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

(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

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?

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.

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.