Lyme Log: Pressing Ahead...

After a phone consult today with Dr. Lyme, we have decided to add in yet another medication to my current 'cocktail.'

On Tuesday I will not only get my bicillin injection, but also start taking a teeny-tiny dose of the antibiotic Zithromax (1/2 of a 250 mg tablet once a week).

This brings my Lyme cocktail to four medications: Bicillin, Zithromax, Plaquenil and Malarone!

We decided that since I already feel miserable on the days after my shot, I might as well just keep the misery contained to as few days as possible and take the Zithromax on the same day that I receive the bicillin shot.

Hopefully this will mean that I will still get my two to three 'good days' each week between shots.

The risk is that it will be too much for my body to handle at one time, so we will see!

As always, before I begin any new treatment, I am a bit anxious.

Why did we decide to add in the Zithromax right now?

Hopefully it will work synergistically with the bicillin.

Also, different antibiotics target different parts of the body better than others.

Since the Lyme bacteria is disseminated throughout all areas of my body we need to be targeting as many areas as possible. My fear is that if we do not stay 'on top' of the Lyme in different areas, it will just be building up in the areas we are neglecting while we're busy focusing on another area.

The bicillin targets muscles, connective tissues, and organs (such as the heart, spleen, liver), but it does not target the Central Nervous System (CNS) (just to confuse you more this is different than the Autonomic Nervous System (ANS)). Symptoms of Lyme Disease that has been disseminated to the CNS include cognitive problems/brain fog, headaches, difficulties sleeping, and mood problems.

I suffer from extreme cognitive problems (still cannot focus to read a book) and sleep problems (what WOULD it feel like to fall asleep on my own just because, well, I needed sleep and felt tired?! What would it be like to sleep through the night and feel rested?). I do struggle with anxiety and sometimes depression, but it's hard to know how much could be CAUSED by the Lyme vs. just part of who I am and part of being a person living with chronic illness. (There is a high rate of co-morbidity between chronic illness and depression--which makes intuitive sense!)

So, adding in the Zithromax, which DOES target CNS symptoms seems like a logical next step.

I had hoped to add it in sooner and had hoped to add it in at a point when the bicillin injections were not still so difficult, but we are going to press ahead despite the fact that the bicillin injections have not become any easier. I'm still knocked out for days after the shot!

I haven't written a Lyme Log for a long time...I am about to get my 15Th bicillin shot tomorrow!

I feel like I'm moving soooo slowly with the treatment and require such baby doses (which I am and I do) and this can make me feel like I'm in some way 'failing' because I can't tolerate higher doses and because I am not getting better faster. Today, Dr. Lyme said to me: "You're a prime mover in trying to press ahead." I almost cried. They were just the words I needed to hear the day before I head into another gruelling few days post-bicillin shot.

As always, thanks for your good thoughts as I start another new medication that could make me sicker (okay, likely WILL make me sicker, because, well, that's the breaks of this game unfortunately).

Blessings,

Emily


Photo: Irises getting ready to bloom at the end of May.