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Posted by sfcharm (Member # 9392) on :
 
How many Gallbladder attacks is enough before you have it removed?

I'm on Rocephin IV daily for five months and was told up front that I may lose my gallbladder. I'd like to continue on the Rocephin for at least nine months as I am just now feeling a huge benefit and difference with the Rocephin IV.

I've had four attacks in four weeks and most recently two nights ago ended up at the Emergency room in severe pain and vomiting. The pain is unlike anything I've ever had and I've had five kids.

They sent me home with pain pills and nauseau pills. I will see my GI Dr. next week. I just don't know enough about all of this to know how many attacks warrant removal.

I've been told I have stones and it's probably only going to get worse, your thoughts or experience is appreciated.

Barb
 
Posted by Lymetoo (Member # 743) on :
 
Are you taking Actigall??? If not, ask your dr about it ASAP!!!

How many attacks is enough?? As many as it takes to get your attention!!
 
Posted by jenschasinglyme (Member # 11193) on :
 
Hello there,

I am not sure if you read any of my posts, but I had gallbladder attacks for about 2 weeks.

I was/am in Chico when it happened doing the oxygen therapy and thought for sure it was my gallbladder and scheduled a ultrasound a few weeks out.

What happened then was at around 3:00 A.M in the morning I had an acute painful attack and could not stop vommiting violently.

Luckily I had a friend with me who had been through it and made me go to the ER.

They did the ultrasound and said it needed to be taken out.

I took it out 2 days later.

You will not be able to continue the IV Rochephin if you are having that many problems with pain and stones.

It's a crappy choice to make but you will have to decide, gallbladder or rochephin.

I also know if you continue to have a disease gallbladder it can create some other complications with your pancreas and really hurt you let alone stall your treatment.

I am happy that I got it out so I have the option to stay on IV and hopefully will get into remission.

I would'nt waste to much time trying to figure out if you should get it out.

You will continue to just get sicker and the rochephin will just agitate it.

Not a doctor, just going off what happened to me within the last few weeks.

Mitch Hoggard who runs the Chico Hyperbaric suggessted I get it out ASAP as well in addition to my wonderful LLMD and the LLMD that over see's my treatment here in Chico.

Good Luck and let me know how it goes. I hope you feel better soon and stay away from fatty foods until you got it figured out!!!

Jenifer
 
Posted by Aniek (Member # 5374) on :
 
My understanding is that if there is a big enough stone, you need the gallbladder out. You might be able to break it up still with Actigall.

But be aware that stones can get caught in ducts and if the stone punctures the duct, according to my LLMD you have 15 minutes to get medical treatment. It's like an appendix bursting.

Did they see stones in the hospital?
 
Posted by sfcharm (Member # 9392) on :
 
Thanks all for posting. Yes they saw the stones, they were small stones but they said it really didn't matter.

I've been on ursidiol 600mg from the begining.

Jen I think you're right, I need to not waste any time and make a decision. I'm sure it's going to be that my gall bladder comes out. My last episode was so violent I know it's not something I can continue to worry about.

What was your recovery like and how long did you have to stay in the hospital?

Barb
 
Posted by Mommy*of*3 (Member # 11688) on :
 
I was just talking with someone about this. She seemed to think that so many lyme patients having their gall bladders removed was not a good thing. I think it affects vitamin D, which is necessary to produce natural killer cells. Research it well before you have to go into surgery.
 
Posted by kelmo (Member # 8797) on :
 
Does Actigal work? My daughter has been having stone issues and we asked about Actigall and the LLMD said he took it for his and it didn't work.

Also, someone here sent me to a link that told you how to cleanse your liver and gallbladder. It was an all day event that involved drinking lots of epsom salt water, and CUPS of olive oil

It looked frightening. What if something got stuck in a duct?
 
Posted by Keebler (Member # 12673) on :
 
-


I wonder if a warm heating pad would help. I don't know if anything can compare with the Rx, but this is just for thought.
Hope it settles down.

=====================================

That olive oil thing could be dangerous. My ND said that she knew another doctor who examined that and found that the round blobs eliminated that a patient thought were gallstones were actually from the chemical effect of the olive oil and lemon.

I think it could actually cause an attach and is seriously hard on the liver to drink that much oil at any one sitting.


Coffee would be a better choice if your stomach could handle some . . . but I've just read that in mention, not studied it.
There is some reference to that in one of the articles below.

In an emergency, however, swift medical help is vital - but I hope it does not come to that.

=================================

Here are three articles of interest. Note the herbal formulas are prescribed by an acupuncturist or a naturopathic doctor.
There must be many in the San Francisco area.

TREATMENT OF GALLSTONES WITH CHINESE HERBS AND ACUPUNCTURE

www.itmonline.org/arts/gallstones.htm

and

Chlorogenic Acid for Healthy Liver and Gallbladder Function

www.itmonline.org/arts/chlorogenic.htm

and

Gallstones

http://oneearthherbs.squarespace.com/diseases/gallstones.html

-

[ 02. December 2007, 04:13 AM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
-

www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search: gallstones, coffee - 26 abstracts

==========================

http://tinyurl.com/yrddvw

Gastroenterology. 2002 Dec;123(6):1823-30. Links

Coffee intake is associated with lower risk of symptomatic gallstone disease in women.

Department of Nutrition, Harvard School of Public Health, Boston, Massachusetts, USA.

BACKGROUND & AIMS: Metabolic studies have shown that coffee affects several hepatobiliary processes that are involved in cholesterol lithogenesis.

We previously showed that coffee drinking was associated with a lower risk of symptomatic gallstone disease in men.

Excerpt:

CONCLUSIONS: These data suggest that consumption of caffeinated coffee may play a role in the prevention of symptomatic gallstone disease in women.

PMID: 12454839 [PubMed - indexed for MEDLINE]

====================================

From PubMed Search: gallbladder, herbs - 3 abstracts

http://tinyurl.com/26y9s7

Zhong Xi Yi Jie He Xue Bao. 2007 Mar;5(2):179-82. Links

[Effect of traditional Chinese herbs for nourishing the liver on intracellular free calcium level in gallbladder cells of guinea pigs with gallstones] [Article in Chinese]

Shen P, Fang BJ, Zhu PT, Zhang JZ, Pei XJ.

Department of Hepatobiliary Surgery, Longhua Hospital, Shanghai University of Traditional Chinese Medicine, Shanghai 200032.

OBJECTIVE: To observe the changes of intracellular free calcium level ([Ca(2+)]i) in gallbladder cells of guinea pigs with gallstones so as to study the mechanisms of gallstone formation and the prevention and treatment function of traditional Chinese herbs for nourishing the liver.

METHODS: Eighty guinea pigs . . .

RESULTS: The [Ca(2+)]i in gallbladder cells of guinea pigs in the untreated group was decreased significantly. NLCD improved the behavioral signs of the guinea pigs, significantly decreased the formative rate of gallstones and increased the [Ca(2+)]i in gallbladder cells.

CONCLUSIONS: The [Ca(2+)]i in gallbladder cells is the important factor for contractile function of gallbladder and the information of gallstones.

Traditional Chinese herbs for nourishing the liver may significantly increase the [Ca(2+)]i in gallbladder cells to facilitate contraction of the smooth muscle cells of gallbladder and relieve the cholestatis.

It may be one of the mechanisms of traditional Chinese herbs for nourishing the liver in preventing and treating cholelithiasis.

PMID: 17352876 [PubMed - in process]


Related Links

[Inhibiting effects of recipe for dispersing stagnated liver qi to promote bile flow on cholesterol gallstone formation in guinea pigs] [Zhong Xi Yi Jie He Xue Bao. 2006]

[Experimental study on effects of herbs for nourishing and smoothing the liver in reversing bile lithogenicity of guinea pig] [Zhong Xi Yi Jie He Xue Bao. 2003]
 
Posted by Aniek (Member # 5374) on :
 
Kelmo,

I think Actigall can work when the stones are small enough, but it doesn't always work.

I would be very nervous about trying the cleanse when you actually have stones, rather than when it's just sludge.
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by sfcharm:
I've been on ursidiol (Actigall) 600mg from the begining.

Then you may as well throw in the towel!!! Or abandon Rocephin.

I had mine out 2 yrs ago and it was a necessary thing for me. I had 5 HUGE stones and had been suffering with the pain for a yr and a half.

kelmo...The Actigall helped stave off the surgery as stated above. That and following a strict GB diet.

PS...I didn't dare try the cleanse, as I didn't want emergency surgery at a time I DIDN'T choose!!!
 
Posted by Keebler (Member # 12673) on :
 
-

Just a thought - many people have small gallstones and don't have attacks. So the rocephin and the "sludge" can trigger attacks, but is it from the gallstones or from some other mechanism?

Secondary porphyria is getting more study with other chronic infections, so I wonder if - for some - a porphyria attack of sorts may be part of this picture.

I have much more information on this, but will just post two sources that seem most relevant. The Cpn article seems to mirror lyme tx considerations, too.

If you want more, I have a other sources. Perhaps asking your LLMD about this might help. In the meantime, if there is a connection, you might just want to be sure you don't fast. Frequent small meals with healthy slow-carbs and low in red meats are best. While sugar is not great for candida, IF porphyria is a player, a sports drink might ward off more serious problems (but I'd also do probiotics, etc. if you do this).

Beta Carotene helps me a great deal. If you can, a glass of organic carrot juice might just be the ticket. (I say organic because, if porphyria is involved, the liver can't detox the farm chemicals used on conventional crops.) Green powders seem to really help me.

Again, best of luck.

================================

www.cpnhelp.org/secondaryporphyria

Secondary Porphyria: what you should know before starting a CAP

Submitted by Jim K on Wed, 2006-02-08 11:18.

Cpn induced secondary porphyria

Treatment of Chlamydia infection may exacerbate pre-existing genetic porphyria or more likely cause a secondary acute porphyria by making the intracellular Chlamydia more active or by killing infected cells that already are loaded with high porphyrin levels.

Some of what is mis-labeled as a ``herx'' reaction to treatment, is actually an acute porphyria reaction and not a reaction to bacterial endotoxin which is what a true herxheimer reaction is referring to.


What is Secondary Porphyria?

Porphyrias are diseases in which the heme pathway has malfunctioned. They can be genetic or be secondary secondary to another disease process.

Part of what is so special about the thoroughness with which Dr. Charles Strattoni and his colleagues have studied Chalmydial disease is their discovery that Cpn interferes with the heme pathway, and that many patients with chronic Cpn infections have secondary porphyria to start with, and that this is further exacerbated under treatment.

When you understand more about porphyria, it can help you sort out "die-off" as well as chronic symptoms you have, which may be due to heme byproducts-- and how to treat for it.

== more at link above
- and there are other sources on Secondary Porphyria


==========================


http://tinyurl.com/2oty85

excerpt: fluid adsorbed to the Enterotest string after gall-bladder contraction can be used to determine biliary porphyrin composition

Eur J Clin Chem Clin Biochem. 1995 Jul;33(7):453-62.Links

Evaluation and clinical application of the Enterotest for the determination of human biliary porphyrin composition.

[authors at link]

Central Laboratory for Clinical Chemistry, University Hospital Groningen, The Netherlands.

The Enterotest string test is an easy and non-invasive method for sampling duodenal fluid, which has been successfully used for the analysis of duodenal microflora, as well as biliary bile acid and lipid composition.

The method was evaluated for determination of porphyrins in duodenal bile in normal subjects and subjects with porphyria, following cholecystokinin induced gall bladder contraction; it is known that analysis of biliary porphyrins is more discriminatory for the diagnosis of asymptomatic porphyria than their analysis in faeces or urine.

Moreover, serial analysis of bile from patients with erythropoietic protoporphyria may help in establishing their ability to secrete protoporphyrin in bile and to assess effects of treatment.

The binding of various porphyrins to Enterotest strings was investigated by incubating pieces of the string in different human bile samples with low to very high porphyrin concentrations, followed by HPLC analysis of porphyrins both in the native bile and in extracts obtained from the strings.

No differences between porphyrin composition in native bile and extracts were observed. Duodenal fluid obtained by means of the Enterotest from volunteers not receiving cholecystokinin showed large variations in porphyrin patterns not resembling those of native bile. Mesoporphyrin, a secondary porphyrin derived from protoporphyrin by bacteria, was often detectable. These data indicate that the duodenal content without cholecystokinin injection does not reflect biliary porphyrin composition.

The presence of mesoporphyrin in the whole intestinal tract, but not in serum and bile, suggests that there is no enterohepatic circulation of secondary porphyrins.

There was close agreement between the porphyrin ratios found with the standard duodenal intubation technique and the Enterotest, performed simultaneously in one healthy volunteer after induction of gall bladder contraction by cholecystokinin.

From these experiments, it was concluded that fluid adsorbed to the Enterotest string after gall-bladder contraction can be used to determine biliary porphyrin composition. Since duodenal bile is diluted gall bladder bile, variable porphyrin concentrations were found when applying the Enterotest in combination with cholecystokinin in the same subject on successive days.

However, porphyrin ratios, such as the protoporphyrin to coproporphyrin I ratio, were relatively constant. In subjects with symptomatic variegate porphyria, the Enterotest showed highly aberrant porphyrin patterns, with increased protoporphyrin to coproporphyrin I ratios and, in addition, the presence of some unknown porphyrins.

A deviating biliary protoporphyrin/coproporphyrin I ratio in one patient appeared to be a useful diagnostic index for the presence of latent variegate porphyria (or variegate porphyria in remission).(ABSTRACT TRUNCATED AT 400 WORDS)

PMID: 7548456 [PubMed - indexed for MEDLINE]

=========================
=========================

http://www.porphyriafoundation.com

AMERICAN PORPHYRIA FOUNDATION

==========================

http://www.cpf-inc.ca/

CANADIAN PORPHYRIA FOUNDATION

Call (in Canada) 204-476-2800
or U.S. toll-free at 1-866-476-2801

==========================

-

[ 02. December 2007, 01:47 PM: Message edited by: Keebler ]
 
Posted by klutzo (Member # 5701) on :
 
I had my gallbladder removed in April. I was fine for 5 months afterwards, but then I decided it was OK to eat a very high fat meal on a special occasion. I've not been the same since.

All of my symptoms came back, just like before surgery. I've been this way for more than 2 months now. This happens to between 20-40% of people who have their GB's removed, and that is a pretty high number.

There are several causes of post-cholescystectomy syndrome, and none of them are easy to treat. Some of the testing and treatments have dangerous side-effects and are contra-indicated for me.

Chronic pancreatitis, Sphincter of Oddi dysfunction, stones stuck in ducts, strictures and adhesions, and small bowel bacterial overgrowth are some of the most common problems.

I am now stuck with a very low fat diet for the rest of my life, a very expensive prescription to help me digest fat (though it does not work well at all and I am still sick), and a dangerously low HDL cholesterol, due to the low fat diet.

Since fats are necessary for proper brain and endocrine function, who knows what this will do to me. I've already been told I will develop fat soluble vitamin deficiencies.

It sounds like you will have to have your GB removed in order to continue Rocephin since your problems are so severe. BTW, I have never taken Rocephin or any other ABX. Lyme did this to me all on it's own.

For those who are not in this bad of shape yet, I would try everything possible to prevent having it removed. It goes without saying that high fat diets should be avoided at all costs.

You can also find a list of foods that aggravate the gallbladder at [URL=http://www.gallbladderattack.com, and avoid those. Eggs top the list, causing attacks in 95% of people with GB problems.

I had 3 months of intensive acupuncture and Chinese herbs to try to prevent surgery and it was useless. I have a very good TCM doc who has helped me a lot with other things, but my GB was just too far gone.

I have often wondered if I might have secondary porphyria, since I cannot stick to a low carb diet without becoming seriously ill to the point where I shake, shiver, get very nauseous, and become almost too weak to walk. However, I hae found that getting ducks to listen to this idea is next to impossible.

Klutzo
 
Posted by Robin123 (Member # 9197) on :
 
Sorry to read this today. Hope you can sort it out with everyone and make the best decision.
 
Posted by Keebler (Member # 12673) on :
 
-

Klutzo, you are right about most doctors not listening. However, I just read about one in your state who was very informed. I don't know where I read it, though.


Here's another link about porphryia in the Cpn treatment - again, it mirrors lyme tx - porphryia references are peppered throughout the article.


www.immunesupport.com/library/showarticle.cfm/ID/7938

Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia

excerpts:

. . .

Secondary Porphyria. Depletion of host cell ATP by Chlamydia pneumoniae means that your cells don't have enough energy to complete their normal biochemical reactions.

One of these, the production of heme [the deep red iron containing component of hemoglobin], requires lots of ATP to come to completion. ATP depletion results in incomplete heme production and a build up of the incomplete byproducts called porphyrins.

Porphyrins are neurotoxic and have numerous deleterious effects on the nervous system including anxiety, depression, bowel and digestive disturbance, and interference with sleep, rapid pulse, and even psychosis.

. . .

- Porphyria is notorious for causing chronic gut distress

(full article at link above )


- Better go slurp up my Greens' Drink now. Ymmmm.


-
 
Posted by Looking (Member # 13600) on :
 
I did the regular Gallbladder Flush once and found it too harsh, but since finding the mini gallbladder flush I have no problem with using this periodically, I find it quite mild.

The following formula can be used once weekly for 8 weeks as a gentle cleanse for the liver and gallbladder and is also helpful for those who have had their gallbladders removed.

I usually drink a lot of organic apple juice the day before as the malic acid in apples is supposed to soften any stones. This is a good way of maintaining liver/gallbladder health.

Mini Liver/Gallbladder Flush (Gentle):

Mix the following ingredients together in a blender:

1 cup organic tomato or grapefruit juice (fresh is best)
1/4 cup organic olive oil (extra virgin)
1 tsp. crushed fresh garlic
1 tsp. organic turmeric powder

Blend until smooth. Divide into 2 equal size portions. Drink one portion first thing in the morning, then the other portion 15 minutes later.

Wait 90 minutes before eating. Herbal cleansing teas may be consumed during the 90 minute waiting period.

Variations: A little lemon juice can be added to replace part of the tomato or grapefruit juice. Finely grated ginger can also be added, if desired.

This is not much different than making an oil based salad dressing as far as the amount of olive oil goes.

Avoid additional oils or fats such as butter, oil, dressings and fried foods in order to maximize the flush. Eat as healthy as you can for the rest of the day (I know, every day we should try to eat healthy but that's not always reality).

As always, be careful when trying anything new. There may be some who are too sensitive to even tolerate this amount of oil.

Looking
 
Posted by kelmo (Member # 8797) on :
 
Keebler! That makes perfect sense that the "stones" shown on the website that I visited could be olive oil clumps. Otherwise, it would be impossible to pass a stone that size through the ductwork.

I remember when my husband had his kidney stones, they caused immense pain, and we could never see the actual stone, even when straining his urine. Smaller than a grain of sand, is all it takes to lay you OUT.

I would imagine it's the same for the gallbladder.

Klutzo, my LLMD said he had his out a couple of years ago, and that a day doesn't go by that he doesn't have pain. He told us to hold off. Her stones are very small. Actigall may work in her case.

Looking, wouldn't drinking apple juice every day help "soften them"? Would taking malic acid supplements be helpful?

I have had at least five cups of coffee every day since I was three. So far, no gallstones, so maybe there is something to that.

My mother had her gallbladder out in 1962, she drinks coffee like crazy and eats high fat. She's never been bothered a day for having hers removed. She's a physical wreck in every other sense, she can get hooked on cheese danishes three times a day for months. She weighs 88 pounds. She reminds me, since I weigh almost double that.

Our LLMD believes that my daughter's weight loss over the past year may have been putting a lot of fat cells through the body filter. (She gained 80lbs in three months before diagnosed. She has lost over 60 this year). We drink a good detox tea every day, she drinks hers with lemon.

She takes Theralac every day. She hasn't had soda since 5th grade, and eats VERY little sugar. Maybe a bite size Hershey to stave off the temptation.

I think it's something that was unavoidable.

Great discussion.
 
Posted by TheCrimeOfLyme (Member # 4019) on :
 
Im only going to be honest by posting this.

I had my gallbladder removed when I was 24, not sick with lyme, and had seven stones. The pain was just sickening, literally.

Im 31 now, 7 years later AND I STILL HAVE THE SAME PAIN. not to mention, I have GAINED 40 lbs.

I did liver flushes AFTER having my gallbladder removed and got stones out.

The gallbladder doesnt make the stones. The liver does. If you have stones, you will always form them, as I found out.

The only thing that gets rid of my pain is a liver flush. I have only done Hulda Clarks.

And once a day, I STILL have severe, unrelenting, straight through to my back rip-roaring pain that puts me on my knees. Its exhausting.

I'm not trying to scare you. Just being honest. There is a PLETHORA of individuals who still have the same pain after having it removed, and a plethora that doesnt. But had I known about the liver flush option before, I would have done it, unless I was at a huge risk for it rupturing.

*Thats just my personal story, what you chose is your option*
 
Posted by Looking (Member # 13600) on :
 
Kelmo, I don't see why you couldn't take malic acid supplements and it probably would be beneficial to take apple juice regularly. After all "an apple a day keeps the doctor away" [Wink] !

You can also get malic acid by taking a little apple cider vinegar in warm water to help relieve gallbladder discomfort.

Chinese medicine uses Gold Coin Grass Tincture (Lysimachia christinae) to treat gallbladder disease but I haven't tried this one.

One more thing -- drink the cloudy apple juice, it is more beneficial.

---------
Cloudy Apple Juice's Clear Advantage

In the study, published in the Journal of the Science of Food and Agriculture, researchers compared the polyphenol content of cloudy vs. clear juices made from Idared and Champion apples.

The results showed cloudy juices had up to four times the polyphenols of clear juice, and cloudy juice made from Champion apples had the highest polyphenol content.

For example, cloudy Champion apple juice had a total polyphenolic content of 1,044 milligrams per liter (mg/L) compared with 250 mg/L found in clear Idared juice.

Researcher Jan Oszmianski and colleagues at the Agricultural University of Wroclaw, Poland say the clarification process involved in creating clear apple juice may remove solids and other compounds rich in polyphenols.
-------

Looking
 
Posted by CaliforniaLyme (Member # 7136) on :
 
I had my gallbladder out during IV Rocephin 8 years ago and I have not regretted it for a second. My recovery was quick, I was glad to be able to continue with IV Rocephin- and I had no change in bowel fucntion. Some people get diarrhea from fatty foods after losiing tehir gallbladder. I had agony from the gallstones- mine were the largest the surgeon had ever seen-

Actually the whole story is awful.

I began having painful attacks (no nausea like Jen had though just AGONY) and I happened to be at the gyno for a follow-up to make sure my dermoid cyst had bnot returned- with ultrasound-

so I very pathetcially BEGGED the ultrasound person to peek at my gallbladder and she said it looked like I had HUGE stones the biggest she had ever seen adn took a photo!!!

so my PCP arranged for me to see a surgeon- MARCUS KWAN_ who reviewed my file with me there, said, "You SAY you have chronic Lyme and that does not EXIST so why should I believe THIS is real?" he contemptuously THREW the ultrasound photo on his desk and said, "I'm going to schedule you for ANOTHER ultrasound- this one CAN'T be your gallbladder- those stones would have to be HUGE- she didn't know what she was doing- she's an OB ultrasound person"

SO (I am not kidding this was humILIATING!)
I had to SCHEDULE another ultrasound but couldn't get one for 3 weeks-

gallbladder pain is way worse than childbirth-
I was already in agony but that agony waxed & waned- this was ALWAYS PRESENT about a week after that- would NOT go away- CONSTANT!!!

SO SO SO SO-

NEW ULTRASOUND_ the ultrasound tech says, "Those are the biggest stones I have EVER seen!"

(NOTE: I have aunts and 2 grandmas who had gallbladders out, it runs in the family apart form lYme!)

So he has me meet that same surgeon, I said to him, "I don't feel safe with you, I want ANOTHER surgeon." because I just did not trust him after what he did. he put me through weeks of additional pain-

so I got this guy Doc JR and he looks at the photo and goes, "We need to this right away before that bursts!"

And they did surgery 2 days later-

RIGHT when I am going under the surgeon says, 'I've got a bad feeling about this one..." (I was like, THNAKS BUDDY!)

He, that surgeon, hated groshongs, too, he kept asking if he could pull mine. He was actually pro-Lyme treatment, just anti-Groshong!!!

ANYWAY
but after it was out, no big deal, recovered quickly-
and he said they were the largest gallstones he had ever EVER seen*)!* the End*)!

(My grandmothers are in a little box- I have them- she got to keep hers!!! I get to hand it down to MY daughetrs- I asked them for mine but they said NO!!!!!!!!!!!!!!!!!!!!!_))))))))))))
 
Posted by djf2005 (Member # 11449) on :
 
there are many OTHER options other then rocephin.....

i would not lose my gallbladder knowingly to rocephin.

many other abx are just as effective for neuro lyme.

the only reason they use it the way they do is because roche (the rx co who manufav\ctured it) paid for its clinical trial. its actually i think one of only two diff abx that have been in clinical trials from big pharm for lyme spesifically. (that and bicillin)

anyway, yeah, your gallbladder is a good thing to have. if u can salvage it, i would.

work on detox, and it will help you balance back out.

good luck
 
Posted by jenschasinglyme (Member # 11193) on :
 
Hello SF CHARM,

My recovery was a little rough due to the fact I was herxing severely when the attacks came on because I was doing Hyperbaric Oxygen treatments.

I did'nt really go in the picture of health..and I had a undiagnosed staph infection.

I was very week and bedridden for about 2 weeks after and now it's been about 3 1/2 weeks and I am just tender. Other then that everything is fine.

Most people recover well from the surgery from what I have heard.

I also read you are doing quite well and made quite a recovery without the IV so you may be able to go to something else for treatment options.

For me, IV Rochephin took away bells palsy twice so I needed to continue it.

First time it happened I was given IV and my face cleared up.

Was taken off too early and the bells came back.

Put back on IV and recovered again.

Just goes to show you how very individual we all are.
 
Posted by sfcharm (Member # 9392) on :
 
Thanks all for the feedback. My goal is 9-12 months of Rocephin IV. It's made a huge difference in my lyme and it really is now just starting to kick in for me. I am now just starting my sixth month of Rocephin.

I will see my GI Dr. and make a decision shortly. I knew going into this that losing my gall bladder was a possiblity. I find it a huge price to pay to get well.

Living with lyme is not something I want to do and I would gladly sacrifice my gallbladder if that were even a possiblity. However there are no guarantees and I'll do what makes the most sense with all the information I have.

Thank you all for your stories,input, your liver/gallbladder cleanses, and just for being there.

Barb
 
Posted by map1131 (Member # 2022) on :
 
Barb, just a head's up story on Lymetoo, someone else here that ended up with a infection that she contacted in the hospital during surgery or ????? She had a rough time with her immune system being able to handle that infection.

Maybe she will post an url with her story and suggestions to help you maybe avoid an hospital infection.

Pam
 
Posted by klutzo (Member # 5701) on :
 
Keebler -
Thanks, I do eat an apple every day as well as a protein/green drink made with watered down apple juice. Malic acid did not help me.

CrimeofLyme -
My TCM doc warned me before my surgery that stones originate in the liver and could still come down and get stuck in ducts,which is why she said I must do a low fat diet.

Both the GI doc and the surgeon assured me I would be normal after surgery. I should have listened to my TCM doc.

A normal low fat diet is 60 grams per day, but the diet for this problem is only 20 grams, which is only about two teaspoons of fat all day long!

My vitamin D, krill oil, and COQ10 supps., all of which I need, contain that much fat all by themselves. A diet that low in fat has to be bad for the brain and endocrine glands, not to mention the skin.

Klutzo
 
Posted by hardynaka (Member # 8099) on :
 
Klutzo, so sorry your gall bladder removal was not the solution you were scrreaming for, while you were in pain (I remember those hard days...).

Isnt' there any other type of fat you can eat? This is waaaay too little!! [Frown]

I know a woman that's got hers removed (not lyme related) and has also problems to digest fats, but your case is extreme! Another problem for you, as though your lyme case was not bad enough...

Selma
 
Posted by klutzo (Member # 5701) on :
 
Hi Selma,
Thanks for the sympathy. I am seeing my GI doc tomorrow about this. I just had a celiac panel (negative), and an abdominal CAT scan with contrast (also negative), so we will see what he wants to do next.... I just hope it's not an ERCP, because I will turn it down. It's too dangerous for someone with apnea who can't take ABX.

I have been eating about 35 grams of fat per day, and just putting up with the resulting fat in my stool, though it's gross to have to clean the commode all the time, ugh. Even 35 grams is not much and my diet is boring. I have to make separate meals for my husband.

The strong drugs he has me on (Creon and Prilosec) have stopped most of the pain. The Creon has also eliminated my daily need for prunes and bran, if you get my drift.

I really dislike being on a PPI, because I think it's unnatural, and I already have some atrophy in my stomach, but he says I must take it for life now, and when I tried a natural alternative (Natural EsophaGuard), it was not strong enough and I got pretty sick again, with bad reflux.

To end with some unrelated good news,so you aren't too bummed..... The Physical Therapy on my torn shoulder worked, and I will not have to have surgery, thank God. I continue the exercises daily to maintain the improvement. As you may remember, the surgical team tore my rotator cuff half way through during the gallbladder removal.

Hope you are still doing well,
Klutzo
 
Posted by CatWoman (Member # 10900) on :
 
how come some doctors prescribe IV Rocephin daily and others use it 4 days a week with three days off?

RIght now I will be on it daily for another 3 weeks (I've been on it 3 so far) and after that I think I'll be doing 4 days on 3 days off.
 
Posted by canbravelyme (Member # 9785) on :
 
Throwing this into the ring:

What about routinely breaking up the gallstones until the sludging effects of the Rocephin have passed?

Here is some information I found on the procedure. According to: http://tinyurl.com/2b6wgz ,

"Shockwaves can be used to break up gallstones in a procedure called lithotripsy. However, surgery is still preferred as gallstones are likely to return if the gallbladder is not removed."

Another option:

From: www.csmc.edu/2268.html

"Endoscopic Retrograde Cholangiopancreatography (ERCP)

This procedure uses a special endoscope to diagnose the cause of jaundice, find and remove blocks in the gallbladder and bile ducts and diagnose and reach pancreatic tumors. After the patient is injected with a dye, the doctor inserts the endoscope through the mouth or a small incision. Once inside, the doctor can make a diagnosis, insert surgical instruments to remove a gallstone, widen or support a bile duct with a stent or take a sample of tissue or fluid for laboratory analysis."

Best wishes,
 
Posted by canbravelyme (Member # 9785) on :
 
Up for this very important subject.
 
Posted by Looking (Member # 13600) on :
 
If you're facing gallbladder surgery ask for a cholangiogram to make it safer:

http://depts.washington.edu/drrpt/clinicalleadership/gallbladdersurgery.htm

Avoiding Dangers of Gall Bladder Surgery
Imaging procedure (cholangiogram) can reduce risk of bile duct damage


The advent of laparoscopic surgery, which uses small instruments guided by a television camera, has made many types of surgery safer and less invasive.

In the case of gall bladder surgery, though, it has led to some unintended consequences. Surgeons could previously navigate the area around the gall bladder by feeling structures with their hands. But now, guided by a television image, surgeons can mistakenly damage the bile duct, the tube attached to the gall bladder.

"We've lost the ability to feel the structures in the abdomen," said Dr. David Flum, assistant professor of surgery at the UW. "Because of that, the risk of an injury to the bile duct is very real. It doesn't happen often, but when it does happen, it's devastating."

Gall bladder surgery, also known as cholecystectomy, is a common abdominal surgery, with about 750,000 patients in the United States having the procedure each year. Bile duct injury, one of the most common complications in that surgery, occurs in one out of every 200 procedures.

A series of studies led by Flum, a gastrointestinal surgeon and surgical outcomes researcher, indicate that bile duct injuries are difficult to fix , that the injuries can often be prevented by a simple pre-surgical imaging procedure, and that the imaging procedure is more cost-effective than treating a bile duct injury. The results were published in the Journal of the American Medical Association on April 2 and Oct. 22, 2003, and the Journal of the American College of Surgeons in March 2003.

Flum and his colleagues set out to illustrate the impact of bile duct injuries. They studied the records of more than 1.5 million Medicare patients who underwent gall bladder surgery, including the nearly 8,000 patients who suffered bile duct injuries. Nearly one-third of patients suffering a bile duct injury died within a year after the surgery. Researchers also found that repairing the injury requires a great deal of skill.

Flum's team then examined ways that bile duct injuries could be prevented. They reviewed the usefulness of a cholangiogram, an X-ray of the gall bladder and the surrounding area.

"It's like a road map," explained Flum. "A surgeon can see whether what he or she thought was the right tube was actually the right one, or if the assumption is wrong."

The researchers learned that the risk of bile duct injury dropped by half when patients had a cholangiogram before the surgery. A cholangiogram is performed only about 40 percent of the time.

The researchers noted that a cholangiogram adds about $100 to the cost of gall bladder surgery, compared to more than $87,000 for the cost of a bile duct injury and $390,000 per life saved.

"We found it's a bargain to do a cholangiogram, given the cost of repairing a bile duct injury, and the number of patients who die from the injury," Flum said.

Flum is working on a program to track the use of cholangiograms, in an effort to help doctors across the state increase the use of that and other safety interventions. As a surgical outcomes researcher, he plans to continue to look for ways to improve the quality of care in all types of common surgery.
 
Posted by Keebler (Member # 12673) on :
 
-

Wow ! Looking, that's a piece of info. we should all keep with insurance policies in case of emergency.

thanks.

-
 
Posted by sfcharm (Member # 9392) on :
 
Having a nuclear scan on Monday of my gall bladder. My GI Dr. said that the Rocephin will continue to makes stones even after the gall bladder is removed.

He is looking into some procedure which he explained to me but it went completely over my head. He is not ready to take out my gall bladder.

He mentioned going in and taking out some of the stones and sludging that's going on right now. The scan will show how the gall bladder and ducts are currently preforming.

I'm hanging in there till I have this next Monday. Right now I'm pain free just a bit nauseous.

Thanks all I'll keep you posted.

Barb
 
Posted by klutzo (Member # 5701) on :
 
looking,
I agree with your idea. I insisted that a cholangiogram be done during my surgery so that no stones would accidentally be left behind that were stuck in ducts.... I know people that happened to. I did not know it also protected against bile duct injury. Thanks for the info.

Klutzo
 
Posted by canbravelyme (Member # 9785) on :
 
Barb,

When you see your GI doc, would you consider asking him about routinely breaking up the stones with Ultrasound? Maybe this could be done after he physically removes some of them, to prevent them becoming as large.

Ultrasound is routinely used for breaking up kidney stones. This subject is so important for all of us.

Thank you for posting about this issue.

I hope you continue to be pain free in the interim.

xxooxx

Best wishes,

[ 05. December 2007, 11:16 AM: Message edited by: canbravelyme ]
 


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