Last time I took IV meds was about 8 yrs ago and the only one available was Rocephin. I have heard there are others now and was wondering if there are any that are good for Chronic Neuro Lyme which I have had for over 25 yrs.
Posted by keltyl (Member # 14050) on :
That's a good question, been wondering that myself. I know there are others. Doig rocephin now. Anyone?
Posted by pas (Member # 22416) on :
I am currently on IV Doxy. According to what I've read of Dr. B's, 400mgs IV can cross the BBB and hit neuro Lyme. My LLMD agrees.
The trick is to get blood levels high enough, which is tricky with oral Doxy.
I started on Rocephin but couldn't tolerate it (allergy and liver issues).
I will start IV Zithromax in a few weeks as well, then oral Rifampin if possible.
In addition to Lyme I have Bartonella, HME, mycoplasma. I have a bunch of symptoms but neuro are the most bothersome.
Posted by lynnic86 (Member # 3634) on :
thank you Pas for your input. Do you have a picc line in now or a central line? The last time I was to do IV meds they had a lot of trouble putting in the picc line, so I was wondering what a central line would be like?
Posted by pas (Member # 22416) on :
Hi Lynnic,
I have a PICC. I also had a lot of trouble with the procedure...ugh. Long story. Sounds like you can relate!
Honestly, I wanted a port but I have some other problems and can't be put under general anesthesia unless absolutely necessary.
That said, after the first couple of weeks the PICC felt better. Now I barely notice it (it's been about 6 weeks).
The Doxy is caustic to the veins, so you'd need a PICC or port for sure if you were going to use it. Apparently Rocephin can be used with a normal IV...
For instance, my LLMD offers Rocephin treatment in his office, and some people choose to go there each day for treatment. I wonder if your doc would offer something similiar (if he/she is convenient to you, that is!).
Posted by Tracy9 (Member # 7521) on :
I'm curious about this; I was recently in the hospital for meningitis and was on (all together, yes) IV Vancomycin, Gentamycin, and Ampicillin. Are the latter two effective for Lyme?
I've run through Rocephin and Claforan for Lyme, my LLD does not believe IV Zith is any more effective than oral zith, no way am I touching Tigecycline, so I feel all that's left is Doxy or Vanco....wondering about these other two?
Posted by Haley (Member # 22008) on :
I've done Rocephin off and on for months. I eventually developed some sort of reaction and I believe it caused systemic yeast. I now am on IV Doxy 300 mg a day. I have a port in my chest. I have not had problems yet (Thank God). I have heard of some horror stories with port infections.
I know that some people have had good results with IV Flagyl. That sounds a bit scary to me but I hear that some people have amazing results with it.
I've tried Tygecyline for 2 weeks. It's very rough. I recently saw a well known LLMD and he says that every patient that has tried it has had a very difficult time with it.
I'm not sure what my next step will be for IV.
Good Luck.
Posted by lynnic86 (Member # 3634) on :
Thank you everyone for your input. I didn't realize there were so many other choices out there now. I will talk to my LLMD on Tues and see what she has to say.