Toxic Mold: Questions and Answers
I'm sick. How do I know if I'm sick from toxins in a water-damaged building?
Mold Warriors' careful scientific definitions will help you figure out whether you have the symptoms of neurotoxic illness. An included series of biological markers—including the gene susceptibility HLA DR test and the visual contrast sensitivity (VCS) test—will also help you sort out whether the illness could be related to mold toxins, such as from exposure to water-damaged buildings. The VCS test has been used for 40 years to assess the potential for exposure to biologically produced neurotoxins. Also, evaluating your specific lab tests will help you and your physician confirm the diagnosis. These labs include hypothalamic hormones, MSH deficiency and abnormal regulation of pituitary hormones, antidiuretic hormone and concomitant measure of osmolality; ACTH and simultaneous cortisol, VEGF, cytokines, complement and measurement of MMP-9.
How do I know if the mold growing on the ceiling in my living room is dangerous? Same question for the mildew on my books?
Sampling molds is incredibly easy. Making a "tape-lift," rubbing a piece of clear Scotch tape over the mold, is the first step. Send the tape to a reputable lab for identification. P and K Microbiology charges $35 for the service. Contact your physician to find out more details, as most labs won't accept samples from patients.
How will my doctor know if I'm sick from neurotoxins?
You will have many health symptoms, VCS deficits and abnormalities in labs from the Biotoxin Pathway. Any physician can order the lab tests and look for the markers that will diagnose neurotoxic illness. If you meet the diagnostic definition and your exposure is simply to mold, then treatment is begun with chole- styramine. If you have Lyme disease, you'll need antibiotics first, and then pretreatment with Actos before cholestyramine is begun.
Is the mold illness contagious?
No, exposure is necessary.
I took CSM for my neurotoxic illness but I'm not any better. Why not?
Cholestyramine (CSM) therapy is just the first step in a series of steps that are followed sequentially. Do one intervention at a time! All biotoxic illness patients, for example, follow one month of CSM therapy before beginning the second step. If there is a biofilm-forming, multiply antibiotic resistant coagulase negative Staph colonizing your nose, that organism must be eradicated. If there is auto immunity present, those complicating factors must be identified and changes initiated. If there are reductions of levels of VEGF, that also needs to be identified and treated. There are some people, especially those with 4-3-53 and the 11/12, 3-52B genotype, who frequently won't get better. We're using new therapies for these patients and hope to have results to report shortly.
My doctor said the blood tests Dr. Shoemaker recommends are too expensive and too new. What should I do?
The tests aren't new; they have been in use for a long time. The blood tests that we use are standard in commercial laboratories and insurance reimbursable. The illness that you have has already defied diagnosis, and the standard tests used, such as a CBC or simple metabolic profiles, don't show any abnormalities. The blood tests listed at the end of this book will profile your illness and show you what's wrong. In fact, not doing those blood tests and not knowing what's wrong is what's really too expensive!
I took the VCS test online but my doctor doesn't know how to read it.
The eye test available at this link http://www.chronicneurotoxins.com is a screening test; it's designed to assess your potential for exposure to biologically produced neurotoxins. The test itself does not diagnose the illness; what we're looking for is the presence of a distinctive number of errors that will signal to your physician that additional work up is necessary. You can sign up for an interpretation of your VCS test at the chronicneurotoxins website.
How can I best individualize my neurotoxic illness treatment?
Every patient has a unique illness profile. Do the complete symptom recording, VCS and labs to profile your illness. Although biotoxin illness causes common problems in people, ultimately, like a tailored dress or suit, your treatment will be unique.
A lot of my co-workers are sick but their doctors say the problem is allergies and fibromyalgia. How can we tell if it's really a neurotoxic illness?
We've done a number of building studies where we go on site and screen everyone in the building, using visual contrast and symptom questionnaires. If at least 25% of the patients have the distinctive pattern of Sick Building Syndrome symptom abnormalities, then we do some additional testing. If there are correlations between visual contrast deficits and those with symptoms, the likelihood of neurotoxic illness exceeds 90%. The laboratory tests will profile and define the illness. The best way to know if there really is a problem in the workplace is to follow the 5-step repetitive exposure protocol. When one person is ill, we call him a complainer; two people working in the same area is a conspiracy; and three a cohort. Find a couple of buddies to go through the battles with you; the action can get rough.
I find myself unable to follow your suggestions. I just cannot follow through as I could have done 10 years ago. What should I do?
These illnesses are chronic; they don't leave on their own. There's no question that proper approach to treatment requires discipline, time and personal commitment. If you're not able to take medication, there's no way you'll improve. I suppose it's not necessary to understand the illness, but without understanding, the patient doesn't have the "power" to control his own health as much as possible. Cognitive issues are almost always present in the illness. Ask family or friends to help you, take Mold Warriors to your physician for help, or contact firstname.lastname@example.org or email@example.com
What can I do if my doctor is unable to read my HLA results?
At first glance the HLA wording is difficult to grasp. But we're very excited to offer a special key -- Follow the Rosetta Stone in the appendix to help you interpret HLAs and sort out which genotype you have. After you've done a few of these, it'll seem like second nature.
I filed a lawsuit against my landlord because of mold, but my attorney said he was worried about the strength of testimony from defense medical experts, so he didn't want to bring a personal injury claim. What can I do to strengthen my case?
You'll run up against a seemingly unbeatable array of experts routinely hired by insurance companies in court cases. Fear not. The strength of your case is based on documenting your illness with symptoms and lab markers; the most unbeatable evidence is your response to treatment and re-exposure in the 5-step repetitive exposure protocol. As long as those who testify against you aren't treating physicians and have no knowledge of this illness, you certainly can be shown to be right.
I improved when I took CSM, but my MMP-9 stayed high and I still have many neurologic abnormalities. They said I had MS, then Parkinson's and now they don't know. What advice do you have for me?
I hope that you were able to document your lab abnormalities before you started on therapy. I hope that we know what your potential for exposure is. If the problem is simply elevated MMP-9, I would strongly suggest that you also have a test of myelin basic protein (see Chapter 14) to understand better what the MMP-9 is doing in your brain. If MMP-9 alone is your problem then simply using the no-amylose diet and taking Actos will quickly lower that level.
What proof do you have that mold causes CFS?
Direct patient care and multiple studies. In my referral practice, I often see people with a prior diagnosis of chronic fatigue syndrome. Many of those patients have an illness that's simply caused by mold in their basement, bathroom and/or attic. The problem here is that when a diagnosis of chronic fatigue is made according to CDC guidelines, no biological markers were used and no exposure histories were recorded. By expanding what we understand about chronic fatiguing illnesses, eventually we'll show that true chronic fatigue syndrome has multiple causes, one of which is mold.
Why do you attack the CDC and consensus panels of medical experts repeatedly, just like you did in Desperation Medicine? Why don't you think the CDC acts in our best interests?
The CDC is one of the strongest federal organizations with a huge influence on current public health thinking and medicine. My conflict with the CDC is I see that much of the extraordinary work done by their excellent research scientists is then "spun" by managers whose priority is CDC image, or merely a concern about appearances and public opinion. The CDC isn't an organization that will take the initiative readily, unless there's a clear public health mandate. It's clear the CDC is failing to act to defend the public in mold illness, Lyme Disease and Chronic Fatigue Syndrome. And that's a national disgrace.
I have one of the "dreaded" genotypes and low MSH, but I don't feel ill. What advice do you have for me?
We'd probably like to include you in our study of people we're following to see what affects future symptoms. MSH deficiency alone doesn't create symptoms. MSH controls the innate immune responses. Clearly, with your high susceptibility, exposure to biologically produced toxins puts you at a tremendous risk to develop illness, because you don't have the protection from MSH. It's been our experience that patients who have low MSH and the dreaded genotype need to be treated rapidly if biotoxin exposure occurs. So I would suggest that you have frequent testing to assess your health status, especially VCS, C3a and MMP-9.
Why are MARCONS difficult to eradicate?
Most of theses organisms make biofilms, which are near-im- penetrable barriers for antibiotics to cross. Also, their presence reduces our white blood cells' ability to leave mucus membranes and attack these colonizing organisms. This community of organisms' capability to rapidly make antibiotic resistance factors is extraordinary. The new age in microbiology must take into account biofilm formation and how it affects human illness.
Are other physicians treating mold the way you do?
Fortunately, yes, we have a large number of physicians who are using my protocols and beginning to collaborate. It won't be long before we have national standards from treating physicians that would lead the way for those in academia who have scientific credentials, but limited access to primary care in biotoxin illnesses. The biggest shift in physician attitudes is likely to follow the beginning of legal actions against treating doctors for failure to diagnose.
Why is VEGF deficiency a major problem for your patients who don't show improvement?
VEGF controls delivery of oxygen and nutrients in capillary beds. Cells that aren't receiving necessary increases in oxygen and nutrients don't function normally. Please see Chapter 17 for the additional discussion about the incredible importance of VEGF. It's necessary to measure a VEGF level repeatedly to follow treatment.
Autoantibodies are a big deal in your Biotoxin Pathway, but they also occur in people without biotoxin illnesses.
The presence of an autoantibody in your blood doesn't necessarily mean you have an autoimmune illness. The blood test is just a part of a clinical evaluation. The study of autoantibodies is still an emerging part of medicine, and we're only starting to explore why biotoxin patients commonly have significant auto- antibodies. Even basic autoimmune issues are still unclear. For example, science doesn't yet understand how people develop antibodies to gliadin, a protein found in gluten, which is not part of our "self," yet ends up being treated as "self" by the immune response.
My blood tests show all these antibodies -- IgA, IgG and IgM --- to fungi. My doctor says these tests help him diagnose and treat.
Be careful with the analysis of antibody tests. Changes in antibody levels have been thought to be helpful in many illnesses, but that idea has never been confirmed. For example, antibiotic therapy bears no clear role in antibody levels in Lyme Disease.
Why am I now so sensitive to various chemicals, perfumes, petrochemicals, inks, fumes from computers and copying machines?
So-called Multiple Chemical Sensitivity (MCS) is still a commonly seen clinical condition without much in the way of a confirmatory diagnostic literature. I have treated more than 500 patients with MCS, and have developed the condition myself, but I still haven't found anyone with MCS who didn't begin their illness with mold exposure. My illness responded nicely to medications; many don't. Following a long recent discussion with Dr. Martin Pall, we're looking at changing levels of cit- rulline, an amino acid made when nitric oxide interacts with another amino acid, arginine, after an exposure adequate to initiate MCS symptoms. If we're able to create MCS symptoms, it could implicate changes in nitric oxide metabolism in MCS patients. But no one knows why MCS occurs.
Why do so many school kids get nosebleeds after they're exposed to mold?
This is a difficult question to answer, since noses bleed after many common events. If you watch people in a car, waiting at a stoplight, you'll routinely see men pick their noses and women fluff their hair. Kids in a classroom are always at their noses. So nosebleeds, commonly caused by nasal irritation and nasal trauma, both from humidity and contact, are a common event. In a group of People Who Denied Nose-Picking, With Unusual Bleeding, including nosebleeds, after mold exposure, we have found hy- peracute changes in C3a affecting changes in clotting. We don't have the number of kids studied before exposure to answer the question, "do physiologic responses to mold/mold toxins cause nosebleeds?" properly yet. But we're working on it.
If I'm exposed to mold and sick from it, what's the first thing I should do?
Plan to get out before it's too late! If you remain sick after you're no longer exposed, don't be surprised. That's a marker for toxin illness.
I'm planning to spend thousands of dollars to remediate my home. Is this a waste of money?
Often it is. Remediation should mean removal of all sources of biotoxin illness. That's often impossible. Make sure you have some back-up financial protection in case you get sick with re-exposure to your "remediated home." Since merely leaving a fraction of spores or biotoxins behind can make a home "sick," many find their remediation was unable to prevent a return of their illness.
For additional information and a copy of Mold Warriors, go to www.moldwarriors.com, which is the source of these comments by Dr. Shoemaker, along with other material.