Mission Accomplished

When I say "mission accomplished," well, I'm sure you know what I mean.

Nothing has been accomplished, but things are temporarily looking less nasty. Oh, what will I do for jokes once Bush leaves office? (Nothing--I'll be too busy dancing in the streets with the rest of the leftist pinko commie Seattlites. Unless McCain gets elected. In which case I'm sure there will be a very looooong line at the border heading into British Columbia. And I don't want to wait in traffic, so be sure to get out and vote for Obama, OK?)

Anyway, the die-off reaction seems to be subsiding a little. I'm still experiencing vertigo, nausea, aches, blah blah blah, but it's to a less severe degree. So I'm hoping that it will continue to subside and for a little while I'll just be normal-sick, instead of super-sick.

One thing I haven't mentioned before is that in the last week and a half or so, I've developed a superhuman sense of smell. I've always had a very sensitive nose, but recently it's been CRAZY. Nick smells. Like human. Even fresh out of the shower, I can hardly be close to him. And it's not just Nick. Everyone in the grocery store or on the street...they all smell of human. It's very unpleasant. Even my hairbrush made me gag, until I soaked it in bleach for an hour. Just walking down the sidewalk to the postal box is like an olfactory assault--every patch of dog urine, curbside recycling bin awaiting pick up, or slowly spoiling jack o'lantern--it's just too much.

I don't know why this is happening, but I hope it goes away. Quickly. Because it really, really sucks. And, no, I'm not pregnant, so that's not the cause.

Anyway, with all this going on, it's taken me a bit by surprise that Halloween is this Friday! I mean, I've been savoring the October weather (which has been surprisingly sunny here in Seattle), and the hint of magic in the air...this time of year it feels like the veil between the worlds is just a little thinner. It's my favorite time of year, and it all culminates in Halloween. Sadly, I don't know that we have any plans this year.

My illness makes advance planning very difficult. I never know if I'm going to have enough spoons. I'd love to attend a party or one of the big celebrations here in Seattle. I mean, it's not often that we get Halloween on a Friday night, so it's extra special! But I have no costume yet, and we may just end up passing out candy. But. I almost have a costume. Almost.

With just a few accessories, combined with clothes I already own, I could easily dress as Columbia or Janet (depending on what I want to do with my hair). I'd need some face paint, plus the gloves, boa, and garter (I've got the stockings), and I'd be good to go. Now if I could just get the appropriate matching clothes for Nick to go as Brad or Rocky, that would be fun. But I doubt that I'll find size 16 heels with this little advance warning. Sigh. If we just had another couple, we could all match and do the floor show on demand:



Happy Halloween, everyone.

Does not follow directions

So I've got this giant pill box, with four slots for each day of the week. On Sunday I fill up the whole box so I don't have to figure out what I'm supposed to take at any given time. I can just open the box and dump the handful of pills into my mouth and wash them down with vodka water.

This system works really well...if you fill the boxes appropriately. Last Sunday I was filling the giant pill box and ran out of one of my meds on the "Tuesday AM" box. So I get it refilled at Walgreen's later in the week and pick it up and everything would be just dandy if I'd remembered to put the medication back into the giant box.

So from Tuesday or Wednesday--I can't really remember--I was missing one of my medications. At the same time as I'm going through a nasty die-off cycle. Is it any wonder I've been feeling like a particularly sun-baked piece of roadkill?

Anyway, yesterday I realized what had happened and am back on all of my medications. I still feel pretty awful, but today is slightly less horrible than yesterday. This, I hope, is progress.

In completely unrelated news, I cast my vote for Obama yesterday and mailed off my ballot. Have you voted yet? More importantly, have you voted FOR OBAMA?

Lyme in the media

Earlier this week, our local public radio station, KUOW, aired a story about a woman with Lyme disease. It's an excellent overview of the disease, and I recommend listening to it. You can listen online here; the Lyme story is about 14 minutes into the program.

If you find the story as moving and informative as I did, take a minute to email the station and let them know you appreciate the coverage. The media is really responsive to user comments, and positive feedback will mean that this issue will be more likely to be covered again in the future.

Status Report

Or, The State of the Girl with the Sun in Her Head.

I'm not doing well. In fact, I'm doing quite poorly.

The last few days have been rather brutal. Vertigo coupled with intense nausea is not exactly what I'd choose, had I the option. I'd also pass on the blinding headaches and all-over joint and muscle pain. I wish I could distract myself, but reading is too difficult, and television usually provides too much optical stimulation, which results in more nausea and pain. Luckily, audiobooks and podcasts are generally tolerable, so I've been passing the time with my iPod.

I can't be sure, but my guess is that I'm in another die-off cycle with the Lyme bacteria. The bacteria's life cycle is (if I'm remembering correctly) around four weeks long, so every four weeks a new crop of baby bacteria show up to be (hopefully) killed off by the antibiotics. About four weeks after I initally started antibiotic treatment, I had a very bad week. That was four weeks ago. So I'm hoping that the die-off reaction will subside and I'll go back to feeling awful instead of miserable.

I'm a cheery little rainbow, aren't I?

Nick has been very helpful during this time. I'm really glad he took Reiki classes, because that's been the one thing that's helped me through the last few days. Last night, within twenty minutes I went from being curled up on the floor crying to sitting in a chair and nibbling saltines. Today, when the dizziness was particularly horrible and I felt quite faint, I asked him to send me some Reiki from work.

I suspected that my blood pressure was doing funny things (common in CFS), so I checked my BP before he started Reiki. It was something like 97/45, which is low even for me, and my pulse was racing at nearly 100 beats per mintue. Within a few minutes, I started to feel a little better, so I took my BP again. It'd risen to around 110/58, and my pulse had slowed to a much more reasonable rate. So, you know, that was kind of cool. I don't know how this Reiki thing operates, but it works.

Anyway, I'm hoping to feel a little better tomorrow. Our friend Eric is in town, and his sister is hosting a pumpkin-carving party. I want to make an Obama-o-lantern, but I'll have to see how good/bad I feel. Perhaps Nick will carve a pumpkin in my honor if I can't go.

Good luck

What's in a name?

I tried to explain this issue in another post, but I don't think I did a good job, because I've been asked a few times, "Well, now that you've been diagnosed with Lyme, that means you don't have CFS, right?"

The short answer is No. The slightly longer answer is It Really Doesn't Matter Either Way. I'll try to explain more clearly.

1. What is CFS? Well, if I could only answer that... Of course, no one really knows. Theories abound, but there's no clear etiology. Entire books have been written in an attempt to answer the question. But here's my guess: Something happens that creates a chain reaction in your body that screws up multiple systems, with an emphasis on the immunological and neurological problems. This sets the stage for even more problems--the invaders. Now that your body is compromised, latent and new infections can blossom and flourish.

In my case, it is likely that old EBV and HHV6 infections (viruses that nearly everyone carries around with no ill effects) got re-activated. The Lyme bacteria may be new, or it may have been hiding in the central nervous system and other tissues, and this was its chance to shine as well.

A good analogy is Iraq after the American invasion. We got rid of Saddam Hussein and swept out the old government and disbanded the old army. Suddenly, there was room for various factions to start fighting for control. Insurgent groups that may not have had enough strength before the invasion grow in numbers and power. They get crafty and suddenly IEDs are killing soldiers and civilians alike, and everything is all confused and totally f***ed up.

To carry over the analogy, my body's old government (neurological, immunological, endocrinological) was overthrown and little factions of viral and bacterial infection started multiplying and growing, occasionally setting up the physiological equivalent of car bombs. And now that there's so much chaos and so many problems to fight, it's all f***ed up.

2. Um, OK, so does this mean you have CFS or not? Maybe. Probably. Because CFS is not a particular "disease" but rather a "syndrome," I think that the various factors of the syndrome include many causative agents. I think that Lyme is one of those agents.

3. So you have Lyme and CFS. I think so. That's my best guess.

4. So what are you being treated for? This is where the "It doesn't really matter if it's Lyme or CFS" thing comes in. My doctor's approach to CFS is a holistic one. His first priority is to make sure that the body is able to function and begin to rebuild the shattered systems. To do this he looks at a variety of issues.

The first issue is sleep. Without proper sleep, everything goes to hell. So I'm to get good sleep. I've got medication to help, and I also use Reiki before bed to help get deep, restful sleep. (Now if I could only get rid of the night sweats that wake me up every night!)

The second issue is nutrition. I've talked a lot about that already. You can read that post here.

The third issue is hormonal. In my case, I'm taking an herbal supplement to help with adrenal fatigue, as well as a thyroid supplement, as my lab tests showed a slightly low T4.

The last issue is infection. Once you've got sleep, nutrition, and hormonal support, it's a lot easier to fight infections--viral, bacterial, fungal. To begin, I'm currently being treated for intestinal yeast overgrowth, based on my symptoms and history.

After the yeast/fungal problem is addressed, we've got to ask--which infection do we tackle next? I know that I've got issues with EBV and HHV6, and back in August I tested positive for C. pneumoniae. And now I've been clinically diagnosed with Lyme. So where do we begin?

We're starting with the bacterial infections. The C. pneumoniae is no doubt gone by now, after the first round of antibiotics. The Lyme will be much more difficult to fight, as I've discussed in other posts.

After the Lyme is dealt with, then we will turn to the viral infections. Hopefully my body will have rebuilt its systems enough by then that it will deal with the viruses on its own and we won't have to turn to either herbal or prescription medications. But anti-virals are still a possibility.

So after the Lyme is gone, I may still have "CFS," or I may not.

5. Gee, that's complicated. Yeah, I know. I'm kind of like an infectious soup right now, no matter what name you want to give it. So I'm taking this one step at a time. Sleep. Nutrition. Hormones. Infections. And I might try to throw a little Having Fun in there as well, because I don't think I'll get well if I refuse to embrace what joy there is in my life--and despite everything, there's so much beauty and love and happiness surrounding me, I feel blessed even on my worst days.

6. Are you going to wax philosophical now? I don't believe that "everything happens for a reason" in the way that people usually mean it. But I do think that every experience has value. I'm trying to live through this with mindfulness, with a willingness to be sick when I'm sick and be happy when I'm happy.

This illness has given me many gifts, despite all that it's taken away in return. I've been forced to open up to radically new experiences, and I've found a new depth in relationships--particularly with my husband, Nick, and dear friend Martin. They have both been a tremendous help and a source of joy. I was about to write that I can never repay them, but then I realized that I don't need to, and they don't expect it, and that's a part of what I've learned...trusting, loving, accepting help, and knowing that there's someone to catch me when I fall.

The "Lyme war"

I found a great article about Lyme disease and the controversy surrounding its diagnosis and treatment. It also covers some of the basics about what the bacteria is, its life cycle, and why it is so damn difficult to treat. If you're interested, it is definitely worth a read.

You can find it here.

Here is a snippet describing the Lyme bacteria (B. burgdorferi) itself:

The Lyme spirochete presents a formidable adversary. With more than 1,500 gene sequences, B. burgdorferi is genetically one of the most sophisticated bacteria ever studied. Treponema pallidum (the spirochete responsible for syphilis), for example, has 22 functioning genes whereas the Lyme disease spirochete has 132.

Borrelia burgdorferi’s stealth pathology makes eradication of the disseminated organism a near impossibility. Before the tick delivers its inoculum of spirochetes into the host, it injects a substance that inhibits the immune response, allowing the spirochete to gain a strong foothold. The spirochete itself secretes enzymes that help it to replicate and infect the host.

Once disseminated throughout the body, B. burgdorferi secludes itself and becomes difficult to detect through laboratory testing—and by the host’s immune system. The bacterium may hide in its host’s WBCs or cloak itself with host proteins. Furthermore, it tends to hide in areas not usually under immune surveillance, such as scar tissue, the central nervous system, the eyes, and deep in joints and other tissues.

Phase and antigenic variations allow B. burgdorferi to change into pleomorphic forms to evade the immune system and antibiotics. The three known forms are the spiral shape that has a cell wall, the cell-wall-deficient form known as the “L-form” (named not for its shape but for Joseph Lister, the scientist who first identified these types of cells), and the dormant or latent cyst form. Encapsulating itself into the inactive cyst form enables the spirochete to hide undetected in the host for months, years, or decades until some form of immune suppression initiates a signal that it is safe for the cysts to open and the spirochetes to come forth and multiply.[Emphasis mine. This explains a lot. Last November I caught the flu, a nasty cold, mono, or something icky, and I hadn't been taking care of myself, and I pushed myself too much. And I made my whole situation worse, allowing all sorts of lurking infections to take center stage.]

Each of these forms is affected by different types of antibiotics. If an antibiotic targets the bacterium’s cell wall, the spirochete will quickly morph into a cell-wall-deficient form or cyst form to evade the chemical enemy. [Tricky bastards!]

Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria. Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better. Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles. To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks.

I should note that I'm expecting far more than 30 weeks of antibiotics. And even then, because of the nature of the hide-and-seek morphing bacteria, we may never catch and kill all the little buggers, leaving me open for potential relapse in the future. At least that is my understanding right now. I still have a lot of reading and research to do.

Lyme Disease

As you may recall, my first IGeneX Western Blot for Lyme was "indeterminate." The IgG was positive; the IgM was indeterminate. So Dr. R proposed that we try an antibiotic challenge. See, Lyme is a nasty little bug that can hide itself in tissue, so it's not detected in the bloodstream all the time. By taking antibiotics, we wanted to see if some of the Lyme would be killed off, their dead bodies released into my bloodstream, where my immune system would recognize them and start to produce antibodies. Which we would then test. And we also wanted to look at a CD57 test. This test, according to this site:

This is how it works: Chronic Lyme infections are known to suppress the immune system. The Lyme spirochete can affect all major cell types of the immune system, but it most clearly can impact a specific subset of the natural killer cells. This is called the CD-57 subset. Just as in HIV infection, which suppresses T-cell counts, Lyme suppresses Natural killer cell count such as CD57. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active the infection is, in Lyme we can use the CD-57 count to indicate how active the Lyme infection is. When Lyme is active, the CD-57 count is suppressed.

So a low CD-57 is indicative of a more active infection. Dr. R says he likes to see people at around 150, if not higher.

My CD-57 came in at 25. My new IgM test came back positive. Given the two positive antibody test and the results of the CD-57, combined with my symptoms, strong die-off reaction with antibiotics, and possible exposure to Lyme, Dr. R has diagnosed me with Lyme disease. (I should note here that I am not positive for Lyme according to the CDC guidelines. This area of testing and acute vs. chronic Lyme is very controversial and I'm not going to get into it right now.)

Some ticks who carry Lyme also carry a co-infection about half of the time. Based on my symptom set, Dr. R believes I have a strong possibility of also having a bartonella infection. We are not testing for this because only one of 30 strains can be tested for, and it's expensive to do even that.

The other co-infection, babesia, is not of major concern to us right now. I'm not getting tested now, as I have enough on my plate, but in three to six months if there is no improvement in my night sweats, we will look more closely at babesia. (Also, babesia cannot be treated at the same time as bartonella, so we're starting with bartonella.)

The practical changes in my life given this new diagnosis are few. I am continuing to treat for yeast overgrowth. I have about two more weeks on the Diflucan, and then I will continue to take Nystatin. I'm continuing on azithromycin for the Lyme, and we are adding Rifampin for the bartonella. Additionally, we are probably going to increase my clonazapam dose for sleep, and I'm switching from Tramadol to Vicodin for pain.

Rifampin is particularly exciting because it was originally a medicine for tuberculosis and can cause your urine, sweat, and tears to turn orange or red. Just in time for Halloween.

So for those keeping track, I'm currently taking: azithromycin, diflucan, nystatin, rifampin, clonazapam, vicodin, sertraline, ashwagandha, quercetin, B-vitamin complex, nasty drink mix, d-ribose, n-acetyl-l-cysteine, acetyl-l-carnitine, calcium, vitamin c, vitamin d, iron, omega 3, probiotics, and B12. Oh, and there's also my nasal spray for allergies/non-allergic rhinitis. And my birth control pills, which are completely unreliable now that I'm on antibiotics. But the more drugs the better, right? Better living through chemistry and all that?

In a month we will probably add another medicine to fight Lyme, but are holding off right now because I'm having such a severe die-off reaction already.

As for a prognosis, Dr. R says that 90% of his Lyme patients get "better" (feeling good and unlikely to relapse) within two years. Most of the improvement takes place in the first 9 months, after which it plateaus. Some patients improve more quickly; others can take much longer. This, of course, sounds fairly promising. I'm kind of freaking out about the two years thing, but that's a blog post for another day.

That's the round-up of my personal medical status. I need to read up more about Lyme disease so I can understand it better. See, chronic Lyme is even more controversial than CFS. I have some reading suggestions from Dr. R, and I want to have a better handle on it myself before I try to write about "what is chronic Lyme disease."

Also, I'm sure you, like I, are wondering, "Well, does this mean you don't have CFS?" Sigh. I don't know. Maybe. Maybe not. As I've said before, CFS is a kind of waste basket diagnosis, where they put you when they don't know what else to do with you. Some people with CFS have elevated EBV titers, and others don't. Some have elevated HHV-6 titers; others don't. You see where I'm going.

In addition to the chronic Lyme, I also tested positive for C. pneumonia back in August (it's no doubt killed off by the antibiotics by now). I also have very high EBV titers and mildly high HHV-6 titers. My hypothalamic-pituitary-adrenal axis is no doubt out of whack. Neurologically and immunologically, I'm all messed up.

So it is possible that when we have dealt with the Lyme, there will still be other CFS-related problems left. Or it's possible that when the Lyme is gone, my immune system will have rebuilt itself enough to deal with the viral issues on its own. I just don't know.

I used to think that my illness had a cause-effect pattern of a single line of dominoes, like we used to set up as kids. Domino A knocked down Domino B, which knocked down C, then D, and so on.

Now I see the illness is way more complex. It's more like a fancy domino design, where branches break off, and there are little fan patterns, where one domino can knock over two, which in turn knock over three, which then knocks over four.

Stepping back, the complexity can be almost beautiful, but the reality is that I've got a bunch of dominoes to pick up and put back in my toy box. I can't just pick up the very first domino and expect all of the others to jump up and be set right again. And the first domino to fall might not be the one that started the biggest avalanche. Maybe that was domino number 52.

Anyway, I'm stretching my metaphor too far. What I'm trying to say is that I don't know how this will all get resolved, but for now I'm trusting my doctor's advice and dealing with the Lyme and other bacterial stuff first. Because, in the end, it doesn't matter if I understand the exact cause/effect pattern. This illness isn't going to make sense just because I want it to.

So instead of fighting the chaos, I'm going take a step at a time and hope that I'll get through this.

In the wrong place at the wrong time

I went back to see Dr. R this afternoon. There's a lot to say about that--including a new "official" diagnosis, new medications, new controversies to address--but right now I'm all out of spoons. I'll probably do a big write-up in the next day or so, depending on the spoon level. (In addition to the Major Illness, I've also finally caught the cold that's been going around. So I am even MORE FUN than usual.)

So instead of a medical update, I'll post something from Lewis Mehl-Madrona's Coyote Healing, which I've just started reading.

The Native American perspective is simple: When you are sick you are in the wrong place at the wrong time, and you have been heading in this direction for too long. Therefore you need to turn around; you need a new direction.

Shortly after this, Mehl-Madrona says that profound change is necessary. "Profound change means you must become a different person in some fundamental, recognizable, important way."

I'm working on it.

Ice Cream

I finally updated my vegan ice cream blog. It felt good to post something new.

And it's political! Like, I'm an ice cream activist!

Vegans for Obama! Woo hoo!

So if you want a crazy delicious ice cream for your next debate party, check out my Barack-y Road Ice Cream.

Nick's help as a sous-chef and dishwasher made the ice cream possible. And his reward is, well, a giant dish of ice cream in our freezer, all for him.