My Toxic Mold Illness Diary: February 3

Last night, despite being so, so fatigued, I didn’t sleep. At. All. None minutes. Zero. ūüôā The body aches can make it difficult to find a way to¬†get comfortable. I toss and turn and plot my revenge on black mold.

Some friends have told me I should invest in a Tempur-Pedic. They think it would make a difference for me. I don’t know whether it would as I’ve never slept on one. Currently my 6’6″ husband and I have a California King Sleep Number bed. Although he loves it, it’s not working for me. Going to bed is something I have to do… not something I look forward to doing.

If you have a Tempur-Pedic and you have an opinion of how great it is (or isn’t), I’d love you if you¬†would share.

In any case, I’m back in my uncomfortable bed and it’s only 4:14PM. ¬†I’m on top of the covers so it doesn’t count, right? I have soup in the crock-pot and needed to get away by myself and blog. I have my trusty Bose headphones… which are the best thing ever. They get rid of all the noise “out there” and let me sort of go away to my own little corner of the world. (I sound like I’m writing an ad for beds and headphones.)



Something is really bothering me, and my Mister is equally bothered… if not more so. We are reading all the posts in the Facebook group and again and again we see how many hurting people just cannot afford the urine test from RealTime Lab to look for mycotoxins.

It’s understandable. Most of us have spent our own little fortunes on doctor after doctor, test after test, medicine after medicine. Now, finally, we have something that holds out hope to us as the possible (perhaps probable) cause of all the suffering and it’s hard to figure out where another $700 is going to come from.

No one should feel ashamed about that.

RealTime Lab is working so hard for us, and I love the way they’ve treated me… and all of you who tell me you’ve reached out to them. They are a beacon. We can’t expect¬†that it’s somehow their responsibility to test the world for free. On the contrary. I want them to continue to have the funds necessary to do whatever can be done to help people like you and I get better.

So, it begs the question then, what can we do to help people who need this test and can’t get it? Mister and I are tossing around ideas and I’d love to hear yours. When I held the results of that test in my hands and saw in black and white what was wrong with me, it was one of the most liberating moments of my life. We want to do all we can to make sure every one of you who is in a dark place now can experience that same liberation.

Nothing is unsolvable. Let’s figure this out.



Natural Health Advisory: How to Find a Skilled Doctor

If you want to know more about mold sickness and how to find a physician who understands what mold can do to the body, you should really read this article:

Treatment for Mold Exposure: Finding a Doctor Skilled in the Diagnosis and Treatment of Mold Sickness

It covers:

How mold-related conditions are diagnosed

Mold exposure treatment

Finding a doctor who specializes in mold exposure treatment

This is a great blog post to add to your arsenal of information for the all important conversation with your doctor.





Lab Tests For Mold Toxicity

bloodWhy Test?

The laboratory tests are often paid for by insurance companies.  Treating Mold illness can be expensive, but with the right testing you can be more specific in your treatment approach.  These tests are not standard tests used by doctors, but have highly beneficial to Environmental and Mold Literate Doctors. They can help pinpoint how mold has affected you.  Here is a list of labs with codes you can print and request a doctor to order: Shoemaker Labs.


VIP – Vasoactive Intestinal Polypeptide

Normal Range:  23-63 pg/mL

Vasoactive intestinal polypeptide (VIP) is a neuroregulatory hormone with receptors in the hypothalamus.  This hormone/cytokine regulates peripheral cytokine responses, pulmonary artery pressures, and inflammatory responses throughout the body.

Low VIP levels are present in mold illness patients.  This leads to unusual shortness of breath, especially in exercise.  To date, every multiple chemical sensitivity patient Shoemaker has seen (over 500) have had low VIP.  VIP plays a role similar to MSH in regulating inflammatory responses.

With respect to the digestive system, VIP seems to induce smooth muscle relaxation (lower esophageal sphincter, stomach, gallbladder), stimulate secretion of water into pancreatic juice and bile, and cause inhibition of gastric acid secretion and absorption from the intestinal lumen, which can lead to chronic, watery diarrhea.

VIP replacement, when used according to a strictly administered protocol, has proven to be fabulously effective in returning chronically fatigued patients back to a normal life.  Do not use VIP if you are exposed to mold (with ERMI values greater than 2); if you fail a VCS test; or if you have a MARCoNS present in your nose.


MSH – Melanocyte Stimulating Hormone

Normal Range:  35-81 pg/mL

Alpha melanocyte stimulating hormone (MSH) has multiple anti-inflammatory and neurohormonal regulatory functions, exerting regulatory control on peripheral cytokine release, as well as on both anterior and posterior pituitary function.

In mold illness, MSH will be too low in over 95% of patients.  This means increased susceptibility to mold illness, ongoing fatigue, pain, hormone abnormalities, mood swings, and much more.  MSH is a hormone, called a regulatory neuropeptide, and it controls many other hormones, inflammation pathways, and basic defenses against invading microbes.  Without MSH, bad things happen; chronic sleep disorders with non-restful sleep develop, and endorphin production is reduced, so chronic pain follows.


TGF Beta-1 – Transforming Growth Factor Beta-1

Normal Range:  <2380 pg/ml

TGF Beta-1 is a protein that has important regulatory effects throughout innate immune pathways.  This protein helps control the growth and division (proliferation) of cells, the process by which cells mature to carry out specific functions (differentiation), cell movement (motility), and the self-destruction of cells (apoptosis).  The TGF Beta-1 protein is found throughout the body and plays a role in development before birth, the formation of blood vessels, the regulation of muscle tissue and body fat development, wound healing, and immune system function (especially regulatory T-cells).

TGF Beta-1 can impair T-regulatory cell function, which in turn contributes to the activation of autoimmunity, yet TGF Beta-1 also plays a role in suppressing autoimmunity(!).¬† TGF Beta-1 has become important in the exploding incidences of childhood asthma, raising the tantalizing issue of remodeling due to biotoxin exposure.¬† The EPA says that 21% of all new cases of asthma are due to exposure to Water Damaged Buildings.¬† If an individual develops wheezing after exposure to a water damaged building, look for remodeling to be the cause.¬† Remodeling means “something” happens that the airway changes to be more reactive and in need of medications to reduce wheezing.¬† Neurologic, autoimmune and many other systemmic problems also are found with high TGF Beta-1.




Normal Range:  0-2830 ng/ml

C4a has become the inflammatory marker of greatest significance looking at innate immune responses in those with exposure to Water Damaged Buildings (WDB).

The complement system is a group of proteins that move freely through your bloodstream.  The proteins work with your immune system and play a role in the development of inflammation.

Each complement activates inflammatory responses, with spillover of effect from the innate immune response to acquired immune response and hematologic parameters.

These short-lived products are re-manufactured rapidly, such that an initial rise of plasma levels is seen within 12 hours of exposure to biotoxins, and sustained elevation is seen until definitive therapy is initiated.



Lab Tests for Mold Illness – Secrets of Survival

The laboratory tests that are ordered are blood tests done in labs around the world, and paid for by insurance companies.  These tests hold the secrets of surviving mold illness.  The names may be foreign to you, but since they are the things that hold the secrets to Surviving Mold, meet them today and perhaps know them as friends tomorrow.

You don’t need to be an expert to read further, but you should not turn away from learning more.¬† Take the time to learn the language of mold illness and this site will try to make things as understandable as possible.

No one says learning is easy, but that doesn’t mean you can skip the learning process when it’s your illness.¬† Knowledge is power.


HLA DR – Your Genes

(AKA “The Dreaded Gene”)

Human Leukocyte Antigens (HLAs), are found on the surface of nearly every cell in the human body.  They help the immune system tell the difference between body tissue and foreign substances.

The immune response genes are found on chromosome six. ¬†Patients could have two alleles, copies of genes (for each gene, one allele is inherited from a person’s father, and the other is inherited from a person’s mother), out of approximately 10 possible, as part of their genotype. ¬†Based on Dr. Shoemaker’s data, in normal populations compared to international registries of gene frequencies of HLA DR, we know the frequency of mold illness-susceptible patients approximates 24% of the normally distributed population. ¬†Almost a quarter of the normal population is genetically susceptible to chronic mold illness. ¬†Three quarters isn’t.

 Multisusceptible  4  3  53
 11/12  3  52B
 14  5  53B
 Mold Susceptible  7  2/3  53
 13  6  52A, B, C
 17  2  52A
 18*  4  52A
 Borrelia, post Lyme Syndrome  15  6  51
 16  5  51
 Dinoflagellates  4  7/8  53
 Multiple Antibiotic Resistant Staph Epidermis (MARCoNS)  11  7  52B
 No recognized significance  8  3, 4, 6
 Low-risk Mold  7  9  53
 12  7  52B
 9  9  53



Normal Range:  0-19

Antigliadin (AGA) antibodies are produced in response to gliadin, a small protein that is part of gluten, biologically active of wheat, barley and rye.  These antibodies were thought at one time to be specific for Celiac Disease.

Within 30 minutes of ingestion of gliadin, for those with antigliadin antibodies, there will be an inflammatory response.  This inflammatory response can provide many symptoms, including some that mimic attention deficit disorder.    We all know that some kids are labeled as having ADHD because of their abnormal behavior seen within 30 minutes of eating a cupcake.  It is not the sugar in the icing, it is the gluten in the cake.  Antigliadin antibodies are found in over 58% of children with biotoxin-associated illness.



Normal Range:  ACTH Р8-37 pg/mL; Cortisol Рa.m. 4.3-22.4 / p.m. 3.1-16.7 ug/dL

ACTH is a hormone released from the anterior pituitary gland in the brain.  Cortisol is a steroid hormone produced by the adrenal cortex, which is the outer part of the adrenal gland.  The adrenal glands are located on top of both kidneys.

Early in the illness, as MSH begins to fall, high ACTH is associated with few symptoms; a marked increase in symptoms is associated with a fall in ACTH.  Finding simultaneous high cortisol and high ACTH may prompt consideration of screening tumors, but the reality is that the dysregulation usually corrects with therapy.



Normal Range:  31-86 pg/mL

Vascular endothelial growth factor (VEGF) is a substance made by cells that stimulates new blood vessel formation and increases blood flow in the capillary beds.   VEGF is a polypeptide.  Deficiency of VEGF is quite common and is a serious problem in biotoxin illness patients that must be corrected.  If you don’t have blood flow, cells begin starve and don’t work properly.



Normal Range:  IgA Р0-12; IgG 0-10; IgM 0-9

Anticardiolipins (ACLA) are autoantibodies. ¬†Antibodies are proteins in the blood that the body produces to fight off foreign agents. ¬†Antibodies do this by creating an immunity against unfamiliar microorganisms. ¬†Autoantibodies are antibodies that are directed against one’s self. ¬†They interfere with the normal function of blood vessels and react with proteins in the blood that are bound to phospholipid, a type of fat molecule that is a part of the normal cell membrane.

IgA, IgM, and IgG are autoantibodies often identified in collagen vascular diseases such a lupus and scleroderma, and are often called anti-phospholipids.

An increased risk of spontaneous fetal loss in the first trimester of pregnancy is not uncommonly seen in women with the presence of these autoantibodies.  They are found in over 33% of children with biotoxin-associated illnesses.



Normal Range: ADH – 1.0-13.3 pg/ml; Osmolality – 280-300 mosmol

Antidiuretic hormone (ADH), or vasopressin, is a substance produced naturally by the hypothalamus and released by the pituitary gland. The hormone controls the amount of water your body removes.

Osmolality is a test that measures the concentration of all chemical particles found in the fluid part of the blood.

Symptoms associated with dysregulation of ADH include dehydration, frequent urination, with urine showing low specific gravity; excessive thirst and sensitivity to static electrical shocks; as well as edema and rapid weight gain due to fluid retention during initial correction of ADH deficits.



Normal Range:  85-332 ng/mL

Matrix metallopeptidase 9 (MMP-9) is an enzyme that in humans, is encoded by the MMP9 gene.  Proteins of the MMP9 family are involved in the breakdown of extracellular matrix in normal physiological processes, such as embryonic development, reproduction, and tissue remodeling, as well as in disease processes.

It has been implicated in pathogenesis COPD by destruction of lung elastin, in rheumatoid arthritis, astherosclerosis, cardiomyopathy, and abdominal aortic aneurysm.

MMP-9 delivers inflammatory elements of of blood into subintimal spaces, where further delivery into solid organs (brain, lung, muscle, peripheral nerve and joint) is initiated.



Normal Range:  Male: 0.5-13.8 ng/mL; Female: 1.1-27.5 ng/mL

Leptin turns on how tightly the body holds onto fatty acids.  When Leptin is high, one holds onto fatty acids and stores them in fat.  This leads to rapid weight gain, and because of the high Leptin, standard approches to weight loss like eating less and exercising more will fail.  The inflammatory responses that causes Leptin levels to rise lead to patients who are chronically tired, in chronic pain, and forever overweight.

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The Following Urine Test can be ordered through Real Time Labs.

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Mycotoxin Testing 

Mycotoxin Studies: Specimens from the environment (ie. homes, work spaces, schools,  and other areas) are accepted and evaluated for the presence of Mycotoxins (trichothecenes, aflatoxins, ochratoxins).

Trichothecenes are evaluated by using Enzyme-Linked ImmunoSorbant Assay (ELISA).  The test at RTL has been validated as a qualitative test.  Thus, RTL reports whether tricothecenes are PRESENT or NOT PRESENT.

Aflatoxins are evaluated using ImmunoSorbant Columns containing antibodies to the group of aflatoxins (B1, B2, G1, and G2).  Results are reported as PRESENT or NOT PRESENT.

Ochratoxin A is evaluated using ImmunoSorbant Columns containing antibodies to the Ochratoxin A.  Results are reported as PRESENT or NOT PRESENT.

This Urine Test can be ordered through Real Time Labs.

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