So I've officially been on treatment for 16 months now and it's been quite the roller-coaster of highs and lows. I'll do my best to keep this brief, but I just wanted to update you all and ask a couple of questions.
So in March of 2015 I began a treatment protocol that gradually built to:
Plaquenil 1 daily
Artesunate 2 Mondays & Thursdays
Azithromycin 1 daily
Minocycline 1 tablet in am, 2 pm
Pyrimethamine 25mg twice a day
Sulfadiazine 250mg caps twice a day
I generally tolerated everything quite well (apart from a slight increase in symptoms initially) and kept up with my detoxing, clean diet, supplements etc as best as I could. By August of last year I was feeling AMAZING - I climbed a freakin' mountain. Literally. I danced at the top out of pure joy and almost cried with happiness. It was incredible to feel like a "normal person" again after 6 long years of suffering. The joint pain had been eliminated almost entirely, as had the sore throats/swollen glands. I rarely had headaches, I slept through the night, and the ‘brain fog’ had lifted. I had the energy to enjoy life again and it was THE BEST THING EVER.
However...this sadly wasn't to last. By late September of 2015 (whilst still on the same medication regime), I began to feel some joint pain creeping back in. Then a few more headaches. And sadly I was no longer waking feeling energised and ready to take on the day. I hadn't had a nap since April and suddenly my bed and the couch seemed to be calling me for daytime naps again. It was so crushing after the experiences I'd had mid-year, having seen the light at the end of the tunnel and having it gradually fade away again.
When I saw my doctor, he agreed it was time to change things up. Based on my symptoms at the time, he believed Babesia had been eradicated and Bartonella was about
80% gone. I was excited to start my new medications, and hoped they would have a similar (and lasting!) effect to the first course of treatment.
So I then stopped the Pyrimethamine, Sulfadiazine and Azithromycin and added in:
Penicillin (Cilicaine VK 500mg) 2 capsules every 8 hours (so 3 times a day - morning, late afternoon and before bed)
Probenecid 500mg twice a day
Then a month later began pulsing Tinidazole for 5 days every 3 weeks. I was beginning to feel a little better prior to the Tinidazole, but every time I started the 5 days I began having vivid nightmares and night sweats again. When I mentioned this to my doctor in February, he admitted that my symptoms sounded very much like Babesia rearing its head again, so I stopped the Tinidazole and began taking:
Nitazoxanide 500mg twice a day
The Nitazoxanide was pretty awful for me. I took it for the two months prescribed, but just felt lousy the whole time basically - sore joints, headaches, fatigue etc. The night sweats and vivid dreams stopped though...I still don't know if that was a herx or just more of the same symptoms building up again since September the previous year...
So, about
2 or 3 months ago I started taking Flagyl (Metronidazole) in place of Tinidazole. And that brings us up to the current day (at last! Sorry that was so long!). I pulse Flagyl for 1 week in every 4 and oh my goodness, this HAS to be a herx (I think?!). The night sweats have been so horrible!! Especially for it being the middle of winter in Australia! I sometimes wake up 3-4 times a night, absolutely soaked in sweat. I then throw the covers off, but it's only 5 degrees (celsius), so immediately start shivering and need to get back under the blankets...It's not just when I'm taking the Flagyl either, it can be the 'on' days or the 'off' days.
Anyone else had any experience with Flagyl or with night sweats as a herx? Because I also had this reaction on Tinidazole, I strongly suspect it may be a herx...but I would welcome your input/opinions on this! I'm seeing my doctor next week, so I'll be interested to hear his thoughts about
it. I'm so over changing my PJs, sheets and pillow slips. I'm also really tired and sore
Thanks for reading all that! And thanks in advance for your replies! I'm eternally grateful for this community.