Life with Lyme 5

Jun 162011

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:

Most people get better with treatment
Thus far you are not responding to your treatment in the way we would expect
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.

Life with Lyme 4

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May 122011

Brain Fog

It’s been a long time since I’ve been able to write an update on my treatment for Chronic Lyme Disease. And the reason is simple: brain fog. Over these past few months, since starting treatment with a new doctor, my brain has been so muddy that it’s been hard to think clearly, hard to read and very hard to write. It’s not a new problem, but it’s been distinctly worse lately.

So this might not be the most coherent and finely-honed post I’ve ever written.

As has been the case throughout my illness, I have a hard time knowing what the specific cause of this particular symptom is. Could be that this is simply the continued effects of Lyme. Or – and I prefer to think that this is the reason – it could be that the (many) new drugs that I’m taking are working, they’re killing off the bugs inside me and the deterioration in my cognitive processes is a sort of herxheimer reaction to the die-off.

Either way, it’s bad. As an author and a psychotherapist, I live and work in my mind. When my capacity to think – clearly, quickly, incisively – departs, I’m at a loss. And I don’t feel capable of doing the things that make me feel alive and worthwhile, like I’m contributing something to the world. I’m lost to myself.

The latest victim in this cognitive massacre has been my memory. Although I’ve heard many Lyme patients describe their failing memories, I haven’t experienced it too badly until just recently. The first time I really noticed it was last month I was in New Orleans, where I was doing a presentation on my book at the American Counseling Association annual conference. I went out to dinner with a good friend and as we were talking our dinner arrived. But the problem was, I couldn’t remember having ordered it. Clearly we had, but I had no memory of it.

Since then I’ve had a string of moments like this. Often they come up in conversation with my wife. She’ll start talking about something as if I should understand what she’s talking about, but I quickly realize that I have no idea what she’s referring to. I interrupt her to try to ask for a clarification and she gets this look in her eye and I realize that it’s happened again. She’ll proceed to describe to me the conversation we’d previously had. I don’t remember it.

It’s extremely unnerving.

The cumulative effect of all of these cognitive problems is pernicious. To use an immediate example, I’ve set out to start writing this post innumerable times. I keep giving up. It’s just too hard to think clearly. It’s depressing to watch my thoughts wither away as I try to tease them onward.

I’m motivated to write this now because I’m about to return to my doctor for a three-month follow-up.

We’ll see how this goes.

New Doc

As I described in my previous update, I decided to switch physicians after six months of (mostly alternative) treatment from my local naturopath failed to produce results. She referred me to a Lyme specialist in California who had trained her. And in February, with a mix of anxiety and hope, I flew out for the appointment. I spent an hour and a half with one of the three clinicians in the office (they share the caseload and I’ll be seeing each of them on different visits or phone consultations).

As a clinician myself, I pay a lot of attention to how that initial interview is handled. I’m assessing the clinician’s diagnostic thinking. And I’m also attending to their relational stance toward me as a patient. Am I being seen in a compassionate manner? Am I being listened to, heard and taken seriously? Am I being instructed on what to do or am I being treated as a partner in my treatment?

I was impressed at the tenor and quality of the interview. We discussed the long and confusing course of my symptoms. We looked at the larger trajectory of my life and the underlying issues that could be affecting the success of my treatment (in particular my testicular cancer and ensuing hormonal issues). We looked through my lab results from Igenex and walked through their interpretation. (My naturopath had done this with me previously but this was a more detailed and sophisticated explication – while a bit redundant, it was very important, confirming once again the reality of my diagnosis.)

But at the same time we confirmed the Lyme diagnosis, we did not foreclose the possibility of other co-occurring conditions. That’s good diagnostic practice, and it’s not something that all doctors do well in the rush to pin down an diagnosis and initiate treatment. As I’ve said from the beginning, the art and science of diagnosis are require us to manage our need for closure, to continue throughout the course of treatment to challenge our diagnostic assumptions by periodically introducing and ruling out differential diagnoses.

(That’s why, incidentally, while many people in the Lyme world aren’t happy about this news story about a woman who was inaccurately diagnosed with Lyme Disease, I actually think it’s a very important cautionary tale. It’s tempting, when you live in a world where there the validity of your condition is under constant attack, to reflexively defend anyone who acknowledges the existence of chronic Lyme. But it seems clear to me that accurate diagnosis is just as important as validating the reality of this disease. While Lyme is clearly spreading rapidly and represents a serious public health threat, making the claim that a majority of the population has Lyme isn’t helping matters.)

By the time my appointment was over I felt that I’d been well-heard and respected and I was ready to accept whatever treatment recommendations I was given. I wished that I could have been given a clearer sense of my prognosis and how long the treatment would last. But I knew the basic facts going in. With long-term antibiotic treatment, most people get a significant remission of symptoms. A smaller set of patients improve, but don’t receive a full remission of symptoms. And maybe five percent of people don’t get better at all. The length of treatment is variable. Some people get better after 7-8 months, but a year and a half on antibiotics seems to be common. Some people go significantly longer than that.

So while I wished that I could have come away from the appointment with a more specific set of expectations for my treatment, I understood that no one could really give me an answer to these questions. This lack of knowledge is a frustrating side-effect of the crazy political battle in the medical community around the diagnosis of chronic Lyme. The controversies inhibit effective research, which is essential for developing better understanding of the disease, and better treatments. In battles like these, truth is the first casualty.

After we finished talking, the doctor got out a sheet of paper and started writing. Fifteen different medications and supplements. It was going to be a big shift in my life, and a big expense. She walked through each of the drugs and supplements, explaining what they did and what they were for. There were two antibiotics – one taken orally, the other of which I’d be giving myself as an intramuscular injection. An anti-protozoa medication called Alinia. Cholestryamine – a cholesterol medication which would be used as a “neuro-toxin binder.” Urosodial to prevent one of the other medications from causing gall stones. High doses of magnesium to combat my joint symptoms. Self-administered injections of B-12. And others.

I would have been anxious about remembering all of that information, but I did something at that appointment that was extremely helpful to me and that I would recommend that everyone do at any meaningful medical appointment: I brought a hand-held audio recorder to document the conversation. Stressful medical appointments like this put so much demand on the patient to retain information accurately. That’s why I usually try to have another person with me at important appointments. In this case I was on my own. But my recorder served me well. On the flight back home I listened back to the entire interview, making notes and clarifying points that had been confusing to me. It’s a technique that I highly recommend for others going through intensive and complex treatment of this sort.

After the interview was over I met with a nurse in another room and he taught me how to give myself the Rocephin injections that I would be doing four times a week. He mixed the powdered medicine with Lydocaine, filled the syringe and showed me how to administer it to myself (more on all of this in a moment). I was relieved that it didn’t seem to hurt too badly. But then, in the car driving back to my motel, the pain kicked in. This was going to be hard.

New Meds

When I got back home the first thing I did was to start working with my local pharmacist figuring out how to fill all of my prescriptions. She took a look at the list and let out a little gasp. “This is going to cost you,” she said. One drug in particular – Alinia – was through the roof, about $1800 for a month’s supply. The total for everything (after the paltry help that my insurance kicked in) was around $2500 for a month’s worth of medication. I spent several days getting all of the meds. Some of them I couldn’t get through my usual pharmacy. The B-12 injections I had to order from a compounding pharmacy in New York.

As I assembled the new meds, I sat down to map out my daily schedule. “The Grid” is what we used to call this when we did it for our children when we were young, when their schedules became too complex for us to hold in mind. I did it for myself because, especially with my cognitive struggles, I really didn’t trust myself to remember when I was supposed to administer which of my drugs. The med-map looked like this: I took a large fistful of pills and supplements first thing when I woke up. Then two or three hours after that, I took my first packet of Cholestyramine, which has to be taken apart from other medications because it “binds” whatever’s in your gut in order to clear it out of you. Three or four hours after that I took a few additional supplements, along with a massive dose of probiotics (both capsules and liquid). Probiotics are essential when you’re on heavy and sustained antibiotic treatment, because they replace the “good” bacteria in your gut that’s getting killed off by the antibiotics, and in theory stave off candida overgrowth that can result from this. But although I need to get a lot of them into my system, I can’t take them at the same time as the antibiotics or the Cholestyramine…so there are a just a few windows during the day when I try to get as many of them down as I can. Three or four hours later, I take my second dose of Cholestyramine. Then, before bed, I take another large handful of drugs and supplements, and another megadose of probiotics.

In addition, I give myself injections of B-12 three times a week – Monday, Wednesday and Friday. And four days out of the week I give myself an intramuscular injection or the antibiotic Rocephin.

And of course I continue to take the medication I was on before this – thyroid meds, a statin, topical testosterone.

Keeping track of it all is exhausting. I have my grid, of course. And a collection of very large weekly pill boxes. But if I’m going to be away from the house for more than a few hours I have to think carefully about what I need with me. And travelling requires a serious mental effort in order to insure that I have with me what I need.

Injections

Over the past year, I’ve gotten used to giving myself small injections. For months last year I made up daily syringes of Human Growth Hormone. But those injections (like the B-12 shots that I’m now giving myself as well) are child’s play next to the intra-muscular Rocephin shots I have to give myself now. They’re like flu shot writ large. The needle – an inch and a half long) has to get down into the muscle, and the medicine as its injected (and afterwards) really hurts. There are ways to damp down the pain a little, but there’s no escaping it altogether.

The injection schedule is four days on, three days off. I’ve chosen to administer them on Thursday through Sunday, so that I’m dealing with them on days when I’m teaching or seeing clients. The process: 1) assemble the syringe by screwing the needle on 2) take a bottle of Lydocaine and draw up 4.2 ccs into the syringe 3) put the needle into the Rocephin container, inject the lydocaine and then shake up the container for 4-5 minutes until it’s completely dissolved 4) pull down my pants and swab the upper part of one of my butt cheeks with an alcohol wipe, then take a deep breath, push the needle into my butt, then slowly push the plunger until all the medicine is in. (If you’re interested, here’s a Youtube video demonstrating how to administer an IM injection, which was very helpful to me when I first started the shots.)

Psychologically, the hardest part of this process is actually inserting the needle. Frankly, I don’t quite know how I do it. At some point you simply have to will your hand to push the needle in. It happens, somehow, every time, but it seems almost like it happens by magic. When I observe my mind as I do this what I notice is that rather than making a conscious choice to push the needle in, my mind actually seems to turn off for a split second and my hand moves forward automatically. It’s a very strange experience.

It actually helps somewhat that a lot of my body is partially numb due to the Lyme. I often don’t fully feel the needle going in. But injecting the medication does hurt. And it keeps hurting. I give myself the injection before bed so that I can sleep through the worst part of the discomfort. But even so, I’m usually walking around with a sore butt these days.

While the pain is definitely unpleasant, the harder part of doing these injections is emotional. They get me quite depressed. Each of them makes me feel acutely just how sick I am, cuts through the layers of denial I use to move forward in my day-to-day life. Each of them makes me wonder whether I’m going to be doing this for years, or whether I’m ever going to get better. I recognize that these thoughts aren’t helpful and I’m working actively to change how I think about my treatment. But it’s hard.

Progress report

So, is it working?

It’s been three months on the new regime, and I don’t have a clear answer to that question. The reason it’s difficult has to do with the cyclical nature of Lyme symptoms as they relate to the cyclical cycle of herxheimer reactions. My Lyme symptoms seem to be continuing in two-week cycles: two bad weeks followed by two not-so-bad weeks. As I’ve described in the past, figuring out the difference between a bad Lyme episode and a herxheimer reaction has been exceedingly difficult for me. Determining the larger symptomatic trend within these overlapping cycles feels nearly impossible. It’s essentially a statistical question. Given a set of health information (specific symptoms, their frequency and their severity) as it evolves over time, it’s theoretically possible to use mathematical formulas to determine whether or not there’s a meaningful pattern, a trend within that information. Taking the data available at a single point means little or nothing. That’s like trying to assess the magnitude of climate change by looking at the weather report for a single day. But if you’ve gathered enough information over enough time, it ought to be possible to answer a simple question: am I getting better, getting worse, or staying the same?

Of course, even if I had all the information necessary to answer that question, the data itself would be subjective. There’s no objective scale with which to measure my energy levels, my mental clarity, the intensity of my pain. As you can tell, I don’t particularly trust my own capacity to report accurately about my own symptoms, my own progress or lack of it.

Still I try. I do this by focusing on the times when I feel somewhat better. I ask myself whether this “better” is a better better than the last one.

On the whole, I think that things have been getting slightly, incrementally better. But I’m not really sure. Which is why one of my hopes for this upcoming doctor’s visit is that I can get a more objective assessment about all of this.

So what seems better?

I haven’t had any episodes of abdominal pain, for maybe two months
Joints: although I still have joint issues (see below), the problems with my hands (trigger finger in the morning) are significantly better
Energy: when I’m in the better part of my cycle, my energy seems better than it used to be.

And what are my continuing symptoms?

Brain fog – waxes and wanes, but still pretty bad, most of the time.
Memory –much worse.
Fatigue – waxes and wanes in 2-week cycles. When it’s bad I need a lot of sleep, but no matter how much I sleep I still feel tired.
Joints – although this is somewhat better (see above) it’s definitely still an issue. My right knee has been hurting pretty consistently for a few months now. Shoulders and elbows sometimes hurt, sometimes don’t. Lately in the mornings the joints in my feet hurt. The issues migrate.
Muscle pain – this hasn’t been my most prominent issue lately, but I still feel it intermittently. It tends to be mostly in my upper body, especially my arms.
Nerve pain/zaps – been getting lots of these, especially in my feet and toes lately.
Fasciculations – these have remained pretty constant. As they have been for the past 2-3 years, they can happen anywhere in my body, although they tend to hang out in one or two areas (my butt, my wrists, around my knees) for a couple of days at a time. They’re not painful but they drive me crazy.
Stiff neck – this has been constant and unchanged for nearly two years now.
Numbness/tingling – I still have lots of this. Some spots on my limbs seem like they’re permanently anesthetized; numbness in my hands and feet comes and goes.
Buzzing – I still get a lot of that odd buzzing sensation beneath the surface of my skin. It happens all over my body.

Side Effects

I’ve had two phone follow-ups since my initial visit to the new doctor. After the firstcall we left everything as it was. But at the second one we made a few changes, most importantly changing Alinia for Tindimax. The first few weeks on this new medication were particularly hard, definitely the closest thing to a clearly-identifiable herxheimer reaction that I’ve ever had – I was wiped out, in pain and just felt generally sicker. As that reaction eased off, I noticed a bad taste in my mouth. A terrible taste. Like…I don’t know how else to describe it…burnt flesh. My tongue was coated with an unpleasant velvety material, and was discolored. And my teeth seemed to be growing discolored as well.

It was a classic reaction to antibiotics, one had had thus far managed to avoid – a candida overgrowth. I thought I’d been doing a pretty good job balancing out the inevitable effects of taking heavy doses of antibiotics. I was taking huge (and expensive) daily doses of probiotics. I tend to eat a pretty healthy diet most of the time. I eat very little sugar, which yeast feeds on. But I do eat wheat. I’d been relieved through all of this that, unlike so many people with Lyme, I’ve never developed a gluten intolerance. But wheat converts to sugar and feeds yeast, so now I’ve cut it out. I’d been limiting my alcohol intake, but I cut it back to zero. I switched toothpaste and mouthwash brands and got even more aggressive than usual about my oral hygiene. And, after talking with the doctor I started taking Nystatin as yet one more weapon in the fight against candida.

Though I’m well aware that this is a common risk of antibiotic treatment, still it’s been a distressing, and depressing, two-week battle. It’s hard to convey just how globally your experience can be influenced by a bad taste in your mouth. It’s not something that slips out of your consciousness. Psychologically, it keeps interrupting your experience much in the way that pain does.

The distress is magnified by my awareness that my treatment itself is making me sicker. And the depression is heightened by the losses. Throughout the course of this illness I’ve had so many things that give me pleasure and satisfaction stripped away. I find myself clinging to the things that I still have. A glass of good wine is a small comfort. And so is bowl of well-prepared pasta. I’m so reluctant to let these things go. I know but sometimes I feel like throwing a tantrum, throwing myself on the ground and pounding my fists on the floor.

But I’ve done it. A significant change in diet, medication and oral hygiene has mostly beaten back the candida.

Now we’ll see if I can keep it up.

As I write, I’m sitting at the airport, waiting for my flight to California. There are other things I’d hope to talk about in this post, in particular I wanted to write about the struggle I experience to let myself be sick. As I observe myself as I go through this treatment, I’m amazed at the ebb and flow between denial and acceptance of my condition. It’s a fascinating process and I think that understanding it better will help me a great deal to be able to work more productively with the ways in which my mind is making sense of my illness.

If the brain fog doesn’t make it impossible, I’ll try to write more about that soon.

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

Life with Lyme 3

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Jan 182011

Preparing for change

It’s been over half a year since I was diagnosed with Lyme disease. Since that diagnosis, as those who have been following this blog will be aware, I’ve been working with a local naturopath trying to beat back the illness. In this post I’ll be describing how those efforts have been going and how I have come to the decision to make a significant change in my treatment.

First, a quick review.

I started my treatment back in June, even before I’d formally diagnosed. My doctor prescribed 30 days’ worth of Doxycycline presumptively, while we waited for my Western Blot results to come back from the lab.

That, incidentally, is what the CDC says is required to treat Lyme. According to those standards, I should be cured. But obviously that didn’t happen. Those antibiotics, as a friend with Lyme puts it, might as well have been Tic Tacs for all the effect they had on me.

Although antibiotics are the front-line treatment for Lyme – whether it’s caught early or has become chronic – they also come with risks. Using them, you become vulnerable to opportunistic infections. They can weaken your own immune system’s ability to fight illness. And of course there’s the collective problem that the more they are prescribed, the more opportunity organisms have to develop immunity to them, creating a societal vulnerability to emerging illnesses.

My naturopath isn’t entirely opposed to using antibiotics to treat Lyme, but she definitely prefers treatments that bypass those risks. So that’s where we started. In addition to some herbal treatments (like Allicin) she gave me several IV hydrogen peroxide infusions. I hadn’t heard of this form of treatment before – and apparently there is some degree of controversy surrounding it. The way she explained it to me, hydrogen peroxide introduces and oxidative agent into your blood stream that borellia doesn’t recognize as an antagonist, so it’s able to kill the bug before it has a chance to try to defend itself.

I was willing to give it a try. I had several peroxide IVs back in September. They didn’t seem to affect me at all. You might say that I was getting my Tic Tacs intravenously.

So we moved on. First I briefly returned to antibiotics (Amoxicillin this time) which we abandoned after several weeks in favor of the Chinese herbal treatment known as the Zhang protocol. This sounded okay to me, in part because Chinese herbal treatments had helped me in the past, and also because these herbs had been used for centuries in China to treat Syphilis, which like Lyme is a spirochetal disease.

After a month or so on these herbs, it seemed like they might be having an effect: I got a little worse. I wasn’t sure whether it was a response to the treatment or just a normal part of my symptom cycle, but my naturopath was hopeful that I was experiencing a herxheimer reaction – a temporary worsening of symptoms which occurs because of the die-off of the bug. We agreed to give the protocol time to work – three or four months we said, then we’d re-evaluate. During that time I had a few more peroxide IVs as well, in the hope that the combined effect would help me turn the corner on this disease.

Turning Point

In my primordial, Norman Rockwell version of medical care, I’m not the person who has to tell my doctor that his or her treatment isn’t working. In my mind – I know this is a fantasy, but bear with me because it’s a fantasy that gets a lot of us all into a lot of trouble – in my mind my doctor is all-knowing and benevolent. His diagnosis (in this fantasy he’s invariably male) is accurate and his treatment is appropriate. Even if the diagnosis is bleak, even if the treatment isn’t helping, I can relax into his care, knowing that my needs are being met as well as humanly possible. I can let go and feel held and cared for.

In this fantasy, medical care feels a lot like love.

(When I put that fantasy into words, I immediately feel sorry for doctors. All that unmet need being projected upon them, all the time. It’s no wonder that so many of them grow calloused, dismissive and minimizing.)

Up against that fantasy is the reality is that unless I am a fierce advocate for my own diagnosis and treatment, nothing will happen at all. This is true of medical care in general, and it’s especially important with diagnoses of a complex and chronic illness like Lyme, which is controversial to start with and for which treatments vary greatly in their effectiveness.

As a Lyme patient, I find that there is nothing relaxing about my relationship with my medical caregivers. No matter how concerned and caring my doctor seems, I know in my gut that it’s up to me take responsibility for guiding my treatment. I’m constantly monitoring and assessing my symptoms, trying to make the decisions for myself that I wish someone else could make for me. Which is how I knew that it was ultimately up to me to answer the current pressing question: is this treatment working, or not?

An aside about attachment

Perhaps as you read that last passage you recognized that what I’m really talking above is attachment security in adult relationships. As a psychotherapist my theoretical focus is grounded in attachment theory, which is a rich framework for understanding the way in which we come to be able (or unable) to form trusting and flexible relationships with other human beings.

The hallmark of a healthy attachment is a balance between intimacy and autonomy in our relationships, which includes the ability to move fluidly between those two poles. Ideally this is a capacity we gain in infancy from secure parents.

But if our parents struggle on one or the other sides of this equation, we will too. If they struggle with intimacy, we’ll find ourselves anxious when we get too emotionally close to others; If they struggle with autonomy, we’ll wind up anxious about our capacity to live independently without another person to prop us up.

And whatever style we wind up with, our particular attachment-related anxieties will always get activated whenever we find ourselves in care-giving or care-receiving situations. As we are every time we step into a doctor’s office.

This is a larger subject than I can go into here (although I’m tempted to write an entire post on it in the future). For the moment I simply want to point out that the way I approach relationships with medical professionals is informed by my underlying anxieties about relationships in general. In my case, the reflexive assumption (which is a reflection of my own relational history) is that I won’t be able to receive the care I need. That I’m essentially on my own.

What’s important about this is that it can easily flip into its opposite. Beneath the belief that no one will ever give me the care I need lies the fantasy that someone out there somewhere will be able to care for me perfectly.

Both sides of this contradiction are likely to be in play whenever I’m at a medical appointment. In my own anxiety I tend to simultaneously crave understanding for what I’m going through while also trying to minimize just how badly I feel.

Usually I can stay conscious enough of this dynamic to contain any confusing behavior and form a constructive relationship with my doctor. But on a bad day the doctor might be getting a mixed message from me in which I simultaneously demand that they care for me perfectly while also insisting that they can’t possibly do that.

And of course that’s going to meet up with whatever attachment anxieties that the doctor brings to the relationship. Ideally, that doctor will secure enough him or herself to be able to avoid getting tangled up in my projections. But doctors are human too, and they’re subject to the same relational anxieties as the rest of us.

I’m confident that many people with chronic illnesses go through some version of this struggle. Personally, I try hard to stay aware of it so that I can rein it in as much as possible. But I’m acutely aware that these attachment anxieties are going to be especially activated at the point at which I make a decision to see change doctors.

Which is where this is all heading.

Is it working?

So, back to that essential question.

In trying to figure out whether my treatment was working I focused first on my symptom pattern. Prior to starting the Zhang protocol I’d experienced a few months of a pattern that seemed somewhat stable: two bad weeks, followed by two not-so-bad weeks. But in the past three or four months that pattern has evaporated. I still have good days and bad days (often it feels more like good hours and bad hours), but it’s grown harder to predict when each will come.

Making sense of symptom patterns over time is a basic diagnostic skill. As I’m preparing to teach a class in mental health diagnosis this Spring, I’ve been thinking about how crucial this skill is in making an accurate diagnosis of mood disorders like Depression or Bipolar disorder, which are defined by episodes which occur over time. Identifying the larger pattern is essentially a statistical task: when you smooth out the individual spikes and dips, what does the overall pattern look like?

When I took this approach to my Lyme symptoms, what I saw was a continuing gradual decline. If the treatment was working, the dips (which would partially consist of herxheimer reactions) would be more than offset by the improvements. I still wasn’t sure whether my worst episodes were herxheimer reactions or just general Lyme crumminess, but either way, they weren’t resulting in overall improvement over time. The bad times kept feeling a little worse. And new symptoms kept emerging.

Why I’ve stayed with this treatment so far

Over these past months people have asked me – and I’ve asked myself – whether I shouldn’t be going straight to a doctor who would prescribe antibiotics. After all, antibiotics are the primary recommended treatment for Lyme. I asked myself: am I wasting valuable time pursuing these alternative treatments? Am I just giving the Lyme more time to worm its way further into my system?

That has been a crucial but an unanswerable question. People argue passionately on either side of it, but it ultimately seems to me that no one has enough knowledge to make an absolutely clear case either way.

Ultimately my decision has been driven by several factors.

I started my treatment with thirty days of antibiotics. Although the reason for their inefficacy is up for grabs, the fact is that I have given them at least a partial shot.
As I’ve discussed above, antibiotics come with significant risks. If there were an alternative that worked, it would simply be sensible to try it, to start with the least invasive, least risky alternative.
I trust my naturopath. Although it’s not easy to know why we trust the people we do, I believe that it goes back to those attachment dynamics that I was describing earlier. She seemed from the beginning to possess a healthy balance between her capacity to feel concern and care for me, and her understanding of the realistic limits of her own abilities. On the first day I met with her she told me that if she couldn’t get results for me, she’d refer me to the physician she’d trained with. From that statement alone, I knew that I could work with her.
Once I’ve started with a treatment, I want to give it enough time to actually work. With the Chinese herbs, that meant sticking with them at least a few months.

And there’s one other thing, which is less rational: I’m afraid of antibiotics. I’m especially afraid of the heavy IV antibiotics that are commonly prescribed in various combinations to treat chronic Lyme.

This fear is directly tied to my personal history. Because when people describe the experience of taking these drugs, it sounds to me like they’re going through chemotherapy. And I remember all too well what it was like to go through radiation treatment when I had testicular cancer in my twenties. I remember the dreadful weeks in which I felt barely alive. That’s what my fear of antibiotics is really about. It reminds me too much of my cancer.

I understand that in order to kill certain bugs, you have to introduce substances into your body that will hurt a lot of other things as well. And yes, I know that antibiotics can and need to be complimented with a regime of probiotics and other supportive supplements. Still, I’m afraid of what such a treatment will mean for my functioning. Because so far, even though I’ve felt awful a lot of the time, I’ve still been able to function reasonably well. I’ve continued to see clients, I’ve been able to teach and to promote my book and to maintain this blog. I’ve been lucky. Although I don’t do any of these things with as much energy as I’d like, I continue to move forward with my life.

Why I’m making a change now

In spite of all of this, I’ve realized that the time has come to make a change.

While I’ve had a general sense over the past month or so that I needed to make a change, the thing that pushed me over that line was the development of a disturbing new symptom. Several weeks I woke up in the night with a strange feeling in the index finger of my right hand. When I bent the finger, I found that not only did it hurt but I couldn’t easily unbend it. Rather than moving fluidly into a straightened position it would snap suddenly back, with a sensation that felt a bit like the finger was breaking.

This seemed completely bizarre to me, but it turns out that it’s a well-known condition called trigger finger. And when I asked other Lyme patients about it, it was clear that this is not at all an uncommon in people with Lyme. It’s associated with Rheumatoid Arthritis, and arthritis is a hallmark symptom of Lyme. I’ve had plenty of joint pain over the past year. While it’s annoying and uncomfortable, it hasn’t impaired me in any major way. But the idea of losing capacity in my hands alarms me tremendously. From being able to type to being able to play piano…the potential losses really scare me.

I hoped that it would be a transient symptom, but it’s stayed with me and it’s getting worse. It mostly comes on during the night, but I’ve started to feel the pain during the day as well. It’s worse in my right hand index finger than anywhere else, but it’s in my other fingers as well, and in both hands.

This development felt like the signal I needed. It confirmed for me that things really were growing worse, that the treatment I was receiving really wasn’t arresting the disease.

I steeled myself before my last appointment with my naturopath, at which I was going to deliver this news. I said it simply: “this isn’t working.” She didn’t bat an eye. She picked up the phone right there and called the clinic in California.

In the several weeks since then, much of my life has been taken up with working out the arrangements for this shift in my treatment – scheduling an appointment, figuring out the care of my sons while I travel to California and figuring out for sure whether this is the direction I should take.

In sorting all of this out I’ve been talking with a number of other people who’ve been living with Chronic Lyme, many of them for much longer than I have. One person said something that was particularly helpful to me in this regard. She said that it seemed like many people with Lyme reach certain points over the course of their illness at which they need to change doctors. Not necessarily because they’re getting inappropriate care, but because not every practitioner knows all there is to know about Lyme. An occasional careful change of doctor, she said, is a sign that a person with Lyme is managing their care well.

I don’t know if others would agree with that sentiment, but it feels profoundly right to me.

A final note: the return of the diagnostic dilemma

So where do things go from here?

Much remains to be seen. My appointment is in early February. I’m assuming, although I could be wrong, that I’ll be put on some combination of antibiotics, possibly IV administered. I am preparing myself for this, trying to push through my anxiety and preparing myself to learn what I need to learn about whatever drugs I’m given. I will coordinate whatever treatment I am prescribed with my doctor here.

If the treatment is as hard on me as I anticipate, I’ll probably have to do some rearranging of my life. I may have to stop seeing clients for a little while. I’m not sure how it will affect my teaching.

But I’m ready to take this the step I know it’s what I need to do. And one of the major reasons I know I need to take this step is that after all this time I am still trying to confirm my diagnosis.

I really hate to say that. But it’s true.

When I finally received the Lyme diagnosis, after two agonizing years of searching, a part of me let go and settled in. I wanted that diagnosis to be definitive. I needed to be able to take a break from the stress of not-knowing what was wrong with me.

This was in spite of the fact that I know better. I know that diagnosis is always an on-going process, and that latching onto a particular diagnosis can blind you to other factors, or other conditions, that might be involved.

My naturopath drove this point home when she made the referral.

“They’ll probably put you on antibiotics,” she said. “And if that doesn’t work for you then we’ll have to consider the possibility that what we’re dealing with isn’t Lyme.”

That statement frankly shocked me. Not Lyme? I hadn’t really let myself consider that as a possibility. Given the controversial nature of chronic Lyme, I would get occasional flickers of doubt. But I just sort of pushed them out of mind. Because I needed to believe that I knew what was wrong.

So in certain ways I now find myself back where I was when I began writing the Being Undiagnosable series. Back to the same set of diagnostic dilemmas that I outlined in that initial post, which all come down to the same question: how do I really know for sure what is wrong with me?

Don’t get me wrong. I still think that Lyme is what I’ve got. It’s the simplest and most logical explanation for the pattern of symptoms I continue to experience.

But I’m also allowing myself to keep the question open. As a diagnostician myself, I know that it’s the right thing to do. As a result my next round of treatment, whatever it is, will be more than simply treatment. It will be diagnostic test which we will use as we continue to try to answer the riddle that my symptoms continue to pose.

I’ll let you know what I discover in the next update.

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

How To Be Sick

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Jan 042011

One day Toni Bernhard got sick and she never got better.

The illness she contracted first reduced then eliminated her capacity to work, to travel, and eventually to do most of the things that had previously defined her life. Activity of any sort – even a brief visit with family members – depleted her so much that it would take her days to recover. Her life became confined almost entirely to her bed.

That’s how it is with chronic illness. One moment you’re going along living your life, the next moment something is wrong. At first you don’t think of it as a life-transforming occurrence. You assume that your life will return soon enough to the way it was before. But instead you continue not getting better. The cognitive awareness that the course of your life has been altered occurs over months or years, as your symptoms persist or worsen and you spend more and more money going to doctors in search of a diagnosis that will explain what’s going on, in search of a treatment that will heal you.

Sometimes a diagnosis comes, sometimes it doesn’t. Sometimes a treatment exists, other times it doesn’t. Maybe you will get better, maybe you won’t. In far too many cases, you are compelled over time to accept, first, that you may never have a good understanding of what is wrong with you, and second, that your life is now defined by your illness. You try to figure out a way to hold this deep uncertainty. You struggle to know whether to fight or to accept the new limitations on your life. You try not to let yourself hope too hard…but you also try not to let yourself abandon hope.

The central question of your life becomes: how do you hold all of this ambiguity and uncertainty and loss in mind, without going mad?

That is precisely the question that Toni Bernhard addresses in How to be Sick.

Bernhard has written this beautiful book (which in form and style resembles in many ways the work of other Buddhist authors like Pema Chodron and Thich Naht Hanh), with the wisdom and clarity that come from having faced unimaginable difficulties with a powerful intellect and a humble spirit. The result is that she is able to articulate deep truths with an elegant lucidity.

The book opens with a brief recounting of the story of how Bernhard became, and then remained ill, after contracting a chronic-fatigue type illness which remains largely undefined and untreatable. Powerful though this story is, it isn’t the primary focus of the book. Rather, it’s the backdrop against which Bernhard illustrates the Buddhist techniques and principles which she has learned to use to transform her experience of illness.

This is an eminently graceful book, at once simple and profound, which will be extremely valuable to anyone who suffers with chronic illness. But to be clear: although the techniques which Bernhard describes here are based in Buddhist teachings, you don’t in any way need to be a practicing Buddhist to make use of them. Like all Buddhist principles, they are essentially psychological in nature. In fact, they are the same sorts of techniques that I use of in my psychotherapy practice to help people cope with difficult situations that are out of their control.

If I could distill the message of the book down to a single sentence it would be this: though we must inevitably suffer through the physical ills and limitations of our bodies, we don’t need to add mental suffering on top of our physical pain. In fact, we have the power to define for ourselves what attitude we take toward our own experience. Even as our bodies suffer, we can find mental liberation.

This powerful concept extends far beyond the experience of illness. The techniques Bernhard describes here are useful for any number of ordinary situations. How do we react when we’re stuck in a traffic jam? What do we tell ourselves when we succumb to temptation and over-eat or drink too much? How do we think about ourselves when we experience anger toward someone we love?

The techniques in How to be Sick can be usefully applied to any of these situations. But they have special relevance to the experience of chronic illness.

To give just one example from the many in the book, Berhnard describes a simple practice aimed at helping us dis-identify with our illness. She relates the story of a teacher named Munindra-ji who was travelling to visit a sacred Buddhist site in India. Stuck for hours in a hot train station without food or bathrooms, his students became worried about him. But when asked if he was all right, he replied: “There is heat here, but I am not hot. There is hunger here, but I am not hungry. There is irritation here, but I am not irritated.”

The simple beauty of this statement is piercing and poignant. So much suffering arises out of our rigid identification with our physical state. We believe (usually without realizing that we are doing so) that we are our body.

Bernhard takes this simple practice and applies it to her experience of illness. She tries saying to herself: “There is sickness here, but I am not sick.”

With those words, our state of mind can start to change. From those words, a series of questions emerge.

“Who am I?” Bernhard asks herself. “What is Toni Bernhard? Is Toni Bernhard a solid physical and mental entity with an inherent self-existence or is Toni Bernhard a label attached to an ever-changing constellation of qualities?”

Asking this question opens up space in our minds to challenge the seemingly obvious bond between our physical experience and our definition of self. That this association can be challenged is a truly radical concept.

That phrase – “there is sickness here, but I am not sick” – is one that I have been saying to myself often since reading this book. Because, as readers of this blog will understand, I have been drawn to this book as the result of my own struggle with chronic illness.

For me it began several years ago with some subtle shifts in my strength and energy, which evolved into a puzzling and frightening set of symptoms which I spent two years trying unsuccessfully to get diagnosed. This past summer, just as I gave up hope of getting an answer and resigned myself to accepting that I might never know what was wrong with me, I received a diagnosis of Lyme Disease.

That diagnosis gave me some answers while simultaneously giving me a new set of ambiguities and uncertainties to struggle with. Though I undoubtedly have it, the very existence of chronic Lyme disease is hotly debated by medical professionals. This makes it difficult at times to simply relax into a definition of my condition. Further, the treatments for chronic Lyme are both controversial and inconsistently effective. To put it simply: no one really knows with certainty what treatment will work for each infected individual. And to put it personally: six months of treatment hasn’t had the slightest impact on my own health.

How do I hold this complex reality in mind? How do I think about my identity as I navigate the series of losses that this disease has imposed upon me?

As it happened, during the period that I was searching for a diagnosis I was also writing a book, The Next Ten Minutes, which contains a series of techniques for weaving mindfulness practices into the habitual routines of everyday life. Much like Toni Bernhard, I was living my life at the intersection of mindfulness and chronic illness.

It was only logical that I should try to find ways to use my own mindfulness practices to cope with my experience of illness and uncertainty. But as my readers will be aware, I am at best an inconsistent Buddhist. I believe deeply in the psychological power of Buddhist practices. I teach them to my clients all the time. I try to incorporate them regularly into my life, but more often than not I am irregular and unsystematic in my practice.

Clearly I needed something more than my own advice. I needed a better guide.

When I saw the title of Bernhard’s book I understood that she was precisely the guide I needed at this point in my life. I knew this with certainty even before I knew what was actually inside her book,

I believe that words have great power. I believe that holding certain simple phrases in mind can significantly affect our experience. In writing my own book, I hoped that the words The Next Ten Minutes would have this sort of power. The words How to be Sick absolutely work in this way. You cannot hold that phrase in mind without challenging your assumptions about illness. It’s a phrase which deftly tricks us into a self-reflective stance toward those assumptions. They are words which communicate the essential truth within Bernhard’s book: we have the freedom and power to transform the way we think about our experience.

In helping me see this, Toni Bernhard has given me a gift. I sincerely hope that you will be able to experience her gift as well.

My Lyme Disease is Not The IDSA Lyme Disease

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Dec 092010

On 12/8/2010 an article appeared in the Chicago Tribune entitled, Chronic Lyme disease: A dubious diagnosis. The following is my response.

According to the Infectious Diseases Society of America, I can’t possibly have Lyme disease.

That doesn’t change the fact that in the Fall of 2008 my health went to hell. It started with weakness. I was a marathon runner, but suddenly it became difficult to bike up the small hill where I picked up my sons from school. Then I started having muscle twitches and spasms, all over my body, all of the time. Parts of my body started going numb. Other parts were intermittently tingly, or would have sudden shooting pains, like electric shocks running through my muscles. I became heavily fatigued so that most afternoons I needed to spend several hours napping. It became harder to think clearly. I lost thirty pounds in a couple of months, for no clear reason. One winter morning I spent a half hour shoveling snow – something I ordinarily enjoy – when I suddenly went dramatically weak, pale, shaky. It took me several hours to recover.

I made an urgent appointment with my doctor. He was certain it was a cardiovascular episode. I was at the cardiologist’s office the next day, doing a stress echocardiogram. Turned out my heart was in great shape. That wasn’t the problem.

What was the problem? I had no idea. And neither did any of the doctors that I saw over the next two years. Not the first neurologist, not the oncologist, not the gastroenterologist, not the rheumatologist, not the allergist. And not the second neurologist, at the Mayo Clinic.

Mayo was able to tell me that I didn’t have ALS, which was a great relief since that’s what my symptoms most closely resembled. Through doctor visits and many, many tests I was also able to rule out cancer, MS, Parkinson’s, Celiac Disease, Polymyositis, and many other more obscure conditions. Whatever was wrong with me looked at least a little like all of those things, but was clearly something different. Something no one seemed to be able to identify.

Somewhere along the line I even had a test for Lyme disease, the ELISA screening test, which came back negative. Made sense to me at the time. Lyme was the last thing I suspected. For one thing I live in Montana, where popular wisdom has it that Lyme does not exist. For another thing, I didn’t have that classic bullseye rash that you’re supposed to get.

I didn’t know at the time that the ELISA produces many false negatives. And I didn’t know that you can get Lyme without having the classic rash pattern. As a result, I didn’t give much thought to the rash that I actually did have, a month or two before my symptoms started.

In the meantime, my entire life was transformed. I had to stop running and doing any other demanding exercise. Work wore me out so I did as little of it as possible. I was consumed with fear, trying to figure out what the hell was going on with me. And I spent a whole lot of money trying to get an answer.

In the summer of 2010, on the recommendation of a friend, I went to my doctor and asked for a more sophisticated (and much more expensive) test for Lyme – the Western Blot.

According to mainstream medical practices, my doctor had no business ordering that test for me. According to the CDC, if a test comes out negative on the ELISA, you don’t have Lyme. Period.

Funny thing though…the new test came back positive. For Borrelia burgdorferi, the spirochete that causes Lyme disease. And the test results were unequivocal. They met the CDC standards for reporting Lyme.

Finally, I had a diagnosis. Finally I could start treating the symptoms that had already stolen so much of my life away.

Except for one thing.

I couldn’t, according to the IDSA, actually have Lyme disease.

Here’s why. My doctor (who was skeptical that I could possibly have Lyme) was willing to prescribe me a month’s worth of antibiotics – the IDSA recommended treatment for the disease. I filled the prescription and took the medication faithfully. The result: nothing. I might as well have been taking Tic Tacs. My symptoms continued exactly as they had before.

By the logic of the IDSA, if symptoms corresponding with Lyme don’t respond to the recommended treatment, then the disease isn’t Lyme.

Stop for a moment to consider that argument. Imagine the same logic being applied to any other disease. Say, to treatment for cancer. Try to imagine a conversation between a breast cancer patient and her oncologist going like this:

“I’m sorry Ms. Jones., but since you haven’t responded to the chemotherapy I can only conclude that you don’t actually have cancer. It has to be something else.”

And the next line in the conversation would almost inevitably be:

“I suspect that there might be psychological issues involved, so I’m giving you a referral to a therapist.”

The absurdity is self-evident. But this is exactly what Lyme patients are being told every day.

Mis-diagnosis goes both ways.

The Chicago Tribune article conveys the impression that hundreds or even thousands of people are being told that they have Lyme disease when they don’t, that Lyme is being massively over-diagnosed by loony-tune doctors, who then murder their patients by giving them dangerous treatments that they don’t need.

It’s awfully hard to square this accusation with experience of so many people with Lyme, who have spent years going from doctor to doctor, just like I did, who are themselves being mis-diagnosed with everything from arthritis to ALS. Or who are being told that there is nothing wrong with them at all, that their pain and fatigue and cognitive impairments are all in their head.

Non-diagnosis can be just as harmful as a mis-diagnosis.

The truth is that nothing in medicine is as clear as the way IDSA defines Lyme disease. Every illness in the world has variations and subtleties. Every disease manifests itself a little differently in every human being. And every treatment for every illness is variable in its effectiveness.

Except, according to the IDSA, for Lyme.

So, according to the Infectious Diseases Society of America, there’s no way that I can have Lyme disease.

But that doesn’t change the fact that my life has been turned upside down by Lyme. That I continue to experience the same set of ever-shifting symptoms which dramatically limit my life and leave me feel like I’m about to turn 80 rather than 50.

And by comparison with many other people with Lyme, I’ve got it pretty easy. I have some pretty decent days – as long as I get a lot of sleep and don’t work too hard, as long as I don’t try to go running or skiing or to rake leaves or shovel snow or do anything else which will inevitably trigger a reaction.

I’m lucky enough now to have found a doctor who believes that I have Lyme and who is willing to treat it. The treatments haven’t helped much yet, but that’s not surprising. Because the very controversies which the Chicago Tribune describes have paralyzed research into effective Lyme treatment.

The great paradox here is that if we want our doctors to become more adept at diagnosing and treating chronic Lyme, then we have to investigate the experience of those who us who actually have it. If we continue to marginalize patients then it will never be possible to do the research which can truly determine what is and is not an appropriate treatment for the disease.

To put it bluntly: those practitioners who don’t believe in the existence of chronic Lyme are responsible for creating the very problem they are complaining about. Because there’s no way to identify safe diagnostic procedures and treatments without first acknowledging the existence of the disease.

I don’t know of any other disease in which patients are blamed for the failure of their treatment.

And I can’t imagine any other illness about which the argument would be made that ineffective treatment means that the disease doesn’t exist.

Read Other “My Lyme Disease is not the IDSA Lyme Disease” stories:

Ashley

Eric

Molly

Candice

Kim

Alix

Here’s your chance to win a signed copy of The Next Ten Minutes

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Nov 152010

I’m honored to be the featured artist in the Lymenaide Holiday Bazaar. Please consider supporting those with Lyme by visiting the Bazaar. And while you’re there, enter for a chance to win a signed copy of The Next Ten Minutes. The details are below.

Featured Artist

Monday, November 15th
Featured Artist: Andrew Peterson

Lymenaide is proud to introduce this season’s first Holiday Bazaar Featured Artist: Andrew Peterson.

Andrew is a relatively newly diagnosed Lyme patient, but is not stranger to physical pain and hardship. He suffered for two years, saw numerous doctors, and even acquired a tentative diagnosis of ALS before he was diagnosed with late stage Lyme disease.

“I was diagnosed with Lyme in July of this year, after spending two years going from doctor to doctor in search of a diagnosis for all my crazy symptoms. I even wound up at the Mayo Clinic because for awhile it seemed very possible that I had ALS. The specialists all kept telling me that there was nothing wrong with me, even as my symptoms worsened. Like so many other people, I came out negative on the ELISA test and this, in conjunction with the fact that I live in Montana (where Lyme supposedly doesn’t exist) kept any of my doctors from worrying about Lyme. I finally got the Lyme diagnosis when I insisted on getting a Western Blot, which came back positive for borellia. (I’ve written extensively about the search for a diagnosis on my blog, in a series called “Being Undiagnosable.” It’s an experience I know that many Lymies will relate to.) So as best I can figure, I’ve had Lyme for almost two and a half years.”

Yet even through the hardship and debilitation that Andrew has faced, he has remained incredibly positive and admirably motivated. Instead of letting the disease destroy everything that he is and was, he used it as fuel to continue on with his passion and shape who he is today.

“As so many people who face my life with Lyme come to realize, it’s a disease which robs you of the ability to work as hard or as well as you used to be able. I came to an important realization during the course of the past few years, which was that while I may not be able to get as much work done as I used to, I can still move my life forward. I can get a little bit done every day, and that will add up. Looking back on it, I can’t believe that I was able to write and publish a book during this difficult time. But the way I did it was by staying focused on what it was possible for me to do at any given moment. By resting when I needed to rest and working when I was able. The book itself has become a symbol to me that even though Lyme has dramatically altered my life, it does not have complete control.

The other thing that has been very exciting to me is that the realization, as The Next Ten Minutes neared its publication date, that I had the opportunity not just to promote my book, but to use that promotion to advocate for greater Lyme awareness. In interviews and discussions about the book, I have the chance to talk about my experience with Lyme and put a human face to the disease.”

“The Next Ten Minutes” Book Giveaway

What better way to kick off Lymenaide’s series of Holiday Bazaar Featured Artist Giveaways than with such an inspiring book, by an incredible author and fellow lyme survivor.

“The Next Ten Minutes contains a set of simple yet powerful exercises which will transform your state of mind by directing your full awareness to the habits and routines of your everyday life. The seeds of change are embedded within the most ordinary routines of daily life. These exercises will help you see how, when you bring your full attention to these routines, daily life can become an act of meditation.”

To enter to win a signed copy of “The Next Ten Minutes”, please do the following:

1. Comment on “The Next Ten Minutes” bazaar booth, which can be found here. In your comment, please either write an encouraging, motivating, or inspiring message to late stage Lyme battlers, or state how you’ve used a talent or passion of your own to cope with your illness like Andrew Peterson has.

2. Either share the link to this featured artist write-up on your blog, twitter account or facebook page, or make a purchase from one of the booths at the bazaar. In your comment on “The Next Ten Minutes” bazaar booth, please either include the link to where you’ve shared, or a link to the booth that you have purchased from.

3. Include your email address at the end of your comment, so we can contact you if you so happen to win.

Your comment will enter you in a drawing that will take place this Friday, November 20th. The winner will be announced on Lymenaide’s facebook page and will receive an email notification. Andrew Peterson will personally mail the winner a signed copy of his book.

“I believe deeply that this disease does not have to stop us in our tracks. Each of the booths in the Lymenaide holiday bazaar represents a triumph over Lyme. Sometimes it seems like we’re only capable of taking the tiniest steps forward…but that is still progress. We can all find ways to move forward with hope and compassion, for ourselves and for everyone else who suffers from Lyme.” – Andrew Peterson

Enter on Andrew’s booth- http://bit.ly/9i2DSR

Life with Lyme

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Oct 212010

As readers who followed my Being Undiagnosable series will be aware, over the past few months I’ve received three separate diagnoses for the wide-ranging set of symptoms that have been plaguing me over the past few years: arsenic poisoning, adult-onset human growth hormone deficiency, and Lyme Disease.

Since receiving these diagnoses I’ve been trying to make sense of both the causes and treatment options. But with a set of over-lapping syndromes (especially when it includes a disease as protean as Lyme), treatment seems to proceed haltingly. At this point I’m working primarily with a naturopath who has specialized training in Lyme, but I’m still consulting with other specialists as necessary. In this post I’ll give an overview of the treatment so far. My hope is to provide periodic updates like this from time to time.

Arsenic

Arsenic exposure is both the nuttiest and seemingly the simplest of the three diagnoses to sort out. I met with an Occupational Medicine doctor (just when I thought already I’d been to every sort of specialist possible!), who agreed with my suspicion that my arsenic levels were caused by the Chinese herbs I was taking during the second half of last summer. There’s no treatment, she said. Just try to avoid further exposure and let the arsenic flush out of your system. Get tested again in a month or two to confirm.

I just had that follow-up test and I’m waiting for the results. If it continues to show high arsenic levels, I’ll be at a loss as to the source of the exposure and what I need to do about it.

My naturopath has a different take on heavy metals. She’s not so concerned with the levels in my urine as they’re being flushed out. She’s concerned with the amounts of heavy metals that are stored in my body. So she did a challenge test (injecting a chelating agent which draws out the metals), in order to try to identify those levels. The results showed slightly elevated levels of antimony, lead and mercury. Arsenic was not elevated. She wants to give me a couple of IV chelation treatments to try to draw down some of those stored heavy metals, the theory being that my body can fight the Lyme better without agents those in the way. I’m not entirely sure what I think of this approach, but I’m going to trust that she knows what she’s doing.

Endocrinology

While my naturopath recognizes the importance of the Lyme diagnosis, much of her initial focus has been on my endocrine system. The tests results showing human growth hormone deficiency have driven the biggest change in this regard. For the past two months or so I’ve been giving myself nightly injections of human growth hormone. As I’ve described previously, it definitely makes a real difference, especially in my mood. It works like an anti-depressant for me, lifting my mood even when my Lyme symptoms are flaring up.

Since receiving the naturopath’s tests results (which were based on a urine sample) I’ve since learned that my Internist had also recently tested me for HGH levels in my blood, and that those levels were normal. Both physicians acknowledge that this is puzzling. But the bottom line is that I’m feeling better on the HGH. Significantly better. So for now, I’m staying on it.

Of course, human growth hormone is only part of the endocrinological picture. The endocrine system is a set of interactive hormonal reactions, and over the past few months we’ve been struggling to get everything into balance. My thyroid supplement has remained constant. But everything else has been adjusted in one way or another. I had a trial of adrenal support medication before it became clear that my adrenals were fine. I’ve been on then off pregnenolone and progesterone. And I’ve tried various methods of supplementing my testosterone levels.

Testosterone is the real mystery. And it has been for years. I began supplementing it about three and a half years ago, when the decline in my libido and sexual functioning began to reach a distressing level. Since then the levels of testosterone in my blood have been right where they should be. But in spite of this, I haven’t experienced any of the benefits that healthy testosterone levels should bring. Most importantly, my libido and my sexual functioning have continued to be AWOL.

Working with my naturopath I’ve tried changing the method of administration of the cream. We’ve also tried switching to an oral form of the supplement. Without results. Her tests showed that while my testosterone levels appear to be appropriate, my estrogen levels are somewhat elevated. Her working theory now is that the problem is arising because my body is converting too much of my testosterone into estrogen. That’s why my levels are okay but I don’t experience any effect. The answer, she believes, lies in blocking that conversion. So she’s given me a supplement – Miomin, it’s called – which is meant to do that.

I’ve been taking this supplement for about three weeks, and I’m starting to feel like it might be making a bit of a difference. I’m cautious about putting too much faith in this change – I’ve gotten my hopes up too many times in the past – but I’m keeping an open mind.

All in all, the hormone picture is clearer than it had been, and that has been extremely useful in helping me get a clearer picture of what are and what are not my Lyme symptoms. With the endocrine fatigue starting to wash out, my Lyme symptoms are revealing themselves more clearliy.

Lyme

That’s not to suggest that my experience with Lyme has been straight forward. Far from it. As so many other people with chronic Lyme describe, my symptoms tend to be diffuse, erratic, evolving and often seemingly random. Most of these symptoms I’ve described in the past. The aggravating muscle twitches and spasms. The numbness. The fatigue and brain fog. The crazy buzzing sensations beneath the surface of my skin.

Increasingly I’m also experiencing arthritis-like problems. I’ve had sore neck for many months now. At first I’d thought I’d pulled a muscle, but it failed to resolve. This, it turns out, is a common Lyme symptom, arising from borellia’s intrusion into the nervous system. And little by little, the rest of my joints have joined the party. My shoulders, my hips, my wrists, my knees – they can all become incredibly stiff and sore. They’re not always, though. Similarly with my muscles. I get diffuse migrating pain that can show up in any part of my body. At the moment it has landed in my arms. And like the joint issues, the muscle pain comes and goes.

That coming and going, I’ve learned, is also common in Lyme, which tends to move through 30-day cycles. (Which has something to do with the replication cycle of borrelia.) I’ve known about this cycle but haven’t been able to clearly identify it in myself until some of the hormonal problems have been resolved. But for the past few months it’s looked awfully clear. I have two really bad weeks a month, followed by two not-as-bad weeks.

Which is helpful to know.

The bad half of the month is truly rotten. When I’m in that stage I can become pretty non-functional.

The not-as-bad weeks feel like a reprieve. I don’t feel like myself, but I’m not in intense pain.

So far, nothing we’ve tried to address the Lyme with has made any difference at all. I’ve had several rounds of antibiotics. I’ve had antimicrobial IVs and various supplements. Nothing has shifted.

Right now we’re giving a new treatment protocol a try. It’s a treatment advocated by a practitioner of Chinese medicine named Zhang. I’ve read his book, which makes a good case for the use of modern Chinese herbal treatments rather than antibiotics. His arguments make sense, although they’re hard to put into context in the absence of any counter-arguments. At any rate, I’m willing to give it a try. It involves taking a specific set of (not inexpensive) herbal supplements, in conjunction with acupuncture. The plan is to give it a month or two and if it’s not working my naturopath will consult with her colleagues and we’ll talk about a referral to a physician, probably out-of-state, who has more experience than she does treating Lyme with antibiotics.

I’d be happy to avoid subjecting myself to long-term heavy antibiotic treatment. But my hunch is that this is where I’m ultimately heading.

Loose ends

In the meantime, there are a few other things I still need to take care of. I’m scheduled for several new scans. A CT scan of my chest and abdomen to follow up on the one I had a little more than a year ago, which showed some small spots on my lungs, spleen and liver. The presumption is that they won’t have changed in size, which will indicate that they’re not cancerous.

I’ve also scheduled an MRI of my head, to rule out the possibility of a benign pituitary tumor, which is the primary cause of adult-onset human growth hormone deficiency. No one seems to think I’ve got this, but I want to know for sure.

I’ve felt a real heaviness scheduling these tests. I don’t want to go back into those scanning machines. But I’m not going to be able to fully relax about a cancer recurrence until I know that I’m clear. My hope is that these will be the last scans I have to get for a long time.

And there’s one last thing that I really need to do. I need to write a letter to send to the many doctors who have treated me over these past few years, to everyone who was unable to provide me with a diagnosis. I’m struggling with how to write that letter. Because it’s so tempting to be angry, to use it as a way to vent all of my frustration over the unnecessary medical agony that I’ve been through. But I know that while venting might feel good in the moment, it won’t do what I really want…which is to help reduce the likelihood that other people suffering from Lyme will have to wait as long as I did to get a proper diagnosis. Especially people who live outside of the identified Lyme endemic areas.

So that’s where things stand now. I’m going along with my evolving treatment. Trying to move forward with my work and my life. And I’m taking my time trying to compose a calm, sane letter informing the doctors about what it was that they missed as they were studying me.

Read the next installment of Life with Lyme here.

Being Undiagnosable (8)

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Sep 202010

Part 8: Commencement

[In part seven of this series I described the point at which I surrendered any hope of ever obtaining a definitive diagnosis for my symptoms.]

The end

The conclusion to this story is a story unto itself.

It is about finally receiving a diagnosis…although perhaps it would more accurate to describe it as entering into a dance with a diagnostic possibility. Because after more than two years of going to doctors and getting no answers, something shifted. I was about to receive not just one diagnosis, but three.

It’s going to be helpful, I think, to remember the list of diagnostic dilemmas that I described in the first post in this series. In particular, dilemma number five.

How do you determine whether you are dealing with a single syndrome as it evolves over time, or whether are you looking at two or more co-occuring conditions?

A single diagnosis brings focus to your efforts to care for yourself and to heal. Even if it’s a terrible diagnosis. Even if it’s terminal. Receiving multiple simultaneous diagnoses – “co-morbidity” is the medical term – is rather like trying to dance coherently with three or four partners at once. It is an answer from which emerges many more questions.

The culmination of this series was meant to be, to paraphrase the way a friend recently put it, that to be human is in some sense to be undiagnosable. The comforting assumption that everything about our lives can be understood is a helpful illusion that protects us from our anxiety about all the things that we can never fully understand.

The message of this series was to be: living authentically means living with an open awareness of mystery.

Once I had a diagnosis, didn’t that sort of muddy that message?

If receiving a diagnosis removed the all the mysteries, that might be true. But in fact, as I’ll describe, receiving a diagnosis can be almost as confusing as living without one.

The fantasy is that a diagnosis will be an explanation.

But mysteries will remain. Mysteries will always remain.

And so the message is the same.

As I move forward through a new set of struggles, the question is no longer what it means to live without a diagnosis. I’m not entirely sure what that new question will be. I will keep writing about it in this space, but it won’t be part of this series. This post will mark, as they say at high school graduations ceremonies, both the end of one period of my life, and the beginning of something new.

Persist

What made the difference?

It’s a question I always ask my clients when they’ve finally succeeded at making a difficult change in their lives: what did you do differently that made a difference?

The point of the question is twofold. First, it’s meant to anchor positive change by putting a narrative to the process which created it. Second, it’s an inoculation. When we (inevitably) relapse into our old ways, it’s easier to recover if we can remember what it was that helped us get out the first time.

In my case, the answer to that question is unrevealing. I came upon a diagnosis by doing exactly the same things I had been doing all along: going to doctors and insisting on tests. Nothing really changed.

You could, I suppose, argue that it was a matter of persistence. And I find myself tempted to make that into the message here. Keep trying. Never give up. But I’m skeptical of such sentiment. I don’t believe that persistence at a goal is necessarily correlated with achieving that goal.

At any rate, it wasn’t my persistence that led to a diagnosis. I was done with it all. I’d given up hope.

And my doctor had essentially given up as well. In my conversations with him over the past year he began to acknowledge the limits of allopathic medicine when it comes to figuring out what was wrong in certain complex cases.

“There’s a small set of people,” he said, “that we just can’t figure out. And the truth is, we don’t know everything. Sometimes the alternative docs and non-western practitioners can help where we can’t.”

The first time he said it, I felt annoyed. It seemed like he was trying to shake loose of me and my problems. But when he repeated it last June, it actually sounded right to me. I was ready to let go of traditional medicine. I was looking forward to a trip to Seattle, because I was planning to go back to get more of the Chinese herbs that had helped the summer before. I was considering asking the Hmong healer for more help. I had officially surrendered.

So what exactly did “persistence” have to do with it? If anything, it was my wife’s persistence that finally led to an answer. It was at her urging that I got a test for babesiosis, based on an energetic diagnosis from a healer I had never met.

My doctor pondered that request for a long time. He clearly didn’t believe that I had babesiosis. But he was willing to honor the request.

“If we’re going to do this,” he said, “I want to do it right.” He knew that I’d already had negative results on the standard screening test for Lyme (about which more in a moment), a test which doesn’t look for co-infections to Lyme. He said that he wanted me to get tested at a laboratory that specialized in this. It was, he said, a laboratory that the alternative medicine doctors used. He communicated a certain degree of personal doubt as to the validity of the lab’s work, but he understood what I wanted and he tried to give it to me.

The lab’s name was Igenex. The tests, a Western Blot for Lyme Disease, and a series of other tests for common Lyme co-infections, cost $1,100, upfront and out of pocket. I bit the bullet and paid for it. My doctor also ordered another huge round of blood tests. It was, he said, the largest number of blood tests he’d ever ordered for someone at a single time.

I asked him for something else at that visit. At my wife’s suggestion, I said I wanted a trial of antibiotics. We’d been thinking about this and we realized that if I did have a tick-borne illness, then antibiotics would be the treatment. And if what I had wasn’t tick-borne, we thought, then maybe whatever I did have would respond to antibiotics. We were fishing, but at that point the risks of taking a month’s worth of antibiotics seemed small in comparison to the hope that they might help.

He agreed to prescribe 30 days of Doxycycline – a prescription which, I was soon to understand, came with a certain degree of professional risk.

I went on my way. I had my blood drawn and I started taking the antibiotics. I wasn’t expecting anything to come of it. It would be awhile before we got all the test results. I took my boys to Seattle. I went back to the Chinese pharmacy, where, to my amazement, the doctor there was able to look up his records from my visit the year before. He felt my pulses, asked some questions and wrote out a new prescription. The previous prescription had a lot of bark in it. This one had more leaves. He also sold me a very expensive medicine that came in a red and gold metal tin. It was a small ball that looked a little like a tiny chocolate truffle. But tasted like tar. I was to take half of it that night, half the next night. Then I was to wait a week and take another.

That night I let it dissolve in my mouth. It was like swallowing turpentine.

I made my way through the trial of antibiotics. Nothing changed. That seemed to prove that whatever I had wasn’t tick-borne.

But when we got back from Seattle a lab result sheet from my doctor was waiting in the mail.

It said simply: “Positive for Lyme. Please call.”

Lyme

I stared at that paper for a long, long time. Internally I found myself struggling between disbelief, hope and fear. I knew next to nothing about Lyme at that point. Because I’d previously tested negative I hadn’t researched it at all. What I’d knew, or assumed, was that Lyme was a primarily Northeastern phenomenon. Aside from a winter on Cape Cod eighteen years ago, I hadn’t spent time in any of the areas that were endemic for Lyme. It didn’t make sense that I’d contract it in Montana. In fact, people I knew said that Lyme didn’t exist in Montana. I looked up the CDC statistics on Lyme Disease by state. Montana hadn’t had a single case until 2006, when they’d recorded one. In 2007 there were four. Six in 2008 and three in 2009.

If my diagnosis was accurate, it would apparently make me case number fifteen.

When I met with the doctor he expressed his skepticism about the results of the test he had ordered.

“I’m not sure what to tell you,” he said. “According to this lab you have Lyme, but you based on the CDC criteria it’s not definitive.”

I didn’t know it yet, but I had just stumbled into one of the craziest medical controversies in recent years. The definition of the disease, the process for diagnosing it and the standard of practice for treating it are all matters of fierce debate between different groups of physicians.

And the most fiercely contested aspect of all is the existence of Chronic Lyme Disease.

If Lyme disease is discovered and treated immediately, it’s a pretty curable condition. In many cases early diagnosis is made easier by the appearance of a signature “bullseye” rash at the site of a tick bite. If you live in an endemic area and you get that rash, your doctor will give you a month’s worth of antibiotics and you should recover nicely.

The problem is that not everyone gets that rash. Some argue that less than half of those who are infected get it. And an even bigger problem is that the same standard of treatment doesn’t seem to apply to those whose infection doesn’t get treated for months or years after the bite.

I am a case in point. At the time of receiving the diagnosis I was just about finished with a month-long regimen of Doxycycline, which might as well have been sugar pills for all the effect that they had on me.

The bug that causes Lyme is called a spirochete. It’s the same type of organism that causes Syphilis. Once the spirochete that causes Lyme has established a foothold in your bloodstream, it’s extremely devious. It can burrow into your cells to hide from the antigens which fight it. It changes the nature of the proteins on its surface in order to avoid detection. It even seems to be able to encase itself in a cyst in order to evade antibiotics, then to re-emerge once they’re gone. Over time, it can find its way into all of the organs of the body. In particular, it can invade the nervous system, giving rise to a host of neurologic symptoms like fasciculations, parasthesias (numbness, buzzing and tingling sensations), neck and other nerve pain, and cognitive fog. This set of symptoms is common enough that it has its own name: Neurological Lyme.

As it happens, we have a good friend here in Missoula who is a biochemist, whose principal field of study is the spirochete which causes Lyme Disease, called borrelia burdorferi.

When I told this friend about my diagnosis, he expressed skepticism. In his view, it wasn’t possible that I had contracted Lyme Disease here in Montana. The tick that spreads it, he said, doesn’t exist here.

But there had been a strange series of cases here which strongly resembled Lyme, down to the bullseye rash following a tick bite.

“We’ve told people, ‘We don’t know what you have, but we know what you don’t have, and that’s Lyme disease,’ ” state epidemiologist Todd Damrow has said of these cases.

So is this what it was going to come down to? I was finally going to get a diagnosis, but no one was going to believe that it was real?

I wasn’t sure what to think. All I knew for sure was that my test was positive, and that the diagnosis made sense in relation to my symptoms. If I had Lyme, I’d probably had it for at least two years. Which meant that if I had Lyme I probably had Chronic Lyme, especially since a round of antibiotics hadn’t touched it. But whether or not I had Chronic Lyme depended on which physicians you were listening to.

There’s no question that people whose Lyme Disease goes undetected and untreated for a long time struggle with evolving and debilitating symptoms. And I want to say that no one would argue that such people aren’t sick. But that’s not not entirely true. One common explanation that mainstream physicians give for those who are suffering from chronic Lyme is that their symptoms are psychiatric in nature. In other words, they’re not sick at all. They just think they are.

Remember diagnostic dilemma number two: how do you distinguish between psychological and physical causes of an illness?

It’s a complex issue, because people who have been sick with a chronic illness do experience cognitive decline. Their brains are fogged. They’re cranky, and they’re angry. As I have described previously, the longer you live in this condition, the more you start to look…well, crazy.

There’s another debate as well. Mainstream physicians and researchers believe that thirty days on antibiotics cures Lyme. If you accept this premise, and you also acknowledge that someone who has been previously diagnosed with Lyme is still sick…then how do you explain their illness? The argument they make is that in these patients the Lyme has triggered another, as yet unidentified autoimmune disorder. They don’t have Lyme, they have an “unidentified Lyme-induced disorder.”

These physicians, backed by the CDC, are strongly against the use of long-term antibiotics which most “Lyme literate” doctors (LLMDs) see as the only way to fully cure someone of the disease. In fact, doctors who prescribe long-term antibiotics are at risk of receiving severe professional censure.

All of this led me to be unsure about my own diagnosis. Could it be a false positive?

I felt like I’d wandered into an Alice in Wonderland riddle: When is a diagnosis not a diagnosis?

When it’s Lyme Disease.

From testing to treatment

Diagnostic testing for Lyme is a big part of the problem. The CDC standard of practice for diagnosing Lyme Disease is to give a screening test, an “enzyme-linked immunosorbant serum assay” or ELISA test. If a patient comes out positive on that test, then a more sophisticated test, the Western Blot is used to confirm the diagnosis. The problem is that the ELISA test (that’s the one that had come out negative for me before) is notoriously inaccurate, giving both false positive and false negatives. Some studies have shown it to be accurate less than fifty percent of the time.

And if it comes out negative, generally you’re stuck.

The Western Blot is a much more sophisticated and complex test. It separates the different antibodies that your body produces in response to specific proteins on the spirochete, which are separated into “bands” according to weight. The test is positive or negative for Lyme depending on how many of these individual bands are positive.

But there are many controversies about this test as well. For one thing, the strict CDC standard for a positive Lyme test requires a much higher standard than many LLMDs believe is reasonable.

This is further complicated by the fact that borrelia burgdorferi is inconsistently visible to even the best tests available. There are times in its life cycle when it is undetectable. Long-term patients with Lyme not uncommonly have a series of tests on which they are sometimes negative, sometimes positive, with varying degrees of confirmation.

Regardless of all of this, my test was clearly positive. When I learned how to read the results, I realized that my doctor had actually been wrong. My results were unequivocally positive even by CDC standards.

So the diagnosis stood. I really did have Lyme Disease.

I began educating myself about the controversies surrounding diagnosis and testing and treatment, and especially about the experience of those who had been suffering from Lyme for extended periods of time. I read Cure Unknown, an exceptional book on the subject by Pamela Weintraub, who is both a journalist covering scientific issues and a victim of Lyme Disease herself.

I began mapping my symptoms over the past two years to the symptoms for Lyme Disease. They include:

Neck pain and stiffness
Backache, back pain, sciatica
Muscle fasciculations
Muscle pains or cramps (which “migrate” through the body)
Burning, shooting or stabbing pain
Extreme fatigue/malaise/lethargy
Numbness and tingling
Lightheadedness
Brain fog
Confusion, difficulty in thinking
Difficulty with concentration or reading
Loss of sex drive,
Sexual dysfunction
Taste abnormalities
Unexplained weight gain or loss

Check. Check. Check. It added up. Lyme seemed to provide an explanation for all of the symptoms I’d been experiencing. Possibly even including the rash. As I described above, the earliest symptom of Lyme is often the “bullseye” rash. I thought back to that rash I had in the summer of 2008. I don’t believe it had that the classic characteristics. But it was strange. And I would give anything now to have a photograph of it.

So there was an answer. But it opened up new questions. If I had Lyme, when did I contract it? And where? And which of my symptoms did it account for?

Because of course I’d been having hormonal problems and sciatic pain even before the rash. They would seem to be unrelated to the Lyme. But for that matter, I didn’t know that the rash itself was related to Lyme. Was it possible that I contracted Lyme years ago but only started showing symptoms in the past two to three years? And what did it mean that I had experienced no effect after a month of antibiotics? According to the CDC, I should cured.

I doubt that any of these questions are ultimately answerable. And they were about to be complicated by several new discoveries.

In the meantime, I had to figure out how to proceed with treatment. My doctor, to his great credit, acknowledged his uncertainty about the whole matter and offered me several options. I could work with him and he would do the best he could. Or I could try to find another MD who had more experience with Lyme. Or (and this was an extraordinary thing for an allopathic physician to say), I could seek out a naturopath to work with.

Although I have been wary of naturopaths in the past, I chose the latter option. There was a naturopath in Missoula who had specific training in Lyme from the International Lyme and Associated Diseases Society (ILADS). I called her up and scheduled and appointment.

Heavy metal

But there was one more test to do first. On that exhaustive round of blood tests, the arsenic level in my blood was a little high. That was odd. To verify or disconfirm this result, I needed to do a 24-hour urine draw, to test specifically for arsenic. A week or so later I got a call from my doctor. I was in fact positive for arsenic. The levels in my urine should have been below 50 micrograms. Mine was 117.

Now this really was starting to sound like a House episode. A truly bizarre finding that made no sense. Did it have any relation to the Lyme diagnosis? That seemed unlikely. But how could I tell?

It was all the more confusing because symptoms of arsenic poisoning – neurological effects, sexual dysfunction, metallic taste – overlapped with so many of my symptoms.

It’s well-known that comparatively high amounts of arsenic are socked away in Montana’s rivers and soil, the aftermath of years of less-than-safe mining practices. But I hadn’t done anything in particular that would have created this level of exposure to it. I didn’t work in an industry where exposure was a risk. We were on city water, which was tested regularly.

It just didn’t make sense.

People started teasing me that my wife must be poisoning me.

But then I remembered those Chinese herbs. Especially that tar ball. I took that medicine on faith. I really had no idea what was in it. Could that tar ball have contained arsenic?

It seemed possible.

Full Circle

When this all started, before my symptoms were alarming (when they were merely distressing), I understood that something was off with my hormones. As I described in the first post in this series, the awareness that something was wrong began with a loss of sexual drive and functioning. I treated my testosterone and thyroid and got their levels to where they should be. But it changed very little. And that had remained a mystery to me over these two years. If my levels were right, why didn’t I feel better?

When I look at my hormone problems in relation to my Lyme diagnosis, there were several possible relationships. One was that my hormone problems predated Lyme and had nothing to do with it except that they made it harder for my body to fight off the spirochete. Another was that Lyme predated and was the source of the hormonal problems.

Or perhaps there was some way in which both of these possibilities could be true.

It’s a question that is as important as it is unanswerable.

Back to diagnostic dilemma number one: when does an illness begin?

In fact, my hormonal issues could date back to my testicular cancer 25 years before. Or even earlier. I’m not convinced that these issues haven’t been a lifelong problem for me.

Whatever the case, when I met with the naturopath it was clear that in addition to the Lyme and the heavy metal exposure, she was going to look aggressively at my hormones. She ordered a six-hour urine draw for a comprehensive endocrine panel. Another $400, up front.

“I’m going to include human growth hormone in this,” she said. “I don’t always, and it’s more expensive, but in your case I think it’s worth checking.”

She started me on a series of anti-microbial medications and IV treatments to address the Lyme. None of it seemed to affect me at all. I still felt, in cyclically varying degrees, like shit.

The hormone tests came back. Or most of them did. The human growth hormone results were delayed. The naturopath read them the way a psychic might read tea leaves. My estrogen levels were a little high. My adrenals looked fine. My testosterone, which I was already supplementing, seemed good. So did my thyroid levels, also supplemented.

What did all that mean?

The endocrine system is like a set of interlocking homeostatic mechanisms. You have to think dialectically to make sense of it. An elevation in one level corresponds with a deficiency in another, in a set of complex relationships. We tried a series of changes. A new thyroid formula. Changing the application method on my testosterone cream. Adrenal support. Pregnenelon. Progesterone.

None of it seemed to change anything.

Then the rest of my test came back. It turned out that the reason the human growth hormone results had been delayed was that when they’d run it the first time they hadn’t found any in me. That was odd enough that they ran the test a second time to make sure it wasn’t an error.

Again, nothing.

It turned out that I had a serious HGH deficiency.

“It doesn’t mean your body isn’t making any,” the naturopath said. “but it’s making so little that by the time it gets to your urine there’s none left.”

It was, she said, a very important finding. She thought it might be the key to everything.

“Your immune system is so depressed that it can’t even muster a response to the Lyme.”

She wanted to get my hormones in balance before she continued trying to treat the Lyme. This made me a little uneasy. But, she said, if we don’t do that she would wind up treating a hormone deficiency “as if” it were Lyme.

I started researching human growth hormone, which was difficult to do given the performance-enhancement stories and anti-aging websites that drowned out everything else in the search results. I learned that the main cause of HGH deficiency in adults is a benign pituitary tumor, called an adenoma. Did I have one? And if so, what did that mean?

Another MRI is in my future to check that out.

The naturopath said the goal of her treatment was going to be to get my own body to start creating adequate HGH again. But my reading was telling me that this might not be too likely.

The treatment for human growth hormone deficiency is pretty straightforward: you give yourself daily injections of a supplement. It’s expensive – about $500 a month – and of course my catastrophic health insurance wouldn’t cover any of it. But I had to try.

You can’t help but feel, when you start giving yourself injections, that you’ve crossed a certain line. I know that this is a normal thing for diabetics, but as I started to give myself my nightly dose of HGH, the main images in my mind were not diabetics but junkies.

Four or five days after I started the injections, I began to feel a difference. It didn’t feel like a change to what I have now started differentiating as my “Lyme symptoms.” It was something else. The biggest change was in my mood. This was the best anti-depressant I’d ever taken. I’d tried numerous anti-depressants in various doses and combinations over the years, and none of them had made a dramatic difference. But with the HGH it was like a cloud was lifting. I felt lighter and more connected with those around me. I felt more hopeful. I felt like part of the world again.

It didn’t help too much with the cognitive fog, but it did seem to give me a bit of an energy boost. And there was this global physical change that is very hard to describe. I feel more fluidity in my movement. It is as if my entire body has been lubricated.

As I write these words, I’ve been on the HGH for about three weeks. And last week when I met with my naturopath I all but begged her not to take me off of this. Not that she was about to, but now that I’ve found something that has started to make me feel better, I’m desperate to hold onto it.

Unanswered questions

I wish that I could let this story settle into an easy ending.

But I’d be lying if I told you that I feel completely comfortable with this cluster of diagnoses. Diagnosis, I have come to understand, is largely a matter of belief.

Here’s what I believe at this moment.

I believe that I have a fairly long-standing and untreated case of Lyme Disease.

I’m fairly certain that my elevated arsenic level was a red herring, an aberration created by the Chinese herbs. I’m hopeful that when I re-test those levels, they’ll be normal. If they’re not, I have no idea what I’ll do.

And I believe that my endocrine system has been severely depleted, probably for a very long time, perhaps even for my entire life. I trust that supplementing with HGH will help everything get back into the balance, although I’m certain that there will be further fine-tuning to do as well, especially with testosterone. Because although my levels seem right, I still feel depleted. And my libido is still on the lam.

Am I convinced that I don’t have ALS?

Absolutely.

Am I fully confident that I don’t have MS?

No.

Do I trust that a recurrence of cancer has been completely ruled out?

Not at all.

How would I describe my health at this moment?

Although the HGH is helping, I still feel fragile. The Lyme symptoms are all still present, in varying degrees. My whole body often hurts – that “cellular” pain that I’ve described previously. I can get easily fatigued. My thinking still feels awfully slow. The fasciculations aren’t particularly intense lately, but they haven’t gone away. The buzzing, numbness and other odd sensations continue as before.

It’s all there. At the moment it’s not at its worst. But because of the way these symptoms come and go in cycles, I don’t trust any particular state to last. It’s exceedingly difficult to figure out what is and what isn’t a trend.

And unanswered questions keep coming into my mind.

Why did I lose all that weight last year?

Do I have a pituitary tumor?

Will I be on HGH for the rest of my life?

How long have I had Lyme?

How treatable is my Lyme?

Will I ever experience my sexual self again?

In the end it seems to me that this is as close to a definitive diagnosis as I’m likely to get. And that feels okay. Because what I’ve been coming to terms with through all of this is my relationship to the entire idea of diagnosis. In the process of struggling for a definitive diagnosis, and in surrendering the hope of obtaining one, I found myself, in certain ways, at peace.

In this state of mind I feel the genuine possibility of healing. And that possibility is enough. I am certain that my symptoms and their diagnostic interpretations will continue to evolve. As will my state of mind. That’s to say that even within my diagnoses I will continue to feel the ebb and flow of diagnostic possibilities. Which is another way of saying that in certain ways I will always be undiagnosable.

As we all are.

Note: while this post marks the end of the “Being Undiagnosable” series, you can follow my journey in a new series of posts, titled “Life with Lyme.”

Being Undiagnosable (7)

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Aug 312010

Part 7: Surrender

[In part six of this series I paused to summarize my efforts so far in my quest for a diagnosis.]

Step one

We admitted that we were powerless.

A lot of people who start up in 12-step programs have trouble with the first step. Personally, I’ve always liked it.

Our lives had become unmanageable.

To me has, that has always seemed like simple statement of fact about the human condition. We are, when it comes right down to it, powerless over our unmanageable lives.

That’s not to say that I don’t often resist this truth. Like everyone else, I try to create the illusion that I’m in control of my own life.

But the wiser part of me, the existentialist in me, knows better. This part of me doesn’t believe that our lives are guided by some intrinsically meaningful forces, higher powers that are waiting to be discovered. This part of me understands that the only meaning in our lives is the meaning that we ourselves create.

People often balk at that. The idea that our existence has no meaning seems, on the surface, so negative.

But I actually find it to be a tremendously affirmative statement. Because if our lives do not come with pre-determined meaning, we have this incredible freedom to make meaning from our experience. That freedom is both invigorating and terrifying. Because, of course, along with that freedom comes a sobering responsibility.

Still, I understand that this is not the most popular way of understanding human existence. If you’re even a little bit religious, the idea that life is meaningless is…well, sacrilege. And if you’re in the 12-step world, you think of powerlessness and unmanageability as symptoms of an illness. They’re problems to be resolved, not conditions to be tolerated.

But I would argue, using a bit of Buddhist logic, that much of human suffering is not the result of our powerlessness itself, but rather that it comes as a consequence of hanging on too tightly to the illusion that we are ever other than powerless over our unmanageable lives.

To be clear (as I have said before), I’m not against religion at all. But I am deeply, profoundly agnostic. I’m not against 12-step programs either. Quite the contrary. I refer my clients to them regularly. But personally, I can never truly move on to the second step. For all the reasons I’m describing, that whole higher power thing just doesn’t sit well with me.

So my personal 12-Step program is pared down. It’s a 1-Step program. Just keep taking that first step, over and over again.

I don’t need or expect you to agree with me on this. I’m describing it simply so that you can understand the decision I was about to make for myself with regard to my own search for a diagnosis.

I took the first step. I acknowledged that I was powerless over my own diagnosability. But I needed to figure out where to go from there. Since there was no higher power to “restore me to sanity,” how could I find a way to remain in that powerless state?

I turned to the only true guide I know for dead-end situations and that is Victor Frankl, who describes so powerfully how the only absolute power we ever have is the power to shape our attitude toward our experience.

I began to ask myself: what attitude did I want to take toward my own health? What meaning could I make of it?

Homeostasis

In the Spring of this year, as the anniversary of our trip to Mayo came and went, I was settling into an awareness that there were no more doctors left for me to see. There was not a specialty I could think of that might offer any new or different perspective on my undiagnosed symptoms. It really seemed like I’d reached the end of the line.

Nothing much had changed with regard to my symptoms. They were always evolving, but they’d seemed to reach a sort of homeostasis. They ranged from annoying to worrying to occasionally debilitating, but they weren’t getting significantly better or worse. The muscle spasms had grown somewhat less intense, although they occasionally flared up. The fatigue had improved a little bit after the sleep studies, but I was still subject to intermittent bouts of overwhelming exhaustion. Most things came and went with varying degrees of intensity – the migrating neurologic symptoms, the metallic taste, the waves of “cellular” pain. The cognitive fog was probably the most constant and bothersome symptom. I felt constantly at a slight remove from everyone around me, and most of the time it was just plain hard to think.

So things weren’t great. But they also didn’t seem dire. It seemed likely that I could go on living like this indefinitely.

And I’d grown so tired of going to doctors.

So I began to ask myself: what if this is it? What if the answer is that there is no answer? What if this condition is truly undiagnosable?

I confess that I felt some relief in allowing myself to ask this question. The cycle of hoping for an answer and not getting one had worn me down. It was mentally and physically exhausting. And, more importantly, it kept me focused inward, constantly monitoring my symptoms, which prevented me from being able to direct energy into my work and my relationships the way I wanted to.

So I began, for the first time, to let myself consider a possibility that had seemed unthinkable earlier. Perhaps this is simply the condition of my life from now on.

In the past this admission would have seemed like a weakness. Like I was quitting because things had gotten too hard for me. But the more I considered it, the more it actually seemed like the only sane approach to take. It was a way of changing the terms of my relationship to my own health. Rather than let my symptoms control me, perhaps I could decide for myself how much influence I gave my them over my own self-definition.

I accept

I asked myself what it would take for me to let go of my search for a diagnosis?

I would have to find a way to treat my symptoms with equanimity.

I would have to find a way to re-focus my energy on the future. One of the ways in which my illness had affected my thinking was that it limited my awareness of my own future potential. It had narrowed my vision, kept me from attending well to any long-term goals.

And more than anything, I would have to find a way to take a positive attitude toward my own life. I’d spent so much time wondering about the ways in which my existence might be curtailed…it would be a significant shift to focus instead on what was possible.

I understood the techniques for making this cognitive shift. After all, I taught them to my psychotherapy patients all the time. And I practiced them in my own half-assed but heart-felt meditation practice. It was a matter of mindfully attending to the ways in which I held my symptoms in mind. Trying not to attach to those symptoms as the definition of my entire being. Instead, I could just notice them and let them go.

When I felt a muscle spasm, for instance, what did my mind do with it? I had a choice about how much emphasis I gave it. I could start scanning anxiously for other spasms, reviewing when and where they occurred. I could make spasms the filter through which I understood the world.

Or I could just let it go.

I received some unexpected assistance in this work of shifting my thinking from my weekly yin yoga class. Yin yoga was one of the few things that had actually made me feel better during all of this. It’s a practice which emphasizes the slow stretching of the body’s connective tissues. Most of it is done on the floor. A pose might be nothing more than a simple, forward fold, held for four or five minutes. You try to relax your muscles, to give yourself access to the deeper tissues. It has helped me in ways that seem to me to be beyond words.

At the beginning of one class the instructor had us do a very simple breathing exercise. Breathe in deeply. Then exhale. And at the bottom of the exhale, the pause before the next breath began, say to yourself: “I accept.”

She didn’t give any instructions on how to direct that acceptance. But I felt immediately what it was that I was needing to accept. And breath after breath, as I spoke those silent words to myself, I sunk deeper into the awareness that acceptance was what I needed more than anything. I was on the edge of tears. This is the state of my life, of my body, of my mind. This is my existence. This is what is.

I accept.

The bottleneck

I made a list at the things I wanted to accomplish in the near future.

In addition to everyday household and parental tasks and the work of maintaining my private practice, most of my list involved things I wanted to do to begin promoting my upcoming book. I wanted to put together proposals for presentations I could make at conferences. I wanted to produce a short video. And I had a fantasy of composing music for some or all of the chapters in the book.

All of these things had come to feel overwhelming to me. Before my health had gone south – before, especially, the brain fog had set in – I could have moved through each of these tasks fairly quickly. I would have been able feel the satisfaction of completion. Now I was going to have to learn to take satisfaction in much smaller steps. In order to feel like I was moving forward, I was going to have to look at these things with a much longer time frame.

Because the simple truth was, I didn’t know, day by day, just how much energy and concentration I’d be able to muster. I usually had a few decent hours in the morning, but the afternoons were a total crapshoot. There were often times when I had two or three open hours to work in the afternoon, but when I sat down to do it, my mind simply froze. I would read the same sentence in a book dozens of times without being able to move forward. I would stare at my notebook, unable to conjure a single coherent thought.

In the past I would have been able to power through these blocks. Because of this habit, it took me quite awhile to realize that things had changed. It was exceedingly difficult for me to accept that it was pointless to try to keep trying. But it was true. When I felt like this, the best thing I could do was to lay down and take a nap. That, I slowly came to understand, was what my mind and body were really needing.

I felt it in my psychotherapy practice as well. Mercifully my caseload was very small at this time and limited to the mornings. Because seeing just two clients in a morning pretty much wore me out.

It was, as my wife kept saying to my doctors, as if I was about to turn 70 instead of 50.

The way I experienced it, it was as if my creative energy had once flowed through a broad pipe, but now one end of that pipe had narrowed into a very small funnel. There was only so much I could get through that bottleneck at a time. I had to develop a lot more patience, and also a bit more faith in my own ability to persist at a project that was moving in slow-motion.

Often I’d sit down to start writing (a piece like this, for instance, which I imagined I would post at least a week early than I actually am), and I’d find that my mind simply refused to function. I simply had to accept this limitation. I wasn’t going to finish the piece that day. It would get done when it got done. I wasn’t going to give up on it, but I wasn’t going to push myself to do what wasn’t possible.

Slowly, day by day, I found a way to accept this new reality. I learned to appreciate how much I was actually able to do, over time, in spite of how I felt. And that wasn’t just happy talk. It genuinely felt good.

The more I was able to get myself into this frame of mind, the more I felt relieved not to be spending all my mental energy focused on my health. I was able, with effort, to think of myself less as someone who was sick, and more as a person who was maintaining a small, successful psychotherapy practice, who was composing music and doing everything he could to promote his forthcoming book.

One last test

So there I was.

I was pretty much at peace. I wasn’t happy not to have a diagnosis. I wasn’t happy with the limitations I experienced. But I knew that I could move on with my life. Maybe things would get better. Maybe they’d get worse. Either way, there wasn’t much I could do about it. I had come to accept that I was powerless over my undiagnosability.

And this was where this story was supposed to end.

But then my wife opened another door.

While visiting her sister in upstate New York, she’d met a woman who called herself a healer. This woman offered to try to diagnose my condition through my wife’s energy. My wife agreed and at the end of the session the healer told her that I had babesiosis. I felt weary at the word. I didn’t know what it was, but I felt overwhelmed by the mere idea of starting up again on another fruitless quest to get a diagnosis.

My wife expected me to be skeptical and I was. The arguments spun around in my head. I’d started down this path so many times. How could this possibly be a proper way to diagnose anybody?

But then again, I told myself, if I was open to having chickens sacrificed in my kitchen, I ought to stay open to this as well. I looked up babesiosis and learned that it was a tick-borne infection that commonly co-occurred with Lyme Disease. The symptoms resembled those of Malaria. My symptoms weren’t malarial. And I’d already had a test for Lyme. Upstate New York was Lyme Disease territory, so of course that’s the sort of thing she’d come up with. I’d never heard of anyone with Lyme in Montana. It just seemed sort of wacky.

Still, my wife said, what’s the harm in getting you tested for it?

She was right. What was the harm in that?

[Part eight of this series will describe the unexpected turn of events that began with this "final" test.]

8AJMGFZGKVJ9

Being Undiagnosable (6)

6 Responses »

Aug 252010

Part 6: The Story So Far…

[In part five of this series I discussed traveling to the Mayo Clinic in search of a diagnosis, and I described alternative treatments I explored.]

To sum up

If you watch “House, M.D.,” you’re familiar with those meetings in which the doctors put all patient’s known information on a board, which they then study for hidden patterns. Here’s what the board looked like for me as I began writing this series.

Doctors and other medical professionals who have examined and treated me

Internist
Endocrinologist
Cardiologist
Oncologist
Gastroenterologist
Neurologist(s)
Physical therapist
Nutritionist
Allergist
Rheumatologist
Sleep specialist

Blood tests performed

Multiple tests over 2+ years, for a variety of conditions, including: hormone functioning (testosterone and thyroid levels), rheumatoid arthritis, Epstein Barr, heavy metals, Lyme Disease (ELISA), Myasthenia Gravis. In addition to tests for specific conditions, a wide range of standard indicators were tested. With the exception of a light elevation in my liver enzymes, probably the result of the statins I take to manage my cholesterol, all of these tests came out negative.

Other tests performed

Stress echochardiogram
Esophagogastroduodenoscopy (EGD)
Ultrasound of thyroid
CAT scan – abdominal
MRI scans – brain, cervical spine, lumbar spine
Electromyography (EMG) and nerve conduction test (2)
Autonomic reflex scan (QSART)
Thermoregulatory sweat test
Nocurnal oxymetry
Nocturnal polysomnogram (2)

Results of these tests

A few small spots showed up on the CAT scan, almost certainly benign but worth tracking due to my cancer history.
Mild disk degeneration showed up on the MRI.
Mild carpal tunnel syndrome showed up on the EMGs.
Some autonomic neuropathy in my feet was found in the thermoregulatory sweat test.
Sleep studies (not discussed in prior posts) showed a low level of sleep apnea – hypopnea – which has been effectively treated with a sub-clinical dose of amitriptyline.

A few of the illnesses and conditions that seemed to have been ruled out by these tests

ALS, MS, Parkinson’s, Multiple Myeloma, Celiac Disease, Lyme Disease, heavy metal poisoning, Chronic Inflammatory Demyelinating Polyneuropathy, Rheumatoid Arthritis, HIV/AIDS, a recurrence of Cancer, including Paraneoplastic Syndrome, Autonomic Nervous System disorders including Postural Orthostatic Tachycardia Syndrome, Cardiac disorders of any nature, Polymyositis, Amyloidosis, Whipple’s Disease, Giardia.

Treatment suggested by the medical professionals after reviewing these tests

Physical therapy
Psychotherapy

Alternative treatments I’ve explored

Acupuncture
Chinese herbs
Therapeutic massage (Rosen method)
Yin yoga.
Hmong shamanic healing ceremony

Symptoms

As of mid-summer, 2010. Many of these have been describe in previous posts, some of them are new or have evolved.

Perceived muscle weakness
Exercise intolerance
Orthostatic hypotension Occasional intense light-headedness when rising from a sitting or crouching position.
Episodes that mimic hypoglycemia Which include but go beyond the light-headedness described above.
Fatigue fluctuating in intensity but nearly always present to some degree, and intermittently crushing. It’s usually pretty bad in the afternoon (so I try to get as much work as I can done in the mornings). I find that I do reasonably well when I get ten hours of sleep (less than that and all the other symptoms get worse), and/or when I have the opportunity to nap in the afternoon.
Pain Migratory and fluctuating in intensity. It is most commonly a diffuse sort of pain which I can only describe as “cellular” – meaning that it feels like it’s an accumulation of pain emanating from all of my cells. So rather than being focused in one part of my body, it feels more like a cloud of pain that engulfs me. It’s a bit like the ache you get with the flu, but it’s not even as focused as that. In addition to this diffuse, cellular pain, I also get more acute, focused but migratory pain in my joints and muscles. Sometimes it feels clearly like nerve pain – shooting, electrical shocks that hit the tops of my feet or my thighs or my upper arms. Other times it’s just a regular old pain, like the ache you feel after having been punched.
Neck pain I separate this from the rest of the pain because it is a recent development and because it has a different quality. I first noticed it late in the Spring during my yoga class. I thought that I had strained a muscle in my neck. But it hasn’t eased off, the way a pulled muscle does. Rather, it’s gotten worse.
Sexual dysfunction My earliest symptom has remained, although my understanding of it has evolved somewhat. Rather than being a circulatory issue, it feels clear to me that the larger issue is that the bottom has dropped out on my libido. While my body is capable of achieving an erection, there’s little or no fuel available with which to kindle or sustain a sexual fire. In other words, it still feels like a hormonal issue. Even though my testosterone and thyroid levels have been supplemented until their blood levels are optimal.
Weight changes From a high of 187 pounds in January of 2009, I reached a low of 157 in June of that year. Since that time I’ve gradually regained much of that weight and I’m currently in the 175-180 range. The changes in my physique have remained, however. The muscles in my arms and legs look different than they used to in ways that are difficult to describe. It’s hard to say whether the muscles are more defined, or the spaces between them are less so. In general, my body seems bonier than it used to be.
Neurologic symptoms These are numerous and often so bizarre that it is difficult to describe them. They include:
- Fasciculations Muscle twitches and spasms. Although they vary in intensity and location, they have been one of the most constant features throughout all of this. Sometimes they’re very intense, other times they’re mild. Sometimes they hammer away at one spot on my body, other times they seem to hit all over the place, randomly. Sometimes they bubble around constantly, other times they’re just sporadic, random blips.
- Numbness, tingling, and buzzing This is a catch-all category for a variety of odd experiences. I have areas on my body – especially the outside of my legs below the knees, and on the tops of my feet – that feel like they have been permanently shot up with novocaine. In addition, I experience varying degrees of tingling numbness in various parts of my body, but especially in my hands and feet. When I lie down, the soles of my feet feel like they’re burning. And I’ve started to experience a distinct “buzzing” feeling which is different from both the fasciculations or the tingling or the shooting nerve pain. It’s localized and it goes off in my body the way a cell phone goes off when it’s set to “vibrate.” It’s a discrete buzz that starts and then stops and then repeats, sometimes for hours. I can get it in the base of my groin. Or in my thigh. Or anywhere.
- Migraine-like aura This is a new one. I’ve only had a true migraine a few times in my life and it’s been years since the last one, but I remember well the unnerving optical sensations that preceded them, the “migraine aura.” Lately I’ve started experiencing that aura again, but without the ensuing headache. It’s like a bright, jagged stimulus hovering in my peripheral vision. It can occur on either side.

Metallic taste Started somewhere near the beginning of 2010. A strong, unpleasant taste in my mouth, usually metallic in nature. It’s not always particularly intense. It seems to come and go in cycles. But it influences me even when it’s not strong. For instance, I can no longer drink red wine. This metallic tastes gives it all a taste more or less like rubbing alcohol.
Cognitive impairment This has probably been the most distressing of all my symptoms, because I rely profoundly on the agility of my mind in my work as a writer, a teacher and a psychotherapist. The cognitive fog that I experience can take many different forms, but I notice it most in the way that it affects the pace at which I can work. I’ve always got a running list of work that I need to do, which might include writing projects, including these blog posts, developing proposals for presentations (such as the one I’ll be doing at the American Counseling Association next year), preparing for teaching (as I’m doing now for the Ethics course I’ll be teaching to counseling students this Fall). It used to be that these tasks sort of flowed by. But these days, the list stays static for long periods of times because my ability to focus clearly and think well has become a bottleneck. It takes a lot longer to get things done. I sit down to read and I simply can’t make my mind absorb the sentence in front of me. I try to write or to compose music and I find my mind to be filled with mud. Days can go by like this. It’s bad when I’m working, but it’s even worse interpersonally. Often during conversations, I feel like the mechanisms linking my thought to my speech are malfunctioning. As a result, a simple conversation can be exhausting to me. Seeing more than a few clients in a morning wipes me out. And presenting before groups, while not impossible, is very challenging, and very exhausting.

Why I don’t want to tell you any of this

What does it mean for you – for anyone – to know these things about me? This is a question I have struggled with throughout these past two years.

Although it might not be evident from this blog, I am by nature an intensely private person. I know that I don’t have much control over the ways in which other people see me, and it’s precisely because of this that I like to have as much influence as possible over the things that I can control.

Mostly this has meant playing my cards very close to my vest.

But being sick and seeking a diagnosis, necessarily puts you in front of the eyes of others. And not just expose the gaze of the medical professionals whom you seek out for help.

Once you’ve been identified as being sick, everyone looks a little more carefully at you. They scan for the illness in you. Even more so when you’re sick without a diagnosis.

This dance between exposure and concealment is even more complicated in my case because my father happened to be a doctor and because he had an intrusive gaze. To make things worse, I grew up in a monolithic religious community, a religious organization which gathered and used personal information against its membership with a Stalinist zeal.

As a result of all of this, I learned some very effective ways to hold parts of myself out of public view.

What I figured out, growing up, was that seeing into the intimate lives of others gave you information about them, and that this information could give you power over them, which could be used in tremendously harmful ways.

As a result, I have lived my life guarding information about myself very carefully. I am constantly monitoring what other people know and don’t know about me. I can’t shut this part of my mind off, even with the people I trust most deeply in the world. Some part of my mind is always keeping track of what they have on me. I am never not aware of this.

(It’s not lost on me that I have chosen a profession in which I am able to experience the extraordinary range of human passion while simultaneously revealing very little about myself. I suspect that many, if not most, of my colleagues share some version of this trait.)

So, I am writing every word of these posts while containing my anxiety that they will in some way be used against me. In the simplest version, my fears are simply that you’ll think of me as someone who is whiny, helpless, unmasculine, weak, deluded, or attention-seeking.

I have worse fears than that, of course.

But for the moment I’ll keep them to myself.

Why I’m telling you anyway

Given all of this, I’ve wondered over the past weeks just why it is that I have felt compelled to tell this story publically. One answer has been that regardless how I imagine myself being perceived by others, this is the simple truth of my experience. Another answer lies in my awareness that being undiagnosable means more than just the accumulation of symptoms and tests and conditions that I’ve described above. On some level, undiagnosability is the human condition. It’s an existential truth: so many of our questions are eternally unanswerable. Finally, I’ve been writing this because of the simple recognition that my experience is not uncommon. There are many people who are desperately seeking a name for their seemingly unnameable suffering. Telling this story doesn’t give that suffering a name, but it does give it a voice.

But there’s something more. Something deeper.

It’s this. The experience of being undiagnosable has changed me. Writing this story is a sort of coming out for me. I’ve worn myself out over the years doing all the work it takes to keep myself so carefully concealed. Somewhere in all of this experience, something has shifted in my personality. That change took place during the period I will describe in the next post, the period in which I abandoned all hope of ever getting an answer. Giving up freed me, in utterly unexpected ways.

[In part seven of this series I will explore what it means to abandon the hope of finding a diagnosis, and how doing was essential for my well-being.]

[In part five of this series I discussed travelling to the Mayo Clinic in search of a diagnosis, and I described alternative treatments I explored.]

To sum up

Doctors and other medical professionals who have examined and treated me

· Internist

· Endocrinologist

· Cardiologist

· Oncologist

· Gastroenterologist

· Neurologist(s)

· Physical therapist

· Nutritionist

· Allergist

· Rheumatologist

· Sleep specialist

Blood tests performed

Other tests performed:

· Stress echochardiogram

· Esophagogastroduodenoscopy (EGD)

· Ultrasound of thyroid

· CAT scan – abdominal

· MRI scans – brain, cervical spine, lumbar spine

· Electromyography (EMG) and nerve conduction test (2)

· Autonomic reflex scan (QSART)

· Thermoregulatory sweat test

· Nocurnal oxymetry

· Nocturnal polysomnogram (2)

Results of these tests

· A few small spots showed up on the CAT scan, almost certainly benign but worth tracking due to my cancer history.

· Mild disk degeneration showed up on the MRI.

· Mild carpal tunnel syndrome showed up on the EMGs.

· Some autonomic neuropathy in my feet was found in the thermoregulatory sweat test.

· Sleep studies (not discussed in prior posts) showed a low level of sleep apnea – hypopnea – which has been effectively treated with a sub-clinical dose of amitriptyline.

A few of the illnesses and conditions that seemed to have been ruled out by these tests

ALS, MS, Parkinson’s, Multiple Myeloma, Celiac Disease, Lyme Disease, heavy metal poisoning, Chronic Inflammatory Demyelinating Polyneuropathy, Rheumatoid Arthritis, HIV/AIDS, a recurrence of Cancer, including Paraneoplastic Syndrome, Autonomic Nervous System disorders including Postural Orthostatic Tachycardia Syndrome, Cardiac disorders of any nature, Polymyositis, Amyloidosis, Whipple’s Disease, Giardia.

Treatment suggested by the medical professionals after reviewing these tests

· Physical therapy

· Psychotherapy

Alternative treatments I’ve explored

· Acupuncture

· Chinese herbs

· Therapeutic massage (Rosen method)

· Yin yoga.

· Hmong shamanic healing ceremony

Symptoms

As of mid-summer, 2010. Many of these have been describe in previous posts, some of them are new or have evolved.

· Perceived muscle weakness

· Exercise intolerance

· Orthostatic hypotension Occasional intense light-headedness when rising from a sitting or crouching position.

· Episodes that mimic hypoglycemia Which include but go beyond the light-headedness described above.

· Fatigue fluctuating in intensity but nearly always present to some degree, and intermittently crushing. It’s usually pretty bad in the afternoon (so I try to get as much work as I can done in the mornings). I find that I do reasonably well when I get ten hours of sleep (less than that and all the other symptoms get worse), and/or when I have the opportunity to nap in the afternoon.

· Pain Migratory and fluctuating in intensity. It is most commonly a diffuse sort of pain which I can only describe as “cellular” – meaning that it feels like it’s an accumulation of pain emanating from all of my cells. So rather than being focused in one part of my body, it feels more like a cloud of pain that engulfs me. It’s a bit like the ache you get with the flu, but it’s not even as focused as that. In addition to this diffuse, cellular pain, I also get more acute, focused but migratory pain in my joints and muscles. Sometimes it feels clearly like nerve pain – shooting, electrical shocks that hit the tops of my feet or my thighs or my upper arms. Other times it’s just a regular old pain, like the ache you feel after having been punched.

· Neck pain I separate this from the rest of the pain because it is a recent development and because it has a different quality. I first noticed it late in the Spring during my yoga class. I thought that I had strained a muscle in my neck. But it hasn’t eased off, the way a pulled muscle does. Rather, it’s gotten worse.

· Weight changes From a high of 187 pounds in January of 2009, I reached a low of 157 in June of that year. Since that time I’ve gradually regained much of that weight and I’m currently in the 175-180 range. The changes in my physique have remained, however. The muscles in my arms and legs look different than they used to in ways that are difficult to describe. It’s hard to say whether the muscles are more defined, or the spaces between them are less so. In general, my body seems bonier than it used to be.

· Neurologic symptoms These are numerous and often so bizarre that it is difficult to describe them. They include:

o Fasciculations Muscle twitches and spasms. Although they vary in intensity and location, they have been one of the most constant features throughout all of this. Sometimes they’re very intense, other times they’re mild. Sometimes they hammer away at one spot on my body, other times they seem to hit all over the place, randomly. Sometimes they bubble around constantly, other times they’re just sporadic, random blips.

o Numbness, tingling, and buzzing This is a catch-all category for a variety of odd experiences. I have areas on my body – especially the outside of my legs below the knees, and on the tops of my feet – that feel like they have been permanently shot up with novocaine. In addition, I experience varying degrees of tingling numbness in various parts of my body, but especially in my hands and feet. When I lie down, the soles of my feet feel like they’re burning. And I’ve started to experience a distinct “buzzing” feeling which is different from both the fasciculations or the tingling or the shooting nerve pain. It’s localized and it goes off in my body the way a cell phone goes off when it’s set to “vibrate.” It’s a discrete buzz that starts and then stops and then repeats, sometimes for hours. I can get it in the base of my groin. Or in my thigh. Or anywhere.

o Migraine-like aura This is a new one. I’ve only had a true migraine a few times in my life and it’s been years since the last one, but I remember well the unnerving optical sensations that preceded them, the “migraine aura.” Lately I’ve started experiencing that aura again, but without the ensuing headache. It’s like a bright, jagged stimulus hovering in my peripheral vision. It can occur on either side.

· Cognitive impairment This has probably been the most distressing of all my symptoms, because I rely profoundly on the agility of my mind in my work as a writer, a teacher and a psychotherapist. The cognitive fog that I experience can take many different forms, but I notice it most in the way that it affects the pace at which I can work. I’ve always got a running list of work that I need to do, which might include writing projects, including these blog posts, developing proposals for presentations (such as the one I’ll be doing at the American Counseling Association next year), preparing for teaching (as I’m doing now for the Ethics course I’ll be teaching to counseling students this Fall). It used to be that these tasks sort of flowed by. But these days, the list stays static for long periods of times because my ability to focus clearly and think well has become a bottleneck. It takes a lot longer to get things done. I sit down to read and I simply can’t make my mind absorb the sentence in front of me. I try to write or to compose music and I find my mind to be filled with mud. Days can go by like this. It’s bad when I’m working, but it’s even worse interpersonally. Often during conversations, I feel like the mechanisms linking my thought to my speech are malfunctioning. As a result, a simple conversation can be exhausting to me. Seeing more than a few clients in a morning wipes me out. And presenting before groups, while not impossible, is very challenging, and very exhausting.

Why I don’t want to tell you any of this

What does it mean for you – for anyone – to know these things about me? This is a question I have struggled with throughout these past two years.

Mostly this has meant playing my cards very close to my vest.

But being sick and seeking a diagnosis, necessarily puts you in front of the eyes of others. And not just expose the gaze of the medical professionals whom you seek out for help.

Once you’ve been identified as being sick, everyone looks a little more carefully at you. They scan for the illness in you. Even more so when you’re sick without a diagnosis.

As a result of all of this, I learned some very effective ways to hold parts of myself out of public view.

I have worse fears than that, of course.

But for the moment I’ll keep them to myself.

Why I’m telling you anyway

But there’s something more. Something deeper.

[In part seven of this series I will explore what it means to abandon the hope of finding a diagnosis, and how doing was essential for my well-being.]

Older Entries

Life with Lyme 5

Life with Lyme 4

Life with Lyme 3

How To Be Sick

My Lyme Disease is Not The IDSA Lyme Disease

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I’m honored to be the featured artist in the Lymenaide Holiday Bazaar. Please consider supporting those with Lyme by visiting the Bazaar. And while you’re there, enter for a chance to win a signed copy of The Next Ten Minutes. The details are below.

Featured Artist

Featured Posts

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Music and sounds from this site

Mindfulness

Masculinities

Lyme Disease: blogs and resources

Beyond Words Authors

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Music and sound

China and Chinese

Twitter

Categories

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