Life with Lyme 4

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.