Wednesday, April 29, 2009

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.

Monday, April 27, 2009

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:

Friday, April 24, 2009

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:

Monday, April 20, 2009

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.

Friday, April 17, 2009

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.

Sunday, April 12, 2009

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.

Saturday, April 11, 2009

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 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.

Thursday, April 2, 2009

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.