If you believe you’re suffering some of the chronic symptoms caused by mold exposure, you’ve probably also heard the discouraging mantra, “We can’t find anything wrong with you—all your tests are normal.”
You’ve told your doc that you’ve read about toxic mold. You point out that you’ve had some water damage, that some rooms smell different than others, and that, overall, you feel better when you leave. In fact, you felt almost normal when you went on a long vacation.
You now face two challenges:
- Your doctor thinks that toxic mold illness is just the latest fad diagnosis, like chronic fatigue or chronic Lyme. He believes that, really, you’re just depressed. You’re justifiably disappointed and maybe even angry when he hands you a Prozac prescription and the card for a psychotherapist. Since the entire visit was over in less than 15 minutes, you wonder if he heard anything you said.
- Your doctor has heard of toxic mold, but has no idea what tests to order. She figures you must be allergic to mold, so she sends you to an allergist. His eyes glaze over when you try to explain your symptoms are not allergic (sniffling, sneezing) but more systemic (brain fog, fatigue, widespread muscle aching, headache, light sensitivity–see full list below).
The allergist is pleasant enough as he does a series of scratch tests or tests your blood for antibodies produced by a variety of mold species. And yes, people certainly can have a true allergy to mold. If your scratch test or blood tests are positive, the allergist may suggest antihistamines, steroid nasal sprays, or desensitization (allergy shots). He’ll also recommend consulting a mold remediation company (about which more below) or getting a dehumidifier.
Understand that these steps may help your mold allergy symptoms, but are ineffective for the chronic systemic symptoms you’ve been experiencing.
Mold allergy is not the same as mold illness
Your system-wide symptoms are caused by a second mold-related illness called mycotoxin toxicity, which has triggered your body into a state of constant, low-level inflammation.
Here’s what’s happening: Any of several species of common mold excrete toxic compounds called mycotoxins. These enter your body, which responds to the assault by generating an inflammatory response. Inflammation in the right place and for a short period of time is one of the many ways our bodies heal themselves. Think of the redness and swelling around a cut that heals completely in a few days.
But mycotoxins trigger widespread constant inflammation, called chronic inflammatory response syndrome (CIRS), and a variety of seemingly unrelated symptoms. When you read about CIRS, the article usually concerns toxic mold or chronic Lyme disease.
CIRS occurs only in about 25% of people exposed to mycotoxins, but those 25% can be miserable. Why just a quarter of us? Because only 25% of the population has the genetic make-up that renders them susceptible to mycotoxins. Specifically, if you carry a gene on Chromosome 6 called HLA (human leucocyte antigen) subclass DRB1 then you are among those most susceptible to mycotoxins.
You’ve probably read about sick building syndrome, in which (usually after water damage) some people become quite ill while others feel fine. The 25% rule applies again.
Here are symptoms of CIRS/toxic mold disease
- Fatigue and weakness.
- Headache, light sensitivity.
- Poor memory, difficulty finding words.
- Problems concentrating.
- Morning stiffness, joint pain.
- Unusual skin sensations, tingling and numbness.
- Shortness of breath, sinus congestion, or chronic cough.
- Appetite swings.
- Problems regulating body temperature.
- Increased urinary frequency or increased thirst.
- Red eyes, blurred vision, sweats, mood swings, sharp pains.
- Abdominal pain, diarrhea, bloating.
- Eyes tearing, disorientation, metallic taste in mouth.
- Static shocks.
- Vertigo, feeling lightheaded.
It’s coming from inside the house
Now let’s say that, unbeknownst to you, the sick building is your own home. You’ve been seeing doctors because you feel chronically bad with the disparate symptoms listed above, but nobody can find anything wrong with you. People living in the same space with you all feel fine. Some rooms in your home smell a little moldy, but since you’re the only one who feels ill you don’t make a connection.
But whether you call it toxic mold disease, biotoxin illness, sick building syndrome, or chronic inflammatory response syndrome (CIRS) makes no difference. They’re all the same culprit.
In people fighting chronic Lyme disease, CIRS is the villain, too. That’s because CIRS can have different triggers (mold species, Lyme), but the same systemic inflammatory response.
Diagnosing CIRS/toxic mold disease
Diagnosis is fairly straightforward once you and your doctor are aware of the facts.
- First, is there mold present in your home? Do you have a history of water damage to your home? Do certain rooms have a moldy smell? Do you feel better in some rooms than others? Do you feel better when you leave home altogether? If you think it might be mold, you can buy a home test kit online or at Lowe’s. You’ll need to mail the air filters back to the lab for testing. At $35 each, it might be easier and more cost-effective to hire a professional inspection service.
- Second, if your mold test results from the allergist are positive, be sure to differentiate mold allergy from toxic mold/CIRS. Your primary care doctor can order an IgE Mold Panel to determine if what you have is simply a mold allergy. If you have positive test results for a mold allergy, you can purchase a dehumidifier and an air cleaner. If needed, you can also use an antihistamine, like Zyrtec or Xymogen’s AllerDHQ (available at our Natural Apothecary). If you have asthma symptoms, use an appropriate inhaler.
- Third, if your test results from the allergist for mold allergy are negative, make sure you also get tested for Lyme disease, since the symptoms can overlap.
- Fourth, if, based on testing, you’ve got a moldy house (or even one moldy room) and you think mold toxicity/CIRS is causing your symptoms, you’ll need several tests to determine if you have CIRS. These are available from your primary care doctor using regular labs, like Quest and LabCorp. You may have an uphill battle trying to get her to order these tests, most of which she’s probably never heard of. You’ll likely hear, “Can’t you just stay off the internet?”
Here are the tests:
- Melanocyte stimulating hormone (MSH) This a hormone that controls inflammation and is low in 95% of CIRS patients.
- C4a is a marker for inflammation, and high levels of it can be very helpful in determining if CIRS is present.
- Vasoactive intestinal peptide (VIP) is another hormone that is low in people with CIRS.
- Vascular endothelial growth factor (VEGF) is a substance that makes new blood vessels. Low levels of VEGF are common in mycotoxin illness.
- HLA DQ/DR genes: 95% of mycotoxin illness patients have this genetic susceptibility, discussed earlier, which means if your test results for this are negative, it’s unlikely you have mycotoxin illness.
Next week: So your home tests positive for mold and your systemic inflammation is high. What next?
David Edelberg, MD