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.
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.
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.
I look like I’m just taking a cat nap, right? Actually, I’m in a drug-induced haze. In fact, at this moment, I felt so drugged my lips were tingling.
Let me back up. Per my previous post, I am currently enduring my second round of the vertigo rodeo. Typically, vertigo is treated with a medication called Meclizine. I, however, am incredibly sensitive to medication, particularly those that can cause drowsiness, as Meclizine can, so I held off on taking it.
But I’m on day 12 of being more or less house bound, and I really needed to get out to take care of a few things yesterday. So, somewhat against my better judgement, I decided to take half a Meclizine pill that my doctor had prescribed to me in what he called a “grandma dose”. No offense to the grandmas out there.
At any rate, half a grandma dose proved fully too much for me. I got so tired, I was in a middle-of-the-night sleep in the middle of the day. My husband took this photo when I woke up, and I was completely dazed and confused. And this was a full TWELVE HOURS after I took half the grandma dose. And this was my second nap of the day. I managed to stay awake until I crashed for good at 8:30 PM, fifteen hours after first taking the medication.
So, obviously, drugs are not the answer for me, and I’m just going to have to gut this vertigo out. Tomorrow, I’m going in for a procedure called the Epley Maneuver, where a physical therapist moves your head in a precise pattern that’s supposed to re-align your inner ear crystals that apparently go akimbo when you have vertigo. It helped me the last time, so fingers crossed it will work again. (If you’re wondering, I didn’t go for the Epley sooner because tomorrow is the first appointment I could get. We live in a small town and apparently the physical therapy place is a hot ticket).
Even if the Epley Maneuver helps, it won’t be instantly. My experience is that vertigo recedes slowly. It’s not like flipping a switch.
In the meantime, I’m doing my best to remain mindful and in the moment. I continue to remind myself this is far from the worst thing that could be happening to me. I remind myself there are many people dealing with much bigger problems, and I have compassion for them.
I’m doing my best to let go of my plans for how I was going to be kicking off my year, as I definitely had bigger things in mind than sitting around.
But here’s the simple fact of the matter. Whether I like it or not this is what’s happening now. And the more I can embrace it and let go of what I think could or should be happening now, the better off I’ll be.
Easy to say. Much harder to do. But I’m giving it my best shot.
I started out 2018 with a horrible case of influenza. I was so sick I was hardly even aware it was New Year’s Eve. Needless to say, I did not celebrate in any way.
This year we were on a family cruse on New Year’s Eve, and we had the most wonderful evening. Just before midnight, the captain stopped the ship across from a Mexican island that is known for its New Year’s Eve fireworks display. We crowded the deck rail, the music was thumping from the pool party behind us, the countdown began, and at the stroke of midnight, the fireworks started, the ship’s deep horn blared for a good thirty seconds, and we popped champagne. It was a fantastic moment.
As I stood on the ship’s deck, I took a minute to be grateful for how much better this year was than last. What a difference a year makes.
Then this happened.
I should back up for a moment.
I am very prone to motion sickness, and have vomited over the side of many boats (my husband is a big boater, so water is an inevitable part of my life). I am also extremely sensitive to medication, so I cannot tolerate any of of the sea sickness medications. I have tried all the natural stuff — the wrist bands, ginger tea, acupuncture, acupressure, essential oils etc. I even tried this thing called a Relief Band, and it actually made me seasick when I tested it on land!
Given the above, a cruise might seem an odd choice, but we’ve been on two before and I did not get seasick either time, as those ships are large and relatively stable. But for whatever reason, the third time was not the charm. Quite the opposite, actually.
I had intermittent seasickness throughout the cruise. But the situation was exacerbated when we made a stop in Cozumel. We wanted to escape the tourist trap of the port, so we took a ferry across to Playa Del Carmen. I have taken this ferry ride twice without incident. But once again, the third time was not the charm.
By the time we got to Playa I was so nauseated I had to lay down on a bench for a while. I recovered enough to walk about around and hit our favorite spots in Playa, but the ferry ride back to the port was in the back of my mind the whole time. I told myself the seas would be more calm by the time we went back.
Wrong. They were worse.
The boat was seriously rocking, water was rushing in and people were screaming. I did my best to just focus on the horizon and but pressure on the acupuncture point for nausea, but to no avail. I was a wreck by the time we got back to the ship, and thank goodness there were still several hours in port before we sailed again, and the stillness gave me time to recover and enjoy the rest of the evening.
The story gets better before it gets worse again. On the better front, I only had mild motion sickness issues for the rest of the trip, and we really and truly had a fantastic time. One of the best vacations ever, even with the motion sickness.
On the worse front, things went dramatically downhill once we got off the ship. That’s right. When we got off. I’ve had that experience before. When my husband and I are on our boat for an extended period, I get “land sick” when we get off. It’s usually no big deal. I just feel like I’m rocking for a few days, and then it’s over.
This was entirely different. I became increasingly nauseated with every passing moment of being off the ship. By the time we got to our gate at the airport, I basically couldn’t move. I just slumped in a chair with my eyes closed until it was time to board. The flights home were basically a nightmare. I either slept or just stared straight ahead. No looking out the window. No reading. Way too nauseated for that.
I figured it was just a more severe case of my usual “land sickness” and expected it to pass in a few days. I was wrong about that. I spent the first few days home more or less unable to move, read, or look at my phone or computer. Anything that engaged my eyes made me feel even more nauseated.
This is pretty much how I passed the time.
Each day, I kept thinking this is the day I’ll feel better. When the nausea didn’t pass in a week, I finally went to the doctor and he confirmed what I was afraid of — Vertigo.
I had Vertigo once before. You can read about it here.
Vertigo is unpleasant. I am nauseated from the time I get out of bed in the morning until the time I return in the evening. The severity of the nausea comes and goes. Sometimes I can semi-function. Sometimes I have to sit with my eyes closed. Today is a half way decent day, as I’m able to look at my computer, and type. I can’t always do that.
This is definitely not how I planned to start my new year. Pre-vertigo, I was focused on a year of health and healing, and this was not on the agenda. But it’s a wonderful reminder that much of what happens in life is not on our agenda. Sometimes the off-agenda things are unexpected happy events, and sometimes they are struggles.
But I can almost always find the upside in a struggle, and I’ll find it in this one too. For starters, I’m reminded how blessed I am to have the kind of life where I’m able to drop off the radar for a week or a month or however long this takes (there is no telling with Vertigo). Also, this little tangle with Vertigo helps me keep the rest of my struggles in perspective. I’ve learned to “power through” just about anything — stomach aches, fatigue, brain fog, even anxiety. But Vertigo cannot be powered through, as any type of motion makes it worse. So, I have renewed gratitude that most of my health issues are power through-able when necessary. And I’m grateful for the reminder that things could always be worse.
I used to be a runner before I was sick. When I was setting out for a long run, I’d get into a certain mindset. I’d tell myself to just settle in and not think about when it will be over because it’s not going to be over for a long time.
It’s that way with Vertigo. I’m not thinking about when it will be over. There is literally no telling. Instead, I’m settling in as if preparing for a long run. I’m letting go of to do lists and expectations for how I had planned to kick off my new year. Instead, I’m going to listen to my body and fall back on a strategy that has been immeasurably helpful to me over the years. Each morning, I’m going to ask myself a simple question. What’s possible for me today? Some days the answer will be a lot. Some days the answer will be a little. Some days the answer will be not much.
And I’m going to try to be ok with the answer. Whatever it is.
When I first became sick in 2009 , I weighed around 115 pounds. Some days a little more, others a little less. If you are wondering, I am 5’6″.
With every passing day of my illness, I weighed less and less. I was doing everything in my power to gain weight, yet all I did was lose it. This slow yet steady march of weight off my body caused immeasurable emotional distress. At a certain point, I began to fear my intestines were simply no longer capable of absorbing nutrition.
My hair started falling out. I was fatigued all the time. My menstrual cycle stopped for years. I stopped weighing myself. I just couldn’t look any more.
If you need a reminder, I have a motility disorder that either is or isn’t related to lyme disease, depending on who you talk to. When you have a motility disorder, food moves through your GI tract at a painstakingly slow pace, which means you feel uncomfortably full nearly all the time. And you get full from eating very little. Also, you have a lot of stomach pain, nausea and general discomfort. Sounds like a blast, doesn’t it?
It is against this backdrop that I was trying to gain weight. You don’t need to be a rocket scientist to see why I was not successful.
My husband recently told me that back in those days he would put his hand on my hip during the night and just cry. I was nothing but bones, and they seemed to be protruding more with every passing day.
We were scared. Very scared. We considered a feeding tube and Picc line, but both felt like such drastic measures.
Out of desperation, we tried one last consult with a new nutritionist about two and a half years ago. She suggested a liquid diet comprised of elemental protein shakes. Elemental protein powder is broken down as far as food can be broken down, so the GI tract does not have to do much to digest it. Rather, the shake is simply absorbed. Hence, the name Absorb Plus.
I wasn’t too excited about the prospect of a liquid diet, but I wasn’t too excited about being a bag of bones either, so I didn’t see I had much choice. My nutritionist asked me to weigh myself so we could get a a baseline before starting the shakes. I told her I couldn’t do that, so she asked me to do it with my eyes closed and have my husband report back to her.
To this day, I don’t know how my husband kept a straight face as we dealt with the scale.
I weighed 81 pounds. Remember, I am 5’6″.
I started the shakes, and hoped for the best, completely unaware of how little I weighed. I knew I was scary skinny, but I never would have guessed just how scary.
I crossed my fingers as I tried the shake, as I had already tried several other protein powders that I was not able to tolerate. At first, my GI symptoms remained the same, but after about two weeks, my symptoms slowly started to decrease, and I did not feel painfully full all the time. I had less stomach pain and nausea and I generally felt better.
Each week, my husband weighed me while I didn’t look, and he reported the results to my nutritionist. I was gaining weight for the first time in years, although, I still didn’t know how much because I didn’t feel safe looking at the scale. One look in the mirror after the shower told me everything I needed to know.
At that time, I told myself if I could just get back to 110 I would feel pretty good about life. Yes, it’s less than before I got sick, but it seemed like a pretty solid number, given where I’d been.
Well, I hit 110 a couple of weeks ago! Just typing that brings tears. It’s taken me two and a half years. I could never describe how hard it’s been. The foods I’ve given up. The times I’ve watched others eat while I sipped. The hassle of brining my shakes everywhere. The daily commitment to stick to the program no matter what.
But I can honestly say it was worth it. Because along with the weight, I gained confidence, and a stronger sense of the person I used to be. I don’t feel so physically fragile. I don’t feel like I need to spend every waking moment strategizing how to gain weight. I don’t feel like I need to freak out if I don’t get all my calories in on a given day. I’ve been able to resume working out and I even put on muscle.
This all amounts to a burden lifted. A burden I’ve been carrying for 9 years. Man, was it heavy. You have no idea.
As happy as I am to weigh 110, I’m not giving up, because I’m not at the end of the story yet. I gained weight by being on a liquid diet. And I see the liquid diet as a band aid, not a cure. If I went back to real food tomorrow, I have no doubt my 24/7 GI issues would return, and my new weight would go back to where it came from. Nothing has really healed. I just found a way to work around my problems.
So, I’m carrying on. I’m continually looking for new doctors, new options, new anything that will help me. I have a few things in the hopper, but nothing nailed down yet. I will report on that when I get it figured out.
In the meantime, I’m going to enjoy 110, which is my new favorite number.