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

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

Arsenic

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

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

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

Endocrinology

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

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

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

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

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

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

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

Lyme

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

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

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

Which is helpful to know.

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

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

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

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

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

Loose ends

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

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

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

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

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

Read the next installment of Life with Lyme here.