Last time I checked in I was getting ready to have a phone consult with Dr. Lyme. We decided to stop the malarone. I had a very, very good consult with him.
After that, I decided just to give my body a little time to see if I could come back to some sort of baseline and my mind a little break from trying to decide what to do for the next step in treatment.
I haven't had a Malarone since March 1st. I knew it was making me sick. Very sick. And very emotional. But I didn't realize quite how bad it was until I stopped. Or until I started seeing all of the symptoms I was having on it decrease in intensity.
The multitude of symptoms I was having on the malarone included: feeling feverish and flushed, muscle aches, more bad dreams, increased weakness and fatigue, feeling like I was moving through sludge, and increased 'need' to crack my neck and back, significantly increased neuropathic neck pain, increased difficulty sleeping, stomach issues, myoclonus-type symptoms, increased anxiety and depression, and an overall increase in all of my ANS symptoms (dizziness, agitation, tachycardia and forceful heartbeats).
The neck pain, lack of sleep and increased anxiety had become so intolerable that I knew I no longer had much perspective and they certainly weren't helping my body to heal.
The bad dreams, muscle aches, cracking, flushing, pain, sleep, stomach issues, depression, anxiety, ANS symptoms, fatigue and weakness have all improved since stopping the malarone. Phew.
I spent many nights awake sick, and often asked Mom to spend hours just holding me. Thank God for a mother's comforting touch. It's like magic!
Today, I'm coming off of a night sleeping over 8 hours straight. For me, this is a miracle! I am back to having treatment be 'tolerable', thankfully. I am definitely seeing things a lot more clearly now.
Because up to this point we still have no clear evidence that I do in fact have Babesia, Dr. Lyme thought it best to stop the malarone and try later for a positive test result.
We still do not know if I was reacting to the drug itself or herxing from it. What I do know is that it did reach the intolerable point! It was one big vicious cycle. No sleep means more anxiety. More anxiety means less sleep. More pain means less sleep. Less sleep means more pain. All of these mean more ANS symptoms. More ANS symptoms mean more pain and less sleep and more anxiety. And on and on. I was so exhausted I would have to say to myself: You can get up. You can move. I felt like I was moving through wet cement and my body felt like sludge.
The most difficult part about making treatment decisions is the uniqueness and difficulty of my case. We're all just muddling along, and no one knows what drugs might be the 'right' ones. So we make our best guesses. We have lots of options left to try if I do have babesia, and lots of other things to try to target the Lyme.
For now, I'm focusing on two medications: continuing the Rocephin and adding in Zithromax. Just this morning, I decided to try adding in the Zithromax. I have taken it before. It makes me herx pretty badly, so I don't know what to expect. I'm starting out with 1/2 of a tablet per week (maybe I'll get up the courage to take it Monday?).
Spring has been showing its face and getting some fresh air for the first time in many, many weeks has been fantastic! I'm sure there is more cold weather in store for us and probably even more snow, but that's okay with me.
On Tuesday, we took The Rolls for a spin by the golf course. The challenge is finding anywhere to go that isn't snow covered. Most paths are not clear yet, which is frustrating. On the previous Saturday we had also tried to go out and found ourselves wheeling around an office park area just because it was quiet and the lots were clear.
The golf course was much more scenic! Just to be able to sit up long enough for a very short ride is a big, big change.
If I can get out for a little outing here and there, feel well enough to watch a little TV, or knit a bit, I start to feel that treatment is tolerable. On malarone I was too sick to even watch TV. It felt so good to watch a movie the other day.
I don't know how the next step in treatment is going to go, but I am very glad not to be taking the malarone anymore! Mommy Bev left a message on my phone suggesting I just give my body a little time to rest from treatment changes, which was just the 'permission' and advice I needed to stop pushing so hard.
The malarone experience really wore me down emotionally and physically.
I'm still recuperating. I've needed so much alone time and quiet time just to come back into balance. I'm sorry that your emails and messages of love have gone unresponded to.
Thank you for your patience during the ups and downs of treatment. You continue to lift me up over and over and over again with your messages, texts, calls, snail mail, and fun gifts of all sorts.
Photos: An outing to the golf course.