In Search of Wellness

A new and improved pain chart!

2010-04-12T11:52:00.000-07:00

If you've ever been to the doctor because you're in pain, you have probably been asked to state your pain level on a scale of 1 - 10. The doctor usually says something terribly helpful like "ten is the worst pain you could possibly imagine."

Really? Because my imagination is REALLY PRETTY GOOD. Because of this, I've discovered that I tend to under-report my pain level. I figure that if 10 is something like being flayed in a pot of boiling oil while being burned at the stake while a pear of anguish is slowly opened, well, then my horrible back pain is probably something like a 5. Because I've read about the Spanish Inquisition and watched a lot of horror movies and so I can think of some really sick stuff.

So the pain chart has long been a source of humor in our house. Which is why I am so very pleased to present...

A new and improved pain chart! (Click it! It's funny! And awesome! And awesomely funny!)

I want the author to be my new bestest friend in the whole wide world. Because she is funny and will make me laugh.

All Clear on the Chestern Front

2010-03-21T12:28:00.000-07:00

So my chest CT is clear. No problems there. Which is very, very good. I don't want to have to give up my PICC line until it's time to stop the ceftriaxone.

And, yes, I realize that the horribe pun in the blog post title means that I Am Going To Hell.

New medications and the battle for a good night's sleep

2010-03-02T15:08:00.000-08:00

I saw Dr. R (my Lyme doctor) today. And since I haven't posted here for a while, I've got a fair amount to report. I'll start with the good news.

The good news: I'm doing better. I know that every time I say this, I end up crashing. But for right now, today, I'm at about 35% energy-wise, 45% neuro-cognitive ability. This is the best I've been since getting sick in November 2007. So it appears that the Rocephin has been doing its job. And my labs are still beautiful, so my body is handling the medication load just fine.

So because I'm doing well, it's time to push a little harder. Of course. So I'm going to be doing 2 grams Rocephin twice daily, four days on and three days off. I'm stopping the Plaquenil today.

In two weeks, after I've adjusted to the Rocephin change, I'm stopping the Diflucan and grapefruit seed extract and going back on Flagyl (500 mg, twice daily, five days on and two days off). The doxy is staying the same (400 mg/day). I'm also going to stay on Cipro (for bartonella) for another 1.5 months. And I'm quitting the monolaurin (taken for EBV and HHV-6).

And the most exciting thing of all? I am trying out private yoga classes. Regular classes are too fast-paced, but the restorative classes are too slow/easy. So I'm working one-on-one to establish poses that I can do (particulary with my PICC line in place) and remind my body what the proper alignment is said poses. I went to my first lesson yesterday, and it was a really good experience.

And now the bad news. Holy morphine, Batman, I hurt like a son of a biscuit. The joint pain has receded and for the moment is only bothering me occasionally. The deep bone pain is annoying but that's about it. The back/neck pain, however, is like to drive me mad. I'm currently taking 20 mg Kadian (extended release morphine) at night, along with 1200 mg gabapentin, and it's barely touching the pain.

So I'm going to go up to 1800 mg gabapentin and see if that helps. If not, I'm going to have to talk to my pain management doctor to see to do next.

The pain is, naturally, interfering with sleep in a major way. At the same time, the trazodone hasn't been helping. I'm making an appointment to talk about what, if anything, I can/should do about it. I've also started acupuncture, and I'm hoping it will help.

Finally, a new symptom has popped up. I've felt very short of breath on and off for a while. Sometimes during activity, sometimes when I'm lying in bed. There appears to be no pattern. So just to be on the safe side, I'm going to have a chest CT tomorrow morning to rule out a possible pulmonary embolism. With the PICC line, there's the chance of small blood clots forming at the tip of the line and breaking off and entering the lungs. This, as you might guess, is not good. Thus, the CT.

There are many possible causes for shortness of breath, including thyroid and adrenal issues (and babesia and the bizarre mess that is Lyme itself). So there are many less severe possibilities than pulmonary embolism. Still, better safe than sorry and all that.

My night is colored headache gray

2010-02-04T18:47:00.000-08:00

I'm still wrestling with sleep. My pain management doctor has switched me from hydromorphone to oxycodone at night. I fear that the pain meds are still acting as a stimulant, though.

I've also stopped taking clonazapam due to possible drug interactions. In its place, I've been prescribed a very small dose of trazodone. Trazodone is a tetracyclic antidepressant that is also used to treat insomnia. Because, apparently, drowsiness is a common side effect. I am starting the trazodone tonight.

I very much hope it works, because I'm like the walking dead here. I've been able to get maybe six hours of sleep in the last two days, and I'm exhausted. Amusingly enough, I've just started the new Charlie Huston novel, Sleepless, a nice little post-apocalyptic story about a plague that prevents people from sleeping.

I am aware of the irony. Thank you.

Tamer of cares, to weary toil repose, and from whom sacred solace in affliction flows

2010-01-24T17:00:00.000-08:00

Sleep. Such a simple thing. And so horribly fickle.

At night, I can't sleep. I think the hydromorphone is paradoxically acting as a stimulant (Valium did the same thing when I took it a while back), keeping me awake. And the dose I'm taking isn't quite enough to dull the pain, particularly on nights like the last. My wrists, hands, shoulders, hips, and ankles all ached, and a chill current passed through my bones.

I'm now taking 600mg gabapentin at night, but it's also not quite doing the trick.

Adding extra clonazapam doesn't help me fall asleep any faster, though it does result in heavy sedation the following morning.

A typical night/day is as follows. Go to bed at 11:00. Try to sleep. Fail. Eventually get out of bed around 2:00 and fuss around for 30 - 60 minutes. Go back to bed. Finally fall asleep. Alarm goes off at 10:00 AM. Try to get up. Sometimes fail, sometimes make it. Am exhausted and foggy. By 4:00 PM, am fighting to stay awake. Pinching myself. Try to stay busy. Sometimes stay awake. Sometimes simply cannot and fall asleep despite myself. Wake up in one or two hours. Feel like crap. Go to bed at 11:00. Wash, rinse, repeat.

I've tried getting up at 8:00 to make sure I'm REALLY REALLY REALLY tired by 11:00 so I have no choice but to fall asleep. No joy. I think that the medication combination is somehow undermining my efforts. Which poses its own problem. If I stop taking the hydromorphone entirely, or even reduce the dose, it's likely that the pain, which is already highly distracting while on narcotics, will keep me awake. Additional sleep aids (clonazapam as well as other herbal options) might knock me out, getting tossed into the river Lethe without a flotation device isn't exactly what I'm going for either.

Anyway. To summarize. So. Frustrating.

I'm seeing my pain management doctor on Friday, so hopefully he'll sort out the hydromorphone portion. And then I need to see Dr. M to get the clonazapam sorted. And did I mention that Dr. R prescribes the gabapentin? I wish I could get everyone in a room together and have them actually collaborate on One Treatment Plan, with each other's immediate opinions and feedback. I also wish I had a unicorn.

In the Arms of Sleep

2010-01-21T23:29:00.000-08:00

Yesterday I had a lymphatic drainage massage, then I saw Rose for a shamanic/Reiki healing session. And then I had the first dose in this round of IV glutathione. During my session with Rose, there was a lot of energetic clearing work that went on. I could tell the story, but it just wouldn't have the same resonance anymore, which I suppose is kind of the point.

In any case, there was all sorts of physical, emotional, mental, spiritual clearing. Sweeping out the cobwebs.

By the time I got into bed, I was ready for sleep. And I got sleep. Good sleep, too. And a lot of it. My alarm went off at 10:00 AM. I turned it off and resolved to get up. Then it was noon. OK, I thought, it's really time to get up. So I get out of bed. At 2:00 PM.

I had a snack, took my meds, and tried to stay awake. By 4:30, I was back in bed and fast asleep. I got up again at 6:30. So when Nick came home from work at 7:00, I'd been awake for a grand total of three hours.

So, I've had two days of little but self-care. Clearly it was needed, and I'm glad I'm starting to listen to my body.

I freaked out very very badly

2010-01-16T22:34:00.000-08:00

As you may remember, I had a wee bit of difficulty on Tindamax. After my second attempt to start it, on New Year's Day, I collapsed in a puddle of confused neurotransmitters. I thought that maybe--just maybe--this could be the sign of a very powerful die-off reaction (cysts in the brain and all), but I wasn't sure. Given my physical pain level at the time, I decided to stop the Tindamax again, wait until I saw my pain management doctor to get the pain under control, and then see what my LLMD had to say about my reaction to Tindamax. (I was planning to see both doctors within a week of each other anyway.)

I saw my LLMD on Friday. I told him how I reacted to the Tindamax--which was entirely different than I'd reacted to Flagyl, a similar drug--and he suggested that it's highly likely that Tindamax and I are just not compatible. That my extreme emotional walloping was the result of a nasty drug side effect and not a herx (die-off reaction). So no more Tindamax for me. Done.

Since Tindamax was my cyst-killing agent, we needed to plug that gap in my medication regimen. Plaquenil may or may not kill cysts, depending on whose research you read. So I might be covered there. But we're adding the Diflucan back in (there were signs that yeast might be returning anyway), and I'm also starting grapefruit seed extract, which is supposed to help with cyst-killing.

I also asked Dr. R to prescribe another round of IV glutathione, as it seemed to really help last time. I think that my recent lab work is also testament to the glutathione and other liver support I'm doing. I have the lab results of someone who isn't taking any antibiotics, not those of someone on an extended period of of multiple antibiotics. So that is very, very good.

Since it's been a while, we also checked my vitamin B12, vitamin D, and ferritin (iron storage) levels. My B12 was over 2000, while "normal" is between 211 - 911 pg/mL. So suck it, vegan-haters, all claiming that I can't get my B12. Suck. It.

My vitamin D just barely above the minimum of the normal range. Not terribly shocking, since it's a Seattle winter and I've been avoiding too much sun exposure due to the doxycycline. Still, it's a clue that I might want to make sure I continue to supplement, perhaps even increasing from 1000 IU to 2000 IU daily. It is, after all, a dark and cloudy winter in the Emerald City.

Finally, my ferritin level is right in the middle of the normal range for a woman. And I haven't been supplementing with iron for ages--months or maybe even a year. So, again, suck it, vegan-haters. I get my iron. Suck. It.

Every happy lab result is like a little victory.

P.S. Points to those who get the song reference in my post title. I'm the white rabbit.

P.P.S. I still fondly remember the TKK concert at which I was kicked in the face, resulting in the loss of one of the lenses in my glasses. Luckily, my brother was with me and could drive us home. Ah, memories.

It could all be so simple, but you'd rather make it hard

2010-01-16T21:59:00.000-08:00

Hydromorphone. Dilaudid, if you want to get formal. We're figuring out how we feel about each other. What direction is this relationship going? Is this something that's going to work? Because at first, darling D, you just weren't doing enough for me. I did exactly what I was supposed to do, but your 2 mg pill was just not meeting my needs. I'd stay up late into the night, wishing you could do for me what you'd promised.

So we've moved to the 4 mg pill level. I let you get to second base with me in the backseat of the car. I slept too deeply afterward, but that could have been the clonazapam talking. I woke up at 4 AM and you were gone. I ached for you. Literally, darling. My hips, legs, ankles...I was on fire for you, burning a cold electrical passion in the very marrow of my bones!

I got out of bed to look for you, and you were there for me. Another 4 mg and we snuggled back to sleep.

Hydromorphone and the Ugly Sick Pain Face

2010-01-13T00:56:00.000-08:00

Last Friday I saw my pain management doctor. The methadone hives had returned by that point, so it was obvious that I had to switch medications. He prescribed 2 mg hydromorphone (common brand name: Dilaudid), after my insurance refused to cover his first choice, oxymorphone, or Opana; Opana, despite being developed around 1914 and introduced to the U.S. in 1959, is still only available as a brand name drug. So it's expensive. Like, ridiculously expensive.

Anyway, now I'm taking hydromorphone. It's not working. At least, it's not working at my current allowed dose. Which is why I'm awake and blogging at 1:00 AM. Tomorrow I'm going to call the pain management doctor and ask what I should do. It's possible that I need a larger dose, or that this medication just isn't right for me.

The joint and bone pain continues unabated. The bone pain isn't surprising, but I'd always been thankful that of all the crap I've got to deal with, at least I don't have the classic Lyme joint pain. It's mostly in my lower body--hips, knees, ankles, and all the tiny little joints in my feet.

The pain is causing me to make my Ugly Sick Pain Face. I grind my teeth and clench my jaw and scowl without realizing it. Until I look in the mirror. And then I'm all, "Damn! Where did that scary, ugly chick come from?"

I've told Nick that if the most severe of my Ugly Sick Pain Face Lines remain after I get well, I am seriously going to consider plastic surgery to smooth out my face just a little. Or else I will forever look like I'm in a very bad mood. And once we're not spending gazillions of dollars on Lyme treatment every month, we'll have the disposable income for a little beauty restoration. Right?

Of course, it's highly likely that the Ugly Sick Pain Face Lines will fade on their own once I'm no longer making the Ugly Sick Pain Face all the time. On my good days, and particularly during my rare good weeks, the lines do fade and I suddenly look my age again.

Flow morphia slow

2010-01-05T03:03:00.000-08:00

On Saturday morning, I decided that I had to take a vacation from Sucktown, and I went back on the methadone. Allergies be damned. I couldn't deal with one more sleepless night

Saturday and Sunday night were blissful. I slept. For hours and hours and hours. And then some more. The deep bone pain was gone and I could catch up on all the rest I'd been missing.

Unfortunately, the itching has returned. Still no hives, but it's looking like confirmation that I'm slightly allergic to methadone. But I don't care. I'm going to keep using it until I see my pain management doctor on Friday.

But wait! If I'm all happy and sleeping well and life is roses, why am I blogging at 3:00 AM?

Nightmares. Unrelenting nightmares. After my first hour or so of sleep, I got up and had a tiny bit of chocolate (always good for you). OK. Back to bed. More nightmares. I try to clear the energy in the room. But I keep falling back asleep and into the nightmares.

So I'm blogging, hoping my brain will reboot and I can get some more of that delicious sleep. I plan to spend a little time clearing out my energy field, as well as the bedroom's. Make sure I'm properly grounded and centered before I get back into bed.

Update: Finally got to sleep around 5:00 AM. Slept until 2:45 PM. Was nauseated and dizzy all day. Whee!

Beauty queen

2010-01-01T22:13:00.000-08:00

The last week has kind of sucked. No. Correction. It's really sucked. Like black hole levels of suck.

I stopped taking the methadone on Dec. 23. I'd broken out in little bumps which I was pretty sure where hives (they didn't itch), so I was fairly confident that I was mildly allergic to the methadone. It took over a week, but the bumps have disappeared.

Of course, this means that I've been using Vicodin for pain management...during the most painful herx I've experienced. Some nights I'd take a couple Vicodin, a couple gabapentin, and extra clonazapam, then get up in a couple of hours to take more Vicodin, and I still couldn't sleep.

To make matters worse, I (stupidly, I realize now) started my new Tindamax prescription in the middle of this herx. Great idea, right? Start a new drug that's likely to provoke it's own herx while I'm already serving as the interim mayor of Sucktown. I'm a genius. Really.

I don't want to get into the unpleasant details, but I only lasted five or six days before I had to stop and get my head together. I took a week's break, and this morning I re-started the Tindamax.

And now I'm a mess again. I just won the Sucktown County beauty pageant. For the talent competition, I curled up on the sofa and cried into a pillow. (And let me just say? Nailed it!)

In a week I see my pain management doctor again, and hopefully I'll get something that both controls the pain and doesn't provoke an allergic reaction. And then in two weeks I'm seeing my LLMD. Because when you're a beauty queen, your dance card fills right up.

Small changes

2009-12-22T16:02:00.000-08:00

I'm still feeling rather poorly, but I think I'm slowly coming out of the latest herx. The body pain has gradually faded, which is good because I'd been taking an increased dose of methadone and I'd rather not do that any longer than necessary.

The strangest symptom, though, has tormented me on and off for over a week. Nausea. Sudden, intense bouts of nausea. Can't wait for that to go away, I tell you!

Anyway, I saw my LLMD last Friday, and the only change we're making to my medication regime is that I'm discontinuing the Diflucan and starting Tindamax for the cyst form of Lyme. I'm pulsing the drug--two weeks on, two weeks off. I started taking it on Sunday and haven't noticed any terrible side effects, which is nice.

Jinx!

2009-12-16T13:39:00.000-08:00

Yeah, I jinxed it again. I said that I was feeling better, and now I'm crashing again. Seriously, this little dance is getting old.

The Lyme cycle means that when the bacteria try to reproduce and get killed, I experience the die-off reaction (herx) and feel like crap. Then the herx fades and I start to feel better. And in the case of the last two jinxes, I think I'm making continued improvement due to the Rocephin. And so I start to think, "Hey, this is great! I'm feeling better! Woo hoo!" And then I write about it because I'm at the top of the roller coaster and everything looks wonderful...and then I crest the hill and the herx hits me and whoosh I'm falling back down.

The goal is to make the good times better and the bad times less severe and/or prolonged. I still think that's happening. However, that doesn't mean that the bad times are any fun.

Over the past week, I've seen my cognitive function decline. I can't concentrate as well, and I have started making more speech and writing mistakes. (I just typed "speach" and had to correct it.) I forget things more easily. Sometimes I forget to take a round of medication, which is not good.

The body pain is also increased. The new methadone prescription isn't keeping up with it right now. My hips ache to the point that standing, sitting, and lying down are all painful. Walking hurts. My back hurts. My fingers hurt.

And I'm tired. I'd finally gotten used to getting up early-ish, but now I'm back to sleeping 12 - 14 hours a night. Which isn't any fun, because I keep waking up due to the pain.

But I know that this is temporary. It's clearly a herx, and I've just got to take care of myself and allow my body the space and time it needs to get through this. I've got extra energetic support in place. I'm getting a massage tomorrow. And I'm spending extra time in my jammies, resting and cuddling the cats. It's all a part of healing.

Christmas giving

2009-12-09T15:34:00.000-08:00

I know I say something like this every year, but it bears repeating this year too.

As of Thanksgiving, I've been sick for a full two years. Two years of debilitating symptoms. Two years of putting life on hold. And, what hurts the most, two years of not being able to get out and volunteer for Vegan Outreach. Two years without leafleting college campuses, concerts, and festivals. I miss this joyful work. A lot.

This is where I ask you to help me. Instead of any Christmas present, I'm hoping that you'll donate in my honor to Vegan Outreach. You will be giving me the gift of activism, in addition to helping educate the public about compassionate choices we can make for animals.

And just to sweeten the deal, throughout the month of December, there is a $70,000 matching donation challenge. So whatever you give will be automatically DOUBLED through a matching donation! It's like you're getting a buy-one-get-one-free donation/present for me!

I'm telling you, if you do this, I'll think you're the bee's knees and the cat's pajamas all rolled into one beautiful package.

Knock on wood

2009-12-08T16:24:00.000-08:00

The last time I posted to say, "I think I might be feeling better," I totally jinxed it and a few days later ended up much worse. So I might be tempting fate here. But...

I think I might be feeling better. Previously I was typically functioning at 20% of normal. I think I'd rate my last week at 25 - 30%. I've been up this high before (never thought I'd think 30% of normal was "good"), and then I crashed. The hope is that someday I climb higher and don't crash, or at least don't crash as hard. And then climb back up.

Of course, 30% is still very limited, and I've learned not to push myself when I am feeling better. But maybe maybe maybe the new combination of medications is fighting off the Lyme and bartonella. And the methadone has, so far, been helpful for the pain. And I'm currently doing two infusions of IV glutathione each week, so I'm keeping my liver and detox functioning happy. And of course the Reiki and other energetic healing has proven invaluable.

Keep your fingers crossed for me.

Just One Fix

2009-12-05T17:40:00.000-08:00

Today I saw a pain management specialist. My LLMD recommended him if I felt I needed something stronger than the Vicodin that had originally been prescribed. I have two categories of pain. The first is this horrible upper back pain that I've had for well over ten years. It's gotten a lot worse since I've been sick. It's with me every minute, every hour, every day.

The second kind of pain is this shooting/hot/cold/electric pain in my bones and sometimes joints. This comes and goes, and is most likely directly the result of Lyme and/or herxing from the antibiotics.

The pain management doctor prescribed methadone. I got the fanciest prescription slip I've ever seen (so many security features!), and I had to sign a long document promising that I wasn't going to sell my drugs on the street or use them more frequently than prescribed, etc. Basically, be good.

I've dropped off the script at Walgreens, and I can't wait to pick it up tonight. At this point, the Vicodin dulls the pain a little, but it never goes away (the back pain, that is; the other pain comes and goes). So I'm happy to stop the Vicodin and see how the other drug treats me. The idea of a pain-free night makes me swoon. I am also supposed to continue with the gabapentin.

But I haven't gotten to the most exciting part of the appointment. I've seen numerous doctors over the last dozen or so years for the upper back pain. Responses have varied from "it's probably an ergonomic issue--change your work space" (didn't help) to "try physical therapy" (didn't help) to just nothing more than a shrug. I understand that it's natural to doubt a 21-year-old complaining of intense back pain, but still. Really.

Anyway, the doctor today pressed on a spot on my neck and asked if I could feel the sensation in my shoulder blade area. Why, yes, I could. He said that I probably had a pinched nerve in my spinal column, and if so, it could probably be fixed with minimally invasive surgery.

I nearly fell out of my chair. Fixed? You mean this could just go away?!

Obviously, I'll want to look into the issue and so my research. And then I'd need an MRI to determine if there really is a pinched nerve there.And then I'd need to choose a doctor for surgery and so forth. So I'm not acting on anything immediately, but it's just so exciting that there might be a clear and discernable cause for the problem.

If I make it through December...

2009-11-30T17:13:00.000-08:00

Thanksgiving has come and gone. I've officially been sick for over two years now. It's dark, even in the daytime. I'm tired and I ache and I have so so so many pills to take, not to mention the daily IV infusions.

Every year I think that if I can just make it through December...

Doxy, ceftriaxone, plaquenil

2009-11-20T13:53:00.000-08:00

I've been taking my entire daily dose of doxycycline (400 mg) at once, in the morning, with breakfast. And it's going pretty good so far! Yesterday I didn't have enough to eat, and I was pretty nauseated for a little while, but it passed.

And I'm not getting the weird side effects from the ceftriaxone in the evening. So perhaps it was just the doxy + ceftriaxone at the same time that was giving me grief.

Finally, I'm still waiting to hear back from my LLMD regarding my questions about Plaquenil.

Experimentation and confusion

2009-11-16T16:58:00.000-08:00

Just a few items of note on this very rainy Monday.

1) After stopping all antibiotics for three days to re-boot my system, I re-started the IV ceftriaxone (made by Wockhardt). None of the previously bothersome symptoms appeared. Huh. So perhaps I do not need to switch to the more expensive Sandoz-made ceftriaxone.

2) This morning I re-started doxycycline. I tried taking all 400 mg in one dose. I'd previously feared that this would lead to extreme nausea and vomiting. However, apart from some very mild stomach discomfort (which could be attributed to my breakfast of strong coffee), I was fine. Perhaps the sucralfate is helping? Or perhaps I'm just a morning doxy person? Weird.

3) I just found out that new research indicates that Plaquenil does not kill the cyst form of the Lyme bacteria. Indeed, when introduced it can actually encourage the bacteria to seek protection in the cystic form. I'll need to talk to my doctor to find out if I should stay on the Flagyl or maybe switch to Tindamax or some other anti-cyst antibiotic, as well as if I should take the Plaquenil at all.

Unfortunately, I don't know much about this new research beyond what I just wrote. I'm hoping to find out more in the next few days.

Report from LLMD visit

2009-11-13T17:52:00.000-08:00

I haven't updated much in the last week or two, mostly because I was trying to figure out what the heck was going on with my meds. On October 30, I started doxycycline and switched from one generic brand of ceftriaxone (Rocephin) to another generic brand. Two variables! Pesky.

Headache, nausea, chest pain, stomach pain, vomiting, tight throat, excessive saliva production. It was a regular laugh riot.

So I tried eliminating one of the two suspects for a couple of days to figure out which might be causing my troubles. Unfortunately, my experiments did not produce reliable, repeatable data. Sometimes I'd still feel horrible. Sometimes I'd be just fine. No rhyme or reason.

This was the riddle I presented to my LLMD today. We have a proposed solution. First, I'm going to switch from the new generic ceftriaxone (made by Wockhardt) to the generic ceftriaxone I'd been using previously (made by Sandoz). It's possible that a binder or filler in the powder is giving me grief. I won't get the Sandoz-made kind until next week, and it's going to cost nearly twice as much.

As for the doxycycline, we're looking at a multiphase approach. First, I'm going to start taking sucralfate to protect my stomach and esophagus. One 1 gram pill, four times a day. Fun. But one of it's most common side effects is bezoar formation. And that's just funny.

Then I'm going to try taking all 400 mg of doxy at one time, in the morning. (The doxy never bothered me in the morning, only if I took it after, say, 4 PM.) If this works, great.

It probably won't work. Because 400 mg of oral doxy is a lot at once, and will likely cause vomiting. Still, I'm going to try it. And if it doesn't work, then I'll go back to 200 mg in the morning and 200 mg in the evening. And we'll see if that works. Hopefully the sucralfate will do it's thing and all my troubles will vanish. Ha. Ha. Ha.

The final medication change I'm making is that I'm going to say good-bye to my longtime friend Flagyl. We had some good times, but it's just been a while and I think it's time to move on. It's not you, Flagyl. It's me. I'm sorry. It's been eleven months, and I think I need something new and fresh in my life. The Lyme bacteria aren't afraid of you anymore. (Read: Resistance to Flagyl might be building and it's time to switch to a different drug.)

I'm going to start Plaquenil, 200 mg, twice a day. It acts against the cyst form of Lyme. Additionally, it can lower cellular acid levels, which makes doxycycline more effective. Score! And one of it's

The downside is that it can cause retinitis, so I'll have to get an eye exam every four months to make sure I'm all good. Similarly, I get monthly blood work done to make sure that my body is handling the other drugs OK. This month my labs were simply beautiful. Not a number out of place.

I'm ready for my close up

2009-11-07T12:56:00.000-08:00

New hair. New piercings. Fun!

Re: Jinxing

2009-11-01T12:57:00.000-08:00

To answer last Thursday's question:

Yes.

To be fair, I just started doxycycline on Friday, and am clearly sinking into Herx Mode. Blah.

My mood is unstable, fatigue is crushing, and I'm having olfactory hallucinations again. Usually my olfactory hallunations are of cigarette smoke. But today? Pot roast. It totally smells like someone is cooking pot roast. And I can pretty much guarantee that no one in this house is smoking cigarettes or cooking meat.

Overhead in my house

2009-10-30T17:40:00.000-07:00

Or, things I never thought I'd say...

"That's a good kitty. Go play with the syringe cap."

(By the way, did you know that the little plastic syringe cap makes a great cat toy? Seriously. Best cat toy EVER.)

Will I jinx it?

2009-10-29T20:49:00.000-07:00

If I overlook today, which was fairly crap, I think, maybe, just possibly, I'm feeling a teensy weensy bit better. Just writing this terrifies me. I don't want to jinx it! Nor do I want to have to retract my words in a couple of days.

But the initial reaction/herx to the IV Rocephin is fading. I'm now getting something like 10 or 11 hours of sleep instead of 15+. I've added the Cipro with no ill effects. Maybe I'm turning a corner?

I won't get too exited just yet. I'm going to start doxycycline in a couple of days (having discontinued the minocycline), and that might trigger another herx. I'm also going to start a few rounds of IV glutathione, which provides liver support and helps some of the toxins produced by the Lyme bacteria. Unfortunately, my previous experience with IV glutathione resulted in feeling worse for a couple of weeks, then just normal-bad, and only after four or six weeks did I start to feel "better." It was shortly after that that I had the best couple of weeks I've had since getting sick two years ago.

And then we added new medicine and I crashed again. Still. It's progress. Get built up, get knocked down. Get built back up, get knocked down again. It's how the game is played.

But sometimes there are little victories that represent real progress, like when I regained the ability to read. So I'm hoping that I'm about to achieve a little victory.

In denial

2009-10-23T15:40:00.000-07:00

Today I got the expected letter from my insurance company, denying treatment with Rocephin beyond the initial 30-day period. I knew this was going to happen, and I've lined up a supply of the drug and accompanying supplies. While still expensive ($500 - 600/month), it's way cheaper than continuing with the infusion service I began treatment with.

My insurance company explains the denial of coverage as follows: "The clinical rationale is that the length of therapy requested exceeds the recommended duration of treatment for any manifestation of Lyme disease based upon Infectious Disease Society of America (IDSA) guidelines."

If you haven't read about the Connecticut attorney general's investigation into the IDSA, this is worth reading. The doctors who set the guidelines that my insurance company uses to deny my coverage, they also can get paid by insurance companies to consult on cases like mine so that the insurance company deny coverage and save money. Conflict of interest, no?

The IDSA claims they will revisit their guidelines (the review hearing has already taken place) and announce any changes by the end of the year. I don't expect anything to change. They've got an interest in maintaining the status quo. And, frankly, I don't hold much faith in any organization who could say the following: "In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection." [Emphasis mine.]

Yep, they're saying that any symptoms that remain after a month of treatment are clearly something other than the original infection. (Which is like saying that if your sinus infection doesn't go away after 30 days, then you don't have a sinus infection. You've got something else. Or maybe just the aches and pains of daily living.)

Somehow I doubt that memory loss and severe cognitive impairment in a 31-year-old woman is related to the "aches and pains of daily living." But then again, I'm probably just making it all up. Or I'm crazy. Or something. Sigh.

Lost

2009-10-21T14:19:00.000-07:00

Today I went to Safeway. I was feeling really awful, so I drove, even though it's less than ten blocks away. Even though it's sunny and beautiful right now in Seattle, and the rain is coming back later today so this is my only chance to be in the sun for, like, ages.

Yeah, so I drove ten blocks. That's pretty bad, right?

Worse, though? I got lost on the way home.

At least this time I remembered to wear pants.

Nothing is ever easy

2009-10-19T20:46:00.000-07:00

A couple of updates on my last post.

1) It seems there is some disagreement about the reliability of the Fry Lab blood smear for bartonella. I'll need to look into this more.

2) The minocycline is causing me to wobble and slide around like a drunken ferret. Turns out that women are much more likely to experience vestibular disturbances while taking minocycline. In one study, 70% of female volunteers reported vestibular disturbances, compared to 9% of women taking the placebo. Yikes!

Tomorrow I'll call my LLMD and see what I should do. I imagine I'll be switched to doxycycline.

The Scorecard

2009-10-17T18:50:00.000-07:00

A friend of mine recently commented that it sounds like I'm increasing the intensity of my treatment, but I just keep feeling worse. He asked for a more nuanced report, a scorecard for what's improving and what's not. I'd been meaning to do just that for some time, so here we go. I also saw my LLMD yesterday, so I have test results and new meds to discuss.

Before I begin, I want to note that it's really difficult to tell what's causing what. I've got a few infectious diseases, each with their own set of complex symptoms. Often these diseases can cause hormonal dysfunction and other self-reinforcing problems in the body. And I'm on a ton of medications and supplements, which have their own side effects. So it's not easy to pinpoint the cause of any one individual symptom.

Part 1: The Diseases

Anyway, moving on to neuroborreliosis, or neurologic Lyme disease. (Neuroborreliosis sounds much more impressive, no?) This is a nasty infection. The bacteria are, we think, primarily concentrated in my central nervous system. I have bugs in my brain.

The bacteria that causes Lyme, Borrelia burgdorferi, or Bb, is an amazingly complex little bugger. It's a spirochete, a corkscrew-shaped bacteria. However, it has the ability to penetrate cell walls and hang out inside your cells. This is the intracellular form. And if that weren't enough, it can also transform into a protected cyst. So if you have one antibiotic that starts to kill the spirochete, it's all, like, "Oh noes! Let's go hide!" And the bacteria go intracellular or morph into cysts. Then say you add an antibiotic that can kill the intracellular form. "Oh noes! This sux!" say the bacteria, and they all curl up in to cysts. So you have to add another antibiotic that can kill the cyst form.

I am currently taking IV Rocephin to kill spirochetes, plus oral minocycline for intracellular Bb and oral metranidizole (Flagyl) for the cyst form.

Great! I'm killing bacteria! But wait! Kind of like a vengeful ex-lover who takes a razor to your couch cushions before moving out, as the bacteria die they release toxins. Also, your immune system detects the dead bacteria in your blood and is all, "OMG! What are you?! Time for immune reaction!!! Cytokine attack!" And then you feel even worse than you did before you started killing bacteria. This what I'm talking about when I say I'm having a herx or "die-off" reaction. ("Herx" is short for Herxheimer reaction.)

But wait, you say, how can I tell if the reaction is a herx, side effects from the drugs, or just a symptom flare? This is a major frustration. It can be difficult to discern if you're feeling horrible because you're making progress, or if you're just feeling horrible because you're sick--or some combination of both! Because I don't have enough ironic absurdity in my life.

Bartonella. Hey, remember back in the spring when I said that I was done treating bartonella? Because after trying out Rifampin and Bactrim, I finally did a three-month course of Levaquin, which is generally accepted to be the best way to kill bartonella? Well, given my slow improvement in symptoms I'd attributed to Lyme, my LLMD suggested that we do a blood smear test at Fry Laboratories, just to make sure that the bartonella was gone. Dead, buried, not making a sequel.

Perhaps my bartonella infection drew inspiration from Friday the 13th Parts II - X, because we're coming back for the sequel! The supposedly dead killer comes back for one final scare! (Little Scream reference, since Halloween is coming up.)

The blood smear showed (what we are pretty sure is) happy little bartonella bacteria in my blood. Levaquin = FAIL. So now we're moving on to Cipro. I really hope it does the trick, because I don't want to wait around to fight cyborg bartonella in space. (Surely I'm not the only person who saw Jason X? Right?)

Enough horror movie jokes. Moving on to the viruses. I know that I have elevated Epstein-Barr Virus (EBV) and HHV-6 titers. This is common in people with Lyme (and chronic fatigue syndrome). Most people are walking around with these viruses, happily coexisting. However, my immune system is too weak to keep them in check.

Once the Lyme and bartonella are beaten down, the hope is that my immune system will be able to fight off the viruses. However, because my treatment has been bogged down and slow (by my standards), I'm also taking an herbal antiviral called monolaurin. (There are prescription anti-virals, but they are really expensive and there's no way my insurance company would approve them.)

Part 2: The Symptoms

I should probably divide my symptoms into two groups: major and minor. Major symptoms are the ones that I really hate and the minor ones are just annoying. This doesn't mean that the minor symptoms are less severe than the major ones. It just means that I, personally, can tolerate them better. For example, cognitive deficits bother me much more than physical pain. Even fairly severe pain is less intolerable to me than my milder cognitive issues.

I should also note that not all of these symptoms are with me every day. There are good days and bad days, and I can never predict what's going to come up on the Wheel of Symptoms. It's like a grab bag at a fundraiser a primary school in Hell.

Major symptoms

Fatigue. Crushing fatigue. In the early days of my illness, I went from someone who could easily go on 15-mile day hikes to someone who had difficulty walking around the block. If 100% represents my energy level pre-Lyme, then I'd say that I'm generally running at around 20%. Some days it goes down to 5 - 10%. During the highest point of my treatment, I got up to 30 - 35% of normal. At which point, I was doing well enough to add in more drugs, which knocked me back down. (See herxing, above.)

Short-term memory loss. I forget things. I'll ask someone a question, then ask it again in three minutes. This has gotten a little better with treatment. I don't get lost in the grocery store (much) anymore.

Word-finding difficulty and grammar problems. You can't tell this from my blog, because when I'm blogging I can edit. I use spellcheck. So you don't see all the mistakes. But I often forget basic words. Like "washing machine" or "car." I conjugate verbs incorrectly. When I write, my spelling is terrible. I mix up simple things like their/there/they're, plane/plain, break/brake. Considering that I'm an English major from a highly regarded college and I used to be a professional copyeditor, this is significant.

Concentration and complex (and not-so-complex) thought. It's really hard to concentrate on anything for more than a few minutes. After that, the information starts to swirl and blur and I can't keep it all in my head. Making complex decisions is right out. Simple decisions can also be a problem. Nick will ask, "Do you want your blue shirt or your red one?" And it's like he's asked me to explain string theory in five words or less. I just don't know the answer.

Reading. Reading is still difficult for me. However, one year ago it was nearly impossible. I'd stare at the words on the page, but they just wouldn't connect into meaningful sentences and paragraphs. I could digest maybe a page at a time. This has been where I've seen my biggest improvement. I can read books now! Sure, they're silly mystery novels (and sometimes even that is challenging), but they're whole books. I've even managed to read one or two short-but-complicated medical articles. Progress!!!

Brain fog. The name is pretty descriptive. Foggy, slow thinking. Kind of like how your brain slows down when you have the flu and everything kind of seems like it's underwater.

Sensory overload. This is one of the hardest things to explain, but I'll try. Processing sensory input--sight, smell, sound, touch, etc.--can be overwhelming. On bad days, even bright sunshine can be too much. On normal days, I know to limit the amount of sensory input in a given time period. For example, going to see a movie can be a challenge if there's always a lot of action or important fine details on the screen. By the time my brain has figured out what I'm seeing, the movie has already gone on to the next thing I need to process. It's exhausting at times.

Another example: Too rich a sensory experience can be, to some extent, painful. Nick and I have spent time hiking in the Canyonlands National Park in Utah. Awe-inspiring beauty, right? But I can't look at the pictures we took while we were there. There's just too much detail, too much to process, when I look at the pictures. Trying to take it all in makes my brain hurt.

Just feeling sick. You know that feeling when you're coming down with a cold? Like your head is full of cotton balls and your body creaks and doesn't feel like it's yours anymore? When you're not sick enough to stay home from work but give it serious consideration? That's how I feel at least 75% of the time.

Minor symptoms

Pain. Muscle aches. Occasional neuropathic pain and joint pain. It can be bad enough to prevent sleep, even with Vicodin and gabapentin on board.

Body temperature regulation. I swing between hot and cold. I am comfortable in a narrow range of temperatures.

Sleep. Sometimes I sleep for 18 hours. Sometimes I can't sleep at all.

Poor motor coordination. If you thought I was clumsy before I got sick, well, just don't let me hold anything valuable. And there are days when I know that I would be unsafe behind the wheel of my car.

Painful lymph nodes. Persistent for the first eight months or so of illness. Now mostly gone.

Night sweats. Again, this is a symptom which has largely gone away. A year ago I'd wake up with soaking wet pajamas and sheets, drenched in sweat, and freezing cold. It'd happen at least five days out of the week. Now it happens maybe every two weeks, and the intensity is much less.

Vision changes. This was a problem for about three months in the beginning of 2009. It seemed like my vision was just a little different every day. It's stabilized for now.

Forgetting how to do simple tasks. This hasn't happened very often, or else it'd be listed alongside the major symptoms. Examples include: forgetting how to climb stairs, forgetting how to pour sugar into my coffee mug. This has also decreased in frequency since treatment.

Conclusion

Progress has been made. It doesn't always look like a lot, because there's still a very long way to go. And I write about the symptoms I still have, not the ones that have gone away, because there the ones that are still bothering me.

Going into treatment, I knew that it was supposed to get worse before it gets better. That's certainly true. Once I start to feel a little better, that's a signal that I can tolerate getting kicked down again by a new medication and a new round of herxing. Now I've gone through enough ups and downs that I'm on drugs to target all three forms of the bacteria, plus another drug to target the bartonella.

And the next time I see my doctor, I'm going to press for increasing my Rocephin dose and possibly switching from some oral antibiotics to more IV antibiotics, assuming that the IV form allows better penetration of the drug. And that'll probably kick me down, and then I'll get back up. I'm taking a variety of supplements to help my body eliminate the die-off toxins and to deal with cytokine production. So hopefully each herx will be less severe than the last. But if not, I'll press on anyway. The best way out is always through. / And I agree to that, or in so far / As that I can see no way out but through.

Phone calls from the Easter Bunny

2009-10-15T15:03:00.000-07:00

So I got the most surprising phone call. I mean, it was like having the Easter Bunny or the Lucky Charms leprechaun or the Tooth Fairy ringing me up to chat.

I got a call from (pause for suspense) the Chronic Fatigue Syndrome Clinic at Harborview Medical.

Really, hearing from the Tooth Fairy would have surprised me less. Because, you know, I figured there's a slim chance that the Tooth Fairy might actually exist. Whereas I was certain that the CFS clinic was a myth handed down from doctor to doctor, perhaps embellished in stories over campfires at Doctor Camp or whatever.

Because, you know, I only sent all the paperwork and patient information to them in May 2008. You know, only seventeen months ago.

Of course, the CFS clinic doesn't actually treat CFS. They just tell you to exercise and send you to therapy so you feel better about being sick for the rest of your life. So no big loss on my part.

In any case, I was very polite to the woman on the phone. I said that I had found a doctor with whom I was working, and they could remove me from their waiting list.

Then I called Nick and we made very rude jokes about the clinic for about five minutes.

Outsourcing

2009-10-13T18:33:00.000-07:00

Recently Nick and I have again come to the point where something's gotta give. I'm sick, he's sick, there's no time to take care of ourselves much less anything else. So we started thinking about what we could outsource to someone else.

After some discussion, we decided to try Lucky Palate, a vegetarian (in our case, vegan) meal delivery service. We signed up for six dinners a week for one month. This saves us not only the cooking and post-cooking clean up time, but also the effort of meal planning and a lot of grocery shopping. And by having food pre-made for us, we can be certain that it's healthy and I won't end up eating more raisin bran for dinner because I'm sick and don't want to do anything. I'm not terribly happy about it, but I think it's a good option to try right now.

I love cooking and trying out new recipes. I read cookbooks for fun. I blog about homemade vegan ice cream. But I've been too tired to cook for months. Nick's taken that over. And planning out our meals can be very difficult on a bad neuro/cognitive day. So this is a limitation I will accept for now, and we'll see what accommodation can be made. I hope the Lucky Palate meals are good; they look kind of hippie/stodgy, but that's not always a bad thing.

A simple question of ethics

2009-10-11T16:42:00.000-07:00

I was astounded to see this article in the New York Times Magazine this weekend. (It's fantastic. You should go read the whole thing. Right now. I'll wait. Done? Good.) While the author is not my secret robot clone who snuck into my house and stole this article in its entirety from my computer, I got a chill reading a few paragraphs. While the phrasing may be slightly different, I swear I've tried to make these same simple assertions before.

A vegetarian diet can be rich and fully enjoyable, but I couldn’t honestly argue, as many vegetarians try to, that it is as rich as a diet that includes meat. (Those who eat chimpanzee look at the Western diet as sadly deficient of a great pleasure.) I love calamari, I love roasted chicken, I love a good steak. But I don’t love them without limit.

This isn’t animal experimentation, where you can imagine some proportionate good at the other end of the suffering. [Naturally, this is a point on which the author and I would disagree.] This is what we feel like eating. Yet taste, the crudest of our senses, has been exempted from the ethical rules that govern our other senses. Why? Why doesn’t a horny person have as strong a claim to raping an animal as a hungry one does to confining, killing and eating it? It’s easy to dismiss that question but hard to respond to it. Try to imagine any end other than taste for which it would be justifiable to do what we do to farmed animals. [Emphasis mine.]

I am typically accused of being "emotional" rather than "logical" when I point out that "because it tastes good" isn't a moral justification for behavior. And yet we all acknowledge that "because it feels good" is not an appropriate defense for assault, rape, consumption of child pornography, or stealing a cancer patient's pain meds to get high.

I probably love the taste of meat more than anyone else I know. I salivate when a Pizza Hut commercial comes on. Seriously. I do. I could spend hours fantasizing about a pepperoni pizza with a side of bacon covered in fried chicken skin. Oh. My. God. That sounds delicious. But my temporary sensory pleasure simply cannot justify the cost borne by another being. I don't think that I'm being emotional. On one hand I have "it tastes good" and on the other hand I have a industry of oppression and animals' lives and deaths of misery and terror.

In the last two years I've learned a lot more about suffering than I ever really wanted to. Chronic illness will do that to you. On the worst days, when I couldn't get out of bed, when I was afraid that I'd never be able to read again, when I thought that maybe all the neurological damage was permanent, when I thought that there was no hope and no cure and no way to ever live a productive life again...on those days I wondered if death would be the preferred option.

And yet, I know that my suffering is transitory. I have doctors and medications and people who care about me. The suffering of animals raised for food is broken only by the release of death. I have enough pain in my life. I have no desire to condemn others to hopelessness and despair. Not even if it tastes good.

What's Lyme disease like?

2009-10-08T15:26:00.000-07:00

I get this question from a lot of people. In part because the symptoms are so varied from person to person, depending on length of illness, treatment, etc.

I think the easiest way to explain what having chronic Lyme is like is this: It's unpleasantly like being drunk.

What's so unpleasant about being drunk?

Ask a glass of water.

(Bonus points to readers who get the reference in the above post.)

Blah blah blah

2009-10-06T22:17:00.000-07:00

OK, ready? 'Cuz I'm gonna complain for a little while. With me? Good.

Grievance 1: The arm covers I bought shrank just enough that they're not really comfortable.

Grievance 2: I was awake until 5:30 in the morning yesterday (today, I guess) due to a variety of symptoms. Pain, discomfort, blood pressure issues. And to cap it all off, vomiting.

Grievance 3: I am so horribly tired. Wiped out. Exhausted. If Nick weren't feeding me, I doubt I'd have the energy to actually eat.

Grievance 4: The nurse who was supposed to change my dressing on Mr. Pickles said she'd be here between 5:30 and 7:00 tonight. At 7:30 we call her and discover that she's many miles away and will have to come tomorrow.

Grievance 5: My insurance will only cover 30 days of IV antibiotics. After that, we're paying for it completely. And this stuff isn't cheap.

Grievance 6: Above-mentioned insurance company is now being a jerk about covering Nick's prescription for Tindamax. So we are ordering from Canada, because in the U.S., a 30-day supply is over $400.

Grievance 7: My skin is so dry that it's starting to hurt. My hair is also dry and frizzy. Just another fun part of antibiotic therapy.

Grievance 8: I have chronic Lyme disease. That pretty much sums it up.

The fashionable Mr. Pickles

2009-10-03T14:48:00.000-07:00

My camera was having problems, so forgive the moderate quality of the following photos.

Here is Mr. Pickles:

Mr. Pickles likes to dress up. But white mesh is not his favorite:

Mr. Pickles says, "BOOOOO! Boring!"

But today I got my package from Hijab Al-Muminat! So it was time to play dress-up!

These arm covers work perfectly! I prefer the longer style, but they were only available in lemon yellow (see above) and kiwi green. The rest of the sleeves I ordered (red, fuchsia, brown, and beige) are a bit shorter. If I pull them all the way up to cover the PICC line, then they end about 3/4 of the way down my arm.

I hope they hold up to lots of wash and wear, because I could really see keeping these even when I don't have a PICC. It's a great way to convert short sleeves into long without having to wear a full undershirt.

Slowly, slowly

2009-10-02T22:04:00.000-07:00

It turns out that my immediate side effects from the Rocephin (dizziness, slurred speech) are not normal or just part of a die off reaction. My doctor suggested pushing the medication more slowly.

Tonight I infused the drug over a twenty-minute period, instead of over about eight minutes. It was much easier. Just a little dizziness, no slurring of words, no muscle twitches. I think I might stretch it out to a thirty-minute period. In the end, it saves me time because I was pretty much incapacitated for at least 30 - 45 minutes after the eight-minute infusion.

Mr. Pickles

2009-09-30T21:30:00.000-07:00

Well, my PICC line (Mr. Pickles) was successfully placed yesterday. I've had two doses (each 2 grams) of Rocephin thus far, and my dressing has been changed.

The medication has been tolerable. Each time I've gotten pretty dizzy after the infusion. Tonight I was really slurring my words for about a half hour, and there were some minor muscle spasms. I'm also really tired. I slept until 3 PM today, and I was ready to go back to bed a few hours ago.

As you may know, the line has a little port that hangs down your arm and can flop around unless you secure it. (This means that I have THE WORLD'S GREATEST CAT TOY coming out of my arm.) The nurse gave me this white mesh cover that's working fine, but it's so boring. I'm thinking about getting some interesting socks and converting them to PICC cozies. Mr. Pickles is a snazzy dresser, you know.

I could also buy arm warmers and pretend to be a hipster. And today I ordered a few pairs of arm sleeves from Hijab Al-Muminat. They come in a variety of colors. I got fuchsia, red, kiwi green, lemon yellow, beige, and brown. Normally they're to be worn to provide modesty for a Muslim women if she's wearing loose or short(er) sleeves. But they look like they'll work wonderfully for my purposes as well!

PICC going in today

2009-09-29T11:13:00.000-07:00

As you may recall, I requested help naming my PICC line. A friendly Gerbil suggested "Pickles." I quite like this suggestion.

So my PICC will be named....drum roll please...Mr. Pickles!

Mr. Pickles, so I hear, is a fine, upstanding young man. He is dating a lovely lady named Ivy Biotics, known to her adoring nieces and nephews as Auntie Biotics. Mr. Pickles and Ivy are quite serious about their relationship, and they plan to see each other every day.

And, yes, I am fully aware that I deserve to be shot for writing that last paragraph.

Don't trust anyone over 30

2009-09-28T14:11:00.000-07:00

Tomorrow I will be 31. My birthday present will be a PICC line and my first dose of IV Rocephin. It's not cake, but it'll do.

Sweetness and irony

2009-09-27T02:31:00.000-07:00

First, the sweetness.

This morning marks the beginning of My Big Birthday Weekend, which lasts until Tuesday (my actual birthday). On Tuesday, I'm getting my PICC placed and will receive my first dose of Rocephin, so the fun is really happening Saturday - Monday.

Anyway, this morning we went out to breakfast/lunch/brunch/whatever at The Wayward Vegan Cafe, which is my second home in Seattle. Pretty much everything about them is awesome. Like that they serve the most amazing cinnamon rolls on the weekends. Today the cinnamon rolls were even more amazing. It appears that Nick called ahead and arranged BIRTHDAY CINNAMON ROLLS.

I was sitting at our table, reading The Stranger, when the entire staff came out with a huge plate of cinnamon rolls (with birthday candles!), singing "Happy Birthday" loudly. Delight and embarrassment fought for a moment, but delight won the day.

All in all? Pretty frickin' awesome. The Wayward is the bestest. If you're in Seattle, you must visit. And if you're there on Friday or Saturday (and sometimes Sunday) morning, you'll probably see me there.

Now, the irony. Tonight at midnight there was a screening of Paranormal Activity at a theater in town. Only at midnight, which is way past my bedtime. But it's supposed to be this great horror movie, and it's not playing after tonight. (They're test-marketing it and/or building hype in a few cities, I guess. It'll probably come back in a wider release.) So you see my dilemma. Sleep? Or totally cool horror movie?

In the end, I was "responsible" and decided that going out late and not getting proper sleep would do me no favors. So we stayed home and went to bed.

Except I can't sleep. The Vicodin and gabapentin and clonazapam are just not doing it for me tonight. I took some more Vicodin, but still no relief. I got out of bed and did some yoga stretches. Nothing.

So now it's 2:30 in the morning, which is when we'd probably be getting to bed if we'd gone to see the movie. I'm still awake, and I've got no movie.

Irony, how you mock me!

And in completely unrelated news, I discovered that my broccoli has club root, which means my entire garden plot has the fungus in the soil. Which means that all brassicas and many root veggies will not be happy. And what have I planted? Broccoli, cabbage, brussels sprouts, chard, kale, and carrots. (My lettuce and spinach and radishes will be just fine.) So now I've got garden problems to solve.

Or ignore, as the case may be, once my PICC goes in. Just doing a winter cover crop is sounding pretty good right about now.

No PICC today

2009-09-22T12:47:00.000-07:00

Four hours before I was supposed to have my PICC put in, my insurance company decided that they needed to review my case before approving IV antibiotics.

So now I don't know when (if?) I'll start the IV antibiotics. Because they are expensive. And my insurance company sucks. And I'm really pissed off right now so I'd better just stop typing before the really bad words start pouring out.

The old familiar sting

2009-09-20T21:29:00.000-07:00

Tonight is a very special night. Tonight is my last Bicillin shot.

Cue cheering, dancing in the streets, smiling babies, parades, kittens hugging baby sloths.

Of course, I'm only stopping the Bicillin because I'm getting the PICC put in and will begin IV antibiotics on Wednesday. (Don't cry, baby sloth!) I know that the PICC come with its own set of problems, but I have to say that I'm really happy to stop the thrice-weekly ~~butt stabbing~~ Bicillin shots.

Next Tuesday

2009-09-18T12:46:00.000-07:00

I'm scheduled to have my PICC put in next Tuesday. On Wednesday, a nurse from the infusion service will come out to change the dressing and give me the first dose of Rocephin.

So this means that I have until Tuesday to come up with a clever name for my PICC. Because saying "my PICC" or "my line" or "this thing in my arm" is so dull. And it's more fun to name things!

I'm leaning towards naming it "Ivy." Get it? IV? Ivy? I AM SO FUNNY OMG LOL!

Another possibility is "Cathy" (catheter, Cathy, ha ha). Or I could go with something completely unrelated like "Mr. Skippy." But I think Ivy is my favorite idea so far.

However, I am open to suggestions. Anyone got a good name for my PICC?

"Nuke the site from orbit. It's the only way to be sure."

2009-09-15T20:45:00.000-07:00

After just over one year of treatment, including seven months of IM Bicillin and one month of triple antibiotics--I've only improved a little. My energy level is about the same as when I started treatment. My cognitive/neuro symptoms are a little better. So it's time to break out the big gun.

I'm going to start IV Rocephin (ceftriaxone).

Once I start the IV Rocephin, I'm going to discontinue the IM Bicillin. I will continue taking Biaxin, and I'm switching back to Flagyl from Diflucan. I'll be hitting all three forms of the bacteria, and I'm hitting hard.

This means that I'm going to have a PICC (peripherally inserted central catheter) line installed. It'll run from my arm, through a vein, and empty out just above my heart. I'll be taking 2 grams Rocephin once a day. This may increase to 2 grams twice a day, on a pulsing schedule--four days on, three days off. We'll see how it goes.

An infusion service is going to set up the first month of medication for me. Once a week, a nurse will come to the house to change the dressing on the PICC line. Nick will also learn how to change the dressing, since it's unlikely that our insurance will pay for more than a month of the nursing service (if it'll pay at all). We'll also have to figure out where we'll be getting the medication and supplies if/when the nursing service stops coming by.

My life will be a little more restricted. No getting the insertion site wet. No carrying heavy stuff with that arm. Try not to get sweaty. I'll have to take Actigall as a preventative measure against gall stones (a known side effect of Rocephin), and I'll need monthly blood tests to monitor kidney and liver function.

I don't know when I'll get the PICC put in. My doctor's office has to call the infusion service, who has to call my insurance company. Then I need to call the infusion service, or maybe they'll call me...I'm not sure. Then after the infusion service is set up, I have to schedule the actual PICC insertion. Then I have to tell the infusion service when the PICC will go in, and schedule their first visit for the day after the insertion. And then I actually have the procedure and start taking the IV medication. At least I think that's the order of things.

And we hope that the medication works and I start to get better.

In the meantime, I'm going to have Fry Laboratories do a blood smear test for bartonella. I've done the standard treatment for bartonella, but that doesn't mean we are completely sure it's 100% gone and isn't a factor in my slow recovery.

There are no promises in Lyme treatment. So I'll just see how it goes.

An incident at the garden

2009-09-13T20:09:00.000-07:00

I've mentioned before that there are quite a few homeless people who hang out in the community garden where I've got my little veggie plot. Today, I was watering my radishes when a fellow gardener showed up. "You just missed the excitement," he said.

It turns out that he'd just been at the garden when one of the homeless men came up to him and asked for him (the gardener) to call for an ambulance. The gardener told me, "He looked just fine, didn't look like anything was wrong."

The gardener didn't have a cell phone, but he offered to walk with the man to the ER (there's a hospital only a few blocks away. Then when they'd gone about a block, the man sat down on the sidewalk, chest heaving, and said he wasn't going any further. My fellow gardener then went into the Safeway at the corner and an ambulance was called.

At the end of the story, my fellow gardener again mentioned that the guy "looked fine." Sure, he'd been drinking, but that's pretty normal for the crowd that hangs out at the garden. But he didn't look like anything was "wrong with him." To the gardener's credit, he still offered as much help as he was able to give.

And to my shame, I didn't say anything. I wasn't feeling very good myself and wanted to get out of the sun and on my way. Despite my participation in "Invisible Illness Week," I just nodded and moved on to water my lettuce. I kept thinking, "What does a heart attack 'look like'? Or severe pain? Or a blinding migraine?"

Sigh. I wish I'd said something. Even something as small as, "Well, I look pretty healthy, but actually I've got a chronic illness that sometimes leaves me unable to leave the house. It's not always easy to tell when someone is really sick and needs help. So I'm really glad you did all you could for the guy."

I know I can't be an activist at all times for all causes, but still. I wish I'd handled the situation differently.

Two-person job

2009-09-13T19:15:00.000-07:00

Being chronically ill is a two-person job. I don't know how those without a supportive partner/caregiver make it; it would be so much harder!

Before I got sick, I was a part-time activist and part-time hausfrau. Which means that I'd take care of the meal planning, shopping, cooking, errand-running, laundry, and most of the cleaning. Nick went to work and made money for us. Then in the evenings and on weekends, we had time to spend with each other, hang out with friends, or to pursue other interests.

Now that I'm sick, I can only accomplish a small fraction of what I used to do. So when Nick gets home, he's cooking dinner, then doing dishes, then giving me a Bicillin shot, then folds the laundry, then then then. On the weekends, he usually finishes up the house cleaning that I can't get to during the week. And when we do get "time off" together, it's not like I'm the most exciting company. Much of the time I'm too drained to do anything remotely interesting.

But this isn't about me. It's a shout-out to the caregivers who make trying to get out of bed a worthwhile effort (even if we don't always quite make it). During an illness, the illness itself and the person who's sick tend to get all the attention. But behind the patient is often a caregiver, and that person can make all the difference.

Sleep and pain

2009-09-10T20:51:00.000-07:00

I mentioned a while ago that I was going to ask Dr. M (who prescribes my psych meds) about maybe using Ambien to help with sleep. The last time I brought this up, she didn't think it was a good idea. She still doesn't think it's a good idea.

So we revisited the possibility of using gabapentin. I tried it last December. It worked, then didn't, then I increased the dosage and it was too much and all sorts of crazy.

Anyway. For the last week and a half, I've been taking 300mg gabapentin at night with my clonazapam. At first I took my normal clonazapam dose (0.75mg), and I was seriously knocked out. So a couple of days ago, I experimented with lowering the clonazapam dose to 0.5mg. I don't sleep as deeply, but I think that's because my body is adjusting to the lower dose. (I've been on 0.75mg for quite some time.)

I'm also hoping that I might be able to sleep without Vicodin eventually. I take it in the late evening, a couple of hours before bed. Dr. M isn't thrilled with me being on Vicodin. I don't particularly want to be dependent either, but lesser pain medications are like taking jelly beans. I might as well take nothing.

Today Dr. M asked me if I have body aches during the day as well as during the night. "Well, yeah," I said. My body aches pretty much all of the time. It just varies in location and intensity. So she asked me what I did for the pain during the day.

I shrugged. "I just grit my teeth. It's been here so long that it's almost like background noise. It's the new normal."

She seemed pretty surprised. I guess, in addition to not "looking sick," I also don't really share much of the physical pain. Because the pain sucks, but not as much as the fatigue and the neuro/cognitive symptoms. So I suppose don't get around to mentioning it often. I was surprised that she was surprised.

One lesson I still need to apply to my life is to be more honest with myself and others about how I'm really feeling. I tend to puff up and play the tough girl. The girl with piercings and tattoos, who never cried when she fell off her bike (because she was doing something really stupid) and came home covered in blood. The girl who's carried on with a day of leafleting the Warped Tour, despite an ankle sprain acquired that morning in the parking lot. I'm all, yeah, I'm tough. I can take it. Bring it on, buddy.

And part of that is real--I have a pretty high pain tolerance--and part is a bravado that doesn't always serve my interests. I suppose I don't like to show weakness of any kind, to anyone, nor do I want to be perceived as a whiner. I realize as I'm writing this that my fears are illogical and that dishonesty about my condition doesn't help anyone. I need to work on letting those fears go. It's time to let go with both hands.

Thirty things about my invisible illness you may not know

2009-08-31T13:14:00.000-07:00

In the spirit of those "25 things about me" list that are making their way around MyFace and Spacebook, the organizers of "Invisible Illness Awareness Week" have put together the questionnaire "thirty things about my invisible illness you may not know." Here's my contribution:

1. The illness I live with: Chronic Lyme disease

2. I was diagnosed with it in the year: August 2008

3. But I had symptoms since: November 2007

4. The biggest adjustment I’ve had to make is: Accepting that I'm sick.

5. Most people assume: That I'll get well really soon.

6. The hardest part about mornings are: Taking the handful of pills at breakfast.

7. My favorite medical TV show is: House.

8. A gadget I couldn’t live without is: iPod, for it provides audiobooks when I can't read.

9. The hardest part about nights are: Trying to sleep when I hurt all over.

10. Each day I take 42 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: Am so thankful I found Rose DeDan and her shamanic/Reiki healing practice. And am thankful that Nick and I both can now do Reiki as well.

12. If I had to choose between an invisible illness or visible I would choose: I may end up with a visible illness if I get a PICC line in. But if I had to choose, I'd pick a visible illness. Not that those with visible illness suffer any less, but at least I wouldn't hear "you don't look sick."

13. Regarding working and career: I'm very lucky that I don't "have" to work.

14. People would be surprised to know: I harbor no ill will towards ticks.

15. The hardest thing to accept about my new reality has been: Realizing that my old ways of working through a situation were no longer useful or healthy, and that I needed to accept the "new me" in my new situation.

16. Something I never thought I could do with my illness that I did was: Snowshoeing, even if it was just for a couple of hours.

17. The commercials about my illness: Ha ha ha...no commercials about chronic Lyme because it "doesn't exist."

18. Something I really miss doing since I was diagnosed is: Volunteering for Vegan Outreach.

19. It was really hard to have to give up: The illusion that I was in control.

20. A new hobby I have taken up since my diagnosis is: Vegetable gardening.

21. If I could have one day of feeling normal again I would: Spend the day in bed with my husband doing lots of things that are best left private.

22. My illness has taught me: So much I it should probably be a separate blog post.

23. One thing people say that gets under my skin is: "Maybe you're sick because you're vegan."

24. But I love it when people say: "You're looking good, but how do you feel?"

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass; or, Buy the ticket, take the ride.

26. When someone is diagnosed I’d like to tell them: I will listen to you.

27. Something that has surprised me about living with an illness is: There's a lot of humor to be found in illness. Dark humor, perhaps, but humor nevertheless.

28. The nicest thing someone did for me when I wasn’t feeling well was: A bunch of my friends bought me a "spa day" package when I was feeling particularly unattractive. It was total surprise, and I was really touched by their caring.

29. I’m involved with Invisible Illness Week because: Invisible illnesses suck.

30. The fact that you read this list makes me feel: Heard.

Le jardin

2009-08-21T16:35:00.000-07:00

Today I finished amending the soil in my plot at the community garden. I also added some brick pavers to use as stepping stones. And then...I planted stuff!

Already started plants: lettuce, broccoli, cabbage, Brussels sprouts, leeks, carrots.

From seed: two varieties of radish.

I also met a large sub-section of the homeless people who hang out in the garden. They were all very friendly and we chatted about what I was growing. The homeless/car-camper population in my neighborhood seems to have grown a lot over the past year, and I think it's important to maintain good relations with them. We all share this neighborhood, one way or the other. It's best done with respect on all sides.

Anyway, now I am very sweaty and sticky and dirty and tired. A shower, a snack, and a lie-down are in order.

Back from the doctor

2009-08-14T14:38:00.000-07:00

This morning I had an appointment with my LLMD. I've been fretting about this for weeks now because my overall condition has been backsliding. I'd gotten a little better in May/June--up to 30% of pre-Lyme normal--but I've slid back down to about 20% of normal in terms of energy. Cognition and neuro symptoms have been really bad a few times, but overall I'd say that I'm still averaging about 30%.

Because the May/June improvement trend didn't continue, I wasn't sure what we'd be doing next. Plus there was the babesia test. Too much for my brain to handle at once. So I'll break down the appointment into little numbered bits:

1) Babesia FISH test came back negative. This is good. I don't have many of the classic babs symptoms, so this is pretty much affirmation that I don't have babesia.

2) Yeast. Pesky yeast. I don't have many of the typical yeast overgrowth symptoms, but I have had more sugar cravings than usual. And given the antibiotics I'm taking, it's possible that I've got yeast overgrowth...again. I'm currently taking Nystatin daily to prevent this, but it might not have been enough.

So to combat yeast, I'm going to start a round of Diflucan. At the same time, I'm going to stop the Flagyl. Diflucan goes after yeast, as well as attacking the cyst form of Lyme. (I had been taking Flagyl for the cyst form.) There is also a theory that Diflucan impairs the borrelia bacteria's detox system, making it more vulnerable to attack from other antibiotics.

To summarize, we're hoping that the Diflucan will help with yeast overgrowth, attack the cyst form of the Lyme bacteria, as well as weakening the bacteria's detox system so we can hit it with other stuff.

3) I am continuing on IM Bicillin to fight the spirochete form of the Lyme bacteria.

4) I am going to start a new antibiotic to fight the third form that the Lyme bacteria can take. (The three forms are spirochete, cyst, and intracellular or L-form or cell-wall-deficient, whatever name you want to use.) I'm going to start Biaxin (500 mg twice per day) to treat the intracellular Lyme.

5) Looking at longterm possibilities: If I don't start showing some improvment in the next one to two months, we'll look at using ceftriaxone (brand name: Rocephin). Dr. R said that you can use IM ceftriaxone (butt muscle injection, like the Bicillin), or you can go with the IV option. There are pros and cons for each--the injections hurt a lot, but the IV is more expensive and has better penetration in the brain. But I'm not going to worry about that right now, because I've got plenty of changes going on with my meds.

I'm going back to see Dr. R in a month, and that's when I can start fretting about IV antibiotics again.

6) Given that I'm still not sleeping particularly well, I'm going to consult with the psychiatrist (Dr. M) who handles my psych meds to see if adding in Ambien would be an OK idea. I've asked her about this in the past and she wasn't too keen on the idea. And then I started sleeping better, but now I'm not so it's time to reevaluate.

And that pretty much wraps it all up. I'll leave you, my dear reader, with the new Updated and Complete Medication List, because I know it's just so fascinating.

Early AM:
Levothyroxine

Breakfast:
Sertraline, 175 mg
Diflucan, 200 mg
Biaxin, 500 mg
Nystatin
Vitamin C
Multi-B
Fibroboost
Quercetin
Glutathione precursors
Ashwagandha
Acetyl-l-carnitine
Monolaurin (600 mg)

Mid-morning:
Lumbrokinaise
Multivitamin
Ashwagandha

Mid-afternoon:
Calcium
Vitamin D
Quercetin
Omega-3/DHA

Dinner:
Biaxin, 500 mg
Nystatin
Vitamin C
Fibroboost
Quercetin
Glutathione precursors
Acetyl-l-carnitine
Monolaurin (600 mg x2)

Bedtime:
Clonazapam
Lumbrokinaise
Sublingual B12

Additional:
1.2 MU IM Bicillin, 3 injections per week
Vicodin, as needed for pain, typically 1 pill before bed

A sojourner in civilized life

2009-08-11T18:16:00.000-07:00

This past weekend brought cloudy skies and a drop in temperature. On Saturday, I worked in my own little garden. I've got mostly native plants in the backyard, and I tend to the little strip of land up by the sidewalk. It's shared space, really, since there are three dwellings that make up our little plot of land (one detached house in front; two townhouses in back, where we live). But I tend to pay the most attention to the front/shared space. Which means that I also eat most of the strawberries I grow there. It is a sweet reward.

On Sunday, I visited my plot at the community garden. The previous gardener had woefully neglected the little spot, and it full of weeds, dried up plants, and bits of debris, including one cracked bottle of nail polish. I spent a few hours pulling out dead things and making a dent in the bindweed that is encroaching on the garden. (Bindweed is a horribly invasive plant and is impossible to actually kill.)

I made a fair amount of progress, though there's still work to be done. I also found a beautiful beetle clinging to the underside of a burlap sack in the back of the garden. He had died quite some time ago, and only the exoskeleton remained, iridescent in the sun. I carefully pulled the beetle off of the burlap and set him in the corner of my plot. I covered him with a pottery shard, and I asked that Beetle energy be at home in my garden, now named the Beetle Garden.

When I got home, I looked up Beetle in Animal Speak. Beetle is associated with metamorphosis, change, and new life. How perfectly appropriate for a new garden!

Anwyay, both during and after my adventures in the garden, I feared that perhaps I had pushed things too far. As restorative and nourishing as involvement with nature/plants/insects can be, I have only so much energy. And sometimes I can get lost in what I'm doing, to have the price extracted later.

It should be no surprise that Monday morning--or rather, afternoon, as I woke up at 12:00 PM--found me exhausted and sore. Today, Tuesday, I slept until 1:00 PM and am still exhausted. My throat hurts and I ache all over. Maybe I'm getting a cold. Maybe my allergies are acting up. Maybe it's just Lyme kicking me in the shin. In any case, I've got to take a break and live indoors and wrap myself in padding and be very gentle with myself.

Take what you want, and pay for it, says God.

On Friday, I'm going to see my LLMD. I need to figure out what I want and what I'm willing to pay. I'm doing a little better than a year ago. I can play in the garden, if I pay the price.

Should I add another antibiotic at this time? Is it time to switch to IV antibiotics? How much will treatment knock me down before I can get back up? Take what you want, and pay for it.

Growing stuff makes me happy

2009-08-06T18:03:00.000-07:00

Here's a positive post to balance out the previous ranting against the internet.

Today I got a call from the Seattle P-Patch Garden program. There are a couple of spots open in Greg's Garden in Ballard, and I'm at the top of the list! The wait list is usually 2 - 3 years, but I only had to wait about a year and a half. In the mean time, I've been practicing my veggie gardening in containers. (Tomatoes, peppers, and lettuce this summer.)

So now I need to meet with the site coordinator and figure out which plot is mine, get access to the tool shed, etc. And then I need to determine what I can do this time of year. It's a little late in the season, and I'm not feeling very well at the moment. Still, if nothing else, I can get the soil prepped and sow a cover crop for the winter or some such thing.

I just ordered a copy of Seattle Tilth's Maritime Northwest Garden Guide, which should be a very helpful guide for this novice. I'm all a flutter, thinking about seed catalogues and what I want to grow next year. I know I want to plant raspberries, strawberries, tomatoes, peppers, cucumbers, and Brussels sprouts.

Anyway, I'm very excited. It's one more reason to get well! I can't wait to play in the dirt!

An open letter to the Internet

2009-08-04T20:15:00.000-07:00

OK, internet. Enough with the Lance Armstrong energy drink ads that say "Tired of being tired?"

Because I am so going to kick you in the teeth the next time I see it.

It's all the more annoying because I'm sure that Lance Armstrong, when he was being treated for cancer, would also have wanted to kick someone who asked him if he was tired of being tired, for the purposes of selling an energy drink.

You know what, internet? Forget kicking in the teeth. I'm going to summon every ounce of strength left in my diseased husk of a body and rip you limb from fricking limb. Then then I'll send your body, piece by piece, to your friends and family, tying each parcel closed with a snippet from your intestines.

I stink.

2009-07-31T18:47:00.000-07:00

No, really. I stink. Like, literally. I smell bad.

The last few days in Seattle have been brutally hot. (Today it cooled off, which has greatly improved my mood.) We broke our all-time high on Wednesday and hit 103 degrees Fahrenheit. Mind you, most homes and many businesses do not have air conditioning, and our buildings are designed for a climate of rain, not one of blistering heat. So it got hot. Like, really hot. And if anyone wants to tell me that it wasn't that hot because it gets hotter elsewhere, you can suck it. I lived through an Arizona summer with a broken swamp cooler, so I know me some hot.

Anyway. It was hot. And I was sweating.

The worst thing about metronidazole is the smell. The pill has a foul taste, but I put it inside an empty capsule, so that's not so bad. But it smells. And it makes all of your body fluids smell. Including your sweat.

My bedroom smelled like locker room/sick room combo. I was showering at least three times a day, so my towels started stinking after a day. Even the shower stall started to harbor the faintest hint of metronidazole stink. Perhaps undetectable to the untrained nose, but once you've lived with the metro-stink for a few months, you'll recognize it anywhere and at the smallest concentrations. (Don't even get me started on how difficult it is to scrub the smell out of the toilet bowl. Right. It's disgusting.)

This, naturally, made me very cranky. I also broke out in hives due to heat rash. And I got sunburned (in the shade!), which made the rash worse.

All in all? Yuck.

Brevity

2009-07-26T18:53:00.000-07:00

It's very hot here. I don't like it. And so everything I have to say will be brief:

My neuro/cognitive symptoms are getting worse again. I had a nasty episode the other night. Unable to speak, uncontrolled shaking, splitting headache, bizarre thoughts.

Reading is increasingly difficult again. Concentration falters.

I've also had a bit of neuropathic pain, usually in my legs but sometimes up my arms.

I'm very tired. I feel my energy level slipping back down. I'd improved up to 30% of normal...I'd say I'm back down to 20 - 25% this week.

The heat could be a factor. I could be having a die off reaction. Or it could be that my symptoms are just returning and we need to hit back harder.

Generic Bicillin

2009-07-17T13:09:00.000-07:00

I've been using a generic form of Bicillin for a while now. Trial and error has allowed us (me and my husband) to get better at the whole injection process. Which is great, because we're saving a whole heck of a lot of money.

In the U.S., Bicillin is not available as a generic. It's brand name only, and is sold pre-mixed in syringes. Ten doses (ten syringes) costs about $510 at Target and Costco. Walgreens quoted a price of around $600. For ten doses. Since I'm taking three doses per week, you can see that this is really expensive.

By contrast, my most recent order of generic benzathine penicillin (the same active ingredient as brand-name Bicillin) cost a total of $120.30, including shipping from overseas. That order contained 10 vials of 2.4 MU benzathine penicillin. My dosage is 1.2 MU, three times per week. So I paid $120.30 for 20 doses. Compare that to the U.S. pricing of $1020 for 20 doses. Yikes.

Admittedly, there are additional costs. I had to purchase syringes and needles. I got a box of 100 5ml syringes, a box of 100 18 gauge blunt-fill needles, and a box of 100 19 gauge needles for injection. That all cost around $90. I also got a box of band-aids with unicorns on them, because, you know, unicorns are freaking awesome.

Anyway, I thought I'd blog a little about how I prepare the generic Bicillin for injection, as well as how it's injected. Mind you, this is only what I do. I am not a doctor. I have never played one on TV. I am a horrible role model. I run with scissors, talk to strangers, and swim after eating. I am the person your parents warned you about.

So, yeah, disclaimer: Talk to your doctor before you start or change any medication. Have a trained professional show you how to use said medication. The following information is just a description of my activities and should not encourage anyone to do anything.

So, here's what I do. First, I gather all my supplies. The supplies list:

One box of generic Bicillin (benzathine penicillin), containing 2.4 MU, which equals two doses of 1.2 MU (my dosage)
Two 5ml syringes
Two 18 gauge blunt-tipped needles to fill the syringes
Two 19 gauge, 1.5-inch-long needles for injection
Alcohol wipe to sterilize the injection site
Bandage to cover the injection site, post-injection
Optional: Tissue or gauze to cover the injection site after withdrawing the needle, to absorb any blood or Bicillin that leaks out

Now I put those supplies to use. I present a series of four videos. My camera can only handle about three minutes of video at a time, which is why it's broken down into segments. Sorry about that. On the plus side, you get to watch my husband jab a big needle into my ass.

The videos, in order:

You'll notice a distinct lack of cursing in the video. This is unusual. But I wanted to keep it clean. Typically I try to think of really inventive curses, which helps distract from the pain. And by "curses," I mean shouting things like, "Dick Cheney! Global warming is a myth! I like eating meat! Republicans! Marriage is between a man and a woman!" See, that's much more inventive (and damning) than the standard selection of four-letter words.

Nothing new

2009-07-06T17:44:00.000-07:00

There are a few people I see semi-regularly (hair stylist, massage therapist, etc.) who without fail ask how I'm doing regarding my Lyme disease. And the answer is always the same--it sucks. The individual symptoms may vary (pain, malaise, brain fog, insomnia, exhaustion, nausea), but it all adds up to "I'm still sick."

I know that these people ask about my health with the best intentions. And I appreciate that they care. It's just that sometimes there's this shock, kind of like "How can you not be well yet? It's been ages!" And I know that it comes from a caring place, so I'm not annoyed with the person I'm talking to.

I'm annoyed with the disease. While there are many diseases that require prolonged treatment--no one would be surprised if I were undergoing months or years of cancer treatment--Lyme isn't well known or understood amongst the general public (or most doctors, for that matter).

So month after month, I have to keep explaining that I'm not any better...yet. Or that I've improved from 20% of normal to 25% of normal, which doesn't really sound like much. And because of the controversial nature of Lyme treatment, I feel unreasonably defensive about my treatment choices. So I explain that advanced cases of Lyme require months or years of antibiotic treatment, and that it's going to take a while longer before I get well. And, yes, I'm confident in my diagnosis and my doctor, and I think we're pursuing the correct treatment course.

This defensiveness is my problem, not those with whom I interact. So it's something that I need to deal with and work on. At the core of it all, I think, is that every time someone is surprised that I'm not doing better, I'm reminded of how long it's been. And how much more time and effort and suffering and money is going to be involved before I'm anywhere close to "normal."

Self-pity isn't pretty, so I'll only indulge a little here. But, dammit, I've been sick for over a year and a half. It took nine months to get diagnosed properly. I've been on medication for ten months. The side effects suck, and the die-off reactions suck. I wonder if it'll ever stop. If I'll ever get my life back. I wonder how many years this disease will steal from me. I wonder what permanent damage will be left if I ever achieve remission.

And then I have to also realize that this illness has taught me a lot. While I've lost some opportunities, I've gained others. So, you know, silver lining and blah blah blah. Just to balance the scales and to let you know that I'm not always such a downer. With that in mind, I leave you with a joke:

A husband comes home to his wife, who has Lyme disease. He hands her a bouquet of flowers and says, "Honey, let's go upstairs and make love."

His wife asks, "Well, which one is it? I can't do both!"

That one was so funny I'll give you another for free:

A man with Lyme disease was bragging to his friends about how he got lucky the night before. "Yeah, man," he said, "I was able to find my car in the parking lot!"

Insert laugh track here. And finally, one I made up:

Q: How many Lymies does it take to screw in a light bulb?
A: (long pause) What did you say about the refrigerator? I'm confused.

The medical report

2009-06-20T16:58:00.000-07:00

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.

Sidewalk strawberries

2009-06-12T16:17:00.000-07:00

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.

Gardening delights

2009-06-10T14:59:00.000-07:00

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.

The four o'clocks

2009-06-07T17:59:00.000-07:00

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.

As the crow flies

2009-06-03T19:03:00.000-07:00

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.

Motivation

2009-06-03T11:21:00.000-07:00

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!

Adventures with Bicillin!

2009-05-17T14:45:00.000-07:00

We've started using the generic Bicillin (benzylpenicillin). There's been a learning curve. The first few times were particuarly brutal. Clogged needles, having to inject repeatedly because of silly mistakes, etc. But we've got a fairly good technique now.

There's just one problem. Sometimes we get a gusher. Or, really, a geyser. One night, after withdrawing the needle, a fountain of blood and Bicillin erupted in a two-inch high arc from my butt, showering me, Nick, and the bed. Which meant we'd pretty mcuh lost all of the medicine that had just been very painfully injected into my ass. Friggin' awesome.

The next attempt was slightly more successful--the geyser only arced about 1/2 inch into the air. Sigh.

But we're getting better. The last injection leaked only a little, mostly blood, and a few mintues of pressure was enough to stop the flow. Tonight I get another shot, and hopefully everything will go smoothly.

The experience of the shot is certainly different than you'd get with U.S. Bicillin. The fluid is less dense, and the needle is much larger. The acutal injection process--about two mintues--is certainly more painful, but not unbearably so. After the needle is removed, the stinging lasts for maybe ten minutes or so, which is an improvement over the U.S. stuff. And it doesn't form a tight knot of medication in my muscle, which makes it much more comfortable over the next few hours.

So the short-term experience is worse, but the long-term is better. And the financial experience is obviously in favor of the generic.

We've ordered more of the generic from overseas, and I'm hoping that customs lets it through without a hassle. We've also purchased another box of the super-expensive U.S. brand-name Bicillin, for nights when we're having trouble with the generic.

In less medical and more exciting news, on Wednesday Nick and I will have been married for nine years. We're taking three days of vacation. We're renting an isolated cabin very close to Mt. Rainier National Park. It will be good to get out of the city and into the woods. I think it will be restorative. We've even marked a few short and easy trails, in case I'm feeling up to it.

And today in brain fog...

2009-05-11T15:20:00.001-07:00

I just swung my purse over my shoulder. See, I need to buy cat litter and groceries. I put my cell phone in my purse and grabbed the grocery list. I started walking to the door.

And I then realized that I wasn't wearing any pants.

Medical report

2009-05-11T10:36:00.000-07:00

I saw my LLMD last week. I also finished my second round of glutathione IV treatment (total of eight IVs). I think that the glutathione helped a little. I'm now back at my baseline energy level (20% or so of normal/healthy). The glutathione may have cleared cytokines (created by die-off of Lyme bacteria), and with liver detox. For now I'm pausing on the glutathione IV treatment (I'm still taking glutathione precursors along with my other meds), but it remains an option if I start to decline again.

Since my "improvement" has only brought me back to baseline, it's time to start looking at other issues that might be slowing down my healing process. The first thing we're going to look at is possible heavy metal toxicity--especially since I grew up near a large Superfund site.

This morning I took 1500 mg DMSA, which is a chelating agent. Over the next six hours, I get to drink a lot of water and collect all of my urine in a bright orange jug. Then I shake up the jug and take a smaller sample and mail it off to be analyzed, the theory being that if I've got heavy metals in me, the DMSA will get them moving and I'll pee some out and we can figure out what's there (if anything).

I get to keep the bright orange jug, and I'm thinking of turning it into a flower planter for my balcony. Because that would be funny.

We're also looking at neurotoxins/biotoxins. Normally, your body can filter and excrete toxins. However, Lyme disease and the treatment thereof can release toxins that, in some people, are not fully excreted. The toxins, or some portion of them, can be reabsorbed in the bowel.

To address this potential problem, I've started taking modified citrus pectin twice a day. It's basically a soluable fiber that can help remove fat-based toxins. This is the milder approach. The more aggressive approach is to take a prescription medication called Questran, which soaks up all sorts of things--toxins and pretty much anything else. Which makes timing difficult. You've got to schedule it around your antibiotics and supplements, because you don't want the Questran removing the "good stuff" along with the toxins. And since my medication schedule is already a nightmare, we're going with the more gentle pectin approach for now.

The other bit of news is that we've started using the overseas Bicillin, or benzylpenicillin. Nick and I have only injected it once so far. It was a little difficult figuring out the best way to handle the process. We ended up with some benzylpenicillin sprayed over the bathroom mirror. And then during the injection, the needle clogged. So I had to get stabbed again. But Nick didn't stab hard enough, so the needle just bounced off my skin. (This needle is FREAKING HUGE.)

When Nick finally got the needle inserted and the injection moving...oh my. There was some cursing. "Are you actually biting the pillow?" Nick asked. I think I yelled something very rude back, not at all suitable for polite audiences.

So, yes, the actual injection was more painful than the pre-mixed U.S. Bicillin. However, as soon as the injection was over, the pain dimmed very quickly, and I wasn't as sore as I usually am with the pre-mixed stuff. And it was totally worth $40--approximately how much we're saving per dose by ordering from overseas. I mean, if someone came up and offered me forty bucks to endure that amount of pain for that duration, I'd totally do it. I mean, forty bucks!

I am such a cheap date.

So for $40 per injection, I'll endure. For now. I reserve the right to change my mind.

Kicked in the heart

2009-04-29T12:16:00.000-07:00

You know how when something intense happens (bad news, a horrible shock) you feel like you've been kicked in the stomach? Well, on Monday I got kicked in the heart.

I was driving on I-5 briefly, and I passed one cattle truck. And then another. I cringed inwardly, hoping they were empty. But then i saw a tuft of brown and white hair in one of the gaps. Knowing what happens during transport, and the agony that awaits these beings, I shuddered.

First I cursed my illness, because I've not been able to be out and active and working to end the oppression of non-human animals.

Then I realized that I wasn't powerless...if nothing else, I could send the cattle some Reiki, for whatever their highest good might be. As soon as I "opened" the Reiki channel, it felt like the energy was being ripped out of my hands. I've never experienced a pull so strong and a need so deep.

The energetic void, the need for healing, was...I don't have words for it.

If you've ever had you hair pulled out by an angry sibling or playground rival, that's how hard the energy was pulled from my hands. Like a drowning man gasping at air.

All of this happened in a second, and I felt a hard kick in the heart. The misery and suffering and need that would pull this much energy. And for what purpose? Momentary pleasure for some person?

There is so much sickness in the world. And so little shame for what we do.

Shorn and pierced

2009-04-27T19:01:00.000-07:00

Well, not shorn. Not really. But my hair is much shorter now! See, I got a haircut yesterday that didn't thrill me. It just wasn't rocking it for me. So today I got my hair cut again. I told the stylist, "Do whatever you want. Make me look pretty." And then I took my glasses off, making it impossible to see what she was doing.

She told me that she was giving me a "long pixie cut," which turned out to be what I generally think of as an average pixie cut. In other words, it's short. My camera is broken, so I can't take a picture. But it's basically this cut:

And to top off my beauty excursions, I got a labret piercing--just under the center point of my bottom lip. I'd pierced this once before, but the jewelry kept catching on my gums, so I had to take it out. This time, the piercing is closer to the lip and therefore less problematic.

My piercer (Terrie at Pierced Hearts Tattoo) was really nice. I'll probably go back to her when I get my next piercing (eyebrow?). When the needle popped through both layers of skin, she exclaimed, "Wow, you didn't even flinch!" Unsurprising, because a 14-gague needle pushing through lip, flesh, and skin, is a walk in the freaking park compared to a bad Bicillin shot. And in the end, you have a pretty piercing instead of a bruise and a band-aid.

I was really hoping for the post-piercing euphoria that I remember from my other piercings (tongue, lip, nose) and tattoo...but I got nothing. I'm just really sleepy. Can't win them all.

Tomorrow, more fun with needles: IV glutathione.

Update: Nick came home and took a picture of me with his phone. Here I am:

The only thing different, the only thing new

2009-04-24T21:08:00.000-07:00

Yesterday was my last dose of Levaquin! Unless symptoms re-emerge, I am considered free of bartonella! This is a good thing. And I have one less pill to take.

I'm continuing on IV glutathione. After four treatments, I waited a few days to evaluate how I was feeling. And I think I might be doing a teensy bit better. I'd say that my average day has seen energy levels about 10 - 15% of pre-Lyme normal levels. But the past few days I think I might be back up to around 20%...which is where I was when I started treatment. Two steps forward, three steps back, one step forward. And on and on.

Anyway, I had my fifth IV today and will have three more over the next two weeks. On May 5, I'm going back in to see Dr. R and discuss my status and where we want to go from here.

In other news, I got my generic Spanish "Bicillin" (penicillin G benzathine) in the mail. In the US, Bicillin LA is only available as a brand name drug, and it comes packaged in individual syringes for injection. The generic stuff I got is a powder, and it comes with a little vial of sterile water. So you mix the powder and water together into suspension. I still need to acquire syringes and needles to make this work. I have a nearly full box of US Bicillin in the fridge, so there's no rush.

But I'd just like to point out the cost difference.

One box Bicillin LA at Costco (the cheapest place we could find) was $511. (Walgreen's was over $600.) The box contains ten syringes, which is ten doses.

I bought ten doses of generic powder from Spain for about $60, including shipping. Syringes and needles might add--let's be generous--another $30.

Absolutely ridiculous.

Of course, now we have to go through the hassle of mixing the suspension, and you've got to use a larger needle and it looks more painful. But $400 per month can buy some pain tolerance.

Once I try the generic I'll be sure to post about my experiences.

And here's a video about what it will look like:

Lyme on the radio

2009-04-20T18:08:00.000-07:00

Today the Diane Rehm Show covered the "Controversy over Chronic Lyme Disease." One of her guests was Pamela Weintraub, author of Cure Unknown (which you should read if you haven't already).

I just downloaded the podcast. Should be an interesting listen.

Tired of being tired

2009-04-17T15:24:00.000-07:00

For the last two weeks, I've been getting IV glutathione (for a total of 4 IVs, as of this afternoon) in the hope that it would relieve some of my fatigue. And by "fatigue," I mean crushing, immobilizing, deadening fatigue. Last night I said that I felt like a zombie, but usually zombies have some motivation or purpose and keep shambling along until they get it. I, on the other hand, would be, like, "Hm, some brains would be pretty good, but maybe I'll just fall over on the sidewalk and all the other zombies can trip over my prone body but I'm too tired to care."

Anyway, zombies aside, I'm tired. And I'm tired of being tired.

Dr. R said that if I'm not showing some improvement by next Tuesday, then we will probably abandon the glutathione treatments. He also mentioned something called the Meyers' cocktail, which is basically an IV vitamin treatment. I'm not sure how much it costs, nor why it would be preferable to just taking the vitamins orally. (I only saw Dr. R in passing.) So I'd need to assess the cost/potential benefit. As always, if you search teh intarwebs for "Meyers' cocktail" you'll get reviews ranging from "it's quackery and does nothing" to "it will turn you into a superhero and Michelle Obama will give you her entire wardrobe and the bully from second grade will call you up out of the blue to apologize for making your life miserable when you were seven."

For now I wait. It's sunny and fairly warm outside, and this weekend it's supposed to hit 70 for the first time. I don't know what to do with myself. I feel like I should be doing something. I feel like I should want to be doing something. But at this point, I think even desire is beyond me.

Bite-size Happiness

2009-04-12T20:40:00.000-07:00

Peanut butter. Chocolate. Peanut butter and chocolate. Peanut butter fudge wrapped inside a thin layer of chocolate cookie dough and baked until the dough is just slightly firm and everything is warm and gooey and OMG so delicious you can't even imagine.

You can find the recipe here. It's ridiculously easy and you probably have the ingredients sitting at home right now.

You're welcome.

Report from the LLMD

2009-04-11T18:40:00.000-07:00

Last Tuesday I saw my LLMD again. Not a lot of developments. I'm absolutely exhausted all of the time, which is rather distressing. Before I started treatment, I was running somewhere around 20% of my normal capacity. After a few months in treatment, it gradually increased to, oh, maybe 23%. Now I feel like I'm bottoming out. A good day is 15%...average is more like 10%. This, as you might imagine, is my main complaint. I'm too tired to complain about anything else.

Dr. R thinks that the fatigue is likely caused by die-off due to the Bicillin. Since Bicillin slowly enters the blood stream and takes a while to build up in the body, die-off can also take a gradual and ramping-up road. Burrascano says that the herx reaction can be "strong, prolonged" and last up to six weeks.

To combat the die-off reaction, Dr. R suggested that I start IV glutathione. Glutathione is manufactured by the body and helps the liver get rid of all the toxic nasties that make die-off so unpleasant. I'm already taking glutathione precursors--the building blocks--but it's possible that I just need more oomph to get through this time. And I'd have to take it in IV form because oral preparations are just destroyed in the gut.

I had my first IV on Tuesday and my second on Friday. Dr. R warned me that some people initially feel worse, as the glutathione gets the toxins moving through the body but the liver doesn't quite eliminate them. He also says that most people have great success with glutathione, and it could really help me feel better, have more energy, etc.

So far...no. I think I'm in the unfortunate "some people initially feel worse" camp. It doesn't help that I've not been getting good sleep. Too many factors in this experiment I call my body.

Anwyay, I'm to get two more IV treatments next week, and we'll see if they help. (I hope they do--it's 87 bucks each!) If they do, then we'll do four more over two more weeks. If they don't, we'll figure out something else.

In other news, I get to stop taking the Levaquin on April 21! And unless the bartonella symptoms re-appear, we'll consider that part of my treatment done. Yay!!!

Dr. R doesn't think I'm presenting symptoms of babesia (also very good), so we won't start another treatment course when I'm off the bartonella meds. At least, not yet. Hopefully I'm clear on babesia, but when this round of die-off eases, we'll look at other ways of attacking the Lyme (borrelia) and other possible problems.

For now, my hope is that the glutathione will make life a little more possible. I'm rather pathetic in my current state, and I'd like to be done with that, thank you. After all, I have a small veggie garden I want to create this summer.

Wheel of Symptoms

2009-04-02T20:52:00.000-07:00

I've now been on Bicillin for two months/eight weeks. It seems like much longer, though not much has happened. Some of my neuro/cognitive symptoms have improved; it's been a while since I had a major episode, like forgetting how to climb stairs or speak English. And my word-finding difficulties are easing, I think. However, reading and concentration are still nearly impossible. I am daily thankful for my iPod and audiobooks.

Although a subset of the neuro/cognitive symptoms have improved, other symptoms seem to rise to take their place. It's like Lyme disease is this slowly turning wheel, turning from one symptom set to another. Currently, fatigue and a deadening malaise are my chief complaints. I feel flat. (And fat, but that's another matter.)

I see my doctor again next week.

Obligatory Update

2009-03-27T18:20:00.000-07:00

It's been a while since I last updated, so I feel compelled to write something.

It's been a gloomy couple of weeks. The Bicillin doesn't seem to be doing much of anything, other than making my butt hurt. I haven't had a clear die-off reaction, but it could just be subtle this time.

I do know that I'm running (still) at about 20% of normal (where "normal" is how I used to feel, before I got sick)--on a good day. On a bad day I'd say I'm slipping down to 15% capacity. There have been more bad days than good.

I'm afraid that the Bicillin isn't going to cut it. That I'll spend six months and a few thousand dollars getting nowhere, and then have to go on IV antibiotics. I won't even go into the fear that IV antibiotics won't help, and that remission, to say nothing of a cure, will never come about.

On the bright side, I will hopefully be able to stop taking the Levaquin within a month or so. (I'd have to check my calendar for a more precise date.) Perhaps we will knock bartonella out of the picture, and then go hunting after other potential co-infections.

Captain! She's sprung a leak!

2009-03-17T15:04:00.001-07:00

Last night Nick gave me my Bicillin injection like usual. It wasn't as painful as the past few have been, which was a nice change of pace. This time I had my iPod on and was blasting aggressive and distracting music while I was injected. (Ministry's "Just One Fix" is a nice choice, by the way.)

After Nick pulled out the needle, both blood and Bicillin started to leak out of the puncture mark. Not gushing out or anything, but steadily leaking.

I cursed. Nick cursed. "This stuff is too expensive to leak!" I growled.

Nick (helpfully) called out, "Yikes! Your butt's leaking five dollars a minute!" He paused and then said, "Wow, I bet you've been waiting all your life to hear that."

Luckily for him, I did not have any heavy objects nearby, and I was immobilized on my stomach, pants around my knees, with blood and antibiotic leaking from my ass. Such a pretty picture. Domestic bliss and all that. "You suck," I said.

From behind the closed bedroom door, our calico cat howled, indignant that she was not allowed to be a part of what was happening because it was CLEARLY VERY EXCITING BECAUSE SHE WAS ON THE OTHER SIDE OF THE DOOR. Why do we do this to the cat? We are very bad people, clearly.

Sigh.

This is the second time I've leaked Bicillin post-injection. Very uncool.

Also uncool is that the injections have started to hurt more. Like, a lot more. The first few were OK. You know, no big deal. Yeah, they were unpleasant, but not bad.

But recently, they have hurt. Let me put this into context for you.

I like needles. I've had various piercings, and I enjoyed the actual procedure of piercing so much that it's amazing my face doesn't resemble a pincushion. For a visual--when I pierced my lower lip, a guy drove an 18-gauge needle through the flesh and stuck a stud in the hole. No piercing gun. Just one nice needle.

I have a tattoo, and it was very pleasant. I liked the process. I liked the little needle poking over and over for about an hour. I would have many more tattoos at this point, had I the money to pay for them.

So it's not like I'm a wimp when it comes to needle sticks. My largest piercing was, I believe, a sixteen-gauge. (The smaller the number, the bigger the needle.)

So one would think that a 21-gauge needle for Bicillin delivery would be no problem. But you'd be wrong. See, now that I've been injected three times a week for a few weeks, there are lots of bruises and lumps and knots all over the available injection area. So the tissue is tender and the muscle probably inflamed.

Also, I should point out that the needle is about 1.5 inches long. And it goes all the way in. And then the Bicillin? It most closely resembles Elmer's glue in color and consistency. It's thick and sludgy. And there are giant air bubbles in the needle, which you can't get rid of because the Bicillin is all glue-like. So you just have to inject the air bubble. Which hurts.

So there you are, 1.5 inches of needle in your butt, slowing having this thick gluey stuff pushed into your muscle tissue. Colorful language is often involved.

So when, after all of this--after you've paid $50 per shot and it's painful and annoying and leaves bruises--the Bicillin leaks out...well, it is not cool. Not cool, dude. Seriously.

Another diagnosis

2009-03-12T14:04:00.000-07:00

I have not written anything about this previously, because a person's medical information is a private matter. But now that the facts are a little more established, Nick has given me permission to discuss his medical situation in more detail.

For a few years, Nick has not felt 100% well. He'll have days where he's totally fine, then a few days where he's not quite right, like he's coming down with a cold. Or is just foggy and distracted and tired and unfocused. And then he'll be OK, and then he won't.

He's seen several doctors for this, beginning back in 2005. Finally in 2007, someone suggested that his problem might be sinus-related. While he doesn't have sinus pain, sometimes he's a little snuffly. And he has shown signs of an active sinus infection in the past.

In 2007, he had sinus surgery, which didn't really do much. His current ENT says that the first surgeon didn't take out enough sinus bits, and so he needs another surgery.

The latest round of trouble began back in October 2008 or thereabouts. Nick has been on antibiotics for sinus infection and, recently, anti-fungals in case the infection was fungal in origin. It hasn't really helped.

So we are still looking at whether or not surgery is going to be necessary.

Meanwhile, I've been dealing with a very clear case of Lyme disease. I think you see where this is going.

While we know that Lyme can be transmitted from mother to child during pregnancy, it is debated as to whether or not the Lyme spirochete can be sexually transmitted. (The most famous spirochetal infection--syphilis--is obviously an STI.) But even if it's not, Nick and I have been married for eight and a half years, and spent the three years before that in the same place (college), so we've been together in the same locations, exposed to the same probability of infection via tick, for a really long time. So we've been wondering if Nick might just also have borrelia dancing around inside him.

Nick's Western Blot test came back IgG positive, and his CD-57 count was very low (30). Add in his albeit mild symptoms and history of living in Lyme endemic areas, and there's a decent chance of infection.

I should take a break here and say that not everyone who is walking around with Bb (Lyme spirochete) bacteria in his body has active and/or chronic Lyme disease. You might have this bacteria kicking around, and be totally asymptomatic and healthy because your immune system is doing its job.

But if your immune system runs into trouble, the infection can become active and cause symptoms.

So does Nick have a sinus infection? Does he need surgery? Does he have Lyme borreliosis? All three? Because a weakened immune system (either weakened by Lyme or sinus infection) could allow the other problem (either Lyme or sinus) to emerge. And anatomical issues (sinus structure) could make him more vulnerable to sinus infection, leading to immune weakness...and so on.

In any case, Nick has now joined the Official Kool Kids Lyme Club. We've got a secret handshake and everything.

He's starting off on Ceftin and Biaxin, because they are good choices to fight both Lyme infection and sinus infections. Dr. R (our LLMD) hopes that because his symptoms are so mild that a short course of treatment (six months, maybe more) will be all it takes for my dear husband to regain his footing.

We're still evaluating the sinus surgery option. Surgery might help (clear up the sinus trouble and the immune system can focus on fighting the Lyme), but it could also make things worse as the body is stressed by the surgery itself. At this point, we're going to see how things go over the next month and evaluate our options as we go along.

As for my life, I'm doing none too well this week. I'm exhausted, and yet insomnia occupies the night hours. And I hurt and can't think clearly and am worried about the Levaquin/tendon issue. So now I'm wearing a wrist brace--which is totally sexxxy, so at least I look good.

Good and bad

2009-03-11T17:41:00.000-07:00

First, the good! My generic Levaquin arrived from "Canada" today. I use the quotation marks because, although I ordered from a pharmacy located just across the border in Vancouver, B.C., my order was mailed from Germany. The boxes are dinged up and look a little scruffy, but the pills contain the same stuff as the expensive variety. So now I've got a little over three months' worth of Levaquin, which will cover the (expected) remainder of my bartonella treatment.

Now, the bad! One possible serious side effect of Levaquin is "associated with an increased risk of tendinitis and tendon rupture in all ages." So sayeth the Levaquin website.

In the past few days, I've been getting pain in my hands and in my right wrist, particularly while typing or other fine hand movements. It's very mild, and is possibly unrelated to the drug. However, I've informed my doctor and am monitoring the situation closely.

So here's hoping that I didn't just buy a bunch of medication that I later can't use.

Insurance company? Yes, I still hate them.

2009-03-06T12:54:00.000-08:00

Today I was told that the address I was given yesterday--which is different than the one printed on the claim form--is not correct

Instead I should use a third address, which is also nowhere to be found on their website or any of their forms.

I should note that both of these not-on-the-form addresses I have been given in the past, and then specifically told not to use.

I. Hate. My. Insurance. Company.

2009-03-05T13:14:00.000-08:00

Reasons why I hate my insurance company, a random selection:

1) Bicillin. Denied. Thanks, because I totally have over $500 to spend each month on one drug.

2) Levaquin. Denied. Again, thanks. You suck. So I'm turning to our lovely neighbors to the north and getting my Levaquin from Canada. Still, it's over $100/month.

3) You have not processed my last three claims from my LLMD. One of them was from November. That's, like, a long time ago, ya know? And as for my January and February claims? You say to mail them to some mysterious address other than the one printed on the claim form? What? Do you even exist? Am I talking to some random dialogue generator, formed from the collective notes of absurdist playwrights? Or do your operators sit around huffing paint thinner all day long?

What I should have said was nothing

2009-03-02T19:36:00.000-08:00

Today I saw my psychiatrist, who handles sertraline and clonazapam portion of my medications. She's a great doctor, and I quite like her. Unfortunately, she's not Lyme-literate, but she is (vaguely) receptive to my treatment protocol. Today I gave her a copy of the ILADS treatment guidelines, and hopefully that will help her understand that my LLMD has very good reasons for what he's prescribing me.

Anyway, she was asking how I'm handling the illness and that sort of thing, and one idea led to another and I oh-so-casually mentioned that part of my change in attitude was due to an amazing conversation I had with a cat. (I should write this up someday, but the quick distillation of what he shared with me was that each second, each moment, even if not ideal, even while struggling and in pain, has value and should be fully appreciated and lived.)

Now, take a step back. I've just told my psychiatrist that I'm talking to cats. Which brings me to the title of this post...what I should have said was nothing. (With props to Mike Birbiglia, from whom I stole that line.) So I had to explain about talking to animals. Luckily, she didn't send me off to the psych ward, but I think there was a hint of a raised eyebrow. To be expected, obviously. I know I've done it, and I still think it sounds crazy.

So that's how I started my day. Later, I tripped over an unseen metal bar. Gravity took over and I ended up with a rip in the knee of my favorite jeans, a skinned and very bruised knee, and a giant goose egg of a bruise on my ankle (the one that hit the bar). The tragedy in all of this is not that I was bruised and bleeding, but that I damaged my favorite jeans. Because I currently possess only two pairs of jeans, and now my favorite is torn. Not unwearable, but still.

I wish I could blame the trip-and-fall on Lyme somehow--poor motor skills or something--but this is the sort of thing I've been doing my entire life. So at least some things never change!

I put a spell on you

2009-02-28T20:00:00.000-08:00

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.

My heart aches, and a drowsy numbness pains my sense

2009-02-26T18:12:00.000-08:00

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.

The Starfish Project

2009-02-19T01:49:00.000-08:00

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.

This same flower

2009-02-16T21:49:00.000-08:00

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.

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

2009-02-12T16:43:00.000-08:00

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.

Injection 3: The Reckoning

2009-02-07T21:05:00.000-08:00

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.

Disappearing a disease

2009-02-05T13:16:00.000-08:00

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.

The Lyme Basics

2009-02-04T17:03:00.000-08:00

"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?

My husband shot me

2009-02-03T13:16:00.000-08:00

...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.

Always be prepared

2009-02-02T18:20:00.000-08:00

Hmmm...looking back over the post I started at six this morning when I couldn't sleep...it'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

2009-02-02T06:39:00.000-08:00

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.

Happy birthday to my wonderful husband!

2009-01-28T18:01:00.000-08:00

Today is my husband's birthday! To celebrate, we're having a party on Friday night. If you're reading this and you will be in Seattle, you're invited. We'll have cupcakes, booze (but none for me, due to my meds), non-alcoholic drinks, snacks, board games, and all sorts of crazy fun.

I surprised Nick with his present last week. I hadn't meant to, but when I got his present home, I realized that there was absolutely no way I could hide it. See, I got him an HDTV. A 42" HDTV. He's been wanting to upgrade to an HDTV for ages, but it's not something he'd ever get for himself. Particularly since so much of our income is currently devoted to fighting my illness.

Well, I'm a bit of a sneak, and I've been squirreling money away for a while now. And since the economy is in the tank, you can get really good deals on HDTVs. (I was able to get $400 off the standard price.) And, frankly, Nick deserves something good. He works all day, then has to come home and take care of all of the things I used to be able to do (cooking, laundry, blah blah blah). He's got so little free time to enjoy himself, and I'm pretty boring since I usually don't feel good enough to go out and be social. And I figure if all we do together is sit around at home and watch DVDs, well, at least we can do it on a really cool TV.

Anyway, so I get this huge box home and realize that there's NO WAY I can hide this thing. (I had to get my neighbor to help me carry it in from the car.) So I wrapped it (the best I could, since it took two rolls of wrapping paper) and left it sitting in the middle of the floor. Needless to say, Nick was very surprised and very happy. He's been playing with his new toy since.

It makes me do a little happy dance.

More from the wacky world of health insurance

2009-01-27T19:04:00.000-08:00

My insurance company denied my doctor's request to have Levaquin approved for more than 10 days at a time. (Back story: When I called the insurance company, they said it would be a simple matter of getting the doctor to state that I'd be on the drug for more than 10 days, and then they would grant approval, no problem! Without approval for 30 days' worth of the drug at a time, I have to pay the $35 co-pay every 10 days.)

The reasoning behind the denial is that Levaquin is not approved for long-term treatment of chronic Lyme disease. OK, well, we might resolve this since I'm actually taking the Levaquin for one of my co-infections, bartonella. So maybe it'll get approved. Until then, I'm paying every ten days.

But that's not all the insurance company said in their letter. The letter goes on to state:

The FDA has not approved long-term antibiotics for the treatment of Lyme disease. [We] will consider coverage for this medication in the event that such use has been recognized by one of the following:
* The American Medical Association Drug Evaluations;
* The American Hospital Formulary Drug Service Information;
* The U.S. Pharmacopoeia Dispensing blah blah blah; or
* Two articles from major peer reviewed medical journals that present data supporting the proposed off-label use(s) as generally safe and effective for you condition. These articles are only acceptable if there is no clear and convincing evidence presented to the contrary in any other major peer reviewed medical journal.

This letter scared me but good. Not because of the Levaquin. That might get ironed out, it might not, but even if I have to pay $35 every ten days, it's not the end of the world.

What scares me is this sentence: The FDA has not approved long-term antibiotics for the treatment of Lyme disease.

All of my medications up until now (except the Bicillin, more later on that) haven't really been a problem. The Levaquin thing is irritating, but whatever. My many, many other rounds of antibiotics have been covered. Which is good, because antibiotics are freaking expensive.

I'm worried that this might put up a red flag at the insurance company. I've heard plenty of Lyme horror stories (some involving the eventual death of the patient), and I'm afraid that the insurance company will stop covering all of my antibiotics. (As a side note, Cure Unknown
is a fabulous and entertaining book that explains the political shenanigans that have led to this problem in the treatment of Lyme.)

Nick, as always, is the voice of reason in our house. He told me not to worry (yet) because this might just be a one-off problem and they won't connect the dots and decide to deny all of my medications. And if they tried to do that, we could raise a stink and fight the decision. Sigh.

On to my other problem medication, Bicillin. As I mentioned in my previous post, my insurance company believes that the drug should only be administered in-office, which is ridiculous, and my doctor's office is working to get them to change their policy. Until then, if I want my Bicillin, I have to pay out of pocket.

Nick and I have been talking about this, and I think we're going to pay for the first month of the drug now. I don't know how long the insurance negotiations will take (or even if they will resolve in my favor), and I want to start this next phase of treatment as soon as possible.

Nick and I called a few pharmacies today to figure out who has the best price on the drug. Costco looks like the winner, and I think you can get prescriptions filled without having a Costco membership. Target might actually beat Costco on price, depending on how the drug is packaged. You can get the pre-filled syringes, or you can buy syringes and a bottle of the drug and fill the syringes yourself as you go. At least that's what was said on the phone today. I've found that what a company tells you on the phone is often wildly different than what you hear when you're there in person, so who knows how this will play out.

The weariness, the fever, and the fret

2009-01-23T18:14:00.000-08:00

I feel as though I should write an update. My brain functions today, no small feat. My body, however...I feel it is failing. Bit by bit.

Tomorrow might be different. Some days I've got a mind that's weak and a back that's strong, while today I can think clearly(-ish) but can barely move from the bed. And then there's the spectacular combination of broken body and mind.

Ugh. I'm being dramatic. I should stop reading Keats. (Points to those who caught the reference in the title of my post.)

Anyway. I hear we have a new president. And that is a very good thing.

What else?

My insurance difficulties continue. The insurance company doesn't want to authorize more than ten days of Levaquin at a time. So every ten days I have to go down to the pharmacy and pay another $35 co-pay. We're working on the extended use authorization. Still.

And still the company refuses to accept that intramuscular injections of Bicillin can be administered at home. They classify the drug as an in-office procedure/injectable, and want me to go into the doctor for each shot. Which is, of course, ridiculous. They pay about $110 each time I see Dr. R (and I pay the remaining $90 or so). So they'd be paying at least $330/week plus the cost of the drug if I were to be injected in-office.

If I inject myself, a one month's supply of the drug is some like $650--of which I have to pay 30%. So clearly it is in everyone's best interest to have me inject at home. So my doctor is going to have to try to convince them of this, and hopefully I'll be approved to get my IM Bicillin sometime within the next century.

On an unrelated and positive note, I haven't had any further "spells" (possible seizures) since the forgetting-how-to-speak-English event. Except when I dream. Now I'm having seizures in my dreams. I've also started treating myself with Reiki in my dreams, so maybe it all evens out in the end.

My dreams are exceptionally vivid--they have been for years--to the extent that I'll do something in a dream and honestly believe I've done it in real life. Then I catch myself and realize, "No, wait, I've never done that." Anyway, it makes for interesting dream seizures.

Did I mention the new president? Because that makes me happy.

An Expert in Cat Pee

2009-01-20T11:58:00.000-08:00

There are many things in which one might want to claim expertise. Mountain climbing, perhaps, or kung fu. Cat pee, I suspect, is on no one's list.

But I have, unfortunately, become an expert in dealing with unwanted cat urination. Yes, I claim expertise. From medical issues (cat urinary infections) to cat urine battle (Juno vs. Percy), I've been through just about everything. Lucky me.

So, gentle and caring soul that I am, I have decided to share this wealth of knowledge with you, dear reader.

I present: Anna's Exhaustive Guide to Dealing with Cat Urine.

No Bicillin yet

2009-01-19T17:07:00.000-08:00

ARGH! Stupid insuance company. Stupid pharmacy.

I've been trying to get my injectable Bicillin for about two weeks, and I keep getting punted from one party to another. (From insurance to one specialty pharmacy, to insurance, to a different specialty pharmacy, back to insurance.)

Now my insurance company is saying that IM Bicillin is not a "prescription" drug because it is always administered in a physician's office. My LLMD warned me that this might happen, and he'll need to talk to their medical director to explain that it really is cheaper for them to give me the drugs and inject at home, rather than pay for a office visit three times a week.

So, yeah, I'll probably get my prescription...eventually. But when? So frustrating!!!

Performance Art

2009-01-16T17:08:00.000-08:00

A couple of nights after my last scary neurological experience, I was talking to Nick. And then the words stopped. I couldn't find my words. Now, with the progression of my disease, I've had other word-finding problems, but they have normally been isolated, like forgetting the word for "blender."

But this time, I lost almost all of my words. In a totally academic meta move, I forgot the word for "word." I could see each letter spelled out in my head. W. O. R. D. But I couldn't string the letters together to form the word "word."

And then I realized that I could still speak in French.

"Les mots!!!" I exclaimed. (Words!) And I proceeded to rattle off in broken French.

Nick, I should note, does not speak French. He knows about five words and one complete sentence, the translation of which is "I have a very fierce ferret, so you'd better do what I tell you to."

At the time, this was a teensy bit scary, but also absolutely hilarious. I mean, forgetting the word for "word"? It's too perfect. I'm sure some gloomy, cigarette-smoking European theorist is soiling his pants with excitement as I type this.

Little by little, I got my words back. Nick said, "You know, I'd tell you to rest and get to bed, but I can tell you're having a good time with this."

And, oh, it was true. It was just really interesting to the peanut gallery in the back of my brain to watch the rest of my brain try to make my mouth cooperate with what it wanted.

"My disease," I said, "and my life...it's all just performance art! And you are my captive audience."

In Neurological Terror...

2009-01-12T16:41:00.000-08:00

I just forgot how to climb stairs.

Seriously.

I put one foot on the bottom step. And I didn't know what to do next. I was certain that if I moved my other foot, I'd fall. It seemed impossible that I'd just come down this flight of stairs, and that I had previously moved with (comparative) ease up and down the two flights of stairs in my house.

I could feel panic building. Because this was SO NOT COOL.

Logically, I knew that I knew how to do this. I knew that physically I was still capable of climbing stairs. The muscle memory was there, even if my brain refused to acknowledge that.

So I closed my eyes. And I ran, saying over and over, "Don't look don't think don't look don't think." Because if I stopped, I wouldn't make it all the way up.

Now I'm on the top floor of the house. I hope I can get back down later.

Part of me thinks this is hilarious. I mean, really, it's kind of funny, right? Stairs. Dude. They're stairs. Not rocket surgery. So it's funny.

And the rest of me is absolutely terrified.

I'm home alone and I'm really really scared right now.

Update @ 6:44PM: Nick came home shortly after I wrote the above post. I was applying self-Reiki, and he added some more healing energy into the mix. After a few minutes, he helped me down the stairs and I got some food into me. And more Reiki. Later I made it back up the stairs, largely unassisted.

I'm thinking it's probably a combo of the new meds and resulting die-off reaction, plus the exhaustion of the last two days.

Goes up. Goes down. Round and round we go.

Snacking

2009-01-11T22:39:00.000-08:00

One of the drugs I'm taking requires NO EATING for two hours before/after taking it. So I usually take it in the morning between an early breakfast and late lunch, and then at bedtime.

This means no more bedtime snacks.

Which makes me cranky. I want my bedtime corn flakes!!!

Medical Update

2009-01-06T18:39:00.000-08:00

Today I saw Dr. R. I've made little progress against this illness so far, and we discussed where to go from here. In treating chronic Lyme, there's a lot of variation in how aggressive you want to be. The more aggressive you are, the more likely you are to have severe die-off reactions and therefore feel miserable. But you're moving faster. Short-term pain for (hopeful) long-term gain.

It surely comes as no surprise to anyone who knows me that I want to be as aggressive as possible, within the limits of safety and our financial resources. With that in mind, we are moving from oral antibiotics for Bb (the Lyme bacteria) to intramuscular injections of bicillin. (Next step, if this doesn't work, is a PICC line for IV antibiotics. Much more expensive, and higher risk. And insurance companies often don't want to pay.)

We are also switching over to Levaquin for bartonella, and adding Flagyl to disrupt the cyst form of Bb. We are discontinuing the azithromyacin, bactrim, and ceftin. And we are adding a supplement called Lumbrokinase to treat possible biofilms and hypercoagulability, along with glutathione precursors to help with liver support/detox.

The breakdown of all of this is that Nick is going to be giving me shots in my butt three times a week. And then my butt will hurt for two days. At which point I get my next shot. I am going to be totally butthurt. At least I'm not afraid of needles.

The schedule for all of this is as follows:

Today: Stop azithromyacin and bactrim. Start Flagyl and new supplements.
One week out: Have first bicillin injection. Stop Ceftin.
Three weeks out: Begin Levaquin.

We're spacing out the changes so we can monitor my response to each.

So the updated med list is: Bicillin injections, Flagyl, Levaquin, sertraline, nystatin, levothyroxine, clonazapam, vicodin (as needed for pain), Astelin allergy nasal spray, birth control pills, multi-vitamins, amino acid supplement, B12, omega-3s, vitamin C, vitamin D, acetyl-l-carnitine, ashwagandha, Fibroboost, quercetin, Lumbrokinase, glutathione precursors, d-ribose, and probiotics.