Forward and Backward – Another Layer Deep

Let’s cut right to the chase. I am not 75% better, as my doctor hoped I would be by my June appointment. I have mentioned before how treating Lyme is like peeling layers of an onion. And now, in my fifth month of treatment, I am really starting to experience what that means.

We started with good ol’ doxycycline, the go-to Lyme Disease antibiotic. Plaquenil, an anti-malarial was added to address the Lyme in its cystic form. I experienced a small amount of improvement. Some persistent symptoms, in particular the stabbing headache that just wouldn’t quit, made my doctor suspect the co-infection Babesia. Co-infection tests are not every reliable, so though I tested negative for all of them, we knew I may still have some that would reveal themselves by not getting better with Lyme-targeting meds.

To address the assumed Babesia, azithromycin was added – an antibiotic that has proven to be helpful for both Lyme and Babesia. Doxy was discontinued, as Lyme spirochetes are known to adapt to antibiotics, so you need to switch things up to continue progress. With azithromycin and plaquenil on board, I continued to make progress, but not enough progress. The next addition was Ceftin, used to treat bacterial infections (Lyme is caused by the bacteria borrelia burgdorferi).

This is where I started to really see layers form. Looking back over my treatment, I could see some symptoms had nearly vanished. The knife-like headache was gone. I hadn’t noticed my lower back aching in a long time. I also noticed that my “good” days were getting better. I noticed two good days in a row…soon I noticed FOUR good days in a row! But the good stretches still ended abruptly, and when they did, a new “normal” for my bad days was emerging. These bad days were foggy days. Days I couldn’t play checkers with my son. Days I fell silent in the middle of conversations because I couldn’t think of a word. Nights that I couldn’t get to sleep for the aching in my right limbs.

With the improvement of my headaches after azithromycin, we can assume that they did come from an undetected case of Babesia, as we guessed. My remaining, lingering symptoms, bring the question of Bartonella, another very common Lyme co-infection, that, to be honest, I suspected I had from the beginning, when I first researched co-infections on my own. Bartonella, and complicated cases of Lyme, are often helped by another antibiotic, rifampin. If the rifampin helps, we can assume that I’ve been dealing with the Bartonella Layer of this Lyme Layer Cake, if you will.

After sharing my notes and observations with my doctor at my June appointment, she first uttered the phrase “neuro Lyme.” She ordered another MRI of my brain (my first was in November, and was clear), and gave me this cheerful (<–sarcasm) prescription with which to schedule it:PhotoGrid_1434992100822

Was I surprised to hear her say Neurological Lyme, and order an MRI? No. I am happy to get back into the tube. It is scary to have brain function problems, and really, if I am having neurological symptoms, that means I have Neurological Lyme – otherwise, why the heck would this be happening? (Well, MS I suppose, but that doesn’t really seem to be my case.) I do know, from my own research, that Lyme is very hard to find visible evidence of in the brain – through MRIs or other imaging technology. But it’s worth a look, when a young person with no history of brain problems suddenly forgets how to write a check, or can’t beat her 5 year old at checkers. It’s worth a double check.

We’ll see if this new drug will bring improvement. We’ll see if the MRI reveals any evidence of Lyme, and what that might mean for the course of my treatment.

We’ll see, we’ll see, we’ll see.

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5 thoughts on “Forward and Backward – Another Layer Deep

  1. We did almost the same antibiotic journey as you, and eventually plateaued but we were not 100%. My doc added essential oils, and holy moley did things start to progress again. It is amazing how much we have relied on several different treatments to peel the layers like you describe. There is no cure-all —- you need them ALL for remission.

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  2. Brit, this all sounds unbelievably scary and frustrating. I am thinking about you and wishing you all the best every day. Thank you for sharing your progress. ❤

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