Under Our Skin

If/when this film is screened in your area, please go see it. Please.

Currently Reading

I've recently started reading Cure Unknown: Inside the Lyme Epidemic. I highly recommend it to anyone curious about Lyme disease--what it is, why it's so controversial, and how it can affect patients (and the doctors willing to treat them). Also, it's just a darn good read for anyone who enjoys science writing or investigative journalism.

It explores how hubris and "experimenter bias and expectation" can have a profound impact on how the scientific/medical community can view, understand, and treat a disease. Even for someone completely untouched by Lyme disease, it's a keen insight into common human failings.

As a companion read, I recommend How Doctors Think by Jerome Groopman, a physician and occasional writer for The New Yorker. It's a great tool for patients, and--again--a fascinating read. Even with my limited cognitive abilities (thanks, Lyme disease!), I plowed through the book in just a few days. I love non-fiction page-turners.

Luckily, I think I'm finally making some headway against the neurological symptoms of this disease. My cognitive abilities are not as hampered as they once were. Last night I was able to read over 100 pages of a book! While this was completely commonplace before I got sick, in the last year it's been nearly impossible to read for even thirty minutes at a time. Not only was it simply difficult to understand the words on the page, the act of reading itself was painful. The effort of processing what I was reading was just too much. But now I think I am getting a little better. I hope.

I still have difficulty finding the right words sometimes. I will forget the names of common objects. For example, last night I told Nick that he could put the dirty laundry in "um, the thing that, um, makes stuff clean." Luckily, he's used to this by now, and just put the laundry into the washing machine.

And my grammar and spelling are not perfect. Writing is still hard. I have to go back and correct simple misspellings--mixing up "here" and "hear," for example. And I find myself using the wrong verb tense, especially while speaking. But not as often as I used to. Progress!

Solstice Celebration

Today is the winter solstice. After months of growing darkness, we will once again move towards longer days and more sun. Living so far north, the effects are particularly pronounced. The sun is rising around eight and setting shortly after four, and it will be a wonderful change to see the light gathering again.

Ofelia Zepeda, a poet from the Tohono O'odham tribe, describes a melding of body and earth/time in her poem "The South Corner." She opens: "My body is in line,” then continues, “It is at its darkest point, but only for a short time.” As the long night reaches its end, "the light becomes stronger." The speaker explains:

And so I begin another cycle
along with the animals, the plants, the oceans, and winds
and all that feel this same pull.
I come into balance.
I begin again.

I, too, feel a sense of renewal at the solstice. As such, I feel this is the most appropriate time to adopt my new name. Tonight (despite the eight inches of snow!) I plan to have a private name ceremony in which I will formally accept my name. The legal paperwork will come later, but the real change will happen tonight. I have explained my reasons here.

Have a wonderful solstice, and may the new year bring you all that you need.

Profound Change

I've quoted from Coyote Healing before. I do so again:

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.

Later, Lewis Mehl-Madrona mentions that an aspect of true healing is profound change. If you've been going in the wrong direction, you need a new direction. This is a powerful force for change. I've experienced this on a fundamental level over the last year. My old way of viewing the world (very Western) has been challenged, massaged, and transformed. I see things in a different way...it's very difficult to explain. My shamanic healing process, which I now see as an essential counterpart to my Western medical treatment, has taken me on journeys. I've met spirit guides, and I've caught a glimpse of the timeless expanse stretching backwards and forwards, which both exists and does not exist--a part of our "consensual reality," which is only one world of many (one of three in the Q'ero tradition).

All of this has changed me, softened the hard edges and transformed rigidity into something more fluid. I am embracing "profound change."

Profound change means that you must become a different person in some fundamental, recognizable, important way. The extreme version of this is the Cherokee practice of giving the desperate patient a new name, which means a new identity, since name is identity. [...] Treatment fails without a profound change. Hope also thrives in such changes. We must become a different person to family, friends, coworkers, and the self. In some palpable way, we must be reborn before we can heal.

I read this a few months ago, and it was like a puzzle piece finally coming into place. I wasn't sure exactly how to proceed, but I knew this would be important.

Recently, on a journey with my power animal, I found my name. I was also given a name-that-is-not-a-name, something very private and special and powerful--but that is not to be shared so publicly. My new public name, however, will become my legal name soon. (I don't look forward to all the paperwork!)

Snow Day!

Making Lyme-ade

Take lemons and make lemonade, right? Well, I'm taking Lyme and making Lyme-ade.

OK, I know that was really funny, so you can take a moment to catch your breath. Ready? No? OK, another minute... Now you're OK? Good.

Anyway. Recently I heard that one of my friends believed that I was unhappy. I was flabbergasted. Unhappy? Me? Really?

Which made me realize...I am happy. Seriously.

Are there things in my life I'd like to be different? Of course! I'd love to wake up tomorrow and spend the day sea kayaking in the islands instead of sluggishly plodding around the house. I wish I could spend my money on manicures instead of medications.

But there's always something you want to change, isn't there? The key is to find joy in what is, while working your way towards what you want.

This is not to say that I'm a little ray of sunshine. There are times when I get upset. I whine and fuss and curse my disease and my medications and my predicament. As I've often said, I think I'm having a reasonable reaction to an unreasonable situation.

Still, if I look at my life as a whole, I spend more time laughing than cursing. And I'm working towards wellness. Will I be happier when I'm well? I don't know. I'll be more comfortable. But happier? Hard to say. I think I'm pretty happy right now.

All I Want for Christmas

One of the most challenging aspects of being sick has been that I can't do all--or even a fraction--of the things I used to do. Some things I miss are small, like burlesque dance classes or trying new cookie recipes. Other things are much larger, and the one thing I most want to do again is leaflet for Vegan Outreach.

I'm an activist. But the key component there is "active." And I just can't be active the way I want to be. Back in 2003, when I realized that my calling was animal rights activism, I had this light bulb moment--this is what I'm supposed to do during my time on this planet. It was a moment of absolute clarity of purpose.

When I started volunteering for Vegan Outreach, I found what I believe to be the single most effective way to channel my activist energy. I leafleted schools in Arizona, and when we moved to California, I jumped in with both feet. I leafleted across the Bay Area, and I'd go on road trips to Southern California to leaflet schools in San Diego and Orange County. All told, I've handed out over 54,000 Vegan Outreach booklets on college campuses.

In the past year, I've handed out zero booklets. I've simply been too sick get out into the field. Which is where I know I belong. But I can't do it right now.

Which is where you come in. Yes, you, dear reader! Because Vegan Outreach doesn't run on energy alone. We've got the most amazing staff and group of volunteers, and our outreach efforts have been massively successful. In the fall semester of 2008, we reached over 130,000 more students than we did in the spring semester. And while we couldn't do this without the energy of our members, we also couldn't do it without financial support.

As you know, I'm on the VO board of directors, and I get the financial reports. I can tell you that we don't waste money. Our paid staff members take exceedingly modest salaries, so that the money donated can be used for our stated purpose: to decrease suffering.

Every Christmas Nick and I ask for donations to Vegan Outreach, so this request is not going to come as a surprise. However, this year I'd like to ask you VERY LOUDLY. Because I've been sick, I haven't been able to contribute my physical energy to Vegan Outreach. I honestly cannot express how frustrating (and depressing) this has been. So if I could have one magic wish this Christmas, it would be to regain my full health so that I could jump back into leafleting and making this world a better place, one little piece at a time. But I'm not going to be well by Christmas. I've got months, if not years, ahead of me.

So I'm asking that, rather than purchasing a gift for me, you make a donation to Vegan Outreach in my honor. Vegan Outreach runs on energy and generosity. You can't give me energy, but you can direct your generosity. Any money you would spend on a gift for me, no matter how small, I would prefer be given to Vegan Outreach. Nothing could touch me more, especially this year.

You can donate securely online at VeganOutreach.org. We currently have a matching donation challenge, so your donation will be doubled--so remember to mark your donation for the matching challenge in the "comments" section of the donation form!

So far, so good

Neurontin (generic name: gabapentin) has so far been a big hit. I've had two nights of good sleep! Amazing! And I'm not terribly sedated in the morning!

There haven't been any negative side effects thus far, and I'm hoping that it stays that way. Because getting sleep is very nice.

Last night I went to bed around ten and got up this morning around eight. And then we went out for breakfast at the Wayward and I ate my way through an awesome plate of scrambled tofu, hashbrowns, tempeh bacon, toast. And there was coffee. And it was good.

Better living through chemistry

Recently I've complained that I've been unable to sleep. Well, I can fall asleep just fine, but then a few hours later I wake up and can't get back to sleep. Taking more clonazapam helps me sleep through the night, but leaves me feeling sedated and hungover the next morning. Obviously, this is not ideal. It's already difficult enough to get out of bed and function without the drug fuzzies clinging to me.

So today I discussed this issue with my doctor, who after considering my sleep difficulties and the neuropathic-type "pain," prescribed Neurontin (generic name: gabapentin). Hopefully the change in medication will help me sleep as well as treat the weird hot/cold/pain sensations.

I know that "hot/cold/pain" isn't a great description. But pain is one of those funny things that is nearly impossible to describe unless the person you're speaking to has experienced a similar type of pain. We can categorize pain as stabbing, throbbing, sharp, dull, etc., but only because we generally agree on what those words mean. We've all had dull pain, sharp pain, etc. However, the hot/cold/pain isn't something that I think most people have experienced.

I was talking today with my mom who has neuropathic pain (amongst other conditions), and she knew exactly what I was talking about when I was describing the pain. How it's like it's inside your bones, that the very marrow is affected.

Anyway, I found the discussion very interesting. How do you describe a particular kind of pain to someone who hasn't felt it? For example, assume I've never had a throbbing pain--and then explain to me what it feels like. Difficult, no? It's like trying to explain to someone who has never itched, what itching feels like.

However, I don't think that you, dear reader, need to precisely understand the quality of sensation. I'm just rambling about language and expression...it's just interesting to me. And we shall see what the Neurontin does for me.

What kind of person do I want to be?

In which I present an essay by Matt Ball of Vegan Outreach. His title is "Is Being a Vegetarian Important?" The title I give it is "What kind of person do I want to be?"

As an activist, it's been very difficult being sick--which has meant not being active. And what is an inactive activist? I'll write more about illness and identity later. For now, I give you Matt Ball.

Is Being a Vegetarian Important?

Have you ever been in so much pain that you thought you were going to die?

Have you ever suffered so much that you wanted to die?

Every year, hundreds of millions of individuals in the U.S. do suffer to death. Slowly. Excruciatingly.

Egg-laying hens packed in tiny wire cages, unable to move because of how crowded they are, can have their wings or necks stuck in the wires, keeping them from getting to food or water.

Pigs, transported hundreds and hundreds of miles in all weather in open trucks without food or water – can freeze to death.

Chickens raised for meat, bred to grow so large so fast that their legs break under their own weight, leaving them incapacitated and unable to get food.

Vegan Outreach leafleter Wayne Hsiung described watching a downed dairy cow’s last few moments:

An hour before I was planning to leaflet, a friend of mine called and said that he had spotted a stalled transport truck with a downed dairy cow inside.

I arrived to witness a grisly scene. The poor girl was collapsed on the ground inside the truck, in a 3-inch-deep cesspool of feces and urine. You could see her wide, terrified eyes staring into nothingness, her entire body quivering ever so slightly. But she was making no sounds. The other cows had trampled her broken body; she had bloody wounds and bright red lesions that were clearly visible through the filth. Her udder was swollen to many times its normal size. We noticed a ghastly sliver of flesh on a gate mechanism above her. (It was later suggested to us that this might have been her tongue. Cows tend to lick the sides of the truck in search of moisture, but when it's a frozen mechanized gate, that desperate attempt can have tragic consequences.)

Our poor friend died that day, on the filthy floor of a bloody transport truck. We witnessed her body go cold, and her eyes stop moving. Her entire life had been enslaved and twisted by violence and prejudice.

Words cannot convey the horrifying conditions that bring about these slow, agonizing deaths – how the animals are bred, how they “live” on factory farms, and, for those who survive the brutal system, how they are butchered in industrial slaughterhouses. No verbal or even video description can begin to capture it; even visiting these confinement warehouses and slaughterhouses can’t begin to convey what it is like to live one’s entire life there, to be callously killed in the end.

It is enough to know that modern agribusiness is so inherently brutal that it will kill off, pre-slaughterhouse, hundreds of millions of animals through slow, agonizing means, simply as a cost of doing business. This is a system of cruelty so vast, so intense, that it really is beyond comprehension. As Michael Pollan wrote in the New York Times:

More than any other institution, the American industrial animal farm offers a nightmarish glimpse of what capitalism can look like in the absence of moral or regulatory constraint. Here in these places life itself is redefined—as protein production—and with it suffering. That venerable word becomes “stress,” an economic problem in search of a cost-effective solution, like tail-docking or beak-clipping.... Our own worst nightmare such a place may well be; it is also real life for the billions of animals unlucky enough to have been born beneath these grim steel roofs, into the brief, pitiless life of a “production unit....”

This is the system we endorse and support when we purchase its products. Consuming flesh foods from modern agribusiness not only pays others to exploit and butcher fellow feeling beings; it not only affirms the view of animals as unconsidered cogs in the machine of profit; but our purchases are what give agribusiness the resources needed to grow and brutalize more of our fellows.

This is enough to compel me to be a vegetarian, to make a daily, public statement against the breathtaking viciousness behind meat, eggs, and dairy.

For me, being a vegetarian is not the conclusion of an impartial set of utilitarian calculations, nor the endorsement of “animal rights.” Rather, being a vegetarian is a statement about the person I want to be: that I could not live with myself if I were to be a part of such unwatchable cruelty to animals. The phrase is: How could I look at myself in the mirror? And that is literally how it happened for me – looking in the mirror and realizing I couldn’t consider myself a “good person” if I continued to pay others to brutalize animals so I could eat them.

But of course, not everyone makes this choice. With factory farms concealed and society structured around eating faceless meat, we can easily refuse to take a stand and set ourselves apart. And if confronted with the hidden realities of modern agribusiness, we can seek out the “less bad” and call it good.

For example: Michael Pollan, quoted earlier, not only isn’t a vegetarian – he actively mocks the “moral certainty” of vegetarians. He fabricates fantastic rationalizations to continue eating animals. For example, he says that thinking in terms of individual animals is human-centric, and that we need to think in terms of species’ interests. Of course, this is exactly backwards. “Species” is a human construct, an abstraction that inherently can’t have interests. Only individuals have the capacity to experience pleasure or suffer pain and thus have interests. That we should eat the flesh of our fellows to advance the “interests” of a species is so absurd, such a perfect inversion of reality that it is truly stunning that an otherwise seemingly intelligent person would be willing to spout such ridiculous nonsense. Pollan is the perfect example of Cleveland Amory’s observation that people have an infinite capacity to rationalize, especially when it comes to something they want to eat.

(This may seem an unnecessarily harsh condemnation of a man who at least is willing to write about factory farms. But Pollan not only mocks vegetarians via laughable strawman arguments, he even rationalizes the brutal act of force-feeding geese to create foie gras! This level of repulsive rationalization should be exposed for what it is.)

Pollan’s unwillingness to seriously consider vegetarianism, combined with his firsthand experience of “our own worst nightmare,” leads his rationalizing capacity to praise “happy” meat from “humane” farms. Having had the time and resources to investigate the various farms available, the pinnacle of Pollan’s praise is Polyface farm, where “animals can be animals,” living, according to Pollan, true to their nature.

So what is Polyface like? Rabbits on the farm are kept in small suspended-wire cages. Chickens are crowded into mobile wire cages, confined without the ability to nest or the space to establish a pecking order. Pigs and cattle are shipped year-round in open trucks to conventional slaughterhouses. Seventy-two hours before their slaughter, birds are crated with seven other birds. After three days without food, they are grabbed by the feet, up-ended in metal cones, and, without any stunning, have their throats slit.

This is the system Pollan proclaims praiseworthy. While mocking vegetarians, he argues we should ethically and financially endorse Polyface’s view and treatment of animals.

But really, how can we expect better? In the end, Polyface’s view is the same as Tyson’s – that these individual animals are, ultimately, just meat to be sold for a profit. It is logically and emotionally impossible for there to be any real respect, any true, fundamental concern for the interests of these individuals when these living, breathing animals exist only to be butchered and consumed. If we insist that we must consume actual animal flesh instead of a vegetarian option, it is naïve, at best, to believe that any system will really take good care of the animals we pay them to slaughter. If you say an individual is just meat, they will be treated as such.

In the end, it really is a question of what kind of person we choose to be. Or, to think about it another way – what is the narrative of our life? Is it that we oppose cruelty or support slaughter? Do we make our own decisions or do we rationalize what we’re used to doing?

I believe there are more important things in life than accepting the status quo, following the norms of society, and taking the easiest path. Furthermore, choosing the road less traveled does not necessitate denial and deprivation. Making our lives a part of something larger expands our life’s narrative, enriches our existence, and allows for real meaning and lasting happiness. Writing our own narrative frees us from the constraints of the “norm.” Choosing to be a vegetarian makes a public, powerful, ethical statement – not just about the suffering of animals, but about the strength of our character. (I discuss this in more detail in “A Meaningful Life.”)

I ask you to consider one more thing.

The average American consumes about three dozen land animals every year. By choosing to be a vegetarian, you will accomplish a great deal of good over the course of your life – you will spare many hundreds of animals from the malicious maws of modern agribusiness.

But get this: Tomorrow, you could accomplish much more, in just one hour!

This may sound like an informercial scam, but it is true – for every person you convince to go vegetarian, you double the impact of your life’s choices. So, if tomorrow you hand out 60 booklets to new people, and just one person decides to go vegetarian, you will have saved, in only one hour, just as many animals as you will save with every single choice you make over the rest of your life.

In other words, if we agree that being a vegetarian is important, that standing up and speaking out for the animals and for ourselves is crucial, then we must also recognize that being an effective advocate for the animals is many times more important. Efficient outreach has truly enormous potential; if you think compound interest is a good deal, effective vegetarian advocacy allows for exponential returns!

In his book, Meat Market, Erik Marcus writes:

When I was a teenager, my greatest ambition was to one day be a millionaire. [Later] I adapted the millionaire concept for purposes of activism.... I wanted to [keep] a million animals out of slaughterhouses.... But is it realistic to think that a typical person could keep a million animals from slaughter? Absolutely! ... At two thousand [land] animals saved per new vegetarian, this means that during your life, if you convince five hundred young people to become vegetarian, a million animals will be saved.

With a reasonable level of investment, each one of us can do this. You don’t need to start a group. You don’t need to pass a law. You just need to make the choice to join with the others who are writing their own narrative, who are working for something bigger than just themselves. We can provide you with lessons from decades of experience and all the tools you need. Vegan Outreach exists to help everyone and anyone, in every situation, be the most effective advocate possible for the animals – for a world not just a bit less bad, but for a fundamentally better world.

Leaflets don’t print themselves, however. Vegan Outreach is dependent upon the financial support of those who recognize the importance of effective advocacy. There are many demands on our limited time and money, and we must choose to invest our scarce resources to do the most good. Working to expose and end the hidden horrors of factory farms is, we believe, the best possible investment. Every new vegetarian pays dividends every year, in terms of their food choices and the example they set for others.

In 2007, Vegan Outreach distributed 1.8 million booklets – 56% more than 2006. This was only possible because, from fiscal year 2006 to 2007, contributions to Vegan Outreach also rose exactly 56%. A donation today will lead to more booklets to more people tomorrow, which will lead to new vegetarians and myriad animals spared this year and every year!

In the end, in our hearts, we know that, regardless of what we think of ourselves, our actions reveal the kind of person we really are. We each determine our life’s narrative. We can, like most, choose to allow the narrative to be imposed on us, mindlessly accept the current default, follow the crowd, and take whatever we can.

Or we can actively author our lives, determining for ourselves what is important. We can live with a larger purpose, dedicated to a better world for all.

The choice is fundamental. The choice is vital. And the choice is ours.

Horse pills

Today I was at Ballard Plaza Pharmacy to pick up Bean's medication. It has to be compounded to get the proper cat-sized dosing, which is why I get it at the specialty pharmacy instead of the vet's office.

I was still in need of empty capsules into which I could shove the horribly bitter antibiotic pills. I purchased the largest capsules available at Whole Foods yesterday, but they weren't big enough.

So at Ballard Plaza Pharmacy, I explained my situation and asked if they could sell me some capsules that could accommodate my pills. They took my pills and went into the back. Eventually, the pharmacy assistant came out and explained that the 00-size capsules weren't quite big enough, so they had to move up a size. OK, fine, whatever, just as long as I get something, right?

He holds up the jar. The capsules looked large, but manageable. "I wanted to show them to you first to make sure you could swallow them. We normally use these for horses."

New antibiotics, Day 2

Last night I couldn't sleep. Actually, I fell asleep quite readily, but then woke at 2:45. This has been a problem for some time. One dose of clonazapam will not help me sleep through the night any longer. Yet any more than one dose (which, for me, is 0.5 mg) will cause me to be sedated and hungover the next morning.

So at 2:45, I took some Suntheanine, which sometimes helps me get back to sleep. No dice. So I went downstairs to the couch, where I could obtain a Percy cat, who I like to refer to as my Percivalium--for no mortal can stay awake with a purring Percy on her chest. Or so I had thought.

My brain was drowsy, but the die-off reaction from the new antibiotic was keeping me awake. As with the previous die-off, there is a great deal of "pain" in my legs. I use the quotation marks because it isn't exactly painful. It feels as if the marrow of my bones has been replaced by something very cold, so cold it burns.

I don't know if the pain is actually coming from nerves in my legs or if it's my brain perceiving something that it's "really there." Because the bacteria is in my central nervous system, when they die and cause inflammatory reactions, well, all kinds of weird stuff happens.

Anyway, the best way I've found to deal with the hot/cold/pain sensation is to provide my brain with overriding sensations. For example, a heating pad (brain perceives heat instead of hot/cold/pain) or a large pile of blankets (brain perceives pressure instead of hot/cold/pain). This doesn't always help, and isn't always practical. So I've found myself relying more on my pain meds.

Finally, I should again like to comment that the Ceftin is perhaps the foulest-tasting substance ON THE PLANET. This morning I emptied one of my quercetin capsules and jammed the Ceftin inside as best I could. That worked well enough, and I was able to take the pill without wanting to burn my tongue and throat with acid. All in all, a positive development.

We are not amused

This morning I took my first dose of Ceftin, the antibiotic that replaces Omnicef, which gave me so much grief a couple of weeks ago.

I've been nervous about starting the Ceftin. The Omnicef caused a severe die-off reaction, and I was fairly miserable (in addition to the gastrointestinal side effects). I know that the Ceftin will likely cause a similar response as the L-form bacteria die. (The bacteria that causes Lyme exists in three forms, each requiring a specific type of antibiotic.) But I can't let fear stop me.

During my last visit with my shamanic healer, I went on a power animal journey. I was told very clearly (and loudly) that the one thing I needed to remember was "DON'T BACK DOWN!" And that I must release my fear and stand my ground.

Anyway, I screwed up my courage and took my first dose of Ceftin. Only to discover that the pill is uncoated and has the most foul, bitter taste you can imagine. Now, I knew that the pill could be nasty. The pharmacy information sheet reads: "SWALLOW WHOLE. Do not break, crush, or chew before swallowing because of the strong bitter taste of the tablets."[Emphasis mine.]

So if the tablet is so nasty as to warrant such a warning, why, oh why--for the love of all that is good and holy--is the tablet uncoated?

Surely, you say, I must be exaggerating. It can't be that bad. Oh, dear reader, I fear I speak the truth. For after swallowing my first dose of Ceftin, I nearly retched. Crying out, I ran for the kitchen, whereupon I grabbed a bottle of lemon juice and drank. Swishing the pure lemon juice in my mouth did little to dull the taste of the Ceftin. I spit, and spit, and spit. And then grabbed the sprayer hose from the sink, and directed the full spray into my mouth, leaning over the sink, hoping that this improvised lavage would remove even a trace of the foul taste. Alas! It was not to be.

I think I will have to purchase empty capsules into which I can place the Ceftin tablets. Otherwise I fear that excessive lemon juice consumption will remove the enamel from my teeth. And possibly, due to such unexpected increased demand, cause undue fluctuations in the lemon futures market.

Anniversary

It's my one-year anniversary with "the illness." Last year on Thanksgiving Day, I mentioned that I was feeling tired and thought I might be coming down with a cold. The next day, I started running a fever. And so it went.

I've been bouncing between self-pity and amazement at the positive things this disease has brought into my life. Self-pity is useless, so I try to focus on the journey I'm taking, inching towards wellness.

My traveling companions are Nick, Martin, three pesky cats, an invisible skunk, and a bucket of true grit. I think I'll make it there...or wherever I end up.

No C. difficile for me!

I just got off the phone with the doc. My five-minute conversation cost me $75. We'll see if insurance will reimburse me any of it. Mind you, I don't blame my doc for charging me--he's got to make a living and he provides a very specialized service. It's just the whole health care system is totally screwed up, but that's a rant for another day.

My C. difficile test results were negative. Which means that the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal problems were likely a direct side effect of one of my new antibiotics, probably the Omnicef.

So now I'm going to start taking the azithromycin again, along with the Bactrim. If the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal problems return, we will know that the Bactrim is the culprit. If I do OK, then in two weeks, I'm supposed to start taking Ceftin (the replacement for Omnicef) and see what happens. Hopefully I'll be fine and dandy and unicorns and kittens.

An update in two parts

Update the First:

I recently got some lab results back. The first set is a complete blood count and complete metabolic panel. Everything is normal.

The second set includes TSH, total iron, ferritin, B12, and vitamin D. Everything falls into the normal range, except the B12 which is high.

And I'm still waiting on the C. difficile bacteria test. Hopefully I will hear something within the next couple of days because I want to get back on my antibiotics so I can kick this Lyme disease.

Update the Second:

In my previous post, I called myself another queer, vegan, feminist for equal rights. I realize that the label "queer" may have confused some of my readers. So let me set the record straight: Yes, I'm queer. I am bisexual.

I have been open about this for years--I came out for the first time when I was 16--and I generally assume that people know this about me. However, there are probably friends, family members, etc., out there who never caught on. Even my dear husband had to ask me about my sexual orientation back when we first met, because he assumed I was a lesbian. Good thing he asked.

Anyway, why am I writing about this? I'm happily married, in a secure opposite-sex marriage (I refuse to say "straight" marriage, because only one of us is straight). I love my husband, and I love being married. The license plate on the car reads: THEWIFE. We have a big poster of our wedding vows hanging in our home.

But what if I hadn't met Nick my freshman year in college? What if I'd met a wonderful woman and decided to share my life with her? Then my marriage would not be recognized here in Washington. And with the passage of Prop. 8 in California, it would not be recognized there any longer. And I think it's horribly unfair that my opposite-sex, civil (not religious) Massachusetts marriage is recognized in every state in the country, but a same-sex, civil (not religious) Massachusetts marriage is not. Even if the only thing that changes is a set of genitals.

So I want everyone I know to realize that they know a queer person. So if you hear someone make an anti-gay joke or hateful remark, remember that they're also insulting me. They're insulting your friend. Your family member. Someone you care about.

Anyway, I figure most of you know all this already and have already heard me go on and on (and on and on). But permit me to explain a few things and answer the inevitable questions that arise. Because I think that questions are good. I want you to ask me questions. If this whole bisexuality thing is weird to you and you just don't get it, I want you to ask me about it. The only way we can ever understand each other is through sharing our stories. And understanding leads to compassion, which leads to a better world for us all.

So, question time:

But you're married. Doesn't that mean you're straight now?
No. I'm happily married, but that doesn't mean that my attractions have changed. I still find both men and women attractive. Just like Nick still finds other women attractive.

Does this mean you have to have a girlfriend too?
No. I've never seen gender as anything different than hair color, eye color, etc. So just as I think both blue and brown eyes are attractive, I find both genders to be attractive. I don't have to have a brown-eyed husband in addition to Nick, and I don't need to have a girlfriend in addition to him either. Like I said, I'm very happily married.

If you've never had a girlfriend, how do you know you're bisexual?
Just like you know you're straight/gay/whatever. I can remember back in sixth grade, when everyone started developing silly little crushes. That year I had a crush on both a boy and a girl. This was actually really confusing to me for a few years. I mean, I knew that most people were attracted to people of the opposite gender. And I knew that there were gay and lesbian people. So I thought that I just needed to pick one. Because I knew that people would never question me if I were straight, and that most people would come to accept me as gay, but bisexuality was never discussed as an option. Eventually I read something in a magazine that mentioned bisexuality, and it was a light bulb moment. There was a word that explained what I was feeling. And there were other people like me!

So, no, I've never had a girlfriend. I married the first person with whom I was in a serious, long-term relationship. We met when I was 18, and he's managed to put up with me for twelve years (and counting!).

How come you never told me? Or, why are you saying all this now?
If I never told you personally, it's because I figured you already knew. Or I figured that the conversation would be awkward, especially since I am married and bringing it up would make you think about my sex life, which I probably don't want you thinking about. And you probably don't want to think about it either.

So why am I saying all this now? Because either you already know and are totally bored by this, or you didn't know and this might influence you to either support gay rights or to be more vocal about that support. After Prop. 8 stripped same-sex couples in California of their previously legal marriages, I realized that this fight is not over. It's only just begun. And we will win. And part of winning is speaking out and gathering support.

Why do you use the word queer? Isn't that derogatory?
I prefer to say that I am "queer," rather than "bisexual," because "queer" has a political connotation. We are reclaiming words directed towards us in hate and making them our own.

End of questions. However, if you have more questions, please ask. Seriously. I'm not shy about who I am, and I'm happy to explain myself further.

And, please, remember that we--the queer community--are everywhere. We are your sisters and brothers, daughters and sons, aunts and uncles, nieces and nephews, neighbors and friends. We've all got to share this little world together. We all deserve compassion, and we all deserve love--even if that love looks a little different.


Seattle Stands AGAINST Proposition 8! from Eli Martin on Vimeo.

Just another outspoken queer, vegan, feminist for equal rights

Despite a horrible headache and crushing exhaustion, I managed to drag my sorry self out to the Seattle marriage equality rally and march today. Nick and I were two of the approximately 6,000 Seattlites who joined hundreds of thousands of people worldwide who spoke out for the right to marry. (While Seattle police put the initial count at 6,000, I'd guess that we had something like 10K or more people out there once the march made it to downtown.)

The rally begain in Volunteer Park, and then everyone headed down to Broadway, then over to downtown on Pine. We ended up in Westlake Center, and the crowds were so large that the police had to close off surrounding streets. All along the path, there were supporters cheering from the sidewalks, business doorways, and apartment balconies.

It was a beautiful outpouring of support, and I'm really glad I made it to the event. I might pay for it tomorrow, but it was worth it.

Still unpleasant

On Sunday I wrote about my new antibiotic and how it had HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal side effects. While I stopped taking the antibiotic on Sunday, and the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal side effects eased up slightly for a day or so, they came back with a vengeance on Tuesday. I spent all day yesterday waiting for a call back from the doctor. I finally heard from his assistant around 7 PM.

I was told to come in this morning (Thursday) to pick up a stool sample kit to bring to a lab to determine if the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal problems are actually being caused by C. difficile bacteria. It's common for people taking antibiotics to develop an overgrowth of this bacteria, which can lead to pseudomembranous colitis.

I shall spare you, sensitive readers, the details of my visit to the lab. They are as unpleasant as you might imagine, though quite funny on a third-grader-poop-is-funny level. Which is the level I am usually operating on.

Of course, because it's Thursday, it is highly unlikely that my lab results will be available until next week. I have a phone consultation scheduled with my doctor next Friday (Nov. 21) to discuss what all this means. In the mean time, I have stopped all antibiotics. So I'm now imagining the Lyme bacteria having a freaking party in my body, doing keg stands like frat boys and popping off babies left and right.

Oh, and have I mentioned the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal problems? I guess I get to live with them until...whenever? Because I'm having soooo much fun.

My acupuncturist this morning diagnosed me with "cold in the large intestine" (it makes sense in Chinese medicine). He treated me for that, and I'm going to try to eat "hot" foods in the hope of managing some of the HORRIBLE DISGUSTING TERRIBLY AWFUL symptoms. I've been taking ginger supplements, which seem to help a little. (Ginger is a "hot" food.)

So...yeah. Still pretty unpleasant around here. But at least I get to make totally immature third-grade poop jokes. That always makes things better.

New doctor report

Today I saw my new primary care doctor, Dr. Kneisl, at One Sky Wellness. While I didn't have any pressing medical concerns for her to address (Dr. R is handling my CFS/Lyme care) and therefore cannot completely assess her abilities as a physician, I definitely liked her personality and style. She didn't bat an eye when she saw my Lyme treatment protocol, and said she was really glad I'd found someone who was giving me appropriate treatment for such a complicated disease.

Also, she's worked with First Nations health care, which has given her an interest in and respect for shamanic healing. (Whereas in Oklahoma, the tribal health care centers were staffed with bored, overworked, and generally uncaring doctors who didn't seem to learn anything from the job, other than a contempt for humankind.) She seemed excited when I mentioned my shamanic healer, and she even said she'd recommend her to other patients who were interested.

So, yes, she's very open-minded, but also has a Western medical background, which to me is the best of all worlds.

I'm getting my vitamin D, B12, iron/ferritin, and thyroid levels checked again. It will be good to know where I stand on all those potential problems. (The doc said that 95% of the people she see in Seattle are vitamin D deficient! Yikes!) I think I should be fine on the D, B12, and iron/ferritin; mostly I want to make sure I'm not overdoing it on the D and iron, now that I've been heavily supplementing for a while. I will definitely be interested to see what my thyroid numbers look like now that I'm on meds.

Other news: 1) I'm getting a massage today. Happy dance! 2) No word back from Dr. R yet about new antibiotics, but I should hear from him later today.

Medication update

I'm feeling much better now that I've stopped taking the offending antibiotic. This is good (horribly gastrointestinal side effects going away) and bad (I think it was working to kill off the Lyme bacteria). I fear that the joint pain was a sign of a die-off reaction, meaning that the nasty little bastards were being killed. Which is good.

Still, I obviously can't take the antibiotic, and today Dr. R will probably have a new prescription for me.

I'm also going to meet with a new primary care physician in about thirty minutes. Stay tuned for the report! Hopefully she'll be cool about my Lyme treatment and about my being vegan. The latter is typically not a problem, especially once I prove to be more educated about vegan nutrition than most doctors. The former...well...there could be issues. (See the Lyme War.) But that's why I'm going to a holistic practice, so I think my chances are pretty good of finding someone open-minded and at least vaguely knowledgeable about Lyme.

An unpleasant weekend

I started taking the Omnicef (new antibiotic for the spirochete form of Lyme bacteria) last Thursday. By this weekend, every joint in my body ached. Last night I woke up at three and couldn't get back to sleep because everything just hurt. I took more Vicodin, but it didn't cut it.

This is likely a die-off reaction as the spirochetes are attacked by the new antibiotic. So it's good that the medication works, but bad that it's painful.

And I'll protect your delicate sensibilities, dear reader, by glossing over the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal side effects of the drug. Side effects that were severe enough to warrant a call-back from my doctor on a Sunday.

So while the Omnicef was working, I'm supposed to stop taking it. Of course, I got the call about ten minutes after I took my morning dose. Just my luck. Anyway, Dr. R will be back in the office on Tuesday, and he's thinking about what new antibiotic to try instead of the Omnicef.

So now I have a nearly full bottle of Omnicef, along with a matching bottle of Rifampin, both of which I'm not to take any longer. It's frustrating knowing that somebody without medical care could otherwise benefit from these drugs, but I've just got them sitting around in my medicine cabinet. Anyone know if there's a drug donation program? I feel bad just throwing away $250 worth of antibiotics, even if the personal cost to me was a mere $20. (I'm so glad I have insurance. This disease is expensive enough without having to pay full price for the drugs.)

Good cat

Even when I'm not feeling well, I can count on having a kitty around to nap with.



Good kitty.

Don't stop believing

I LOVE MY CITY. Don't stop believing, Seattle.



CNN:



A crowd of liberal hipsters spontaneously break into the national anthem:

Medical Update

Now that the election madness is finally winding down...whew! I'm still a little giddy from yesterday, and I imagine I'll be crashing pretty soon. It was totally worth it. Totally.

I saw Dr. R again today. Here are the new developments, in no particular order:

1) My overly sensitive nose (dubbed "Supernose" for short) might be a side effect of the Rifampin I've been taking for the bartonella infection. So I'm switching from Rifampin to Bactrim. I'll probably be taking it for another five or six months. And I'm hoping that the Supernose will go away.

2) To combat the nasty die-off reactions I've been having, I will be taking yet another supplement. It's an antioxidant mix called FibroBoost. It, along with the quercetin I'm taking, will hopefully limit cytokine production and thereby prevent some of the unpleasant die-off symptoms.

3) I'm to continue taking nystatin to prevent yeast overgrowth from coming back, but I'm done with the diflucan. Yipee!

4) I might switch up my sleep meds because the currently prescribed dose of clonazapam is leaving me a bit sedated in the morning. I may switch over to Ambien CR, but I need to discuss this with one of my other doctors first.

5) I'm getting fat. Well, not fat, but I am gaining weight now that my appetite has improved. While it's good that my appetite has come back, I simply can't be as physically active as I used to be (at least not yet). So I'm gaining back the weight I lost. I can still wear all of my old clothes, but if I don't get a handle on balancing caloric intake/output, it'll be time to go shopping for some new jeans. So I need to figure out how to eat enough good things, while keeping the calorie in line with current physical limitations.

6) I'm adding a new antibiotic to my regime. As I've mentioned before, the Lyme-disease-causing bacteria, B. burgdorferi, can change form inside your body. It exists in three forms: the spiral shape that has a cell wall, the cell-wall-deficient form known as the "L-form,", and the dormant or latent cyst form. I'm currently taking azithromycin for intracellular Lyme. Now we're adding Omnicef as an anti-spirochete drug. Eventually we'll add another medication to fight the cyst form of the bacteria. It's important to eventually treat all forms of the bacteria, because it's a tricky little bastard and can morph between the three forms if it is threatened on one front.

7) Next week I'm meeting with a new primary care physician. I'm moving to a holistic practice that employs MDs, NDs, acupuncturists, massage therapists, etc., in the hope that my doctor there will be open-minded and somewhat knowledgeable about Lyme disease (unlike conventional infectious disease physicians and internists). Also, it will be refreshing to have a primary care doc who doesn't dismiss "alternative" treatments but who also has the benefit of Western medical training. I hope it goes well.

8) Later this month will mark the one-year anniversary of my illness. I got sick on Thanksgiving day last year. Hopefully this year will bring a little wellness along with the pumpkin pie. (Or pumpkin ice cream!)

Summary:

It looks like the yeast overgrowth has been successfully treated. Now we're focusing our attack on the B. burgdorferi and bartonella. We're using Bactrim for the bartonella, and azithromycin and Omnicef for the B. burgdorferi. More antibiotics mean that I can look forward to more side effects and die-off reactions. But it might just also mean that I'll get better one day.

New med list:

Azithromycin, Omnicef, bactrim, nystatin, clonazapam (may change), vicodin, sertraline, Astelin nasal spray, Yasmin, 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, FibroBoost, and B12.

It's still real

I was kind of afraid that maybe the victory was a giant sham, pumped into West Coast televisions to prevent riots. But no, it's real. It's really really real!!!

Because I ended up in Georgetown, I missed the thousands of people marching and dancing and celebrating in the streets (in the University district, in Capitol Hill, in Belltown) last night, but I found pictures:







I'm thrilled that Obama won, and I LOVE MY CITY! The riot police stood around and watched...one officer described it as a "big hug fest."

So despite the disgusting success of Prop. 8 in California (banning same-sex marriage), I'm filled with hope and love and joy.

I might not have had the energy to keep up with the revelers who were still going at 2:30 AM last night, but for now, I'll get up and dance around the room.



Some more thoughts:

1) McCain's concession speech was classy and made me remember why I used to like the man, before he became Campaign McCain and turned nasty. Now that the campaign is over, he can be the senator I remember. His speech brought forth cheers and applause (sincere, at that) from a crowded bar of liberal hipsters in godless Seattle. (Well, except when he mentioned Palin.)

2) Obama's speech made me cry. Not easy to do. "It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, disabled and not disabled - Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America."

You should have heard the cheering in the bar when he said not only "black, white," but went on to include other ethnic minorities. And then "gay"--the crowd thundered so much that I would have missed "disabled and not disabled" but for the captioning. And, yeah, it made me cry.

3) Cutest thing ever? ""Sasha and Malia, I love you both so much, and you have earned the new puppy that's coming with us to the White House."

4) OMG IT'S REAL:

Yes, we did!

After discovering that The Stranger's election party was filled to capacity, Nick and I made our way to the Georgetown Liquor Company, a bar serving vegetarian fare and, naturally, booze. We watched the election results roll in on the television, and I screamed and clapped and cried along with my fellow Seattlites.

I'm so hyped up right now, I fear I won't get to sleep anytime soon. But it's totally worth it. History has been made, and I can suffer a little tomorrow for staying up too late to watch it.

In addition to the Obama victory, it looks like many of the local races in Seattle and Washington are going as I'd hoped. And the NY Times just called a Yes win on Prop 2 in California! So a good night.

I'm so excited, hopeful, and proud. This is an amazing day. Wow. Just wow.

Vote

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.