Fighting Mold Illness Is a Game Of Chutes and Ladders. Currently, I’m at the End of a Long Chute.

The treatment path for mold illness follows three broad, consecutive steps:

  1. Ensure you are living and working in a mold-safe environment.
  2. Take medication to bind excess mold and remove it from your body (generally, you end up with mold illness because your body is not good at doing this without medical assistance).
  3. Complete a six month course of medication called VIP that is supposed to repair all the lingering damage caused by mold illness.

Sounds straightforward, right?

Wrong.

First, keeping your home mold safe requires constant vigilance. In our case, we have mold killing UV lights in the HVAC vents, we use highest quality HEPA air filters and change them religiously every 60 days, and we have air purifiers in every room. Additionally, my husband and I are constantly on the lookout for any signs of water damage or intrusion either internally or externally.

I swear, as a result, we have about the cleanest air in a five state radius. But getting here took months of work and diligence, and I could not move on to step 2 above until this was complete.

Step 2 can go on for months, depending on how well you tolerate the mold binding medication. I didn’t, so I spent well over a year working on step 2 before getting to step 3 late last year.

I was rolling along with step 3, until I had a few accidental mold exposures while traveling.

And that’s where the dreaded long chute comes in. You see, if you have a mold exposure during step 3, you need to stop that step and go back to step 2 without passing go. And you cannot return to step 3 until you have successfully completed step 2.

It’s almost October, and I have been working on step 2 since March.

Long chute.

I would like to pause here and acknowledge I am aware I’m speaking in highly non-medical terms. If I had regaled you with the actual terminology and details of each step, you would have stopped reading long ago. Trust me, you are better off with the topline descriptions.

Plus, that’s not the point of this post. I tend to shy away about sharing exact details of my treatments and medications because each person is different, and what’s right for me might not be right for you.

As always, I’m more interested in writing about the emotional impact of living with chronic illness. One step up, two steps back has been my reality for many, many years, and learning to live life in a way that rarely resembles a straight line is an acquired skill.

Along those lines, do you want to know my reaction when my doctor informed me my mold markers were up and I needed to head down the chute step 2? I basically shrugged. Honestly, I think he was more upset than I was. Now, do not for a second mistake that as me being super chill. I’m not. But I’ve also been in this movie for a long time, and I know setbacks are built into the plot. In fact, they happen so often, I wouldn’t even call them plot twists. They are simply part of the narrative.

So, after spending the better part of two years clawing myself up to the step that would take me to the finish line, I will be spending an indeterminate amount of time trying to get back to the same place. It’s already been about six months, and recent lab work says I’m not there yet.

Is that discouraging? Of course. But what are my options? I can sit around complaining and feeling sorry for myself, or I can stay the course, and do the things I need to do. And I can do more. I can continue trying to live my life with as much joy and fulfillment as my health will allow on any given day. On good days I can volunteer. I can write. I can laugh with a friend or make a dinner with love for my husband. On bad days I can give gratitude I have the ability to rest when I need to.

Keeping this perspective is not easy. In fact, you could say it’s a skill I work on developing every day. When I’m not feeling well my automatic response is to get frustrated. Then I take a step back and check myself. I think about my problems relative to the world’s problems. I think about the people dealing with things far worse than what I’m dealing with. Even on my very worst days, I know there is somebody else having an even worse day. So, how can I possibly feel sorry for myself? When I’m able to get that perspective, my health problems don’t feel as consequential. I don’t feel as burdened. And I’m more able to see possibility.

Don’t get me wrong. Some days I want to put a steak knife in my eye and say f’ this. But really, what would that get me? Maybe a moment’s satisfaction, but no real peace. Yes, I’ve been at this a long time and I’m not where I want to be. Yes, I’m having a setback. But I’ve been here before and I know setbacks are only temporary. What’s lasting are the coping skills this (and all my setbacks) help me develop. And let’s face it. You don’t have to be in a health situation to find yourself at the bottom of one of life’s chutes. Setbacks are everywhere, so I count myself lucky I’ve learned how to face them.

This May Have Done Something.

Well, guys, I’m feeling pretty cocky today. Yes, I tolerated one spray of Stevia in my nose. Living large now. Ha. (If you don’t know what I’m talking about, check out my previous post).

If you’ve been reading along, you know I’ve had a mold relapse that includes the settling of a difficult to treat mold colony, called MARCoNS in my nasal passages. For people who actually tolerate medication, this colony is eradicated via a prescription nasal spray. People like me who get sick from even being in the vicinity of medication attempt to treat it with a nose spray called Xlear, which is basically Stevia.

Well, one single spray has been putting me down in a major way. My doctor thinks it’s because mold illness has thrown my immune system out of wack, and recommended high dose vitamin C infusions to calm it down.

I’ve done these infusions in the past and haven’t noticed a big difference in the way I feel. Given that, and the fact they are expensive and time consuming, I put them on the back burner.

However, replaying the tape, we realized I was doing the infusions the last time I was being treated for MARCoNS. During that time, I was tolerating 8 sprays of Xlear per day. So now, my doctor is wondering if the infusions were actually doing something in the background even though I wasn’t feeling much of anything.

Who knows for sure? At any rate, I had been sitting on my hands doing nothing to deal with MARCoNS, and I was feeling terrible, so I figured I’d give infusions another try. I didn’t have much to lose save a few hours and a few bucks. Ok, many bucks, but desperate times…..

That was yesterday afternoon. Then I got brave and decided to take one spray of Xlear before bed.

Low and behold, I woke up feeling the best I have in weeks. The Xlear didn’t make me sick, my brain feels more clear and my fatigue is improved, along with my overall outlook on life. Feeling a little better makes me realize just how horribly I’ve been feeling.

I’m pretty sure this is not a placebo effect, as I didn’t have much faith the infusion would do much for me based on past experience. I also know this is not an overnight cure and isn’t likely to last. (BTW, that’s not pessimism, it’s just the reality of knowing how life with chronic illness goes. Good days. Bad days. Wash. Rinse. Repeat).

I’m tempted to try two sprays of Xlear tonight, but I don’t want to push it. Experience tells me to keep it slow and steady. I’m in a hurry to get this MARCoNS infection in the rearview, but I also know this is one of those situations where I need to slow down to speed up. It’s annoying, but sometimes it’s the only way.

So, one spray tonight. Then we will see. I need to work my way back up to eight sprays per day, so I have a ways to go.

I’ll get there.

P.S. If you are wondering about my infusion: The prescription my doctor ordered is:

15 Grams Vitamin C, 2000 mg Glutathione, B vitamins, calcium, magnesium.

It goes without saying (although I seem to be saying it), I am not a medical professional and this isn’t medical advice. My doctor says this is right for me at this time, but if you think IV infusions could help you, please consult with your doctror.

I Just Ordered This Bad Thing.

The mold remediation of our home is just about complete. All active mold has been removed and affected areas have been patched, drywalled, painted, etc. All air ducts have been cleaned, and the entire house has been fogged to kill any remaining mold in the air and on surfaces, furniture, etc. The only wall to wall carpet we had was on the stairs, and that has been removed.

Now we are entering phase two, which is remediation of our clothes, bedding, etc. This task felt incredibly daunting to us, to the point of paralysis. As I’ve mentioned in previous posts, when you have mold in your home, it does not remain isolated to the place where it’s visible. Invisible spores are released into the air and circulate throughout your home. Which means every single thing you own is touched by mold to a certain degree. If you are healthy, this probably isn’t too much of a problem, but if you suffer from mold illness, commonly referred to as CIRS (Chronic Inflammatory Response Syndrome), any mold is a problem and needs to leave.

Since I am tired most of the time and suffer from brain fog a lot of the time, I became overwhelmed and more or less shut down any time we discussed dealing with our stuff. And for this reason, we have been lax on this front. And when I say “we” I mean “me” because I led the charge on inaction.

Thankfully, my husband is a man of action, and he decided we needed to get over ourselves and figure this out. Also thankfully, by “we” he meant “him”, as he could see I wasn’t getting anywhere. He got a bone in his teeth and went deep on research and developed an action plan based on an evidence-based mold remediation protocol developed by Dr. Close. You can learn about about it here.

This is what we (ok, mostly my husband) are doing:

  1. Post-remediation, my husband ran diffusers with an essential oil blend called Combat Blend for 24 hours in each room of the house in order to catch anything the remediators might have missed, or anything still lingering in the air, which can happen after remediation. This would also kill any mold on drapes, furniture, etc. He did this while I was away, as there was a chance the oil could give me a bad detox reaction, which unfortunately, it did when I returned home. It was severe, but that’s a story for a different time. My husband did the homework, so you don’t have to. This is the best diffuser, and this is the essential oil. For you Young Living essential oil people, this is equivalent to Thieves Blend, but less expensive. My husband purchased the diffusers and essential oil from Diffuser World. Cheesy name, I know, but they are extremely knowledgable about essential oils and mold remediation, and are very familiar with Dr. Close’s protocol.
  2. We add one ounce of a product called EC3 Laundry Additive to every load of laundry. EC3 is natural, non-toxic, and kills mold.
  3. Once per month, we will use EC3 Mold Solution Concentrate to spray down anything that can’t be washed: drapes, area rugs, bedding, throw blankets, plush furniture, dry clean only clothing, etc. The diffusing covered most of this, but we will hit it with EC3 on an ongoing basis for prevention.
  4. We ordered this 100% organic, non-toxic mattress from a company called Avocado Green. I’ve never ordered a mattress in the mail, but it was rated number one by Consumer Reports, and there are literally thousands of very positive reviews on the website. Also, they have a very generous return policy — one year. This not an ad, by the way. Just sharing my rationale. I’m not going to lie, it was expensive by the time we added in the mattress pad, base, pillows, pillow covers, etc., but we decided it was worth it, as I spend a solid eight hours per day in bed. And we know our previous mattress has been in several houses with water damage (and therefore mold), so we decided it had to go.
  5. Since I was diagnosed with CIRS about a year ago, we have run air purifiers in every room of our home, and will continue to do so. There are many air purifiers in many price ranges. My husband researched this heavily, and settled on a brand called Blueair. We do the product line called Blue. You need different sizes based on the sizes of your rooms. My husband decided on Blueair because it got good ratings, and was middle of the road price-wise.
  6. My husband changes our air duct filters every 30 days whether they look dirty or not.
  7. We are going to institute an ongoing schedule for diffusing essential oils. Dr. Close recommends eight hours per room once a month, but we will need to figure out how to make that happen now that we know it makes me temporarily sick.

Ugh.

What a process, right? But for the first time since I was diagnosed, I feel like we have a handle on how to keep our environment safe for me, and I can only hope it leads to more healing than I’ve experienced in the past year, which frankly, hasn’t been that productive. More on that later.

In the meantime, I’m going to kick back and enjoy our clean home and air.

Mold Is Insidious.

We are currently doing a quarantine within a quarantine. We had to leave our house for two weeks while it got remediated for mold (see previous post). When researching for a rental home, I was looking for two things: sanitization, and the best chance of not having mold.

For the latter, I looked for a house on the newer side that did not have any wall to wall carpeting or drapes (they hang on to mold). I also asked the rental agent about any history of mold and/or water damage.

The house I landed on seemed to fit the bill. It is all wood floors with only a few area rugs. Blinds instead of drapes, and it got high marks for being clean as a whistle. Also, the rental agent assured me there had never been a mold problem.

You can never know for sure if mold is present, as it often is not visible and does not give off any odor. When we entered the house, it seemed fine as far as we could tell. We brought several air purifiers just in case, though.

I was feeling very crummy when we arrived here, most likely due to the new exposure at our house, and I was hoping a new, hopefully mold-free environment would help improve the way I felt. Unfortunately, I felt the same, maybe even worse.

About three days in, I was laying on my back practicing yoga in the master bedroom. I happened to turn my head to the side and that’s when I saw the above water damage stain on the master bath ceiling. I have no idea how long that stain has been there, but it’s safe to assume it led to mold, as mold follows water. Generally, it forms within 24 to 48 hours of water damage.

So, this house likely has mold.

Ugh.

And remember, I have a genetic defect that makes my immune system unable to “see” mold. So, if there is mold around, I’m absorbing it and am not eliminating it.

Yeah, I’m frustrated. Any mold I absorb adds to my toxic burden, which will make it harder to get well.

Some people with mold illness get so frustrated with trying to keep their environment safe, they literally resort to pitching a tent in their yard. Some people walk out of their houses with nothing but their credit cards and never look back. I’ve been tempted to do both, or to move into an RV, but I’m not quite that desperate. Yet.

On the bright/hopeful side, our house will be remediated by the end of the week, and I should finally be in a mold free environment for the first time since I was diagnosed with mold illness last summer.

This will not be an overnight fix for my health. In fact, I still face a very long road, but I’ve come to understand recovery is impossible if I am not in a safe environment. So, here we go with step one.

Wish me luck.

This is a Problem.

Before I start on the topic at hand, can I just say it seems somewhat ridiculous to be writing this blog in the midst of the pandemic. I am literally overwhelmed by the daily devastation, and in that light, my health problems seem irrelevant.

But the fact of the matter is I’m sick, and if you’re reading this you probably are too, so we have to keep moving forward, pandemic or not.

About those photos. The first is the hallway that’s between my bedroom and office. And guess what was just discovered there? Yep, mold. In a large quantity. And the second photo is an air vent in my office. Mold was just discovered there too. So, the two places where I spend the most time. Nice, right?

We just moved to this house a few months ago, and we had it inspected for mold by three different people prior to moving in, and nothing was found. Then we started our mold best practices practically from day one — air purifiers in every room, changing the air filters every 30 days whether they look like they need it or not. And of course, I was on my routine of taking mold binders, going to the sauna, etc.

But a month after moving, my mold blood marker called C4a became elevated to nearly double to what it was prior to moving. If you’re a numbers person, anything above 2830 is elevated. Mine’s at 5400. It has been as high as 8300, but was down to 1900 prior to moving. I also have been feeling worse than usual lately, so something is definitely up.

To that end, we had two more mold inspectors crawl all over the house, and between the two of them, they found the smoking guns. The ones I already mentioned, and a basement ceiling, which happens to be below the room where I spend a lot of time during the day. How am I doing?

So, we need to remediate, which is no small process. Dealing with the air vents and ceilings is the easy part. Dealing with our contents is the difficult and overwhelming part. What do I mean? Well, if you have mold in your house, it means you have mold in your air, which means you have mold on literally everything you own. Think about that for a minute.

As I look back, I realize all of the houses we’ve lived in for the past 15-plus years have had mold. That means furniture we have moved from house to house has also carried mold. My husband and I have known this for a while but have never gotten serious about dealing with it because it’s so incredibly overwhelming. It’s paralyzing. Seriously, think about it. Every book, every article of clothing, ever piece of furniture, every file folder, our computers. Mold. Mold. Mold.

Our rationale in the past has been that we’ll just get the house mold-free and hope that’s enough. Well, I have been treated for CIRS (mold illness) for nearly a year, and I’m literally no better, so we have to get more serious about our remediation.

When I think about what’s involved I become so overwhelmed I literally want to get rid of everything and start over. But that’s not very practical. So, we are going to do the best we can. Or, I should say, my husband and the remediators are going to do the best they can. Remediation stirs up mold, so I’m not supposed to be around while it’s happening.

So this is the loose plan. My daughter and I are going to leave for a couple of weeks. Not what I want to do during a pandemic, but I’m picking my poison. While we are gone, the remediators will fix the moldy areas, and then literally wipe down every single surface of our house from top to bottom. Every wall, every window and pane, every piece of woodwork, every hard piece of furniture, every piece of art, every bathroom, the kitchen, and every inch of the floor. Can you even imagine?

Then another team will take all the contents out of our basement, wipe them down and place them in clean plastic bins (in case they miss any mold) and bring them back inside. This process needs to take place outside because mold is released into the air during cleaning, and we don’t want that to happen inside.

If remediation is not done properly, the air in the home can actually be worse (i.e. contain more mold) than before remediation. So, remediators have to be selected and vetted very carefully, and we are working on that process now.

Needless to say, I am beside myself. This is going to be time consuming and expensive and involve staying in a rental home during a deadly viral outbreak.

This is the part of the post where I usually try to say something positive to put it all in perspective. I could do that, but I’d be faking it. Sure, there are worse problems, and I understand that. But this pretty much blows, and sometimes I just need to say that.

And now that I’ve said that, I can be a little more positive. It could be so much worse. There’s always something worse. I have food, clothing, shelter, love and faith. Life’s basics that so many people lack. And we have the ability to ride out the pandemic at home. So, while the mold situation isn’t what I would hope for, I really can’t complain.

Expelling Mold From My Body: Three Bad Options. (At Least for Me).

As I mentioned in my previous post, I am full of mold, which is not good. Mold does not want to leave the body by itself, so it needs help in the form of medication that binds and removes it.

If you tolerate the medication, it’s a good process that leads to positive results. If you don’t tolerate the medication, it’s a heinous process that leads to less than positive results.

If you’ve been reading for a while, you will have already guessed I fall into the latter category.

Ugh.

So, here’s how it went for me.

The first photo is cholestyramine, which is actually a cholesterol lowering medication. However, it also binds toxins, and is regularly used for that purpose. The recommended dose for mold binding is about a tablespoon twice per day. The amount that makes me incredibly sick is in my hand above. Hard to believe, isn’t it?

Why does it make me sick?

That’s a good question. Either I’m reacting to the cholstyramine itself, or the medication is pulling toxins out of my body faster than my body can process them. Either way, it’s bad. When I’m sick from cholestyramine I experience the follwing: flu like symptoms (body aches, general malaise), fatigue, headache, severe fatigue behind my eyes, difficulty with word finding, slowed speech, a general lack of a will to live, and I feel like I’m being poisoned (I’ve never been poisoned and have no idea what it feels like, but that’s the thought that always comes to me when the medicine makes me sick). Sounds like a picnic, right?

I was actually willing to tolerate all of that if it would lead to feeling better, but I got done in by another side effect: diarrhea. Sorry, getting personal now. I’m talking get-up-and-run-to-the-bathroom-diarrhea. So, that was game over for cholestyramine. Not to mention, my doctor wasn’t sure I was even accomplishing much with the micro, micro dose I was taking.

Enter Welchol. Different drug, same purpose. Bind mold. Well, this had the exact opposite effect on my GI tract. Total shut down. I’m talking no trains running at all, which is a very bad side effect, because once the mold is bound, it’s supposed to leave in the stool. So, game over for Welchol too.

Enter Okra Pepsin from Standard Process (third photo). This a non-pharmaceutical mold binding agent. It does not give me any unwanted GI issues, however, if I take too much I get many of the same side effects as I did from cholestyramine, so I need to be very careful. I slowly worked up to three caps per day, but every now and then I get sick and need to back off.

The downside is Okra is not nearly as effective as Cholestyramine or Welchol, so it’s going to be a slow process. Very slow.

In fact, some days I wonder if I’m making any progress at all. But here are my options. Take something more effective that basically debilitates me, or take something less effective and still have the opportunity to function. I’ll take door B. It’s not ideal, but nothing about chronic illness is.

This is my life, at least for now. So, I will continue to take it one day at a time, one dose of Okra at a time, and I will continue to hope and pray for the best.

Mold Could Be My Smoking Gun.

I feel sick just looking at this photo.

At any rate, I was diagnosed with Chronic Lyme Disease in 2013 by one of the top Lyme specialists in my state. He treated me with the same protocols he has used successfully for decades. However, I didn’t get better. In fact, I got much worse. My doctor was perplexed by my lack of improvement, and eventually ran out of ideas for how to help me.

Fast forward to 2019. We moved to a new state and I started with a new doctor who had a new idea about why I wasn’t getting better.

My blood marker called C4a was elevated, which is not uncommon for Lyme patients. BUT, an elevated C4a can also be a marker for toxic mold illness, also knows is Chronic Inflammatory Response Syndrome, or CIRS. In that light, my new doctor ran a full mold workup, and I tested positive on every single test.

Among other things, it turns out I have a genetic mutation that prevents my immune system from recognizing any biotoxin, including mold and lyme. Also, part of the mold work up includes a nasal swab for an infection called MARCoNS that lives in the nasal passages and is associated with mold illness. I have that too, in high levels.

This is massively significant.

As I replay the tape of my life, I can see I have lived in several houses that have had water damage and therefore mold. And since my immune system does a very poor job of eliminating mold, I’m basically carrying a lifetime of mold in my body.

Not good.

I asked my doctor if my mold diagnosis was a headline or a bullet point, and he said it is most definitely a headline. In fact, he believes my untreated mold is the reason I haven’t been able to regain my health.

As it turns out, many of my symptoms are commonly associated with both Chronic Lyme Disease and CIRS. And in cases where a patient tests positive for Chronic Lyme (which I did), doctors often don’t look further for other causes of illness (which happened to me).

It turns out we likely did enough to treat the lyme, and my remaining symptoms are due to the mold. Which means that treating the mold could change everything.

That’s the good news.

The bad news is my mold status has rendered me exquisitely sensitive to medication, which is very common. And mold doesn’t leave your body by itself. It needs to be shown the door through the use of of medication that binds it and pulls it out. That’s where the sensitivity to medication comes in. I become massively sick from micro doses of binding medication.

This is a problem that will greatly hinder my ability to recover. My doctor says it usually takes one to three years to recover from mold illness, and it’s more likely I’m on the three year plan.

Speaking of the plan, it goes like this.

Step 1: Remediate your environment. We’ve done that. Although, we recently moved and just discovered mold in the house in spite of having numerous inspections prior to moving. So, we are re-remediating. Ugh.

Step 2: Use binders to pull mold out of the body.

Step 3: Clear MARCoNS using a prescription spray.

I’ve been working on my mold program since summer of 2019, and frankly, I’m not doing well with any of the steps. My mold markers in my blood became elevated after we moved, which means I’ve had another exposure.

I was not able to tolerate the most effective binders. The binder I do tolerate is called Okra Pepsin, and it is less efficient that other binders, and I’m taking a pretty small dose, so I can’t imagine I’m making much progress.

I can’t even attempt Step 3 yet. I tried the nose spray, and became very sick after only two days at a fourth of the recommended dose. So, I need to get further along on Step 2 before I can try Step 3 again.

In short, my latest mold exposure along with my inability to tolerate the binding medication is putting me on a long and winding road. That is most certainly discouraging.

But, if my doctor is correct, I have a tremendous opportunity to improve my health if I keep on trying. Think about it. I have been collecting mold for years and have not been doing a single thing to get rid of it. That’s really good, right? At least that’s the way I see it. In my world, discovering an untreated condition provides an opportunity for healing that didn’t previously exist.

I’m going to hang on to that thought, even if my progress is slow and not immediately evident.