My Toxic Mold Illness Diary: February 1

This morning is a rough one and I’m feeling very down. My body is in wicked shape today, and my resolve to tell my story is not what it was. I’m supposed to be healing and I’m sort of getting my ass kicked all over the place.

I’m just a person who has been sick pretty much my whole life and after having found a diagnosis, decided to share what I was told. I thought it might help. I was thinking specifically of the women who are more like me than not like me. I was thinking that if they were feeling, as I was, that my life was ending, I would be wrong not to give them the information I had and let them decide whether it made sense for their situation.

Since that time I’ve received many hundreds of emails, comments and messages. Almost all have been kind, and when I read the stories people are sharing with me, my heart breaks. So many are suffering and feeling so discouraged.

constantexchange

But, there are definitely haters who have set their sites on me and want me to know what a piece of shit I am. You have no idea how bad it can be. This morning, unfortunately, I read a message from a woman who swore at me and called me names and was just as cruel as she could be. How dare I make myself some kind of fucking expert just to get 15 minutes of fame?

I sat here staring at her vitriol and I asked myself why in the hell I would open myself up like this knowing that people like this are in the world and they are happy to use me as a punching bag.

Why are people so angry at me? Is it because I wouldn’t accept the diagnosis of Fibromyalgia as right for me? Why is that so upsetting? I’ve said repeatedly that if the diagnosis of Fibro makes sense for you, I have nothing bad to say. I wish you health above all else and if you are correctly diagnosed with Fibromyalgia and are being helped by your docs and your treatment, then who am I to pass any judgement? I would never presume to tell you that what you know about yourself isn’t true.

No matter WHAT NAME you give the illness from which so many of us suffer, it is real. We’re not crazy. We are suffering in great numbers and the truth is we are largely being dismissed.

And, then there are the people who are angry at me because I posted information about Dr. Shoemaker and his, shall we say, troubling past. They are facts, not stories. As I wrote in my post about him, he may very well have been a pioneer in the field of mold and the way it affects our health. That doesn’t mean we can responsibly ignore information about him that potential new patients should have in order to make a decision that’s right for their situation.

So, yeah. Lots of people hate me this morning and want me to go straight to hell.

When the post went viral, a sweet person contacted me and warned me that the more I spoke about these things, the more I would be attacked. They encouraged me by pointing me to Brene Brown and Why Your Critics Aren’t the Ones Who Count.

So, yeah. I’m sad. I’m hurt. I’m tired. I’m a little scared. But, for not at least, I’m going to keep going. I’m going to keep talking about what is happening to me and hope that the number of people who are helped in any small way outweigh the number of people who think I’m a terrible person.

I guess we’ll see how long I can keep it up.

xo,

Sher

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 Range35-81 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.

 

 

C4a

Normal Range0-2830 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.

 DRB1  DQ  DRB3  DRB4  DRB5
 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

 

AGA IgA/IgG

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.

 

ACTH/Cortisol

Normal Range:  ACTH – 8-37 pg/mL; Cortisol – a.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.

 

VEGF

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.

 

ACLA IgA/IgG/IgM

Normal Range:  IgA – 0-12; 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.

 

ADH/Osmolality

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.

 

MMP-9

Normal Range85-332 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.

 

Leptin

Normal RangeMale: 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.

Courtesy of http://www.survivingmold.com/diagnosis/lab-tests

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

Courtesy of  http://www.realtimelab.com/environmental/mycotoxin-testing

Mycotoxin Testing 

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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.

Courtesy of  http://www.realtimelab.com/environmental/mycotoxin-testing

 

This is what you need to know about my illness

Since my diagnosis a couple months ago, I’ve been thinking a lot about what I would most want people in my life to understand about my toxic mold illness. Throughout my life I’ve always been “the sick one,” and I suspect a lot of people are going to identify with that label. That’s meant I’ve heard more than my share of the things people say when they really can’t understand what’s going on.

It’s not their fault.

If I had been missing a limb most of my life, most of the people around me could have totally understood in some small way. “Damn, Sher. It sucks that you don’t have a right arm. I can look at you and immediately put myself in your position and empathize about what that might be like.”

This toxic mold illness is a silent monster and so I get that it’s harder for people to understand.

Today I am talking directly to them… the people who are okay and healthy and can’t figure out what’s really going on with me.

Dear Darlings,

First of all, I’m not mad. I have no right to be. How can you understand how I’m really feeling when I look pretty “normal” and the words I use to describe what’s happening are so vague?  If you are important enough to me that I care what you think, it’s my responsibility to bring you into this with me, show you what it feels like, and teach you how best to help me.

That’s what I’m doing now. If after reading this you have questions, I’m happy to answer them. You matter to me and I know I matter to you. Talking about this makes sense, and I love that you are willing to do that with me.

This is what it feels like to have a toxic mold illness. | www.ToxicMoldIllness.com

I am fatigued.

I’m not “tired, ” nor am I “sleepy.” When you say things like, “you’re tired again,” or, “you should go to bed early and get more rest,” it’s hurtful. That implies there is some action I could easily take to resolve how I’m feeling and that I wasn’t even intelligent enough to figure it out until you mentioned it.

Imagine that you are lying on the floor of your bedroom when someone walks in and finds you there. The person who finds you mistakenly believes you are dead, and so they call a long, dark van that scoops you up and takes you to the morgue. Although you’re alive in your body, you can’t cry out to let someone know you’re not dead.

Lying on a cold, steel table, you realize that a tube has just been inserted into the bottom of your foot, a machine has been turned on, and you can very slowly feel the blood leaving your body. You feel heavy and empty and even if you wanted to run away you no longer have the energy to sit up. You’re dying now, but instead of a dramatic, lightening bolt experience, it’s slow and quiet and you have to lie there alone as it happens, unable to stop it.

THAT is what my fatigue feels like. Every day. It’s important you hear that. That is my life every single day. It never goes away. I am always on the table and the silent embalmer is always doing his job. It is, by far, the worst part of my illness.

I am always incredibly heavy and weighted down, and whatever it is inside me that makes me, “Me,” is being emptied. I have to think about any steps I want or need to take and decide whether the fatigue I’m going to experience is worth what is on the other end. I don’t have to do anything to cause it. It’s just always there. Rest doesn’t help. Sleep doesn’t help. And, if you tell me that I simply need to get up and exercise in order to feel better, you should know that I can’t.

Of course I want to. Of course I know I need to. I can’t. I physically cannot take one more step than is necessary because once I do, I will not recover and my body will not restore.  I will remain diminished. When you go for a walk your body will restore. Mine will not.

The fatigue dictates my life, what I can do, what I will do, and how I respond to the people in my life. I often think at night that if my house were to go up in flames I would pray that either adrenalin would kick in or someone would carry me out because I would be unable to make it to safety on my own.

The fatigue is the thing that makes me think I have no reason to live sometimes.

I’m in pain.

It doesn’t stop. Sometimes it’s a livable pain and sometimes it’s a pain that makes me think I would do anything to make it stop. If you’ve ever had the honest-to-God, high-fever, freezing-shaking, flu… you understand what my pain feels like. It’s deep in my muscles and I can’t get relief for more than a little while.

I’m stiff.

It feels like someone has put a form of cement in my joints. Nothing bends easily. Sometimes my joints are sore to the touch, and other times it’s all internal. Driving is a challenge because it’s so hard to turn my neck to look for oncoming traffic. Stairs are a nightmare. Getting up and down from chairs is awful.

I forget things.

I will repeat myself and I will ask you to repeat yourself. I’m sorry. I know it’s a pain in the ass to try and have a conversation with me that is remotely enjoyable, but I’m trying. Please don’t get frustrated with me and remind me that you have already told me something three times.

I do weird shit.

If you see me clawing at my arms until they bleed, it’s because the nerve endings can make them feel like fire ants are walking on my bone. It’s an itch that is below the surface and it hurts.

Things that smell normal to you can smell foul to me. I may ask that you not eat that delicious sausage while I’m in the room because I’m made nauseous by the aroma. I may tell you I smell something rotten in the house, even though no one can smell it but me.

I might ask that you read things for me because the letters jump around and my eyesight is deteriorating so rapidly that I can’t see it. I also have difficulty processing and retaining information, so having you read it and explain it helps me.

I may be nauseous a lot because I have taken so much Ibuprofen and Tylenol that I have destroyed my stomach lining. Yes, I know a piece of bread is bad for me. I’m going to eat it anyway because it’s the only thing bland enough going down and soft enough coming up.

I fall down. I run into things.

I have bruises and bumps because I can simply walk across the floor and injure myself. I bob and weave like I’m drunk sometimes and parts of my body “go to sleep” so that I may not be able to tell where I’m planting my foot or where my arm is in relation to a piece of furniture. If you’ve had a limb fall asleep, you’ve experienced for a few moments what I feel virtually every day.

Sometimes it’s one spot on one leg. Sometimes it’s both arms. Sometimes it’s one side of my face. It doesn’t go away when I shake it or move it around, the way yours does. It comes on when it wants and it goes when it wants. The fear of it happening makes me cautious about being in public places alone.

I fake it.

That’s right. I fake the hell out of feeling okay very, VERY often. I smile. I go. I do the things I know need to be done. You ask how I am and I say fine. I pick up the little ones and hug them. I sit on the floor and play. I go shopping with you. I clean the house. I cook. I try to be who I want to be and who I know you want me to be.

But, when it’s all over and I manage to make it to the shower, I sob. I can cry in the shower because it’s a private place where no one can see me, and so I just break down and get it all out. I beg God and the universe and any kind of voodoo I can imagine to either help me or kill me because I know I can’t continue like this.

I feel unlovable.

Because I can’t do the things I want to do with you and for you, I find myself impossible to love. I don’t look like I once did. I don’t laugh as much as I once did. I groan and I moan and I’m no fun. I wouldn’t blame you for feeling like you just can’t muster up any affection for me. But, when you remind me that you’re in my life no matter what kind of life it is right now, there is no greater gift you give me. When I feel loved and supported and encouraged by you, I start to believe that maybe there IS hope… that maybe I CAN get better. Thank you for those moments. They sustain me.

I am embarrassed.

I walk like a very old person who has been bent and worn down by time and I pant like a wild animal when I take more than a few steps. My skin has a pallor you would probably see most often in hospice patients, my eyes are often yellowed and dull and my hair is falling out. I wear sweats more than anyone should ever wear sweats and my perfume is BenGay. It’s humiliating.

I know this is scary for you.

You care about me and facing the fact that something is wrong with me makes you feel like I am not a super-human who will never die. I’m breakable. I’m vulnerable. And, you don’t want that to be true. It’s okay. I’m scared, too. I know that my body is dying and no one believes me. I’m not being dramatic. I can feel it happening. I’m always afraid that I’m very near the end.

Things you say have the power to break my spirit.

Well, at least it’s not cancer.

You should go gluten-free.

Diffuse essential oils and you’ll be healed.

Take more vitamins.

Drink more water.

My co-worker has Fibromyalgia and she’s fine.

My co-worker has Chronic Fatigue Syndrome and she’s an attention-seeker.

Doctors are worthless.

You should accept this and learn to live with it.

You should force yourself to do things.

You should see a psychiatrist.

You are depressed and that’s why you feel so bad.

I know just how you feel because I’m tired to, but I have things I have to do so I get up and go do them.

When you say things like that to me, you may as well look me straight in the face and slap me. It would hurt less. The idea that someone I care about doesn’t believe me is horrible. It’s the same as calling me a liar. It’s the same as saying you don’t respect me because I’m not an honorable person.

If after reading this you aren’t convinced and you just can’t bring yourself to believe me, then be kind enough to at least be quiet about it. You don’t have to tell me. I know.

But, if you’ve read this and you can sit for a moment and imagine yourself in my place, you’ve given me a gift and I adore you for it. You can help me not by asking how I am, but by assuming I’m not okay and acting accordingly. Make my steps fewer and my journey easier where you are able, make me laugh when you can, and remind me that I’m worth loving. That’s all.

That’s all I need.

Love,

Sher/Mom/Meemaw

My Toxic Mold Illness Diary: January 30

(Day 42 of the Brewer Protocol.)

My son showed up today from college to get me out of the house. He says that I’ve sounded a little down lately when he calls and he wanted to put eyes on me.

Right? Such a sweet son I have.

We went to brunch, and later on we went to see my grandmonkeys. They always make me smile. I was doing pretty well for awhile and then the invisible embalmer came, as he always does, and emptied me of everything that makes me alive.

I got nauseous and fatigued all at once and that was that.

It was such a good day, despite the yuck. I loved it so much. I hope your day was a good one, too.

So, I take the Chelating Rx in the mornings and I do the Nystatin treatment in the evening. This morning as I was about to do the Chelating, I thought I would snap a quick video to share with you. Feel free to laugh hysterically.

In other news, I cannot believe I’m about to post a video of me shooting my nasal rocket full of meds up my nose. I hope you know this is how badly I want to share this experience with you who are struggling.

Be good to yourself… wherever you are. Do your best to find at least one happy thing this weekend.

xoxo,

Sher

 

My Toxic Mold Illness Diary: January 29

I don’t feel so great today. As I write, I feel a little nauseous and so insanely fatigued I could cry. But, I won’t. Because I’m a bad ass. :-)

A bad ass who is in my warm pajayjays before 5PM. If the house was on fire right now, someone would have to carry me out because I don’t have the energy to run.

Not for nothing, but my skin and hair are train wrecks. My hair has been falling out for a long time, and now it’s just ridiculous. My bathroom trash always looks as though I pull out handfuls for fun. My skin is so dry and itchy, as it always is. Sometimes I think it’s so fragile it might just tear.

Rough day in the land of toxic mold illness.

I should mention that with regard to itchy skin, that’s been such an ongoing battle for me over the years. I remember going to my primary care doc so many times because my arms, (only between my elbow and wrist), would itch so intensely that they were always bloody from digging my nails in trying to make it stop.

We tried everything to no avail. For many months I started putting Capsaicin on them, which is made of the stuff  that makes chili peppers hot. It burned like you can’t believe, especially since my arms were always pretty shredded because of the digging nails thing.

I preferred the pain of the burning over the bone-deep itching that was unrelenting.

Now I look back and recognize that itching sensation was actually quite likely nerve related. That’s my guess anyway as I’ve experienced it in other places over the years, and it’s not an itch like you might get with Poison Ivy, for instance. Like I said, it’s bone-deep and miserable.

Have you ever experienced anything similar?

I had a dentist appointment today and while there everyone was asking me about my diagnosis. My dentist, whom I adore, told me that he is also neck deep into research about mycotoxins and its affect on health. I loved it when he told me he’d read Dr. Brewer’s research and found it remarkable.

He also told me he’d read a bunch of absolute garbage. I agree. Even this early into my diagnosis I am reading such nonsense about mold and toxins that I want to punch a puppy.

He says, and I agree, that the key to vetting physicians’ research is to look for work that’s been published in peer-reviewed journals.

In other news, my fatigue right now feels like my body is melting. I don’t mean that I’m hot. I mean that it feels like my actual physical body is melting right into the floor. I hate this.

I didn’t take my treatment today. I just couldn’t risk it. I knew I had to go out to the dentist and I was afraid of the potential for nausea. I feel upset at myself when I don’t do it.

Tomorrow is another day. Back to the nose rocket in the morning.

Tell me, how are YOU today?

xo,

Sher

Mycotoxin Lab Tests: RealTime Lab

This information has been provided to me by RealTime Lab. I’m grateful to them and appreciate that they were willing to share what they can with each of you.

I have no financial interest in RealTime Lab. It just happens that they were the lab I used because my Doc has vetted them and used them for years in his research into mold poisoning. You may prefer to find a different lab. In any case, I encourage you to go to your doctor or find a doc that can help you make those decisions.

The information below is not intended to diagnose, treat, cure, or prevent any disease.

Do I need to get the testing done through RealTime Lab?  RealTime Lab does not prescribe to, diagnose or treat patients.  Patients must discuss any lab testing with a health care provider.

 How much does the test cost? The cost for the urine mycotoxin panel is $699.

Will insurance cover these tests?  Each insurance company reimburses a different amount based on your explanation of benefits.  The test will be paid for up-front and then either RTL can bill your insurance company or we will provide you with a paid invoice so that you can bill your insurance company.  Please call the Patient Navigation department at RTL at 855-MYCO-SOS (855-692-6767) with further insurance questions or to get the CPT codes for this testing.

I have been sick for a very long time and am on disability.  I barely have the money for any of my medical bills.  This is common with any chronic illness where a patient is no longer able to work.  There are organizations available to help patients with medical bills.  Please call the Patient Navigation department at RTL at 855-MYCO-SOS (855-692-6767) to discuss charitable organizations that are available to help pay for medical bills. 

 Do I have to have a physician to order the testing and/or treatment?  Yes.  Please call the Patient Navigation department at RTL at 855-MYCO-SOS (855-692-6767)  to get a list of physicians in your area who order testing through RealTime Lab, OR have your physician call 972-492-0419 to order test kits.

How can I find a physician in my area?  Please call the Patient Navigation department at RTL at 855-MYCO-SOS (855-692-6767)  to get a list of physicians in your area who order testing through RealTime Lab

 How can I get my physician to order the testing? Please have your physician call 972-492-0419 to order test kits. (Note from Sher: please click here for a free printable I put together that can help you talk to your doc about getting tested.

 How do I get my home tested?  Please call the Patient Navigation department at RTL at 855-MYCO-SOS (855-692-6767)  to get a list of ENV inspectors in your area who already use environmental mycotoxin testing through RTL.  OR have your environmental inspector contact RTL to order test kits.

How do I get my home remediated?  You will discuss this with an environmental inspector

What type of treatment is available for patients with mold/mycotoxin related illness?  RealTime Lab does not prescribe to, diagnose or treat patients, but the Patient Navigation department is able to provide the latest research on mycotoxins and their link to human illness.  Some research articles provide information on treatment.  Please call the Patient Navigation department at RTL at 855-MYCO-SOS (855-692-6767) to have this peer-reviewed, published research emailed to you.

The information above is not intended to diagnose, treat, cure, or prevent any disease.

My Toxic Mold Illness Diary: January 28

(Day 40 of treatment on the Brewer Protocol.)

The first month I did the Protocol, it was hit and miss at best. The nausea was wicked and so I had to start and stop while my primary care doc and I set out to figure out what to do.

With some trial and error I found that it’s most definitely the Chelating RX that’s causing stomach upset. I don’t suspect it happens to everyone. Not sure. But, as I have ulcers anyway I’m not surprised that it was not helping matters.

Chelating RX

I also went back on Sucralfate and Doc has made sure I have plenty of Zofran if I need it. The upswing to the Sucralfate is that it’s on Dr. Brewer’s list of things that can help me eliminate these mycotoxins.

So, moving forward I plan to write here every few days or so to keep track of my progress for myself and Dr. Brewer, but also to share with all of you who want to know what this process is like.

Yesterday I did my treatment like a good girl. Every time I fire that nasal rocket of medicine up my nose, I complain. And, every time I complain, I remind myself that in less than a year I am likely to be feeling better than I have in many, many years.

I also remind myself of the kind of suffering in this world that is so much greater than mine. Helps me force myself off the pity-potty.

Below is a photo of the package I’ll be receiving each month throughout this process. In the beginning I thought it was going to cost about $70 a month. As it turns out it’s more like $90. Even at that price for 12 months, the cost will be only $1080. All I have to do is compare that number with the thousands and thousands of dollars I’ve spent on docs and scans and tests in just the last few years alone, and I am happy to give them ninety bucks.

The meds to treat my toxic mold illness each day.

In addition to the Chelating RX, I open a blue capsule of Nystatin, mix it with a little distilled water and saline and inhale. I don’t think I’m having any side effects of the Nystatin at all.

I woke up this morning feeling very much like I’d consumed several cups of coffee in my sleep – jittery and shaky and with a general feeling of anxiety. I’m not sure what that’s about honestly. Maybe I’m sleep-caffeinating. :-)

The great news for this day is that I haven’t yet had to take any Zofran at all and it’s nearing supper time.  The crappy news is that I looked at myself in my magnifying mirror while wearing my glasses. An old, sick woman with sallow skin and dull eyes was in there… and it makes me sad. I have aged like no other in the last ten years.

These two things should never be used together. Ever.

Wherever you are, I hope you’re finding the strength within  you to keep moving toward wellness… whatever that looks like for you. If you’d like some support, or you have a zillion questions about toxic mold illness, I encourage you to join our closed Facebook group by clicking here.