Friday, October 31, 2008

Bacteria are reading my blog

OK, who told my resident Lyme bacteria that I was off the meds for a few days? Seriously, a mere four days off zithromax and mepron, and I'm feeling pretty darn bad. Especially that least favorite symptom of mine, "jangled brain".

I posted the other day that I'd be taking a 10 day break from medication. I've read that the Lyme bacteria are very sophisticated, bordering on scary intelligent, the way they constantly mutate their DNA, etc. I'm beginning to think they can read, too.

I know they use my eyeballs as their front porch, setting up lawn chairs, littering the area with candy wrappers and beer cans. I'm sure if I can see my blog, they can too, right? And now that they know the coast is clear, they're out in force, having a block party in my brain.

These symptoms surprise and concern me a bit. I understand the herx die-off reaction, and expect it to be nasty. But to feel this bad off meds can only mean the Lyme is still flourishing. Earlier today it was as bad as it's ever been, like last year. I was trying to read a paragraph my wife composed to send to our lawyer regarding my disability appeal, and I literally read and re-read it over and over, never making it past the first sentence. By the time I got to the end of the simple 10 word sentence, I couldn't remember the context.

Even though it's a beautiful autumn day here in Connecticut, I've retreated to the bedroom, where I can control and limit the inputs to my senses. This post has been a real work out for my poor brain (it's taken several tries), and the attempt at humor may fall flat, but writing it has lifted my spirits.

In my spare time I may devise a code to thwart the bacteria intelligentsia. Apparently "treatment holiday" wasn't subtle enough.

speaking loudly
I HAVE TO GO TAKE MY NEW MEDS NOW, HUGE DOSES OF MANY ANTIBIOTICS! OH BOY!

(sssshh.... kidding)

Monday, October 27, 2008

Treatment update

I wish I had some freesia in the house
I visited my LLMD today. We had a nice chat about my progress (which so far ain't much), and he looked at my (really neat) symptom chart. He is choosing for now to interpret my liver function trend as positive. The readings are high, but coming down.

Looking over my history, he's also pleased that I've not actually been on that many different drugs - just doxy, amoxicillin (useless), Rocephin, tetracycline, zithromycin, and mepron. Hmmm, listing those out, it sure seems like a lot, but he's pleased because he still has a lot of things he can try on me, either to pulse, or in case we run into a dead end, or if I have a bad reaction to a particular drug.

We had a laugh when he was describing his pulse methodology - hit the lyme for a while, then take a break, and repeat. I said, "sounds like Whack-a-mole to me." You know, that carnival game? Sad thing is, I don't think I've ever beat that darn game.

I'm all done with the zithromax, and tonight is the last dose of Mepron. After that, I get a 10 day treatment holiday (yay?) Then I go back on tetracycline 1500mg/day, this time for a month. Along with the tetracycline, we're adding in diflucan (100mg/day I think). I've not taken this before. It's usually categorized as an anti-fungal, but has shown promise in killing Lyme.

The herx pattern should be "interesting". I'm told the diflucan goes right to the brain, and peaks hard around four days into the treatment. And then probably the tetracycline will peak in weeks two and three, if like last time.

After that, ten more days off drugs, and then back to see the doc in mid-December. He wants to evaluate me next after I've had a treatment break.

Dr. P. gave a little insight into his view of my overall situation. He thinks my condition is "guarded", and that I'll likely need treatment for a year. He DOESN'T say I'll get better. I'm not sure if he's just being cautious, or if I'm one of his worser cases, or what. I'll just keep plugging away. I made sure he understood not to worry about how bad I feel on the various treatments - I'm willing to put up with almost anything to eventually have my life back.

Wednesday, October 22, 2008

Work


I haven't been able to work for over a year now. I'm very fortunate that my employer values their people. They've been very patient, holding my job all this time, waiting until I can return. Even so, there's a limit to everything, and I feel some time pressure to return so I don't end up losing my job. And then there's the obvious financial incentive...

Lyme is a roller coaster ride. Day to day, and week to week. The symptoms are ever-changing, waxing and waning. When I feel reasonably well for a few days, I contemplate trying to go back to work part-time. Then, usually within a day or so, reality sets in, and I realize it's not yet feasible.

I work in New York City, which is a long commute by train and subway. While I can do some work from home, I need to be in the office at times, and especially at first, since I've been out so long. Even though I'm having the occasional good day, most days I'd be unable to handle the commute (there's no way I could even walk across a crowded Grand Central Station), let alone being in a crowded open-space office environment. Fluorescent lighting, multiple conversations going on around me, required multi-tasking like speaking with someone, and then the phone rings. And then there's the actual work - specifying and managing complex computer systems. Stuff that used to seem routine, but that now just causes my head to spin.

Early in September I optimistically told my employer that while I still thought it was too soon, I'd try to return part-time starting in mid-October. I wanted to give them, and my family, some feeling of progress.

As the time got nearer, I was pretty sure it wasn't going to be possible, but kept an open mind, and tried to conserve my energy, though it doesn't really work that way. I was scheduled to go into the office, for the first day in over a year, on Thursday. The Saturday before, as a little test, I decided to help my wife pick up the vegetables at our local organic farm, where we buy a "share" annually, and get to come each week and fill up a couple of bags. It's a mile down the road, and is a place I feel comfortable with. I should be able to do this, right? I'll let my wife carry all the heavy stuff.

Well, within 10 seconds of walking into the barn, I start losing my brain. There are people! As in more than one person at a time. Oh goodness! They're all walking around, changing directions, I can't predict - they're bumping into me because I'm frozen in place. I'm afraid I'll be knocked over. There's a toddler running around, enjoying the sound of his own voice, fairly loud. Not bothering anyone else, I'm sure. But for me, with each loud utterance, I could feel myself spiraling deeper into a non-functional state. With difficulty, I made my way to a corner, and just stood there, gathering up the energy and brains to make my way back to the car.

OK, big surprise, I'm not ready for prime-time yet. So I called work a couple of days later and told them I couldn't come back yet. They understood, and are doing what they can, but I may end up losing my job. Not sure yet how it's going to play out. Whatever they have to do, I certainly understand.

This week I feel a tremendous weight has lifted. I wasn't really believing that I could return to work, but was trying to convince myself, in spite of daily debilitating symptoms. A formula for stress. So now, back to getting better over the long haul.

I think I'm on a good path to recover, but it's not going to happen on any timetable that I try to force. It's a process, and one that I can only control indirectly, by taking my meds, and doing some wellness stuff like gentle stretching and meditation. I really have no idea how long it'll take.

Thursday, October 16, 2008

Symptom tracking

My symptom chart (click to enlarge)
Zero: feeling good      Three: feeling horrible
I've begun keeping a simple spreadsheet and chart of my general groupings of symptoms:
  • Neuro "faded-ness": easily startled, sensitive to light, sound, smell, very slow brain processing, inability to filter multiple input streams, like someone speaking to me while the television is on, loss of coordination and dexterity, ringing ears.
  • Neuro "jangled": irritability and rage, blurred vision, insomnia, low-level unfocused anxiety, ringing ears here also.
  • Fatigue: zero energy, too exhausted even to think, or to get off the couch. Constantly leaning or sitting, very slow walking.
  • Pain: usually consists of headache, neck, back (large muscles), and occasionally hands and feet.
  • Numbness: tingling and lack of feeling in hands and feet, and also various involuntary twitches, that sometimes last for a day or two.
I simply fill in each day, each symptom group, with a value from 0 to 3. Zero is "feeling great". Three is rare, and horrible. (Hmm, I guess zero is pretty rare, too) I like the visual aspect, as it allows me to see at a glance, and to show the doctor, "how I'm feeling". I got the idea of the chart from fellow Lyme sufferer Chronic Triathlete.

This particular chart begins when I started on the Mepron/Zith combination. And I just fudged the early values, as I didn't have the chart then. But it's easy to see the spike in week three (ugh), and then some respite. And then a haphazard return of symptoms. Not sure how much significance to attach to all this, but the picture helps to put it in perspective.

I've got a new symptom, that I'm not charting yet. Memory loss. Doctors asked me about this before, as it's a common Lyme symptom, but I never had a problem with it. Now I'm not so sure. In just the past few days there have been several situations where I draw a complete blank. Like what did I eat today. I remember some of it, and know there was something else, but it's just GONE. And today I noticed in my day-by-day pill container that I'd only taken one zithromax yesterday, instead of two. I'm supposed to take one in the morning, one in the evening. What bothers me is that I have absolutely no recollection of taking them or not. Usually there'd be a teaser of memory that would allow me to piece events together, but this is just a blank. I'm a bit surprised that I'm still developing new symptoms.

By the way, I just viewed Chronic Triathlete's latest post. It's an informative video about the lyme spirochete that you may want to check out.

Thursday, October 9, 2008

Ticks and the outdoor life

I've pulled over a half-dozen tiny deer ticks off of my dog in the last few days. Only one was bit in, the rest were just looking for a tasty spot. Damn, I hate the little bastards.

I really don't like this feeling of being scared of the outdoors. When I hiked the Appalachian Trail in 2005, I slept on the ground for over 120 days. Even before that, but especially since then, the mountains and forests are my second home. They've always been my place of retreat, of respite, and it feels like a major part of my life has been taken away.

Once I get better and can hike again, I can do a few things to be more careful:
  • I normally sleep under a tarp. I think a zipped tent with a floor will be much safer. I suspect that's how I got bit last year - the tick has all night to be attracted to my body heat lying on the ground. I'm sure it's no great feat to climb onto my groundsheet.
  • I can take a little mirror, and check my whole body each morning and evening.
  • I may consider DEET. I've never used any kind of bug dope, as I don't like the poisons. Even before the Lyme, and my ultra-sensitivity to all kinds of chemicals, bug spray has given me headaches. But I wonder if I can get by putting a little bit on key areas, like the tops of my socks... I'm not even sure how well it actually works against ticks...
Unfortunately, for now at least, I don't even feel comfortable sitting in the woods, or in a field, or walking under leaves. When I pause while walking my dog, I squat so as to offer only my shoes to climbing ticks. This kind of tick avoidance becomes very impractical on a long-distance hike. I'm hoping a bit of my fear is overreaction due to neurological symptoms, and will go away. But on the other hand, I just can't imagine how bad it would feel to find out that a couple of years after my recovery, I got reinfected. Plus, I suspect that since Lyme may never completely be eradicated in the body, perhaps one's reaction to another infection is more quick and severe. I just don't know.

Monday, October 6, 2008

Feeling better

I have been feeling better the last few days. Apparently three weeks of herxing on the Mepron/zith cocktail was enough. I continue with these meds for three more weeks, and I don't know what to expect, so I'm really appreciating these good days.

Saturday I was able to remove a small window A/C unit, mow the whole lawn, go shopping at Walmart, and take the dog for a longer-than-usual walk. And I didn't crash at the end of the day, either.

I'm amazed reading that last paragraph. For weeks now, I haven't been able to even consider doing one of those things.

Tonight I started the new bottle of Mepron (the old one had a few extra doses beyond the three weeks). I don't know if this is a more recent vintage (what a lovely YELLOW bouquet - yes, it even tastes yellow), but it seemed stronger. Within 5 minutes of taking it, my head was flying. I found myself fumbling silverware as I tried to eat dinner, and getting confused by the changing scenes on the television. And now my ears are ringing more loudly again.

Here's hoping I don't have to herx anymore on the Mepron, and that I get a few weeks of "good behavior" from my body.

Sunday, October 5, 2008

No ground beef

Moo
Early this summer, my holistic doctor prescribed some supplements that contained dessicated bovine (cow) adrenal glands, and other gross parts. He explained that my symptoms of extreme fatigue, sensitivity to light, sound, the confusion of too much input, and my shock-like startle reflex, all pointed to the adrenal glands being shut down. He said that due to my illness, the myriad tiny stressors we all encounter daily cause a fight-or-flight response. Except that I can neither fight nor flee.

I had been on this for about 5 weeks, and had seen some lessening of the frequency and severity of my "episodes". I don't know if it was the supplements, or just the waxing and waning of the lyme cycle. Around this time, I had my initial visit with my LLMD, and he requested that I stop taking what he called "ground beef". (He's got a very dry sense of humor). His main concern was that these animal parts contain steroids. And steroids are strictly contraindicated for lyme patients.

I complied with my LLMD's recommendation, even though Dr. D (my holistic doctor) disagreed that these supplements were harmful. He graciously worked around it, trying other non-animal supplements.

So, again, I don't know if it's cause and effect, but I've noticed a gradual increase in episodes since I've been off the adrenals. I'm happy with the approach - instead of attempting to support my adrenal glands, which are being wiped out from the illness, we're attacking the lyme. Once the lyme is gone, or greatly reduced, the adrenals should function again. In the meantime the episodes may interfere with my attempt to return to work part-time in a couple of weeks. [fingers crossed]

Thursday, October 2, 2008

Mepron: week three

Monday:
I woke up early to be on time for my appointment with Dr. Diamond. My son drove me, as my wife had a busy day at work. I really wish I could drive myself - it would be nice to not inconvenience my family in this way. But I get so fadey sometimes that it wouldn't be safe. I restrict myself to very short errands when I'm having a good day. (Fadey: very slow brain processing, and overly affected by light and sound, lack of muscle coordination)

This is Dr. Diamond's first day in his new office, which is a couple of miles down the road from the old place, and nicer. The windows open and there's fresh air circulating. Even though the road is busy, the treatment rooms face the side and rear, which is leafy green forest. Nice.

The doc does a nice thing in the waiting room. There are the usual "who cares" magazines, but he also has a table with a jigsaw puzzle. I actually like to make sure I'm early so I get a chance to work on the puzzle. Very clever. So, I brought him a new puzzle as an office-warming gift.

But I barely noticed all this in real time. I was so faded as to be semi-catatonic walking in. Dr. D was talking to someone else, and after a moment noticed I was having trouble and ushered me into the treatment room quickly. He said I was "white as a sheet". There was classical music playing throughout the office, including a speaker in the room I was in. He knows me pretty well, and proudly pointed out that he had specially installed separate switches for each speaker, and he turned it off. We joked that I'm kind of strange - that in my current lyme-state, if someone were to ask me "what kind of music do you like?", I'd answer "the turned off kind".

Dr. D got out his TBM manual to remember the specific ways to check certain major energy centers, of which he said there are five. Using muscle testing, he determined that four of my five centers were completely shut down. I recovered somewhat, slowly, as he worked on me. Dr. D's explanation for my symptoms is that the Mepron / zith cocktail is really kicking in now.

By the time my son drove me home I was fairly well recovered, though I still had no extra energy. But by late afternoon I was able to take my dog for a short walk. And then I crashed again when I got home. Oh well, such is life with lyme.

Tuesday:
I felt fine in the morning. Then, as the afternoon progressed, I got extremely fatigued and sore - mostly large-muscle back pain. I didn't do anything to deserve this - I just sat around all day, using ice on my back, and did about 10 minutes of gentle yoga.

Wednesday:
Ugh. Back to extreme fatigue. At one point during the day I found myself on the floor for some reason - I can't remember why, perhaps to pick something up, or to give the dog a scratch. But I didn't have the energy to get up, so I just lay there, planning to get up, for about 5 minutes. Everything's painfully slow. And lots of back pain, and some mental issues as well.

Before I got so tired, first thing in the morning I ran a couple of errands, including picking up my prescription refills of Mepron and Zithromax. I should have known that little activity would knock me out. But I like to try and do stuff, to get out just a little, regardless of the consequences. And it was such a lovely day, too.

Thursday:
Time for my every-few-week blood tests to confirm that the organs are tolerating the meds. But at the hospital they pointed out that I should be fasting. D'oh! I didn't notice the order for a lipid test. And I'd already eaten and taken the morning meds.

Well, this little wrinkle pretty much froze my brain. I could just feel my intelligence draining away as I stood there trying to figure out what to do, leaning hard on the hospital counter. The nurse came to my rescue and suggested I simply do the rest today and come back tomorrow for the lipid test. Ah yes, very simple. OK. But by now I'm pretty confused, and sitting in the waiting room is very difficult with the television on, and people sitting nearby wearing scented deodorant. I wanted to leave, but didn't know where else to go, and it had to be somewhere I could sit - and quickly. So I just stayed put.

I recovered enough (or was stubborn enough) to stop at the library, which is right on the way home (fortunately I live less than two miles from the hospital). I checked out Healing Lyme, and another lyme book. I'd heard about these, but never read them. Time to give them a look.

The rest of the day I did nothing but read, and I did recover enough to walk the dog. I was pretty lucid all afternoon and evening.

We had, among other things, baked potatoes for dinner. You see, early this summer I had some potatoes that grew eyes all over them, so I just sort of tossed them near the compost heap in the yard. They grew into large plants, but I didn't do a single thing to manage them. Just left 'em alone. I figured there must be potatoes out there by now, as the cold nights have killed the foliage. But I haven't had the energy to dig them up, until this afternoon.

It felt wonderful, having enough energy to play in the dirt for a few minutes, breathing in the cool autumn air, and the maple trees all turning pretty colors. Hmm, guess I better go check for ticks...

That concludes week three of the Mepron.