When I finally had a doctor confirm to me that I would never really get rid of Lyme Disease, I'd only put it in remission... I didn't even cry. I just said, "ok, cool." I'd been trying so hard to stay strong that all my emotions were trapped inside me. I hadn't been letting myself feel and cry and recover. So, in April I broke and it was like the violent breaking of a storm. It was a monstrous storm, it broke dams that flooded my heart with all the dark emotions I had been trying to suppress.
And it was so healthy. Even if it took a long time for the flood waters to fully recede.
I hadn't intended to keep all my emotions in for that long. I was just trying to keep moving forward. What's next? Find a doctor. What's next? Take this. What's next? Document progress. I didn't give myself time to feel.
It wasn't pleasant that I broke in April, but it was necessary. I needed to grieve for myself that I'm in pain and suffering. I needed to grieve for myself that this is chronic. I needed to cry and feel sorry for myself so that I could keep fighting. I needed to find a reason to keep suffering and somehow hoping.
And after four days of abject misery, I finally found the will to fight again. And the funny thing is that it came with a few ways to beat back the darkness. I found once again that writing was key to finding my way out of the pitch black.
"Writing?" you say, "you didn't write anything on here in that time." Yes, it's all true. I did something far madder. I joined an Instagram challenge called May Musings with a tiny press called BookLeaf Publishing and wrote a poem every day for the month of May. This is being collected into a book that will be published very soon.
I wrote about chronic illness and hope. I mused on sorrow and pain, hardship and strength. And I slowly picked myself back up from the floor of grief and carried on.
So, what have I been up and where am I now in my Lyme journey?
I stopped taking plaquenil and azithromycin because they were very hard on me and they weren't helping fast enough with Babesia to be worth the hardship. They may have helped put my temperature regulation onto a better path. But it's hard to tell. I'm not as cold, but then it's summer and it's 100 degrees out.
I continued with mepron until I was out and then started on doxycycline again. I am having a few stomach troubles with it, but other than that, I feel much better than on plaquenil and azithro. I'm still doing the injectible bicillin, which I think is helping with my neuro Lyme symptoms. I'm also still doing a weekly ozone IV.
I'm currently giving LDN (or low dose naltrexone) a try to see if it can help with insomnia, immune boost, pain, or mood regulation. Theoretically, it can help with all of those. I would be happy if it helped with even one.
I want to say I'm seeing improvements, but it's so hard to tell. I do feel like my brain fog is getting better. I have had a few instances in the last few weeks where I remembered things I needed to do without a list, like the old me would have. I do feel less cold, but again, it could just be a summer thing. I feel like I have a bit more energy, but still no stamina.
I'm ten months into my journey with my current doctor. (Doctor number 3). I feel like the progress is coming but it's so very slow. The next thing we are planning to do is to put me on Rifampin to tackle Bartonella. I can't tell you why, but I firmly believe that Bartonella is the cause of my body pain. I'm excited to start tackling that in a few days.
And bonus, Rifampin may cause my body fluids, including tears, to be red. I can't wait to have red tears for Halloween. It's the little things really.
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