Saturday, February 28, 2009

I put a spell on you

Today I wasn't feeling great (big surprise), but I wanted to run to Fred Meyer and Walgreens to pick up a few things. The Ballard Fred Meyer, for those unfamiliar, is kind of like a super Wal-Mart. They're a full service grocery store, and the sell everything else from women's pajamas to furniture to fishing bait. So this store is big. And overwhelming. And very confusing to my spirochete-soaked brain.

So there I was, bumbling around Fred Meyer, when I realized that my left foot was kind of dragging instead of stepping forward. And that I had no idea why I was there or what I should do about it. I paused near the plumbing supply aisle and felt those little Rice Crispie snaps in my brain that mean I'm about to have one of my little "spells." Or, to be less quaint, what I think is a seizure.

So I got into gear. I hurried through the check out line and out to the car. I sat there for a minute, trying to figure out if I could make it home safely or not. Since we're only a few blocks away, I decided to try. I did make it into the garage, but that was about the end of the line.

I stumbled inside the house, leaning against the wall to drag myself up the stairs. "I think," I mumbled, "I need a little help." Nick came over at that point. I reached the top of the stairs, and tried to step into the living room unassisted. I nearly fell over; my left side was just not cooperating. Nick got me to the couch.

My speech capabilities at this point were...impaired. I can't really remember what happened in the next twenty minutes, but eventually I fell asleep for a couple of hours.

Fast living. Crazy fun.

Thursday, February 26, 2009

My heart aches, and a drowsy numbness pains my sense

Possibilities: 1) I have a cold; 2) I am suffering from exhaustion due to exertion the last few days; 3) bad Lyme phase; 4) nasty herx reaction. Whatever it is, I'm not happy about it.

I can't seem to get enough sleep. I'm sleeping 12 hours a day, plus naps. The night sweats are hitting at around 4 AM and lasting until I get up. I know I should get out of bed and change clothes. But it's so cold that i don't want to move. My pajamas are damp with sweat, and I'm shivering under the blankets and my face is clammy and slick.

My chest feels as if something heavy is pressing down, and my head hurts, spinning in dizzy confusion. My hands ache, each joint a little pinprick of cold fire. I should also mention that my butt totally hurts from the injections. Dr. R said I have the classic "Bicillin walk," which I suppose is some kind of penguin waddle. I am walking comedy.

I could go on...muscle aches, stiff neck, sore throat, rolling nausea. The neuro symptoms are pressing in like a heavy mist, and I'm stumbling around like some kind of drunken zombie. The only good thing is that I can shamble towards Nick, moaning, "Brains...braaaaiiiinnnssss!"

Keats and zombies. At least I have diverse interests.

Thursday, February 19, 2009

The Starfish Project

After switching medications last November, I was in possession of two nearly full bottles of prescription drugs--one of Rifampin and one of Omnicef. Both of these drugs are expensive, and there are people in the world who need them and can't afford them. To simply throw away the drugs because I couldn't use them was, in my mind, unethical.

In my case, I was in touch with another Lyme patient who needed the medications, and I gave them to her. (Later, I found myself the recipient of a wonderful gift of a month's Bicillin supply.)

However, most people don't know someone else who needs (and has been prescribed) the exact medication they have sitting, unused, in their medicine cabinet. So I wanted to let you know about The Starfish Project. About them:
The Starfish Project collects the unused "leftover" medication from patients in the United States who have stopped or changed their antiretroviral (ARV) therapy. All drugs have patient identification removed before they are sorted, labeled, and shipped to our partner clinics in Nigeria.

They collect not only ARVs, but also many other medications, such as antibiotics, antifungals, antivirals, etc. Pretty cool, no?

UPDATE 8/4/09: It appears that the Starfish Project is no longer operating. However, Aid for AIDS accepts donations of unused medication.

Monday, February 16, 2009

This same flower

My very first early spring iris bloomed today, with two others very close behind! And I can see just a spot of color where some crocuses are coming up. Soon the daffodils and tulips and all of the other bulbs I planted will be making themselves known to the world.

I begin with flowers and spring and sunshine to reassure you, my dear reader, that I am not always as gloomy as I appear in my previous post. Occasionally, but not always.

I think my initial herx reaction is slowly easing up. I'm beginning to feel a bit more normal, where "normal" = "normal with Lyme." And hopefully the Bicillin (and my many other drugs) will fight the good fight and one day normal will mean, you know, normal.

As far as the Drug Wars go, I haven't heard anything yet regarding insurance covering my Bicillin shots. But I've got several more weeks' supply, so I'm not worried...yet. And as for the Levaquin, I think I'm going to buy it from a Canadian pharmacy. Their generic price is the same as I'd be paying in co-pays anyway, and it get the insurance company off my back, and I don't have to switch to Cipro and Bactrim. I have yet to order from said Canadian pharmacy, but they look legitimate. They have actual stores in Vancouver, B.C., and they require a prescription, proof of identification, etc., so I don't feel too weird about ordering from their website.

Thursday, February 12, 2009

Out of Spoons; or, In which I gaze at my navel

I'm all out of spoons for the day. I thought maybe I'd stashed one under the bed or in my sock drawer, but no. I'm out.

It feels like there's all this stuff piling up around me... I should send that fax to the bank, pay the bills, make the bed, wash my hair, fold the laundry, put a pot of beans on to cook, clean the bathtub (and the rest of the house), respond to emails, pay attention to the cats... Or even just sit down and take my medications. Even that is such an effort...sitting down to a dozen or so pills at a time. Getting water from the sink. Eating.

I finally realized I've been dehydrated for the last few days because I don't have the energy or motivation to get something to drink.

It's a weird mix of lack of energy/motivation. Sure, my energy level is disastrously low, but I also have this weird blanket feeling of...nothing. I have no drive. Motivation. Interest. It's a blank. Nick often asks me if there's something wrong because I've been sitting on the edge of my chair, staring off into the distance. No, I say. Nothing wrong. It's just the distance between sitting and standing feels impossibly large. Or that the neurological and physiological effort it would take to make the decision to stand, then have my nerves do their thing in coordination with my muscles, well, there's just no incentive there.

There's a cloud between thought and desire. Knowledge and action. It's been growing for the last week. Numbing.

I believe that, were I to break out my fancy-pants hat, I'd say I am displaying flat affect and am experiencing derealization and/or depersonalization. I imagine this is probably due to a variety of factors--herxing, a lack of restorative sleep, Lyme playing Twister with my neurotransmitters, overuse of benzodiazepines in an effort to get sleep, la la la la.

In other words, I think I can point to a cause, and I don't think that I'm going crazy or slipping into depression. And I think that once this round of herxing and medication adjustment calms down, I'd guess that things will return to "normal," where normal = Lyme life.

Saturday, February 7, 2009

Injection 3: The Reckoning

Unlike many other sequels I can think of (Saw II - V, anyone?), I think the Bicillin is gaining oomph with each dose. Today I got my third injection. Since my first shot last Tuesday, I've definitely been feeling worse--typical herx (die-off) reaction.

My symptoms have been amped up. The night sweats are back with a vengeance; in general, my body temperature regulation is all messed up. I'm freezing, then sweating, then shivering, then hot again. During the day I can just keep shedding or adding layers, but at night I'm trying to sleep and my jammies get cold and clammy. And then I can't sleep, but I'm freezing and don't want to get out of bed. Le sigh.

The roving joint aches are back, mostly in my neck and hands. And my back muscles are stiff, sore, and generally unhappy. This is typical of my upper back (has been for 10+ years), but now my lower back is getting in on the action. I think it's probably because I'm holding myself differently to balance out the pain of the injection site.

Did I just say pain at the injection site? Right. I was, indeed, overly optimistic that every shot would be as easy and relatively painless as the first. Since the medicine is released from the muscle slowly, it's kind of sitting there in a little clump for a while, and whenever I bump my hip against something...well...let's just say there's a little more cursing around the house than usual.

But despite all my complaining, this is (I hope) progress.

In other sequel-related news, today Nick and I had our Reiki 3: The Reckoning class. OK, so it's Reiki III, but everything sounds better when you add The Reckoning at the end, no? So now we have another option in our tool kit for healing, and that's always a good thing.

Thursday, February 5, 2009

Disappearing a disease

Pamela Weintraub, author of Cure Unknown, has recently written a fabulous article regarding the current political battle over Lyme. I could summarize it, but she does a much better job explaining everything, so just go read it here.

Wednesday, February 4, 2009

The Lyme Basics

"Lyme disease" is confusing, controversial, and complicated. The phrase "Lyme disease" is often used to talk about infection with Borrelia burgdorferi (Bb) along with co-infection of other tick-borne infections (TBIs).

Dr. Joseph Burrascano writes,
I take a broad view of what Lyme Disease actually is. Traditionally, Lyme is defined as an infectious illness caused by the spirochete Borrelia burgdorferi (Bb). While this is certainly technically correct, clinically the illness is often much more than that, especially in the disseminated and chronic forms.

Instead, I think of Lyme as the illness that results from the bite of an infected tick. This includes infection not only with B. burgdorferi, but the many co-infections that may also result. Furthermore, in the chronic form of Lyme, other factors can take on an ever more significant role--immune dysfunction, opportunistic infections, co-infections, biological toxins, metabolic and hormonal imbalances, deconditioning, etc.

When I say "Lyme," I am probably using Burrascano's expanded definition, just because it's easier to type "Lyme" than to write "Bb and bartonella infection, with possible babesiosis, blah blah blah."

Still, it's a little sloppy, so I thought I should try to write a mini-primer for my friends and family who (luckily) haven't had to learn all this stuff themselves.

The bite of a tick can transmit many tick-borne infections (TBIs). What we usually talk about with Lyme and associated TBIs are the following:

* Borreliosis (infection with Bb)
* Bartonella or bartonella-like organisms (BLOs)
* Babesiosis
* Ehrlichiosis and anaplasmosis

Along with these diseases, patients often have dysfunctional immune systems which leave them vulnerable to chronic viral infections, such as Epstein-Barr, HHV-6, and CMV. (I have high EBV and HHV-6 titers.) Other opportunistic bacterial infections can be a problem, such as C. pneumoniae.

As chronic Lyme disease works over your central nervous system, it can create dysfunction in your hypothalmic-pituitary axis (HPA), which can generally mess up a whole bunch of stuff, from hormones to sleep to hypotension.

Like I said, it's complicated. But where does all of this intersects with my life?

Here's what I know:

1) I have tested positive for infection with Borrelia burgdorferi. My clinical presentation also supports the diagnosis of Borreliosis ("Lyme disease"). I am currently being treated for Borreliosis.

2) My clinical presentation suggests a highly likely co-infection with bartonella. Standard laboratory tests are highly insensitive at detecting bartonella/BLOs, so the diagnosis is a clinical one. I am currently being treated for bartonella.

3) Testing for Babesiosis is unreliable and expensive, so again the diagnosis is a clinical one. I show some possible Babesiosis symptoms. However, they may resolve with treatment for Borreliosis and bartonella. Additionally, the drugs used to treat bartonella and those used for babesiosis cannot be taken together, so you have to treat them one at a time. Once the bartonella is resolved, we'll explore the possibility/necessitity of treating for Babesiosis.

4) Ehrilichia...not sure about this one yet.

5) I do have high titers for Epstein-Barr virus and HHV-6. Hopefully these viruses will resolve by themselves once my immune system is stronger and not fighting off bacteria all the time. If not, I may have to to on anti-viral treatment.

6) My hypothalmic-pituitary axis (HPA) is so thoroughly confused right now. At least that's my guess. But since my symptoms are primarily related to the central nervous system, well, my brain is unreliable at best. I'm just hoping I don't have permanent damage and will get proper functioning back when we kill the off the infection(s).

7) Then there's the URL of my blog...mylifewithcfs. Because I was diagnosed with CFS by doctors who refused to test me for Lyme, and I started my blog before my Lyme diagnosis. Do I have CFS in addition to Lyme? I don't know. Maybe. I am hopeful that once I treat the infections, the "CFS" will no longer be an issue.

Anyway. Like I said, I tend to lump all this under the heading of "Lyme." It's not quite accurate, but you gotta give a girl a break when her brain is being destroyed by bacteria. Right?

Tuesday, February 3, 2009

My husband shot me

...and he was pretty good at it, too.

I got my first Bicillin LA shot this morning. Dr. R showed Nick how to administer the shot, and then Nick injected me under Dr. R's supervision. My helpful advice: "Just pretend I'm Uma Thurman in Pulp Fiction. But instead of my heart, go for my butt."

Anyway, I could barely feel the needle (first plunge = about 1/4 inch, full depth = about 1 inch), and then there was a slow pressure feeling when the thick solution was injected. Afterwards, there was a little soreness at the injection site. But no big deal. Hopefully all of my injections will be this painless. (I don't know if they get worse over time, as you jab the same general area three times a week.)

In other medication news, my insurance company is probably not going to budge on the Levaquin, and is likely to stop covering it entirely (instead of letting me pay the co-pay every 10 days, they'd make me pay full price for the prescription). And that could get pricy, even when ordering from sketchy online pharmacies. So I'm going to finish out my current stock of Levaquin and then switch to Cipro in combination with Bactrim.

The great thing about both Cipro and Bactrim is that, even if my insurance company wants to be a jerk about covering me, I can get a month's supply for $10 at Target, Fred Meyer, etc. And my normal copay is $10. So I'm good. I think I'll probably just go straight to Fred Meyer and bypass insurance. It will give them one less thing to red-flag me for.

Another piece of good news? I was given a box--a full box!--of Bicillin LA by a patient who isn't going to use it. Legal? Maybe not. But for $511/box, I'm damn sure going to take it.

Monday, February 2, 2009

Always be prepared

Hmmm...looking back over the post I started at six this morning when I couldn't's not as coherent as it was in my head. I'm leaving it up, though.

Anyway, tomorrow is The Big Day. I get my first Bicillin injection in the morning. And then, I am told, my butt will hurt for two days. At which point I get another shot. Entering a world of butt hurt.

So today I am preparing. I washed the car, picked up some things at the store, cleaned the house, filled my pill box, and other miscellenaous things that I won't be able to do if Things Get Bad.

And given some of my past herx reactions, things can get very bad indeed. Those of you who have read Cure Unknown or seen Under Our Skin know that with this disease, life often gets a lot worse before it gets better.

It's funny when people ask me how I'm doing, how the treatment is coming. Because it gets worse. And then it might get better. And then it might get worse again. I never know what to expect, where I am in the cycle of healing. So I don't have an answer to their question, at least not one they're expecting. So I just smile and say, "It's a journey."

Theories of infection

How and when and where I was infected with Lyme and the co-infections doesn't really matter. It won't change the treatment plan. But I'm curious. And I have theories. Which, because I can't sleep, I am going to share with you.

What we know: Lyme (caused by the Borrelia burgdorferi bacteria) and the common co-infections are transmitted by the bite of an infected tick. Some speculate that other vectors (fleas, mosquitoes) may be able to transmit as well, but we don't know. After initial infection, the bacteria can go dormant and just chill out, not bothering you, until your immune system is compromised or some other event allows them to flourish and multiply and make you sick.

Assumption 1: I know my current phase of illness began on Thanksgiving Day, 2007. I'd just moved into the new house and had been stressing and running myself ragged and all other sorts of things that are bad for me. I was not taking care of myself. My immune system was compromised.

Then on T-day I developed a sore throat. It may have been strep throat. Maybe it was mono. Whatever it was, it was the opening for Lyme and co-infections to get all excited and throw a frat party in my body. There's also potential involvement with other viral and bacterial infections, but I'm setting those aside for now.

So I'm thinking that I was infected at some past date, and the infection was activated (or reactivated) in November 2007. Which brings up the question--when was I bitten/infected?

A note on ticks: Many people who are infected with Lyme do not remember a tick bite. Deer ticks are very, very small and can bite, suck your blood, and detach without you ever knowing. That said, I've been bitten by so many ticks that one more bite would not register in my memory.

I grew up tromping through fields and farmland and it was common to come with at least one tick attached. It wasn't a big deal. I thought of them the same way I thought of chigger or mosquito bites. Annoying, but nothing that you remember.

So I know I've been bitten by ticks. I don't know if I was bitten in one of the more heavily Lyme-endemic areas (New England, Northern California).

Theory 1: I was infected while living in Oklahoma. Lyme is less common there, but is still present. And I certainly had the opportunity to be bitten. (Timeline: I left Oklahoma to attend school in Massachusetts when I was 17, in 1996.)

Theory 2: I was infected in Massachusetts (timeline: summer 1995 and school years 1996 - 2000). After leaving college, we lived in Tucson, and it is much less likely I was infected there. We did most of our outdoor adventuring in the desert, which is less friendly to ticks.

Theory 3: Northern California. We lived in the Bay area for about 20 months in 2005 - 2007. I spent much of my time leafleting on college campuses, many of which were in or near the suburban wooded areas so beloved by deer ticks. We also spent time hiking in the coastal ranges. During this time, I had several mysterious bites that I attributed to spiders. I also briefly developed what I know recognize as a classic bartonella rash.

Theory 4:
Vacation in Oregon, Labor Day 2007. We divided our time between beach walking and hiking in the woods nearby.

Thoughts: It's entirely possible that I was infected multiple times. Or I was infected with Bb (Lyme bacteria) at one point and with bartonella at another point. So I shouldn't assume that everything happened at once. Not that it matters now. But we're speculating, right?

My preferred theory: I think I was likely infected in Massachusetts.

I base this on a few incidents pre-full-blown-Lyme. The fall/winter of 2002 - 2003, I was sick all the time. The symptoms I complained of then were very similar to what I have now. Leading up to this time was a great deal of stress (two companion animals dying, my job was really putting pressure on me, social/friend explosions), and I was very vulnerable to illness.

Also, I remember thinking that perhaps I was clinically depressed because my brain felt like it was made of fog. I couldn't think clearly...everything was slow, like wading through quicksand. I suppose it would be properly termed "depersonalization." In retrospect, this clearly reassembles my worst experiences of "Lyme fog."

Finally, during this time, I mildly sprained my ankle. While the injury healed quickly, I had intense, off-and-on joint pain for months afterward.

I think that after months of illness, my immune system was able to re-boot and fight back the bacteria into a dormant stage...mostly. A few symptoms remained, but they could be explained away on their own.

And so the bacteria waited, patiently, hanging out in tissue, until the environment (my body) was suitable for another attack. A massive, take-no-prisoners attack. As such, I've had to call in my allies to fight back. My immune system has been occupied, and I'm rallying the resistance fighters to my side, along with help from Western medicine, CAM, and energy work.

I think I'll win.