Just checking in......

Hey - I am just finishing up 6 weeks of IV rocephin. It has been interesting.

First the bad, the fatigue has been incredible. I h.ad to take two weeks off from work I was so exhausted. Still only at about 30% of energy level. my LLMD says that is a big herx.

The good news? MY BRAIN IS BACK! I feel like me again - I know that sounds stupid, but its true. No more "two drink" brain fog. I feel like my old self mentally, which is a wonderful feeling. I've been reading like a fiend again.

Back to working 30 hours a week -sometimes it gets hard, but enjoying being out and about.

My LLMD says he wants me on IV until I have two months of no symptoms, then we will transition to orals. A lady who sees my doctor just got her PICC line pulled last week - she was sick for 5 years (misdiagnosed like most of us) and is now symptom free and feeling great. There is hope.

jginkc, I am so glad to hear you are improving!  I am also glad your doctor will continue treatment until you have been symptom free for a couple of months.

Yes, there is hope!

 

Hey georgiagirl- So glad to hear the Rocephin is making a difference. I am now waiting for my appt. to have another line put in. I saw the doctor last Friday and he said I am looking at a year on IV so they are going to do the chest port. I was on for 6 months and have totally relapsed. I have been on orals but they are doing nothing at all.

My question is if you are on anything else besides the Rocephin. My doctor is talking about pulsing Rocephin and Zithro since I did relapse. When I was on Rocephin before I was also taking Malarone, Rifampin and Plaquenil. The doctor told me at the appt. that once the Rocephin starts hitting the bugs they turn into cyst form so I need to have Zithro to break that up. Maybe when I was on it before they were all hiding out and that is why I felt so good. It is all so confusing. I just want to make sure I do it correctly this time.

I hope you keep feeling better and better!!

Kim

She had to do a year of IV's - she was in really bad shape when she started, and like almost everyone, reported the terrible fatigue when she started rocephin.

I'm really tired today, but most of that is due that my 4 year old woke up at 3 a.m. with a nightmare and then I couldn't fall back asleep.

My mood is so much better lately - it is nice to feel like yourself.