The medical report

I saw my LLMD last week. I reported to him that, over the past few weeks, I'd seen slight improvement. Nothing dramatic, but I'd gone from my baseline of "20% of normal" to something like "25 - 30% of normal." (Where normal = pre-Lyme.) I had a little more energy (minus the four o'clocks), and I'd been able to read three whole books! A miracle!

Dr. R says that this is a really good sign. Generally speaking, he says that 30% of patients see some improvement after 3 months of treatment, 60% after 6 months, and 90% after 9 months. I'm right at the 9 month mark of treatment.

So since I'm feeling better, it's time to ramp up the treatment. It's a roller coaster--you treat, get worse, get better, and then increase treatment so you feel worse, then better, so you can increase treatment again.

So here are the changes to my treatment and other bits of news from my appointment:

1) Heavy metals testing. Got the results back. I have elevated lead levels--not surprising since I grew up next to a lead-mine-turned-Superfund-site--but not elevated enough that he thinks we have to specifically address it. This makes me nervous...I don't like the idea of elevated lead in my body, but I figure I'll address that concern after I make it a little further along the path towards wellness.

2) The four o'clocks. Dr. R suspects that this is a sign that my adrenals are still not functioning correctly. I've been taking ashwagandha, but it's not quite enough. So I've started taking 5 mg of hydrocortisone in the afternoon. While steroids are generally very bad for Lyme patients, I'm taking a very small dose that is only making up the difference between what my body should be producing and what it actually is. I've been taking this for a week now, and it's made the four o'clocks a little more bearable.

3) Viral infections. Remember a long time ago when I said I had high EBV and HHV6 titers? And that those chronic/reactivated viruses might have a role in why I was so sick? And that we hoped with Lyme treatment, my immune system would get strong enough to fight them down on its own? Well, given my relatively slow progress, it's becoming more likely that the viruses aren't going anywhere. So I've started an herbal antiviral, monolaurin. I'm supposed to ramp up the dosage over the next two weeks, depending on how I'm feeling.

Conclusion: My appointment was last week. I've been on the new meds since then. I think that the monolaurin might be causing die-off, or I'm just back in another Lyme die-off cycle. Because after feeling just a teensy bit better for a few weeks, I'm sliding back downhill.

The physical exhaustion is nausea-inducing. I have no stamina, and my cognitive abilities are slipping. Reading is harder. (So glad to have audiobooks.) Writing is harder. (So glad to have spellcheck.) Concentration is harder, and there's nothing that really helps with that.

So it kind of sucks right now. But I've been sicker than this before. And I made it back up the hill. So I'm trying to remember that. I'm sliding down, but I'll climb back up again. I hope.

Sidewalk strawberries

Today I checked my little strawberry patch by the sidewalk. My reward:

I made a small batch of oh-my-goodness chocolate ganache for dipping, but the strawberries are actually so good that the chocolate shouldn't be allowed to distract the tastebuds.

So I also made some peanut butter fudge, and will combine that with the ganache. Sugar party at my house. Right now.

Gardening delights

In the last few days:

I have harvested a few pints of strawberries from my little patch near the sidewalk. One particularly hot night, Nick and I skipped cooking and had cold museli topped with freshly picked berries. It was, perhaps, the best meal we've had in weeks.

One batch of lettuce is crying out to be harvested and eaten. I have at least three other varities that are growing more slowly, so we'll have garden-fresh lettuce for some time.

Two of my tomato plants are growing vigorously, while the third is looking stunted. Strange.

The city of Seattle now allows all recycling to go into the big green bin, so we no longer have to separate our glass. The glass bins could be given back to the city for recycling themselves, or residents could keep them. I have turned my bin, as well as that of a neighbor, into temporary raised beds. One houses two tomato plants (the healthy ones), while the other is nurturing a collection of herbs and butter lettuce.

The Douglas asters in my back yard are shooting skyward. One is taller than I am. They have not yet shown any indication that they will bloom soon.

The gigantic lupine near the driveway, planted just last year, is trying to take over the world. Some of the blooming spires are over five feet tall, and there are at least a couple dozen flower shoots. It's like a towering buffet for the bumble bees. I love to sit next to the plant and watch them zoom around, digging in the flowers and pushing each other around. This is a development that friends will no doubt find difficult to believe, given my lifelong phobia of bees and wasps. But the more time I spend in the garden, and the more I listen to the bees, the more my fear turns to fascination and awe.

Finally, one cool evening I took the time to sample the nectar from a torch lily. It was given to me by a neighbor who had many seedlings sprouting up in her yard. This spring it shot up in glorious color. The nectar was sticky and sweet and tasted softly divine.

The four o'clocks

My current stop on the Wheel of Symptoms includes what I call "the four o'clocks." Because every day, sometime between four and six, but usually right around four in the afternoon, I crash.

Like, crash hard. I get dizzy, vaguely nauseated, and so sluggish I can barely move. It's nearly impossible to stay upright and awake. But if I take a nap--even a short nap--I wake up feeling worse than before. I'm not sleepy anymore, but my head hurts and I feel like I've been wrapped in heavy, wet blankets and left to steam in a locked car.

I've no clue what causes the four o'clocks, unless my cats are slipping me a roofie every day so they can get into trouble without me knowing. There's no predictable pattern. It doesn't matter what or when I eat, which medications I've taken, when I got up in the morning, how I slept the night before. Maybe my cats are drugging me. They're fairly crafty.

As the crow flies

Yesterday I saw two beautiful crows land in a neighbor's tree. I said hello and expressed my admiration for them. I asked if they had any wisdom to share with me. One of them looked right at me and said, "Must suck, not being able to fly."

When trying to get from point A to point B, it's rare that we get to travel in a straight line--as the crow flies. My journey towards wellness certainly hasn't taken me down the straight or easy path--but if it could have, then I probably wouldn't be sick.

Anyway, a lot has happened since my last substantial update, but there's not a lot to show for it. There have been a lot of subtle energetic shifts, both for me and around me. Rose, the Reiki and shamanic practitioner I see, came to our house to help us with this weird energy that I couldn't handle by myself. I couldn't describe what it was like, exactly, but Rose--after a puzzled moment--said, "It's like the ground isn't grounded."

Rose did some work, and we are planning to have an Earth despacho for the land on which our house sits. (I do not like to say "the property," since I don't think we actually "own" the land in any real sense.) There was some crow medicine moving stuff around, and I think the land/house/enviroment in which we reside, has started to breathe. Something stagnant or stuck has shifted, and I can feel tiny little movements as the energetic currents move and flow and find their true course.

The same has been happening for me on a personal level. All of it is very subtle, and if I tried to describe it, I'd sound even vaguer than I did above when describing the Earth energies. But some deeply rooted stuck energy is shifting; some of it is even finally being released.

I am feeling more grounded, connected, though there's still a long way to go.

Physically, I think I'm maybe possibly feeling a little bit better, too. I'd say that I've moved from the previous baseline of 20% of "normal" to something closer to 25 or 30%. Small, but it's there. I can't help but fear that this means I'm about to crash into another die-off/herx cycle, but I'm trying to enjoy what I've got.

I read a book. I did a few minutes of yoga. I planted tomatoes and peppers. All things that are small and simple, but represent a little forward movement. Even if every day between 4 and 6 PM I crash with a headache and nausea. Even if my sleep is restless and interrupted. Even if reading, yoga, and planting leave me far more exhuasted--mentally and physically--than is at all reasonable.

Yeah, it sucks not being able to fly directly where I want to be. But it is what it is, but crow medicine is that of magic, creation, and strength. And that is worth remembering.

Motivation

As if I didn't need something else to motivate me in my journey towards health....



I really want to get back to both yoga and burlesque classes!

Adventures with Bicillin!

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

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

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

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

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

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

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

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

And today in brain fog...

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

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

Medical report

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

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

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

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

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

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

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

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

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

I am such a cheap date.

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

Kicked in the heart

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

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

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

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

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

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

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

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

Shorn and pierced

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

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

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

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

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

Tomorrow, more fun with needles: IV glutathione.

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

The only thing different, the only thing new

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

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

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

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

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

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

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

Absolutely ridiculous.

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

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

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

Lyme on the radio

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

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

Tired of being tired

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

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

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

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

Bite-size Happiness

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

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

You're welcome.

Report from the LLMD

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

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

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

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

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

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

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

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

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

Wheel of Symptoms

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

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

I see my doctor again next week.

Obligatory Update

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

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

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

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

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

Captain! She's sprung a leak!

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

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

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

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

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

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

Sigh.

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

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

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

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

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

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

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

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

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

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

Another diagnosis

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good and bad

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

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

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

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

Insurance company? Yes, I still hate them.

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

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

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

I. Hate. My. Insurance. Company.

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

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

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

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

What I should have said was nothing

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

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

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

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

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

I put a spell on you

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

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

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

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

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

Fast living. Crazy fun.

My heart aches, and a drowsy numbness pains my sense

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

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

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

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

Keats and zombies. At least I have diverse interests.

The Starfish Project

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

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

However, most people don't know someone else who needs (and has been prescribed) the exact medication they have sitting, unused, in their medicine cabinet. So I wanted to let you know about The Starfish Project. About them:

The Starfish Project collects the unused "leftover" medication from patients in the United States who have stopped or changed their antiretroviral (ARV) therapy. All drugs have patient identification removed before they are sorted, labeled, and shipped to our partner clinics in Nigeria.

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

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

This same flower

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

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

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

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

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

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

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

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

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

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

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

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

Injection 3: The Reckoning

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

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

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

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

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

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

Disappearing a disease

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

The Lyme Basics

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

Dr. Joseph Burrascano writes,

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

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

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

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

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

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

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

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

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

Here's what I know:

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

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

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

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

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

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

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

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

My husband shot me

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

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

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

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

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

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

Always be prepared

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

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

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

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

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

Theories of infection

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I think I'll win.

Happy birthday to my wonderful husband!

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

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

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

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

It makes me do a little happy dance.

More from the wacky world of health insurance

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

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

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

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

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

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

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

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

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

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

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

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

The weariness, the fever, and the fret

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

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

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

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

What else?

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

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

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

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

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

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

An Expert in Cat Pee

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

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

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

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

No Bicillin yet

ARGH! Stupid insuance company. Stupid pharmacy.

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

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

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

Performance Art

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

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

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

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

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

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

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

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

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

In Neurological Terror...

I just forgot how to climb stairs.

Seriously.

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

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

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

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

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

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

And the rest of me is absolutely terrified.

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

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

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

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

Snacking

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

This means no more bedtime snacks.

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

Medical Update

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

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

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

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

The schedule for all of this is as follows:

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

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

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

What goes up...

Every time I start to get optimistic and write something like "I think I'm finally making some headway against the neurological symptoms of this disease" or "Neurontin (generic name: gabapentin) has so far been a big hit," reality steps in and hits me in the face with a frying pan. And instead of little stars and twittering birds dancing around my head like in a cartoon, I get laughing spirochetes. They mock me. Jerks.

The last couple of months seem to have followed the same pattern. I'll feel like crap, suffer through a die-off reaction, then slowly start to feel a teensy bit better. Then I'll have four or five days where I begin to think "Gee, maybe I'm getting better!"

At first I'm nervous because I don't want to over-extend myself (a major flaw of mine), so I'm really cautious. Then after three days, maybe four, I think it's going to stick, so I make plans about what I'm going to do. I'll start a project. I'll get excited.

And then--BOOM--just when I think things are looking up, I come crashing back down.

I was feeling (relatively speaking) pretty good from December 20 - 25. I signed up for classes at the Tai Chi and Qi Gong studio nearby. I almost finished reading a book. I went on a long walk through the snow. I had coherent conversations!

And then I declined. On Monday (December 29), things started to get pretty rough. By today, I just couldn't get out of bed. I tried. Failed. I eventually rolled out onto the floor and crawled my way over to a chair that I used to pull myself up to standing.

I'm taking a sick day.

It's been difficult emotionally. The brain fog has returned, along with the word-finding difficulty. Yesterday I found myself standing in the aisle at Whole Foods, cart full of groceries, wondering what I was doing. What was I supposed to do next? I had a piece of paper with all of the items crossed off. So what now? What do I do?

I guess "What now?" is the ever-present question in chronic illness. All of my excitement and my plans have been put on hold...again. From yoga to reading to cleaning up my snow-and-ice-damaged garden, it's all on hold. Indefinitely.

I am not good with the indefinite. I like time lines and lists and organization and plans and expectations. Without these things I feel lost. Honestly, it terrifies me. My entire life has been a quest to find order in chaos, to establish that I have power and control in my own existence.

At the heart of my Lyme struggle--physically, mentally, emotionally, spiritually--is a search for balance. To find peace between order and chaos. Perhaps wellness lies between illness and health. Perhaps wellness is balance.

Addendum: I just read over my post and something hit me. What are my plans for this evening? Why, I'm attending an anyi despacho ceremony, lead by Rose De Dan, the woman I see for shamanic healing. And what is an anyi despacho ceremony? Rose writes:

A despacho is an ancient ceremony that melds the assembling of consensual reality (the world we all agree exists here and now) with offerings and prayers to the Spirit World for the creation of ayni (balance and harmony) in our lives, healing and release of energies that are standing in our way of fully stepping into who we are becoming--our limitless possibilities.

Hmmm...fitting, no?

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.