I Spent Most of Last Week Here. And Not by Choice.

It was a bad, bad week.

For those who need a refresher, I have a terrible problem with my vestibular system — the system that helps your brain process motion and sensory information and helps with balance. This is separate from my regularly scheduled issues with Lyme, Mold, CIRS, etc.

It’s complicated, but I’ll try to make it simple. I have two problems. First, I have severe nerve damage in my left ear — the result of a virus. Who even knew that could happen? It turns out ears are critical to balance, as they are the first to detect motion, and then send signals to the eyes to make adjustments in response. Since I have nerve damage, the memo gets to my eyes too slowly, which makes me extremely prone to motion sickness. More on that later.

Problem number two is I have a ridiculous condition called Mal Debarkment Syndrome, or MDDS. MDDS typically strikes after you’ve been on a cruise. While at sea, your brain adapts to the motion of the ocean, but when you return to land, your brain is supposed to re-adapt to land mode. For some people, this re-adapting does not occur, and you end up feeling like you are on a boat 24/7 even when you are on land. This happened to me, most likely because of the nerve damage in my ear. (To clarify, it’s not uncommon to experience a rocking motion after being on a cruise, but for most people this resolves in a matter of days. With MDDS the rocking does not go away).

MDDS is poorly understood and there is not much treatment. Fortunately, Mt. Sinai Hospital in New York has a treatment program which helped me. After treatment there to knock the MDDS down, I started Vestibular Therapy, which is basically PT for the brain, and helps with the nerve damage. The damage is irreversible, but the side effects can be diminished with therapy.

My Vestibular Therapist told me it’s not possible to fully recover from MDDS without an intact vestibular system, which I don’t have because of the nerve damage.

I have been living with MDDS for about a year and a half, and it has been extremely challenging. I’m learning it’s a cycle of beating it into submission only to have it flare up again. Typically, I have a flare up every four to six weeks. The flare ups can last anywhere from hours to days to a week or more.

I am not a good enough writer to adequately describe the misery of an MDDS flare up. I have endured all manner of physical and emotional suffering these last 11 years, and MDDS takes the cake.

It generally starts with a sensation that something feels “off” in my head and escalates from there. The symptoms I experience during a flare up are:

  • Intense nausea (if 1 is no nausea, and 10 is vomiting, I am around an 8 all day and all night).
  • Pressure behind my eyes and sensitivity to light that is so extreme I have to wear sunglasses in the house.
  • An inability to look at any screen (TV, computer, phone), as this intensifies the nausea.
  • An inability lay down when I sleep, as this intensifies the symptoms. Sometimes I sleep in a chair, sometimes I sleep propped up in bed.
  • A strong gravitational pull inside my body that makes me feel off balance all the time.

Those are just the physical symptoms. Then there’s the emotional distress. It’s not uncommon for people to be unable to shake their MDDS symptoms. In other words, their whole life is a flare up, as I’ve described above. So, I am “lucky” my symptoms come and go, but every time they come, they bring the fear this is the time they won’t leave. I can’t describe the terror of that. People with MDDS commit suicide, and I can see why. (I’m not in that place, so you don’t need to worry about me).

This last flare up was a bad one. It lasted a week, and I spent a large chunk of it in that chair, as movement makes everything worse. Thankfully, I found one thing that does not make my symptoms worse — reading a paper book, and that has been a saving grace.

So, spent a good part of a week in a chair reading. I realize that sounds relaxing, but it’s not under these circumstances. And the whole time I’m in that chair, the things in my life that I want and need to do are going undone, which can be such a blow because forward momentum is hard for me to come by. And that’s when I need to flex my mindfulness muscles by taking note of my thought patterns. When I catch myself getting frustrated I remind myself the problem is enough on its own. I don’t need to make it worse with my thinking. It’s already plenty bad. I’m not going to say I can mindfully move myself into a place of complete bliss and acceptance, but I can go pretty far in that direction. And it helps, it really does.

So that’s the story of of the flare ups. But MDDS and my ear nerve issue are part of my life every day, even when I’m not having a flare. I am not exaggerating when I tell you walking is just about the only activity that does not make me motion sick (and it does make me sick when I’m having a flare). Yesterday I got motion sick from a short bike ride. I got motion sick from Pilates (for about four days from one session), I’ve gotten motion sick from doing push ups, I’ve gotten nauseated in the bath tub, I got motion sick from five minutes on a Peloton. I get motion sick when things move in front of my eyes — traffic, a river current, the lines on the freeway, a country road with fences on either side.

Only rarely can I ride in a car without getting motion sick, so I drive nearly all the time.

And there are certain things that are simply off limits: amusement park rides, any kind of a swing (even a porch one), going on a boat of any kind, going on a ski lift or gondola.

Busses and subways fall into the “sparingly and with caution” category.

I have to take vestibular stabilizing medication when I fly, or flying would be out. (If you’re wondering, it’s Valium, so I can’t take that whenever I want to do one of the above activities, as that would be too much Valium. Plus, I don’t like the side effects).

Turns out those ear nerves are really important.

Aside from the motion issues, I seem to have permanent sensitivity to light now. I cannot watch TV without sunglasses, even when I’m not having a flare up.

I could get depressed about this if I wanted to. But I don’t want to. I want to live my life as best I can within the confines of what’s realistic for me now. It could be worse. There’s always something worse. And I try to keep that perspective. But I’m also sure to give myself plenty of compassion. Because while it could be worse, it could also be a heck of a lot better. And I’d be lying if I said that didn’t hurt. If I didn’t feel loss. It’s important for me to allow myself to feel those things. But it’s also important for me not to allow myself to wallow in those things, or become a victim of those things. It’s a fine line and I walk it every day.

Self-compassion. Perspective. Mindfulness. It’s the only way I can keep myself going.

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.

A New Beginning. Again.

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.

Onward.

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.

Just One More Strange Thing……

It’s been a while. That’s because I’ve been mostly unable to look at my computer (or any screen) since early January. In case you’ve forgotten, I was struck with a bizarre illness called Mal de Debarkment Syndrome, or MDDS. And yes, the syndrome is as odd as the name.

Very long story short, MDDS occurs when somebody gets off a cruise ship and their brain does not adapt to the change from a moving platform (the ship) to a stationary one (the land). Said another way, your brain thinks you are on a ship while you are standing still. I can tell you the brain is not fond of this situation. As a result, I felt 24/7 severe motion sickness and nausea that began nearly the moment I stepped off a cruise ship in early January. I felt like I was rocking when I was standing still, I got nauseated from looking at any type of screen, and basically, I was confined to a chair for all of January and February.

MDDS is uncommon, so there is not much treatment available, however, my husband found a program at Mt. Sinai Hospital in New York City. We went up there for a week of treatment the last week of February, which was the first available appointment. It was a long wait, but I was just grateful help was available.

There’s no way to finesse this. The treatment was completely bizarre, and if my husband had not been with me, I probably would have walked out.

It went down in a lab that looks like Frankenstein’s workshop. Take a look.

The first photo is the equipment that monitors and controls what happens in the second photo, which is a light proof booth. The booth contains a chair that can be spun by remote control. The treatment consists of different patterns of light being projected in the booth while the chair spins. The photo at the top of the post shows what it looks like in action.

It was not fun.

Basically, the way they treated my motion sickness was to make me exponentially MORE motion sick. It’s completely counterintuitive, and my husband and I could not fathom how in the world this was going to help me. Our only comfort was we were at a world class hospital, and the treatment was validated by research.

The first day was not promising. I became so sick from the treatment we had to stop early.

The second day was about the same.

By the third day we figured out a rhythm. Instead of the standard two hour treatment, the doctor broke my treatment into two – one hour sessions, one in the morning and one in the afternoon. Also, he slowed the speed of the light patterns, which also helped me tolerate the treatment.

At the end of the third day, we finally dared to hope a little bit.

I left each treatment feeling extremely motion sick and exhausted. I typically had to wait a while before I could even leave the building, which I’m doing in the photo below. And yes, I feel as badly as I look. My thought bubble is “are you f’ing kidding me?”

I left the final treatment feeling worse than ever. We were assured that was normal, and were told it could be a couple of weeks before we would know if the treatment was effective.

So, I arrived home feeling exactly the same as before I went to New York. Not exactly what I was looking for. I spent the first weekend home just as I spent the first two months of the year — sitting in my chair. I tried to keep the faith and not worry, but it was difficult. For the first time I began to panic that I might not ever kick MDDS.

The way my husband describes this phase is that my brain was like a snow globe that had been shaken up, and we just needed to hang in there until all the little flakes began to settle. I held on to this image, but I have to confess I was not feeling particularly optimistic.

Blessedly, the flakes began to settle about four days after my last treatment. It’s now about a month since treatment, and I’d say my snowflakes are at least 90% settled. I still have spells of dizziness and nausea, but they are completely manageable. I still hope for a full recovery, but if I never get any better than I am in this moment, I can live with it. Amen.

Double amen.

I am so incredibly grateful to the doctors at Mt. Sinai who had the curiosity, smarts and motivation to develop a cure for this bizarre, yet debilitating syndrome. I literally do not know what my life would look like if I hadn’t been fortunate enough to benefit from the treatment.

Lyme disease has ravaged my body and mind, however, I can usually manage to function to some degree, even on my worst days. By contrast, MDDS was fully incapacitating. Severe nausea and the sense you are moving when standing still simply cannot be powered through. Any movement at all, even simply turning my head, make everything worse. It was hell. If you read about MDDS, the words “devastating” and “debilitating” come up quite often, and I can tell you they are true.

I thought I saw the devil in my lyme and anxiety struggles, and I suppose I have, but MDDS was an entirely different devil, and one I hope to never see again. On that note, relapse is a very real possibility, so I have to take measures to try and prevent it — I cannot go on any type of boat, it’s best if I drive when in a car, and I need to take medication when I fly. This all adds a little hassle to my life, but I will take hassle over debilitation any day.

Now, with MDDS mostly in the rear view mirror, I can return to my regularly scheduled health problems, which is a blessing, odd as that sounds.