posted
Looking for help, suggestions, stories etc..
I have been on IV Rocephin for over a year now and even with taking Actigall my ultrasound today showed I was full of stones.
I started having some pain back in September I believe, but Christmas night was the first time I had an attack. This past Sunday was the worst one by far. SEVERE pain, I couldn't even talk it hurt so bad and ended up throwing up etc..
I have not had a HIDA scan, is it really necessary knowing the stones are in there from the ultrasound?
Is there any chance going off Rocephin would help anything at this point? Anyone have their gallbladder out and want to share their story? How was your digestion etc. afterwards?
I am worried about surgery in general of course, but also how it will affect my Lyme disease.
Any help is greatly appreciated!
Posts: 76 | From IL | Registered: Oct 2010
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posted
I had my gallbladder out last March. I didn't know I had any infections at the time. The surgery was fine, but they gave me IV Levaquin and I couldn't stop sweating for about an hour after surgery. (Now I know it was Levaquin/Lyme-related).
I didn't need to take any narcotic pain killers afterwards. My digestion was more efficient. So, in my case, it was a good thing to have it out. It had been leaking bile unbeknownst to me for a while.
I'm terrified of surgery, I had a C-section in '09 without being fully numb and in comparison, this was a piece of cake.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Generally rocephin is associated with gallbladder sludging, which is reversible when stopping the drug. Don't know about stones though.
If you have to have it removed, you might want to have it tested for lyme, making arrangements in advance. Gallbladders are said to harbor spirochetes frequently.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Thank you both for responding. aperture thank you for telling me about your surgery. I have never had anything so I am pretty nervous at the thought of it.
poppy, I have heard about testing the gallbladder before, but if I know I am positive for Lyme what all should I be looking for?
My Dr mentioned trying a cleanse if I don't feel want to try surgery yet, has anyone tried this with success?
Also, if I have it removed are there any issues with continuing Rocephin in my PICC?
Posts: 76 | From IL | Registered: Oct 2010
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posted
I had my gallbladder out six years ago when my daughter was just 4 months old. I didn't even know I had Lyme at the time, and so I certainly wasn't treating it then, so I can't speak to that aspect of it.
I had the laparoscopic surgery to remove mine. It was day surgery and it went really well. I was told to expect to need to be in bed for up to a week afterward, but I was up and about the next morning taking care of the baby. *Not that I had to, by the way! My husband was taking great care of both of us, I was just feeling fine already!
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Do you know how to search the archive of lymenet? Look up at the top of the page, under "post a poll." Gallbladders have been discussed frequently on this forum, so there may be some useful info in those previous posts, found in a search.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Thanks MamaBear11, makes me feel better to hear people having successful stories.
Poppy, yes I have been searching and reading all the past posts Posts: 76 | From IL | Registered: Oct 2010
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Pls try to resolve the stones somehow w/o removing the gall bladder. Yes, it isn't absolutely needed, but a good friend who had it out a few years back, can't eat hardly any fats now w/o problems. I also have a sister who had another chest gland out when it was the only "cure" for her condition & she's been on $$ medicine ever since, like since 1977 - to treat the resultant cloitis!
They've figured out (sorta recently) that our appendixes were used to jump-start the intestinal tract with 'Good bacteria' after a bout w/ any sickness that "washed out" the GI tract, by isolating a 'sample' from the ravages of the disease. But with all the probiotics on the market now, like yogurts & kefir, that's ONE gland that we can have removed w/o worrying about too much. - - - I hope the doc can switch IV abx (to Clarofan?) if that's suspect in causing the stones. Is it possible to use ultrasound to break 'em UP... like with kidney stones?
Mybe there's a new med that'll help dissolve them, or maybe Actigall will help do that if the Rocephin is discontinued?
I never liked the idea of just removing a gland. :-/~
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I had a gallbladder attack on rocephin, but the problem did go away after I stopped the drug. Never had it scanned, so I don't know whether it was sludge or stones.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
A cleanse can be dangerous if it moves a stone into the bile duct and it gets stuck. If the stones are large, that probably won't happen, but it also won't do any good if they are large.
I had mine out in '05. Very easy surgery. I have periodically had trouble in that area, but am fine now.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
it was the easiest surgery i ever had -
my nausea went away immediately-
and i can eat most anything i want that is healthy for me: high protein-non processed-complex carbs
i do have some gi problems on and off but cant relate them to food...i dont eat a lot of fat tho
my gi problems have been related to other meds
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
All the fixes to get rid of your stones are dangerous. I almost did them and as it turned out there were stones stuck in my bile ducts.
So any kind of flush would have sent me to the ER and it would have been an open operation. I got mine out in November after much agonizing over it. I am fine and can eat any good fats without any issues. Any other digestive issues are Lyme related and are slowly getting better.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
I really appreciate the replies, it helps a lot. I have an appointment with a surgeon on Friday to see what he thinks. Of course not looking forward to explaining Lyme etc., but my LLMD thinks it is best to look into removing it at this point after seeing my ultrasound results. I have had stomach/GI issues consistently since I started treatment even before the IV Rocephin too (I already take lots of probiotics and yeast support etc.)
Anyone continue with IV after having theirs out?
Posts: 76 | From IL | Registered: Oct 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my positive story of the day is i had it out...took 10 days off work to recover...on the 3rd day drove 300 miles and found a house to buy.
in march in 3 foot of snow. really. i wish all my surgeries went so well.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I had my gallbladder out when I had Lyme but prior to diagnosis. Best thing I ever did - I was full of stones.
Just make sure you take the time to recover and you shouldn't have any problems.
I (respectfully) disagree with those who say to avoid surgery when you have a diseased gallbladder or have stones.
It's a very easy surgery but don't listen to the "three day" recover bull crap. Take it easy for a week to 10 days and you will be fine.
Posts: 1761 | From USA | Registered: May 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Ditto what mojo said - Gallbladder surgery was the best thing I ever did too. Cured me of 14 years of constant nausea.
I only had 1 painful attack, the rest of my "attacks" were more nebulous symptoms, things like indigestion after eating fats, vomiting without any warning, and stuff like that.
I had trouble with fats immediately after surgery, but once my body adapted, I've been fine since.
I also noticed an improvement in stool color/consistancy, and less severe constipation issues.
I did not know I had Lyme when my gallbladder was taken out, but it was very inflammed and full of huge stones, and I do not miss it one bit. I'm pretty sure Lyme had something to do with the inflammation.
I had a lot of pain after surgery, but a nerve block cured that. I think this was something unique to me, though, because I also had a bad case of RSD (a severe, chronic nerve pain condition that may also be related to Lyme/coinfections) at the same time and surgery is known to aggravate RSD quite a bit.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
I had mine out in 2007. I didn't know I had lyme. The surgery went well and I was up and about the next day. I avoided lifting for 2 weeks, as per doc's instructions, but I felt back to normal after only a couple of days. I didn't even need the pain meds that the doc prescribed. I did not have digestion problems before or after the surgery, unless you count gall attacks as a digestive problem. They were extremely painful!
Posts: 41 | From Ontario | Registered: Apr 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
For those who've had their gallbladder out, how long did it take your body to adjust digestion-wise?
I had mine out on January 17th. I'm having quite a lot of digestive trouble since though. hcl and lactic acid yeast help. But I still have a tremendous amount of gas and some diarrhea. I can't tolerate bile salts or enzymes, they make the gas way worse, and make me allergic to boot.
Posts: 3792 | From around | Registered: Mar 2008
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