Part 8: Commencement

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

The end

The conclusion to this story is a story unto itself.

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

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

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

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

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

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

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

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

The fantasy is that a diagnosis will be an explanation.

But mysteries will remain. Mysteries will always remain.

And so the message is the same.

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

Persist

What made the difference?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lyme

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When it’s Lyme Disease.

From testing to treatment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Heavy metal

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

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

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

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

It just didn’t make sense.

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

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

It seemed possible.

Full Circle

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

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

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

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

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

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

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

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

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

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

What did all that mean?

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

None of it seemed to change anything.

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

Again, nothing.

It turned out that I had a serious HGH deficiency.

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

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

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

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

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

Another MRI is in my future to check that out.

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

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

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

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

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

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

Unanswered questions

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

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

Here’s what I believe at this moment.

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

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

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

Am I convinced that I don’t have ALS?

Absolutely.

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

No.

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

Not at all.

How would I describe my health at this moment?

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

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

And unanswered questions keep coming into my mind.

Why did I lose all that weight last year?

Do I have a pituitary tumor?

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

How long have I had Lyme?

How treatable is my Lyme?

Will I ever experience my sexual self again?

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

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

As we all are.

 

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