TRADING OFF GETTING OFF FOR GETTING ON

The latest installment in the "getting off" series.



More pills than I'd like to be taking, but less than I was taking before.

Four months ago, I stopped taking my antibiotics, my Lyme-killing herbs, my Ayurvedic liver support pills, my twice-daily injections of the blood thinner heparin, and the three doses of Cholestyramine, which was killing my appetite and making me constipated. I cut out iodine and B12 tablets and drastically reduced Vitamin C, multivitamins, and enzymes. I put away out other pills and powders whose names I can't remember now. I'd been taking each of these things because they each helped with specific, hellish symptoms of Lyme. Each pill or injection was warding off some aspect of misery. All together, however, they added up to so much medication that it was difficult to leave the house, eat meals at the time others were eating, or have a phone conversation without interrupting it to swallow something.

The only way to know if I could have a normal life (or a more normal life) was to plain-old stop taking stuff. But stopping taking stuff when that stuff has saved you from being too sick to walk or read or watch TV--well, it's frightening.

"Congratulations!" my doctor said. "This a big step for you to take."

"This is courageous!" said my naturopath.

"It's really, really brave," my mom said. (I was staying with my parents while I went through these medical adjustments.)

I was ready for the Powers That Be to reward me for my bravery. I was thinking all this medicine for so many years might have even cured me of Lyme. I might just not need it at all. I'd have to wait and see.

For about a month, I was OK.

Then I had trouble sleeping. I got back on the herbal protocol for Lyme. I felt stiff and fatigued getting out of bed in the morning. I ratcheted up my Vitamin C. I was better, and then worse again. I added a third herb for Lyme.... Still, I resisted letting things get too fancy. No injections, no appetite-killing drugs, no enemas.

I landed at more or less an equilibrium of feeling more or less how I had while taking a zillion medications a day, only now I was taking six or seven.

Then a tick bit me--which was testimony to how reality, unfortunately, is  not a double-blind scientific study. I decided to take antibiotics for the tick bite, and things got zooey for a few weeks. When those weeks were over, I went more or less back to where I'd been before the tick bite.

That is to say, in the ballpark of more or less; approximately more or less. I was in a different universe from being depressed and fatigued from antibiotics. I wasn't, however, in the universe of feeling ready to move back to Seattle and into a new house as a newly single person. I had my plane ticket back to Seattle, I had a house my tenants had just vacated waiting for me. I'd scheduled movers to take my things from my ex boyfriend's apartment, and I'd told all my friends I was coming back.

And I was scared, because I simply did not have energy for this looming situation.

Thirty-six hours before leaving for Seattle, something clicked. Fatigue, I thought. Thick blood. So I added in one more supplement, lumbrokinase, which is an enzyme that thins the blood. My energy shot back up immediately.

So now I'm back on the Boluoke brand of lumbrokinase. It's not heparin, which I took for years and requires an injection and left bruises all over my body. I can buy Boluoke on Amazon, meaning it's easy to keep in stock.

The reality is my experiment of getting off as many medications as possible is not going as hoped. The reality is being brave doesn't mean you get what you think you should get.

Given reality, I'm glad to be back on Boluoke lumbrokinase. It hasn't cured me of every last Lyme symptom, but I'm in Seattle now and handling the chaos of moving and setting up house with more energy and ease than I had imagined was possible.

LUCKY BREAK

Igenex Labs called on Friday to say the tick that bit me three weeks ago was negative for diseases. Or at least, negative for all the diseases Igenex tests for, to the best of its ability. The last three weeks sent me on a weird psychological journey, and it took more than twenty-four hours for me to start to feel I could trust these results.

 

Science is at best shaky, at worst utterly unreliable, or so my experience has gone over the last fifteen years. Not mention how for these last three weeks the universe seemed like one gargantuan tar baby. And now, maybe not. At any rate, I stopped my antibiotics. I am packing to return to Seattle, where there are fewer ticks, and less Lyme disease. And I'm feeling some physical relief to be off pharmaceuticals-- I can now carry on a conversation before 12 noon, and when I dance my brain and legs are able to communicate with each other. 

 

Nevertheless, any illusion I once had of safety has been stripped away. Where does that leave me? Be happy when I get the chance. Last night, I stayed out tangoing a couple hours longer than I'd planned. I'll have to just declare that something to dance about.

 

 

 

 

 

 





THE NO-TICK-NEWS BLUES

(I wish I knew who did this illustration, so I could give credit!)

It has been three weeks since I found a tick had bitten me, apparently while or right after I was swing dancing in urban Washington DC. The next day I FedExed the tick to Igenex, Lyme medical labs extraordinaire, to be tested for Lyme and other diseases. I started taking antibiotics immediately, and thought I'd hear back from Igenex in one week's time.

But as of this moment, there's still no word. The receptionists at Igenex (I've now called several times) have told me it may take up to three weeks, and taking into consideration that today is July 4th, Monday July 8th is the most likely day I'll get my results.

Meanwhile, the doxycycline and biaxin Dr. Marty Ross prescribed have put me right back into the dark heart of Lyme disease-- fatigue, stiffness, psychological misery, and brain fog. Samsara, Sartre, Sisyphus, the works. All this could be die-off from the Lyme germ that took up residence in my body some fourteen years ago. Or it could be the result of killing off the new infection. Without the lab results, there's no way to know.

Four weeks on antibiotics is the most conservative approach to prevention after a tick bite. Much as I'd like to be in a happier place, I decided yesterday in my appointment with Dr. Ross that I'd keep taking the antibiotics, given the lack of information. Even if the Igenex results come back negative, I'll have no regrets. This isn't the time to take chances.

SMALL FORMS OF BRAVERY

On Tuesday night I wore this dress swing dancing. I came home drenched in sweat, peeled the dress off, got in the shower, and found a tick lodged in my armpit. Once I had comprehended that yes, this had actually happened, I found my old antibiotics for Lyme, which I'd stopped two months before, and took a dose.

By Wednesday night I was on megadoses doxycycline, which my doctor prescribed to prevent a new infection. I was more or less accepting the fact that after six years of partially successful treatment for Lyme, this was all happening. The Ground Hog Day of Lyme disease.

Thursday night is tango night. I'd already washed the dress, and had moments of doubt about going to tango at all. Was it too much now that I was on antibiotics again? Would all the ticks in the universe be pulled to me once I stepped into a dance hall? Would this dress bring me more bad luck?

But I knew I couldn't let myself be spooked. I love this dress. I bought it from a local designer at the Eastern Market last Saturday because it would work for both swing and tango, and I had planned to get full use out of it. Plus, last night there was a special teacher, from Buenos Aires, giving a class in exactly what I needed to learn.

I put on the dress, and I told myself that when people asked me how I was doing, I would simply reply "great!" I would say nothing about ticks or Lyme disease or antibiotics. Fake it till you make it.

I stood in class, wearing the dress and my heels, listening to the teacher was explain this special form of partner connection that is popular in Buenos Aires. I felt an insect crawling on my leg. I looked down and saw it was one of those pretty, winged, teeny delicate green bugs whose name I don't know. Definitely not a tick. Still, I was merciless about brushing it off my leg.

Tango requires concentration, enough concentration that it drives all thoughts of illness out of my mind. By the end of class I was no longer thinking about insects or bacteria or bad luck.

After class, I danced for ten minutes and then changed out of my heels to walk home, to get to bed early, because I'm on antibiotics. I was heading out the door when Francisco, who is an excellent dancer, stopped me. How could I have changed out of my dancing shoes already, when he was about to ask me to dance?

This was practically an act of charity on Francisco's part, since he's been dancing for four years and I am a beginner with three months' experience. Meaning it's heavenly for me to dance with him and probably a little annoying for him to dance with me. I rushed to put my shoes back on and we danced the next three songs. And I was happy, truly happy.

YOUR TICK CAN NOT BE RETURNED TO YOU

"Once your tick(s) have been processed, the tick can not be returned to you" -from the IGENEX labs mail-in tick form.

My tick will arrive at IGENEX this morning, to be tested for Lyme and all possible co-infections. In my appointment with Dr. Marty Ross yesterday, he said it was good I took quick action on that, and good I took my left over Biaxin (Clarithromycin) right after I removed the tick.

(If any of this is confusing, read the previous post.)

I am now taking doxycycline, because it should prevent Lyme and also Erlichia and Anaplasma, which the tick (or my tick, in IGENEX's view) may well have given me.

Dr. Ross also asked how swollen my tick was. This was something that in my dumbfounded state I hadn't considered, but once Dr. Ross asked, I realized my tick was not engorged at all. It was as flat as, well, a tick.

From that, Sherlock Holmes, at least, would deduce the tick hadn't been biting me for long. Good.

Sherlock might also deduce the disgusting critter might have actually crawled onto me while I was swing dancing, or while I was in the car coming home from swing dancing. Two days before, my father had driven the car to a place in Maryland where there are ticks. (This is a place I do not go, primarily because there are ticks.)

At any rate, the absolutely most likely scenario is this tick hopped onto a nice, warm mammal in exurban Maryland or Virginia, and that cozy mammal hopped onto fossil-fuel transportation into the city, where the tick decided to explore a bit, and then, maybe dizzy from swing dancing, it took refuge in my armpit. And now it's won a free, one-way trip to California and an inside view of IGENEX labs.

***

YES THIS IS HAPPENING

Last night I was bitten by a tick. I saw the tick in my armpit at 12:30 a.m., while I was taking a shower because I had just gotten home from swing dancing.

That last was in italics because I just want it on the record that as far as tick bites go, I do not tempt fate. There is no hubris when it comes to me and ticks. I do not hike, or camp. I swing dance and tango, and only in urban places. I am 99.9% urban. The closest I get to nature is a couple of flower beds next to a bricked over patio.

I also walk my dog in an urban cemetery, which is wedged up against the city jail, and also close to something that could be called "woods" but certainly doesn't host any deer. And I didn't take Cleo to the cemetery yesterday, the day I got bitten by a tick. I walked Cleo around city blocks. I spent ten minutes with my nephew in his front yard, next to a traffic-filled street. And I went swing dancing in a room with closed windows and not so much as a potted plant in sight.

And there I was, at 12:45 a.m., putting a tick I'd just pulled out of my armpit into a plastic bag. Then taping the plastic bag to the fridge so no one would throw it out by accident before I could overnight it to Igenex labs.

I stopped taking antibiotics for Lyme a couple months ago. Three weeks ago, however, my symptoms started creeping back and I went back on "containment" herbs. I had been trying to get my head around the idea that after six years of treatment, I apparently still have Lyme. Now I'm trying to get my head around how I got bitten by a tick while swing dancing.

Given that I didn't sleep all that much last night, this might not be the most coherent of posts. But here are some thoughts I've been having today:

Yes, truth is stranger than fiction.

If I believed in an all-powerful God, I'd be his sworn enemy now.

Huh?

This is almost too weird for me to be upset about it.

Thank god I have a good doctor (Marty Ross) who has scheduled a phone appointment for me today, although he normally doesn't see patients on Wednesdays.

Yes, I will buy those really cute but comfortable tango shoes I was thinking were an extravagance.

I'm glad I had some left over antibiotics to take at 12:45 a.m.  I'm glad for Igenex labs and overnight Federal Express.

I'm glad my mom was around (as I'm visiting my parents' right now) to be a generally sane presence for me today.

This tick might not even carry Lyme disease or other illnesses. I will know in about a week.

Deep breathing is good for your immune system.

THIS IS WHERE I GOT BITTEN BY A TICK

Pretty, isn't it? This what you see from the porch of my parents' weekend house. I was bitten here in March of 2000, and in all likelihood once before then, probably when I was teenager. I haven't been back since I moved to Seattle in 2004, both because once I was in Seattle I began to suspect I had Lyme disease, and because I have terrible, kill-me-now allergies when I am inside the house, which is built on top of a cache of mold of WMD proportions.

With hindsight, I know it wasn't just the tick bite that brought on all my health problems. Although I undoubtedly had Lyme disease, it took going to Mexico, where I got parasites and exposed myself to tons of pollution, to set it off. I also now know I have a congenitally weak liver (see my posts under the label "Shoemaker protocol" for more on that), which I'm sure contributed to the downturn.

Still, I've avoided the place until last Friday, when loneliness got the better of me. My entire family, minus me, goes here at least a few times a year for the 4th of July, etc. My parents go every weekend, and in the summer my brother and his family usually join them. And last week, after two weeks of living like a hermit, I decided I just had to go so I could be with my family-- mom, dad, bro, sister-in-law, neice and three-month-old nephew. It was just this overwhelming desire to be part of things. I decided it was worth the risk to go for the afternoon. I stayed in or right next to the pool, where it's paved, always wore my shoes when I cross the grass to the house, and no, I didn't get a tick bite. I also had a lot of fun.

I think it's worth a repeat. Today I will also order Daminix, something I've been meaning to do
for a long time, because it reduces the risk of anyone there getting exposed to Lyme, and although my family seem oblivious to it, I don't want them to be running that risk either.

So here's what happened when my two and a half year-old niece, Maggie, painted her toes (nail polish compliments of the other grandmother!)