Friday, July 24, 2015

A Little Lyme Update

I can't believe I haven't talked about Lyme since March, so I figured it was time for an update.

And because I'm a brat and stopped responding when people ask me how I'm feeling, I know people are wondering. It's just sometimes I don't want to think about let alone talk about how I'm feeling; so please don't get offended if you send me a message and I don't respond. I promise I saw it, and felt loved that you thought of me enough to ask, but you happened to catch me on a day I didn't feel like talking about it.

I've been in treatment for over 7 months now. When I first started this back in December I never thought I would be where I'm at right now.
Since February - the last time I actually updated a lot has changed. I have worked my way up to 4 antibiotics. For spoonie reference, I started with Doxycycline, and Biaxin. Doxy was fine, I was on it back in Cambodia, but the Biaxin made me so sick I couldn't function, so she switched it to Azithromycin, which I reacted to much better. No more constant nausea and sour stomach! I also discovered the best method to avoid nausea - I take the pills in the middle of a full meal. If I take them too early, too late, or don't eat enough I will get an instant stomach ache. But I finally found a sweet spot.
But of course you can't stay with the same anibiotics forever, so she switched me off doxy and onto Ceftin in April. This was perfect because doxy made me photosensitive and I would burn through sunscreen in less than an hour and come away with painful tingling skin. She also added another antibiotic called Tinidazole.
Tinidazole became the death of me. I take it 2 weeks on 2 weeks off. When I first started taking it, I slowly had to increase the dosage every few days. It made me herx SO badly. Basically herxing is when you're body is too filled with toxins. I felt like I had the flu constantly. But I knew that meant it was breaking up the bacteria, so that was a comforting thought.

I finally increased it up to 1 1/2 pills a day, and tried to do 2, but it just made me so sick I went back to 1 1/2 and was there for a while. It was kind of my sweet spot. Those 3 antibiotics and my bajillion supplements. Finally in April, for the first time in months and months on my 2 weeks off tinidazole, I didn't feel limited by my disease. I could go about my day, and do fun things on the weekend and not run out of energy.
Things can't stay the same though, and she added in a 4th antibiotic called Malarone. I reacted pretty well to the malarone. I had a tough time for a few days increasing the dosage from 1 to 2 a day; but after my body became used to it, I started feeling fine again.

I was so nervous for our trip home, and all the hiking we had planned, but it fell on my 2 weeks off tinidazole, and everything worked out perfectly. I had lots of energy and life was pretty good.

Until Tinidazole had to be increased to 2 a day again in June and then life became not so good. My 2 weeks off of it weren't the respite they used to be. For a solid month I have been back to having low energy and kind of the constant of feeling like I'm running a low grade fever.
We hiked Old Rag on the 4th, while I was off Tinidazole and my arthritis flared up so badly I could barely walk for 2 days. It was the first time I'd had arthritis since I started my treatment in Dec, and it was so discouraging to have it come back.

I had another Dr. appt this week and I think my Dr was more discouraged than I am, that I wasn't feeling as well as she would have hoped. And just as I feel like I've plateaued after coming back down hill, she's switching up my medicine again, and taking away and adding an antibiotic as well as another supplement, which will put me at 13 supplements, and a total of 32 pills a day. Malarone will go away, Tinidazole will be coming permanent and another antibiotic will be added.

I'm a little nervous at how I will react to the new changes, but excited as well. It feels like I've plateaued in not a great place, so I'm hoping things will go up from here.

2 comments:

Torrie said...

I'm sorry you have to go through this---that totally stinks. Hope your doc and you can find some consistent treatments to kick this Lyme in the butt. Sending thoughts and prayers your way---

Krysten Quiles said...

Ugh I have a coworker with Lyme and I've heard all the horror stories. I feel awful for you! Hopefully you can keep working towards feeling better!

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