A New Beginning. Again.

I’ve been very lame about dealing with my lyme disease for the past year and a half or so. Our life got busy, and there always seemed to be something more pressing than lyme disease. Probably not the best idea. Really, what’s more pressing than trying to restore your health?

Time to re-prioritize and put some focus back on my healing. The problem was where to begin. For starters, we relocated across the country last summer, so I had to find a new doctor here. But that’s just a logistical issue. The root of the problem is I don’t know who to trust anymore. I’ve seen my share of doctors from across the spectrum — mainstream western medicine doctors to functional medicine doctors to homeopaths to chiropractors to acupuncturists to “witch doctors.” And they have each given me reasons to both respect and revile them.

And let’s be real here. None of them has cured me. Yet. And I’ve been at this for nearly 10 years.

While I didn’t know where to turn, I decided that doing something, even if misguided, is better than doing nothing. I took stock of the variety of doctors I’ve seen in the past, and to my surprise I decided to see if Western Medicine had anything to say for itself. It’s been a while since I’ve talked to Western Medicine doctors about my lyme and GI issues, and I wanted to see if anything had changed.

In a word. No. First, I met with a highly recommended western medicine doctor. Nice guy, but he’s not up to speed on the latest treatments for lyme, and he had absolutely no idea about what to do about my gut. He took a bunch of blood and didn’t have any recommendations. Strike one.

Next, I had a consult with a GI doctor. Again, nice guy. But he literally told me there is nothing that can be done about my GI problem, which was diagnosed by the Mayo Clinic as Idiopathic Intestinal Psuedo Obstruction.

Let’s pause on that for a moment. First, Idiopathic = No known cause. Pseudo = fake. So, basically, a $30,000 work up at the Mayo Clinic determined I have a fake intestinal obstruction of unknown origin. Does anybody think that’s a real diagnosis? I don’t. Neither does my husband. I think it’s a symptom, and my husband says it’s an apology for not being able to figure out what’s really wrong.

Incidentally, every lyme doctor I have consulted with believes my GI problems are related to my lyme infection. They also don’t think Idiopathic Intestinal Pseudo Obstruction is a real diagnosis.

Anyway, that turned out to be a big no thanks to standard western medicine doctors.

I researched more, and came across a gem of a doctor. He began practicing as a Western Medicine doctor, then suffered a number of health issues that Western Medicine had no answer for. That led him to Functional Medicine, which is the practice of finding root causes for health issues vs. the Western Medicine model of treating symptoms with pills.

My doctor found healing in the Functional Medicine approach, which inspired him to become trained and certified in Functional Medicine. So, he brings both Functional and Western Medicine perspectives and capabilities, which I believe is a powerful combination.

My first appointment was two hours. I told him my story, and he took 25 vials of blood.

The results were encouraging. Yes, he found a bunch of things wrong with me, but the things he found correlate to my symptoms, so A), I’m not crazy and B) there’s hope for improvement.

Among the more notable findings:

  • I am still testing positive for lyme disease 14 years after the tick bite, and 6 years after starting treatment. Yowza. FYI, I tested positive on the CDC- approved Western Blot. This is an important distinction, as there are many lyme tests out there, but the Western Blot is the only one recognized by insurance companies, the CDC, and Western Medicine in general.
  • I have a pattern of reactivated Epstein Barr Virus (EBV), the virus that causes mono, which I had in college. The deal is the virus lies dormant until the immune system lays down the welcome mat because it’s busy fighting another fire (i.e. lyme disease). This could help explain some of my fatigue issues. Yea.
  • I have raging cortisol (stress hormone) from the moment I wake up until the moment I go to bed, most likely because my body is working so hard to fight lyme.
  • The environment in my gut is basically toxic — the balance of bad to good bacteria is tipped so heavily toward bad that when I take probiotics they die. Literally. The bad guys just mow them down. As a result, I am not able to repopulate my gut with good bacteria, which means the bad guys are running the show. Which is not good.
  • I have markers for mold, which is not surprising because lyme makes it difficult for the body to process toxins.
  • I have other markers for lyme beyond the lyme test.

And those are just the highlights. I can’t get in to all of it or we’d be here all day.

This is such a good illustration of the way lyme acts as a wrecking ball to my body. I did not have any of the above problems before I had lyme disease. Not one.

That said, I find this information helpful and it gives me hope. My new doctor is discovering things other doctors haven’t — EBV and mold to name two — so that means new opportunities for healing. I know for a fact I still have lyme, so I’m motivated to start treatment again. I believe in my doctor, and he believes in me, and I have the deepest hope something will be different this time.

However, something is the same, and that’s the giant list of supplements my doctor is recommending (see the color coded sheet in the photo). This is very typical. Every time I start with a new doctor, they take 25 vials of blood, find 25 things wrong and recommend 25 supplements. Do the supplements work? Heck if I know. I’m not better, so that’s evidence to the contrary. However, I have not managed to lick lyme, which is the great disrupter, so it’s hard to know.

On that note, we are taking a two pronged approach: 1) Kill the lyme, 2) deal with what the lyme did to my body, and I am taking supplements on both fronts. Will this new round of treatment bring new results? Again, heck if I know. But one thing I know for sure. Doing nothing will achieve nothing. Doing something might accomplish something.

So, I’m taking the pills. Again. All of them.

I’m going to stay the course until the end of summer. I don’t expect to be cured by then, but I would hope to feel some improvement. If I don’t, my doctor and I will have a come to Jesus to discuss whether I am making progress or just swallowing pills.

That’s pretty much it. New beginning in progress. I have been at this too long to believe in miracle cures, but I am hopeful this new round of treatment will bring slow, incremental progress. I didn’t get into this overnight, and I’m not going to get out of it that way either.

Onward.

P. S. Now the disclaimer. Those supplements were prescribed to me by my doctor based on specific test results. If you think any of those supplements would be helpful for you, please, please, please discuss with your doctor, as I am not qualified to provide medical advice.

This Is Major.

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.