Anticipation

When you’re coping with a complex, chronic illness, preparing for a doctor’s appointment is an intense effort in and of itself.

_­As I described in my previous update, I went into my last doctor’s appointment with a sense of uncertainty about how well or poorly my treatment had been going. It seems like a simple question: am I doing better, or not? But while I had been carefully (even obsessively) tracking the rise and fall of my symptoms, their intensity and duration, reducing those observations to a summary impression was extremely difficult. My symptoms are constantly shifting. I never know, as a particular state is emerging (pain in my upper arms, say, or the onset of fatigue) whether it represents a transient phenomenon or the beginning of a trend. Patterns emerge only retrospectively. And often, even in retrospect, I can’t discern a clear pattern.

The Buddhist in me is trying to live day-to-day with an attitude of acceptance toward whatever is happening at the moment, to avoid attachment to whatever positive or negative state I find myself in.

At the same time, the diagnostician in me is forever analyzing patterns, hypothesizing causes, searching for answers.

And the patient in me, especially ahead of a doctor’s appointment, is simply trying to come up with a reasonably succinct encapsulation of my state that I can deliver to the doctor so that the precious thirty minutes I have with him could be used to the best possible advantage.

In preparation for my most recent appointment, I decided that the bottom line was essentially this: I was feeling a little bit better. A very little bit. On the whole, I felt I had, at times, slightly better energy. But that slight improvement existed within the context of another simple fact: most of my symptoms were continuing more or less as they had been. The question, going into that appointment, was about how my own impressions would match up against those of the doctor.

It’s that point of contact that stresses me out. The truth for many Lyme patients is that we’ve had so many doctors tell us that our symptoms don’t exist, or that they’re all in our heads, or that Chronic Lyme doesn’t exist, that we’ve been a bit traumatized by interactions with physicians in general. As a result, even when we head into an appointment with a Lyme-literate physician whom we trust, part of us is expecting to be dismissed and have our experience minimized. We’re always bracing ourselves for an experience like this:

Probably I shouldn’t speak for other patients. But it’s true for me and I suspect that I’m not alone in this. Going into any medical appointment I always feel like I’m going to have to argue hard to convince the doctor that I’m actually feeling what I’m feeling. Some of this is my own personal stuff (which, if I’m completely open about it, goes back in part to the experience of having a doctor as a father). But it’s also a significant side-effect of the Lyme Wars, which have created in patients an emotional insecurity about our own experience. As a result of having an illness whose very existence is denied by many doctors, we begin to second-guess and even distrust the proprioceptive feedback from our own bodies. Or we vacillate between over-attending to the subtleties of our shifting symptoms and minimizing their existence. The result, paradoxically, is that we can start to take on the very qualities – anxiety, hyper-vigilance, depressive detachment, etc. – which cause doctors to tell us that our symptoms are all in our heads in the first place.

Symptomatic

At the time of this most recent appointment I was pretty symptomatic. I was in a fair amount of pain (muscle, joint and nerve), pretty fatigued and definitely brain-fogged. The neurological symptoms – fasciculations, numbness, tingling – were continuing as usual. The extended travel to the appointment typically makes things worse and this time was no exception.

In many ways, manifesting symptoms during a doctor’s appointments is a useful thing. The doctor can see what it is that he or she is treating. But unfortunately, the sorts of symptoms that go with Lyme are typically not visible. Pain, fatigue, cognitive impairment – all you can do is report that they’re going on.

And it is in no way helpful to feel yourself in a cognitive fog in a moment like this. My greatest anxiety was that I wouldn’t be able to report clearly enough on my experience, and that I wouldn’t be able to fully comprehend the doctor’s reactions.

I addressed the first anxiety by writing everything out as clearly as I could ahead of the appointment, and by faxing a written summary to the doctor before I arrived.

I addressed the second anxiety with my old friend, the hand-held audio recorder.

Diagnosis: terminable and interminable

As the doctor and I began talking and I described my experience since starting treatment with his office, I quickly realized that the conversation was bound to be diagnostic in nature.

At first glance, that might seem a bit odd. I already had a clear diagnosis after all. But the truth is that a diagnosis of Lyme Disease is both an answer and a question. It is a maddening opening into seemingly endless further diagnostic speculation.

The problem is that people don’t usually have just Lyme Disease. In addition to borellia burgdorferi. Ticks carry a host of other co-infections – babesia, bartonella, erlichia, rickettsia – and it’s uncommon for someone with Lyme not to have at least one of those in addition. In my case, I’d tested negative for all co-infections. But when treatment isn’t working, good Lyme doctors will ask what else is going on that’s getting in the way.

In addition to tick-borne illnesses, there’s a host of other types of infections which seem to crop up commonlyin Lyme patients. Parasites, mold, fungal infections, mycoplasma. And there are varying forms of these infections, including the supremely creepy biofilms.

(For an actual explanation of what biofilms are, try this video.)

Perhaps some of these infections and illnesses I listed above are overlapping, I’m not entirely certain. I’m sure that some of you reading this have a much better grasp of these things than I do. But I’ll just be honest here…I have very little understanding of what these sorts of infections are and how they work. Throughout my treatment I’ve been very aggressive about educating myself in all aspects of my illness. But in this area, at least for now, I have simply met my match. It feels completely overwhelming to try to make sense of this.

As a simple example of why this feels so overwhelming, take mycoplasma. You’re not going to find a friendly self-help book on this subject. Rather, you’re going to find text molecular biology textbooks. I can read on Wikipedia that mycoplasma are bacteria that have no cell wall and that this renders them invulnerable to many common antibiotics. They can be parasitic or “saprotrophic.” I don’t know that that last word means, and I’ll probably never bother to look it up, because I’m still puzzled by the relationship between parasites and bacteria. I thought they were different things, but apparently they overlap. I know that I could do some reading and probably get this all figured out, but quite frankly my mind is already exploding. The truth is, I don’t have room in my head (or the cognitive capacity) to give myself an education in microbiology. No matter how much I aim to be an active partner in my treatment, I don’t think I can keep reading articles like this, which offers so many possible reasons for ineffective Lyme treatment that I’m left at a complete loss as to how to proceed. Or research articles like this, on the ways in which different forms of borellia (spirochetes, cysts, and biofilm-like colonies) respond to different types of antibiotics. Or even a piece like this, which tries to integrate in a relatively straight forward form all the information that is currently available on Lyme diagnosis and treatment.

All of this information seems terribly important. But I can’t take any more of it in. That was the realization that I came to as I sat listening to my doctor as he discussed these issues with me. I surrender. I can’t possibly figure it all out. And I’m done trying. I’m going to place myself in his hands. I’ll let him make the call and I’ll trust his judgment.

It’s not easy for me to let go like this. But – at least until I regain some better cognitive functioning – I feel like I don’t have much choice.

The Conversation

I think that the best way that I convey the complexity of the on-going diagnostic process in chronic Lyme is simply to quote some of the conversation that I had with my doctor. To set this up, I should start by repeating the question that I asked my doctor which provoked his extended answer. I thought a lot about this particular question before my appointment and it proved to be an extremely productive question to ask. (If you’re coping with a chronic illness, I’d encourage you to try it out on your own doctor.)

The question was simply this: “what does it look like in the patient when the treatment for Lyme Disease is starting to work?”

In his response, my doctor never answered that question directly. But in the course of speaking about the question he said three things that were extremely helpful to me:

1. Most people get better with treatment
2. Thus far you are not responding to your treatment in the way we would expect
3. You’re very far from being an intractable case

These three pieces of information were so valuable to me. They gave me a way to hold in mind the progress (or lack thereof) in my treatment. And as we explored the basis for these statements, he gave me a circuitous but instructive discourse on the nature of his diagnostic thinking.

What he said was this:

If you just do the antibiotics against the Lyme and you just try to slam the shit out of the bugs, it’s probably not going to work. When someone has neurologic issues, both peripheral and central, from Lyme, it’s usually that the Lyme may be the central organizing organism, that makes other things that wouldn’t ordinarily matter matter – but there’s layers of illness. There’s borellia, that’s often at the core of this, but there is the Epstein-Barr and the CNV, sometimes these co-infections even in the face of negative tests, such as Babesia and Bartonella and Erlichia and Rikettsia, and now there’s the question of XMRV.

Then there’s also mold exposure. There’s so much mold in this world. Mold is definitely one of the things that – if you haven’t really had any improvements over the last five months on treatment – and sure, Lyme is still potentially a player, but it may not be the most superficial layer that needs to be squashed. And so I think it deserves looking at some of these other things.

Some of it’s also possibly de-tox issues, that your body doesn’t remove the toxins and so you keep creating this inflammatory response in your brain and other places, because your body is making all these cell chemicals that make your body think that it’s still fighting an infection.

Now, that’s not to say that there’s not an infection. But sometimes the infection is very active and it’s easier to treat when it’s very active, and sometimes it’s just sending enough signals to screw up your body.

So the people who get better are the ones who are kind of open to that concept. So it’s like, yeah, there’s Lyme, but let’s look at the whole picture and take this in layers.”

This was all terribly overwhelming. I took a deep breath and formulated a question:  what does that mean in terms of my treatment? He responded:

It means looking at your symptoms, which are the big ones? Brain fog is related to ammonia, which could be related to yeast, mold, or brain fog is also related to Bartonella. Memory – could be Lyme, could be inflammation, or it could be viruses. Fatigue – all of the above. Joint pain – the same. Muscle pain – the same deal. Nerve pain and zaps, buzzing and fasciculations, numbness, tingling – Bartonella is what I think of the most, heavy metals a little bit, mold, viruses. And a stiff neck is often Lyme, purely Lyme typically. The two-week cycles is not typically Lyme, it’s typically parasites or even Bartonella or viruses.

And then he said, in not so many words, that due to the status of the science he had no choice but to use treatment as a form of diagnosis.

The hardest part is that science isn’t really as smart as your diseases are. And so we have to kind of be cowboys a little bit and actually do things because we think that’s what’s going on. And then watch your response to treatment. The biggest issue with that is that sometimes – you know, I think you have Bartonella – the treatments for Bartonella, some of them, can be toxic for you. So that’s kind of my big issue is that, okay, to give you something that, you know, if I’m not totally sure that you have it, could potentially harm you. One, how much can we protect you? And two, how much is it likely to help? So we’re playing that risk-benefit analysis.

I’m not sure how other people will hear this last paragraph. I’m a bit anxious about including it here because I could imagine it being taken out of context and used to argue that LLMD’s are knowingly giving their patients risky treatments.

But I’m going to leave it in because I’m actually confident that it demonstrates an extremely ethical approach to treatment. First, because he is simply being honest about the state of the science around the treatment. Without that honest assessment, I cannot possibly make good treatment decisions for myself. Second, because what he’s doing as he says all this is providing me with proper informed consent. He’s explaining the sorts of decisions that he’s making on my behalf, which gives me the opportunity to refuse them if I believe they’re too risky. And third, he’s explicitly outlining the risk/reward assessments that are part of all medical decision-making.

So the question remains: where do we go with my treatment? And his answer takes this form.

You’re not meeting expectations. With you we haven’t hit the right thing. We haven’t gotten in yet. Despite all this that we’re doing and you’re doing, we haven’t actually gotten you on that right cycle yet. I think we’re just groping in the dark a bit as to, you know – we know that you have Lyme, we don’t know if you have anything else other than the viruses, so let’s just go after the things that we know. Let’s go in and look for things and maybe there are some sleeping dogs in there. Let’s kick those sleeping dogs and see what happens.

Kicking the Dogs

So here are the medication changes that he actually ordered.

First, I was to discontinue the medications that didn’t seem to be helping. And luckily for me, they were all medications I was happy to give up. I no longer would be taking Cholestyramine, which had been prescribed as a neuro-toxin binder and which made my whole medication schedule much more complicated because it had to be taken hours apart from all my other meds. I was also taken off of Tindamax, which had been generally making me miserable.

But the best news was that after an additional three weeks, I going to stop doing my Rocephin injections. As I described in my last update, those injections had really been making me miserable. In fact administering them was verging on a traumatic experience. I started counting down the days until I could stop stabbing myself in the butt.

Next, I was to phase in a series of new medications, adding each one 3-4 days apart so that if I had an adverse (or otherwise noticeable) reaction to any of them we’d know which one it was. In the order I added them, the new meds were:

Rifampin – an antibiotic commonly used to treat Tuberculosis, which has the entertaining side effect of turning your urine orange.

Lamisil – an anti-fungal, often used topically on infections of the finger- and toenails.

Plaquenil – an anti-malarial, which in my case was being used to potentiate Zithromax (which I was continuing to take).

Septra – a combination of two different antibiotics used to treat a wide range of bacterial infections.

In addition to these new pharmaceuticals, I was to begin taking a set of additional supplements, among them Yucca Root, Pinella and Cumanda.

All of this is in addition to all the other supplements and medications I’m taking, for the Lyme and everything else the other on-going issues: fish oil, Myomin, olive leaf extract, magnesium, Simvastatin, Ranitidine, B-12 injections, and my old friend testosterone cream.

It’s a lot. Every Sunday, I spend a half hour or so sorting out my meds for the week. When I’m finished, the result is three separate pill boxes, stacked high.

In addition to medication changes, the doctor also ordered a new round of blood tests for mold and fungal type infections. I didn’t fully understand what all of the tests were and I haven’t heard the results yet, but I’m anxious to learn what, if anything, they show.

Response to treatment

Starting any new treatment is an inherently hopeful moment. And I needed an injection of hope. Over the past three months I’d been struggling intermittently with bouts of hopelessness. Understandably I suppose, since my entire life was organized around healing and I wasn’t getting better. It could get disheartening. I tried to cultivate equanimity, to avoid latching on too much to my ever-shifting symptoms. But sometimes I succumbed to despair, I let myself sink into the depressive thought that things were never going to get better.

In this regard it was interesting observing my reaction to my doctor’s assessment that I wasn’t responding to treatment. That could have been quite a depressing statement, but in fact it was quite a helpful thing for me to hear. Because the words he spoke matched my inner experience. It was validating. And, paired with the statement that I wasn’t “intractable,” and with a new set of treatments in place, I allowed myself to feel a bit of hope.

The treatment over the past three months didn’t feel wasted. It had given us additional information which allowed us to point my treatment aggressively in some new directions.

So I started phasing in the new meds, starting with Rifampin.

And two days in, something interesting happened. I woke up one morning and my head felt remarkably clear. Not my body – which continued to feel the same muck and pain that I’d been feeling at the doctor’s office – but my cognitions. My thoughts had energy. I felt like I’d woken up.

My wife noticed it before I even mentioned it to her.

“You look good,” she said.

“I know,” I said. “It’s weird. I just woke up feeling clearer.”

That morning I sat down at the piano and improvised for a few minutes and the ideas just flowed. And as I biked to work (yes, I’m still managing to bike around town, and I’m still managing to keep a small caseload) I watched my mind in motion. There was no effort in it. I was just thinking about things, having ideas. It’s hard to convey how much this disease has stolen from me the basic capacity to think clearly and creatively. I hadn’t fully realized it myself until that morning, until I could see the contrast. This was how I used to feel all the time, this easy, inspired flow of thoughts. When I got to my office I pulled out a pad and wrote down a list of the things I wanted to do. I could imagine a set of blog posts I wanted to write. I saw in my mind the proposal that I’d like to put together for a book about this whole experience. There was music I wanted to compose. I wanted to get back to studying Chinese.

This wasn’t simply the desire to do these things. This was my mind starting the work of creating. This is the quality of thinking that I’ve lost to brain fog. In brain fog I can still slog my way through a piece of cognitive work – like putting together this blog post, which is weeks in the writing. But it is an intense effort and it takes a long time and it’s exceptionally difficult to hold the larger shape and meaning of the piece in mind as I work.

All of this used to come effortlessly. And for a few hours I had it back. But soon I could feel the clarity fading. By the end of the next day, the window had closed. I was back in the cognitive mire. I haven’t felt that clarity again since, but I’m encouraged to know that it’s still accessible.

By now this is an old, familiar puzzle: was this a reaction to treatment or just a blip in my otherwise ongoing symptom cycle? I simply don’t know, but since this clarity hasn’t re-emerged, I’m inclined to think of it as an anomaly.

I continued adding in the new drugs. Lamisil. Plaquenil. I saved Septra for last because my wife had taken Septra in the past and said it was a pretty rough experience. I wanted to wait to start it until after my Rocephin injections were finished.

Physically, I was continuing in the same lousy state that I’d been in since before the doctor’s appointment. (That was true even during the cognitive clearing.) But as I got all the new meds added, things got worse. I had one of the worst weeks I’ve had in a long time. The most acute symptom this time was muscular pain on the outer sides of my upper arms, pain which radiated into my shoulders. It’s oddly localized, but consistent with a typical feature of my symptoms through my illness. My upper body and arms have always been particularly vulnerable. Even when I’m feeling my best, using my upper body vigorously (raking leaves, for instance) will always trigger a bad reaction. I have never understood this, but it’s a fact of my existence these days.

I spent a good part of that week in bed, fatigued and hurting. Then one night I felt another shift inside: I lay awake in bed unable to get to sleep. This is very unusual for me. My experience through most of my illness has been one of heavy fatigue. Generally, it’s hard for me to stay awake. So this physiological arousal was odd. I gave up on trying to sleep, got up and wrote a bunch of over-due emails. When I finally got to sleep, I slept restlessly and had anxiety dreams. I realized that I haven’t been dreaming – at least that I remember – for some time. I was certain that the lack of sleep would make me miserable the next day.

But oddly I didn’t feel tired at all.

It was strange, and it persisted. And there were other changes as well, not all of them pleasant. In particular, I realized that I’d started experiencing a generalized anxiety. It wasn’t triggered by external events – I didn’t have anything new in particular to worry about. What I noticed was that I was becoming acutely anxious about the same things that I’d been only moderately worried about for months.

Now, anxiety is an old friend of mine. We’ve been traveling companions for years. He used to be like a pit bull prowling around my brain but these days he’s more like a chihuahua, nipping at the edges of my thoughts.

I’ve spent countless hours in therapy training myself to hold this anxiety in perspective, how to reduce it to the degree possible. I’ve learned how to co-exist with it and to minimize the stress it causes me.

(Which, by the way, is why I just laugh when doctors suggest that anxiety is the source of my illnesses. They say it as if I would never have considered this possibility. They have no idea.)

The therapeutic work that I’ve done on my own anxiety allowed me recognize that the sudden return of my pit bull anxiety was not driven by mental health issues. This was  clearly physiological in nature. There were other physical corollaries as well. I felt – feel, actually, since this hasn’t changed – like my metabolism is revved up, almost jittery, as if I’ve drank too much coffee. It’s not a pleasant sensation.

I still don’t know what to make of this shift. But fortunately there are positive changes that come with it as well. Although I’m not sleeping as well, I’m also not feeling fatigued during the day – which is a strange and refreshing turn of events.

And there’s another positive physical shift in me that’s very encouraging but difficult to describe. It’s a quality of energy in my body. I not talking so much about how much strength I have do things (although this has improved somewhat) but rather about the way the energy in my body feels to me – which is clearer and cleaner. My body feels less toxic. That’s the best way I can describe it.

On the down side, this physiological shift hasn’t affected my cognitive state at all. My memory is still a mess. My brain is still mud. I long for another taste of that cognitive clearing I experienced a few weeks ago.

Guesswork

I don’t know exactly what’s going on, but clearly something is shifting. And I think it’s positive. As I write, I still feel the physiological agitation and anxiety, and I still feel some of the physical “clearing.” At the same time, the arm and shoulder pain has come back, rather intensely. It is – as always – a confusing mix of symptoms. I have my phone follow-up with the doctor next week and I’ll be anxious to see what they make of it all. But my hunches about what’s going on are these.

• The doctor was right about some other sorts of infections (parasites, fungal, whatever) being the predominant force in my body right now. I suspect that with my immune system weakened by Lyme these other bugs (which probably wouldn’t have taken hold earlier) moved in opportunistically.
• The new medications are actually going after whatever this infection is.
• My really bad week was a herxheimer reaction to those medications working against that unidentified bug.
• The physical clearing I’m feeling is the effect of one layer of illness being cleared away.

It’s all guesswork on my part, of course, and I’m anxious to see what the doctor thinks. But it feels like a reasonably coherent theory. What it doesn’t explain is why this clearing is accompanied by so much physiological arousal and anxiety. And there is much that remains to be addressed, not the least of which is my sludge-like brain. But even with all of these open questions, at this moment I’m feeling more hopeful than I have for some time.

Read the next post in the Life with Lyme series here.