Author: Susan Westbrook

I Got Unlucky Door Number Three.

I’ve been too sick to tell you how sick I’ve been. The above photo is how I spent most of the past week. It was not pleasant.

At my consult with my new doctor at Holtorf Medical Group he recommended a new treatment. He sent me home with the medicine, and told me one of three things would happen when I took it: 1) I would feel good, 2) I wouldn’t notice anything, 3) I would think he tried to kill me. 

You guessed it. I got number three.

When he mentioned the possibility of feeling like he tried to kill me, I didn’t take it too seriously or ask too many questions. I was unfazed by the idea of something making me feel sick because I’ve had so many bad reactions to medications and treatment over the years.  Been there, done that, I always get through it.

Well, this was different. My doctor was not exaggerating when he said I would think he tried to kill me. Within three hours of taking the medication, I was extremely nauseated, my eyes felt heavy as lead, and I felt awful. I literally could not function. The room was spinning, I couldn’t focus, and any motion whatsoever exacerbated the nausea. Looking at my phone or computer was out of the question. Any motion on either device made me feel as though I was about to vomit. 

I spent the day rotating between a comfy chair and the sofa. Even though I felt horrendously bad, I wasn’t too concerned, as I figured it would pass by morning. Oh, how wrong I was. The symptoms lasted for a week. Seven full days. Count ‘em. Seven days of doing nothing but trying to get through the day. Somewhere around Wednesday when I felt no better than when it all started on Saturday, despair began to set in. I was wondering if this was my new permanent condition.

Mercifully, I was wrong about that, and I eventually began to feel better. But it was rough. Holy cow. As I said, I’m used to feeling badly, but this was a whole different level.

The treatment in question is called Low Dose Immunotherapy, which has proven to be helpful in treating chronic lyme disease. It works off the same theory used in treating allergies. The premise is the immune system is overreacting to the allergen, or in the case of lyme disease, the lyme bacteria. 

The way LDI works is an extremely diluted dose of dead lyme bacteria is introduced to the patient, with the hopes of desensitizing the immune system to said bacteria. Said another way – the theory is that my immune system basically goes ballistic when it encounters the lyme bacteria. LDI is supposed to help my immune system and the lyme bacteria get along better. No more shouting.

My husband has done a great deal of research on LDI, which is one of the main reasons we decided to give Holtorf Medical a try, as they have been successfully using LDI for several years. You may read more about LDI here.

So, what does my severe reaction to my initial dose of LDI mean? We are not sure. My follow up with my doctor is next week, and he will explain everything. Based on my husband’s research, we believe my reaction is an indicator my immune system is definitely overreacting to the lyme bacteria. If that’s really the case, that gives us hope LDI may be helpful for me. But, we are not doctors, and we are guessing. 

Stay tuned.

Time to Pass the Baton. Again.

My tangle with chronic lyme disease is neither a marathon nor a sprint. Rather, it’s a relay race. I have been at this for eight years. For many of those years I hoped beyond hope that I could find the ONE person who could solve all my problems and lead me out of the wilderness. 

But that never happened. Somehow, some way, I am closer to the edge of the forrest than the middle, but I was guided there not by one person, but by a succession of them.

Battling chronic lyme disease is like peeling an onion. It’s a layered affair, and sometimes you cry. And let me tell you, my case has been one large onion. Every time I thought I had finally gotten down to the last layer, yet another one would appear. It’s been a very long process of peeling and dealing. And crying sometimes.

Along the way, different medical professionals have helped me with the various layers. And this is where the relay concept comes in. Long ago I gave up on the idea of one person peeling my whole onion. Instead, I would work with somebody until they gave me everything they had to give. Then I would regroup, find another person, and work with them until we went as far as we could.

That might sound like a simple process, however, it was anything but. I usually stayed with somebody longer than I should have because staying with that person was easier than figuring out Plan B. It’s very scary when you come to the realization your doctor is out of ideas and you still aren’t better. It’s doubly scary when your doctor is giving you the same treatments that have been successful for other people, but they aren’t working for you. 

This reality became less scary when I started thinking about the relay process. Each time I reached the end with a care giver, I was better than when I started with them. Said another way, with rare exception, every person that has worked on my case has helped me in some way. Sometimes a lot. Sometimes a little.  I am still not cured, but each time I passed through the hands of one caregiver to another, I got a little closer.

Which brings us to the present.  I feel the best I have in quite some time, but I know I could feel much better. Still more onion layers to peel. And I believe my current doctor has done all he can for me. In fact, I probably should have left him a few years ago, but fear held me back. He’s brilliant, a leading lyme expert, and he knows my case inside and out. His combination of smarts and familiarity have made it very difficult for me to move on, even though I think he has done all he can for me. In fact, he said I’m one of the most difficult cases he’s ever had, and he’s been treating Lyme disease since 1981. He said I’m one of a handful of his patients that just aren’t responding to treatment in the way his experience says I should.

And with that, I am passing the baton to a new clinic. This one is called Holtorf Medical Group, and it’s in LA. Dr. Holtorf, the medical director, has Lyme Disease. Bad for him, good for the patients. Also, Holtorf Medical specializes in thyroid issues, which I have. They take a comprehensive approach to healing patients, and address the root causes of illness vs. just treating the symptoms. All that is right up my alley.

I have no idea how I will feel about the clinic, or if I will seek treatment there beyond my initial consult. It all depends on the feeling I get at my first visit later this week.

I will close by saying I’ve gotten to be an old pro at starting with new doctors. For the first few years, my husband and I would hold our breaths in the hopes the new person would be THE ONE. We were so afraid of what we would do if that didn’t turn out to be the case. Now, I am more relaxed about it. If this clinic is not right, that just means it wasn’t meant to be, and there is actually something better out there.

All along, the right people have crossed my path at the right time, and now I simply take it as a matter of faith that the person I need will show up when they are supposed to. So, I will not be crushed if Holtorf Medical Group turns out to be a bust. It just means I need to hang on to my baton a little longer until the right person appears at my side. 

As they always have. 

Lights Out.

Well, that was a bust.

This year, the change of season and the attendant loss of light have hit me extremely hard. I miss the morning light like you cannot believe. I have gotten in the habit of taking a long walk at dawn. Actually, it’s more than a habit. It’s a ritual. There is something about being in the earth at first light that is incredibly healing to me. The silence and stillness speak to me, soothe me, and restore me. I need that walk like a drug.

With the onset of fall, dawn comes later of course, and due to my schedule at home, I’m not able to get out for my walk exactly when I want to. Plus, with dawn coming later, the world is more awake at first light, so it’s just not the same.

I still go for walks, but later in the day, and honestly, they do not have the same effect. For me, a walk at dawn is medicinal. A walk after dawn is just a walk. 

So really, I’m missing two things. My experience of the earth in relative silence, and the accompanying early morning light. 

My days now start in darkness, and that’s how I’ve started to feel – dark, heavy, tired, depressed. I just know it’s from the loss of light.

I thought I had a big idea for how to remedy my situation: light therapy. After quite a bit of research, I ordered the Aurora LightPad Mini and was pretty sure it was the key to my salvation. I literally could not wait for it to arrive. 

And that was the last positive thing I felt about light therapy. The first time I tried it, it made me agitated and nauseated. You’ve got to me kidding me, right? This happened to be the day before we headed out of town, so I left the light behind, and decided to try it when we returned.

For my second light therapy attempt, I decided to do only 5 minutes. I put the light over two feet away from me, and did not look directly at it. I did not get agitated, but I did get extremely nauseated. For the entire day. The nausea was so bad all I could do was sit in my lounge chair. Moving made it worse. Trying to do anything on my computer made it worse. 

When I felt better I Googled “SAD light and nausea” and it turns out nausea can be a side effect of light therapy. However, the literature says it’s typically mild and tends to pass quickly and diminish as you adjust to treatment. The literature also said to cut down to 5 minutes if you get nauseated. I started with 5 minutes! The nausea was extreme, not mild, it did not pass quickly, and it was worse with the second treatment than with the first. How am I doing?

Needless to say, the Aurora LightPad Mini is packed up and on the way back to Amazon. 

I am disappointed but not surprised I had such an unusual reaction. This is just one of many I have experienced during my long tangle with chronic lyme disease. My body is incredibly sensitive, and atypical reactions are pretty typical for me. I accept that, and do my best to take it in stride.

Since the light was a bust, I am not sure what I will do to help myself live with the darkness. I’ll figure something out, thought.  I always do.

This Is What Going Out To Lunch Looks Like For Me.

My husband and daughter had the locally caught grouper sandwich with fries, and I had the…….Absorb Plus protein shake.

Situations like this used to depress me quite a bit. It can be so tough to sip while others chew. It’s can be especially hard while on vacation (as we are now), when everybody is indulging in treats here and there. 

Thankfully, I have been at this long enough to have gained perspective and acceptance. I can have the fish sandwich and fries and feel crappy, or I can have the shake and not feel crappy. It’s a pretty easy choice when you look at it that way.

Did I get to this point overnight? Absolutely not. I have cried many tears over food I am no longer eating. But my tears are about more than the food. What I miss most is being part of the shared experience of the meal. Comparing notes about the perfect texture of the bread, or the richness of the chocolate cake. Eating off each other’s plates.

When I’m feeling sad and disconnected because of my liquid diet, I focus on gratitude. I am truly grateful for the 20 pounds I have gained from my liquid diet, and I am beyond grateful my stomach no longer hurts all the time. I am also grateful any time I can sit around a table with my husband and daughter. When we are together, I try to be extremely present with the parts of the experience that don’t involve food – shared love and laughter, and our general enjoyment of being together.

Would I rather eat than sip? Absolutely. But I have far more to be grateful for than to be sad about, and that’s where I keep my focus.

I am in the Center of the Bullseye. But it Doesn’t Feel Like Winning.

If the matter at hand is darts or archery, it is very exciting to be at the center of the bullseye. But if you think of those concentric circles in a different context, being at the center brings an entirely different meaning.

Pretend the circles represent the size of the life you are living. A person who is fully alive and healthy and enjoying life to the fullest would be in the outer rings. A person who is the opposite of all that would be in the center.

And that’s where you’ll find me. Chronic illness put me there. As my illness dragged on, my life became correspondingly smaller. Then when the hellacious anxiety hit three years ago, my small world turned into a micro world. Bullseye. But not in a good way.

I’m not a good enough writer to find the words to tell you how difficult it is to push outward from the center, but I will try. Picture a baby in the fetal position. All tucked in and safe and warm. That’s what the center of the bullseye feels like to me. Safe, small, controlled. I can breathe.

Now picture yourself stark naked in the middle of Fifth Avenue in New York City. My guess is you would feel exposed, raw, vulnerable and possibly afraid. Maybe you would find it hard to breathe.

That’s how I feel every time I try to make even a microscopic move from the center of life’s bullseye. Just thinking of it makes it hard for me to catch my breath.

Here’s the rub. Just because it’s hard and feels awful doesn’t mean I don’t do it. I push toward the outer circles as I’m able, because not doing it means not growing, not progressing, and forever condemning myself to a life inside the smallest circle.

Over the past few months, I have made more moves toward the outside than I have in the past year. And it started to feel really good. Until it didn’t. That’s where I learned a hard lesson. I equate it to over eating. You are loving it and feeling great while it’s happening, but about an hour later you are miserable and wondering why you did that to yourself. That’s what happens to me when I reach for the outer rings. I often find it tolerable while it is happening, but then I find out I over did it much too late.

That’s where I find myself now. I have been living a little outside the bullseye for the past two months, and now it has caught up to me. I’m feeling naked. Raw. Exposed. I went too far. So, now I have to retreat back to the center to regroup. Sadly, my forward progress has resulted in a few steps back. 

I’m very frustrated by this latest development. I feel as if there’s some magical algorithm as to how far and how fast I can move out. The only problem is the algorithm seems to be a secret. I just can’t figure it out. Staying safe in the bullseye 100% of the time is not the answer. Pushing out should be the answer, but I haven’t found a way to do it that doesn’t set me back. 

I should probably give you an idea of what pushing out means for me. It means meeting a friend for coffee or a walk, going to a social event, going to a restaurant or church, or doing something that’s not in my normal routine. Those things all seem pretty basic, but for me, doing them feels like being naked on Fifth Avenue. To do any of the above, I have to mentally prepare myself for hours or days, and then I often need to come home to the safety and silence to recover from being out in the world. Sounds like Hell, doesn’t it?

In that light, if you see me out somewhere, while I might look perfectly calm on the outside, the odds are I am dying on the inside and am paying a price for being there. 

Yes. This is what I live with. Every day. This is the corner chronic illness and anxiety have backed me into. I know I will get out one day. Maybe I will never get to the far outer rings of the bullseye, but I have to keep believing I will get farther out than where I stand today. 

The path forward is not exactly clear at this point, but I am blessed with a strong faith, a supportive family, and a wicked smart therapist. Somehow, those three forces will guide and restore me and help me enlarge my world. 

Until then I just have to hang in. 

A Negative Lyme Test Is Good News, But It Doesn’t Mean You Feel Better.

I received this email about two months ago. You might wonder why I didn’t immediately post it and make a big fuss. There are a number of reasons for that.

For starters, it has taken me a while to process it. To believe it’s true. When I got the email I had no reaction whatsoever. I simply stared at the screen in stunned silence. Lyme Disease hijacked my life for eight years, and I spent nearly every waking moment either fighting it or just trying to bear it. Then suddenly with the arrival of an email bong, my tormenter is dead. Just like that.

This may sound odd, but I just couldn’t absorb the fact I had actually beat Lyme. That I didn’t have to fight anymore. An image came to me of a prison guard arriving to let me out of jail, but after he unlocked the door I just sat in my cell. I sat there because I didn’t know how to be free. I only knew how to be a prisoner.

That’s what happened to me with Lyme disease. As the years ticked by and nothing was working, I started to believe I would always have Lyme disease. That a life with Lyme was my only reality. And now here was black and white evidence of a different possibility.

Much later in the day I sat down and thought about all I had done. The tests, the procedures, the doctor visits, all the wretched things I had put down my throat, the prayers, the fears. And then finally, the tears came. Tears for my lost eight years. Tears for how hard I fought. Tears for how tired I was. Tears for how my life will never be the same.

I’m crying as I recall the memory.

There’s another reason I didn’t jump for joy when I received the news of my negative test. As it turns out, the negative test is really just the beginning of the true healing. One more cruel thing about Lyme. My doctor explained it like this: picture hitting your thumb with a hammer. When you lift the hammer up, the assault is over, but your thumb is wrecked and will take some time to heal. Killing the last Lyme spirochete is like lifting the hammer off your thumb. The assault is over, but there is still a lot of healing to be done.

That’s where I am now. In theory, lyme spirochetes no longer inhabit my body. (I say in theory because Lyme is good at hiding from your immune system and from tests. I will need to be re-tested in a few months). But while the Lyme is gone, the damage it has done remains. The issues I still wrestle with, in order of severity, are:

• Slow GI motility that necessitates a mostly liquid diet.
• Extreme anxiety I never had prior to Lyme.
• Low physical and mental stamina. I’d say I’m operating at a quarter of the capacity I had before Lyme.
• Hypothyroidism. Never had it before Lyme. Will probably be on thyroid medication the rest of my life.
• Osteoporosis. The result of malnutrition and weight loss due to my Lyme induced GI issues. (I’m only 48 and there is no family history).
• A general sense of just not feeling like myself.

In spite of that list, I feel better than I have in a long, long time. So let’s end with a more positive list. Here are the things that are improved:

• No more bone crushing, debilitating fatigue. There were many days when I could hardly extract myself from my chair.
• No more brain fog. There was a period of about two years when I could barely focus enough to read.
• No more 24/7 general feeling of malaise.
• No more nausea and more or less constant stomach pain (credit the liquid diet for that).
• If you ignore my GI area, my body feels fantastic. Light and airy. It used to feel extremely heavy and creaky. At times, I felt like I had quicksand in my veins.
• I no longer feel like I am 100 years old. I don’t really know what it feels like to be 100 of course, but I can imagine, based on how I used to feel.

As I take the 30,000 foot view of my journey, I still have a ways to go. But I think I have covered more ground than what remains. At least I hope I have.

I have no idea when or if I will finally feel completely well. That’s beyond my control. So, as I enter this next phase of my journey, I will do what I have done all along. Take each day as it comes. Find gratitude wherever possible. Life life when I can. Rest when I need to. Focus on how far I’ve come instead of how far I have to go. And the most important thing of all – focus on the effort, but let go of the outcome.

I learned long ago that the outcome is up to a force much greater than myself, and the more I work to give up control, the more content I am.

Let’s have an Amen for that.

Sometimes I Get in Bed in the Middle of the Day.

I know. It seems ridiculous. Indulgent. Lazy.

All those things may be true, but I’ll add another word: necessary.

I am definitely feeling better physically and mentally, but only if I pace myself. I generally feel relatively well if the following conditions occur:

• 8 hours sleep
• Exercise
• A manageable to do list
• Time for rest and/or meditation
• Not too many busy days in a row
• Limited socializing
• Minimal stress
• Limited intellectual engagement (I have one to two hours max of concentration per day)
• Sticking to my Paleo diet

Sometimes life falls neatly within my required parameters, but many times it does not. I can handle one or maybe two days when some or all of the above are not met. But when life’s circumstances lead to too many days with sub optimal conditions, I go down. Hard.

When I go down, it’s like my whole body turns off off, both physically and mentally. My brain feels like it’s on fire, making even the simplest of tasks seem impossible. I become physically tired to the point of exhaustion. I literally cannot do a single thing. Not one email. Not a single phone call. Not a single chore. Nothing.

When I get this way, my first option is to meditate. That’s a good way to cool my mind and body down. Sometimes that’s all it takes. But sometimes I need more. In those instances, I head to my lounge chair. The problem there is anything I do to relax engages my brain, which you’ll recall is on fire. Reading? Nope. Hurts my brain. Watch something on my iPad? No again. Too much stimulation. Hurts my brain. Talk to a friend on the phone? No energy for that. Plus, it’s stimulation that hurts my brain. So that leaves me literally staring off into space, which I do sometimes.

If all of the above fail to help me feel better, I go for the nuclear option, which is bed. No matter if it’s the middle of a beautiful day. No matter if I have a long to do list. No matter if I’d rather be doing something else.

Getting in bed is the ultimate comfort, and the surest way to soothe my fiery brain and exhausted body. By the way, I am not talking about anxiety here. I am talking about a Lyme-addled brain that can only handle a limited about of intellectual engagement and/or stimulation. Some days I feel like my brain is on analog while the world is on surround sound. I literally don’t have enough ports to accept and process the routine noise of life. It’s physically exhausting and emotionally overwhelming.

I try extremely hard to keep my life in balance so I never get to this point. But it’s no secret life doesn’t always go according to our plans. I always need to balance activity with stillness, sound with silence, but that’s not always possible.

The only way for me to feel relatively decent all the time would be to live my life in a bubble. But I can’t do that. Rather, I refuse to do that. Sometimes I make conscious choices I know will land me in bed, but I decide whatever joy I’m experiencing now is worth the price I will pay in downtime later. Sometimes, life simply sneaks up on me. Unforeseen circumstances arise and I get too busy, and land in bed. Not much I can do about that, except surrender to the reality of my situation.

This is where perspective comes into play. I used to more or less live in a state of perpetual exhaustion. I never over did it because I didn’t have the energy to do so. At least now I’m feeling well enough to either intentionally or accidentally over do it at times. 

I call that progress, even if it occasionally lands me in bed in the middle of the day.

A Good Read and A Liquid Lunch. Surreal and Normal.

Let’s start with the surreal part. This photo is from yesterday as I sat at the gate waiting for a flight. I was reading a book, as were many of my fellow travelers. However, unlike my fellow travelers, I was reading a book written by my husband. His first novel was just published, and I am incredibly proud of him. He is a fantastic writer, and he is getting great reviews on Amazon, so you don’t have to trust my biased opinion.

We are currently in Virginia (his home town) for a big book launch party.

Now, the normal part. The liquid lunch. And don’t I wish it was that kind of liquid lunch. Not so lucky.  If you’ve been following along, you know I’m on a liquid diet because Lyme shredded my digestive tract. While giving up chewing was difficult, the liquid diet is a blessing in a way. It certainly makes travel easier and less stressful.

I used to lose weight every time we went somewhere, and now I maintain. Blessing number one. Traveling is now easier on my family because we don’t have to scavenge for food I can eat, which gives them more options. Blessing number two.

The only downside is I feel like I live my life out of a Mason jar when we travel. At home I drink my shake in a lovely chilled glass. I make a point of resting and relaxing while I sip. When we travel it tends to be more of a grab and go affair. I always seem to be sipping on the fly, and I am pretty much over the Mason jar by the end of the trip.

But, it’s a small price to pay in order to make my world bigger through travel.

I’ll drink to that. (And to my husband, the author).