Lyme Log: Starting the 'Unmentionables'

When this post arrives in your inbox Monday morning, I'll be heading out shortly thereafter to start back on treatment for Lyme. Yes, it's time to start talking about the unmentionables again. I know you've missed all of that talk!

Things have been in the works preparing for the next step in treatment since my phone consult with Dr. Lyme on August 20th, so this has been a long process. I finally met with my PCP on Friday and she is 'on board' and ready to go.

One note about Dr. PCP. I'm extremely fortunate to have a PCP willing to go this road with me. Rarely will PCPs (or any doctors who don't focus on treating Lyme treat patients like me who require unconventional and highly politicized treatments). I have a really great medical team coming together to treat me and give me their best efforts to help me towards better physical well-being.

My plan was to make sure everything was in place medically-speaking and then post the details of the plan. However, as we know the best laid plans of mice and men often go awry. And instead of having the weekend to get a few things in place before treatment starts again, I had another miserable GI attack. (We still have no known cause for these and the frequency of the attacks this summer has been unsettling and discouraging.)

I'm not yet recuperated enough from my GI attack to get back to blogging fully, so I wanted to at least post a quick update to all my loved ones letting you know where I am. I have absolutely no idea what to expect from this next step in treatment, how sick the new antibiotic will make me feel, whether I'll be up to blogging or emailing, etc. I thought it best to post a short update at least!

In short, we have decided to head towards IV antibiotics in the form of Rocephin. I spent a great deal of time discussing this option with Dr. Lyme, Dr. ANS and Dr. PCP. Our family also spent a lot of time talking over the risks and benefits of moving in this direction. It was not an easy decision to make. For those of you who have seen Under Our Skin, you likely have some sense of what I'm facing. The movie actually helped to clarify this next step for me.

I feel that I'm not willing to say that where I'm at right now is 'good enough' if there is a shot (within reason) at regaining significant quality of life. Hopefully I will be able to discuss this further in a future post.

To begin this journey, I will be getting IM (intramuscular) injections of Rocephin every day this week to make sure that I am not allergic to it, and that I can tolerate it.

On Monday, Tuesday and Wednesday of this week I will get the Rocephin in doses that are titrated up each day (125 mg on Monday, 250 mg on Tuesday, and 500 mg on Wednesday). All of these doses will be done under surveillance to watch for allergic reaction.

As long as I am not allergic to the Rocephin we will continue with Step Two, which is to receive doses of 500 mg every weekday. The typical daily dose in patients with chronic Lyme is 2 grams daily, so we are taking things slowly. Injections of Rocephin are done using lidocaine to ease the pain, but they are reportedly very painful. According to Dr. Lyme, most people cannot tolerate them for more than 7-10 days, but since I am taking less than a full dose I'm hoping to stretch that out a little longer. So that may determine how long I am able to continue having repeated sticks in the toosh before going to a port!

It's been a strange beginning to the new year. And feels strange to embark on this new treatment on Yom Kippur--the day God does or does not seal us into the Book of Life for the year. I hope that I have listened well to God as I have pursued this path.

While I am nervous and anxious about what is to come, I am also ready to start treatment again. (No, I'm not ready for the misery of herxing....but I have begun to go backwards, and the longer we wait to start treatment the higher the infection burden we have to deal with).

So, as Dr. ANS says: "Onward and Upward." Or so I hope.

I'll keep in touch via blogging, facebooking, and emailing as best I can during this journey. Thank you for your loyalty through this all.

Blessings,

Emily

Photo: Impatiens are still blooming in the yard!