Tuesday, May 24, 2016

This is how we kill the bad things

Thank you to Jeanne, Erica, Karen and Sri. Check your mailbox soon. 
First, some business: If you're just joining us, would you like to read my Lyme story from the beginning? Catch up a bit by clicking here.

If you'd like to listen, I recorded an episode with The Dirbag Diaries. Click here to listen to The Miracle of Darkness. 

Now. On with the story.

Can I get a hallelujah? Because we're done with the Mepron. At least for the next two weeks. Actually, I haven't received the next treatment regiment, the one that comes after I complete the Lyme Biofilm and Babesia Protocol Part B, so perhaps we're not done forever. But for two weeks at least I don't have to swallow the Mepron and for that I'm happy. 
Mepron, also known as Atovaquone, is a liquid antiparasitic and antifungal that is used in Lyme patients to treat Babesia, one of the many co-infections that the tick transmits when it throws up its blood meal into your body.

Mepron is neon yellow and has an instant numbing effect on the mouth and throat, and because it's so foamy and buoyant it's difficult to get all the way down the tubes. It stains the measuring spoon, your fingernails and your teeth. I used to swallow it over the sink each morning, but it came back up so often that our sink and any dishes in the sink became splattered in what looked like thick yellow paint. Now I take it over the toilet. Swallow, throw it up, spit up out, swallow again, clamp my mouth shut, keep it down.

Thumbs up on whatever the Mepron was doing to my invaders, but I hated what it did to me. One odd side effect of the medication is that it makes it difficult to talk. I'm not sure how much of this was Lyme and how much was the medicine, but for the last few weeks I've stuttered, lost my thought mid-sentence, got caught up on my S sounds ("Dinner tonight? That ssssssssssssssssounds like fun") and my T sounds ("I've been having a little T--------------t----t-ttttttttt-trouble T---------t-----t-tttttalking lately.") It's been sssssssssort of tttttttttttroubling. 
This week is all about the Coartem tablets. Coartem is an antimalarial, and I'm taking it alone this week without any antibiotics or cyst-busters, no cipro, no omnicef, septra, enula, artemisinin or lactofernin. This week is a direct attack on the Babesia, a malarial-like parasite also known as a piroplasm that infects red blood cells. It's the culprit behind the drenching night sweats, air hunger, my constant need to yawn, yawn, yawn, nonstop, for hours at a time. It's the reason I run out of breath in the middle of a sentence and have to gulp in air like an excited toddler, and the reason why my liver is painfully enlarged.

I'm telling you. Lyme Disease is no joke. 

A friend of mine who lives in Africa gave me some gentle advice about the Coartem. "Try not to lie down after you take them, because they can get really lodged in your throat." She said. And then, carefully, as if it were a casual aside: "They also have been known to bring on a little fever."
Last night we had dinner early. On Mondays, David only has an hour break between work and Real Estate School which he attends at night, so we eat around 5:00pm. I swallowed my four Coartem tablets and had the kitchen all clean by 6pm. I thought I'd take a little outing up the street- we'd run out of lemons- but halfway to the door I suddenly felt like I was swimming and if I didn't get to bed that instant, I might lie down on the floor and die. It seemed like breathing was no longer a reflex- I had to focus on drawing each breath, letting it out, taking another one. If I could just keep breathing, get to bed, keep breathing. What is my job? My job is to get to bed. To keep breathing. That's my only job in the whole world. That's all I have to worry about.

Seeing how it was the early evening in late spring, it was very bright out, and I still haven't gotten around to putting up curtains in my room. I lifted the dog into bed and crawled in next to her. What is my job?  I was freezing, so I got up one more time to close all the windows, then fell back in bed, dug myself a spot beneath the flannel covered down comforter. Keep taking breaths. I remember one final thought before I tumbled into a thick sleep swimming with strange creatures- "What is my job? My job is-" 

David came home a little after 10 and found me burning up in my bed, slick with sweat and smothered in blankets. I woke up just briefly as he threw open the windows and yanked the comforters off of me. The dog startled and rolled over onto her back. The next part I either dreamed or it really happened- Dave was sitting next to me with a bucket and a blue cloth, wiping my forehead and murmuring, "It's okay sweetheart, fevers are how our bodies kill the bad things." To which I replied, or I think I replied, "I never get fevers." 

My friend Steph called me the other day. Stephanie, who has been through her own 16 month long journey to hell and back. "Is this real?" She asked. "Is this actually happening? I keep wanting to believe this is just some dramatic story you're telling."

I think it's real, Steph. Although I'm just catching up to that fact. I think I've been in denial for a long time about this situation, how serious it is, how long it might last.

What is my job? 
Join me on Instagram: @thewildercoast & @theglowery

If you're interested in helping me get better, here is how, here is why, and here is how I'm going to say thank you.


Liz Stout said...

Ack. I sincerely hope the following days of this drug are not so extreme. I can understand that feeling though. And I have experienced ridiculous side effects from a drug and know how wicked they can be. Happy sounds and happy visions dancing on the television/computer/book page can help. I'm sending you positive vibes...

Tammi Salsa said...

I've been reading your blog for years and never left a comment (that I can remember). Your story is beautiful + heart-wrenching. I'm rooting for you + send you only good thoughts + wishes for healing.

I'm taking a workshop with Nici Holt Cline this weekend in Northern California. I found you through her blog oh so long ago. You are a beacon of light + hope, Melina.

I'm 15+ months sober + always appreciate + gain inspiration when a woman shares her truth + her story. You are a badass. XO!

Maria said...

Love to you. We can fight this. Sharing our stories, resources & insights are vital. Thank you. I am so sorry you are suffering from Nuero- Lyme, too. 💚

Jaime said...

I tear up every time I read a post from you lately. I am so sorry that you going through this Melina. It just seems so unfair, and I truthfully can't find any words that will make it better. Your husband is very sweet. I actually ugly cried after that part. That is true love right there.

Jaclyn and Tyler said...

Following along. And glad to know specifics, so I can think good thoughts and say clear prayers for you sister. Shares your story with the hub in bed last night as he had come across your podcast when making his way through dirtbag diaries on his work commute. I told him I want so bad for you to have a baby when this is all said and done...when it's your time. I really want that for you. That's my big ask...my big prayer.

Erin said...

You are so brave, Melina! Your courage is seriously badass. I want to donate when I'm more flush, things are crazy tight right now. Just know that I really am sending you tons of good juju cuz I'm witchy like that. I know it sounds cheesy, but your courage truly is inspiring. I define courage as having the strength to share the contents of our hearts. Speaking your truth and shining a light on lyme is helping so many people. I hope you get some relief STAT!

Anonymous said...

Just an idea... For liquid medication that's hard to swallow have you thought of putting it into empty capsules and walking it that way? You can buy veggie capsules of various sizes online ;)

Ashley @westiswild said...

Your job-to care for you. That's it. Anything extra-your sweet, sweet husband. Someday, you'll be a caretaker again. It's ok that it isn't for others just yet.

Please keep writing, keep sharing. It will help others so much to read about this terrible disease, and to be encouraged by your tremendous recovery. I claimed it for you last week, and I'm doing it again.

SJJ said...

I love you, hang in there, this will end.