Mold Illness: Surviving and Thriving: A Recovery Manual for Patients & Families Impacted By CIRS

Copyright © 2017 by Paula Vetter FNP-C, Laurie Rossi R.N., and Cindy Edwards C.B.A.

All rights reserved. No portion of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopy, recording, or otherwise) without the prior written permission of the copyright owners.

Printed in the United States of America

Print ISBN: 978-1-54392-137-3

eBook ISBN: 978-1-54392-138-0

DEDICATION

This manual is dedicated to Dr. Ritchie Shoemaker, the visionary pioneer who identified and tirelessly unraveled the mysteries of the previously elusive syndrome, now known as CIRS.

Dr. Shoemaker’s relentless dedication to rigorous scientific investigation and documentation produced a protocol that has empowered thousands of patients to reclaim their lives.

The Surviving and Thriving Recovery Manual is a tribute to the living legacy of Dr. Shoemaker.

This manual is also dedicated to the struggles of countless thousands of CIRS patients, many still undiagnosed. Here you will find a voice, a beacon of hope, and a roadmap to recovery. You are not alone.

TESTIMONIALS FROM CIRS PATIENTS

In working with Paula and Laurie, I was taught about the physiology of CIRS…..what was happening to my body and how we were going to reverse these devastating effects. I had never had medical treatment like this before. Someone actually cared enough about me to teach me to be my own advocate going forward. I now had the tools to manage CIRS.

When I got the results of my home and work mold tests, Laurie and Paula put me in touch with Cindy Edwards, an amazing CIRS literate environmental professional and certified building analyst. Cindy was able to walk me through the details of what I needed to do to make my environments safe for me. All of this was a tremendous amount of work but my team was there for me every step of the way. They gave me encouragement and even tough love when I needed it. They even helped to educate my local primary care doctor so that she could provide the appropriate follow-up care for me and for others with CIRS.

It has been a little over four years since I first became sick. I am finishing up my VIP and feeling better than I have in longer than I can remember. All of my blood work is slowly improving and I am finally feeling hopeful about my future again thanks to my partnership with this team of professionals. K B

Paula and Laurie provided me with comprehensive information and references to educate me about CIRS, its causes, and its multiple complex effects. Laurie taught a very thorough class to reinforce this learning and to teach us about how to get better through symptom tracking, the Shoemaker Protocol, and appropriate mold remediation in our homes and workplaces. Paula and Laurie scheduled periodic appointments with me to keep track of biomarkers and help me with each step of the protocol. Cindy Edwards, my home performance and biotoxin specialist, consulted with me on a regular basis about how to make sure that my home was safe for me and my family.

I am now a good way through the protocol. I am grateful to them for their knowledge, professionalism, accessibility, and conscientiousness. This is such a difficult and complicated disease that I could never have navigated treatment on my own with my primary care physician.

Most of all, I am grateful to Paula, Laurie, and Cindy for their kindness, empathy, and integrity. They care deeply about their patients and want them to get better. They invited questions and answered all I had with plentiful information and references to resources, and treated me with respect. This team has helped me get better so that I will be able to live a full life, and I will never forget that. PD

TABLE OF CONTENTS

INTRODUCTION

FOREWORD

WHAT IS CHRONIC INFLAMMATORY RESPONSE SYNDROME?

HOW DO I KNOW IF I HAVE CIRS?

WHY DID I GET SICK?

WHAT ARE BIOTOXINS?

BIOTOXIN PATHWAY

STEP BY STEP ACTION PLAN

TRACKING DAILY ACTIVITY

AN ESSENTIAL SURVIVAL SKILL

A WORD ON SUPPLEMENTS:

EXERCISE AND CIRS

THE EMOTIONAL TOLL OF CIRS

DO I NEED A CERTIFIED CIRS PRACTITIONER?

WHAT DOES MY PRIMARY CARE PRACTITIONER NEED TO KNOW?

HOW DO I KNOW IF A BUILDING IS WATER DAMAGED?

WHERE DO I START WHEN MY HOME MAY BE THE PROBLEM?

ENVIRONMENTAL ASSESSMENT

HOW DO I EFFECTIVELY TEST FOR MOLD?

BUILDING SCIENCE TECHNIQUES

CRITICAL ENVIRONMENTAL MANDATES:

ADDITIONAL TOXINS TO CONSIDER

PREVENTING RE-EXPOSURE

PACKING TO MOVE OR CLEAN

DAY-TO-DAY MAINTENANCE OF A SAFE LIVING SPACE

TIPS TO THRIVE WITH CIRS

RESOURCES

REFERENCES

APPENDIX

DISCLAIMER

ENVIRONMENTAL

BUILDING CLEANING

GENERAL GUIDELINES CHECKLIST

CARPET REMOVAL INSTRUCTIONS

CLEANING TECHNIQUES

BY CONTAMINATION LEVEL

CONTENT CLEANING PROCEDURES CHECKLIST

CONTENT SORT CHECKLIST

ENDPOINT CRITERIA

HOME PERFORMANCE ASSESSMENT CHECKLIST

HOUSE HUNTING

HOUSEHOLD PROACTIVE MAINTENANCE CHECKLIST

INITIAL CLIENT INTAKE FORM

REBUILDING CHECKLIST

REMEDIATION CHECKLIST

TEST DAY

WHAT TO EXPECT

VISUAL BUILDING ASSESSMENT CHECKLIST

DISCLAIMER

MEDICAL

FACTS ABOUT CIRS

FOR FRIENDS & FAMILY

HLA RESULT CORRELATIONS

INITIAL CIRS DATA FORM

LAB RESULTS TRACKING FORM

LAB SPECIMEN OPTIONS

LOW AMYLOSE DIET

MEDICAL/ENVIRONMENTAL TIMELINE

MEDICATION INSTRUCTIONS

COLLOIDAL SILVER/ EDTA/ MUCOLOX NASAL SPRAY

CHOLESTYRAMINE (CSM)

VIP SPRAY

PRIMARY CARE PROVIDERS

OVERVIEW OF THE SHOEMAKER PROTOCOL

RE-EXPOSURE CHALLENGES CRITICAL OBSERVATION SKILLS

MOLDY

QUESTIONS TO ASK WHEN TRAVELING

SCRIPTS FOR COMMUNICATING YOUR SPECIFIC NEEDS

SAMPLE LETTERS RE: CIRS

EMPLOYER

LANDLORD/HOME SELLER

SCHOOL

DAILY TRACKING FORM

INTRODUCTION

GLOSSARY

ABOUT THE AUTHORS

INTRODUCTION

It is with great pleasure that I write to introduce the world to the dedication of Paula Vetter, FNP-C, Laurie Rossi, RN, and Cindy Edwards, C.B.A. They have been working as a team for several years to distill thousands of pages of academic material on all aspects of diagnosis and treatment of chronic inflammatory response syndrome (CIRS) into a short, concise, reader-accessible manual. This publication belongs on the desk of every physician who sees patients with CIRS, every patient who has concerns about a multi-system, multi-symptom illness, and anyone who lives, works or goes to school in the interior environment of a water-damaged building (WDB).

The blunt facts are that CIRS is incredibly common in today’s American society. Back in 2011, the National Institute for Occupational Safety and Health published their opinions that suggested that as many as 50% of US buildings were water-damaged. 50% seems low based on surveys taken by thousands of patients.

Well, so what? Who needs a manual about treatment? WDB never hurt a flea, much less a person, right? Nope. CIRS is one of the most compelling reasons for the explosion of CFS, fibromyalgia and depression seen in the US.

So many people ill from WDB? How can that be? The answer is simple: It is all based on inflammation that is rooted in innate immune responses to foreign invaders, called antigens. The inside of a WDB is always a soup of antigens, with sources coming from microbes like fungi, actinomycetes and bacteria. Mycotoxins make up about 1% of the risk (not a typo. Mycotoxins are trivial in importance compared to actinomycetes and bacteria). Antigen detection leads to inflammation, with harmful gene activation just a moment away from innate immune inflammation.

If we assume that only half of the people in the US might have exposure to WDB that means that maybe 160 million people are at risk for development of CIRS. Since we know that only 25% of all patients have the genetic makeup (HLA haplotype) that can create increased relative risk (susceptibility) to the innate immune illness that is CIRS that means that 40 million people in the US could possibly have problems related to untreated innate immune inflammation.

What that number means is that we add up the number of patients with symptoms-only diagnoses like fibromyalgia, Chronic Fatigue Syndrome, Post Lyme syndrome, reflex sympathetic dystrophy, even depression, as well as Post Traumatic Stress Disorder, and many others we get about 40 million. There are real possibilities that the 40 million number of patients with untreated chronic inflammatory illness is right on the button.

If WDB adds to the problems of those with Post-Lyme, and that occurrence surely is true, the good news is that we have peer-reviewed published documentation of efficiency of a treatment protocol, which step by step will arbitrarily take about one month (each) to correct one abnormality followed by another of innate immune inflammation. Following this protocol gives physicians the ability to measure objective parameters each step along the way, verifying the time for the next step has arrived. We also have the capability to correct differential genomic activation (transcriptomics). Finally, we can show that use of this sequential protocol corrects multinuclear atrophy of grey matter structures in the brain.

These are stunning results.

A barrier to understanding CIRS and its application to treatment of complex illnesses requires learning a new jargon; requires learning a new language; and demands rigorous approaches to science where assumptions are not tolerated and only one step at a time is undertaken with monitoring of each step along the way. We don’t permit guesses; we don’t permit assumptions, we don’t permit speculation. Follow the data!

How is a person supposed to understand this jargon, this new language? The answer is right in front of you. Paula Vetter working together with her colleagues, Laurie Rossi and Cindy Edwards, makes the complexity of language and the complexity of science come alive. Imagine making transcriptomics and antigen presentation easy to read!

I recommend anyone with an interest in never-ending, multi-symptom, multisystem illnesses, especially those acquired following exposure to the interior environment of WDB, to read and learn what these three authors have given to us.

This manual is a prize. This manual is indeed the living legacy of Paula, Laurie and Cindy.

Ritchie C. Shoemaker, MD

Pocomoke, Md

FOREWORD

Got Mold?

Tired? Get headaches? Muscle aches? Stomach issues? Lousy sleep? Urinate all the time? Is your brain a little foggy?

Doctors can’t tell you what’s wrong with you? Do all their treatments fail?

Then this book is for you!

40 million Americans suffer from CIRS (chronic inflammatory response syndrome). Repeated exposure to moldy buildings and other environmental exposures create seemingly unrelated symptoms all over the body. CIRS is a genetic illness causing chronic inflammation leading to decreased blood flow, leaky junctions, brain and gut inflammation and improper regulation of any system in the body. Most sufferers aren’t even aware that there is a single illness that explains all of their symptoms. Many of their doctors aren’t either!

Surviving and Thriving is the most concise yet comprehensive primer I have ever read on how to diagnose, how to treat, and most importantly, how to live with CIRS. The authors, Paula Vetter, Laurie Rossi, and Cindy Edwards, rely on their professional expertise, personal stories and private experience to convey a wealth of CIRS knowledge. No other tome explains the CIRS life in such a straightforward manner. This manual is a gem and should be read by every CIRS sufferer and their family members.

My own CIRS saga began in 2009. I was asked to draw blood tests on some sick children at a local high school. I evaluated and examined 14 children and a teacher who had spent significant time at that institution. Their stories were amazing and so very similar. They averaged 21 symptoms! Many of these children were 14 and 15 years old! Subsequent lab work demonstrated a flurry of abnormal blood tests relating to their innate immune systems and the regulation of critical body systems. They clearly had the same illness, but I didn’t know what it was. Further investigation led me to Dr. Ritchie Shoemaker who had already studied CIRS, treated patients, and written about this illness for 12 years. Now, I have evaluated over 1200 patients, co-authored 9 peer reviewed publications and consensus statements, spoken at numerous national and international conferences and testified a number of times as an expert witness about CIRS. When a certification for CIRS became available, I was the first to certify. I am honored to have been asked to write the foreword for this amazing work.

In October of 2013, Laurie organized and hosted a CIRS conference in San Luis Obispo, CA (or SLO, as the natives call it). Dr. Shoemaker, myself, and 3 other speakers presented Biotoxin Illness- The science behind accurate diagnosis and effective treatment. I met Laurie, Paula, and Cindy for the first time at this conference. I consider each of these three women to be extraordinary. Laurie is an R.N. and a recovering CIRS sufferer. She was so knowledgeable and so sincere. She poured her heart into that very successful meeting as she does with everything she touches. This book is no different. Everything she writes about, she has lived.

Cindy also attended the SLO conference. She provided my first in depth exposure to building performance. Her knowledge not only blew my mind, but took me much deeper into the understanding of the building envelope and just how many variables can create a water intrusion inside your home, your office building or your school.

Paula was in the SLO audience in October of 2013. She is a holistic nurse practitioner, with more than 30 years of experience in both traditional and holistic medicine. She was studying Dr. Shoemaker’s protocol and in the process of certifying. After completing her certification with Dr. Shoemaker, she teamed up