posted
Ok..so it looks like IVs are in my future, and possibly Rocephin (although I do have a choice of Claforan or Primaxin).
If I go w/Rocephin, and end up losing my gall bladder, is it really that much of a loss?
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi jloisu,
I don't know, but if I could do it over again I would try to keep mine. It must be there for a reason?
I had a pain in my side for years after it was gone and had trouble digesting fats. My doctor told me this happens to some people after it's gone but not all.
I guess sometimes there is nothing you can do especailly if it is diseased.
Good luck to you. Posts: 6641 | From Michigan | Registered: Jun 2001
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lyme_suz
Unregistered
posted
Hi,
Losing gallbladder in my opinion is better than not getting well.
But my daughter's experience is that 7mos later she is still having trouble with digestion.
As you probably know they reroute bile delivery from liver straight to small intestine or stomach--not through gallbladder. Can take a long time to get things running smoothly.
Also, body had harder time recovering from surgery when already weakened with lyme.
Have heard that you can have ultrasounds done to check for sludge that precedes stones.
For us, the decision phase is the hardest.
All said, not guts no glory. I am out to demolish this evil invader.
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
For me, Jloisu, the surgery wasn't a choice. I had two gall bladder attacks (the first one wrongly dx as acute gastritis). Both were so severe I had to go to the ER.
The bouts were about a month apart. With the second, I turned a fascinating shade of yellow; I was in excruciating pain.
I went straight from the ER to emergency surgery. They removed my gall bladder laproscopically.
In all, I was in the hospital 4 days (my first hospitalization stay). Although I went back to work within a week after surgery, I was still a little uncomfortable. Nothing that was unmanageable, though.
I've had no residual pain -- just about an inch-long scar. As Beverly said, digesting fats is tricky. I tend to be a pretty healthy eater (even before my recent Lyme dx), so usually that wasn't an issue.
I do remember once ordering lobster fettucini alfredo. That was a big mistake! Mostly, I don't ever even think about it, and it really does take an especially rich dish to put me over the edge.
By the way, my dog had his gall bladder removed about a month after I did (the vet said sympathetic sickness). His recovery took a lot longer, but he's fine now too.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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I have to agree about the gall bladder being there for a reason.
My LLMD had me on it by itself and I've read about actigall being presribed with Rocephin.
I was not on actigal and developed gallstones (coincidence??)
I haven't had any problems in i think two weeks.
-(me knocking on wood)
They wanted to take it out three weeks ago, but I didn't think it was necessary because it wasn't that bad and the sx disappeared after a few days.
I know in dr. b's guidelines there is an alternative to rocephin that has 5% biliary.... as oposed to rocephin's 95% - yeah, I stink at remembering but I got the #'s right!
I would definitely try to protect your gall bladder and I don't think you HAVE to sacrifice it for treatment. unless it's not working... Especially if you know about things like actigall or alternatives to rocephin BEFORE you start tx..
also, I'll be starting Primaxin since my LLMD finally came through after how many weeks. I've read great things on this so maybe you could do that? I don't know anything about Claforan.
What ever you decide I wish you all of the luck in the world with your tx.
I hope I've helped a little! I'm new at this and I'm sure more knowledgable members will be by soon.
-------------------- -Kimmi Just keep swimming! Posts: 251 | From East Greenville pa, usa | Registered: Jun 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I didn't mean my post to sound like I was an advocate for gall bladder removal.
I don't consider any major organ expendable and figure it's better to hold on to things until you no longer have a choice. That was my situation.
Until I got on this board, I had NO idea Lyme was so linked to gall bladder. Now I'm wondering if it's an organ especially vulnerable to this disease (my attack occurred in the 9 years between my tick bite/rash and treatment) or if it's the drugs that have such a bad effect.
Maybe some combination of both.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Thanks for all your responses. I know that everything serves a purpose, so I don't really want to lose it if I don't have to. Especially if that means even when I get better it will cause problems eating pizza!
I am in the process of deciding whether to change LLMDs. The one is prescribing Rocephin w/Actigall. I like him, but he is far away and feels that Rocephin is the best choice, and isn't considering any other alternative IVs. He feels that Columbia is still using it and they are in his words "much smarter than he is".
The new LLMD I just visited is closer (yet still a 7 hr drive each way). I don't feel quite as comfortable with him because he is very into the hormone treatment, heprin treatment, etc. (which is probably necessary), but is open to alternate IVs such as Claforan (that is the 5% bilary excretion that you are referring to Kimmi - cefotaxime sodium), but I have heard that people aren't having good luck w/it - am I wrong?
Then there is Primaxin. Heard good stuff about it, but it is pretty new and not many people out there to get feedback from.
Thanks,
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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bettyg
Unregistered
posted
Hi Joe, I had my gallbladder removed in 79; 25 yrs. BEFORE I discovered I had lyme disease misdx!
My gallbladder hospital experience was a daily soap opera. Every day if something wrong could go wrong, it did including a realy bad staph infection....there 12-14 days.
This began my irritable bowel/bladder trips; where now I live in my bathroom...ha.
Cutting those muscles still hurt me currently.
I do recommend laser surgery to avoid what I/many others went thru.
LOL.... Okay, I guess I did know a little about Claforan ...lol besides the stones, I think I did well on rocephin though, and wish I could stay on it. Maybe you could ask how people did with the actigal/ rocephin.. as far as any gall bladder problems. I think PQ is/was on it.
Andie, I don't think you sounded at all like you had any other choice, and believe me I'm only hanging on to it while I can. If it gets as bad as you were discribing.... It's outta here! I think the dr.'s I had were just a little cut happy. How's your dog?
-------------------- -Kimmi Just keep swimming! Posts: 251 | From East Greenville pa, usa | Registered: Jun 2005
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lymeloco
Unregistered
posted
I had no choice about having gb removed. My problems were before rocephin.
I haven't had any problems with it gone. My daughter both had there's out, and there not on antibiotics.
I ended up with pancreatiits from a stone getting lodged in the pancreatic duct. It was touch and go for awhile. Three weeks and 2 days in the hospital.
I was on tetracycline only a very short time when all hell broke loose. Sometimes it takes about a month or two for your body to adjust after surgery. You'll have to watch your fat intake for a month till your body adjusts.
My daughter went to work two days after her surgery. I never heard of actigal until I came on here, so don't know much about it.
The surgeon did not believe it was the tetracycline. He questioned whether it was the lyme. Llmd said we don't know.
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Who needs it anyway?
In my opinion also prostate is unnecessary.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Kimmi, Gall bladder surgery is so rare in dogs they had to call in a surgical specialist. They didn't do laproscopic surgery but cut him end to end. Then, he just couldn't seem to heal.
They kept calling us, telling us he might not survive the day...but he kept fighting. And the charges mounted.
Friends suggested several times that we let him go. All I could think was: if he really developed this sickness sympathetically, how could I possibly justify putting him down.
So I tapped into my retirement account. He was in the vet's for 8 weeks. Came away tired and stiff but fundamentally okay.
My S/O is a shiatsu massage therapist, and the pup's now a therapist assistant. He greets people at the door, leads them into the office, lies under the massage table for the duration of treatment then takes them back to the door when the session is over. He's 10 now. Not as spry as other Aussies his age, but he has a heart the size of Montana.
I just keep telling him I do not need him to get Lyme...
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
All I know is that after my dtr's gall bladder surgery, which she had to have due to severe pain, and not tolerating even any food, is when she finally started showing some improvment - this after 3 long years of getting worse and worse with her LD.
Now was that improvement due to the 13 months of Rocephin, or having the gall bladder removed that was harboring those nasty bugs!?!?!? We don't know..... but at least she finally started showing some improvements - instead of always getting worse and worse!!!!!!
We would do the same thing again - in hind sight. (Rocephin and gall bladder removed).
Posts: 720 | Registered: Oct 2000
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I don't miss mine at all!!! Some people can get diarrhea or nausea or gas more when they eat fatty foods without a gallbladder. My system was off-kilter for about 2 weeks after surgery and then back to normal- !!!!! Don't miss it at all.
But if you pulse and are on acti-gall you have a better chance of no problems. I did neither-!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
Mine burst from gall bladder disease well before I had Lyme. It was emergency surgery the old fashioned way--something I would not recommend.
I dont miss it.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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