- Doctor recommends
- Shoemaker
I worked with Dr Shoemaker to create a thorough yet easily absorbed "101" guide summarizing his work on mold illness (aka CIRS).
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Dr. Shoemaker's Mold/CIRS (Chronic Inflammatory Response Syndrome) 101 for Patients !
Introduction
The information on Mold illness (Dr Shoemaker calls it CIRS - Chronic Inflammatory Response Syndrome) can be overwhelming. Here is condensed information to make your life easier! (This information was gathered by a patient. Please follow your doctor’s advice.)
Nifty new things:
“Mold Illness”
The Biotoxin Pathway (large clear version) diagram sums up CIRS nicely.
Papers with in-depth information:
The protocol fixes problems step by step. Not every patient is the same, so you need a certified doctor to guide you. 14 Step Plan Explained. You start at the bottom of the pyramid and go to the top.
The very difficult first step is limiting further exposure to water damaged buildings. Requires lifestyle changes.
Do your standard blood tests look normal but you feel bad? Have you been told “it's all in your head”? Find a doctor who understand
If you have been diagnosed with CIRS by a Shoemaker certified doctor, the top things you can do are:
Safe Living/Work Space
Limiting your exposure while treating CIRS allows you to heal faster. This is hard, there are many water damaged buildings (up to 50%). It is essential.
Testing methods - ERMI/HERTSMI
These are EPA validated DNA-based tests. You can fill out a form on mycometrics.com to get sampling supplies mailed to you. Or you can use your own clean dry Swiffer cloth and print this PDF form.
See the HERTSMI-2 paper Shoemaker, R.C. & Lark, D. (2016). HERTSMI-2 and ERMI: Correlating Human Health Risk with Mold Specific qPCR Water-Damaged Buildings, IEP Appendix B (p26), Indoor Environmental Professionals Panel of Surviving Mold Statement.
Run a HERTSMI test (~$150) on your home/work using Mycometrics Mycology Lab. An ERMI test (~$350) can tell you even more information.
Options:
Home Inspection
A visual inspection can find things no test can. In general, mold inspections will involve the use of special equipment like moisture sensors, cameras, etc. **Make sure to check your entire home (crawlspace, attic, etc)**
Finding an inspector who understands CIRS can be hard. Greg Weatherman is Shoemaker-backed and offers in-person (East Coast) and FaceTime/Skype consultations and can help oversee inspection/remediation and suggest local inspectors. He can also explain ERMI/HERTSMI test results.
Michael Schrantz in Tucson, Arizona. Also travels.
Remediating
Remediation is the fixing of water damaged portions of a building. It can be expensive, time consuming, and expose you and your belongings to contamination. Seek out an expert like Greg Weatherman to assist you.
Cleaning
To keep your space clean, some simple ideas are:
Medications
Closely follow your doctor's orders!
Cholestyramine (CSM) and Welchol are “binders” that you take orally to remove biotoxins. See the CSM Fact Sheet. This is a large topic, the information below only scratches the surface.
VIP spray is sprayed up the nose. It can offer the CIRS patient many benefits and is typically used at the end of the protocol. Dr Shoemaker has shown in studies that it can sometimes help reverse brain damage.
*** BEG, VIP, CSM Suppliers List 5/16 *** - contact info, shipping costs, additional info.
Losartan is a blood pressure medicine sometimes used in the protocol to help lower the inflammation marker called TGFb1.
Desmopressin for fluid balance, etc. Must only be used by providers confirmed to know safety protocols.
Other medicines sometimes used are DHEA/HCG for hormones. *For men, using testosterone injections or cream isn’t advised*. Clomid is another option.
Lab Tests
Shoemaker blood labs are performed mostly at Quest Diagnostics, but some are only available at Labcorp (HLA DR by PCR, MSH, MMP9).
Some of the special tests can be tricky for the labs to run (ask them to carefully process them) and it may take some time for results to come back. C4a can take a month.
Study the Physician’s Lab Sheet with specific codes for the two labs. There are many potential tests to run. If you can, running most of them initially can be helpful. Only running a few might skip something important. Ask your doctor.
Part Four: Diet, Supplements, Support
Diet
In general, fresh (organic if possible), whole food is best. It is expensive to eat this way and not everyone can afford it, so just try your best! This is a huge topic. For some, food allergy testing can help determine sensitivities, and a nutritionist can be helpful, etc.
Supplements
There are so many supplements available, follow your doctor’s advice!
A multivitamin is probably useful for most. Dr Shoemaker often recommends high dose fish oil (2.4 grams EPA, 1.8 grams DHA), especially during certain phases of the protocol. Check fat soluble vitamins A,D,K,E especially when on CSM long term.
Support
CIRS can be a very difficult and isolating disease. Seek out help!
Pharmacies
Home testing
Facebook Groups
Hepa Filters/Air Cleaners
Websites
---------------------------------------------------------
Dr. Shoemaker's Mold/CIRS (Chronic Inflammatory Response Syndrome) 101 for Patients !
Introduction
The information on Mold illness (Dr Shoemaker calls it CIRS - Chronic Inflammatory Response Syndrome) can be overwhelming. Here is condensed information to make your life easier! (This information was gathered by a patient. Please follow your doctor’s advice.)
Nifty new things:
- Sign up for Dr Shoemaker’s free e-book “Frequently Asked Questions, Volume 5”
- Mold Illness Made Simple - An eight week online course that allows you to grasp the key concepts and science of CIRS. Self-paced.
- Fill in your HLA genes, share with others here
- CIRS, Dr Shoemaker, The Shoemaker Protocol
- Finding a Safe Living/Work space, Testing/Inspecting/Remediating/Cleaning
- Medications, Lab Tests
- Diet, Supplements, Lifestyle
- Resources
“Mold Illness”
- Generic term for illness due to inflammation caused by inhaling toxins in a water damaged building.
- Some people can’t remove biotoxins as well as others, due to their genetics. The antigens stay in the body, and our own defenses bombard our body in response to those antigens.
- A general term is “biotoxins” - fungi, bacteria, mold, spores from molds, VOCs, etc. They can all cause inflammation via inhalation.
- The inflammation mold causes can affect every system of the body - hormones, brain function...causing a long list of symptoms like: fatigue, pain, cognitive/psychiatric issues, sleep disturbance, etc.
- Mold Illness can be diagnosed as chronic fatigue, depression, fibromyalgia, MS, lupus, Lyme disease, inflammatory bowel disease, irritable bowel, etc. Many conditions have symptom overlap.
The Biotoxin Pathway (large clear version) diagram sums up CIRS nicely.
Papers with in-depth information:
- Intranasal VIP safely restores volume to multiple grey matter nuclei in patients with CIRS - March 2017.
- Genomics and VIP Paper - VIP fixes gene regulation, October 2016.
- Consensus Statement Part II - Testing and remediation guidelines for those with CIRS, July 2016.
- Neuroquant Brain MRI Paper - Shows reversal of brain injury, April 2016.
- VIP Study - Shows improvements in symptoms/labs using the Shoemaker protocol and VIP, March 2013.
- Mold Propensity Index - Measure the health risk of a property.
- Control your immune system’s antigen response to biotoxin exposures.
- About 25% of the population is more genetically susceptible. Within the 25% there are variations. People with certain HLA combinations (haplotypes) won't be able to create effective antibodies to biotoxins from mold and bacteria from WDB, Lyme, dinoflagellates/ciguatera or any of those if multisusceptible.
- There are other genes involved as well, research is being done in this area and more advanced diagnostics will be available. The inflammation in CIRS causes hundreds of other genes to become dysregulated in their expression (turned off or on). Dr Shoemaker has developed a genomic test which shows the expression of these genes called Progene DX. This will be a useful tool in diagnosis and treatment of CIRS especially in complex cases as it will show specific fingerprints for mold, Lyme, ciguatera and MARCoNS.
- CIRS research leader, has treated thousands of CIRS patients.
- Created the Shoemaker Protocol - step-by-step patient treatment protocol.
- Pioneered use of blood lab biomarkers and Neuroquant brain MRIs for diagnosis of CIRS.
- His website http://www.survivingmold.com/ has more info:
- Treatment protocol, testing, remediation, research papers, find a certified doctor, news, store, books, FAQ document, telephone support group, etc.
- Memberships are available - can submit questions to Dr Shoemaker, receive emails with answers, get FAQ, etc.
- Surviving Mold YouTube channel
- Conferences - watch any time via computer/device!
The protocol fixes problems step by step. Not every patient is the same, so you need a certified doctor to guide you. 14 Step Plan Explained. You start at the bottom of the pyramid and go to the top.
The very difficult first step is limiting further exposure to water damaged buildings. Requires lifestyle changes.
- Test your home/office with Mycometrics ERMI/HERTSMI DNA testing.
- Hire a mold inspector. Greg Weatherman - in person and FaceTime/Skype consulting/referrals/advice (wrote chapter in Shoemaker’s book). Michael Schrantz (Tucson, Arizona)
- Fix issues (remediate), or possibly move.
- If you feel bad somewhere, follow your instincts!
- More on this in Part Two.
- “VCS” vision test online (cheap) or at doctor’s office. (Note: some patients pass the test despite having CIRS)
- Shoemaker blood labs (varies by patient). Most available at Quest Diagnostics, some only Labcorp (HLA DR by PCR, MSH, MMP9).
- HLA calculator (figure out your results). Also see "Rosetta Stone" in the books Mold Warriors or Surviving Mold and the HLA chart on this page. Visit a knowledgeable provider to confirm your reading.
- Fill in your HLA genes, share with others: http://tinyurl.com/hlaform
- Physician’s Lab Sheet with all Shoemaker labs and specific codes
- Nasal swab test for MARCoNs (at doctor’s or kits mailed free to your home - Microbiology Dx). Note: People are also doing a dental scan called “3d cone beam ct scan” related to MARCoNS problems.
- Neuroquant Brain MRI (if possible). Has volumes of 11 brain regions, can help determine if damage is from mold vs Lyme, etc. Detects things a standard MRI cannot.
- Neuroquant Introductory Video with Shoemaker
- Cortechs Labs, creator of Neuroquant technology
- Find a Neuroquant compatible MRI center
- Example of “General Morphometry Report” - volumes of 11 brain regions, left and right side.
Do your standard blood tests look normal but you feel bad? Have you been told “it's all in your head”? Find a doctor who understand
- Shoemaker Certified Doctors - If suffering from any of the long list of CIRS symptoms like pain/brain fog/fatigue, but undiagnosed, you can make an appointment with a Shoemaker certified doctor (Full list of certified doctors, with their essays) .
- Phone Consultations - Can’t travel? Dr Shoemaker, Dr Mary Ackerley and Dr Scott McMahon do phone calls! (Others may too, check with doctors in your area). They can work with a local doctor for prescriptions, etc. Dr Shoemaker phone consult request form. Or contact Dr Shoemaker’s office: Deborah Waidner at debnewsome1@hotmail.com.
If you have been diagnosed with CIRS by a Shoemaker certified doctor, the top things you can do are:
- Avoid poor quality (indoor) air.
- Stick with treatment - there is HOPE!
- Get support.
Safe Living/Work Space
Limiting your exposure while treating CIRS allows you to heal faster. This is hard, there are many water damaged buildings (up to 50%). It is essential.
Testing methods - ERMI/HERTSMI
These are EPA validated DNA-based tests. You can fill out a form on mycometrics.com to get sampling supplies mailed to you. Or you can use your own clean dry Swiffer cloth and print this PDF form.
See the HERTSMI-2 paper Shoemaker, R.C. & Lark, D. (2016). HERTSMI-2 and ERMI: Correlating Human Health Risk with Mold Specific qPCR Water-Damaged Buildings, IEP Appendix B (p26), Indoor Environmental Professionals Panel of Surviving Mold Statement.
Run a HERTSMI test (~$150) on your home/work using Mycometrics Mycology Lab. An ERMI test (~$350) can tell you even more information.
Options:
- Testing the whole house versus single room versus single floor...
- Existing dust versus sampling from plastic bags/bins left out for a certain period…
- Swiffer cloth versus vacuum method...
- Testing indoors, or also outdoors as a “control”...
- **Ask your doctor what’s best for your situation and how to perform the tests**
Home Inspection
A visual inspection can find things no test can. In general, mold inspections will involve the use of special equipment like moisture sensors, cameras, etc. **Make sure to check your entire home (crawlspace, attic, etc)**
Finding an inspector who understands CIRS can be hard. Greg Weatherman is Shoemaker-backed and offers in-person (East Coast) and FaceTime/Skype consultations and can help oversee inspection/remediation and suggest local inspectors. He can also explain ERMI/HERTSMI test results.
Michael Schrantz in Tucson, Arizona. Also travels.
Remediating
Remediation is the fixing of water damaged portions of a building. It can be expensive, time consuming, and expose you and your belongings to contamination. Seek out an expert like Greg Weatherman to assist you.
Cleaning
To keep your space clean, some simple ideas are:
- Use “true” HEPA filters, move them around your rooms. Perhaps start with a less expensive model like Honeywell. Models with charcoal are good for odor reduction. Higher end models are made by IQ Air and Austin Air but if you need to move and replace filters it can be expensive. Note: A small HEPA filter cannot “fix” major indoor quality issues like a bad HVAC system, moldy basement, etc.
- Dr Shoemaker praises Air Oasis air cleaners. They use different technology than HEPA and deal with the ultra fine particles HEPA can miss.
- “Quat” (Windex/Fantastic etc) clean items.
- Use vacuums with HEPA filters. Inexpensive: Shark. Expensive: Miele
- Dry Swiffer cloth rooms.
- Wash bedding/clothing regularly, Borax can be used in addition to standard detergent.
- Consider “cross contamination”, if you bring items from an unsafe place into your space. Think: Bringing items from a musty place into your house. Moving old books/papers.
Medications
Closely follow your doctor's orders!
Cholestyramine (CSM) and Welchol are “binders” that you take orally to remove biotoxins. See the CSM Fact Sheet. This is a large topic, the information below only scratches the surface.
- They remove biotoxins (you poop them out). Start with a low dose!
- CSM is more powerful and is taken away from food, Welchol is usually taken with food. Take away from supplements and other medications. Ask your doctor about timing.
- There are a few types of CSM: “Standard” packets/tub which insurance usually covers but has additives, “Pure” compounded, “Light” (avoid).
- Most use the standard form. CSM can be constipating, helpful: extra magnesium, fruit, vitamin c, fiber.
- Other binders like charcoal/clay/zeolite have not been published by anyone as effective.
VIP spray is sprayed up the nose. It can offer the CIRS patient many benefits and is typically used at the end of the protocol. Dr Shoemaker has shown in studies that it can sometimes help reverse brain damage.
*** BEG, VIP, CSM Suppliers List 5/16 *** - contact info, shipping costs, additional info.
Losartan is a blood pressure medicine sometimes used in the protocol to help lower the inflammation marker called TGFb1.
Desmopressin for fluid balance, etc. Must only be used by providers confirmed to know safety protocols.
Other medicines sometimes used are DHEA/HCG for hormones. *For men, using testosterone injections or cream isn’t advised*. Clomid is another option.
Lab Tests
Shoemaker blood labs are performed mostly at Quest Diagnostics, but some are only available at Labcorp (HLA DR by PCR, MSH, MMP9).
Some of the special tests can be tricky for the labs to run (ask them to carefully process them) and it may take some time for results to come back. C4a can take a month.
Study the Physician’s Lab Sheet with specific codes for the two labs. There are many potential tests to run. If you can, running most of them initially can be helpful. Only running a few might skip something important. Ask your doctor.
Part Four: Diet, Supplements, Support
Diet
In general, fresh (organic if possible), whole food is best. It is expensive to eat this way and not everyone can afford it, so just try your best! This is a huge topic. For some, food allergy testing can help determine sensitivities, and a nutritionist can be helpful, etc.
Supplements
There are so many supplements available, follow your doctor’s advice!
A multivitamin is probably useful for most. Dr Shoemaker often recommends high dose fish oil (2.4 grams EPA, 1.8 grams DHA), especially during certain phases of the protocol. Check fat soluble vitamins A,D,K,E especially when on CSM long term.
Support
CIRS can be a very difficult and isolating disease. Seek out help!
- Patti Schmidt Coaching
- Toxic Mold, CIRS, and Lyme Disease Facebook Group (and others)
- Find a good counselor or therapist
- Take frequent showers, especially if you’ve gone out. Change clothes.
- Try to keep moving, but don’t overdo it. Pushing too hard with aerobic activities can set you back. Think: stretching, light yoga, short walks.
- Use an alarm on phone for reminders for taking meds etc.
- Spend time outdoors.
- Connect with others.
Pharmacies
- Acacia (Tucson, Arizona)
- Apothicare (Fort Myers, Florida)
- Clark’s (Bellevue, Washington (425) 881-0222)
- Custom Prescriptions (Bellevue, Washington)
- Hopkinton Drug (Hopkinton, Massachusetts)
- Mixtures Pharmacy (Phoenix, Arizona)
- Montana Compounding (Missoula, Montana)
- Remedies (Lakeside, Montana)
- Woodland Hills Pharmacy (Woodland Hills, California)
- **BEG, VIP, CSM Suppliers List 5/16 has more details**
Home testing
- Mycometrics HERTSMI-2 test
- Microbiology dx - will mail test kits for free to you or your doctor
- Greg Weatherman (Arlington, Virginia - nationwide support)
- Michael Schrantz (Tucson, Arizona - nationwide support)
Facebook Groups
Hepa Filters/Air Cleaners
- Cheap box fan DIY filter
- Affordable brands like Honeywell (“true hepa” models) can be good.
- IQ Air
- Austin Air
- Air Oasis
- Whole house units, dehumidifiers… See Air Oasis Bi-Polar units - installs into almost any air conditioning unit
Websites
- Biotoxin Journey - excellent, thorough info from a CIRS patient.
- Toxic Mould Support Australia - CIRS info from down under.
- Chris Kresser - great podcasts, some with Dr Shoemaker.
- DFEND - aims to build affordable, non-toxic housing to aid in treatment of neuroendocrine-immune disease.
- Paradigm Change
- Better Health Guy
- Mold Illness Made Simple - An eight week online course that allows you to grasp the key concepts and science of CIRS, at your own pace.
