My doctor has prescribed IV rocephin with plaquenil and Zithro for three months only. Have had lyme for 10 years with brain fog. Then he will have me on doxy, omniceff and I think plaquenil for a year at least, then I don't know what.
My question is I hear 3 months of IV is not enough so what do I do? Just take the three months anyways then go on orals? I am just starting my second month on IV, plaquenil, and zithro. Will I just get worse for only three months or will it help some?
Lyme4
Posted by Nessa1815 (Member # 15697) on :
I am only getting 6 weeks of Rocephin per my insurance. I could only wish for 3 months!
Posted by Lymetoo (Member # 743) on :
Let's hope it helps!! Take what you can get and hope for the best!
Posted by tdtid (Member # 10276) on :
I'm on IV rocpehin but it's all totally been out of pocket, so not sure how long I'll be doing it no matter which direction the doctor goes with it.
I've only been on it for 5 weeks and it's too early to give advice on how long it takes, but from my understanding, it's really hard to give a generalized answer since every person here is responding differently to each and every med.
I'd say to do what you can and see where it takes you. Hopefully you trust your LLMD and then you will feel more comfortable about this direction.
Cathy
Posted by ladycakes (Member # 12619) on :
I actually was only on IV Rocephin for about 3 months, and it totally saved me. I can't believe how much difference just a few months of it made. I'm still doing oral antibiotics, but I went from functioning at around 20% to around 80% in just those three months.
But I think it differs for everyone. If you're thinking you shouldn't even bother with the three months, I'd reconsider. Maybe when nearing the end of that time, you can talk to your doctor/insurance and see if you're able to get it extended at that point.
Posted by zil (Member # 12048) on :
I've been on Rocephin almost 2 mos. and think I've plateaued. It's not helped my fatigue at all.
I still function about 20% on a good day. It has helped some symptoms---tingling, numbness, chills reduced, burning on soles of feet and across muscles in legs,arms,chest. Still have a time of it with my neck.
My LLMD will put me on a different antibiotic IV after this one. I've already done a year on orals. Questran has really helped with detoxing and my herx symptoms.
The Dr. I see thinks once you plateau on a med then move on to a different antibiotic. I don't know what is next. He mentioned claforan, primaxin, vancomycin etc. so there are lots of others. I'm glad I have a picc line for all this.
Can anyone tell me if they had a profound exhaustion all the time? I hate it.
Posted by tdtid (Member # 10276) on :
Yes Zil, I've had major exhaustion while on IV Rochephin, but still have this optomistic side in me.
Lyme4, back to your original question, I know when I was being put on IV but knowing it would be out of pocket, my doctor said not to bother unless I could commit to three months.
His particular view seemed to think that three months is where it WILL make a difference and wouldn't be a waste of time.
And most doctors change protocols in midstream if the see various symptoms, so try the 3 months and see where it goes. Good luck.
Cathy
Posted by lyme4 (Member # 10723) on :
Thanks, everyone!!
I too, have extreme fatique on rocephin. It is so bad, I just collapse, my legs can't walk anymore. My hands are getting crippled, my legs feel like weights, my glands around my neck are hurting and the doc said they are enlarged. Of course, headaches.
This is really working in the 5th week of IV.
I just hope 7 more weeks will be fine and not leave me like this with all these symptoms.