Life with Lyme 6

 7 Responses »
Sep 092011
 

Still fighting the fog

I’ll tell you right up front that writing this post has been a struggle. I’ve been trying to put it together for weeks but I keep finding myself blocked. Part of the problem is that it’s a long one…it’s been a long time since I’ve written about my treatment and there’s a lot I want to talk about. But the larger problem is my ongoing brain fog.

Sustained expressive thought has been extremely difficult for me for some time now. Interestingly, receptive thinking is not as hard. I can feel a clear difference between the two, although that difference can be tricky to describe. Reading seems like it’s mostly a receptive process, for instance, but it’s really not. Reading requires us to hold a set of themes or concepts in mind over a longer period of time, to engage in the expressive task of assembling meaning from the elements in a text. What I’ve found is that I can do pretty well reading short pieces like magazine articles – even if they’re fairly complex. But finishing a book has felt like an epic, nearly unachievable task.

These difficulties multiply when I try to write something of my own. When I try to imagine the shape of a piece of writing, I struggle with the cognitive work of holding  a series of related concepts in mind at once. In this post, for instance, I want to talk about a series of events (all of which happened several months ago) in my treatment and my day-to-day experience of living with chronic illness. In the first place that requires me to parse my experience during this time, identifying the moments which are most relevant and meaningful. And because I’m wanting not simply to chronicle my experience but to try to make meaning of it, I then need to consider what ideas and themes emerge from my experience, and to let my mind make associations to those themes so that they can guide the shape of an essay that develops.

I used to do all of this without much effort, certainly without having to think much about what I was doing as I was did it. But these days when I try, my mind grinds to a halt. That is literally what it feels like. I stop being able to think.

(What’s strange to me is that I’m pretty certain that by the time you’re actually reading this it’s going to sound pretty natural and effortless. I’ll have eliminated most traces of the struggles I’m describing. Because I’m not going to let myself sound like someone who is cognitively impaired. This creates a certain dissonance between my public persona and my inner experience. People often tell me that I don’t sound like I’m struggling cognitively. It’s good to know, but it’s also frustrating that people have no idea how effortful the act of thinking is for me, how much work it’s taking me not to sound impaired.)

The truth is, I can’t tell you how much time I’ve spent over the past year simply staring blankly into space. Dead time, in which I am aware of all the things I want to be doing without being able to do any of them. As I described in my book The Next Ten Minutes, I’m not a person who tolerates this sort of tedium well. In fact, it’s a sort of torture to me. Which is why I was happy to read Lyme advocate Ashley van Tol describes this aspect of chronic illness in a recent post about her experience with Lyme disease. “Honestly,” she writes, “being sick is really boring. Do you know what it is like to literally be able to do next to nothing day, after day, after day, after day?”

When people discuss chronic illness they usually focus on the pain, the physical limitations, the fear, the expense…all of which are very real issues. But personally, I could find a way to tolerate all of those things if I could just have my mind back.

 The good news is that I’m showing signs of improvement lately. Even cognitively. But the road to this partial improvement has been rough. Symptoms cycles persist and as always, trying to figure out the prognosis of my illness by looking at my symptoms at any given moment is not unlike trying to predict the future by looking at a pile of animal guts. Not (as readers of this blog are well aware), that I’m opposed to animal sacrifice in the service of healing from chronic illness.

Working with transference

In my last update, I talked about the overlapping anxieties I experience around each of my medical appointments. Since that post I’ve realized – again – that there can be good reason for those anxieties. Medical professionals are human, after all. Even the best of them sometimes they have off days. Sometimes they screw up. Sometimes pretty badly.

(That should give you some idea where this post is going.)

Given this fact it’s been helpful to me lately to reflect on the psychological phenomenon of transference, which plays such a powerful role in how we all navigate my medical treatment. It’s a concept which originates with Sigmund Freud, who described how, in the normal course of psychoanalytic treatment, inexplicably positive and negative feelings toward the analyst arise:

 We mean a transference of feelings on to the person of the doctor, since we do not believe that the situation in the treatment could justify the development of such feelings. We suspect, on the contrary, that the whole readiness for these feelings is derived from elsewhere, that they were already prepared in the patient and, upon the opportunity offered by the analytic treatment, are transferred on to the person of the doctor. (Sigmund Freud, Introductory Lectures on Psychoanalysis,)

 It’s safe to say that the core of most transference reactions comes from the feelings and hopes that linger from unresolved childhood experiences with our own parents. More specifically, as an attachment-focused therapist, I tend to see these transference dynamics as expressions of unmet attachment needs and attachment-related anxieties.

To put it more directly: deep within all of our psyches lies the fantasy of the perfect parent – the person who understands our needs exquisitely and without our having to express them, and who meets those needs unfailingly. Obviously this is not a realistic desire, but it’s a powerful fantasy and if you pay attention you’re likely to find it creeping out in many relationships in your life (not least of all with your actual parents).

Correspondingly, we all harbor within us some ancient and visceral sense (“memory” seems too refined a term for it) of our reaction to the failure of our parents to meet our needs. And that (picture an infant being denied the breast) in its rawest form is rage. The expectation of being disappointed (for we all come to develop such an expectation) also seeps into our everyday relationships. As much as part of us longs for the ideal parent, another part of us is always waiting to be disappointed.

In some of the more dramatic forms of psychopathology (borderline personality disorder, say), the oscillations between these two extremes become violently dysregulated. But in most of us, it’s a low-level force that operates subtly in our relationships, only occasionally getting more dramatically triggered.

It’s most likely to get triggered when our attachment needs get activated (i.e., when our need for either care or for autonomy is at its strongest), as inevitably happens within doctor/patient relationships.

As a psychotherapist, I’ve trained myself to be acutely alert to transference (and counter-transference) both within the therapeutic relationship as well as in my everyday interactions. That awareness is what makes it possible for me to stay level-headed when a client refers to me (as one recently did) as a Jedi Master. Because I can know that I am not in fact an all-powerful teacher but rather I’m the beneficiary of that client’s positive transference reaction. It’s also what keeps me from acting irrationally when I project the same sort positive transference onto the people who care for me, by, say, developing  a crush on my yoga teacher.

Because of their role in caring for others, medical professionals can be the targets of some of our fiercest psychological transference reactions – both positive and negative. And all of us who endure chronic illness would be wise to do a little work to understand the nature of our own transference onto our practitioners. Do we head into our doctor appointments filled with the unrealistic hope that we’ll receive a miraculous healing? Or do we brace ourselves, expecting to be ignored, dismissed, abandoned? I guarantee you that both of these fantasies are active in you to some degree, consciously or unconsciously, every time you interact with a medical professional.

It gets trickier when those fantasies find a foothold in the actual behavior of physicians and nurses. Because medical professionals are not pure vessels of therapeutic and diagnostic procedures. They are subject to their own psychological storms. They have the same fantasies and anxieties about care and being cared for that we do. Sometimes they really do perform extraordinary acts of healing. And sometimes they really are assholes. The point is not to ignore the reality of these actual behaviors, but simply to learn to figure out the difference between our fantasies and the reality in front of us.

In my particular case (and without going into a full-blown psychological self-assessment), I’ll summarize my version of this struggle by saying that my childhood experience imprinted upon me a deep fear of expressing a need for care to others, which is reinforced by a stubborn expectation that expressing such a need will lead to my being dismissed, ignored, and shamed. That expectation doesn’t extinguish the need, however. It just drives it underground where it grows more fierce.

As a result, even when I’m at my best I’m always scanning hyper-vigilantly for any sign that the person who is supposed to be caring for me is uncaring, dismissive, scornful or simply inattentive. Some part of me is always ready to slam the door on the relationship at the first glimmer of disappointment.

And I suspect that I’m not alone in this experience.

Agitation

So here are the series of developments which wound up putting  all of this lovely theorizing to a real-world test.

First, there was the process of getting blood drawn for the new tests (for mold and fungal infections) that my doctor had ordered at my last visit. These tests, it turned out, were highly specialized and the doctor wanted them done by a particular lab. After several fruitless visits (fasting, of course) to the lab at my local hospital, and many phone calls, I finally located a doctor’s office here in Missoula who worked with the right lab.

At the same time, I’d been phasing in all of the new medications that had been ordered at that last visit. I phased out Rocephin and Tindamax, and started a new cocktail of Rifampin, Septra, Plaquenil and Lamisil.

A few weeks after I’d phased in all of these new medications, I started to experience a confusing shift in my physiological and psychological state. One night I found myself agitated, unable to sleep. I was up for a lot of the night and I braced myself for a difficult time the next day. But oddly, I didn’t feel tired during the day. Rather, I continued to feel agitated and restless, like my metabolism was revved up.

This was very unusual for me – I usually need lengthy naps in the afternoon – and stranger still was the fact that this state continued over the following days. It wasn’t some momentary anomaly (of which Lyme has created many). It was a distinct shift in state.

The most disturbing aspect of this shift was that it gave rise to an anxiety which was very difficult to regulate. Now, as I’ve described in the past, I’m no stranger to anxiety. I’ve got an anxious temperament and I’ve had doctors try to blame all of my health problems on that anxiety. But, as I’ve also described, I’m on pretty good terms with my anxiety. I’ve worked with it for years and it no longer disrupts my life in any significant way. My anxiety and I understand each other well, and with the help of a great deal of psychotherapy, we’ve learned to coexist.

Which is how I knew that what was happening to me was unusual. This wasn’t the anxiety in myself that I knew so well. As I observed my mind, I saw that the content of my thoughts was no different than usual. I was worried about the same things I always worry about: health, money, relationships. The difference was that I suddenly found myself to be unable to manage that worry. Now it seemed to be driven by a physiological shift that I couldn’t control.

I realized that my mind wasn’t actually anxious, but that my body was mimicking the physiological state of anxiety, which was fooling my mind into behaving anxiously.

Understanding that helped to keep me from getting completely swamped by anxiety. But it still took a lot of energy to keep my head above water.

Then a call from my local doctor confused matters more. I continue to have blood work done every three weeks ago, to check on a number of different baseline levels in order to be certain that none of the meds I’m taking are causing any damage – in particular, liver trouble. Mostly I didn’t hear anything about those tests and I assumed they were all normal. But it turned out that the most recent results showed that one of my thyroid levels had risen distinctly.

What made this particularly strange – aside from the fact that I’d been on a consistent regimen of thyroid medication for years which had kept these levels in a tight range – was that while my subjective experience (agitation, anxiety, a revved-up metabolism) would indicate that I might be hyper thyroid, the test showed that my blood levels were in fact hypothyoid.

Very strange. My doctor didn’t know what to make of it, and she wanted me to talk with my Lyme doctor about it, due to all the possible complications with the medications I was taking.

So I called.

Now I rarely call the doctor in between scheduled appointments. That’s part of my transference reaction toward doctors – anticipating that I won’t be cared for adequately, I try to minimize their perception of me as an overly needy or demanding patient. It’s a bit of subconscious bargaining that corresponds with my attachment history: if you care for me well enough, I promise not to need you too much.

So when I do call, there’s a good reason for it. But this call was, to say the least frustrating. I spoke to an office worker I didn’t know, who in turn communicated my concerns to one of the practitioners, then conveyed their response back to me. (In other words, it was literally a game of telephone.)

          Throughout the call I had the distinct feeling that I wasn’t really making myself understood…that I wasn’t being understood. And that is a significant trigger for me in terms of the transference dynamics that I’ve been describing here. Not being heard puts me in a bind. If I protest too much I worry that I’ll alienate my caregivers and lose the care that I need. If I don’t protest, then the whole interaction becomes a pointless pantomime, in which I’m accepting advice which is not grounded in an accurate understanding of my complaint. I try to thread that needle, but I know that when I’m under stress I err on the side of not advocating for myself enough.

I was looking for something specific in that call. I was seeking to tap into the collective experience of this office in treating tick-borne illness, to be able to put my symptoms into some sort of context. Was this a symptom they saw commonly? Had they seen other patients react to medication like this? Or did it seem to them like an anomaly?

But when I described the agitation that I’d been experiencing they responded that I was experiencing a “flare-up.” Given that what I was describing was a new symptom, this seemed to me an utterly non-sensical term. A flare-up of what?

It felt like a brush off.

That frustrating call – I never felt like they had an accurate grasp of what I was describing – ended with several concrete suggestions. They sold me a supplement with the idiotic name RelaxMax (I’ll save for another day my rant about the conflict of interest involved in doctors’ offices selling supplements to their patients) and asked me to try that for a while. If it didn’t help, they suggested stopping the Rifampin for a few days to see if that was causing the problem.

In spite of my frustration with the call, I was willing to give these suggestions a try. The RelaxMax didn’t affect the agitation in any noticeable way. So I moved on to Plan B and stopped Rifampin. Doing this heightened my Lyme symptoms so much, so abruptly, that I never had time to figure out whether Rifampin was the source of the agitation. After a few days I started it up again, relieved to at least have figure out one thing: Rifampin seems to be a good drug for me right now.

That left me with the agitation, which it seemed to me was something I would just have to live with. At the end of the call to the doctor’s office they told me to call back if these two solutions didn’t help. But given how frustrating that call had been, I wasn’t motivated to go through it all again. I’d just live with it. Which is what I’m continuing to do. Months later, the agitation has calmed down somewhat but not completely. I’m back to my exhausted afternoon naps, but if I’m not careful my ever-day worries can still spin too quickly into panic.

Preparing for the phone consultation

Several weeks after that impromptu call, I had my next regularly-scheduled phone consultation. Ahead of every doctor’s visit and phone follow-up, I prepare a summary of my current condition and symptoms, along with a complete list of the medications and supplements I’m taking. I fax all of this to the doctor’s office a few days before the appointment. (They shouldn’t need a list of medications from me – they should have that – but I send it anyway just to be completely sure that they have the correct information, given how many meds I’m taking and how often they change.) I put a lot of thought and energy into these summaries, in the hope  that they will provide the proper focus for the clinician, that we won’t waste time while he or she gets up to speed about what’s going on with me. We can hit the ground running.

The other reason that I focus so much energy on these summaries is that the appointments themselves always makes me anxious. Why? Once again, it all comes down to transference. I’m acutely aware that for the next fifteen or thirty minutes I’ll be engaged in a relationship in which I am seeking care from another human being. And as a result, all of my attachment anxieties are activated.

I know several things about myself when it comes to medical care. I know that ahead of any interaction with any medical professional I will struggle with fantasies of both perfect care and absolute disappointment. I know that the latter is a stronger fantasy than the former. And knowing this, I do my best to hold both of these notions in check so that I can be as clear-headed and realistic as possible during those interactions, in the hope of being able to accept the care that is actually offered while simultaneously being realistic about the fallibility of my caregivers.

I do my best to stay conscious of all of these dynamics, to remain aware of them without giving in to them. It’s emotionally exhausting, but absolutely necessary if I’m going to express myself clearly and hear clearly what is being said to me during these appointments. (Transference, by the way, is yet another reason why I always record my appointments. What I think was said to me during an appointment, and what I actually hear when I listen back to the recording are sometimes strikingly different.) I think I’ve gotten pretty good at rising above myself, at letting myself be cared for in the face of these unhelpful dynamics.

This month the call was scheduled with the doctor’s assistant, who was the first person who had treated me at the office and with whom I felt I had a decent rapport. There was nothing in particular about her personality, in other words, to trigger my anxiety.

In my summary to her ahead of the call I described my ongoing symptom cycle, which, although possibly incrementally better, was largely unchanged since the previous appointment. I emphasized several issues that I needed to discuss. The first was my elevated TSH level on my last blood tests. Second, I wanted to hear from her about the results of my blood tests for mold. I was mildly annoyed that the office hadn’t communicated the results of those tests, but I set aside that annoyance knowing that I’d have the chance now to discuss them. Finally, I described a brief anomalous period of cognitive clearing which happened shortly after I’d started on Rifampin. For several days my thoughts began to flow again. It was a remarkable experience, which put me in mind of the movie Awakenings. I had ideas about things I wanted to write, and I could see the shape of those projects. I began mapping out ideas in my notebook. It was my brain functioning the way it used to. Then it went away. And losing that clarity was an exquisite sort of torment. It seemed a hopeful sign that it had happened at all, but it was puzzling and maddening that it had proved to be to fleeting. In the end, I simply didn’t know what to make of it.

The Consultation

From the first moments of the call I could feel that something was off. As a therapist, I’ve got a pretty good ability to read another person’s level of emotional regulation…and there was just something out of balance in the assistant’s tone of voice, in the rhythm of her speech.

Sensing this, my anxiety bumped up a notch. As I’ve described, part of me is always on guard against the moment, in which it is revealed that my caregiver is unable to meet my needs. I tried to damp this down. If she’s not at her best, I told myself, I’ll have to work a little harder at this. It’ll be okay.

“So,” she started, “it sounds like the Rifampin did good things for you.”

With that statement, my anxieties began to find some purchase. I’d described the experience starting Rifampin as an anomaly, but she’d taken that as a summary statement. It made me wonder how closely had she actually read what I’d written.

“Well,” I said, “I had a couple of good days there. But I haven’t had any since.”

She tracked through the evolution of my symptoms in more detail. She asked about my sleep. My sleep was okay, I told her, but the agitation that I was feeling during the day was still quite bothersome.

“So your local doctor thinks that it’s about an interaction with the medication?”

“No,” I corrected her, increasingly aggravated at how wrong she was getting things. “That was a concern about the thyroid levels. She also wanted me to talk with you all about that.”

She asked me what specific levels had been tested.

“You should have the results there,” I said. “She faxes them to you.”

I listened as she shuffled papers.

“I don’t see those lab results in your chart here,” she said.

My frustration ratcheted up another notch.

She made a vague comment about the possibility of drug interactions. I grew more direct.

“You need,” I said, “to have those tests results in front of you.”

But she didn’t, and in that moment there was nothing to be done about it. So we moved on.

“You also had mold tests done,” she said.

“Yes,” I said, “and I’m really anxious to hear about those results. You should definitely have those in front of you there.”

More shuffling as she found the papers.

“There are two parts to the testing,” she explained. “The first tests for the presence of mold antibodies. They’re scored on a 0-5 scale and you were reactive to some of them.”

It was hard to focus on the content of her speech because I was so distracted by the process of the conversation. She clearly hadn’t reviewed my chart or my test results before the call. She was figuring things out as she went along.

She moved on to the next part of the test, the Shoemaker Panel, which she described in some detail. Then she said something that rendered all of that explanation irrelevant.

“Unfortunately,” she said, “that part of the test wasn’t run because they didn’t have ripe samples of your blood. So we might have to re-do some of these, she said, to get a more clear picture.”

“Right,” I said. I felt furious at this point, but too off-balance to know what to do with my anger.

She continued. Had this visit been in person she might have seen from the look on my face how distressed I’d become. But over the phone she seemed not to notice.

“So the tests show you are reactive to some of the mold antibodies,” she said. “And fatigue and brain fog are some of the biggest symptoms we see with mold.” She noted that I’d been put on Lamisil, which addresses some of these issues.

“At this point,” she said, “I’d like to put you on a medication called Cholestyramine.”

As she launched into an explanation of what Cholestyramine is and how it’s used as a neuro-toxin binder, I felt my head spinning. I was forced to literally interrupt her, to remind her that she had put me on Cholestyramine at my initial visit, but that the doctor had just taken me off of it at my most recent appointment.

“Whatever you all think I should be on is fine,” I said. “But I just want to make sure that you’re not just moving me back and forth between things without one person knowing what the other is doing.”

She reversed course without acknowledging her error. She moved through a seemingly random set of questions about symptoms and reactions to medications. She asked about oral thrush. She asked about how I’d done when I’d stopped Rocephin. She talked about Bartonella and asked about pain on the bottoms of my feet, night sweats, vivid dreams. She said she wanted to put me on a new supplement, the amusingly-named BLT tincture. She took me off of the anti-fungal (Lamisil) that I’d been taking and she called in a prescription for Sporanox instead.

“Any questions?”

Oh, I had questions. But at this point all I really wanted was to get off of the call.

After I hung up I felt agitated, frustrated and frankly a little scared. The call had been a complete mess. I felt the two sides of my transference competing within one another. Part of me was ready to bolt, to abandon my treatment altogether. Another part of me wanted to minimize my caregiver’s obvious failings. That part of me was ready to bargain. This is lousy care, the logic went, but if I rock the boat I might not get any care at all, so I’d better just go along with it.

As these voices did battle in my head, I did the thing that I know to do when my attachment anxieties get so fiercely activated: I made myself wait. A few hours, I told myself, a few days. Nothing had to get figured out right at this moment. Let it settle out inside me. I’ll give myself time to tease apart old anxieties from the present situation. I didn’t have to do anything right away. I had time to figure it out.

The morning after

The next day, I still felt upset but the intensity had diminished. I went to pick up my new prescription.

My pharmacist, whom I love, leaned over the counter urgently as I approached.

“I didn’t fill your prescription,” she said, “because this drug they want to put you on has a huge interaction with something you’re already taking, your statin.”

She went on to describe the awful things that could have happened if I’d been allowed to take Sporanox and Simvastatin at the same time. Severe kidney damage from the break-down of damaged muscle tissue. Rhabdomyolysis. It’s right there on the drug’s information sheet, plain as day:

Human pharmacokinetic data suggest that SPORANOX® (itraconazole capsules) inhibits the metabolism of atorvastatin, cerivastatin, lovastatin, and simvastatin, which may increase the risk of skeletal muscle toxicity, including rhabdomyolysis. Concomitant administration of SPORANOX® (itraconazole capsules) with HMG CoA-reductase inhibitors, such as lovastatin and simvastatin, is contraindicated.

“I’ve called your doctor,” the pharmacist said, to ask them what they want to do. But I’m certainly not filling this one for you.”

With that, I reached a point of crisis regarding the continuation of my care. I was deeply shaken. This wasn’t just inattentive care, it was dangerous neglect. It confirmed my sense from the day before that the assistant hadn’t done the basic work of reviewing my chart before discussing my care and making treatment recommendations. She’d neglected to do one of the most basic tasks that anyone needs to do when prescribing any medication, which is checking for risky drug interactions.

If my pharmacist hadn’t caught it (and if I didn’t have an exceptional pharmacist it might well have been missed) I would have added another debilitating illness to everything that I’m already struggling with.

I needed to do something. Yet even in the face of this awful error, the idea of changing providers felt overwhelming. I didn’t want to change. I wanted this office to acknowledge it’s errors and make it right. But I needed to figure out whether I could trust these professionals with my care at all. Which meant that I needed to figure out a way to figure that out.

As I described my dilemma to a wise colleague, she gave me some very good advice. Put it in a letter, she said. Lay out what happened. But don’t do all the work for them – ask them to address the issues but don’t tell them exactly how. Give them the chance to rise to the occasion and that will tell you whether they’re able to own up to their mistakes and repair the relationship.

That’s exactly what I did. And through a series of interactions, things have worked out. In fact, they’ve worked out quite well. I feel happy about how I approached the situation and about the letter I wrote, which I ultimately allowed me to navigate between the twin transferential risks that I always carry with me as a result of my attachment history – abandoning all hope of care, and abandoning advocacy for myself.

In my next update I’ll post the text of that letter. I’ll describe the response it generated. And I’ll discuss how I’ve moved forward from this seemingly impossible point.

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Life with Lyme 5

 5 Responses »
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:

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

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

What he said was this:

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

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

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

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

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

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

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

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

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

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

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

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

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

Kicking the Dogs

So here are the medication changes that he actually ordered.

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

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

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

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

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

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

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

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

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

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

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

Response to treatment

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

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

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

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

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

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

“You look good,” she said.

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

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

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

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

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

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

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

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

But oddly I didn’t feel tired at all.

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

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

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

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

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

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

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

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

Guesswork

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

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

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

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

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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.

 

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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.

 

 

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Hmong New Year

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Dec 172010
 

Last Saturday my family and I were fortunate to be able to attend the Hmong new year celebration here in Missoula. Those who have followed my Being Undiagnosable series will know that while I was in the two-year process of searching for a diagnosis for symptoms which eventually turned out to be Lyme disease, a local Hmong healer offered to perform several healing ceremonies on my behalf. (You can read my account of that experience here.) since that time I’ve kept in periodic touch with Ia, the healer, and her husband Kou. I was thrilled when Kou called to invite me to the celebration and I wanted to post a brief description of the event along with a few pictures and videos.

The celebration took place in the gymnasium of a local elementary school. As we walked in we were immediately engulfed in the spectacularly colorful traditional costumes and the bright sounds coming from the men’s vests, decorated with rows of old French coins which jangled with every movement.

Before the ceremony we were led into the cafeteria, where giant pots of food awaited us. As soon as we walked in, Kou spotted us and welcomed us in.

“Thanks so much for inviting us,” my wife said.

“Of course,” he said simply, “you are family.”

And that’s exactly the way it felt throughout the evening. First we were fed, then we were led into the gymnasium where we watched a wonderful series of musicians and dancers perform. We were told that the dancing would keep going on until at least midnight. We didn’t have the stamina to last that long, but here are some scenes from the time we were there.




Kou and Ia, dancing




Musical performance using a banana leaf


Hmong flute performance



A dance done with a traditional musical instrument

I feel so fortunate to have Kou and Ia consider me a part of their family. I’m so grateful for the support they’ve given me in my illness. I feel held by their entire community.

If you’re interested in knowing more about Hmong culture, here are couple of wonderful books that talk about the Hmong in America. The first, The Spirit Catches You and You Fall Down, will resonate especially with those who have struggled with our fractured healthcare system. The second, The Late Homecomer, is a broader, beautifully poetic portrait of the Hmong experience.

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My Lyme Disease is Not The IDSA Lyme Disease

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Dec 092010
 
Borrellia

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


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Life with Lyme 2

 1 Response »
Nov 272010
 

First, the good news…

In my last update I described the medical tests that I was scheduling. I’ve had them all, and they all came back clean.

Arsenic: I re-did the arsenic test that had come out so high during the summer and this time it came back normal. This confirmed my hunch that the high levels on the previous test were the result of the Chinese medicine I’d been taking before the test.

CT scan: a year and half ago, long before I received the Lyme diagnosis, much of my worry about my symptoms centered around a recurrence of cancer. (I’d previously been treated for testicular cancer when I was in my twenties.) At that time I had an abdominal CT scan which showed a few small spots on my spleen, liver and lungs. The doctors weren’t too worried about these but they said that given my history it would be prudent to do a follow-up scan in a year to make sure those spots weren’t growing. The new scan showed that they were stable. In other words, non-cancerous.

MRI: the primary reason for getting an MRI of my head was to make sure that the cause of my human growth hormone deficiency wasn’t a pituitary tumor. In addition, even with the Lyme diagnosis I hadn’t quite stopped worrying that I might have MS. The neurological Lyme symptoms overlap a great deal with MS symptoms. But the scan came back clear. No tumor, no lesions.

All of this is a great relief. It means I can focus on what I know is wrong with me and let go of that lingering anxiety about other possible explanations for my symptoms. I can settle in with two definitive diagnoses. Human growth hormone deficiency and Lyme Disease.

Human Growth

The initial lift I felt when I started supplementing human growth hormone – the improved mood, the sense of physical fluidity – has faded over the past six or seven weeks. It’s possible that this is simply a perceptual issue. As any social psychologist will tell you, a change in state is perceptually more salient than an on-going state. As a change in functioning settles into a stable way of being, it becomes less noticeable. So it could be that the benefit I felt initially is still there but I’m just not experiencing it as acutely.

But I worry that what I’m experiencing is a repetition of something that I’ve felt in the past when I’ve started supplementing other deficient hormones: an initial surge of improvement followed by a rapid return to my previous baseline. I’m certainly not experiencing the common physical benefits that usually come with supplementing HGH…loss of body fat, increased muscle tone, increased exercise tolerance. It’s impossible for me to really sort this out, but I’m concerned that this is my body’s pattern: for whatever reason, I have trouble sustaining the benefits of supplementing any hormones. I want to be wrong about this. For now I’m continuing to give myself the nightly injections.

The causes of my HGH insufficiency remain mysterious. I’ve been asked whether it’s the result of the Lyme. I have no idea and I’m not certain what the mechanism for such an effect would be. I know that  lot of “Lyme literate” physicians

Borrelia

(LLMDs) are aware of the importance of getting hormones in balance as part of an overall treatment plan for Lyme. And I’m very aware that once borrelia (the spirochete that causes Lyme) gets a foothold in the body, it can spread throughout all the body’s systems. So it certainly seems possible that it could mess with the production HGH as well as everything else.

Understanding how my body is responding to continued HGH supplementation feels particularly important because it appeared that an initial effect of the HGH was to clarify the nature of my Lyme symptom cycle. HGH seemed to clear out the symptomalogical static so that, for a few months, a clear pattern could emerge: two bad weeks followed by two not-so-bad weeks. In the past six weeks that pattern has been disrupted (more about that in a moment). What this means is unclear to me, but it complicates my efforts to understand both my Lyme symptoms and my struggles with my hormones.

Existential doubts…an aside

While my naturopath was the one who diagnosed and is treating the human growth hormone deficiency, I continue to work with my internist as well, and (for insurance purposes as much as anything) I wanted him to put in the order for my recent MRI. The conversation I had with him about this was quite fascinating. He had, he reminded me, previously run a test for human growth hormone. His had been a blood test and it had shown normal levels of HGH. I was worried that he was reminding me of this result as a way to argue that the naturopath was wrong and that I shouldn’t be supplementing HGH. But instead he just got a puzzled look and told me that he simply didn’t understand what was going on.

“You’re responding to the treatment,” he said, “and ultimately that’s what matters.”

It is a very unusual thing to have a physician acknowledge the limits of his own knowledge. But what he said next surprised me even more.

“It makes me wonder whether anything we do works at all,” he said. “I think of those studies that show that a significant percentage of people who are ill will get better on their own without treatment. Maybe we do what we do, but people would do just as well without us.”

He mused for awhile longer on the possibility that everything that he had been trained to do was in fact meaningless. I felt an impulse to reassure him. Because it was unnerving to have a person who is caring for you profess such profound existential doubt about his own capacity to help. But I thought about my own experience as a therapist, about how I have experienced similar moments of self doubt and how I have come to accept them as an important part of the process of helping others heal. Those moments are humbling. But they open me up to new ways of thinking about seemingly intractable situations. If I allow myself to experience them fully, they open into transformation.

So I realized that this was an important moment for both my doctor and me. And that, by giving me access to his experience he was truly giving me a gift. I’d spent more than two years in a complex and deeply ambivalent relationship with medical professionals. I desperately wanting them to have the power to be able to figure out what was wrong with me while simultaneously harboring deep suspicions about their capacity to do this.

Here at last was someone who was describing this experience from the other side. The words he was speaking were words I both wanted to hear and feared hearing.

So I stifled the urge to say something comforting to him. I shut myself up and listened. Although it was frightening to me to hear his doubts, I recognized the gift he was giving me by expressing them. In the end I agreed with him that the business of healing is more complex and difficult than either of us could possibly comprehend.

Treatment options

As I’ve settled into my Lyme Disease diagnosis, I’ve discovered that life with Lyme actually has a lot in common with being undiagnosable. The diagnosis is fraught with controversy and confusion. And, as I’ve described in previous posts, treatment is equally fraught. The biggest controversy centers around the use of long-term antibiotics, which many LLMDs and their patients believe is essential for a full recovery from tick-borne illnesses.

But the dilemmas surrounding treatment, I’ve come to realize, are much more confusing and complicated than just that.

I thought, naively as it turns out, that once I found an LLMD my treatment would be fairly straightforward. I knew that it would take time, and that it might not be pleasant…but I didn’t expect it to be mysterious and confusing. Which is exactly what it has turned out to be.

To put it bluntly: there is no single clearly and effective treatment for Lyme Disease. Antibiotics get most of the attention, but even within this approach there are a multitude of types of antibiotics and forms of administration and beliefs about dosing. This book describes the “top ten” Lyme disease treatments. That this book exists tells you something about the state of treatment for Lyme. For most major medical conditions physicians will follow clearly established “standards of practice.” There are always choices in treatment for any illness, but those choices usually involve variations on an agreed-upon protocol.

But with Lyme, it’s a smorgasbord.

Schaller’s book lists, in addition to the “antibiotic rotation protocol,” the Marshal Protocol, the Salt/Vitamin C protocol, detoxification and rife machine therapy, in addition to a set of supportive

Rife Machine

supplemental treatments. Each of these approaches is long and complex. People I’ve spoken to who are following the Marshall Protocol (the micro-biological theory of which is difficult for me to comprehend), tell me that you have to commit to it for at least two years in order to for it to work. That’s a long time frame for a treatment for any disease…especially so for a treatment which may or may not ultimately be effective for you. But unfortunately it’s the status of most if not all Lyme treatments. And that’s where the largest dilemma arises with regard to treatment. Not all treatments work for all people with Lyme. But the only way you can know whether a treatment will work is to stay on it long enough to find out.

As a result, patients need to become experts on their own disease. We need to have enough confidence in our own knowledge about the disease to be able to disagree with the doctors we’ve sought out for help.

This can present a terrible bind.

It’s an emotional bind because we long, when we’re sick, to simply be taken care of by someone who understands our condition better than us.

It’s a cognitive bind because Lyme disease often fogs your brain and makes it difficult to think clearly. For instance, the simple act of reading has become much more difficult for me. It’s not easy to trust a foggy brain to be able to think clearly enough to have a coherent discussion with a physician.

This is simply not a model of medical care that we’re accustomed to. For better or for worse, we’re used to assigning expertise to medical professionals and simply following the treatment recommendations we’re given.

Lyme disease  presents you  with a plethora of possible treatments, many of which have fierce proponents, all of which will require a long-term commitment, but only some of which are actually likely to help you in a significant way at any particular stage of the disease. So you can’t just go to your doctor and ask her what you’re supposed to do. You have to consider that doctor’s beliefs about the disease. Which means that in addition to educating yourself about the micro-biology of Lyme and the mechanisms by which the various treatments work, you’ve also got to educate yourself about your doctor’s position on the disease and on its treatment. Then you’ve got to be willing to hold your own knowledge up to your doctor and be willing to switch to a new doctor if you don’t agree with her approach.

It’s a lot to ask of a person who’s feeling terribly sick most of the time.

Treatment efficacy

Having made the transition from “newly-diagnosed Lymie” to just plain “Lymie,” the most difficult question I face is this: how do I know when a particular treatment is working?

Karl Herxheimer

Am I feeling particularly bad today because it’s part of my usual Lyme cycle? Or is it because the drug I’m taking is killing off the spirochete and the die-off is making me feel worse? The increased symptoms that occur when a treatment is working is known as a “Herxheimer reaction.” “Herxing” can be intense and it’s one of the major miseries endured by people with Lyme. But when you’re “herxing,” it’s a good thing. It means that the treatment is working.

The distinction between core Lyme symptoms and the symptoms of a herxheimer reaction is crucial, but thus far I’ve found that it’s almost impossible for me to sort out the difference. And conversations with other Lymies reveal that this confusion is not at all uncommon.

Since being diagnosed I’ve done several rounds of antibiotics, hydrogen peroxide IVs, and tried several different herbal remedies. (There are a lot more treatments out there than just those “top ten” in Schaller’s book.) Up to this point my naturopath has been willing to shift her approach relatively quickly if a particular treatment doesn’t seem to be working. But I continue to struggle to make sense of the relationship between my physical symptoms and the treatment I’m receiving. My Lyme symptoms change so often that I’m hesitant to attribute any particular meaning to any particular symptom.

So I need to rely on my naturopath to interpret the symptom pattern for me; but I also find myself reluctant to trust her judgment. It’s an aggravating bind.

The treatment I’m following now, as I described in my last update, is called the Zhang protocol. It involves taking a set of Chinese herbal medicines over a period of six months to a year.

A few of my meds

I had an appointment with my naturopath after about three weeks on this treatment. At the time I’d been feeling particularly rotten. A lot of pain in my shoulders and upper arms, heavier than usual fatigue. I was frustrated by a lack of improvement and when I went in for the appointment I was ready to ask for a referral to a doctor who would prescribe antibiotics. But when I described to her what I was experiencing she felt strongly that this was a herxheimer reaction to the herbal medicine I’d been taking.

Was it? Honestly I still have no idea. In the days after that visit my experience was mixed. I had a few good days and a week or so that pretty miserable. At present I’ve been enjoying a reprieve from most of my symptoms. It’s been about a week and it’s a relief.

But I have to say, as an aside, that it feels like I’m not telling the whole story when I describe the good weeks in which my symptoms abate. Because these days the point of comparison for everything I experience  is my most recent Lyme flare-up. So when I say I feel better, it means that that my most miserable symptoms aren’t present. As a result, it inevitably occurs to me a few days into feeling better that there’s another, more important point of comparison: how I felt before all of this started in the first place. Then I realize that I’m keeping myself feeling better by avoiding a number of physical activities – running, skiing, shoveling snow, or even having sex – that will inevitably send me on a downward spiral. It’s a depressing but an inescapable thought; better in the short term is a far cry from regaining the capacity that I’ve lost since all this started.

In terms of treatment I’m left wondering: was the pattern that seemed to establish itself (two good weeks, two bad weeks) a true pattern in the first place? I simply can’t get a good read on any of it. But given the choice between continuing a treatment that might be starting to work or jumping ship and starting in a new direction, I’ve decided to stick it out with the Zhang protocol for the time being.

Community

Although Lyme obviously exists here in Montana, it’s not terribly common. I know a few people who have or had it and it’s great to talk to them. But it’s not enough. There’s something terribly lonely about the experience of chronic illness. For one thing, it’s usually invisible to people around you. Most of the time I look fine. Even if I’m feeling awful.

When you live with this disjunction between your appearance and your experience you inevitably start to feel isolated. Inside your mind the flow of your days is defined by your shifting symptoms. It’s what you think about most of the time, whether you want to or not. But there’s only so much of this you can report to those around you. Even to those who love you the most. You risk becoming an awfully tedious person, constantly describing your aches and pains, your fears about your health and your sorrow and grief about the life you’ve lost.

So one of the most important things I’ve found for myself is the on-line community of Lymies. It’s the universal algorithm of support groups: those who are going through the same thing you’re going through “just get it.” They can understand not only the surface meaning of what you say but also everything behind it.

Being understood is healing. This feels as important for me as any medical treatment I’m receiving. I don’t necessarily trust any of these treatment to work, and I know that if it does it may take a long time. But I do trust the capacity of others with Lyme to understand what I’m going through and to offer their support.

And it’s good to discover something that remains constant in this perpetually shifting disease.

 

 

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

 

 

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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
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