That was a Blast.

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File this one under: reclaiming a piece of myself.

I was a runner before I got sick. In fact, I ran a half marathon just two weeks before everything fell apart.

All these years I’ve been sick, I’ve held on to the image of myself running. Of feeling free and alive and healthy.

But running left my life as swiftly, dramatically and unexpectedly as illness entered it. And with the loss of running came the loss of something that felt essential to my self-concept. And my happiness.

As my illness progressed, I slowly morphed from a person to a patient.

I don’t know where or when exactly, but somewhere over the last few years, things finally started to turn around both physically and mentally. And now I am morphing in the opposite direction — from patient to person.

It’s a slow, arduous process, and it’s definitely not in a straight line. But every time I tap into a part of myself that was pre-illness, pre-heartache, pre-suffering, I feel a little more alive. A little more person. A little less patient. A little more like myself.

I just finished running a 5k.

I didn’t train for it. I wasn’t planning to run. The plan was to walk. But as I approached start line, I said “F**k it, I’m running.” I had absolutely no intention of doing so. It was just a wild hair. I figured I could pull it off since I’m in fairly good shape from walking most days.

Can I tell you how glorious it felt? I was slow, I walked a little in the middle, but I ran more than I walked. I freaking ran. And with every step, I slipped just a little more into my old skin. I felt alive, free and happy. Just like I used to. I swear, I was grinning the whole time.

And when I crossed the finish line, I felt like some sort of conquering hero, returning from battle. I was smiling, I was floating, I was free.

I was myself.

It would be hard for me to explain how significant that is, or how tremendous it feels. You could only understand if you’d seen the devil and lived to tell about it.

I have no idea what my finish time is. It’s surely unremarkable, and it’s not even the point.

Because regardless of my time, I won.

As an added bonus, I was joined by my teenage daughter. No small feat, as the race started at 6:50 AM, which amounts to the middle of the night in teenage time. Plus, she was under the impression we were walking until I said “let’s go”. She was a gamer, though, and I’m so proud of her. So proud of us. So grateful for this day. For this moment.

Happy 4th everybody.

 

 

My Anti-Yeast Protocol is Getting Off to a Slow Start. That’s OK. I’ll Get There.

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My recent GI testing revealed I have an overabundance of yeast, and a deficiency of good bacteria. In other words, my gut is unbalanced. I wrote about it in this post a few days ago.

The yeast overgrowth is likely not the cause of my GI problems, rather a result of them. Getting rid of the yeast won’t solve my problems, but it may help me feel incrementally better. And I’m all for anything that helps in any way.

Unfortunately, yeast is a beast and it does not give way easily. It can take months to restore the proper bacterial balance in the gut, and the protocols typically involve supplements and diet modification.

My doctor prescribed a Gastrointestinal Restoration Protocol (GRP). Sexy, right?

The GRP involves five objectives, all carried out currently, as follows:

  1. Remove Therapy. In other words, kill the yeast using anti-microbial agents (i.e. herbal antibiotics).
  2. Reinoculation Therapy. Probiotics to add good bacteria.
  3. Replace Therapy. Often when your gut is imbalanced, you don’t produce enough digestive enzymes, so you replace them with supplements.
  4. Repair Therapy. Supplements to heal the mucosal lining. Again, sexy.
  5. Rebalance Therapy. This is support for the brain, as an imbalanced gut can negatively impact brain functioning.

Any time I’m given a new protocol like this, I need to introduce the supplements very slowly — usually one or two every three days or so. I start with a small dose and slowly work up to the recommended dose. I must do it this way because I am extremely sensitive to medication, and have had too many bad reactions to count.

I wasn’t too concerned about the supplements in steps 2-5, as they are pretty innocuous, but I suspected I would have trouble with the anti-microbials in step one, based on my prior history. My GI doctor prescribed three different anti-microbials, and I introduced them one at a time. I only made it about 5 days on half the lowest recommended dose of the first one before getting sick. No surprise. I’ve been in that movie many times.

My GI doctor recommended setting that one aside for a while, and moving on to the next one, which I’ve done. I’ve taken half the lowest dose for four days without incident, so I’m going to slowly ramp up the dose each day until I am at the highest recommended dose, or I get sick. Whichever happens first. Based on how things go, I will introduce the third anti-microbial somewhere along the way,

 

I will be on this protocol for several months, with check-ins along the way to see if I am making progress towards killing yeast and introducing more beneficial bacteria. My GI doctor said once we get the yeast under control there is other testing he wants to do, but he’s very methodical and wants to take it one step at a time.

I’m on board with that.

This is a perfect illustration of life with chronic illness. While you live in hope of resolving the root cause or your problems, you chip away at whatever is popping up at any given time. Right now, it’s yeast.

This is most definitely a marathon, not a sprint, and I will never, ever give up on trying to regain all I have lost.


Addendum.

I am intentionally vague about mentioning specific supplements and medications I take because I am not a doctor and I don’t want anybody doing anything based on my advice alone. But I know there are many people out there battling yeast, and I also know it can be a challenge, so I am going to share the specifics of my protocol in the event it might help somebody. But please use this for informational purposes only, and if you think something might be right for you, please talk to your doctor. Most of the supplements and anti-microbials in my protocol can only be obtained from a doctor, so I feel fairly confident nobody is going to run with scissors here.

Here we go:

  • Remove Therapy. These are herbal antibiotics that are as powerful as pharmaceutical antibiotics, and sometimes more effective.
    • Morinda Supreme (this is the one that made me sick at a very low dose), Candibactin-BR by Metagenics. So far so good on this one.
    • GI-MicorbX by Designs for Health. Have not started this yet.
  • Reinoculation Therapy.
    • Ultraflora IB by Metagenics. Mega probiotic. 120 billion per day.
  • Replace Therapy. Enzymes to help with digestion.
    • Spectrazyme PAN 9x ES by Metagenics.
    • Betaine and Pepsin by OrthoMolecular.
  • Repair Therapy. Nutrients and phytonutrients for the mucosal lining of the gut.
    • L-Glutamine Powder by NutraBio
    • Zinlori-75 by Metagenics
    • Curcumin BCM-95 by Progressive Laboratories
  • Rebalance Therapy. This is support for the brain, as an imbalanced gut can negatively impact brain functioning.
    • NAC-600 by NutriDyn

Additionally, I am on long term bone nutrients, as I have osteoporosis as a result of my severe weight loss:

  • Bone Builder Active by Metagenics.
  • OmegaGenics EPA-DHA 1000 (Fish Oil) by Metagenics.

 

 

 

 

 

Hummmmm……..

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I came across this sign on my walk this morning. And I took it as a Sign. As in from above.

I am not sure what the intent of the person who wrote “Gods (sic) Plan” was, but I have my own interpretation. To me, this sign says that what feels like a detour to us is really what God had in mind all along.

This is exactly the gentle reminder I needed right this moment, as my life feels like one enormous detour. If you’ve been reading along, you know what’s happening, but if not, let me quickly get you up to speed.

Basically, my life is changing in numerous and dramatic ways. We just sold a house I adored and never wanted to leave, and are temporarily living in an apartment. My only child just graduated from high school and is heading to college. We are about to move across the country, and I will leave behind my entire family, my health care providers, and a network of friends, many of whom I’ve known since high school. I have lived here my entire life. Walking away from my whole history feels impossible. Wrong, even.

Literally, the ground is shifting beneath me.

As I absorb these shifts, I feel somewhat destroyed by them. I am so distraught about moving that I feel physically ill most of the time. If I hadn’t gotten chronic lyme disease, and was still the vibrant, healthy person I was 9 years ago, maybe I would feel differently. But the last 9 years happened, and they have left me physically and emotionally diminished. And very adverse to change.

But our daughter decided to go to college in Virginia, which is where my husband is from. It’s a new adventure for our daughter, and my husband is thrilled to be going home. He deserves it, after moving here. While that leaves me outnumbered, I will follow my family anywhere.

So, I’m moving.

Every fiber in my being is telling me to stay. I’m thinking about a scene in the movie The Bridges of Madison County. Meryl Streep is in a car with her husband who she no longer loves. They are at a stoplight, and her lover pulls up behind them. She quietly grasps the door handle, and for a moment you think she’s going to jump out and run for her life. And her happiness. Or both. But in the end she lets go of the handle.

Let’s be clear. I love my husband, so there is no parallel there. But I would like to pull the door handle on this move. Really and truly. I want to run for my life. And for my happiness.

But if I run away, I’d be running away from my family, and I will never do that. Never.

And if I run away, I’d be running away from God’s plan for me, and that seems like a bad idea.

However, I can’t see the plan now. When I look at my life, all I see are detours I’d rather not take. But I need to remind myself that with God there are no detours. Just a plan that is known only to Him, and will be revealed to me in due time.

That’s where faith comes in.

I have faith. I really do. But I would like to know what’s in the damn plan. And the plan most definitely has not been revealed to me yet. How will moving ultimately be better for me than staying?  How will my life be changed?  What lessons will I learn?  What things will I see and do that I would never have seen or done?

I don’t have any answers yet. Just questions, fear, sadness, and a heavy heart.

My faith tells me to just hang on. To trust. To believe. And importantly, I need to continually remind myself of the notion that this is all part of a plan instead of a detour. 

At this moment, as so much change swirls around me, there isn’t much I know for sure. But this one thing I know: I didn’t run into that detour sign by accident.

 

 

When I am Climbing Everything Else Fades Away.

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When you suffer from anxiety, there is usually a lot of noise in your head. In my case, there are two different soundtracks. There is the one that’s telling me I need to worry about everything under the sun all the time, and then there’s the one telling me to ignore the first one.

One is involuntary (the worrying), the other is voluntary.

Regardless, it’s a lot of traffic between my ears. It’s exhausting.

Over the years, I have tried everything imaginable in order to conquer my anxiety. What I’ve learned is that anxiety is basically un-conquerable. It’s impossible to completely make it go away. But it’s definitely possible to turn the volume down. Way down. And over the past year, I have managed to do just that. However, I’m rarely, if ever, able to turn the volume all the way off.

Enter rock climbing. My daughter is a serious climber, and I’ve been watching her climb in competitions for many years. Over the years she has repeatedly encouraged me to try climbing. Until recently I never felt well enough or strong enough to give it a go.

Oddly, I finally felt strong enough to give climbing a try because I was diagnosed with osteoporosis a year and a half ago. That sounds funny, I know. But here’s the situation: weight bearing exercise is a way to combat osteoporosis, so for the last year plus, I have been near religious about getting 10,000 steps per day, along with lifting light weights, taking the stairs, etc. Somewhere along the way, I started to feel kind of semi-strong.

So I finally got on that wall. And something miraculous happened. The inside of my head was spectacularly silent. No worried soundtrack. No soundtrack telling myself not to worry. It was just me and the wall. The sound of silence has never been so joyous.

When I am on that wall, everything fades away. I’m not a patient. I am not wrestling with my physical and mental health. The only thing I’m wrestling is gravity. And it’s absolutely glorious.

In addition to the abundant silence, the other thing climbing gives me is a sense of accomplishment, which has been sorely lacking in my life since I got sick. I know I have accomplished a lot just by maintaining life and re-gaining my mental health. Let’s be clear. Those are big ones. But those accomplishments are really just about trying to get back to the baseline of where I started before everything went so horribly wrong.

Every time I get to the top of a wall I didn’t think I could climb, I am going above my baseline. I am achieving. I am feeling a sense of satisfaction I have not known in these nearly nine years of being sick.

When I come off the wall, I love just sitting on a bench in the gym. I take my climbing shoes off and let my feet air out. I am chalky. I am sweaty. I am exhausted. And I am alive. So very alive.

And it’s quiet upstairs. Gloriously quiet.

After I leave the gym and get back into my day, the noise inside my head slowly returns. But I don’t fight it. Instead of getting angry about it, I feel gratitude for the temporary respite. Gratitude to have climbed and achieved.

Gratitude for the silence of the wall.

 

I’m Decentralizing. And I Have Yeast.

IMG_0800How’s that for a headline?

As I often say, chronic lyme disease is very glamorous.

So here’s the background. When you have chronic lyme disease, you are basically dealing with problems on a parallel path. On one track is the lyme infection itself. You need to kill that mother if you are ever going to get back to health. So, that’s job number one.

On the other track, you have the cascade of problems caused by the fact you have chronic lyme disease. For example, the lyme treatment along with my compromised digestive tract caused me to lose 37 pounds (and I was only 118 to start with). Because of my weight loss, I developed osteoporosis and my thyroid began to underperform. The trauma caused by my inability to stop losing weight led to extreme anxiety. My slow motility makes me more susceptible to yeast and bacterial overgrowth in my GI tract. Additionally, I suffered from fatigue and brain fog that were caused by the lyme infection, but made worse by the treatment.

What a mess, right?

In the past, I have tried to find a single lyme literate doctor that can address all my problems. It just seemed like it would be easier that way. One stop shopping. Plus, the theory of many lyme doctors is if you kill the infection all the other problems will take care of themselves.

I employed this strategy for about five years. But recently, I realized it’s simply too much to expect one person to be expert on such a wide array of problems. Particularly because my GI problems and anxiety are so severe.

So starting a few months ago, I decided to unbundle my care to see if I can achieve better results. Here’s what I’m doing:

  • For lyme, I am only interested in non-antibiotic options at this point, as I do not tolerate them well due to my GI issues. The most recent therapy I’m pursuing is called Low Dose Immunotherapy, and it is being managed by Holtorf Medical Group in LA.
  • For my hypothyroidism, I started seeing a local endocrinologist. He suspected my hypothyroidism was a result of my low weight. Since I have gained 26 pounds in the last two years (thank you, Absorb Plus), he thought I could try discontinuing my thyroid medication. Thankfully, I was able to do so, as I now weigh enough for my body to properly regulate my thyroid. My lyme doctor didn’t think of that.
  • For my anxiety I have been seeing therapists for the entirety of my lyme treatment, but my lyme doctor was managing my medication, as I was seeing a psychologist who cannot prescribe medication. But in the late summer of 2017 I started seeing a psychiatrist who could prescribe medication. He adjusted my meds, and I am now on only a very small dose, with much better results. Note: I believe talk therapy does MUCH more for me than medication, but I still need a tiny bit of pharmaceutical help. For now.
  • For my GI problems, I recently started with a Functional Medicine GI doctor who was highly recommended by a friend who is a doctor. The first round of testing indicated a high level of yeast in my GI tract, so I am about to start a protocol to combat that. My doctor said this is just a first step, and there will likely be other testing and other issues to uncover, but he wants to take it one step at a time, so we are starting with yeast. BTW, the yeast is not the cause of my motility issues, but likely a byproduct. Getting rid of it will not provide the Big Cure, but should help matters. BTW number two: I’m actually thrilled when GI testing reveals a problem, as it gives me an opportunity to address something that might help me feel a little better.

It’s definitely more work to have a team of doctors versus a single source, but I am hoping it will be more effective.

Time will tell.

Another Recovery Meal.

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I am still trying to get my stomach back on track after getting thrown off by something I ate at a restaurant almost a week ago (see previous post).

When I am in recovery mode, I basically have no appetite and need to keep my food very simple. I can almost always get eggs down no matter what. This meal featured fried eggs (pasture raised, organic) served over a bed of organic mashed cauliflower and a side of grilled organic zucchini.

There is no seasoning whatsoever except salt.

It may seem odd to be eating vegetables as a recovery meal, but when my stomach is off track, I stick to foods I am 100% sure I tolerate well, and zucchini and cauliflower are on that list. Also, pureeing the cauliflower makes it easier to digest, as I’m using the blender to break it down for me.

When I go through spells like this, I usually let my body be my guide. It sort of tells me what will and won’t work. For example, nothing acidic sounds good right now, so no tomatoes, fruit or citrus. Nothing fatty sounds good either, so no avocado. Soft, light, mushy foods are all that sound good, so that’s what I’m eating. The more I listen to my body, the faster I will recover.

My body knows what it’s doing. My job is to stay out of the way. And that’s where the trouble starts. When your digestion is as spotty as mine, it’s hard not to get caught up in the soundtrack of past digestive failings every time a new flare up happens.  It’s a bad soundtrack. And quite unhelpful. But oh, so tempting.

At times like this, I need to consciously turn my mind away from unhelpful thoughts. I need to remind myself of the reality that my digestion is never in a fixed state. It’s constantly in flux — good days, bad days, mediocre days. The job for me is to be OK with whatever is happening and do my best to try not to make it worse by adding fears or negative thinking.

It sounds so simple, but it’s very hard to do.

But I keep on trying. And eventually, this flare, like all others will pass.

Until then…. pass the eggs.

 

This Is A Recovery Meal.

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When I typed the words “recovery meal” I was transported to a time many years ago when a recovery meal involved fired eggs with hash browns and ketchup after having a little too much fun the night prior. Oh, the gooey goodness.

This is a different kind of recovery.

We went out for dinner last Saturday night. Eating out is very fraught for me because my fragile digestive tract is easily knocked off balance. So when we do eat out, it’s at carefully selected restaurants with high quality foods that are willing to cater to special requests.

We went to a favorite restaurant that fits the bill to a T. I’ve successfully eaten there many times in the past, so I was feeling comfortable and confident Saturday night. I did my usual telling of my life story just to order a plate of fish and vegetables, and everything seemed fine.

Then I woke up the next day feeling miserable.

I think when I tell people I have GI problems they wonder what that means exactly. My guess is people’s first assumption is I have some sort of diarrhea issue, which I definitely do not. It’s not constipation either. Isn’t this a glamorous conversation so far?

I have a motility disorder, which means my intestines move incredibly slowly. Imagine a time when you overate. Maybe Thanksgiving after seconds. Now, imagine feeling that way every time you eat, even if it’s a small portion of healthy food. Now, imagine feeling that way all day.

Add in nausea, a general sense of heaviness in the abdominal area, and a feeling that your food just isn’t moving, and now you know what it feels like to have a motility disorder. (BTW, there is not consensus if my motility disorder is a byproduct of my lyme infection, or if I just happen to have two separate things at the same time).

Adhering to a primarily liquid diet with just one solid meal per day at dinner generally keeps my symptoms in check. It’s like my intestines can get the job done once per day, but no more.

But things only run smoothly if I eat foods I tolerate well. And in spite of my careful ordering Saturday night, something went wrong in the kitchen and something made its way into my food that doesn’t work for me. Which caused my GI motility to slow considerably.

So I woke up Sunday morning with the symptoms as described above. It was very unpleasant. I spent most of the day either on the couch or in bed with my heating pad on my stomach, which is the only thing that seems to help. Along with time.

When I am having a flare up like this, I have no appetite or interest in food whatsoever. Fortunately, my protein shakes are incredibly easily to digest, so I can still get them down even if I don’t feel like eating. Then dinner time rolls around. The obvious thing might be to have another shake, but three shakes per day is one too many. Trust me, I’ve tried.

So I try to eat food even though nothing in the world sounds good. Eggs are my go to when I just don’t feel well, so for the meal in the photo, I had an “omelette”.  However, there was nothing inside except a very small amount of raw goat cheese. Nothing else sounded good. I ate my “omelette” with a side of steamed broccoli and cauliflower rice. No seasonings. Nothing. Just plain, plain, plain.

I got it all down OK, but it wasn’t that enjoyable.

It’s now Wednesday, and my GI tract is still not back to normal. Once it gets knocked off balance, it takes days to get back on track.

It is very anxiety provoking to have a flare up like this because the longer it goes on, the darker my thoughts get. Am I going back to square one? Why is it taking so long to feel better? Is something new wrong? Will I start losing weight again? Nothing sounds good. How will I eat dinner?

Of course, this begins a vicious cycle. The anxiety does nothing to help my GI problems, which I’m well aware of, so then I get anxious because I’m anxious, which makes everything worse.

That’s where I’m living right now. Trying to ride out this flare. Trying not to make it worse by adding anxiety to the equation.

I’ve been in this movie many times, and my digestion always rights itself. But it happens on its own time, not mine.

And that’s my message to myself this moment. Hang in there, sweetie. This will pass. It always does. Just hang on.

 

 

My Lyme Story in Photos.

It’s difficult to find the words to adequately describe the ways chronic lyme disease has ravaged my brain and body. As difficult as it is, I think it’s important to share my story. First, I hope to provide encouragement, help and support to anybody who may be in a similar situation. Second, I want to do my part to humanize this very real epidemic that is not treated as such by much of the western medical community.

Chronic lyme disease is under funded, not well understood, and there is no standardized care. Insurance companies don’t cover it, and non-lyme literate doctors don’t know what to do with it. As such, sufferers are often left to navigate their illness on their own.

My antidote to all that is to keep telling my story. As loudly and clearly as humanly possible. Maybe I will only help one person. And that will be enough. But, my greatest hope is to help many, many people. So, I will keep telling my story.

Today I will do so in photos. Take a little journey with me. From extreme good health, to extreme illness, and back to something that sort of resembles good health.

Emma Took ThisChippewa Falls, Wisconsin. Summer, 2005.

This is me at our cabin. I never got the name of the tick or saw the bite, but my best guess is this is the scene of the crime, as our cabin was in tick country, and I did some gardening in tall grass the summer I got sick.

As I look at the photo, I am grateful for how niave I was in that moment. Grateful for how much I didn’t know.

hotel-costesParis. August, 2005.

This is the second crime scene, AKA the Hotel Costes in yes, Paris, which is where we happened to be when my acute Lyme infection roared in. It was seriously the most romantic hotel I have ever been in. Sadly, I hardly remember it because I was basically delirious. Fevers, night sweats, searing headaches, severe body aches — everything hurt, including my hair, and I’m not kidding. It was an excruciatingly difficult situation.

I was so miserable that we ended up coming home early.

Not exactly the Parisian experience we were hoping for.

IMG_0741Saint Paul, Minnesota. August, 2005

Here is my positive lyme test. Two interesting things about that. First, it took three trips to the doctor before I was properly diagnosed, even though I had every obvious sign of Lyme. Second, this test, the Western Blot is the only Lyme test recognized by the CDC and thus, insurance companies. The issue there is this test is notoriously insensitive, which means many, many people end up with false negatives, and therefore, don’t get timely treatment. There are far more sensitive tests out there, but none are recognized by the CDC, which means they are not recognized by the western medical community or insurance companies. Are you starting to see the problem?

Big UnitSt. Paul, Minnesota. August 2005.

Ok, try not to be distracted by the giant zucchini.

This is about a week after my lyme diagnosis when I developed lyme-related Bell’s Palsy. If you look closely, you can see my right eye is drooping, and my mouth is slightly askew on the right side. My right eye would not close all the way at night, and I didn’t have complete control of my mouth, so I had trouble keeping liquid in my mouth at times.

Fortunately, my case of Bell’s Palsy was relatively minor and passed in a few weeks. Unfortunately, as I was to learn much, much later, the fact I contracted Bell’s Palsy meant the lyme affected my 7th cranial nerve, which is hard evidence my lyme infection broke my blood-brain barrier. In other words, the lyme infection infiltraated my brain. Not good. Obviously.

Irv Summer Vaca 2005 052Irvington, Virginia. August, 2005.

This is about a month after my acute lyme infection. I had finished my course of antibiotics, and was told the infection was gone, and that lyme would never be an issue for me again. Here I am feeling well again and enjoying my life. I thought lyme was firmly in the rear view mirror.

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IMG_1407Chippewa Falls, Wisconsin. August, 2009.

Flash forward to August 2009 when I ran a half marathon. Look how fit, healthy and strong I am. I didn’t know it at the time, but this was the beginning of the end of my vitality.

These photos haunt me. If I’d known what was to come, I would have lingered just a little longer in that lovely space where the healthy people live.

Within two weeks, my digestion had shut down, and my 9-year journey to the pit of hell was just beginning.

Little did I know.

Maybe it’s good I didn’t.

IMG_2099New York, New York. November, 2009.

By this time, I was in deep trouble. My GI tract was basically not functioning. I had been to numerous doctors, including a $30,000 work up at the Mayo Clinic in Rochester, Minnesota, and nobody had answers.

While they had no answers, the Mayo Clinic did discover that my small intestine was barely functional. They performed a gastric emptying study where you are fed a radioactive breakfast, then are scanned periodically for 48 hours to see how well the food moves through.

After 6 hours, 6% of the food cleared my small intestine.

Normal, is 48-96%. I was in trouble. Big.

The Mayo Clinic diagnosed Idiopathic Intestinal Pseudo Obstruction, which is a fancy way of saying your small intestine isn’t working, and we have no idea why.

They offered me hope and a feeding tube. I said “yes” to the hope, “no thanks” to the feeding tube.

While I declined the feeding tube, I grudgingly agreed to a liquid diet, and I remained determined that my illness would not interfere with our life. As such, we pressed forward with a previously planned trip to New York, and I packed a suitcase full of Ensure.

Note: I now know Ensure is about one of the worst things you can put in your body, as it’s basically sugar and chemicals. But I didn’t know that then, and the Mayo Clinic recommended it, so I did it.

Another note: I felt like shit in that photo (and for most of the trip), but I was not about to miss the chance to ice skate with my daughter in Central Park.

It would be the first of many things I did through gritted teeth so as not to miss out on my life.

 

IMG_1226IMG_1021DSC_0012_2Virginia and Minnesota, 2009 – 2013.

We spent the four years of 2009 – 2013 on parallel paths. On one path, we did our best to just live our lives as normally as possible. We traveled, we laughed, we loved. I didn’t feel well most of the time, but we just kept going.

On the other path, we went from doctor to doctor to doctor in search of answers. In-state, out-of-state, it didn’t matter. We tried everything, read everything, went everywhere. Diet therapy, acupuncture, chiropractic, homeopathy, yoga, meditation, and things I don’t even remember.

I achieved modest improvement, but nothing like a cure. And no explanation for why my digestion turned off. Which of course, means no way to turn it back on.

 

IMG_8241Anaheim, California, Summer 2013.

Even though I was sick, we continued to make long range plans, as we figured I’d be better by the time whatever we planned rolled around. I never seemed to get well, but we kept making plans anyway.

In this case, we had planned a summer visit to Disney in California. By the time the trip came along, my GI issues were still very severe, and I had new symptoms: brain fog and severe fatigue. At this point, I was so weak, I had no choice but to use a mobility scooter to make my way around Disney. It was so humbling, but my choice was to take the scooter and go to Disney or not take the scooter and not go.

I took the scooter.

IMG_0740Vadnais Heights, Minnesota. June 2013.

As it turns out, we had a major breakthrough just prior to the Disney trip. A friend who is a doctor suspected my issues were due to chronic lyme disease, and referred me to a well respected lyme literate MD in our area.

I was tested for chronic lyme using the Advanced Laboratories test. In this test, they culture your blood, which allows them to actually see if lyme spirochetes are present. I was told they take a first look at the culture in ten days, but that it can be six to eight weeks before getting a definitive result.

My test came back positive in the first ten days.

Bingo.

I was actually thrilled when the nurse called with the results. Finally. A real diagnosis. We found the root cause of my problems. I thought I would be back to my old self in no time.

Oh, how wrong I was.

IMG_0132White Bear Lake, Minnesota. Summer 2013 to fall 2014.

I started long term antibiotic treatment for chronic lyme in the summer of 2013. I did seven months of pharmaceutical antibiotics and another seven months of herbal antibiotics. I looked like this for much of that time. In fact, my husband says when he thinks of my battle with lyme disease, the primary image is sees is me with my head in my hands.

To say I did not tolerate the antibiotic treatment well is an understatement.

When lyme spirochetes die, they release toxins. When toxins are released at a faster rate than your body can process them, it’s called a Jarisch-Herxheimer reaction, named after the physicians who identified the phenomenon.

While on antibiotic treatment, I had too many herxheimer reactions to count, and I can tell you they made me feel absolutely miserable. I typically experienced severe fatigue, nausea, body aches, and decreased appetite. It’s basically the flu without the vomiting. Sometimes I got so fatigued and nauseated I literally could not function.

One day, I finally just said “enough”. I couldn’t take it anymore, and nobody blamed me. They saw how much I had suffered. So I stopped all lyme treatment for the remainder of 2014.

A note: Long term antibiotic treatment is very controversial in the medical community. Some doctors swear it’s the only path to recovery. Others say the risks outweigh the benefits.

I’m not a doctor, so can’t give a definitive answer. But in hindsight, I would say antibiotic treatment was definitely a mistake for me. Nobody with severe GI problems such as mine should be given long term antibiotics.

I did it somewhat against my better judgement. At the time I was diagnosed, I had already been sick for four years. My doctor was extremely well versed in treating lyme disease, and he was also very persuasive. He made me feel as though antibiotic therapy was my only choice. He also seemed pretty convinced it would cure me. He was wrong on all counts, and is no longer my doctor. That’s a whole different story.

 

AnxietySaint Paul, Minnesota. Fall 2014.

I have been a low grade worrier my entire life, but in the fall of 2014 worry exploded into debilitating anxiety. I would have to write a novel to explain the ways anxiety has strained my life, my relationships and my well being. I became prisoner in my own home and in my roiling mind.

I have been fighting my anxiety as hard as I’ve been fighting lyme disease. Nearly four years since the initial onset, I am in a much improved place with my anxiety. I still get anxious every day, but anxiety no longer holds me prisoner, and I am slowly regaining my mental health every single day.

Extreme anxiety is a very common side effect of lyme disease. In fact, if you Google “lyme and anxiety” you will see pages and pages of results.

 

Saint Paul, Minnesota. January 2015.

By early 2015 I felt completely lost. I had been actively fighting lyme disease for a year and a half, and had seemingly nothing to show for it. In fact, I felt and looked dramatically worse than when I started. My GI symptoms were worse, my brain fog was worse, my fatigue was worse. My weight continued to fall. My optimism was fading.

Since the lyme treatment seemed to be doing more harm than good, I didn’t have the heart to take on any more. Instead, I spent most of 2015 detoxing. The goal was to help my intestines recover from the damage caused by the antibiotics, and strengthen my mind and body so I could withstand further treatment down the road.

The photo above is from the far infrared sauna. I almost always felt better after a good sweat.

I also did forty 2 hour sessions in a hyperbaric chamber (pictured below). The logic there is lyme cannot survive in a highly oxygenated environment. So, you wear an oxygen mask in the chamber and then the pressure from the chamber forces the oxygen deep into your cells where the lyme spirochetes are living.

After the hyperbaric chamber, I had a dramatic decrease in my brain fog and fatigue. Unfortunately, my GI symptoms did not improve.

 

Ongoing.

This is the view from my resting chair. I have spent countless hours here since 2009. Having lyme is exhausting. Battling lyme is exhausting. Rest is essential, and often the only option. Some days I just can’t get out of the chair.

 

 

IMG_9050Tulum, Mexico. Spring 2015.

This is the first in a series of photos I will call “going down”.

 

As I mentioned, my fragile gut was basically destroyed by the lyme treatment, which meant my weight plummeted in spite of desperate, non-stop attempts to heal my gut and gain weight. It was a scary, anxious time.

Below are more photos of me shrinking. As you look at them, keep in mind the image of me running that half marathon.

IMG_9105Note my protruding breastbones and thin arms.

IMG_1271More bones.

IMG_6239I call these “marionette arms”. Terrifying.

IMG_9095For reference, my daughter is fourteen in this photo. Look at my arm compared to hers. My husband pointed out my wrists. Look how skinny and veiny they are.

 

4M0A8687 (1)Human skeleton.

4M0A8081More skeleton.

Look at me.

See me at my worst.

Remember what I looked like in the marathon photos.

This is what lyme disease does to people.

 

Saint Paul, Minnesota. Summer 2015.

Enter Vertigo. Out of nowhere, I developed a pretty serious case of Vertigo that knocked me flat for most of the summer of 2015. I have no idea if it was lyme related, but it happened while I had lyme disease. Miserable.

 

Summer, 2016.

2015 was a year of detoxing. And honestly, I don’t remember exactly what I did in 2016. I know I tried a few different doctors, with little to no improvement. By this point, I felt like I had tried just about everything, and didn’t know where to turn next.

Then I got my answer. My husband and I were on vacation, and when I went to put on my bikini bottom, it literally would not stay up because I had lost so much weight. I had long ago given up weighing myself because it added too much pressure. I knew I was continually losing weight, but didn’t know how bad it was until I had the wake up call with my bikini.

Incidentally, my anxiety was raging harder than ever at this point. So, right then and there on vacation, my husband and I decided two things:

  1. Forget about fighting lyme disease for now.
  2. Weight loss and anxiety were now public enemies one and two, and that’s where we were going to focus.

 

For the weight gain, I started with a new nutritionist, and after trying a few diet modifications that did not help, she suggested I go back to a liquid diet. Not Ensure this time, but a much healthier, easier to digest option. It’s called Absorb Plus, and is considered an elemental protein powder because it is broken down as far as food can be broken down. In other words, it’s pre-digested.

I was loath to go back to a liquid diet, but I weighed 81 pounds (my nutritionist made me weigh myself to get a baseline), so what choice did I have? I tried my first shake and…….I tolerated it.

And I continued having the shakes, and I continued to tolerate them.

My routine was full shake for breakfast and lunch. Half shake for an afternoon snack, real food for dinner (wanted to keep my intestines acquainted with actual food), and half shake for dessert.

Under this routine, my GI symptoms very slowly started to dissipate, and I ever so slowly started to gain weight for the first time since 2009.

 

Ongoing.

This is what it looks like when we travel. I pack my Absorb Plus “meals” ahead, and just add water when it’s time to eat, which really means “drink” for me.

 

Saint Paul, Minnesota. 2016

As I said, I’m a little foggy on exactly what I did in 2016, but somewhere in there I started something called EWOT, which stands for Exercise With Oxygen Therapy. It operates under the same theory as the hyperbaric chamber — lyme doesn’t like oxygen, raising your heart rate while breathing oxygen pumps the oxygen deep into your cells.

I have no idea if it helped anything, but it certainly didn’t hurt.

This is what it’s like to battle lyme. You just keep trying things and hope they eventually add up to something.

 

Saint Paul, Minnesota. February 2017.

At my annual check up, my doctor recommended a bone density scan even though I was only 48 at the time. She suspected osteoporosis because of my weight loss. Unfortunately, she was right. It’s just one of the many cascade effects of chronic lyme disease.

I battle the osteoporosis by getting 10,000 steps most days, lifting light weights regularly, taking the stairs whenever possible, and taking calcium supplements.

I am very determined not to break a hip.

 

Saint Paul, Minnesota. November 2017.

I spent the second half of 2016 and most of 2017 focusing solely on gaining weight and reducing anxiety, and made progress on both fronts.

By November 2017 I was ready to go back into the lyme jungle by trying a newer therapy called Low Dose Immunotherapy, or LDI. I was treated by the Holtorf Medical Group in Los Angeles.

LDI is similar to treatment for allergies. Basically, you are exposed to thing thing that torments you in order to help your immune system deal with it more effectively. For LDI for lyme, you swallow a solution that contains a very small amount of dead lyme antigens.

I was given the smallest dose possible, and it knocked me flat for an entire week. The worst herxheimer reaction I ever had. I was literally non-functional. I was so nauseated,  could barely open my eyes.

My doctor at Holtorf Medical said the strength of my reaction suggested I was still carrying a large load of lyme bacteria.

I have taken a few more doses of LDI since the original, and I’m happy to report I had a much more mild response. Time will tell if that actually means anything.

 

IMG_7607

Now that I’ve brought you to my lowest low, let me bring you some better news.

 

I have been on Absorb Plus for roughly two years, and as of today, June 3, 2018, I have gained a whopping 26 pounds. It has taken a long time and a tremendous amount of diligence and discipline, but it’s a tortoise and hare deal, and I’m OK with that.

As I gain weight, I also gain energy and I feel better. When your weight drops as low as mine did, your body just doesn’t have enough fuel to properly function. With the weight gain, things just seem to be working a little better.

The above photo is from Summer 2017. You can see I have a little more meat on my arm.

The below photos tell the tale of my weight gain.

IMG_7628My daughter is a rock climber, and she is wicked strong, so you can’t compare my arms to hers. But they are looking better, right?

IMG_7213I love this photo because I have a real live thigh. (And I love they guy I’m with).

IMG_1655With my weight gain came increased energy. Here I am at the top of a 1,000 foot elevation, 5 mile round trip hike in Telluride, Colorado. I don’t think I look any worse for the wear.

IMG_0306This is present day (May, 2018). My arms are back.

 

climbingMinneapolis, Minnesota. May 2018

For so many years when I was sick, I held on to the image of me stretching after running the half marathon. Lyme disease ripped me so far away from that person — both physically and mentally. I felt so diminished in mind body and spirit, and the evidence was right there in front of me in every single bone I could count.

I kept thinking if I could just get to a place where I could run again, I would begin to feel whole again. It got to the point where I would get a flash of anger every time I saw a runner. That should be me.

Somewhere over these last nine years, I let go of the image of who I had been, and began to hang on to the image of who I was becoming.

I am not the person I was before I got sick. I’m not as young. I’m not as strong. I’m not as fit. I’m not as confident.

But I’m more mindful. More grateful. More wise. More religious. More compassionate.

I have more problem solving and coping skills.

I know what true happiness is because I have seen true despair.

I’m more equipped to help my husband and daughter with life’s challenges because of what I have learned from suffering.

And…….I’m getting physically strong again.

I don’t care about running anymore. I let that go a long time ago. I probably have the physical stamina now, but honestly, my intestines just don’t want to be jostled.

But I can walk, and I do so nearly every day. And I can do squats, and lift weights, and carry heavy bags of groceries, and take the stairs instead of the elevator.

And I can climb walls.

My sweet daughter encouraged me to try her passion of rock climbing. I am a novice. In fact, I barely know what I’m doing. But I’m doing it. Somehow, I am getting to the top of that wall. And when I am on the wall, everything else fades away — my anxiety, my stress, my exhaustion for all I go through every day. It’s just me and the wall and the feeling of true accomplishment.

If you look closely at the photo, you can see a little muscle in my back and arm. It’s nothing like what I used to have. But it’s a start.

And that’s enough for me right now.

I’d like to say this story has a happy ending and I am 100% restored to health. Unfortunately, I can’t do that.

Even though I continue to gain weight and have fewer GI issues, my GI problems are not cured. Rather, the Absorb Plus is a giant band aid. At this point, I don’t know what my GI future holds, or if I will ever be cured. But my plan for now is to continue what I’m doing until I get to at least 115 pounds, and evaluate my options at that point.

It’s hard to know if you ever are rid of lyme. I have certainly thrown the kitchen sink at it. Does the fact my GI issues are not resolved mean I still have lyme, or is it simply that the damage to my digestive tract is permanent? Nobody can really tell me. Some doctors say it’s possible to fully recover from chronic lyme. Others say you never fully get rid of it, and the best you can hope for is to beat it into remission.

My four biggest issues with lyme are my GI problems, brain fog, extreme anxiety, and fatigue. My brain fog and fatigue are vastly improved. Not back to 100%, but much, much better.

My anxiety is still present but improving.

As I said, my GI issues are not resolved, and I will always keep trying.

Finally, I’d like to say this has been an interesting exercise. I experienced many emotions in the retelling of my story, but one thing stands out more than anything. This road has been incredibly hellacious, but somehow, I just kept going — both with my fight against lyme, but also with my life.

If I decided to put life on hold until my lyme was fully dealt with, you can see how much I would have missed. I often did not feel well when we traveled, and I almost always paid a price in terms of exhaustion when we returned, but it was worth it. It was always worth it.

Lyme disease has taken much from me. It has knocked me down over and over. But I got up. Every time. And I showed up. For my husband, for my daughter, and for myself. I have experienced so much of the last nine years through gritted teeth, but when I look back at the photos, I don’t remember the gritted teeth. I remember the fun and the love and the shared experiences.

Lyme disease can never take any of that from me.

 

Dinner.

IMG_0226

As I mentioned earlier, I’m going to try and do a better job of sharing Paleo food ideas. Lyme Disease creates inflammation, and the Paleo diet is anti-inflammatory, thus, I am Paleo. The interesting thing is I was vegan before my doctor told me I needed to go Paleo. Yeah. That was a bit of a transition.

The good news for me is that because I am on  a liquid diet during the day and only eat solid food at dinner (due to severe GI issues from Lyme), I don’t need a lot of protein at dinner because I get plenty in my shakes throughout the day. So, for me, the protein item is always the smallest thing on my plate. Usually around two ounces. I’m still not that big on eating animals, but I’m also not big on lyme-related inflammation, so I’m taking the lesser of the two evils.

This is dinner from a few nights ago, and it was very simple. Turkey meatballs served over a bed of mashed cauliflower, topped with steamed asparagus and chopped fresh basil.

Here’s how I did it:

  1. I think the asparagus is pretty self explanatory. Wash, trim, steam.
  2. Meatballs:
    • Combine 1 pound ground turkey thigh with salt, pepper, and fresh and dried herbs of your choice. I did fresh parsley and dried  basil and oregano.
    • When everything is mixed, scoop onto a wire rack placed atop a parchment lined baking sheet. The rack will let the fat drain off. The parchment will prevent you from having to clean the baking sheet.
    • I use an ice cream scoop to achieve uniform size.
    • Bake at 350 degrees for 18-22 minutes, depending on your oven. You want them to be just cooked through in the center, so they retain moisture.
  3. Cauliflower mash.
    • Coarsely chop a medium head of cauliflower and steam until just tender.
    • Add to a high speed blender (I use a Vitamix) along with 1/8 to 1/4 cup (depending on how big your head of cauliflower is) liquid of choice — you could use bone broth, non-dairy milk, etc. Add in salt to taste.
    • Blend on high until creamy. You might need to use the tamper.
    • Note: you do not need much liquid, as the cauliflower contains a fair amount of water. Start with less and work your way up if necessary.
    • If desired, you can add fresh or dried herbs at the end. Be sure to mix on low.
    • Convenience note: To keep things simple, I will usually do the cauliflower mash early in the dinner prep process and then keep it warm in the toaster oven while I prepare everything else. Then I’m not dealing with the vitamix at the last minute.

As I post more food, you will start to notice a few themes in the way I cook:

  • I usually don’t use recipes, that’s why everything sounds kind of loose when I describe each dish. I’m basically trying to share the basic method, and you can customize to your individual taste.
  • Most of what I cook is fairly bland and easy to digest due to my GI issues. Anything I share can be spiced up with garlic, onions, red pepper flakes, etc.
  • I generally use the highest quality food I can find. For poultry and eggs,  I go for free range, and organic. Fish is wild caught. I rarely cook with beef, but when I do it’s 100% grass fed and organic. Vegetables are organic and local when possible.
  • I’m often tired by the end of the day, so I try to create meals that involve as little prep and clean up as humanly possible.
  • I almost always garnish my dishes with fresh herbs. My nutritionist encourages that, as herbs can be so healing. For example, fresh oregano is anti-microbial. Cilantro is detoxifying. The list goes on.

OK, so that’s dinner.

Enjoy.

This Story Will Make You Mad.

When you have chronic lyme disease, it can be very hard to know who or what to trust. This story is a perfect example.

When I was diagnosed with chronic lyme disease in 2013, I was also diagnosed with hypothyroidism, as I had low T3, which is a hormone produced by the thyroid gland. I had an unusual situation, as I had low T3, but normal TSH (Thyroid Stimulating Hormone). Normally, if you have low T3, you also have high TSH. But I didn’t.

Apparently, this was cause for concern, as one situation that produces low T3 and normal TSH is a brain tumor. So, my lyme doctor ordered an MRI of my brain. You can bet I was super relaxed about that. Thankfully, I did not have a brain tumor. Thus, my doctor said the lyme infection in my brain (it breaks through the blood brain barrier in the first 48 hours) was interrupting the communication between my hypothalamus and my pituitary gland. The two need to be on good speaking terms in order for the thyroid to function properly.

My lyme doctor recommended thyroid hormones. This turned into a major discussion, because a functional medicine doctor I was seeing at the time implored me not to take the thyroid hormone. He basically said it would goof everything up and that there were more natural ways of dealing with my thyroid issues.

At the time I was dealing with severe fatigue. As in, we were on a previously planned trip to Disney and I had to use a mobility scooter because there was no way I could have walked the park. That kind of fatigue. Can you imagine?

I didn’t know who to believe about the thyroid medication, but I knew something needed to change in the way I felt, so against my better judgement, I decided to take the thyroid hormone.

I have seen two different lyme doctors since the one who originally prescribed the thyroid hormone, and they both recommended I stay on it. Over the years, my T3 levels were closely monitored, with blood draws very six to eight weeks, followed by medication adjustments, if necessary.

Fast forward to fall of 2017. Suddenly, I’m having all sorts of issues with regulating my body temperature. I have a history of always being cold, but suddenly I was always hot. Like, really hot. I spent the harsh Minnesota winter in a sweat. Sometimes I’d walk around the house half naked. I’d be in a public space, and I’d note I was wearing a t-shirt while everybody else was bundled up in sweaters and jackets. 

I know what you are thinking. Menopause. While I am of a certain age, I’m still menstruating, so that wasn’t the issue. 

When you are being treated for chronic lyme disease, you tend to move away from traditional western medicine practitioners, because they look at you like you are crazy when you say you have lyme disease. It gets old.

But the body temperature thing was really bugging me, and I had a hunch it had something to do with my thyroid. So, I made an appointment with an endocrinologist. 

After starting the meeting with the standard “I know you don’t recognize this, but I have chronic lyme disease” conversation, I told the doctor about my past thyroid issues, along with my current symptoms and medications.

He asked to see my blood work from before I started the thyroid hormones, which I had on hand. Sadly, I’m a pro at this, and anticipated his request.  He then asked the million dollar question. He said “How much did you weigh when this blood work was done?” I told him I didn’t know for sure, as it was many years ago, but I guessed it was south of a hundred pounds.

To which he said “I don’t think you were hypothyroid. I think you were starving. When your weight gets too low, things don’t work right.”

When he said that, tears literally popped out of my eyes and rolled down my face. I didn’t even care. I was completely unselfconscious about it. Why was I crying? First, I never wanted to take those damn thyroid hormones in the first place, and it turned out I never needed to. So, that pissed me off. Second, it just reinforced how difficult it is to navigate the lyme jungle. I had not one, but three lyme doctors tell me I had lyme related hypothyroidism, and that it was critical for me to take the medication. In that moment, I was just so exhausted on navigating conflicting medical opinions.

The lyme doctors didn’t make any money off the medication, so I can only believe they had the best of intentions, but still. It’s just infuriating. There are many risks associated with taking thyroid hormones, and it turns out I unnecessarily exposed myself to those risks for four years. Not to mention, taking thyroid hormones is a huge pain in the butt. You have to take them first thing in the morning, one hour before any food, drink or other medication. Psychologically, it never made me feel good to roll out of bed and pop a pill first thing. It just sends the wrong message. I’m sick. I need medication to function. I hated starting my day that way, and I’m getting mad all over again as I write this.

But back to my appointment with the endocrinologist. Once he handed me a tissue and I stopped crying, he suggested I discontinue the thyroid hormones, and then come in for a blood draw in three weeks, once the medication fully cleared my system.

You can already see where this is going. My thyroid labs were completely normal. I was taking medication for no reason. In fairness, I have gained 26 pounds in the last two years, so that likely has something to do with my T3 levels coming back into the normal range.

Two things have happened since I discontinued the thyroid hormone:

  1. Over the course of a few months, my body temperature issues resolved, and I am no longer overheating.
  2. I started to gain weight at an increased clip.

When I noticed my increased weight gain seemed to coincide with discontinuing the hormone medication, I emailed the endocrinologist to ask if there was a correlation. He said there absolutely was. So, all these years, when I have been struggling to gain weight, the thyroid hormones were playing a role in holding me back. My GI system is still totally whacked, so I can’t put all the blame on the thyroid medication, but let’s just say it wasn’t helping anything.

I’m still pretty mad about all this. Yes, it’s true, I did have low T3 at one point. But I’ve learned it’s also true that not all thyroid deficiencies need to be treated, particularly if there is an extenuating circumstance, such as dramatic weight loss.

Here is the moral of the story. You know that expression “to a man with a hammer, everything looks like a nail.” I think that’s also true of many lyme doctors – everything looks like lyme to them. And that’s my advice today – if you have chronic lyme, or chronic anything, be on the lookout. It’s too easy for doctors to just blame everything on your chronic condition.

For whatever reason, I always had a nagging feeling my thyroid issue was not lyme related, but I never acted on my hunch because I had three people who had gone to medical school telling me I needed to be on medication, and I figured they were in a better position to know that than I was. Well, that turned out to be misplaced trust.

I am sad to say that after nearly five years navigating the mess of chronic lyme disease, I truly don’t know who to believe or who to trust. I think the fact of the matter is nobody has chronic lyme completely figured out. Not western medicine doctors, not functional medicine doctors, not lyme literate MDs. Nobody. Everybody has their own theories, and I believe they believe them. And I think most practitioners who treat lyme patients have nothing but good intentions. But I can’t help feeling like a human guinea pig. 

We are still on the frontier of this epidemic, and until it gets more attention from the CDC and Western Medicine, there’s not going to be a standard treatment protocol, which means people are going to continue to struggle to get proper care, and will occasionally get sent down errant rat holes, as I did. 

I realize this is more negative than I tend to be, but lyme disease is a bitch, and people who suffer from it have to work way too hard to get well, as they are simultaneously fighting the disease and the system.

I know things could be much worse, and I need to hang on to that perspective. I have learned so much from being sick, and I would never give those lessons back.  But lyme disease has taken much from me, and I have sadness and anger about that. Buy I will never stop trying to regain what I’ve lost. Never. Ever.