Overhead in my house

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?

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

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

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

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

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

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

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

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?

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

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

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

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.