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.
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.
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.
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.
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.
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.
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 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.
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.
I’ve been very lame about dealing with my lyme disease for the past year and a half or so. Our life got busy, and there always seemed to be something more pressing than lyme disease. Probably not the best idea. Really, what’s more pressing than trying to restore your health?
Time to re-prioritize and put some focus back on my healing. The problem was where to begin. For starters, we relocated across the country last summer, so I had to find a new doctor here. But that’s just a logistical issue. The root of the problem is I don’t know who to trust anymore. I’ve seen my share of doctors from across the spectrum — mainstream western medicine doctors to functional medicine doctors to homeopaths to chiropractors to acupuncturists to “witch doctors.” And they have each given me reasons to both respect and revile them.
And let’s be real here. None of them has cured me. Yet. And I’ve been at this for nearly 10 years.
While I didn’t know where to turn, I decided that doing something, even if misguided, is better than doing nothing. I took stock of the variety of doctors I’ve seen in the past, and to my surprise I decided to see if Western Medicine had anything to say for itself. It’s been a while since I’ve talked to Western Medicine doctors about my lyme and GI issues, and I wanted to see if anything had changed.
In a word. No. First, I met with a highly recommended western medicine doctor. Nice guy, but he’s not up to speed on the latest treatments for lyme, and he had absolutely no idea about what to do about my gut. He took a bunch of blood and didn’t have any recommendations. Strike one.
Next, I had a consult with a GI doctor. Again, nice guy. But he literally told me there is nothing that can be done about my GI problem, which was diagnosed by the Mayo Clinic as Idiopathic Intestinal Psuedo Obstruction.
Let’s pause on that for a moment. First, Idiopathic = No known cause. Pseudo = fake. So, basically, a $30,000 work up at the Mayo Clinic determined I have a fake intestinal obstruction of unknown origin. Does anybody think that’s a real diagnosis? I don’t. Neither does my husband. I think it’s a symptom, and my husband says it’s an apology for not being able to figure out what’s really wrong.
Incidentally, every lyme doctor I have consulted with believes my GI problems are related to my lyme infection. They also don’t think Idiopathic Intestinal Pseudo Obstruction is a real diagnosis.
Anyway, that turned out to be a big no thanks to standard western medicine doctors.
I researched more, and came across a gem of a doctor. He began practicing as a Western Medicine doctor, then suffered a number of health issues that Western Medicine had no answer for. That led him to Functional Medicine, which is the practice of finding root causes for health issues vs. the Western Medicine model of treating symptoms with pills.
My doctor found healing in the Functional Medicine approach, which inspired him to become trained and certified in Functional Medicine. So, he brings both Functional and Western Medicine perspectives and capabilities, which I believe is a powerful combination.
My first appointment was two hours. I told him my story, and he took 25 vials of blood.
The results were encouraging. Yes, he found a bunch of things wrong with me, but the things he found correlate to my symptoms, so A), I’m not crazy and B) there’s hope for improvement.
Among the more notable findings:
I am still testing positive for lyme disease 14 years after the tick bite, and 6 years after starting treatment. Yowza. FYI, I tested positive on the CDC- approved Western Blot. This is an important distinction, as there are many lyme tests out there, but the Western Blot is the only one recognized by insurance companies, the CDC, and Western Medicine in general.
I have a pattern of reactivated Epstein Barr Virus (EBV), the virus that causes mono, which I had in college. The deal is the virus lies dormant until the immune system lays down the welcome mat because it’s busy fighting another fire (i.e. lyme disease). This could help explain some of my fatigue issues. Yea.
I have raging cortisol (stress hormone) from the moment I wake up until the moment I go to bed, most likely because my body is working so hard to fight lyme.
The environment in my gut is basically toxic — the balance of bad to good bacteria is tipped so heavily toward bad that when I take probiotics they die. Literally. The bad guys just mow them down. As a result, I am not able to repopulate my gut with good bacteria, which means the bad guys are running the show. Which is not good.
I have markers for mold, which is not surprising because lyme makes it difficult for the body to process toxins.
I have other markers for lyme beyond the lyme test.
And those are just the highlights. I can’t get in to all of it or we’d be here all day.
This is such a good illustration of the way lyme acts as a wrecking ball to my body. I did not have any of the above problems before I had lyme disease. Not one.
That said, I find this information helpful and it gives me hope. My new doctor is discovering things other doctors haven’t — EBV and mold to name two — so that means new opportunities for healing. I know for a fact I still have lyme, so I’m motivated to start treatment again. I believe in my doctor, and he believes in me, and I have the deepest hope something will be different this time.
However, something is the same, and that’s the giant list of supplements my doctor is recommending (see the color coded sheet in the photo). This is very typical. Every time I start with a new doctor, they take 25 vials of blood, find 25 things wrong and recommend 25 supplements. Do the supplements work? Heck if I know. I’m not better, so that’s evidence to the contrary. However, I have not managed to lick lyme, which is the great disrupter, so it’s hard to know.
On that note, we are taking a two pronged approach: 1) Kill the lyme, 2) deal with what the lyme did to my body, and I am taking supplements on both fronts. Will this new round of treatment bring new results? Again, heck if I know. But one thing I know for sure. Doing nothing will achieve nothing. Doing something might accomplish something.
So, I’m taking the pills. Again. All of them.
I’m going to stay the course until the end of summer. I don’t expect to be cured by then, but I would hope to feel some improvement. If I don’t, my doctor and I will have a come to Jesus to discuss whether I am making progress or just swallowing pills.
That’s pretty much it. New beginning in progress. I have been at this too long to believe in miracle cures, but I am hopeful this new round of treatment will bring slow, incremental progress. I didn’t get into this overnight, and I’m not going to get out of it that way either.
P. S. Now the disclaimer. Those supplements were prescribed to me by my doctor based on specific test results. If you think any of those supplements would be helpful for you, please, please, please discuss with your doctor, as I am not qualified to provide medical advice.