I am now working with Dr Joe Jemsek, the infectious disease doctor highlighted in the documentary Under Our Skin. I think he is brilliant and can offer help to those of us with chronic Lyme.
If you read the posts below you will see that he uses pulsed treatments, M,W, and F with drug holidays for 1-2 weeks. I have just started my first week of intravenous and oral treatments and plan to blog about my progress.
Dr J likes all patients to write about their week, every week, to track progress in symptoms. You have to do this in 50 words or less.
My first week was really good- in fact, I can truthfully say that this was my best week since starting treatment 18 months ago.
I started with Lyrica 25 mg for pain and sleep and Lamictal, to help control emotional lability. I am not a drug taker by nature but on the Lyrica/Lamictal combo I slept very well and woke feeling better than usual. On these meds, I still had shoulder pain and joint pain- but it didn't seem to matter as I slept.
After 2 days, I started IV Clindamycin. During the first dose I hadn't eaten much and proceeded to feel very nauseated and had a horrible bitter taste in my mouth. The intravenous Azithromycin that followed made me very sleepy. Despite this after a couple of hours I was up and was well enough to enjoy a family dinner.
Next morning I was careful to eat a full breakfast before any IV's and I had NO nausea with infusions. Still some sedation but slept an hour and was able to get up and function around the house. I even cooked dinner! Best part is NO antibiotics on the next day.
In general on the pulsed therapies I am the very best I have been since beginning treatment 14 months ago.