I don’t know what else to call it at this point. All anyone and everyone is telling us is that we’ve got to wait until Mayo. After that, who knows. I’m not guessing.


My LLMD changed her mind this morning while talking to my mom. After thinking about it, she wants me off not only the Levaquin, but also the Azithromyacin and the Samento {Cat’s Claw}. So, no more antibiotics for me until we figure out what’s going on. She’s worried that what we’re doing might be causing my intracranial pressure to continue rising. She firmly believes that the die-off and the infection are the cause, but of course she’s waiting to hear back from Mayo too. Better safe than sorry. There isn’t a lot of case studies about rising pressure and Lyme Disease. There just isn’t. She’s scared however that Mayo won’t consider that my problem is an infection. Personally, I think that it’s not just a coincidence that I’m having this problem now after I started treatment. I don’t see how either the Lyme itself, or the treatment, isn’t contributing to the issue.


So my doctor’s plan is to take me off all my medications that could be contributing to the rising pressure. If My pressure is still high at Mayo next week, then we know the meds aren’t the cause. If it isn’t, then we move on from there trying to find a treatment plan that will still heal the infection but won’t have the dangerous side-affects I’m dealing with now. A waiting game, right?


I’m nervous about how my body will react after being taken off the antibiotics. Many people herx pretty badly afterwards. But I’m not sure what to expect. I wish the timing was better. I’m enrolled in summer courses right now, and really need to be able to work on them. I only have until the 26th to finish them. And shhhh but I haven’t started yet. The LP got in the way of that.


And I’m still recovering! Today is much better than yesterday so far. My back is less sore, and so is my nerve pain. Now all I need is to NOT get the spinal headache and I’ll be all good!


Peace and healing, molly

“How much of human life is lost in waiting?”  – Ralph Waldo Emerson