Saturday, June 20, 2009

The medical report

I saw my LLMD last week. I reported to him that, over the past few weeks, I'd seen slight improvement. Nothing dramatic, but I'd gone from my baseline of "20% of normal" to something like "25 - 30% of normal." (Where normal = pre-Lyme.) I had a little more energy (minus the four o'clocks), and I'd been able to read three whole books! A miracle!

Dr. R says that this is a really good sign. Generally speaking, he says that 30% of patients see some improvement after 3 months of treatment, 60% after 6 months, and 90% after 9 months. I'm right at the 9 month mark of treatment.

So since I'm feeling better, it's time to ramp up the treatment. It's a roller coaster--you treat, get worse, get better, and then increase treatment so you feel worse, then better, so you can increase treatment again.

So here are the changes to my treatment and other bits of news from my appointment:

1) Heavy metals testing. Got the results back. I have elevated lead levels--not surprising since I grew up next to a lead-mine-turned-Superfund-site--but not elevated enough that he thinks we have to specifically address it. This makes me nervous...I don't like the idea of elevated lead in my body, but I figure I'll address that concern after I make it a little further along the path towards wellness.

2) The four o'clocks. Dr. R suspects that this is a sign that my adrenals are still not functioning correctly. I've been taking ashwagandha, but it's not quite enough. So I've started taking 5 mg of hydrocortisone in the afternoon. While steroids are generally very bad for Lyme patients, I'm taking a very small dose that is only making up the difference between what my body should be producing and what it actually is. I've been taking this for a week now, and it's made the four o'clocks a little more bearable.

3) Viral infections. Remember a long time ago when I said I had high EBV and HHV6 titers? And that those chronic/reactivated viruses might have a role in why I was so sick? And that we hoped with Lyme treatment, my immune system would get strong enough to fight them down on its own? Well, given my relatively slow progress, it's becoming more likely that the viruses aren't going anywhere. So I've started an herbal antiviral, monolaurin. I'm supposed to ramp up the dosage over the next two weeks, depending on how I'm feeling.

Conclusion: My appointment was last week. I've been on the new meds since then. I think that the monolaurin might be causing die-off, or I'm just back in another Lyme die-off cycle. Because after feeling just a teensy bit better for a few weeks, I'm sliding back downhill.

The physical exhaustion is nausea-inducing. I have no stamina, and my cognitive abilities are slipping. Reading is harder. (So glad to have audiobooks.) Writing is harder. (So glad to have spellcheck.) Concentration is harder, and there's nothing that really helps with that.

So it kind of sucks right now. But I've been sicker than this before. And I made it back up the hill. So I'm trying to remember that. I'm sliding down, but I'll climb back up again. I hope.

Friday, June 12, 2009

Sidewalk strawberries

Today I checked my little strawberry patch by the sidewalk. My reward:

I made a small batch of oh-my-goodness chocolate ganache for dipping, but the strawberries are actually so good that the chocolate shouldn't be allowed to distract the tastebuds.

So I also made some peanut butter fudge, and will combine that with the ganache. Sugar party at my house. Right now.

Wednesday, June 10, 2009

Gardening delights

In the last few days:

I have harvested a few pints of strawberries from my little patch near the sidewalk. One particularly hot night, Nick and I skipped cooking and had cold museli topped with freshly picked berries. It was, perhaps, the best meal we've had in weeks.

One batch of lettuce is crying out to be harvested and eaten. I have at least three other varities that are growing more slowly, so we'll have garden-fresh lettuce for some time.

Two of my tomato plants are growing vigorously, while the third is looking stunted. Strange.

The city of Seattle now allows all recycling to go into the big green bin, so we no longer have to separate our glass. The glass bins could be given back to the city for recycling themselves, or residents could keep them. I have turned my bin, as well as that of a neighbor, into temporary raised beds. One houses two tomato plants (the healthy ones), while the other is nurturing a collection of herbs and butter lettuce.

The Douglas asters in my back yard are shooting skyward. One is taller than I am. They have not yet shown any indication that they will bloom soon.

The gigantic lupine near the driveway, planted just last year, is trying to take over the world. Some of the blooming spires are over five feet tall, and there are at least a couple dozen flower shoots. It's like a towering buffet for the bumble bees. I love to sit next to the plant and watch them zoom around, digging in the flowers and pushing each other around. This is a development that friends will no doubt find difficult to believe, given my lifelong phobia of bees and wasps. But the more time I spend in the garden, and the more I listen to the bees, the more my fear turns to fascination and awe.

Finally, one cool evening I took the time to sample the nectar from a torch lily. It was given to me by a neighbor who had many seedlings sprouting up in her yard. This spring it shot up in glorious color. The nectar was sticky and sweet and tasted softly divine.

Sunday, June 7, 2009

The four o'clocks

My current stop on the Wheel of Symptoms includes what I call "the four o'clocks." Because every day, sometime between four and six, but usually right around four in the afternoon, I crash.

Like, crash hard. I get dizzy, vaguely nauseated, and so sluggish I can barely move. It's nearly impossible to stay upright and awake. But if I take a nap--even a short nap--I wake up feeling worse than before. I'm not sleepy anymore, but my head hurts and I feel like I've been wrapped in heavy, wet blankets and left to steam in a locked car.

I've no clue what causes the four o'clocks, unless my cats are slipping me a roofie every day so they can get into trouble without me knowing. There's no predictable pattern. It doesn't matter what or when I eat, which medications I've taken, when I got up in the morning, how I slept the night before. Maybe my cats are drugging me. They're fairly crafty.

Wednesday, June 3, 2009

As the crow flies

Yesterday I saw two beautiful crows land in a neighbor's tree. I said hello and expressed my admiration for them. I asked if they had any wisdom to share with me. One of them looked right at me and said, "Must suck, not being able to fly."

When trying to get from point A to point B, it's rare that we get to travel in a straight line--as the crow flies. My journey towards wellness certainly hasn't taken me down the straight or easy path--but if it could have, then I probably wouldn't be sick.

Anyway, a lot has happened since my last substantial update, but there's not a lot to show for it. There have been a lot of subtle energetic shifts, both for me and around me. Rose, the Reiki and shamanic practitioner I see, came to our house to help us with this weird energy that I couldn't handle by myself. I couldn't describe what it was like, exactly, but Rose--after a puzzled moment--said, "It's like the ground isn't grounded."

Rose did some work, and we are planning to have an Earth despacho for the land on which our house sits. (I do not like to say "the property," since I don't think we actually "own" the land in any real sense.) There was some crow medicine moving stuff around, and I think the land/house/enviroment in which we reside, has started to breathe. Something stagnant or stuck has shifted, and I can feel tiny little movements as the energetic currents move and flow and find their true course.

The same has been happening for me on a personal level. All of it is very subtle, and if I tried to describe it, I'd sound even vaguer than I did above when describing the Earth energies. But some deeply rooted stuck energy is shifting; some of it is even finally being released.

I am feeling more grounded, connected, though there's still a long way to go.

Physically, I think I'm maybe possibly feeling a little bit better, too. I'd say that I've moved from the previous baseline of 20% of "normal" to something closer to 25 or 30%. Small, but it's there. I can't help but fear that this means I'm about to crash into another die-off/herx cycle, but I'm trying to enjoy what I've got.

I read a book. I did a few minutes of yoga. I planted tomatoes and peppers. All things that are small and simple, but represent a little forward movement. Even if every day between 4 and 6 PM I crash with a headache and nausea. Even if my sleep is restless and interrupted. Even if reading, yoga, and planting leave me far more exhuasted--mentally and physically--than is at all reasonable.

Yeah, it sucks not being able to fly directly where I want to be. But it is what it is, but crow medicine is that of magic, creation, and strength. And that is worth remembering.


As if I didn't need something else to motivate me in my journey towards health....

I really want to get back to both yoga and burlesque classes!