My LLMD wants to put me on an IV for 3 months. can anyone tell me the pros and cons.
I've been on oral meds for 20 months, not much improvement. I have nuro Lyme.
I read somewhere that oral meds don't help nuro Lyme. Is that true?
Thanks
Posted by kimmie (Member # 25547) on :
I turned the corner with IV. I have neuro lyme too.
Posted by feelbetter (Member # 21957) on :
Does insurance cover for the IV treatment?
Posted by saved10 (Member # 18413) on :
Kimmie, how long were you on the IV treatment? Did you stop your oral meds prior to the IV treatments?
When did you notice you were getting better? How about side effects and herxing?
Was it worse then the oral meds? Are you now finished with the IV treatment?
And last are you still taking the oral meds (same dosage) that you were taking prior to the IV treatment?
Posted by WIGGY (Member # 15377) on :
I am going to try IV soon too - I've been treating lyme with orals for 27 months.
I have neuro lyme.
My doctor said he is not sure if I will turn the corner but I won't know unless I try.
Most insurance will only cover 28 days. Its expensive but for many it has helped.
Good luck - if you decide to try let me know. I plan to get started in Nov.
Posted by simela (Member # 27366) on :
I will start Rocephin for 28 days within a couple of weeks. My precertification for my treatement expires on Oct 28, so I will start before then. Anyone else on this drug? Did you get worse while on it and then got better? Were you able to function on your on while on it?
Thanks!
Posted by TS96 (Member # 14048) on :
To tell you the truth for me Rocephin has not done what I expected. I was hoping for my mental clarity seeing it crosses the BBB but instead I've actually seen improvement in my GI symptoms and my burning eyes have now stopped while on it.
None of the other oral abx touched my GI symptoms which are severe IBS with constipation, and a very slow and redundant colon. While the IBS is not totally gone it is much better.
Day 1 and 2 of iv Roc. I was really tired. I had a few days of severe aggitation. Around day 17 and 18 I had a burst of energy but it didn't last.
Now I'm in my second month and not much is changing anymore. My liver function tests are creeping up and trying to lower the numbers so I can stay on it for a least another month to see if I can improve some more.
hth
Posted by saved10 (Member # 18413) on :
Whats the longest someone has been on IV? Did it help?
Did your insurance cover it?
Where did they put the pick line?
My LLMD said the arm.
Posted by kimmie (Member # 25547) on :
Helllo,
My insurance covered the first 4 weeks of my iv with and an infectious disease doc. After my 30 day "cure" my PICC was pulled and I relapsed. Went on orals with an LLMD and that did not hold me.
I had another PICC placed in May. Been on IV since June. I have turned the corner and feel I am ready to come off and go to orals.
I have been lucky with herxing. I do have increased symptoms, but nothing that keeps me from functioning. I have made progress and my herxing now is mild. I did not take the same orals while on IV. The only oral I took was flagyl. IV rocephin and IV zith.
Posted by 2young2die (Member # 25434) on :
I've been on ceftriaxone for 6 months now, with a picc. I was dxd with lyme and ALS so this is the first drug I've tried. I feel much better but my weakness/atrophy is still progressing so I don't know if it's stopping the ALS.