Looking back over almost a year of treatment, I am seeing that IV Rocephin has had the most positive impact.
While taking it, my thinking was clearing up, and my cognitive skills were definitely coming around. The progress was slow but steady. As someone said on this board, Rocephin was my miracle drug.
It did a number on my gallbladder, so I had to come off. For the same reason, I am not able to tolerate the Omnicef/Ceftin versions; too much pain.
Are there other treatments out there that might work as well?
Thanks!
Posted by Snailhead (Member # 18091) on :
I don't know if this is an option, but can you maybe reduce your Rocephin to 1/2 gram four on three off, and perhaps take the rx Actigall?
Hope you can get on something that equals your prior progress. God bless you.
Posted by mazou (Member # 15319) on :
That's an idea. I am off IV now, but I could ask about the oral version.
I have been taking the Actigall. It works pretty well.
Thanks, Snailhead. I hope you are doing well in your progress.
Posted by steven (Member # 13101) on :
Rocephin was also my miracle drug. it made me painfree, but it never cured me. and finally i also had a gallbladdercolic. trying mino now, but consider to go back on rocephin (4g). but the problem is: you can stay on orals forever, but you cant stay on rocephin forever!
Posted by Vermont_Lymie (Member # 9780) on :
High-dose amoxy works well for many, gets through the bbb, and I believe is processed through the kidneys. Might that work and be gentle on the gallbladder?
Posted by mazou (Member # 15319) on :
Is Amoxy similar to Doxy?
Posted by Vermont_Lymie (Member # 9780) on :
No, amoxicillin is a beta-lactam, related to penicillin. Doxy is in the same family as minocycline.
Posted by MorningSong (Member # 19989) on :
Here is a link to a helpful chart for antibiotics:
Thanks for clarifying, Vermont.
Posted by Kreynolds (Member # 15117) on :
Tygacil is a good drug out there....
IV Doxy has always been my "miracle" drug. I have been on Tygaci and it was great.
Had to switch off because it was hard on my stomach.
Good Luck!!
Posted by Lisa1230 (Member # 17525) on :
How long were you allowed to stay on IV Rocephin? Our doctor is saying that if there is no improvement within three months then he has to stop it. We are in week seven with no improvements.
Posted by mazou (Member # 15319) on :
Lisa, it's a funny thing. I didn't realize I was seeing improvement with Rocephin either.
Then, I was pulled off while they scanned my gallbladder. While I was off, I took a nose dive. That was when I realized I was improving while taking it. My LLMD's PA said it happens all of the time.
The change is subtle and steady.
Thanks for the Tygacil suggestion, Kreynolds. I'll look into it!
Posted by mazou (Member # 15319) on :
Oh, Lisa, I forgot. I was on for 3 mos. total. Then they switched me to Doxy.
Posted by Lisa1230 (Member # 17525) on :
Thanks Mazou -- they have my daughter on the Rocephin IV and oral Doryx 200 mg/day. Fourth day on the Doryx and she had lyme rage badly!
Posted by mazou (Member # 15319) on :
The tetracyclines have been really rough on me as well. Hang in there; I think they really get in there and do the work.
Posted by Tracy9 (Member # 7521) on :
I've been off it for about 3 weeks now after 10 weeks on and it's hell. All my pain and tremor and many other things had gone away, and they are all coming back. It sucks.
The only positive is that I was fatigued while on it I coudln't get out of bed; now I'm getting up more.
Posted by hcconn22 (Member # 5263) on :
Did 1.5 years of multiple orals.. Then started Rochephin 8 weeks ago-- really has helped after four weeks. Looking to stay on for 4-6 months max. Also on Actigal.