I am going off of IV in about a week so I can move back home and go back to work (I live in TX and my LLMD's can't prescribe IV across state lines).
Before going on IV, I was on orals for 2.5 years and plateaued.
I have been on IV Invanz for about 2 months, along with alternating orals: tindamax, alinia, ketek and mepron. I have seen a lot of improvement, but I still have quite a ways to go before I'm better.
Has anyone switched from IV back to orals and continued to see improvement? I am afraid of backsliding by going off IV and I don't want to lose this progress I've made, but I don't want to lose my job either.
Once you get to a certain point on IV, can orals be strong enough to finish it off?
Any experiences you have with this would be much appreciated and will hopefully help ease my mind a bit!!
Thanks so much, V
Posted by Lymetoo (Member # 743) on :
I would think that with the right orals and some tindimax that you wouldn't backslide. The tindimax (or flagyl) is essential to kill off the cysts that have been formed.
Posted by VB (Member # 16824) on :
Thanks Lymetoo! I've been on flagyl or tindamax and will definitely stay on one of them, along with other orals. I hope you are right! I am just worried.
Has anyone else gone off IV and back to orals and continued to see progress?
Thanks again, V
Posted by momofthree (Member # 19490) on :
My daughter was taken off IV and is now only doing orals and she is still improving. Hope this helps
Posted by VB (Member # 16824) on :
Yes, that is encouraging. Thank you very much mom of 3!
Posted by Lymetoo (Member # 743) on :
I think the problem with IV used to be the Rocephin most drs were using. Lots of relapses then. Many were because drs were not using the cyst busters.
We're counting on you to sail right through!!! Posted by zil (Member # 12048) on :
My progress has been extremely slow. I was on oral antibiotics for about 14 mos then IV for 12 months. I had improvement with some of my symptoms---neck pain, tingling, vision, and not others--feeling bad, extreme fatigue, burning sensations etc. There are more but too many for me to list. After I went off antibiotics I went on Bactrim and this is the only drug I could tell an immediate, well it was 3 days, feel better on. I didn't feel horrible like I had the flu and it helped with joint pain I was having at that time. I have since started mepron, artemesia, malarone, tetracycline and it's going slow but some improvements. I think too much emphasis is put on Lyme and not the co-infections bartonella and babesia. I feel like I wasted a year and a ton of money on IV antibiotics when I should have been treating Babesia and bartonella. I'm sure the IV's did kill off more of the Lyme but I also needed the other meds. This is just my experience. We're all different. Good luck.
Posted by VB (Member # 16824) on :
Thank you all for the encouragement. I have been using cyst busters during the IV treatment, so hopefully that won't be an issue. I've also treated coinfections several times.
I just don't know why I'm progressing so slowly, but at least I have seen a good amount of progress on the IV. I just don't want to cut it too short and lose all the progress I've made.
I'll quit my job if I have to in order to stay on IV if I'm going to backslide once I'm off... just don't want to have to do that. Would like to be able to do orals and continue to progress.
Thanks again for the kind words and help! Guess I'll just have to play it by ear and hope that orals continue to do the trick.
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