Thirty things about my invisible illness you may not know

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

1. The illness I live with: Chronic Lyme disease

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

3. But I had symptoms since: November 2007

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

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

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

7. My favorite medical TV show is: House.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Le jardin

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

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

From seed: two varieties of radish.

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

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

Back from the doctor

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

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

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

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

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

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

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

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

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

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

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

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

Early AM:
Levothyroxine

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

Mid-morning:
Lumbrokinaise
Multivitamin
Ashwagandha

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

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

Bedtime:
Clonazapam
Lumbrokinaise
Sublingual B12

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

A sojourner in civilized life

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

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

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

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

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

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

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

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

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

Growing stuff makes me happy

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

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

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

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

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

An open letter to the Internet

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

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

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

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

I stink.

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

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

Anyway. It was hot. And I was sweating.

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

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

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

All in all? Yuck.

Brevity

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

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

Reading is increasingly difficult again. Concentration falters.

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

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

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

Generic Bicillin

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

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

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

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

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

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

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

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

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

The videos, in order:









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

Nothing new

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

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

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

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

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

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

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

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

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

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

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

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

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

The medical report

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.