Tuesday, November 30, 2010

All Wired Up


My latest fashion accessory is a Holter monitor, which is going to chart my heartbeats for twenty four hours. So I have should end up with a graph that shows the pauses and lurches it's been doing for the last few days.


I'm deep in the American medical system now, piling up specialists like crazy. But my cardiologist is a gem. During the consultation when I was in the ER, he prescribed beta blockers, and I had a day and a half before seeing him in his office to get worked up about not wanting to take them, and prepared myself for the usual fight. But no! He said now that he'd gotten a look at me -- and seen my more usual low blood pressure readings -- he changed his mind. No meds. Hoo-ray.


The gem of a cardiologist explains my lurching heart as being irritated by something. Could be the antibiotics, could be bacterial die-off, could be, well, anything. He says I can have as many as HALF of my heartbeats be irregular, and be all right. But it depends when they come. If they're all in a row, one after another...that's not good. So we want the irregularity to be irregular. As long as that's the case, eventually my heart is likely to settle down and cut it the heck out.


Meanwhile my Lyme doctor has stopped the antibiotic/antiprotozoan cycle I was in the middle of, and raised dosages of Neurontin and Ativan, in an attempt to calm my central nervous system down. I would have to say that's working, because right now, as I type, I am not actually awake. I am in some drifting drug haze somewhere apart from absolute consciousness. My heart seems to be doing fewer backflips. Or maybe I just can't pay enough attention to notice. I look like something from Lost in Space, and I am exactly that.

Saturday, November 27, 2010

Adventures With Mepron








I've been taking Mepron since the beginning of October. It's atovaquone, an anti-protozoal, meant to kill off the Lyme co-infection Babesia. As you can see from the pictures my son took, it's not exactly tasty. In fact, it's like eating paint -- it's gloppingly thick, fluorescent yellow,  and the taste is profoundly bitter with a gloss of artifical sweetener and artificial fruitiness.


In other words, it's absolutely horrible. And a bottle costs $1000.


But! I am responding to the new protocol. Babesia likes to hang out where there are red blood cells, and I've been having symptoms in my spleen and heart as it dies off. I've had some very good days mixed in here and there which are keeping me hopeful.


The bad days are still very bad. Trying to ride this edge of killing as many bugs as my body can handle but no more -- it's tricky. Some days I think it's too much, I've gone too far. I'm getting stabbing pain all over, I can't think straight at all, my heart is misbehaving, and I'm under a blanket of nausea. Those days I spend time in Epsom baths, eat a lot of probiotics, take Marinol, and play a lot of World of Warcraft. 


But then the holiday week comes up and I get a normal day, or two -- and I mean, I feel a glimpse of what it must feel like to be all the way healthy, and I don't even know how long it's been since I felt that way. Maybe never. 


I meant to make this blog more of an accounting of how the treatment is going, week by week. But I just haven't felt well enough, or clear-headed enough, to manage it. I'm hoping this is a bad hump to get over and things will be easier soon.


For the record, the protocol this cycle is Mepron, 10 capsules of artimisinin (from wormwood. I had a small moment of trying to convince myself it was capsulized absinthe and I was really in Paris in 1890, but that, uh, didn't work.), doxy 500 mgs BID, zith 500 mgs BID, nattokinase. That's MWF for two weeks, with Flagyl 500 mgs BID thrown in on the last two days of the cycle.


This Lyme treatment ain't for sissies.

Friday, September 10, 2010

Herxing

The Herxheimer reaction was discovered by a pair of brothers, both dermatologists, who found that when treating syphilitic patients, the patients got significantly worse after treatment began, and then got better. By worse, I mean nausea, drenching sweat, fever, rigor, vomiting. Interestingly, syphilis is an infection of spirochetal bacteria, just as Lyme is. And monitoring and evaluating the Herxheimer reaction is the way a good Lyme doctor figures out the next step of treatment.


I knew to expect some herxing once I started the course of antibiotics, but I tried not to think too much about it beforehand. Once it began, I searched all over the internet for patient stories, because I wanted some company, and some reassurance that this particular misery was expected, and more important, was going to have a happy ending. I didn't find much though. On forums, people post about herxing, others who have gone through it respond with compassion as they shudder at the memories, but nobody goes into much detail. So I am going to.


The first week, I had a marked increase in neurological symptoms. The bottom of my right foot was almost entirely numb, so that I limped when I walked, not that I was doing a lot of walking. My left arm felt asleep, my left thumb tingled all the time. I had shooting pains in my torso and up my right leg. Diarrhea. Joint pain in knees and elbows. Intensifying of brain fog so that it was difficult to make conversation. Bad fatigue, but that was nothing new. Achy all over. Periods of feeling a sense of impending doom, where I would sit on the edge of the bed, waiting for...I wasn't sure what. But it was going to be bad.


On doctor's orders, I increased my dose of Neurontin -- now I'm taking 200 mg in the morning and at night. This helps a lot with the numbness and with sleep. I'm so resistant to taking any kind of prescription meds, yet here I am, on ten of them. At least. And in that bad place of taking meds to counteract the side effect of other meds. But I'm telling myself that this is different, because the primary meds are the antibiotics that are killing the bacteria, not a drug that simply tamps down symptoms. The point of the Neurontin, and the Ativan, is to calm my central nervous system down enough that I can sleep. Because without sleep, there is no getting better.


In subsequent weeks, my arms and legs twitch suddenly and without warning, so that I look like a marionette. Nausea is especially bad on the days I take Flagyl. My short term memory is really impaired, making reading too taxing much of the time. My tongue and throat are covered with thrush. And fatigue -- I try to make the kids breakfast in the morning, fold/hang/do a load of laundry, and then I'm done. Until tomorrow.




Don't you just gag looking at that heap? That's only the first handful of the day, with more to come.


I'm writing this post for people who are facing treatment and want to know what someone else's herx looks like, and for myself, because once I get healthy I want to look back and think WHEW, glad that's over! And to complete the before-and-after record, here's a photobooth from this morning. 




So that's what herxing looks like. At least I don't have syphilis.

Thursday, August 26, 2010

Lyme report

I started my new Lyme protocol on August 9th, and the ensuing brain fog is still really thick, but I did want to describe what's going on for any readers with Lyme.


I'm taking Septra DS, Zithromycin, and Omnicef on MWF, twice a day. Plus Flagyl ThF, twice a day. Two weeks on, one week off.  Mega probiotics including Saccharomyces boulardii.


So far I have this to say: yikes.  All symptoms worsened, some dramatically so.  LD was completely correct to insist on my taking Neurontin -- she said my central nervous system was going to go nuts once on antibiotics and oh yeah, she was right. My sleep is messed up, short term memory a goner, shooting nerve pain all over, no energy at all.


Wheee!


At least this worsening seems to be following the usual path. I watched Under Our Skin with my sister-in-law last week, and as harrowing as the movie is at times, it was pretty wonderful to see people sicker than I've ever been rebound to good health.


Anyway, obviously I'm hoping that this period is over quickly and I'll be back to posting. At the moment though, I can barely string a sentence together.

Sunday, August 8, 2010

Finding the Food

Easily the most important moment in trying to make significant changes in the way you eat is the moment you buy the food. If high fructose corn syrup, Oreos, and Mountain Dew don't make it into your grocery cart, you skip that whole routine back at home of "Have it now? Save it for later? Maybe just one? Oh what the hell, I'll finish the box and be done with it!"


So to wean yourself away from processed food you can steer your cart around the perimeter of the store, hitting the vegetables, fruit, dairy, and meat sections and then straight to the checkout line. It's those inner aisles where the junk sits, and obviously if you don't go down them you can't lose your head.


That's what I did for years, ever since starting the Feingold Diet for my son back in 2002. But since then, there's been a genuine food revolution, and now it's easier than ever to get your food directly from the farm.  Now I'm lucky enough to get meat and eggs from Polyface Farm, my milk from Avery's Branch Farm (and when I say my milk, I'm not kidding. Thanks to Virginia law, I own two shares of a Jersey cow.) I get vegetables and fruit from our local farmer's market.


Three ways this is massively better than supermarket shopping: first, the taste is vastly superior for all the foods just off the farm. We're so spoiled by Polyface chicken that a Bell & Evans organic roaster seems flabby and tasteless now. Second, the nutritional content as well is shockingly better for the farm food. In a comparison done by Mother Earth News:

                        regular supermarket eggs              Polyface eggs
Vitamin E          .97                                                  7.37
Vitamin A          487                                                 763
beta carotene   10                                                   62
omega-3 fats    .03                                                  .71
cholesterol        423                                                 292
saturated fat      3.1                                                 2.31




Not just marginally better, eh? Polyface, with its pastured chickens rotating through new grass, crushes the competition, those sad chickens jammed in -- uh, I don't want to think about it. Did you watch Food, Inc. yet?

Third, and this is really the point of this post, making the change from supermarket to farm makes getting your food much easier, once you get used to the new habit. I pick up milk once a week, meat and eggs once a month, fruit and vegetables once a week. Yes, I still have to pop over to Whole Foods or Integral Yoga for stuff I can't get from the farm yet, such as mushrooms and cans of chipotle, and to support my serious cheese habit. But at least for nearly three-quarters of the year, most of what we eat comes straight from the farm, and the cries of happiness at the dinner table are much louder and more delirious because of it. 


If you're looking for a milk source, try here. For farms in your area that sell direct to the customer, look here.

Wednesday, August 4, 2010

Snack of the Week



Organic cherries and fromage d'affinois. Bliss.

Monday, August 2, 2010

Ode to Butter

While I do remember a period during my childhood when we had Fleischmann's margarine -- I was young enough to be mesmerized by its golden paper -- soon enough my mother was swept into the Julia Child craze and we had butter ever after. I did a lot of cooking during college, buttery cooking, and in the years after, still coasting along on Julia's influence, never veered into the world of fake spreads or margarines that were so highly promoted during the 80s and 90s. My loyalty to butter was completely about taste though. In those fat-phobic days, I figured if I was going to eat fat, it had better taste very good.


So it was a delight eventually to find out that butter is one of the healthiest things you can eat. Here's Julia Ross, in The Mood Cure:


Butter is so packed nutritionally, with its ten vitamins, ten minerals, eighteen amino acids, and eleven kinds of fat that it's hard to know where to begin. It's tremendously high in vitamin A, which it helps deliver to your eyes (night vision is absolutely dependent on an adequate vitamin A supply). Vitamin A regulates the female sex hormone progesterone too, providing many mood as well as fertility benefits. Then there's butter's butyrate, the fastest burning of all fats. This very special fatty acid is used extensively in your brain. For one thing, it serves as a base for making GABA, your natural Valium. It can also protect you from colon cancer and is used in medicine in precancerous colon problems to do just that.


And here's Sally Fallon Morell in Nourishing Traditions:


Fat-Soluble Vitamins: These include true vitamin A or retinol, vitamin D, vitamin K and vitamin E as well as their naturally occurring cofactors needed to provide maximum benefit. Butter is America's best source of these important nutrients. In fact, vitamin A is more easily absorbed and utilized from butter than that from other sources....Butter added to vegetables and spread on bread, and cream added to soups and sauces, ensure proper assimilation of the minerals and water-soluble vitamins in vegetables, grains, and meat.


The advice we've been getting for decades to avoid butter in favor of polyunsaturated oils is doubly poor because not only do we miss out on all the benefits described by Ross and Morell, but the fats widely used to replace butter are a nutritional disaster (I'll get to polyunsaturated oils in a future post). For list of healthy fats and a list of fats to avoid like the plague, go here. For more on the health benefits of butter from the Weston Price Foundation, go here.


I don't want to come across as someone who would urge you to eat stuff like lentil loaf in a single-minded focus on health. I'm all about the taste, and no question, butter is where the taste is. I've finally discovered, since it was my mother who was cooking Julia and not me, that the way top restaurants make their food so fantastic is just...butter. Lots and lots of butter. A really good dish can rise to unimagined heights with extra butter. One of my favorites is Matt Stone's Creamy Grits. It's a great dish for cold weather, and sending the kids off to school with full happy bellies, but I'm so devoted to it I made it even during this summer's heat wave. Usually I put a big handful of grated cheddar in there instead of the parmesan. And lots and lots and lots of butter.

Thursday, July 29, 2010

Hooray for high cholesterol!

That's right, bruthas and sistahs. Let me start by testifying that I have been eating what your average cardiologist would consider insanely massive amounts of saturated fat. Lots and lots of heavy cream. Whole milk. Gobs and gobs of coconut oil. Mountains of butter. In short, I've been gorging on all the things mainstream medicine and the government have been saying will kill me.


But last month I read Gary Taubes's Good Calories, Bad Calories, so now I have a clue about how to read a lipid profile, which is a good thing because otherwise I would be distinctly confused by what this one says. Total cholesterol at 265 is flagged as too high, as is LDL at 176. But triglycerides are 93, well within range, and HDL is 70, with an asterisk which says HDL >59 is considered a negative risk for coronary heart disease. So which is it, risk or no risk?


In 1977,  the National Institutes of Health funded five studies to look at how well LDL cholesterol and VLDL triglyceride numbers predicted heart disease. This was the first time any money had been put into looking at anything other than total cholesterol. The result? Writes Taubes:

In men and women fifty and older, Gordon and his collaborators wrote in the Framingham paper, "total cholesterol per se is not a risk factor for coronary heart disease at all." LDL cholesterol was a "marginal" risk factor.


HDL was the "striking" revelation. Both analyses confirmed that the higher the HDL cholesterol the lower the triglycerides and the risk of heart disease.....For those fifty and older, which is the age at which heart disease ceases to be a rare condition, HDL was the only reliable predictor of risk.


Later Taubes describes work done by Ronald Krauss in the 1980s -- Krauss has worked at NIH and Berkeley, and chaired the nutrition committee of the American Heart Association, so he's as establishment as they come even though he's not singing the mainstream song. Krauss studied LDL cholesterol, which can be subdivided into large, fluffy LDL and small, dense LDL. Fluffy is good. Dense is bad. 


Pattern A is dominated by large, fluffy LDL and implies a low risk of heart disease; pattern B is the dangerous one, with predominantly small, dense LDL. Pattern B is invariably accompanied by high triglycerides and low HDL. Pattern A is not. Krauss and his collaborators reported in JAMA that heart disease patients were three times more likely to have pattern B than pattern A. Krauss called B the atherogenic profile.


Well, if that's the case, why do we bother with total cholesterol numbers at all? Shouldn't we be looking at HDL and which pattern of LDL we have?


The answer to that is a labyrinthine tale involving stodgy bureaucracy, scientific ego, and agencies not willing to reverse course when a mistake, especially a large mistake involving very large amounts of money, has been made. I can't cover it in a blog post (and I'm only giving the Cliff Notes on cholesterol here as well). You'll just have to read GCBC (a seminal healthgeek work in any case) for the fascinating full story. But consider this. HDL is raised by eating saturated fat. In 1977, when the HDL news broke, new dietary guidelines had just been published by McGovern's Senate committee, guidelines that stressed avoiding saturated fat and eating more carbohydrates. The NIH had committed over $250 million to various studies attempting to prove that lowering total cholesterol, in part by eating little saturated fat, would lower risk of heart disease. The sudden revelation that high HDL could actually be protective, and you can accomplish that by eating steak and eggs? Very inconvenient indeed.


So we heard no screech of the brakes as the health bureaucracies realized the error of their ways and reversed direction. Nope. Instead we got more vilification of butter and cream, 26.6 million American adults with heart disease, and lipid profiles with contradictory messages. It takes decades for real science to become widely known, and longer if it has to swim upstream against a tide of money headed in the opposite direction. Don't even get me started on statins.


More on interpreting cholesterol numbers here.


We're going to have to keep an eye on this, LD said solemnly, pointing to my total cholesterol number. But I was reading the part where it said I have a negative risk, and smirking a little to myself, thinking about the Hollandaise sauce I was going to have on my eggs when I got home.





Wednesday, July 28, 2010

Visit to the Lyme doctor

Yesterday I took the train to DC to see my Lyme doc and go over the big stack of test results piling up over the last weeks. I'm posting this primarily for you readers with Lyme, so you can compare protocols and general hypotheses.


My bloodwork showed various indications of a deranged immune system, such as high TPO thyroid antibodies, low lymphs, and IgM positives to cytomegalovirus, HHV-6, and HSV. An IgM reaction comes after a new exposure, and LD (Lyme Doc) explained that those viruses are certainly ones I've been exposed to long before now, but my immune system is on hyperdrive, and confused, and running around trying to put out fires all over my body but not in a competent fashion.


I asked if there was any way to tell when I had gotten infected, partly wanting to know if it was before having children, since Lyme can be transmitted in utero. But LD said no. I could have gotten infected way before showing symptoms, or not -- that the only thing we know for sure is when my immune system got overwhelmed and started losing the battle.


I'd been reading about various protocols for the various coinfections -- babesia, bartonella, and ehrlichia, among others -- and that different antibotics and other meds are used depending on which coinfections you have. LD said that with my profile, she assumes I have them all. Such an overachiever for once! She thinks the current testing is unreliable enough not to be worth doing, and I'm happy about that because it ain't cheap.


What she plans to do is a kind of dance with the bacteria, hitting one and then another, retreating, BAM, retreating, going for another. This kind of slow intermittent antibiotic treatment is based on the work of Thomas McPherson Brown, who had tremendous success treating rheumatoid arthritis patients in this manner, with the idea that the body was not attacking its own joints for no reason, but because there was a devilishly sneaky infection (often mycoplasma) which was causing the immune response.


So this will not be carpet-bombing in an attempt to cleanse my body of infection. It will be, as I said, a kind of dance -- I'm picturing the tango -- where the antibiotics are gently killing the bacteria, then backing off, not scaring it into driving deeper into the tissues where it does more damage and is harder to reach. The idea is to train my immune system to take over the work, to give it some order and direction so that it will calm down and focus its efforts where those efforts will matter.


I have asked my super-organized daughter to help me make a system, because with my memory problems this protocol is daunting to manage. Monday, Wednesday, and Friday I will take Zithromax, Septra DS, and Omnicef, all twice a day. On Thursday and Friday, Flagyl. Nattokinase with the antibiotics because the enzyme "pokes holes" in the bacterial wall so the antibiotics will be more effective. Also adding 5000 iu of vitamin D3 and carnitine to the boatload of supplements I'm already taking. I reluctantly agreed to take Neurotin to calm my central nervous system down and hopefully get better quality sleep. After two weeks, I take a holiday of a week with no antibiotics or Nattokinase.


LD said to expect neurological and other symptoms to get worse, and then slowly better. My seat belt is buckled. I haven't put myself in a doctor's hands like this in many years, and I'm filled with fear and relief and optimism in about equal parts. I'm more than willing to go through worse if it's on the way to better, much better. I spoke to my 87 year old father this morning, who told me he takes five pills every day. That sounds pretty good to me. If I can get back to just five pills, I will be doing a tango down the middle of my street.

Thursday, July 22, 2010

Hooray for the colonoscopy!

I know. You're thinking, how can you cheer about getting five feet of tubing shoved up your bum? Do you get that much satisfaction out of doing the recommended over-age-50 check and finding out you don't have cancer? Well, no. Hardly.


You've heard how colonoscopies work. The day before, a liquid diet. In late afternoon, you start drinking a horrifically noxious drink, a brew of propylene glycol and sodium and saccharine, which brings on bowel explosions that rival rocket launches in their intensity. Boom! Go back to your book, turn the page, and BOOM! For hours, and more hours. The next morning, continue with four more glasses of the gaggalacious drink, many more trips to the bathroom, all of which left my colon in a state of pristine cleanliness.


Yes, of course, it's comedy gold, but Dave Barry already worked the territory so I'll just link him and get on with my story. 


So the process of the clean-out is nasty and uncomfortable. My anus felt like raw hamburger by the time I was done. As will Uranus. (sorry. so hard to find self-control.) It's not easy drinking so much horrible-tasting stuff without throwing up -- and I had it easy since my doc prescribed Half-Lytely, which is only half as many glasses to get down.


But. An unexpected thing happened. Late that night, after not eating all day and all the endless explosions, I noticed that I felt, actually, kind of good. Not all shaky from not eating, not fragile, not even dreading the procedure the next day. And in the morning, through the final stages of prep and going to the hospital, I was not anxious. I was, strangely, practically devil-may-care. Compared to how I was doing only the day before, facing a painless no-big-deal MRI, I was a different person.


I filled out the forms without feeling like it hurt my brain to remember my phone number. I joked with the nurses. The moment of the five-feet-into-the-bum was fast approaching, and still, I felt no worry in the least, confident that whatever happened, I could handle it.


I had been negotiating with my GI doc so as not to be given Versed, a drug I loathe. Don't need any extra memory problems, thank you, and I wanted to be awake to see unfolding events on the monitor, hear what the doc had to say, and admittedly, coast serenely on fentanyl. When she came in to see me just beforehand, the doc tried to tell me that just a little Versed would be OK, that most patients want the sedation because -- 


I interrupted her. I'm not scared, I said. At all. She looked at me curiously. "I see you're not," she said, surprised. "The woman before you was in tears at this stage."


I told her I actually felt better than I had in a long time, and she said that other patients had said the same.  


The reason, I have no doubt, is that the nuclear clean-out accomplishes what all the probiotics and antifungals and herbals I've been taking have not been able to --  the multiple bacterial infections in my gut were gotten rid of in a matter of hours. And the result is a dramatically clearer head, no anxiety, and an utterly different placement in the world. And just to be clear, this was before the fentanyl! 


The rest of the procedure went swimmingly. I was given an IV and heart monitors, wheeled into a high-tech room and hooked up to a blood pressure monitor, and got my first hit of fentanyl. In a few minutes I felt a little cramp and thought uh-oh! But the doc said she was already around the first turn -- and I hadn't even realized she'd begun. Apparently my colon is twisty and turny, like many women's, so there were some painful moments as she negotiated the turns, but she ordered more fentanyl and asked the nurse to press hard on my abdomen to stabilize my colon and those things helped a lot. 


I got to see my appendix, the entrance to the small intestine called the cecum, and the amazing tube -- so minty fresh! -- that is my colon. She painlessly snipped a few polyps that did not look dire, and that was that. Less than half an hour altogether. They pump you full of air to make room for the colonoscope, so afterwards you rip some epic farts which makes being wheeled down hospital corridors more amusing than usual.


So if you've got bacterial infections -- and if you've got brain fog, fatigue, or anxiety that's a distinct possibility -- look forward to your first colonoscopy.  You may feel tremendously better afterwards. I'm eating probiotics like mad, trying to get the good guys settled in before the bad guys have a chance to come back. If this effect lasts long at all, even the horrible drink will have been worth it. The public farting, the multiple sticks looking for a vein in my dehydrated arm, the Three-Mile-Island evacuations -- all worth it. I almost feel like myself again.

Tuesday, July 20, 2010

Clang-clang-bwang-blang-clang

MRI this morning. My new Lyme doc is looking for pituitary tumors, which would explain my hormonal instability, and I assume he is looking for infections as well. I thought it would better not to know a whole lot about what he is looking for, so I could focus my anxiety on the procedure instead of the results.


I used to be able to handle stress very well. In fact, I liked stress. I liked writing for deadlines, speaking in front of large groups of people without notes, whitewater canoeing, jumping horses. But now? Lying down on the sliding gurney with a washcloth over my eyes was enough to send my heart racing, put a cold sweat on my palms, and make me short of breath. Nothing about it hurts or is uncomfortable. But having to stay completely still for 45 minutes, flat on my back -- the idea of that seemed physically impossible, at least to my pituitary.


I took a moment to pull myself together, told myself that I was able to breathe even though my adrenals were screaming YOU ARE SUFFOCATING! and got through it.


I'll say this. It is inexpressibly better being a person who can handle stress than one who cannot. It changes the entire experience of being in the world. It makes living anywhere close to the present moment nearly impossible, except for the moments that are comfortably under a soft quilt, with a full belly, and nothing on the schedule. One of the worst parts of it is that the anxiety-prone are misunderstood by everyone who is not. There is no way for them to to get it. Which of course, in a situation like an MRI where you feel at the mercy of the machine and the tech, kicks the anxiety up a notch or two.


Before being slid into the tube, I asked the tech how long it would take, and if the pictures were of brain structures and not activity. I asked because I was planning to meditate, which would affect activity. He said, "Oh, your MRI is looking at structures only. There is another kind but you aren't having that one." But then he added, "Don't worry, I won't be able to see your thoughts!"


Honestly. I know I was on the brink of a panic attack, but I did not quit school after kindergarten. In my trips to the hospital lately, that is how people talk to me, often in sing-song voices, as though English is not my first language or even my second. There is an unstated assumption expressed in all communications that I couldn't possibly understand what is going on. It's past noon, I'm only able to drink and not eat today in preparation for tomorrow's colonoscopy, so yes, I am cranky. I'm handling condescension as badly as stress. 


The clanging of the magnets made meditation impossible, but oddly I found the noise a little comforting. It was so loud I couldn't really think of anything else, so I just counted clangs and bangs and the numbers were soothing even though doubtless I was miscounting as I went along, like a kindergartener, although I did not think "eleventeen" at any point.

Sunday, July 18, 2010

This is my brain on Lyme

So this afternoon I'm playing Settlers of Catan with my two children, eleven and nine years old. If you haven't played, it's a simple enough game in which you build settlements and cities and pick up resource cards depending on the roll of the dice. What makes the game a little more fun than other board games is that you might pick up cards on anyone's roll, so you're not just watching and waiting for your turn to come around.


In this game I am red. My settlements and cities are red, my roads are red. When the dice roll matches a numbered space adjacent to my red settlement and cities, I'm supposed to pick up a card. But I'm picking up cards for the orange settlements. Or looking at the dice, looking at the board, and concluding there are no matches for red, and picking up nothing, when in fact I should have picked up two or three cards.


In this version of Catan, Cities and Knights, there is also a third die that comes up in various colors, and again with the matching and the picking up of a different type of card, Progress Cards. My son told me later that since we are playing to win he doesn't think it's his job to remind me I'm failing to pick up my Progress Cards. I don't think it's his job either. But, and yet, however...apparently I cannot manage it on my own.


My conversation is not exactly snappy either. I'm asking a question about a rule, and both children are looking at me with bafflement. Eventually one of them realizes that I've been saying "knight" when I meant to say "robber." I find lately that when I have word retrieval problems, I am substituting some other nearby word and not realizing it until I see the confused expression of the person I am talking to.


It's just a game, says my daughter, because she worries my failures will make me sad. And oh yeah, they do. Of course it's not the loss of a game of Catan (though that burns!). It's the loss of who I used to be. Among other things,  a person to be reckoned with when it came to board games. Not a person whose brain skips and jumps and blanks out, unpredictably. A person who gets pity from her children because she loses board games so often, and not gallantly.


Here's some ridiculous optimism: I am looking at my Catan performance as a good sign, because after many months of taking some herbal drops to fight Lyme (samento and cumanda), my new Lyme doc asked me three weeks ago to stop them. So I have been naked against the bacteria for that long, and the neurological symptoms are notably increasing. Brain not working, various extremities numb and tingly, migrating joint pain, shooting pains here and there, and etc etc.


This is a hopeful development because it points to Lyme being the actual cause of my long list of health problems. The bacteria that causes Lyme hides in tissues, not blood, so it (and the other bacteria that hang out with it) is notoriously difficult to test for and diagnose. Having a positive reaction to treatment, whether it's herbal or antibiotic, makes the diagnosis clearer. Or, in this case, a negative reaction to stopping treatment. It's a Progress Card of a kind.