I'm about to have my gallbladder removed. My LLMDs and I are running out of antibiotic choices to put me on post-surgery.
One antibiotic that has been chosen is Ceftin. But my LLMD wants me to be at 1,500 mg./day post-surgery. Isn't 1,000 mg/day (500 mg. twice a day) the usual dose?
My other Lyme pals were on 500 mg. twice a day of Ceftin, but for Lyme, not Lyme and surgery together. I presume my LLMD wants me on aggressive therapy post-Lyme.
However I am sensitive to most meds and often can't tolerate a full dose. I did, however, tolerate Omnicef fine three years ago, and I think it's similar to Ceftin.
What are your dosage experiences with Ceftin?
He also wants me on Minocycline which I know can cause horrible dizziness and CNS problems. Many Lyme/Bart patients like me I know, including my father, abandoned Mino due to the CNS problem. Never been on it.
I've done great on Doxy, but built up a tolerance to it twice, otherwise LLMD would like to use it. Did fine on Omnicef and also Bicillin. Developed liver failure from Ketek. Tolerated half-dose of Rifampin until recently. Damaged Achilles Tendons from Levaquin.
So you can see the dilemma.
I presume the surgeon will give me IV Rocephin or something similar during surgery. I meet with him today for my consult.
Thanks, Jill E.
Posted by Lymetoo (Member # 743) on :
Why not Biaxin or Zith?? All of the cephalosporins cause sludging in the gallbladder. I know you're having it removed...BUT...
I had mine removed 2 1/2 yrs ago. Since then I've been having GB symptoms off and on. After having been on abx since July for a bad sinus infection, I now have possible stones in my bile duct.
Same GB type symptoms, only worse!!
I just want to warn you to steer clear of Rocephin or cephalosporins if you can.
You will be right back where you started.
When I was on Keflex, I was prescribed 3 - 500mg per day. Later, my dr upped it to 4 per day, so I don't know what to tell you on the dosage.
All I know is I FINALLY figured out that it was causing me terrible problems!!
When's your surgery?
Posted by Jill E. (Member # 9121) on :
Hi Miss TuTu,
Thank you for the advice. I just saw your posts about what you are going through. I really appreciate your input on this.
All my doctors - LLMDs and internist, and perhaps hepatologist - are a bit worried about any of the macrolides because I went into liver failure with Ketek. They are pretty sure it was just Ketek that caused it, but there is a teeny chance that my liver would have a memory and react similarly to anything related - and Ketek is a distant cousin to the macrolides.
I will try to run all this by my LLMDs although one is heading out of the country this weekend, the other works part-time, but I'll see what I can do.
I don't have a surgery date yet. I'm meeting with the surgeon today.
I keep reading about gallbladder patients who continue to have problems post-surgery. Ugh.
It is my pancreas I am most worried about. I have mild pancreatitis (lipase keeps elevating, upper abdominal center aching) and the guess is that it's the gallbladder causing it but who really knows.
Jill
Posted by dch1112 (Member # 13148) on :
When I started treatment in 10/08 I did 2 months of Ceftin at 500mg 3X a day.
The next month 500mg BID.... and the 4th month 500mg a day. I really started feeling better after the 3rd month. By the 4th I would say I was 90-95%.
The 5th month I slowly weaned down to stopping the abx.
I made it about a week until the ole flu like symptoms, brain fog and fatigue came roaring back...
I was then put back on Ceftin 500mg BID. I've been at that level for 1 1/2 months. I feel about 90%.
I see my LLMD tomorrow ..and will see what direction to go w/ the Ceftin..hopefully down!
peace, dch
Posted by Lymetoo (Member # 743) on :
JIll....or maybe the pancreas is the entire problem? Who knows?
I'm also trying to get off Prilosec as it can cause big troubles for the GB.
I've taken it for years!
Sorry to hear about the macrolides. What's left?
Posted by Jill E. (Member # 9121) on :
DCH and Lymetoo,
Thank you both for your additional comments. They are very helpful.
I just saw a fabulous surgeon who was very willing to let me educate him about tick-borne diseases.
He thinks it's very likely that my gallbladder is fine, not filled with sludge. But that my vagus nerve is causing it not to function, and then I get backflow from the pancreas, liver, etc. He sees vagus nerve problems affecting the gallbladder in people with neurotransmitter problems such as on anti-depressants. I said that many of us with tick-borne diseases develop abnormal neurotransmitter problems from the diseases.
He didn't know until I told him that many of us with tick-borne diseases have vagus nerve problems (I have them big-time with Bartonella) and I told him about the article by Virginia Scherr called "Bell's Palsy of the Gut."
So the question is whether to remove the gallbladder or not, because if I can't get the vagus nerve problems under control, I may continue having gallbladder and pancreas problems. Much to think about. I will re-read Scherr's article.
In the past when I tried to take supplements for the neurotransmitters, I felt faint.
I know Bartonella gave me vagus nerve problems because the tremors and myoclonus all seem to stem from the vagus nerve area.
SO much to think about.....
Jill
Posted by Lymetoo (Member # 743) on :
Oh boy. I need to go read that again too!
Posted by Amanda (Member # 14107) on :
I've been taking 2,000 mg of Ceftin a day for almost a year. Remarkably free of side effects for me at least.
Posted by Jill E. (Member # 9121) on :
Thanks, Amanda, for your comment. That gives me peace of mind that my prescribed dosage is within limits.
Jill
Posted by WildCondor (Member # 434) on :
Ceftin is pretty simple stuff, and 1,500 mg is a normal dose. For Lyme, if Ceftin is your main antibiotic, it should be 2,000-3,000 mg. I took 3,000 mg Ceftin per day along with 2,000 mg Biaxin and 1.2 MU of Bicillin 3x per week, then added Flagyl pulsed and that was awesome.
Posted by Jill E. (Member # 9121) on :
Hi WildCondor,
Thanks. I tolerated Omnicef great, so I presume I'll be fine with Ceftin. It's just that I have to be on conservative treatment in general. I'm more worried about the Minocycline, almost everyone I know gets very dizzy. And when my dad was on it, it blackened the skin on his hands, which can happen with Mino in some cases, and it hasn't gone away after months!