Tuesday, March 2, 2010

New medications and the battle for a good night's sleep

I saw Dr. R (my Lyme doctor) today. And since I haven't posted here for a while, I've got a fair amount to report. I'll start with the good news.

The good news: I'm doing better. I know that every time I say this, I end up crashing. But for right now, today, I'm at about 35% energy-wise, 45% neuro-cognitive ability. This is the best I've been since getting sick in November 2007. So it appears that the Rocephin has been doing its job. And my labs are still beautiful, so my body is handling the medication load just fine.

So because I'm doing well, it's time to push a little harder. Of course. So I'm going to be doing 2 grams Rocephin twice daily, four days on and three days off. I'm stopping the Plaquenil today.

In two weeks, after I've adjusted to the Rocephin change, I'm stopping the Diflucan and grapefruit seed extract and going back on Flagyl (500 mg, twice daily, five days on and two days off). The doxy is staying the same (400 mg/day). I'm also going to stay on Cipro (for bartonella) for another 1.5 months. And I'm quitting the monolaurin (taken for EBV and HHV-6).

And the most exciting thing of all? I am trying out private yoga classes. Regular classes are too fast-paced, but the restorative classes are too slow/easy. So I'm working one-on-one to establish poses that I can do (particulary with my PICC line in place) and remind my body what the proper alignment is said poses. I went to my first lesson yesterday, and it was a really good experience.

And now the bad news. Holy morphine, Batman, I hurt like a son of a biscuit. The joint pain has receded and for the moment is only bothering me occasionally. The deep bone pain is annoying but that's about it. The back/neck pain, however, is like to drive me mad. I'm currently taking 20 mg Kadian (extended release morphine) at night, along with 1200 mg gabapentin, and it's barely touching the pain.

So I'm going to go up to 1800 mg gabapentin and see if that helps. If not, I'm going to have to talk to my pain management doctor to see to do next.

The pain is, naturally, interfering with sleep in a major way. At the same time, the trazodone hasn't been helping. I'm making an appointment to talk about what, if anything, I can/should do about it. I've also started acupuncture, and I'm hoping it will help.

Finally, a new symptom has popped up. I've felt very short of breath on and off for a while. Sometimes during activity, sometimes when I'm lying in bed. There appears to be no pattern. So just to be on the safe side, I'm going to have a chest CT tomorrow morning to rule out a possible pulmonary embolism. With the PICC line, there's the chance of small blood clots forming at the tip of the line and breaking off and entering the lungs. This, as you might guess, is not good. Thus, the CT.

There are many possible causes for shortness of breath, including thyroid and adrenal issues (and babesia and the bizarre mess that is Lyme itself). So there are many less severe possibilities than pulmonary embolism. Still, better safe than sorry and all that.


  1. Hey, I am glad you are feeling better! YAY!!

    Why are you quitting the monolaurin? I just bought lauricidin & am slowly easing into it.

    I can't help but feel so bad for you and your pain. You've been going through this for so long! I love your attitude. I need to have a better one. I catch myself feeling sorry for myself too often.

  2. Hi! I just found your blog. I had Lyme Disease and Babysia for I think 2 years before my doctors caught it.
    I was battling rapid heart beats, chronic fatigue, and pain - a lot of pain all the time. Once my official meds were done I remember calling my doctor and begging for pain pills.

    I went vegan and eventually gluten free and I noticed that helped a lot with the pain and fatigue problems. I also don't have the rapid heart rates anymore when i try to sleep. I don't know if you eat wheat or not, but it helped me and I thought I might suggest it to you.

    Thank you for the great blog, I found it cause I use your ice cream recipes at the bakery I work at. We started making gluten free ice cream sandwiches!

  3. My friend showed me your profile on here and it seems you and I are in the same boat exactly. I haven't looked to see where you're from but I travel from Ohio to ny to see a Lyme specialist. I have been on Iv rocephin for eight months. I was actually just on our local news focusing on Lyme disease and how hard it is to diagnose. I am also on a LOT of gabapentin and other things also two other antibiotics. If you ever want to chat you can look me up on Facebook, Paige mcginley. It's nice to talk to someone who experiences the same. I just went off Zithromax and am in some major pain these past couple days can barely move. Hope you get to remission!