completely reverse the disease through diet – by changing the genetic expression through what you eat. It’s really cool because it says we can potentially have a huge impact on our health by changing behavior.

      Getting back to Biotoxin Illness, it’s unknown what triggers someone with a tendency to get Biotoxin Illness to actually get the illness. According to Dr. Shoemaker, it seems like it’s a combination of a strong stressor such as being really sick along with exposure to toxins but this hasn’t been proven. That’s why when I have someone tell me that they believe they will get better from Biotoxin Illness by treating Candida alone, I can’t say that it definitely won’t work. It might. Who knows, maybe by addressing Candida in some novel way, the epigentics will get switched back and that person will now be able to clear Biotoxins again. It’s a long shot in my book, but everyone has his or her own path.

      I hope you’re feeling well very soon.

      • I’m in complete agreement regarding the epigenetics aspect, the toxic load aspect, and have read someplace where someone recovered from mold illness after being treated for parasite infections and something else. If I can find it I’ll let you know.

        Damien Blenkinsopp is doing really well by addressing the methylation/epigenetic issue. Sorry, I don’t know how to spell his last name, but I’m sure you’re familiar with him and his blog.

        The Quantified Body

        Thanks Greg.

        • Hi again Greg.

          Speaking of methylation, I thought you might want to check out this video by Dr. Ben Lynch. At about the 55 minute mark, he talks about drugs to avoid if one has an MTHFR polyymorphism.

          One of them is cholestyramine. I was surprised to see this on the list, but thought you and others might be interested.

          Here’s the link:

          https://www.youtube.com/watch?v=Mwn7RjSx3zM

          • Thanks Marcia. Very useful.

            Dr. Ben Lynch is great. It’s been a while since I studied methylation. I did have 23andMe testing done and got into it quite heavily for a time. I’ve got one mutated MTHFR C677T gene (heterozygous).

            The one caveat I would like to add is that my take on what Dr. Lynch is saying is that if you have a mutated MTHFR gene and are taking cholestyramine (CSM) then you should test your folate levels as you may need to take more methylfolate because the CSM will likely bind and remove some of it. The reason I mention this is because it’s so important to try super hard to take CSM if you’ve got Biotoxin Illness. I realize this isn’t always possible, but every effort should be made. I’d hate for people who know that they have a bad MTHFR gene and also have Biotoxin Illness to get too worried about taking CSM.

          • Good point Greg. I’m glad you made that clarification. I’ve heard some people have had some bad reactions to cholestyramine, but maybe that’s because it’s depleting the folate, so taking folate away from it might help?

            Also, I think that might be a reason why Dr. Joe Brewer’s protocol may be working for some people, but only if they keep taking the antifungals for the rest of their lives. (Although there are a few who have been able to go off them.)

            Still, he’s finding toxic mold in the sinuses, but not doing any sort of binding. That seems wrong to me, as the mycotoxins will just keep recirculating over and over…

          • Agreed, taking CSM away from any folate supplementation based upon Dr. Lynch’s information makes good sense. In general, CSM should be taken an hour after meds and supplements anyway. Active Lyme can cause a bad reaction but some without Lyme have trouble too. You can micro-dose CSM gradually increasing up to the target. Alternatively, Dr. Shoemaker in his FAQs writes, “Welchol 625 working up to 2 tabs TID is an acceptable substitute for CSM for the really hard hit people who are just too weakened to take CSM at first.”

            From what I understand, Dr. Brewer is just going after fungi in the nose. I think this makes sense and he has definitely gotten good results. However, if someone has Biotoxin Illness, I would definitely work with Dr. Shoemaker’s protocol first and then maybe try treating nasal fungi after. I mention this in my blog on MARCoNS.

        • I’d be very interested in that link if you can find it about getting better from mold by treating parasites. Of course, if the person never had lab work confirming Biotoxin Illness, we can’t conclude much. Still, those n=1 cases are tantalizing.

          Also, I don’t know if I’ve read Damien’s material or not. I did study methylation to a degree but I’d be interested in a link if you have it.

  9. Looking through these old posts
    I just had my marcon test swab done third one I am finally clear negative of the monster!
    After moving 4 months ago out of my moldy house to a nice safer apt, getting rid of old furniture and moldy things,and doing a nose aspiratir and my dr changed my med each month .
    Been on csm all along but like I said I only just moved 4 months ago. Hoping now csm will work better and he’s got an anti fungal going after mold next to use in nose aspirator.

    I see info on the methylation problem which I have. My Dr put me on some thing called deplin it’s folate already methylated .
    But I take it first thing in morning for depression works very well I take my csm many hours after that if that helps.

    It’s pricey but you can get from brand direct a 3 month supply is like $60 a month for the 15 mg. compared to hundreds at pharmacies .

    • Debby,
      Awesome that you knocked out MARCoNS. What did you use as a spray?

      Do you have a link to “brand direct”. Also, Woodland Hills sells 240 grams of pure CSM for $180 and 150 grams for $120. That works out to (180/240)= 75 cents per gram and (120/150)= 80 cents per gram respectively. Can you check the price from “brand direct”? Also, is it pure CSM?

      Thanks.

      • Sorry this reply so late
        The spray actually I have in drops and spray thieves essential oils from young living…. kills bad stuff I drop in my mouth 2-drops or put in water 2-3 times a day when I was fighting marcons especially I was on a nasal machine from asl with medicines and the med and stuff can drip down ur throat so do a dropor two of thieves in my throat when using that machine, spray my hands and clean machine with the theives spray..

        I also use silver biotics brand a few times a day I think this combined with the med the dr used and getting out of my moldy house going to a newer apt did the trick.
        I’ve been doing everything for year but I only moved 4-5 months ago out of the moldy house then it started to finally work its futile to use csm or marcon med if your still being poisoned by mold.

        now Im hoping csm will work better with marcons gone and he’s put me on nystatin and chelating med in a nose irrigating thing for mold in my nose confusing I guess marcon gone but he still using a nose approach for mold ? I thought nystatin was for yeast ?anyone know about this he is using shoemaker protocol I do not see this with shoemaker ?
        PS the brand direct pharmacy online where I get my methylated folic acid called deplin I think is just brand direct.com

        hope this helps or someone might know about nystatin mold

        • Thanks for the information Debby. It sounds like in addition to a prescription from ASL pharmacy you also supplemented with Thieves oil and colloidal silver. I’m guessing the ASL prescription that you administered with an inhaler was BEG spray (antibiotics with an EDTA biofilm buster) to knock out the MARCoNS.

          It now sounds like you’ve switched to Nystatin (topical antifungal) and “Chelating PX” consisting of EDTA and Polysorban X (biofilm buster). Although this treatment for fungal colonies in the sinuses isn’t part of Dr. Shoemaker’s protocol, I do think it makes sense to treat. You can read what I’ve written about it in the MARCoNS article.

          Thanks for the information.

  10. Question: My marcon is gone. I was without my csm med for about 3 days. I’m quite sensitive. My leg pain weakness is one of my inflamation mold markers.

    So I went back on it today only got one dose in. Will build up next days and sure shooting I feel lousy brain fog pain.

    Am I reacting to my csm or I was at penny’s awhile today. Could it be I got mold exposure or reacting to csm cause I was off many days I usually feel good after taking it.

    I also am suspecting a certain window area in my new apt. Just moved 4 months ago or it could be a chair that may have picked up mold at old house was put aside for Christmas & just put back by this window Sunday. Every time I sit there my legs hurt. But I moved the chair and it still happened with different chair and that window so suspecting both the original chair and that window!

    Should I get an air purifier or get the chair steam cleaned?

    Be advised I’m a member of surviving mold site but I can’t figure out how to ask questions and I never get answers anyway.

    Thanks for this blog. It’s a great support.

    • Hi Debby,
      It doesn’t sound like the symptoms are coming from the CSM – you usually feel better after taking it. It sounds like you were doing OK up until recently? If that’s the case, then it seems like the most likely culprit is the chair. Of course, any store can be a problem but the leg pain seems to be centered around the chair.

      Your situation reminds me how we have to become good detectives when dealing with mold! For me, when symptoms are bad, I basically just want to stop everything that has even the slightest causal link. This may make sense until symptoms abate but then it’s time to be brave and start adding each factor back in until I take another hit and figure out the source. Also, if something like CSM hasn’t bothered you in the past, then it’s highly unlikely it’s bothering you now. It can take real courage to be “logical” like this when the situation gets bad but I just don’t know any other way to figure out the source of the problem. Anyway, it’s great you’re listening to your body. Maybe others have additional suggestions?

      The chair sounds like it came from a moldy place? The only “moldy” plush furniture that can be cleaned and therefore kept is leather (hard material like wood, plastic, metal can be kept too). Even then, it needs to be cleaned with QUAT making sure to get all the nooks and crannies underneath. (That’s leather with a smooth finish – not suede.) If it were me, I would definitely take the chair out, HEPA vacuum, and then wipe down the apartment with QUAT or hydrogen peroxide. I’ve had good results from a high quality HEPA air-cleaner with carbon – see my Sleep Sanctuary blog.

      Did you get a HERTSMI-2 done on the apartment? For what it’s worth, Dr. Shoemaker’s FAQs have a lot of information and are inexpensive.

        • Two other ideas:
          Dr. Ackerley has told me that a mistake some people are making is only taking one dose of CSM. This seems to lead people to get sick from its effects. The theory behind this is that the CSM binds with that first batch of bile, which tells your liver “Uh oh, need to make more bile!” Your liver then makes more biotoxin-loaded bile, and if you don’t take at least a second dose of CSM to “sop it up”, your body reabsorbs the bad bile – and you re-react to the biotoxins.

          Second thought, I once had a problem batch of CSM. It had a slight chemical odor, and made me and my husband ill. I reported it to the pharmacist, but no one else had reported a problem. But it sure bothered us. Is your CSM new? You might try ordering again, either from a different company or the same one, but ask for a different batch. Then you could see if you are better with that one.

          But when it comes down to it, exposure does seem to be the most important issue I’ve run into, and taking Greg’s approach to things has really helped. We all must become detectives.

  11. My daughter, Kristen, is dealing with this right now. Is there someone in the Raleigh, NC area she can consult with? She has taken 8 tests and 4 so far show that she has a problem. She would like someone to confirm that she should start CSM.

  12. Hello,
    I’m wondering if burning mouth syndrome is a symptom of mold exposure? I have the 11,3,52B genotype. I have had this burning mouth for 5 years, actually it started after a hysterectomy. I’m now on bioidentical hormone creams. The only way my mouth doesn’t burn is if I increase or decrease some of my hormones. If I keep the dose constant the burning returns. It’s crazy! I just remediated my house and I’m crossing my fingers when I do another HERTSMI. I also started Welchol which I feel is a step in the right direction. I’m thinking that when I treat MARCONS maybe the burning mouth might stop. I would appreciate any thoughts from you. I just stumbled upon your website, thank you for this site. Brenda

    • Unusually skin sensations including burning is associated with Biotoxin Illness, also called Chronic Inflammatory Response Syndrome (CIRS). It sounds like you’re experiencing burning inside your mouth? I’ve not experienced or heard of this but I haven’t talked to that many with CIRS. Perhaps others can comment?

      You’re right to make absolutely sure your place is mold-free. I just wrote an article on Mold Testing that may help. Besides testing, you can monitor VCS and lab work to help tell if you’re moving in the right direction. All the best.

      • I’m 4-3-53, and I’ve had this, too! It was awful for so long… Years of it. I still am prone when I get too much biotoxin exposure. Brenda, you are the 5th person I’ve met with BMS, but the only other one who also knows they have biotoxin illness. Wow. Thank you for sharing.

        Before I knew about the biotoxin protocol, I was able to get the BMS under control, even while I was in our moldy house and very sick… However, now that I’m out of mold exposure and 7 months into the protocol, it’s clear it came from CIRS (biotoxin illness). Each time I’m overexposed, that familiar tingle begins…! Then I switch back to my protocol of removing triggers, stay on my beloved CSM and it goes away.

        How I got BMS under tenuous control while still in mold was a bit of a miracle. I was on an 4-day food family rotation diet with food testing and elimination (this is currently the most accurate way to test for ingestion intolerances). I ended up figuring out that, for me, the BMS was triggered by both raw foods and processed vegetable cellulose – like found in most supplements as either the capsule or a filler. It took two years off raw foods to regain a mild tolerance (while still in mold). Now, out of mold and on the biotoxin protocol, I can eat a ton of raw foods without issue, and small amounts of processes cellulose. Whenever you see an ingredient with cellulose in it, like “methylcellulose” or vegetable cellulose in a food or supplement, that’s what I’m referring to.

        I’m not meaning to suggest that cellulose is the trigger of your BMS. But an intolerance or allergy to something may be. The four other people I’ve met with BMS had all figured out that raw foods were the trigger – for them all it was specifically raw fruit. I met them years before I figured out I had the same thing, and thankfully recalled their discovery. I looked online in forums for burning mouth syndrome and oral allergy syndrome (lots of crossover), and found many people mention raw fruit. Some also said that of all raw fruit, raw GREEN grapes were the easiest to tolerate. I tried this -it was true for me, too! In the end, though, I had to go off ALL types of raw food entirely, and cooked fruit for awhile. Not everyone has to do this…but as I tested each raw food, I found that all raw foods were triggers for me when I was at my weakest. But worry not, the body has amazing healing ability. Now, I can eat raw salads and fruit everyday, as well as raw nuts, raw milk, cheeses, and other animal foods.

        That said, I agree completely with Greg that diet is a critical component to healing from biotoxin illness.

        The Shoemaker-trained doc I work with, Dr. Mary Ackerley, pointed out that I was in the best shape for a multisusceptible person who’d been exposed to mold since 1 year old – that she’d met! She could only attribute my diet to that success. I now eat Weston Price style, but that took time and healing to be able to do. The interesting thing is, though – I was able to heal my gut about 75% while still in the mold. So, that’s really why I agree so strongly with Greg about the importance of diet.

        Good luck with the BMS. You will get better!

        • Thank you for your reply Kim. I guess I could try your suggestion and not eat any raw food and look at ingredients in supplements. However, I don’t understand why when I adjust my hormones it goes away. That is the only thing that makes it go away. I’m also considering oxalates. I do eat a lot of nuts! But I’ve never had a kidney stone. I’m not sure if that matters. I’m also wondering about your symptoms of burning mouth syndrome. You talked about tingling. There is no tingling for me. It is a burning of the lips that gets stronger as the day goes on. When I wake up in the morning I don’t have it. It starts around 10:00 – 11:00 and gets stronger throughout the day. When I adjust my hormones at night, meaning more or less of one of the hormones, then the next day I don’t have it. It’s like something is interacting with my hormones. Another question for you, How long off cellulose did you notice the burning stopping? Thank you for sharing. Brenda

          • Let’s see…I’ll start with symptoms. Originally, I only noticed the burning which I realized was happening after I ate. I’d wake up in the morning somewhat healed, and then it would worsen through the day. Once I found and got rid of most of the triggers, I noticed that the first symptom for me was actually a tingle sensation. The tingle would start around my lips, and then turn to a burn (quite fast if I ate a lot of the offending item). Then my lips would start burning all over, and the skin become hard to the touch. If I really overdid, they would split and crack all around them. Then my lips would blister and bleed, and look like I had spilled acid on them. I saw a lot of pictures online in those BMS forums that looked just like this – thank goodness for online forums. You know you’re not alone…

            When I discovered the main triggers and eliminated them, that put my body in a good state, without any symptoms. That took three months. Then, when I ate the offending thing, BOOM – a very severe response. This is because I had eliminated everything I was sensitive to, healed a bit, and then suddenly introduced the harmful substance again. In biotoxin illness, Dr. Shoemaker calls this the “sicker, quicker” phenomenon – after treatment, suddenly a small mold exposure causes a big reaction. The same thing happens with food sensitivities, once you remove all of the offensive items.

            In my case, I had a bunch of food triggers that I had eliminated through testing each one. I was off all of them (including all supplements) for 3 months at the time I accidentally discovered the cellulose trigger when I reintroduced some supplements.

            To be clear – I’m not implying that your cause is cellulose. I’m trying to point out that it could be anything you are ingesting. The fact that it starts at 10am and worsens though the day often indicates an ingestion sensitivity.

            As to hormones…In the end, my BMS was also linked to an auto-immune skin disease I’ve had for many years. It also causes burning and cracking and splitting. But it’s in a different location. Now, when I manage to overexpose myself to something that triggers BMS, I simultaneously have this other skin problem flare-up. This autoimmune disease is often treated with hormones, so I’m not surprised that hormones are connected. We know that biotoxin illness messes up the hormones in many people, and that MSH is linked to digestive tract health. To me, it comes back to what Dr. Shoemaker frequently talks about – that his patients are typically seeing all sorts of specialists for all sorts of ailments, and many are being treated for hormone imbalances. But the hormone imbalance they are being treated for is actually regulated by MSH, which is being affected by biotoxin illness. So, it’s not surprising to me that you’ve found hormonal treatments that help. From what you’ve described, hormones are helping, but not curing the issue? The same thing happens with food triggers – eliminating them reduces your reactivity, sometimes enough to heal in other ways, but it wasn’t the cause of the issue. Even when I was off all triggers, I still had BMS, but it was only activated with too much exposure.

            Now, it seems that biotoxin treatment may be a real cure for me – I can now be exposed to lots of triggers (eat raw food and cellulose) and be BMS-free, as long as I’m not exposed to mold. but add mold into the picture, and the other sensitivities come back.

            Figuring out the triggers first took an extremely thorough approach. In ingestion intolerances, some people have to take out EVERY offending food/substance to get results. Just removing one (like cellulose) would not have worked for me. Of course, it’s worth trying, but if it doesn’t work, that doesn’t mean that the one thing you eliminated was not a contributor.

            I hope that makes sense! I know we all want a simple answer, but these are complicated, multi-layer issues.
            Good luck!

      • Hi Greg,
        Just want to run this by you. Do you think a Rife Machine would help with CIRS?

        • I find the information on Rife machines intriguing from the standpoint that frequencies can aid healing. Personally, I had over 100 sessions using an Ondamed. This machine uses pulsed magnetic fields and is reported to be able to help with mold, parasites, Lyme, etc. While it did provide temporary relief that lasted up to a couple of days (that I so desparately needed at the time), it was far from the panacea it is often toted as for me.

          I’m not saying it’s not a reasonable adjunct therapy to try, but I’d definitely get the basics down first – living in a mold-free space, diet, binders, MARCoNS, etc. As an aside, I sometimes wonder if the healing response folks sometimes get when applying frequencies to their bodies isn’t a result of eliciting a healing response similar to when Acupuncturists use magnets on meridian points. It’s just a thought.

          • I’ve had a similar experience to Greg. It’s always so tough to know if you are using the right frequency, too. My naturopath and also a good friend of mine (both susceptible) have both used Rife machines consistently. It’s helped them in certain ways but was never a cure, unfortunately. An adjunct is a great term.

            My husband and I have more consistently used the Radiac, with silver solutions or on it’s own. It’s an Edgar Cayce thing. It kept me going at my very worst, before our (both of us) CIRS discovery. Very measurable benefits in reduced auto-immune symptoms, brain fog and headaches. But also not a cure for CIRS. We were very, very consistent. It did cure a neck-seriously-out-of-whack thing I had, and it helps me with EMF sensitivity. In the end, a mold-free space, CSM and diet have been our clearest “saviors”. My husband, our doctor and myself (all with CIRS) can all vouch for what Greg says about those factors, and we discovered Greg’s site after seeing these things work on our own selves. So, an independent control group! haha

          • Greg thanks for your comments on the Rife Machine. I understand what you are saying about the basics first. I remediated my space in my home and my HERTSMI came back higher than before. I tackled the source and removed it and this made the HERTSMI worse. Mycometrics has told me to just keep cleaning and the count will go down eventually. In the meantime I’m taking Welchol and will begin BEG spray soon. I will also start on cholestyramine after I’ve been on the BEG spray for a while. I’m unable to remove myself from my home and I’m just trying to think of things that will help. My markers have gone up since my remediation but the VCS score was better. Go figure that one. I have one of the dreaded genotypes so I’m not sure if Lyme is involved. I believe a NeuroQuant will be able to tell me if Lyme is involved. I’m just trying to figure out if a Rife would help. I guess I just need to sit in front of one and see what happens.

          • Mold remediation requires special knowledge when it comes to cleaning for those with CIRS. Just to be clear, you may be able to bring down spore counts with cleaning and even pass a HERTSMI-2, but actually clearing the space of super tiny biotoxins could take a very long time. I think Greg Weatherman has a very good understanding of this and I really think he’s on to something with his fogging method. Of course, you have to white-glove clean the space and discard fabric furniture first and then follow with fogging to remove the nano-sized particles.

            Personally, I would try to at least make my bedroom super clean as discussed in Sleep Sanctuary. At a minimum, I would wipe down all the surfaces with QUAT or alcohol as outlined by Weatherman. I’d seal up any forced air ducts, keep the door closed at all times, and use a space heater. After cleaning, I’d buy some inexpensive box fans to air-wash the space. I’d open the windows, put a box fan blowing out to develop cross ventilation, and then move the other fans about for several hours in an attempt to completely flush out the space. If the space started to feel a bit off, I repeat the process. The sooner you can get clear of those toxins, the better.

          • Hi Greg,
            I’m replying to your comment about cleaning. I had someone clean for me after the remediation. The steps were hepa vaccum, wipe with 409, hepa vaccum again and then they sprayed everything with a product called mold control “Concrobium”. I left this on and didn’t wipe it off. That was where I went wrong. The product should have been wiped off. I then waited about 4 weeks and did a Hertsmi. I’m told the mold control captures and crushes the mold. So my Hertsmi had the captured mold on it. So, the next time I cleaned I vaccumed everything and then fogged the mold control. I let it fall to the ground, which was after about 4 hours. I then wiped everything down with water. I waited 2 days and did another Hertsmi. I didn’t have any dust on the cloth. I’m really not sure if they can test with no dust. The person advising me said to send it in anyway. So now I’m waiting on the results. I’ve read some of your post on ozone. Do you think ozone would work? I’ve read where Dr. Shoemaker says you can’t kill what’s already dead.

          • According to what I’m seeing, Concorbium uses a peracetic acid-based formula similar to hydrogen peroxide. Like hydrogen peroxide, the mold is killed through oxidation when the product is applied. If it is simply sprayed, Concorbium does not “capture” mold. If it comes into contact with mold through spraying, it will kill the mold.

            The only way Concorbium can “capture” mold is if it is fogged into the air at a density great enough to literally create a dense cloud of fog in the room followed by fogging water to cause the particles to participate out of the air. I believe this approach was developed by Greg Weatherman. The liquid fog particles in the air do latch onto super tiny airborne biotoxins and airborne mold via “gradient or shear coagulation”.

            When fogging, plastic should be laid out on the floors to capture the majority of the contaminated liquid particles that fall to the floor. The plastic can be carefully picked up and taken outside with all remaining surfaces wiped down. Otherwise, the fogging causes the biotoxins to precipitate out of the air only to be re-aerosolized when the dried surface is disturbed. It sounds like you basically did this so chances are you removed a lot of the biotoxins that cause CIRS. Some of these biotoxins are so small that can float around in the air nearly indefinitely if the air isn’t cleaned by either fogging or air-washing. I’ve got my fingers crossed.

            In terms of remediation, it’s important to make the distinction between mold and the toxins it produces – see What is Biotoxin Illness. Ozone may or may not kill mold. The jury is still out. By saying the mold is already dead, Dr. Shoemaker is conveying the fact that it’s the tiny biotoxins and not the mold itself that makes folks with CIRS sick. So the real question is does ozone (that also works through oxidation) neutralize biotoxins. As discussed on my website, mycotoxins are a part of the toxic soup of biotoxins mold and bacteria emit. There are studies that show ozone neutralizes mycotoxins. However, mycotoxins only make up 2% of the total mix of biotoxins and no one knows which of the biotoxins are the real trouble-makers. So can ozone potentially help? To the degree that CIRS is in part being caused by mycotoxins, the answer is yes.

  13. Okay, what is really frustrating for me:

    On the Biotoxin Illness Symptoms I had 33 of the 35 symptoms (very objectively, and many others). The 33 symptoms were in all of the categories.

    The symptoms began 5 or 6 years ago while renting a room in a home for a year. After I moved out, another roommate told me she was moving out because the home had been condemned for mold. I had already asked my conventional doc about the possibility of mold based on my symptoms, and, no surprise, he scoffed at me big time and told me I was being ridiculous.

    3-4 months ago I had 9 blood tests my doctor got out of Shoemaker’s book, and I only had TWO that were abnormal, but he still diagnosed me with mold.

    I’m on CSM and feel like I’m getting worse. That said, I recently moved in with my fiancee and I haven’t tested his place yet to see if there is mold here yet because I’ve been feeling so crappy it’s been difficult to do anything but sleep and eat and take care of very basic stuff.

    But if Shoemaker says everyone who has mold has FOUR or more of the blood tests abnormal, then have I been misdiagnosed???? Ahhhh, I could just freakin’ scream right now!!! Is it possible that Lab Corp did not perform the tests correctly? I’m not sure what to do next? Maybe get restested? Find a different doctor? (I’m in Salt Lake City, Utah.)

    BTW, my abnormals were a high TGF-Beta1 and a low ADH. No surprise there, I pee like it’s my job.

    • Although you’re very symptomatic and have had exposure to mold, you’re right to focus on labs. Proper lab work will tell you whether you’ve got CIRS or something else. For others reading this, the 4 out of 8 rule Kristy is referring to can be found in this section of the Are You Moldy article. I only mention this because there are more than 8 tests that Dr. Shoemaker recommends so if you’re going to use this rule you have to make sure you’re looking at the right tests.

      Getting lab work done properly is a big challenge! Many of the tests are out of the ordinary. There’s a good chance this is the first time the phlebotomist has done this test. I strongly recommend calling the blood draw center ahead of time and let them know its important that they call the main office to get directions. When the phlebotomist shows up with a “cheat sheet” of directions that have been sent to her by the main office, I know my chances of getting good results are much better. If she shows up empty handed, you might as well just get up and leave after insisting again (in a nice way) that these are fickle tests that require attention to detail.

      It’s also important to use the recommended lab and the right range. Some tests need to be done by Lab Corp only, some by Quest only, and some can be done by both. Regarding lab ranges, labs regularly update “normal” test ranges using the results of previous tests. If you are processing a test that is almost exclusively used to diagnosis CIRS, is it any wonder that the ranges will be way off? How many healthy individuals are getting C4a, MSH, or VIP measured? Very few. You can look up test details on Dr. Shoemaker’s Physician’s Order Sheet (Updated 06/20/2014). You can also read a bit about testing nuances in this Are You Moldy article.

      Some do get symptom flair with CSM. As you know, it’s very important to make sure the place you’re living is mold-free. Technically, you should be monitoring VCS and MMP9. You can read about this in the Binders and MARCoNS articles. Tick born illnesses can cause symptom flairs with CSM and MARCoNS can stifle improvement. As a matter of course, I think it makes sense to take high dose fish oil and go on a no-amylose diet straight away as these measures make CSM more tolerable. Of course, you’ll also want to confirm that it’s just an “intensification” of symptoms from CSM and that you don’t have Lyme and the like.

      Did you get your HLA DR typed? This lab is fairly straight forward and I feel very useful. “Pee like it’s my job” – that’s funny 🙂

      • Are you on pure csm resin not the one with fake sugar ? You could be reacting to those ingredients if it’s not The kind with no sugar or fake sugar

        I get mine from woodland hills pharmacy ?
        Have you done the visual eye test it’s a good marker for mold
        Maybe you should get the Marcons test too
        You won’t get well on csm if you have Marcons but make sure whoever does the swab in your nose knows what they are doing
        I had no improvement on csm while I was still in my moldy house and my bartonella did not show up on blood work but dr sure I have that along with mold
        My peeing is often still but way better not like 30 times a day or something when I was in moldy house a year ago did they test all dr s suggests even glucose for diabetes etc

        Just a few observations ftom one who has done this a year Marcon finally gone
        I did read on from shoemaker more sensitive patients have to titrate up on csm start slow I for one think 2 a day is my target amount I feel best on titrating up to 3 but 4 is too much fior me personally
        And make sure your not constipated or csm will be futile it binds stuff and it needs to come out to get it out of you
        Hang in there
        It would be good if you have a dr who treats mold toxin and cirs maybe shoemaker could suggest one where you live ?

        Hope this helps
        I agree theses tests can be very tricky

  14. Hi,
    I was wondering, if I were to go get a CBC right after the point of feeling sick from mold exposure (such as right after work), would the results show proof of an inflammatory response? Im just having a lot of trouble trying to prove environmental illness at work due to mold exposure in order to get a reasonable accommodation from my employer to be able to work from home. By the time I get to the doctor’s office after going home from work from the previous evening and going to sleep for 8 hours, I appear fine and they think im just being psychosomatic.

    • Yeah, psychosomatic; that’s a good one. It just means they’re clueless.

      I’m not aware of any marker on a Complete Blood Count (CBC) panel that is indicative of Biotoxin Illness. In fact, typical lab work including CBC, SED rate, ANA, C-reactive protein, lymphocyte, immunoglobulins, thyroid, and a metabolic profile will typically return normal labs for folks with CIRS.

      To really prove this, Dr. Shoemaker uses a protocol he developed called Sequential Activation of Innate Immune Elements (SAIIE). In this approach, the patient is first gotten better using Dr. Shoemaker’s 12-step protocol. Lab work is taken to confirm this. The person then exposes themselves to the building in question while MMP9, TGF-beta1, VEGF, and C4a are monitored. These markers will rises predictably in a specific pattern if there is mold exposure.

      You could try taking a ERMI or HERTSMI-2 sample. Although my guess is that your employer would dismiss it, it would at least provide you with useful information. Also, please be careful about determining that mold is the issue. I’ve heard of cases where many people in an office were convinced they we’re being exposed to mold only to find out that the real issue was very high EMF levels. Diagnosing Biotoxin Illness requires appropriate lab work.

      • Thank you so much. Im pretty sure its mold bc my employer did air quality testing due to my complaint and they found out there was aspergillus, alternia and penicillum growing in the office carpet. Plus im the only one getting sick which really sucks bc I have no back up.

        • Wondering if I could ask one more question. I cannot afford all of the labtests that dr shoemaker recommends. I was looking to take at least one test that could indicate proof of my symptoms in order to get approved for a reasonable accommodation from my job. Due primarily to the price, I was between getting tested for low msh or getting tested for high TGFbeta1/low vegf. I was wondering which of the two would be a better choice to ask my doctor to test me for? Also, if I were to get tested for high TGFbeta1/low vegf, do I need to go in right after leaving from work? I feel fine over the weekends but during the week, while in my workplace building, I feel like I’m seriously close to dying. Thank you for your help

          • In case you didn’t know, folks with Chronic Inflammatory Response Syndrome (CIRS) do not recover over the weekend. That doesn’t mean that mold isn’t the issue, just that you probably don’t have CIRS. Of course I could be totally wrong but it just sounds like you’re totally fine over the weekends? If you don’t have CIRS, then information like 90% with CIRS will have low MSH, and it will be out of range along with TGFbeta1, VEGF and the rest until treated, don’t apply. If you don’t have CIRS, perhaps something like allergy testing would be more helpful because if you can show you’re allergic to the molds growing in the carpeting (it sounds like they didn’t replace the carpeting) then maybe you’d have a better case? However, from what I’ve read, it’s hard to get employers to be responsible.

            If you have CIRS, then you could test for low MSH as there is a lot of information showing that low MSH results in a host of disregulation. However, the “normal” range reported by the labs has been changed so it’s OK to have zero MSH now-a-days. So, even if you’re very low, it will be listed as normal. Furthermore, what’s to say your employer simply won’t say you’ve got a pituitary issue resulting in low MSH, or that they don’t believe in CIRS – lots of professionals don’t. Unless you’re employer is very accommodating (doesn’t sound like it if they think you’re “psychosomatic”), this sounds like it could be very frustrating. If you want to pursue this, I think talking with an attorney is probably a much better approach.

            I want to remind you again to consider other factors like EMF, high VOCs, various chemicals from insulation types, pesticides, and the like. Perhaps you can get your employer to allow an Inspector that can measure for these although I’m guessing that’s unlikely? Sorry I could not have been of more help.

          • Its not that im totally fine over the weekends. Its more like whatever im accumulating from breathing the air at my desk during the week, im able to get rid of more of it when im off from work and I begin to feel more normal, but then I get to monday and I have to go back to the building again. I have also been taking alpha lipoic acid and nac supplements and I just started taking activated charcoal. Also when I sit in a sauna I feel a lot better when I come out bc I feel like im sweating that stuff out of my pores. Not sure if it might be something other than mold but I definately feel like im having chronic inflammation going on especially in my sinuses, behind my eyes, and i get a lot of brain fog. I spend most of the day taking shallow breaths and trying to hold my breath. This has been very very debilitating for me for the last 2 years.

          • That sounds aweful. My heart goes out to you. There’s definitely something going on and it may very well be mold but without proper testing, it’s really hard to say. I’d hate to see you go down a dead-end. Did you get a copy of the mold report? Was there mold actually growing in the carpeting from high moisture, or did it have high mold counts? The reason I ask is because carpeting will always have mold in it since mold is everywhere. Did you get a chance to read the Are You Moldy article? You may be able to get a better sense of whether it’s CIRS.

            Anyway, I want to encourage you to take care of your health! It’s so important. Two years is a long time to feel terrible.

          • Coming from one who lived in moldy wet building damaged houses for 30 years
            And have CIRS and biotoxin mold disease
            Are you tied to that job really ?
            I would have left both houses if I had know. About damage of mold back then 30 years ago
            If you aren’t holding onto the mold the genetic marker test would tell you that but like Greg says allergy testing could help but I’m like why expose yourself to the poison so to speak…the stress and energy to get work to do stuff for you though they should but will they…
            Also the eye test for mold marcons is cheap most who have fail on that test have mold mans marcons and a nasal swab.for marcons might be beneficial but meds are not cheap , csm pulls the mold out but you would need to know if your reacting allergy wise or it’s toxic to you your body can’t get rid of it unless you use the csm or something .
            After a year out if work I feel no job is worth it yeah we have to live and have money but some jobs are easy enough to switch and get a safer enviorment .
            What I thought and we knew back 20-30 years ago allergy treatments helped but it was probably mold illness they just didn’t know back then. Now we know .
            I’m sorry it’s a costly disease illness and testing but usually you can make payments to labs and get cash discounts if you have no insurance .
            I wish you wellness and wisdom in decisions to get there .

          • Part two I apologize for typos still having brain issues and using my iPad greg I can’t seem to scroll up or down after writing to fix my typos ..just wanted to say I’ve given up a big beautiful house well it was time after 6 years of staying after hubby died but we were in that house 20 years or more another one 10 both had water damage
            It was making me sick was not worth staying my marcons took 6 months but moved and it is gone now working on getting mold out of me and adore a smaller place
            It will still take time but my enviorment is safe it’s worth it less is more choices so we can heal are worth it too ..
            Blessings to you

          • Awesome comments Debby. It’s wonderful to have you pitch in here. Sorry to hear about you losing your hubby and then your house. You sound like a very courageous woman who’s willing to do what it takes to get better!

        • It basically started when the dept I work in moved to an office room that ended up having a water damaged carpet due to a leaking stairwell on the other side of the room (office is close to a warehouse section of the building). I was having symptoms like burning lungs and burning throat and eventually put in a complaint with hr. Hr had them do an air quality test and they found out the carpet was moldy and agreed to change the carpet. before they changed the carpet I was able to bring a dr’s note and they allowed me to move out of the room for about a month and I felt fine after I moved. After they changed the carpet they made me move back into the room, however, when they changed the carpet, I guess they just ripped it out and replaced it with another one on top but I believe the mold spores/toxins were still remaining in the room bc I dont think they did anything to clean the actual air and my symptoms returned although not as severe as before. Over time it just kept getting worse and worse and I felt like my health has been wearing down (ive been trying to find another job during all this time but havent been successful yet). within the last 3 months, they finally allowed me to move out of the room again but this time when I moved out, I have been still having the same symptoms with brain fog and inability to breathe normally, and concetrate etc. now theyre giving me a hard time about working from home bc theyre saying that I dont have medical proof. I dont know if im just more sensitized now or if the mold is spread throughout the entire building.

          • OK, now I’m starting to see where you’re coming from. There certainly seems like a very strong causal link here! And again, I’m so sorry to hear about your troubles.

            If it were me, I’d try to find a way to get my HLA DR genes typed – see Are You Moldy. That way you’ll know how to better prioritize your situation. Also, maybe you could surreptitiously do a ERMI Swiffer dust sample from work to show the air is still loaded with spores. As you described, tearing out the carpeting without proper containment spreads the mold throughout the building. It’s not uncommon for poor remediation work to make the air quality much worse. I don’t know; would being able to show you’ve got susceptible genes along with being symptomatic and a HERTSMI-2 score above 15 be enough for your employer? It certainly wouldn’t stand in a court of law but they sound like they’re at least trying to be responsible – although like most, they don’t really understand mold.

            Dr. Shoemaker’s website has articles on proper remediation protocols, disability and the like. You can certainly show they didn’t follow EPA mold remediation guidelines and there are some good articles describing the health impact of mold without even having to get into the subject of CIRS.

            In the interim, you may want to consider changing your diet – see Dave Asprey’s Bulletproof Diet or Doug Kaufmann’s Phase One Diet. Also, turmeric is very helpful for inflammation among other benefits. Make sure to get the kind without a black pepper additive. The general recommendation is 1-2 grams but I think a person could easily double this when they’re taking a mold hit.

          • Yes, thank you so much for all your advice. Its been very hard bc i feel like ive been going through this alone. Thank you Debbie, i definately have plans to quit my job hopefully within the next year and a half but probably sooner if i cant resolve this disability accomodation issue. This has been dragging out so long that i figured that i might as well try to let them fix it otherwise i feel like they need to pay me to leave unless im able to find another job before putting in my notice. i did speak to osha and they informed me that the moldy carpet itself was considered a health hazard so they were obligated to change the carpet, but there are no government regulations on the allowable amt of mold spores in the air so therefore once they change the carpet, its no longer considered a workplace health hazard. I really dont think my employer doesnt believe me bc ive been saying the same thing for almost 3 years now. I think im dealing more with corporate politics bc it seems like they dont want to say or do anything that would indicate that they did anything negligent which is why theyre putting it on me to prove that im actually having symptoms, which i’ve learned that its very difficult to do when dealing with an environmental illness. But thank you so much for your blog and all your helpful information. Yes, i am very familiar with turmeric.

          • You’re going to do great. I think the hardest part is coming to terms with mold illness and that includes all the politics. It sounds like you’re there.

            That’s very interesting about OSHA saying there is no allowable limit on mold spores in the air. Although it’s totally ridiculous, I did find OSHA: A Brief Guide to Mold in the Workplace that states, “Currently, there are no federal standards or recommendations, (e.g., OSHA, NIOSH, EPA) for airborne concentrations of mold or mold spores. Scientific research on the relationship between mold exposures and health effects is ongoing.” Like you said D, they will drag their feet to avoid taking responsibility and OSHA is setting the example so the politics are very deep.

            On the other hand, OSHA Technical Manual Section III: Chapter 2 does talk about “Sick building syndrome” and under the section “Airborne Microorganisms” states that although “levels in excess of (1,000,000 fungi per gram of dust or material) do not necessarily imply that the conditions are unsafe or hazardous”, it does sound like these levels are cause for further evaluation. Certainly there are all sorts of papers showing that Aspergillus and Cladosporium cause adverse health effects.

            In my experience, reaching one million spores per gram of dust isn’t that uncommon in a moldy building. If you wanted to push the issue, perhaps you could make the case for overall poor indoor air quality and try to force your employer to show that they meet OSHA standards on mold counts, VOC levels, minimum air exchange rates, and other air quality measures? On the other hand, it sounds like it’s going to be a real challenge and often it’s just not worth it.

            Statistically, TGF-beta1 (88%), MSH (89%), and VIP (91%) have the highest probability of being out of range in folks with CIRS.

            Good luck and all the best!

  15. How do you find a doctor that is willing to work with you on all this? I am in PA (near Lancaster), and none of the doctors seem to want to get involved.

    • You may want to look at Finding A Mold Doctor. Scroll down to the section entitled “Finding A Mold Doctor”. There are some links and a tip from a reader about calling Hopkinton Drug. Other than that, perhaps one of the Facebook Groups might be able to point you in the right direction.

  16. Thank you is not enough! Ive been sick from toxic mold for at least 14 years. Your continuing efforts have offered much understanding of this life altering illness. May God continue to enrich you.

  17. Hi Greg,

    Thank you so much for this post and content – I’m sending to my friends and family. Great stuff.

    A little bit about me:

    Young 25 year old male struggling with chronic (BAD!) fatigue for 3-4 years now, constant sinus/runny nose, aches, brain fog, confusion, disorientation, unrefreshing sleep, hot skin, acne, and digestion problems. I’ve tried everything under the sun and have had SEVERAL blood tests – everything came back fine except high IGG for EBV and Mycoplasma. My doctor (Dr. Berndtson – Chicago approved doctor under Shoemaker’s regimen) has been tremendously helpful – we initially started on Cholestrymine but didn’t see any results after 2 months (occasionally cheated with alcohol / bread on the weekends). Also took Shoemaker’s nasal spray to wipe out the coag neg staph with biofilms. Failed the visual test, gene type test showed I didn’t have the dreaded gene type but a bad type, lived in the moldy basement of my parent’s house the past 5-6 years (flooding all the time – carpet had to be removed because of the mold etc). So, we assumed mold was the cause. I had 10-12 symptoms from the biotoxin symptom exam too.

    Is there anything else to try? Anything you’d suggest?

    I’ve read that Charcoal helps some types of mold toxins while cholestyramine helps others. I’m desperate and am just looking for a cure to my health problems – especially the fatigue and brain fog!

    Again, thank you so, so much. I appreciate your time and help.

    James

    • James,

      I have a few questions that may provide some insight.
      1. What do you mean when you say you didn’t see results taking CSM?
      2. Did your VCS scorces improve to the point of passing when taking CSM?
      3. Did you stop CSM and if so, did symptoms worsen?
      4. Are you still in that basement?
      5. Did you test the place you’re at now for mold?
      6. If you’ve moved, what items did you take to your current place and how did you clean them?
      7. You say your tests were normal. What tests did you have done? (MMP9, TGF-b1, VEGF, C3a, C4a, MSH, VIP, etc.)
      8. By a bad gene, do you mean one susceptible to mold?
      9. What measures are you taking to avoid mold exposure in other buildings?

      • 1) I was on CSM for 2 months (October – end of November 2014); my symptoms did not improve nor worsen. Saw no Herx reaction. Was in a mold-free apartment at this time, too.
        2) Did not test my VCM after CSM.
        3) Yes, stopped CSM and met with a Shoemaker-approved doctor in Chicago (great doctor – he was shocked I didn’t improve). After that appointment, he concluded that bacterial/viral infections were now the likely culprit.
        4) Currently living in a mold-free apartment (moved out of the moldy basement in October 2014)
        5) Haven’t tested the place I’m now at for mold. It’s clean, but good question – I’ll get an ERMI test done just to be safe. It’s a very small apartment though and very, very clean – no past floodings, etc.
        6) I didn’t “live” in the moldy basement, but I spent nearly ALL of my time at home there. My bedroom was on the third floor. I brought some clothes and some books but cleaned the clothes 2x with Borax etc and wiped the books with Borax. Not sure if that was enough but my mold doctor said that seemed good enough.
        7) I meant several tests looking for my root cause behind the fatigue/aches/sickness all came back fine; doctors said I was healthy. This was BEFORE I met and found this mold doctor in Chicago and learned about the mold regimen. My mold doctor (Dr. Keith Bendston) tested me for the Shoemaker panel; came back with high C4A and TGF-b1. I believe my MSH was also out of range but need to confirm that for you.
        8) I work in a brand new office building in a high rise (downtown Chicago). Brand spanking new – immaculate. I don’t even visit my parent’s house anymore because of the moldy basement – I avoid it at all costs. Other than that, I can’t think of any moldy areas that I possible visit.

        Miscellaneous points:
        – my doctor thinks mold (over years of exposure) weakened my immune system which gave way to EBV and Mycoplasma infections. Right now I’m on Valtrex to address the EBV. But I wonder if I still need to detox more mycotoxins and even address some mold toxins that are likely residing in my sinuses. As I said, I was also on the BEG spray while taking CSM. I’m wondering if Dr. Brewers nasal spray would help? Perhaps try taking charcoal as well?

        Thank you so much, Greg – I’m just trying to get to the root cause. I’m so incredibly desperate for an answer and to get my energy and mental acuity back. I really appreciate your time – your website is simply awesome.

        James

        • James,

          Here are a few ideas.

          1. We know you have a susceptible gene, are symptomatic, had a history or exposure, and know 3 out of the 4 labs for diagnosis of CIRS (see Diagnostic Labs). It’s nearly a “slam dunk” that you’ve got CIRS.
          2. I’m perplexed that Dr. Berndtson concluded that CIRS wasn’t an issue. To begin, without testing, we don’t know that your apartment or workplace are acceptable. This is the very first step to treating CIRS and it is critical. Granted it sounds like the buildings are OK, but there are lots and lots of stories about how new buildings were moldy. You must test.
          3. You should have been tested for more than C4a, TGF-beta1, and MSH.
          4. Read my Don’t Rely On Symptoms article. I’m not sure what was growing in your parent’s basement but with flooding all the time, it may have been Stachybotrys. This is a wicked mold. Even if it was Aspergillus and the likes, 5-6 years, regardless of where you were in the building, is almost assuredly going to have done major damage. This is not going to all go away with 2 months of Cholestyramine (CSM).
          5. Both MMP9 and VCS should be monitored while taking CSM – see Binders article. For all we know, your VCS stayed the same or got worse. Granted MARCoNS can hamper improvement in VCS, but these data points can be very helpful. (I hope you tested to confirm MARCoNS were knocked out.)
          6. Given that your TGF-beta1 is high, you must be on a strict no-amylose diet. You should also be taking omega-3 fatty acids (fish oil) at a daily dosage of 2.4 g EPA and 1.8g DHA as this will help with steps 4-11 of the protocol. By the way, no-amylose is stricter than no-gluten. Also, there is no such thing as a little gluten. If you have a gluten sensitivity (and it is highly probably that you do), then the amount in a wafer the size of your thumbnail is enough to set of an inflammatory response that lasts for months! Many beers have gluten in them. When I very rarely drink, it’s high quality vodka and that’s it.
          7. In general, it looks like this is a case of poor execution of Dr. Shoemaker’s protocol. You will very likely need to be on CSM for a lot longer than two months at full dosage and then two daily maintenance doses for years. I don’t know how Dr. Berndtson justifies skipping past CIRS when it’s almost certain you have it and have not followed protocol (perhaps I’m missing other details). Personally, I’d back up and start over treating CIRS.
          8. Treating nasal fungi helped me even after I knocked out MARCoNS. Also, I took higher doses of Valtrex before learning I had CIRS and it did give me some temporary relief.

          You’ve got to put on your “game face” here. Dig in and learn about how to treat CIRS well. I’m not saying this is the only root cause, but from where I stand, it’s a major factor.

          • Greg,

            Thank you SO much for your lengthy response and thorough input – I really, really appreciate it more than words can express. I’ve been looking for input from fellow sufferers for quite some time now, and I’m so lucky to have come across this phenomenal website!

            Couple of questions for you:

            1) Can I do another cleanse of CSM / Charcoal while on Valtrex? I’ll ask Dr. B and start from scratch. Just wanted to see what you think (I know you’re not a doctor – just curious what you think though). Is that feasible?

            2) I’m going to get my new apartment checked. Do you recommend an ERMI test?

            3) What nasal spray would you suggest? Go on BEG again? I’ve read Dr. Brewer’s nasal spray formula is very, very successful. Think that might be worth a try.

            4) I really think that the years and years of mold exposure weakened my immune system which then gave way to Candida overgrowth and then that’s when the viral/bacterial infections (EBV and Mycoplasma) were born (or activated). Also, I’ve read some people say not to use CSM from Walgreens (lots of sugar) and to use a compounded pharmacy. While I was on CSM, it was standard packets that I got from a Walgreens pharmacy. Does that matter you think?

            5) While I was on CSM, I was taking fish oil daily for the most part. I’ll be sure to include this when I start again.

            Thank you so much, Greg. I’m telling Dr. B. about your website because many of his mold patients look for resources to read up on, etc.

            Seamus

          • I’m glad you found my reply to be helpful. That’s what it’s all about – helping each other.

            1. Just to be clear, CSM isn’t a “cleanse” in as much as it’s a binder you’ll most likely have to take at varying levels for a long, long time. I don’t know about Valtrex and CSM. I suppose it’s like most other medications – see the Binders article.

            2. If you’ve got the cash, I’d do an ERMI. There is more information in my Mold Testing article.

            3. Read these MARCoNS Comments in regards to BEG spray and similar alternative antibiotic combinations. Also, BEG spray is for staph bacteria while Dr. Brewer was treating for fungi – two totally different pathogens.

            4. Take a look at the Binders article. Some people do not tolerate regular CSM for various reasons and consequently have to take the pure form. CIRS definitely weakens the whole body and subsequently leaves it open to further attack.

            5. When you study Dr. Shoemaker’s protocol, you’ll see that fish oil or krill oil should be taken until you’re feeling great and this may take a while.

            Cheers.

  18. Our HVAC ductwork is the type that is lined with fiberglass. Is it possible to clean this type of ductwork for potential mold, or is it impossible to really clean and needs to be replaced. How do you know if mold is even in it. And then obviously the duct work goes up between the studs, so who knows what is in there and how to get it out. What is the best way to clean ductwork, and/or is it possible, even when done as a preventive measure? We did a Hertsmi 2 test of our carpet, and it was 14. I can’t figure out where the mold could be coming from.

    • For those with CIRS, given that furniture can’t be cleaned, neither can ductwork lined with fiberglass. Sorry.

      Normally, they use a “whip” driven by compressed air to dislodge the dust in ductwork while running a very large vacumm unit that pulls all the debris outside. You can read a bit about this in my Sleep Sanctuary article. It works quite well on metal ductwork. I’m not sure what the whip would do to fiberglass. My guess is that it would tear it up. For those that get their ductwork cleaned and who have a fresh outdoor air supply, I recommend having a filter adapter built by your local HVAC shop to hold a smaller pleated filter that fits onto that duct run. This will help reduce dust build-up in the future – outdoor air is dusty.

      The list is long when it comes to sources of mold. Here’s one list that popped up on Google. Be advised that it often takes a real expert to find hidden sources. You can look at ERMI & HERSTMI-2 Scoring to get sense for what type of water damage environment produces the molds that you have a lot of based upon your HERTSMI-2.

  19. Thank you for your excellent series of blogs relating your toxic mold experiences. You have the ability to turn Dr. Shoemaker’s diagnostic tests and treatment protocols into an easy to understand narrative. I have joined a newly established Facebook Mold Group, devoted exclusively to the Shoemaker treatment protocols. Dr. Shoemaker’s long-time secretary is also participating in this new group, as a member of the group. I am not the owner or administrator of the group. I would like your permission to copy this blog onto the group, as a permanent file of the group. Thank you.

    • Hi Joseph,

      What a nice complement to find that you think the content on this site should be archived. It’s also great that various groups are forming around the subject of biotoxins. As it stands, I would ask that you simply link back to this site. I make a tiny amount of money from the links to products I recommend on Amazon. This money is critical for offsetting website fees and keeping me interesting in writing more content. Placing my material on other sites could end up burying this one.

      If the day comes that this site can’t support itself, I’ll let people know in advance along with providing copyright permission so this material can continue on other sites. By the way, I don’t particularly enjoy having to commercialize the site even if it’s only with Amazon links. However, the reality is that less than 1 in 10,000 unique visitors will offer any financial support simply by asking.

      • O.K. I understand. May I suggest a way that you could accomplish your goals, and possibly increase the amount you earn, while, at the same time, broadening the audience for your great writing. Why don’t you compile your essays into an e-Book, and sell it on Amazon for a nominal amount of $5-$10-$15. You could get your money “up front”, and, at the same time, widen your audience to the general public. Keep up the good work.

        • That’s very kind of you to think of me and offer suggestions. I like that idea. Maybe in a year or so I’ll have published enough articles that I would feel like I’d done sufficient service to the subject that it’d be worthy of an e-Book. All the best.

  20. This is the best information on mold sickness I have read thank you so much. Was it the answer for you. ie. did Dr shoemakers protocol make you well? Also is diet important? Does this get addressed in the protocol?

    Thank you so much

    • Hi Lara,

      “Well” is relative. Compared to when I was at my worst, I’m light-years better. Compared to when I was in my prime in my late twenties, I’m maybe at 70%. Basically, I’m beginning to enjoy my life and plan once again for the future.

      From my vantage point, the first four steps are absolutely critical. The other steps also need to be addressed but there are alternatives that I’ve found work just as well – at least for me. Diet is super important – see Alternative Mold Therapies.

      I should also mention that this has been a multi-year journey. In part, I lost a lot of time figuring out where the sources of mold were in my home, learning how to remediate properly, and then actually getting my home clean. We ended up cleaning the house from top to bottom no less than three times! Like so many before me, I lost a lot of time working with a home that was moldy. I do not recommend this route.

      • So, I’m speaking for three people, myself, my husband and my doctor. Our doc found out about CIRS, and realized that was what we all have – we all were tested and found to have the haplotypes and CIRS. We started through the protocol early 2014. My doc was able to stay in her home, but had to get rid of much of her belongings. A couple decades ago she lived in a home with known mold. She is much, much better now, and described to me that her “worst now is still better than her best before”. It’s similar for my husband and myself, but for me the road to health has been extremely rocky. I’ve learned I’m remarkably sensitive to a lot of things, even outdoor molds and algaes in our area. I am more clear headed than I’ve been in decades, and my good days are better than I’ve ever experienced, even in early childhood. (I was exposed very early on and for almost my whole life.) The bad days still suck though, but they aren’t any worse than before – it’s just that I now know how it feels to feel good. The contrast is tough.

        Regarding ERMIs and HERTSMIs. My husband and I had to leave our home and almost everything behind. Our home had an ERMI of 17.

        We learned that the ERMI and HERTSMI are not perfect. They are guidelines only. We moved into a home with a negative three score (-3.57), and it still has some mold in it that causes us a problem. As we’ve progressed through the treatment, we also found that my parents’ home, with an ERMI of +2.26, is too moldy for my husband and I. Its HERTSMI score is 4. That is considered very safe, right? Yet both my husband (mold susceptible) and myself (multisusceptible) cannot be in there more than a minute or so without reacting -and then it takes days to get over.

        When I first started treatment, I wasn’t sensitive enough to discern the problems in our -3.57 home or my parents’ +2.26 home. Now, almost 12 months into treatment, I’m like a mold-dog whether inside or out.

        My point with all of this is that the ERMI and HERTSMI are useful, but in limited ways. Besides what I’ve demonstrated – that even a “safe” home can still have issues – there are also outdoor considerations that may be affecting you. I don’t mean to make you feel “unsafe”, but instead hope that our experiences illustrate a way for you to find wellness, too. We’re getting better, feeling a lot better, and working on rebuilding both our home and our health.

        • Hi Kim,

          Wonderful comments. I’m a 11-3-52b and from my perspective, I think your comments paint a realistic picture on what to expect regarding recovery. Also, your point regarding the limitations of ERMI and HERTSMI-2 are well taken. I’ve been in a friend’s home with an ERMI of -0.57 (less than zero) and a HERTSMI-2 of zero and it was a toxic soup – Stachy growing on the air-conditioning A-coil, over 50 square feet of Aspergillus in the attic, and a crawlspace full of mold! The house was not cleaned often and this gets into the “dirt factor” I discuss in Mold Testing.

  21. Thank you so much for such an eye opening article!! Could you please address the effect of mold and biotoxins on egg quality and healthy pregnancy. Does it affect the DNA of primordial follicles? I haven’t been able to find any proper info on this aspect. I’m really worried.

    • The fact that you’re asking these questions means you’re going to be a great Mom once you decide the time is right!

      In Dr. Shoemaker’s FAQs he writes, “We do not have adequate data on the impact of inflammatory response syndromes on fetal health but there is clear evidence that there can be developmental delays and learning disabilities present in children conceived in a moldy environment and carried to delivery in a moldy environment.”

      In “The Fungus Link Series” by Doug Kaufmann, he mentions that Candida (yeast is a type of fungi) can cause issues with menstruation, impotence, and infertility.

      Numerous animal studies show that “Mycotoxicoses are animal or human diseases caused by mycotoxins (mold toxins) ingestion, inhalation or skin-contact. The effects of mycotoxicoses in animals are diverse, varying from immune suppression to death in severe cases.” Abortions in animals can be caused by mycotoxins.

      The bottom line is it is very important to be in a mold free place (see Mold Testing), and if you have CIRS I would strongly encourage you to heal your body first. Dave Asprey’s Better Baby Book is a good read not only because Dave is all about mold but he does a nice job talking about the importance of detoxing prior to becoming pregnant so this burden isn’t passed onto your baby.

      Best wishes.

      • Thank you sooo much!! I’ll be reading it for sure. I already feel more hopeful!

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