Medical Tests Related to Toxic Mold Poisoning
Here is some information about various kinds of tests related to whether individuals are being affected by mold illness.
1. One kind of test panel is the one that Dr. Shoemaker has developed. It includes a number of measurements related to inflammation and immune responses. This includes measurements of various cytokines (such as MMP-9 and TNF), since that kind of inflammation seems to be related to toxic mold illness. It also includes measurements of various hormones (such as MSH, cortisol, leptin and ACTH), since those are thought to be affected by the presence of the inflammation and other negative effects brought about by toxic mold. Measurements of complement elevations (C3a and C4a) also are included, since those are thought to be related to current acute toxic mold exposures. VEGF, which is a chemical signal directing growth of new blood vessels, is also part of the panel. The HLA-DR genetic testing, which Dr. Shoemaker says that he has observed to be strongly correlated with toxic mold illness, also is included on the panel.
These tests still are unfamiliar to many practitioners, but seem to be gaining acceptance. To my knowledge, Dr. Shoemaker has not published any papers verifying their reliability or usefulness. They are described in detail in Dr. Shoemaker's book "Mold Warriors" and on his website at
www.biotoxins.info.
2. Also on his website, Dr. Shoemaker makes available a test that he calls variously the VCS (visual contrast sensitivity) and the BIRS (biotoxin illness risk score). This is an eye test of visual contrast, which he states is a good detector of the presence of neurotoxins of whatever sort (not just biotoxins) in the brain. It can be completed online and serves as an initial screening device.
My own personal experience and observations suggest that this is a useful screening device, but that it doesn't necessarily do a good job in ruling out mold illness in CFS sufferers. When I was living in my moldy house, I indeed did terribly on the VCS. At that point, my vision has declined to the point that everything looked dim and I could barely see anything to read inside. This was scary!
During the couple of months after I moved out of my moldy house, my vision improved to the point where I could pass the VCS. I felt a bit better, but was not even close to being well. It only was after I visited Erik for a week and got really clear (and then started this ridiculous "extreme mold avoidance" thing) that my health really recovered.
Most of the time now, I can pass the VCS. Sometimes, especially after I've had a good bit of mold exposure, I fail it.
Dr. Shoemaker says although people who aren't suffering from biotoxin illnesses (which also can include things like chronic Lyme, dinoflagelites and brown recluse spider bites) shouldn't fail the test, those people who are having problems sometimes can pass it.
The idea that I can pass the test even though I'm being affected by small amounts of mold toxin is consistent with one hypothesis about the role that toxic mold plays in this illness. Certainly, significant amounts of the neurotoxin itself (enough to affect the vision) can be present in CFSers who are suffering from mold illness. However, a hyperreactivity of the complement component (C3a and C4a) seems to be a more fundamental part of the problem, just as it is in people who suffer from peanut "allergies." This is more related to what the body does to itself when it senses the mold toxin than to the direct effects of the toxin. Why the body is going nuts when it senses tiny bits of this stuff is, in my mind, a key question that we need to answer about the disease.
Interestingly, the C4a responses has been mentioned in other research related to CFS. I'm going to post an abstract related to that topic below.
I certainly think that it's a good idea for CFSers to take the VCS. On its own or in combination with the ERMI, it can provide substantial information on whether people are living or working in really moldy buildings.
That's important to know, so that the problem can be addressed if so. No one should be living in a sick building. That's especially the case for anyone with an illness that affects the immune system, regardless of whether we think that mold might be a "cause" of that illness.
However, passing the VCS should not be taken to provide conclusive evidence that mold toxicity is not a factor in an individual's illness. It is only a first step.
3. Another kind of test is an allergy test panel. Here we are talking about allergic reactions to toxins, not to their poisonous effects. Still, I have heard of people using them for cases of mold toxicity illness, so I will discuss them.
One measure is the IgE tests to different species of mold. These measure allergic reactions, which result in symptoms such as watery eyes, runny nose and asthma.
This is not useful for the purpose of measuring mold toxicity, because this is not an allergy. In my case, even though I appear to be suffering from the negative effects of toxic mold, I do not have any allergic symptoms of mold at all.
A second component of this test is the IgG. This apparently measures the extent to which people have been recently exposed to various species of mold.
As it was explained to me, the rationale for the use of this test is to try to determine the extent to which various molds are present in the person's usual environment. If the IgG to Stachybotrys comes up high, it is thought to mean that the person's home (or other area where s/he spends time) has a Stachybotrys problem.
This does not mean that the person is being affected by the particular mold, though. Some people appear to be able to get a very large amount of exposure to these molds and not suffer from any apparent ill effects at all.
Having a low IgG does not mean that the person is not being affected either. Again, it is our contention that for some of us, even small amounts of exposure (apparently triggering complement to go ballistic) are enough to keep us sick.
The potential usefulness of the IgG is to serve as an environmental test, since the tests that remediators use (air tests, ERMI, tape lists) are so unreliable. I don't have enough data on the accuracy of the IgG for this purpose to say whether it actually provides good information.
4. Another type of test is the one that Gerwyn mentions in this thread (May 5, currently post #99). This is a test that shows whether various molds, including toxic species such as Aspergillus, have colonized the body. In this case, the molds are serving as pathogens (like a bacteria would). Insofar as the molds continue to produce toxins while living in the body, this would be contributing to any toxicity problem present.
It's my impression that this sort of test is reliable. However, the colonization of individuals' systems with these pathogens is only one part of the problem. We also are affected by the toxins that we take in just by breathing them in. One toxicologist (Dr. Jack Thrasher) told me recently that these toxins appear to have the ability to go straight up the olfactory nerve and into the brain, totally bypassing the lungs or bloodstream.
Stachybotrys, which is possibly the most problematic toxic mold for CFS sufferers, very rarely can get any sort of a foothold in the body. Aspergillus does so more frequently, especially in people who are already immune compromised. It tends to cause sinus infections and lung problems. These types of problems often are attributed in CFS sufferers to infections with candida, bacteria (such as chlamydia pnemoniae) or mycoplasma. Considering the idea that they might be related to Aspergillosis or other mold colonization, especially if mold in the home is suspected, may be warranted.
I actually had a lung problem, with mild-ish pneumonia-like coughing, during the couple of months before I found out about the mold in my house. It went away within a couple of weeks after I moved out. One hypothesis is that immune defects resulting from mold toxicity make Aspergillosis more likely to occur. Of course, other immune problems from CFS also could contribute to its presence.
5. There also is a panel of tests that measure the presence of various chemicals, including various mycotoxins, in the bloodstream. These tests are used frequently by various environmental specialists, such as Dr. William Rea.
This kind of test was originally designed to assess the presence of manmade chemicals, as might occur from industrial exposures to solvents or pesticides. They then were extended to measure mycotoxins.
One issue here is that toxic molds make a whole variety of chemicals. We don't have enough knowledge yet to be able to say for sure which ones are particularly bad.
Another issue is that the body tends to sequester mold toxins and other chemicals in the fat cells rather than in the bloodstream. The amounts in the blood thus may be misleading.
I don't have enough information about these tests to gauge their accuracy. From what I've heard, people who have environmental exposures to most chemicals tend to see their blood levels gradually go down if they get away from the environmental exposures and engage in active detox. The levels of the mycotoxins seem more likely to stay stubbornly elevated.
Everything I run into suggests that there's something weird going on with the mold compared to all other substances. I wish I understood better what it is.
6. The test that Dr. Myhill suggests ("you'll have to go on holiday") and that Erik has long advocated ("the Godforsaken wilderness" sabbatical) discussed above are designed to help individuals determine how much of an impact small amounts of toxic mold are having on them.
The test needs to be done carefully in order to yield a useful result though. Because CFSers are affected by such small amounts of mold, staying in a bad building, a bad region or amidst bad belongings (or other objects) can make it seem that toxic mold is not a problem even when it actually is.
If the test is done right though, it provides much more convincing results than any of the lab tests. Only two weeks after moving out of my moldy house and four days after putting aside my belongings from the house, I found that I couldn't go back into close proximity with those items without feeling ill. Washed clothing made my heart beat fast. Putting my hand inside my purse caused a painful burn that lasted for a week. Putting on my heavy coat made me have to stop by the side of the road to repeatedly vomit.
This is what Dr. Rea calls "unmasking." Interestingly, CFSers talk about it with regard to food allergens all the time---e.g. needing to stop eating wheat in order to figure out that small amounts of it cause a problem. Considering that toxic mold is inherently a "worse" substance for people than is "wheat" (consumed by the majority of the population with only positive results), the idea that the former may be causing problems that are at least as bad as the latter at low levels does not seem that unfathomable of a concept. Just an unfamiliar one.
In general, practitioners seem to be moving more toward using Dr. Shoemaker's panel of tests (including the VCS) to assess mold illness. For CFSers, the "Godforsaken wilderness" one (perhaps in combination with Dr. Shoemaker's panel) seems to work best. The others seem to be more useful for particular situations rather than for the diagnosis and monitoring of mold illness in general.
If you have any other questions, please let me know.
Best, Lisa
