Wednesday, October 28, 2009

Week 4 on Jemsek Protocol

Okay so week 4 is a repeat of week 1- that is I do IV Azithromycin and Clindamycin with Mepron and Artemesinin (1000 mg twice daily) on M,W, and F.

After being off antibiotics for one week I started to get some symptoms back- some sweats, joint pain and more fatigue. I was actually looking forward to restarting antibiotics. Not sure if it was my imagination but felt more energy first few days on Clindamycin. I am also enjoying the relaxing effects of IV Azithromycin.

I am tolerating this regimen really well. I do get nausea if I have an empty stomach- so on M,W and F morning I am careful to eat a full breakfast before infusing (this is also good as I have to doing the ghastly Mepron with fatty meal).

Days off antibiotics I do the Lactated Ringers which takes about 3 1/2 hours to go in. I have started waking up early to start the infusion and going back to sleep so that it is in by 9 to 10 am. On the days that I do this I also do infrared sauna.

I haven't changed doses of Lyrica (100 mg at bedtime) or Lamictal (75 mg at bedtime)

Hard to know what is working but I continue to do very well i.e. stable moods, sense of humour is back, less sweats, and able to do more "normal" things and tolerate socializing better. I still mainly like to be alone and need a LOT of rest. Not able to think clearly like the doc I was - but one day I can see that will return.

1 comment:

  1. Dear Phuli, thank you so much for taking the time and effort in making this blog to share your experiences in fighting lyme. I am pulling for you. I am slightly illiterate/inept at some moments and am simply curious (here on this page, as opposed to navigating and getting lost) how you are doing these days - October 2012 - in your progress in overcoming the disease?

    I know there are the separate issues of beating back the infection - trying against odds to eradicate it - and then the similar but different issue of trying to heal your body from the massive damage - remyelinating all your nerves, building back mobility and strength, reclaiming your immune system, your digestive system, your energy, your cognitive function, (getting rid of those brain lesions and areas of inflammation, etc!) and re-assimilating into your life and activities.

    I am currently hopeful of finding a cure, but I am pretty badly sick. In my sixth year of a very devastating infection. A few years ago, it was so bad that I could not read or type or hold a cell phone. Last winter I was bedridden. This summer, I started having really (already had twitches and tremors but for the most part they were localized within muscle fibers/bundles and not outwardly jerking as much as I sometimes do now. Even as I am writing this I have my ribcage resting on the table, am typing slowly and making dozens of typos that I would have never made before. No chance of me sitting up straight. Sometimes I just dont have the energy and strength.