I didn’t think I would be able to write this diary, to tell you the truth. How can you write when your brain isn’t working? As of early this year my brain was still too scrambled to write anything sensible. But I really wanted to contribute, and MsGrin has a way of being forceful, er, I mean, encouraging, so I started making some notes. Then finally over the past couple of months my treatment seemed to kick in, and I’m functioning better, at least part of the time. So I have written this in fits and starts, whenever there’s a good day, kind of like running out to the garden when the rain stops. Making hay while the sun shines, so to speak.
May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series is eclectic, including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us all month in learning about this rampant disease and the medical/financial/political morass in which Lyme patients find themselves.
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Discovering my Lyme disease
As briefly as I can put it (this is the boring part), I am 57 years old and up until about 4 years ago was mostly healthy, just allergies and sinus issues. My husband and I eat a healthy vegetarian diet, and about a decade ago to celebrate our mid-life crisis we got off the couch and took up exercising. So at the time I started getting sick (fall of 2007) I was quite fit and athletic for my age. I don’t think that most of the doctors I consulted believed there was anything wrong with me. My blood work all looks great, my symptoms sounded “vague.” I kept on going to doctors though. One specialist even said to me, toward the end of our interview, “Why are you here???” I was too stunned to answer. I thought it was obvious that I was there for some help, but apparently I did not have the right test scores to qualify.
This dragged on for three years. No doctors had any suggestions for me. But I was sure there was something wrong with me and I knew it was getting worse, and I knew that (at my insistence), we’d ruled out the most obvious illnesses and conditions. My internet research kept bringing up Lyme with similar-sounding symptoms, but I’d been tested for that. . . until I read here on Daily Kos that the test I’d had (ELISA, basic screening test) was known to be unreliable and give false negatives. When I finally got the most accurate test done (Western blot panel from Igenex Labs), enough bands showed up there to suspect a borrelia infection. I heard about a wonderful Lyme specialist (thanks to a diary by Stranded Wind) whose practice is a six-hour drive from my home.
When the Lyme doctor evaluated me, he said my symptoms appeared to be “classic” for Lyme. I started my treatment over a year ago (March 2010), and right away noticed improvements. I am still a very sick puppy, though, and the process has been one of taking two steps forward, one step back. I am getting better slowly, but am still unable to work and much of the time practically bedridden. I’m a slave to my treatment and take pills, potions, lotions and shots (96, 5, 4 and 1, respectively) all throughout the day.
Now, I did not write this in order to tell you about my Lyme symptoms! You really don’t want to hear all that, believe me. I think my original list of symptoms was two and a half pages long, single-spaced, and I could drone on and on about each and every one of those ailments. It is all pretty horrible—joint pain, muscle pain, severe fatigue, extreme weakness, and a hundred other things. Mostly, as my doctor said, it’s typical Lyme. Or as a friend of mine put it, “some kind of science fiction.” (She lacks a medical degree but knows weird when she sees it.) There really isn’t anything very interesting to write about being sick in bed for ages, though. Imagine a bad case of the flu, how grungy you feel for several days, and then multiply that over two or three or more years. Whee.
What I do find most bizarre and fascinating however, perhaps in part because of my background as an educator, is the effect of this infection on my brain. I don’t like having my gray matter messed with!!! And that is what I came here to write about.
My brain problems
Here is my description of over a dozen of the brain problems I’ve experienced, and how they are developing for me during treatment. From what I understand, and from what I hear from other Lyme sufferers, they are common complaints.
• Brain static. At its worst, a year or so ago, my brain felt like one of those old black-and-white TV sets with the rabbit ears, where you can’t quite get the reception to come in but you can tell there’s a broadcast there. The static produced virtual electronic noise preventing me from thinking, “Bzzz, shhh, bzzz,” and I also had actual noise in the form of my ears ringing. So I would have a hard time extracting meaning from whatever was going on around me.
• Brain fog. This is something you hear about a lot with Lyme and I think it’s common. It’s just about what it sounds like, you feel foggy, a bit lost, like you’re not really quite there. For me it’s been practically a constant state although recently because of my treatment I have more and more clear brain days. There are some days when I don’t answer the phone because I know I can’t respond adequately. For me the most difficult struggle has been trying to talk to doctors through this incoherent brain haze. How to formulate your thoughts into words that will make sense in an environment where being articulate is crucial?
• Problems focusing. I have a hard time getting a mental grip on anything. I can try really hard to read something, for example, but just can’t make it go into the right slot. This is more severe, the more challenging the material. Earlier, at its worst, I couldn’t even look at a Land’s End catalog because it was just too overwhelming and too hard to concentrate even on one page. Now, many months later, it’s a lot better. I am able to read books if they are light reading and can read blog posts in limited chunks. Although I still don’t read the Land’s End catalogs. . . but that’s more because I’m spending all of our available money (savings, retirement accounts, penny jars, etc.) on treatment and don’t have a clothing budget. Oh well, I mostly wear jammies anyway.
•Problems speaking. Until recently I’ve been frustrated by not being able to express myself verbally. Often I have something I know I want to say, I will open my mouth and try to make the thoughts come out and nothing happens—it’s like I’m practically choking. The more frantically I try to speak the worse it gets. It’s been almost impossible to tell people things! Now that my treatment is progressing this problem has diminished and mostly crops up when I’m tired or ‘herxing’ (Jarisch-Herxheimer reaction; symptoms caused by the die-off of the bacteria).
• Problems with words. This is not quite the same as the speaking problem. Sometimes when I’m trying to say something, the wrong word comes out. For example, in the grocery store with my husband I was looking right at a cauliflower and said “Why don’t we buy a. . .” but the word that came out was “sponge.” Well, I suppose a cauliflower does look something like one of those natural underwater sponges, so maybe my brain is actually doing something right here. It is very weird, though.
• Problems learning. Learning new things has always been a delight to me and and it’s very frustrating not being able to do it. If there’s an unfamiliar word, a new term or an unusual concept in something I’m reading or hearing, even if it’s explained (or I look it up), I still can’t get it to make sense in my mind. It’s like new information just won’t sink in; it drains off in rivulets. Where this is most frustrating is concerning the very information I would most like to learn about—Lyme disease! I am unable to read and digest or extract substance from books and articles, even though I try. It’s like it’s all just noise and won’t coalesce into a tune for me.
Early in my treatment I was so desperate for information that I would print out articles for my husband to read and have him explain them to me. Sometimes he’d have to explain several times before I could even get the gist. Even the instruction sheets from the doctor were challenging to deal with.
I see signs that this is improving lately. I had to laugh, because during the Wisconsin election and subsequent recounting, I have found myself avidly reading up on all the details of Wisconsin politics, maps and all. I was really “getting into the weeds,” enough weeds to choke a goat! When I stepped back I realized that I was absorbing a lot of new information—well, maybe it just has to be something that inspires you enough to galvanize your brain into learning again.
• Figuring things out. This used to be my strong suit. I am self-taught in a number of wonderful things and have always been a great problem solver. Now since my illness I am baffled by almost any dilemma. Changing the battery on the kitchen clock took me two or three days to manage. Over time as devices like an inkjet printer go haywire, instead of fixing them or replacing them as I would have before, I have been tentatively stacking these things in the hallway. This has been going on for several years and it’s beginning to look like an electronics dump around here. Eventually I’m going to need several hundred megabytes of brain to deal with all that stuff.
• Problems making decisions. I am utterly unable to make decisions, even of the most trivial kind. For example, can you sort a stack of mail? I can’t. I will stand there with a handful of mail thinking I should go through it, and get completely blocked two or three pieces into the job. Throw out? Open, then throw out? Put on hubby’s pile? Put on my pile? Where to put bills so they don’t get misplaced? This may sound completely trivial to you, but it’s like climbing Mt. Everest to me. I usually give up and just dump it all on the hallway table with the rest of the unsorted mail, which come to think of it does look something like Mt. Everest.
Actually, the decision-making problem is a big issue for me in writing this diary. How much to say? Which issues to cover? Which items to leave out? How to avoid writing too much? Well, too late for that, I’ve probably already written too much. The ability to be selective and discerning is completely beyond me. I think it’s the mail-sorting challenge but at a slightly higher level.
• Problems multi-tasking. Multi-tasking never used to be my strong point anyway. I’m more of a one-project-at-a-time person. It is astonishing to me, though, how much multi-tasking is required in daily life and when this ability goes, it is extremely limiting. Just think for a minute, if you cook, of how many different things you do simultaneously while you are making dinner? I could write a whole diary just about that, LOL. To make a long story short, I just can’t do it. I used to cook a lot, now I can’t do it, period. If I try I will just freak out and lose it. On a good day, I can do one thing, like put the potatoes in the oven, or start the rice cooker. Then I have to leave the room, I can’t cope with any more. Fortunately, my husband will cook the rest of the meal when he gets home, so it works out okay. But it makes me feel totally and completely incompetent.
• Memory problems. When I walk into a room, I forget what I was going to do there. Constantly. (There’s a term for this, but I can’t remember what it is, LOL.) Usually I can’t remember what it was I was going to do no matter how hard I try, so I give up and just go do something else. I can be taking the laundry out of the dryer, stop for a bathroom break (we Lyme people have busy bladders), and then not remember the laundry until the next time I happen to wander into the laundry room. Why is the dryer half-emptied? How strange.
Some people ill with Lyme say they have such bad memory problems that they can’t drive a car without getting lost. I am proud to say that this doesn’t happen to me. When I am driving, I always know exactly where I am. The problem is, I frequently forget why I’m there. Was I on my way to the vet? The health food store? I’m trying to think quick before I miss the turn. Very often I have to backtrack when I realize I’ve just driven past the pharmacy. And, I have occasionally arrived home only to realize I did only one of my errands and forgot the rest. I guess I just got in the car and turned on the homing signal.
• Problems with anxiety. I get anxiety attacks now and then. I’m not sure if this is a physiological thing or if it’s the result of frustration, or both. My husband knows when I’m starting a herx before I am even aware of it. He comes home and finds me bouncing off the walls in panic about something. Instead of saying “Calm down,” he says “I think you’re starting to herx.” What a smart man.
Dealing with stress? No. I can’t do it. I don’t even want to give you an example. Think of something even remotely stressful? I can’t cope with it. If I have more than one thing on my to-do list for the day, it stresses me out so much I can’t think. Fortunately, I can keep that to-do list to a minimum as I am unable to work anyway and have suspended my business for the time being.
• Feeling of isolation. For a long time, I had the sensation that my mind was inside a darkened room. I could see the outside world, but only just barely as if through a peephole in the door. I could communicate with people outside, but only with great difficulty. As my treatment has progressed, more and more curtains have opened up inside this room and there is more daylight coming in. It’s a great relief.
• Sense of humor. I think that my sense of humor is a good indicator of how well I’m functioning. On my lowest days, I am merely dragging myself into the kitchen to eat, take pills, go back to bed or sit in a hot bath. Nothing seems remotely interesting, let alone amusing. On days when I’m feeling objective enough to take a humorous view of something (anything!) I know I’m doing better. It’s like my brain has more energy to look beyond the discomfort and evaluate things in a larger context.
For example, it was very upsetting that I couldn’t find my car in the parking lot the other day, but when I finally did, I thought it was funny. I had parked right smack up next to the store (not in a handicapped space though). I wandered all over the two acre parking lot, reminding myself that no one would steal an 18-year old Ford, so it had to be there somewhere. I finally walked back to the store thinking I’d regroup, maybe drink some water and rehydrate, and there was my car, seven feet from the entrance. I patted my Obama sticker fondly and collapsed into the front seat in relief. The whole thing struck me as amusing. Not horrible, as it would have a few months ago.
• Problems writing. It seems strange, but although I can type fairly well, especially if I take it slow, when I’m writing something by hand sometimes I can’t make the words turn out right. I will omit letters (like ‘heath’ instead of ‘health’), swap letters around or put in the wrong letters even in very familiar words, and this happens even if I’m watching carefully and trying to concentrate. It’s like somebody else is controlling my hand.
As far as expressing myself in writing, with Lyme in my brain my ideas are like Jello and they are very hard to grab onto or manipulate. How can you write, when you can’t think or remember what you were thinking? The novelist Amy Tan (reference below) wrote that when she had Lyme disease she couldn’t write because she couldn’t keep all her characters in her head at the same time. It made made me realize suddenly how incredibly sophisticated and non-linear the act of writing is—maybe it’s the most complex task we do with our brains.
• Other problems. Frankly, this isn’t anywhere near a complete list of things that have gone wrong. However, I am running out of pixels so had to stop.
Conclusion (and you thought there was no end to this!)
Of all the things I’ve said in this diary, I haven’t written about the things that cause me the most anguish. I guess there are some things I’d rather write about in hindsight or when there’s some future resolution. I will certainly look at the world differently as a result of this experience, and I have most certainly gained admiration for my fabulous brain which I never appreciated enough when I had it! Amy Tan’s collection of personal essays, “The Opposite of Fate” (2003) includes a long final chapter about her experience with Lyme disease and her struggle to write while she was sick. It is a fascinating account and I recommend it to anyone interested in her work and the writing process. It’s encouraging to know that she’s published a couple of books since her illness. The greatest gift to me, though, is the title itself. What IS the opposite of fate??? Pondering this is delightful and makes me feel more like a human being and less like some piece of debris washed up on the shore.
Having this bacteria in your brain seems kind of creepy and the consequences seem frightening. I intend, however, to be one of those who recovers from Lyme and goes on to lead a normal life again. I am planning on it, working toward it and fighting for it. As my doctor said, “The real Sillia is still in there.” I know she is.
Things I am interested in learning more about include: music and the brain, nutrition and the brain, reading and the brain, exercise and the brain, meditation and the brain, and of course last and certainly not least, antibiotics and the brain. Wouldn’t it be great if some combination of these things would help us to overcome borrelia and restore brain function?
Also From the 2011 Lyme Disease Awareness Series: