The Vibrant Health Podcast: Episode #34 – Mold Illness 201

by lydia on May 3, 2016

The Vibrant Health Podcast: Episode #34 - Mold Illness 102 // divinehealthfromtheinsideout.com

Today, Jessica and I are joined by our good friend Lori Roop. Lori actually joined us back on episode #30 and spoke about Mold Illness and CIRS, which is Chronic Inflammatory Response Syndrome. If you haven’t listened to that episode yet, then I highly recommend it as it’s a primer for what Lori is going to expand on today.

For those of you who don’t know Lori, she is a Certified Clinical Herbalist and Clinical Nutritionist and a mold illness survivor. Lori attended the Rocky Mountain Center for Botanical Studies where she has completed over 1,300 hours of study in a wide range of herbal medicine topics.

Lori has had an incredible journey of healing and I am so thankful that she finally found the answers she needed when she got her mold illness diagnosis. I knew Lori when her health was at its worst and it was truly heartbreaking for me to see her suffer as much as she did. And she suffered without any answers from over 60 practitioners that she saw over the course of 6 years.

No one could tell her what was going on and why she was so sick.

But thankfully, she finally found some answers, has started to regain her health and now, she wants to help spread the word about mold illness and hopefully help others who are suffering from this little known, but likely very common health issue.

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Listen to The Vibrant Health Podcast :: Episode 34

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Download The Vibrant Health Podcast :: Episode 34

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Read The Vibrant Health Podcast Show Notes :: Episode 34

Mold Illness 201 Show Notes

Make sure you check out the Links from the Episode for lots more information on today’s topic.

Today, Lydia and I are joined by our good friend Lori Roop. Lori actually joined us back on episode #30 and spoke about Mold Illness and CIRS, which is Chronic Inflammatory Response Syndrome. If you haven’t listened to that episode yet, then I highly recommend it as it’s a primer for what Lori is going to expand on today.

For those of you who don’t know Lori, she is a Certified Clinical Herbalist and Clinical Nutritionist and a mold illness survivor. Lori attended the Rocky Mountain Center for Botanical Studies and The Colorado School of Clinical Herbalism where she has completed over 1,700 hours of study in a wide range of herbal medicine topics and nutrition.

Lori has had an incredible journey of healing and I am so thankful that she finally found the answers she needed when she got her mold illness diagnosis. I knew Lori when her health was at its worst and it was truly heartbreaking for me to see her suffer as much as she did. And she suffered without any answers from over 60 practitioners that she saw over the course of 6 years.

No one could tell her what was going on and why she was so sick.

But thankfully, she finally found some answers, has started to regain her health, and now, she wants to help spread the word about mold illness and hopefully help others who are suffering from this little known, but likely very common, health issue.

A Little About Lori and Her Journey

Lori is a mold illness sufferer. She was unable to find any practitioner who could help her for years. There were no doctors in the Denver/Boulder area at that time who could diagnose her with mold illness, and no one breathed a word about mold to her.

Now, there are many different docs who are at least aware of mold illness in the Denver/Boulder area. Unfortunately, there is also a lot of inadequate treatment of mold illness.

At Lori’s worst, she spent about 2 years off and was bedridden, unable to drive, unable to work, and unable to take care of her own children. It destroyed her family financially, but thankfully, did not destroy her marriage.  

Lori is now well into recovery, though it must be managed for the rest of her life. She is also the founder of the Denver Area Mold Illness and Support Group, and they meet once a month. Her goal is to educate people about the dangers of mold and mold illness in an attempt to save another family from what her family has been through.  

Lori’s Approach to Mold Illness  

Lori comes from a Shoemaker perspective and as a herbalist and nutritionist, she is also influenced by nutrition and herbs.

Lori’s Reasons for Choosing the Shoemaker Protocol:  

  • It by far has the most data accumulated on any protocol. Shoemaker himself has seen over 7,000 patients since 1998. Dr. McMahon, a Shoemaker-certified doc,  has had over 700 CIRS patients, in addition to all the other patients seen by other Shoemaker-certified docs.
  • The Shoemaker protocol is the basis for many of the mold docs that exist around the country.  

How Do Doctors Diagnose CIRS?

  • Does the person have a multi-system, multi-symptom illness?
  • Has the person been exposed to mold? Or possibly any of the other biotoxins?
  • Have other conditions that have multi-system and multi-symptom illness been ruled out? (Such as autoimmune disease and diabetes)
  • Does the Shoemaker lab panel show dysregulation characteristic of biotoxin illness?
  • Does the person fail their VCS test?  

Dr. Thomson and Dr. Milani, both Shoemaker-certified docs, say that if at least the first 4 questions can be answered with a “yes,” then that is a positive diagnosis.

How is Mold Illness Treated?

If it is determined you are sick, then treatment begins and is outlined on the survivingmold.com website under “Step-by-Step.”  

  1. Get out of the mold. More correctly, the water-damaged building (WDB), because remember in the first podcast, we covered the plethora of molecules and particles that exist in a WDB – and it is not “just” mold. If someone gets better by leaving the WDB, then no more treatment is needed.  
  2. Start medicinal treatment. Doctors often prescribe Cholestyramine (CSM) / Welchol Protocols (both pharmaceuticals).
  • Cholestyramine (CSM) is a synthetic, indigestible resin that binds to bile acids, is not absorbed, but reduces your levels of mycotoxins. Basically, you take CSM to bind to mycotoxins in your system, which you then excrete in the stool.  
  • Some research to support the use of CSM as a bile acid sequestrant:  http://www.ncbi.nlm.nih.gov/pubmed/11678589, http://www.ncbi.nlm.nih.gov/pubmed/10606152.  
  • For people who cannot tolerate CSM, Welchol will be used instead, though it is only about 25% as effective as CSM, so it takes much longer to get  well.

Notes about CSM / Welchol

Many people ask why natural binders, such as clay, charcoal, etc., cannot be used as replacements of the prescription bile acid sequestrants. In short, the natural binders have been tested by Dr. Shoemaker and other mold illness docs, and they are just not as effective, reliable, and consistent to be the board replacements.  Natural binders are sometimes combined with the pharmaceutical binders or used in other variations for the ultra-sensitive CIRS sufferers.

Since this is a podcast run by two natural-minded bloggers and will have natural-minded listeners, we want to address some worries people have when they want to refuse any pharmaceutical medications. Via Lori:

“First, I’ll start by explaining my position. I consider myself and practice as a vitalist herbalist. In short, vitalism is a holistic approach aimed at improving health through supporting one’s vital force, and addressing mind, body and spirit and the interconnectedness of the world. One tenet of vitalism is the belief that the body can oftentimes heal itself if given the right tools or removing the roadblocks that are prohibiting health.

My goal is to address the root cause of whatever is causing the problem, which I find to often be in direct opposition to mainstream medicine whose main goal is to use meds to suppress symptoms.

When it comes to CSM, Dr. Shoemaker already knows what the basic root cause is. Its mold illness and biotoxins and mold illness sufferers are incapable of removing these toxins on their own without some form of outside help. CSM is used to bind to these biotoxins and escort them out of your body and as a result, performs a function in your body that your body is unable to perform itself. This is a tool used to help improve the toxic load of the body and help the body begin to be able to heal.”

The Use of CSM Can Cause an Intensification Reaction

Intensification reactions, i.e. feeling worse than you did before you started the CSM. This can take place whenever the body rids itself of chronic toxins, yet opens up one of the least understood mechanisms of the human physiology. For further reading on this, Lori recommends the book, Desperation Medicine by Dr. Ritchie Shoemaker (http://amzn.to/25AKA76) and the site, ParadigmChange.me.

Types of CSM

  1. The most common form of cholestyramine and the form that thousands of Shoemaker patients have gotten well with is regular CSM. It does contain artificial ingredients such as D&C Yellow No. 10, FD&C Yellow No.6, natural and artificial orange flavor, polysorbate 80, propylene glycol alginate, and sucrose. This is the CSM used by Shoemaker for the vast majority of his patients and it has worked very well.  

    Now, you know I’m natural-minded, so why would I support the use of artificial ingredients? Simple. This stuff is cheap, is very commonly covered by most insurances, and most mold illness sufferers are going broke!  A dose of this type of cholestyramine is 9 grams, and a full dose of CSM for mold illness sufferers is 4 doses a day. The cost of this product can add up quickly. Refer to the Shoemaker CSM Fact Sheet for more information about dosing.  
  2. If you react to the regular CSM and it’s ingredients, you’ll have to try “pure, compounded CSM.” This is the pure cholestyramine resin with no added ingredients.  A dose of this powder is 4 grams. It is quite a bit more expensive, is very unlikely to be covered by most insurances, as it is a “compounded” medication. If you can tolerate the regular CSM, it will be much more friendly to your bank account. If you can’t though, then thankfully there is this option.
  3. We should also mention CSM “Lite.”  This CSM has all the artificial fillers but instead of sugar contains aspartame. If any CSM should be avoided, my opinion is that it should be this one.  Aspartame has been recorded in the research for causing problems for decades. It can cause digestive upset and neurological issues, both of which are common for moldies, so why exacerbate the problem?  

If you suspect mold illness could be a problem for you, we strongly encourage you to start looking into it. Many people are sick with chronic illness for years before they ever get a mold illness diagnosis. These people, like Lori, have worked with countless practitioners, have had every diagnosis under the book, have done every natural remedy they can, yet they don’t get better.

Please visit the Links from This Episode for more information on how to dig deeper into mold illness if you suspect it could be an issue for you.

{ 3 comments }

Karen U. May 13, 2016 at 2:16 pm

First of all, thank you for an amazing blog; I find all your information so enlightening! This episode definitely hit home for me because I am too undergoing mold detox with Cholestyramine. I just want to share my experience with the different Cholestyramine products…I’ve taken the commercial product (with artificial ingredients) before, but I was getting nauseous & more fatigued. I had a feeling that it might be the ingredients so I asked my doctor to prescribe me the “pure form” (no artificial ingredients) and wow – life changing. I am no longer nauseous, I have more energy, and I finally feel like I’m on the right track towards detoxing! To me it just made sense to be on the pure form because I was just adding more inflammation to my body with all the dyes and artificial stuff in the regular commercial product. I should have gone with my instinct to stick to the pure form as I do with everything else in my diet! Regarding the price of the pure form, yes it is NOT cheap. I was getting it from another pharmacy that was charging about $400 for a month supply but after calling several pharmacies I finally found a pharmacy with a way better price. I’m not sure if I can post their information here (I don’t want to sound like a PSA), but to all my fellow mold warriors seeking the pure form please email me & I will gladly share their contact information. Thank you & have a blessed day!

Karen U. May 13, 2016 at 2:18 pm

Oops forgot to add my contact! My email is uk6802@gmail.com

Lori Roop May 15, 2016 at 12:42 pm

Thanks Karen for posting!

Yep, if we all had our druthers, I think most people would always choose products without artificial ingredients. But as I work with the mold illness community, there are MANY people who have lost everything…the ability to work, their home, their family, they end up living in their car or perhaps even a tent or just simply don’t have an extra $200 a month for cholestyramine (CSM) on top of everything else.
Additionally, literally thousands of people have gotten well with the regular form of CSM while on the Shoemaker protocol.

So yes, if a mold illness sufferer has the financial means to “choose” compounded csm, or the unfortunate few that “have” to take compounded due to reactions from regular csm, compounded is a great option. But I don’t want people to feel they won’t get well from regular csm if that is all they can afford. Because *most* people will get well from regular csm.
But I’m really glad you, Karen, are able to use what is helping you!

I also listed 4 compounding pharmacies who we have researched at the end of the podcast who have great prices for compounded csm, with prices listed. If you have a price that beats those pharmacies, I would love to hear it: LoriRoopRevitalizeYourHealth@gmail.com.

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