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.

It’s Been A Minute.

Ok, more like a year.

It’s interesting that my last post nearly a year ago is about how my brain fog makes it difficult to function. That pretty much sums up why I haven’t written anything in a year.

It’s been a time, and I couldn’t possibly tell you about all of it. Let’s just say 2019 was not my best year, and 2020 got off to a rough start. The headline is two significant things hapened:

First, we went on a cruise in January 2019, and it left me with a ridiculous condition called Mal DeBarkment Syndrome (MDDS). It’s as heinous as it sounds. Mal DeBarkment Syndrome basically means your brain doesn’t adapt to being on land after adapting to being at sea. The result is you feel seasick on land. 24/7. It’s incurable and can be extremely debilitating.

For the first two months I had MDDS, I was so nauseated I literally could not move from a chair, and only got up to use the bathroom or get food or go to bed in the evening. Yes, you read that correctly. Two months in a chair.

We found a treatment program at Mt. Sinai hospital in New York City, and I had a week of treatment there in late February 2019. The treatment helped but did not cure my MDDS and I had to return for treatment again in the summer.

In the course of being diagnosed with MDDS, it was discovered I have permanent nerve damage in my left ear, which likely made me more susceptible to MDDS. These are actually two different problems. Each with their own treatment plans. The MDDS causes nausea and makes me feel unbalanced as if I was on a boat. The nerve damage causes nausea of varying degrees of severity.

As of now, the MDDS is under control, and I am currently undergoing Vestibular Therapy (PT for the brain) for the nerve damage. The vestibular therapy helps, but it’s not a cure. I have periods where I feel just fine, and periods where I am debilitated by nausea. Generally, I’m able to string together three to four weeks of feeling well before suffering a bout of nausea that can last hours, days or weeks. I have been living with this uncertainty since January of 2019, and it’s likely to continue indefinitely. I’m learning to make hay when the sun shines, and rest when it doesn’t.

These vestibular issues have nothing to do with my regularly scheduled problems. And in some ways, they make me appreciate my regular problems, as they generally easier to power through than intense nausea and instability.

Speaking of my regularly scheduled problems, I have news on that front. In summer of 2019 I was diagnosed with toxic mold illness, also called Chronic Inflammatory Response Syndrome. THIS IS BIG NEWS. My doctor believes I have been suffering from untreated mold for years and believes it’s the reason I have not been able to regain my health in spite of so much effort. I hope he’s right.

I started treatment for mold last summer, and have had great difficulty tolerating the medication, so it’s going to be slow going. It’s extremely common for patients with mold illness to be exquisitely sensitive to medication, so I am not alone on that front.

My mold story is long and complicated and I will get to that in more detail in future posts.

For now, I just wanted to try and get back on the horse. Between the nausea and the mold treatment making me very sick I just haven’t had the will or ability to write much of anything.

But here we go. I’ve taken the first step, and I’m hoping I will have the energy and motivation to continue.

This is What My Brain Feels Like.

Lyme disease has not made me stupid. In fact, I am pretty sure I am just as intelligent as I was before I got sick.

However, lyme disease has made it incredibly difficult to access my intelligence.

Here’s the analogy. I know next to nothing about horse racing, but I did read Seabiscuit. In Seabiscuit, Laura Hillenbrand beautifully details a critical moment that occurs in every horse race. It’s the moment when the jockey determines it’s time to make a move. Hllenbrand describes it as asking the question of the horse. Are you ready to run?

When I want to do something that involves intellectual engagement, I’m basically asking the question to my brain. I’m asking if it’s ready, willing and able to work with me. And guess what? More often than not, the answer is not so much.

This is one of the many manifestations of the lyme related chronic fatigue I experience. I am so very tired. And when I try to engage my brain in something like writing this blog post, I have to fight through layers of brain inertia. When I reach for a thought, what I land on feels like a cloud of dead gray matter. Nothing happening. Nothing going on. The question falling on unwilling ears.

I have no idea what my IQ is, but I know I’m not a genius. I’m probably of average intelligence. But I’ve always felt I was blessed with a quick mind, and that’s my competitive advantage. I can very easily read a room or situation, connect dots, see a problem and formulate many possible solutions. When I was in advertising, I never thought I was the smartest person in the room, but I often believed I was the quickest, and that served me very well.

But now my brain doesn’t feel so quick. It’s like a car stuck in neutral. When I’m ready to drive, my brain isn’t. And on those occasions when I do get my brain into drive, I am often left mentally exhausted by the effort of engaging in whatever I engaged in.

Is this frustrating? Yes. Double yes. Makes me crazy. Is there much I can do about it? Not really sure. I’m doing everything I can to defeat my lyme and fatigue issues, but so far I’m not winning that battle.

In the absence of a cure, patience and self-kindness are the only remedies that feel plausible at this point, and I exercise those with abundance. I use my brain when I can, I rest it when I need to, and try not not get too whipped up about whatever is or isn’t happening brain-wise.

Do I like having to operate this way? Absolutely not. It’s very inefficient, unpredictable and non-productive. But I can howl at the wind all I want, and it’s not going to do a damn thing to help me concentrate on a day when my brain is encased in fog.

So I don’t howl. I don’t whine. I just treat myself with kindness, and wait for a better day.

It always comes.