Thursday, October 22, 2015

A little Lymey Lyme update

I haven't updated on my Lyme since July, so I thought it was due. Even if it's just for me to look back on years from now when it's in remission to remind myself of everything I went through to put it there.

October marks a year since I had the potential diagnosis of Lyme; since I started tests to confirm the diagnosis. I can't believe it's been that long. I'm coming up on my year mark since I began treatment. 1 year on antibiotics.
Since July I've had a lot of ups and downs with my treatment. My Dr. has taken me off of Malarone, which is used to fight babasia, a common Lyme co-infection and started me on a tincture instead called Sida Acuta. Unfortunately for the first time in my life I'm having an allergic reaction to something. I get large red bumps that randomly pop up and itch endlessly. I'll have 10 or so for a week, and they'll finally fade away to just make room for another set of itchy bumps to pop up.
She also started me on a new antibiotic called Refampin. It supposedly targets the body differently than other antibiotics and every time I pick it up the pharmacist stressses using a backup method of birth control. Thanks for the psa, I think I get it.

In September I started having a relapse of herxheimer reactions, where you have too much die off and your body is filled with toxins, and you feel like you're gonna die. It had been months since I had a full blown herx, so it was kind of a surprise to have some when my medication hadn't changed in a while.
Unfortunately they continued for a while. I had days where I woke up so exhausted I literally couldn't get out of bed. It's a level of exhaustion that I can't really explain, but it's not your average level of tired.

I saw my Dr. recently and my medicine regime is starting to change yet again. She wants to start phasing me off of antibiotics now that it's been almost a year, and replacing them with herbal tinctures instead. I've just started the tinctures and have to build up to something like 30 drops of each twice a day. I've also started weaning myself off antibiotics, I'll be doing three weeks on, one week off. I was kind of surprised when she suggested this because I've been so sick.
I bought this heat bed from my Dr. It's this little bed like thing I lay in that goes up to 108 degrees over 40 minutes while you just sweat your brains out. It's actually been the best thing for helping my treatment. Sweating out all the toxins has led to no sick days for the first time in over a week.
So my treatment is changing yet again and I don't really know what to think. I trust my Dr, but it's hard to feel like I'm ready to go off antibiotics when I've been so sick lately. I've been so lucky to have Hal spend all his spare time to take care of me, and friends be so kind and bring me a care package. Sometimes treatment and symptoms can be so overwhelming, but it's really comforting to know I'm surrounded by people who care about me. 

4 comments:

Judy Morgan said...

Oh Sam, I'm so sorry. My heart sank and I got a little panicky when I first heard you might have Lyme. I didn't want you to have to go through all this, little one. I know you are on your way to getting healthy and strong. Love you! Judy

John said...

Hi Sam,

I was watching a show this morning about a lady with Lyme's and how she had worked so diligently to get to remission. She mentioned how happy she was the first day she could go up a flight of stairs without having to rest. I thought of you and said a prayer for your remission. I am so proud of you and how you have fought your way to where you are.

God sends friends and loved ones to be His helping hands. He is mindful of you.

Love you,
John

John said...

PS Loved the cat photos! :)

Selma @ Crazy Little World Of Mine said...

If we lived closer I'd come over and give you a hug! So sorry you have been going through this and yet another change in medication. Ugh. Loved the cat photos...they love and protect you, and probably enjoy the heat bed thing as well. :) Hugs to you and I'm constantly thinking of you and your health girl.

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