Sinking

Things have been bad.

2 weeks after the adverse reaction to Omnicef, I'm still having diarrhea every day. It's better than it was at the beginning -- I was able to go off Lotronex again after about a week -- but I'm still having a very hard time figuring out what is safe to eat. Basically, nothing is. My whole gut is exquisitely tender, and I have been reacting even to foods that are normally safe for me.

I've also been having more trouble sleeping since Dr. L increased my Malarone dose last month. I'm not sure if it's a die-off reaction, or a change in my rate of liver metabolism, or both, but my reliable sleeping pill (Ambien CR) has suddenly become less effective. I have had the same experience with other medications, and the Ambien started working perfectly again when I finished the other meds, so I suspect the Malarone. The issue this time, though, is that I won't be going off the Malarone for some time. In fact, Dr. L has given me a small dose of Mepron to supplement it with, so if anything I expect the sleep problems to get worse. She also doubled my artemisinin and added oregano oil to my regimen since the thrush infection isn't responding well to the Nystatin.

I'm not due to start the Mepron for another 10 days, but with the artemisinin and oregano oil my sleep has already gotten worse again. I was getting 6 1/2 - 7 hours a night before the changes, and last night I got 4. Adjusting my Ambien dose does help; I have been cutting my pills in half so I can take a piece each time I wake up, and two nights ago I took an extra half a pill when I woke for the third time. It's just worrying to need that much medication to sleep. I can't do this on a regular basis without running short of medication, so I called Dr. K to ask about increasing my Ambien dose.

from 4/7: I hit an all-time mobility low today. Around noon, I went outside to put a letter in the mailbox and saw one of my favorite neighbors down at the other end of the block. I walked down there to say hello. I chatted for less than 5 minutes, then walked back. By the time I got home, I was breathless, and by 2:00 this afternoon, I could no longer keep sitting up in my desk chair and had to lie down. I just keep feeling more and more exhausted, and I can’t go to sleep. (Note: I'm having air hunger and chest pain more frequently and with less exertion.)

On 4/10, I typed up Michelle's notes from the 4/5 appointment with Dr. L. The right side of my face suddenly went numb, and I had bad paresthesias in my neck and back at the same time.

On 4/11, I doubled my artemisinin dose after checking with Dr. L. She also instructed me to take it between meals. (Before, she had had me taking it with the Malarone.)

On 4/12, my eyes were going in and out of focus all day; feeling really ill, with severe nausea, gut pain, and heartburn all day. I had an adverse reaction to my morning nut muffin (home-made, no change in recipe or ingredients).

On 4/13, my helper took me to buy some oil of oregano liquid. The one I decided to try is Now Foods Oil of Oregano Blend. I chose it because it didn't appear to contain any alcohol and was recommended by several of my friends with experience in herbal medicine. I chose liquid over capsules because I could titrate it more slowly and because I could hold it in my mouth before swallowing (Nystatin tablets don't treat oral thrush). Note: not miscible in water; taking in oil is better. Took second dose in 1 tsp of cod liver oil.

On 4/14, I started BHRT. Bi-est 1 mg, days 1-12, and Progesterone 100 mg, days 12-24.

My cognitive problems have also gotten worse. I'm having trouble with word finding, skipping chunks of text when I read without realizing it, typing letters that aren't the ones I intend.

I'm not sure what to do. I don't think I have ever felt so sick. At the same time, all the Lyme symptoms are returning. Very discouraging, since I know I absolutely couldn't tolerate an additional antibiotic right now.