I was just wondering for those of you who are recovered or 90%+ better and were on an IV med, how long did it take?
I have been on Rocephin, 2g per day for over 6 weeks now, and have had very little improvement so far. It got rid of my headaches and nausea (which I'm thankful for 2 bad symptoms to be gone), but really no other noticeable improvements.
It caused very bad joint pain in my knee when I fist started it (never had the joint pain before I started the Rocephin) to the point where I couldn't even sit down to use the restroom. It went away for the most part within 2 weeks, but is that a good sign that the meds are doing "something" even though I've had few improvements yet?
My nerve pain is now back again after slowly retreating for about a month there. Fatigue is still bad, depression worse than ever (crying spells for several hours at a time, after not having them for a while), anxiety and insomnia still flares every now and again, but after having TOTAL insomnia for a year before Zithro, I'm not complaining about the 7 restless hours I can obtain most nights. Spacey/disequilibrium feeling and still unable to drive. I spent almost 5 months on Zithro and Mino, and a month on Rifampin (for Bart, I have one of the most horrible bart rashes I have ever seen), before starting the IV drugs.
Anyways, I think a lot of my depression is because I am becoming worried after 6 weeks of an IV that it is not going to work. I was just curious to see figures on how long it actually took people to get back to life in some way, whether its work, school, or just not sitting around the house all day.
I am a very type A person and after 18 months of symptoms I am going nuts being at home (my family is driving me even more nuts and I need to be well enough to move out)! I am 24 and a grad student and just need to get on with life! Even if it was only 4 hours of work a day one or two classes, and being well enough to go out with friends and date again, then I would take it for now (or at least one of those at the very minimum for starters). OK, or just being able to drive and run my own errands would be a good start...I'll take it!
Oh yeah, I just started FLAGYL too, taking one 500mg pill pulsed 2 days a week. I think this has flared a lot of the neuro and psych symptoms. The doctor wants me to work up to four pills twice a week (2000mg)!!! Was anyone actually able to slowly work their way up and tolerate this much? Is it really worth sticking it out on this one? From what I hear it is really effective if you don't off yourself while taking it!
Thank you friends, Ky
Posted by timaca (Member # 6911) on :
It took about 16-18 weeks before I felt significant improvements with IV rocephin. (I had a herx about 2 weeks into starting it.)
I was on IVs for 6 1/2 months, got a fungal infection in the picc line and so it was pulled. 3 weeks later all my symptoms which had gone away returned.
I came to discover later that I'm battling both chronic viral and chronic bacterial pathogens so I'm on antibiotics (about ready to go off those now) and antivirals.
Good luck.
Best, Timaca
Posted by gmb (Member # 23562) on :
Kj,
I've been on IV Rocephin 2g/day for nine weeks. Also on oral zith, and on the 4th week of Rifampin. Been on ABX treatment now for almost 2 years.
No significant improvements from the IV either. and today I start 2g IV Rocephin twice a day, four days on and three off. This should shake things up a bit more. Neuro is also my worse symtoms right now.
I expect I have at least another year of treatment ahead of me.
So Kj, be patient if you can.. this take time
gmb
[ 02-21-2012, 11:15 AM: Message edited by: gmb ]
Posted by sbh93 (Member # 30429) on :
I've had significant improvement with iv, but on high doses with high cyst buster doses daily, not pulsed. I still have many symptoms, but I finally believe I'm getting somewhere.