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.