I am going back on Rocephin and I have heard so many stories that it doesn't work. Does anyone out there have a glimmer of hope on Rocephin. I am suppose to start today.
Thanks
Posted by Cold Feet (Member # 9882) on :
I saw that no one posted -- that's why I am now. I've heard from many people treated with this drug, but no one (from my small # of talks or observations) got better. I hope this is not the case and people are getting better...
This is also a drug that can cause a build-up of biliary sludge, so one might consider a liver cleanse or Actigall (or both!) after taking this med.
Just my 2 cents.
Posted by Abxnomore (Member # 18936) on :
I think it's a waste of time. It was one of the first IV ABX used early on when LLMD's were first learning about his illness.
There are now much better IV ABX out there, which are not known for wrecking your gallbladder.
Posted by Cold Feet (Member # 9882) on :
Good validation, ABX...unfortunately! So if this is the case, why are "top" docs still using this drug? I really don't know, that's why I am asking.
Posted by Hopeful2010 (Member # 22958) on :
I started on it again today because this is the only IV my current doc will give. I'm so nervous that I'll get gall stones or relapse. Do you know what the preferred IV abx is these days for Lyme. I'm still hoping to see a post of a success story. I know one person that it "cured" he also did a plethora of Flagyl.
Posted by xoxoxox (Member # 18778) on :
Abx- What are some other IV abx options that are more effective than Rocephin?
My LLMD had me on it along with Actigal for the gallbladder sludge before my PICC had to be pulled because of an issue.
They are supposed to put another PICC in next week and it would be nice to discuss other options,
Thanks!
Posted by springshowers (Member # 19863) on :
To people who have been through the IV route.
What were the best IV drugs you did????
Would love to see a list too..
Posted by Hopeful2010 (Member # 22958) on :
Danni,
How long were you on Rocephin and do you feel that you made any progress?
I also would love to see list of IV abx that worked best for those IV users out there.
Posted by dmc (Member # 5102) on :
Took 28 days IV Rocephin and felt great on it...but 2 days after last dose, symptoms worsened, and that lasted for several more days. Don't know if there was any positive effect long term that can be attributed to the drug...
Posted by KS (Member # 12549) on :
I was on Rocephin for 28 days and it definitely helped me with some of my symptoms (i.e. internal vibrations, anxiety). Unfortunately my liver enzymes climbed to 900 while on it so needless to say, 28 days was it for me.
It took another year of a variety of orals and bicillin injections to really help me turn the corner though
Posted by riverpatrol (Member # 12182) on :
I started IV rocephin after I had been on various orals for over 1 1/2 years. The improvement was dramatic! It wasn't real fast, it was month by month, but it was far better than anything else I had been on.
Posted by canefan17 (Member # 22149) on :
I'm on doxy + rocephoin + plaquenil right now.
it's working wonders for me.
I'm hoping that it's not because the bugs have all turned into cyst form.
But oh well... Flagyl starts tomorrow Posted by coltman (Member # 21272) on :
quote:Originally posted by canefan17: I'm on doxy + rocephoin + plaquenil right now.
I'm hoping that it's not because the bugs have all turned into cyst form.
It most likely is. Though cyst form is the metabolically inactive form. -this is the way it avoids abx actions (cause they disrupt bacteria metabolism)- I hate this damn bacteria, and our inefficient and unreliable immune system which fails to kill it.
Posted by Hopeful2010 (Member # 22958) on :
HI Canefan,
Are you adding Flagyl to the protocol or are you replacing plaquinil with Flagyl?
I'm on similar meds. I think that I need to add Flagyl but my doc doesn't like it.
Posted by xoxoxox (Member # 18778) on :
Hopeful, I was able to get a little less than two weeks of I.V. Rocephin before the PICC had to be pulled.
No changes had occurred for me in that time but the office manager at my LLMD's said it was about a month before she herxed.
When you start Rocephin again, will you also be taking something for the biliary issues (like Actigal)?
Posted by triathletelymie (Member # 26456) on :
Up
Posted by AlanaSuzanne (Member # 25882) on :
Hopeful, my daughter was on IV rocephin for 5+ months (actigall is necessary while on this med).
Improvement came about 3.5 months in...wonderful. But once rocephin was stopped, she went downhill.
In retrospect we found that there is a lot more to recovery than IV abx. Yeast especially needed to be addressed. And her immune system needed to be built back up.
The best thing for her thus far has been the schardt protocol----alternating between penicillin and diflucan. She is also on many supplements to help rebuild her immune system.
That said, some have had sustained improvement just from the rocephin.
If I personally had to do it over again knowing what I know now, I'd skip the rocephin in favor of orals for Lyme. I'd investigate the possibility of coinfections and pursue aggressive treatment of those. I'd also begin a regimen of supplements to treat Lyme/cos as well as support the immune system.
FWIW, we never had a problem with the picc line. A good interventional radiologist is the key.
Posted by LSG Scott (Member # 21624) on :
iv Rifampin was the best iv drug for me really helped me turn a corner
then switched to tygacil and at all went bad for me
Posted by 2young2die (Member # 25434) on :
I've been on ceftriaxone for 5 months now. It has helped alot but I still have coinfection symptoms: ringing ears, numbness in face hands and feet, crawling sensations under skin, muscle atrophy and arm weakness, fatigue.
It doesn't sound like I'm doing better, but I really am. I was also dxd with ALS and the muscle wasting has stopped and is slowly reversing.
My llmd is afraid to add other meds with the ALS possibility so he is staying with the ceftriaxone (generic rocephin) as long as I continue to do well.
Posted by kimmie (Member # 25547) on :
2y2d,
Yeah! I am so happy you are doing well. Muscle wasting stopping and reversing is the best sign.
I know Dr Martz treated for babs too. Perhaps you can address the coinfections at a later time once things are even more improved. You made me smile just knowing you are improving...thanks so much for sharing. I am so happy.
![[Smile]](smile.gif)