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Amonia high - brain fog?

by Magnum, Jan 04, 2007 12:00AM
Got bloodwork results yesterday that were read by my primary. He stated that the Amonia levels in my body were higher than normal. He then stated that this can effect the thinking pattern and/or clarity of the brain being able to concentrate and think normally.

I personally don't feel like I'm disabled in that capicity. Anyone else have this? Has anyone else been told by their doctor that they have high Amonia which can relate to thinking problems?
I have to say this must be related to the last volatile and near death over-dosed treatment, as I never had high Amonia before...


Magnum
Member Comments (65)

by FlGuy, Jan 04, 2007 12:00AM
To: Magnum
Always good to read your name.  Was thinking the other day how nice it would be to visit your city.  Maybe after tx when I have the requiste energy.  Don't know much, have read little, about ammonia levels.  But if you read the post in a thread started by Pluggin Away yesterday he makes reference to ammonia levels, brain scatter (great term) and lactuose.  Just a few threads down.  Take care.

by FlGuy, Jan 04, 2007 12:00AM
To: p.s.
Sorry, that's Plugginalong's thread

by orphanedhawk, Jan 04, 2007 12:00AM
I had high ammonia levels from cirrhosis. It does make your brian foggy. The thing is, its all so insidious, it happens slowly. So I didn't know how out of it I was until I started taking lactulose to reduce the ammonia. And then, surprise, I stopped taking naps, my brain was working better. Don't deny yourself the possibility of feeling better.

by Kalio1, Jan 04, 2007 12:00AM
To: magnum
Increased ammonia levels are related to liver damage not the treatment drugs. Did your doctor say what the levels were? Did he put you on meds for it? Are you seeing a Heptologist?

by Hepatitis Researcher, Jan 04, 2007 12:00AM
Elevated ammonia levels in the setting of cirrhosis are the result of the reduced capacity of the liver to convert the ammonia produced by the intestinal bacteria from protein remnants in the food to urea, which is non toxic to our metabolism and can be excreted effciently in the kidneys. Ammonia  ( and some other ill defined toxic byproducts of intestinal bacteria metabolism) is particular toxic to the brain and can cause , at first, mild subclinical encephalopathy as is often seen even in compensated cirrhosis using sensitive psychometric testing. At higher levels it can cause acute hepatic encephalopathy, which is one of the deadly acute complications of cirrhosis. It is treated with high dose lactulose, which has the effect to reduce the number of ammonia producing intenstinal flora in favor of lactulose ( a non absorbable harmless, nontoxic sugar, available OTC in Canada and Europe for laxative purposes) utilizing bacteria, that are harmless and do not produce ammonia. This is a life saving treatment. There is little reason not to use lactulose as a preventative probiotic treatment for anyone with liver problems.

by GoofyDad, Jan 05, 2007 12:00AM
To: interesting stuff - HR
HR, it sounds to me like your comments are once again spot on. I have 'early cirrhosis' and I've noticed that I'm rarely running on all mental cylinders. Not bad, but not great. Like a missfiring Volkswagan when I'm used to functioning like a smoke belching Rambler...

I have a brand new shiny lactulose script waiting to be picked up at Long's.

My Doc and I discussed the issue and settled on trying this just to see what will happen. We talked about the sensitive tests required for minimal encephalopathy and how individuals who's professions or lifestyles require more concentration might sense the problem earlier. I haven't figured out how the tests would work without a baseline....seems to me mental function is relative, no?

He didn't offer to test amonia, which strikes me as odd.

As far as the downside, the Doc was reluctant due to the potential disruption to the bowels. He says theraputic benefit woun't be realized until I titrate up in dose to reach 2 movements a day. I wished we had started dooner - it would have provided me something to talk about at the holiday parties. Fire in the hole......

Seriously though, he leaves it to me to decide how much I want to take and I think I'll lean to the low side so as not to have too many pooper problems. I wonder whether I can benefit without being tethered too closely to the can?

by Hepatitis Researcher, Jan 05, 2007 12:00AM
To: goofy
Dont be afraid of the lactulose.Its harmless, quite incredible how much good it can do with being so totally nontoxic. Just titer it in, you will find "your" dose.

by GoofyDad, Jan 05, 2007 12:00AM
To: HR
Thanks! So it sounds like I can get some benefit (and maybe even improved mental clarity) from a dose that won't have me plotting out gas stations with no-pay toilets?

by beamishboy, Jan 05, 2007 12:00AM
To: goofYdad
i guess it all 'DEPENDS' on how badly you want the mental clarity...leastwise your choice of reading material while attending the porcelin throne may well titer up.just imagine,you could start reading the newyorker instead of marvel comics or counting the tiles....GOODLUCK & keep us posted on improvemnts,please

by GoofyDad, Jan 05, 2007 12:00AM
To: Beamie One
Wow what excellent points! So the theraputic benefits of the lactulose may be more a function of the reading material you keep by the commode as you poop your way to higher conciousness? You have shined a light(beam) where the light rarely shines, my friend!

by pluggialong, Jan 05, 2007 12:00AM
i found out about that nasty thing called ammonia when iwas answering questions in a deposition and all my answers were strange. after bloodwork, i found my level to be120. did some new med for 3 wks and it had gone up to 200. got on lactulose and it dropped to 120 in 2wks. it is in powder form to mix with water and does not taste bad at all. my dr took me off of it but said if i am confused again to start it up. encephalopathy is a new twist in my issues. i am basically stage 4 decompensating and have had 2 bandings in last 3 yrs. i was diagnosed in 1999 after routine bloodwork for minor surgery

by pluggialong, Jan 05, 2007 12:00AM
trade name kristalose in packets. it is cheap at wallgreens

by Hepatitis Researcher, Jan 05, 2007 12:00AM
If you take lactulose prophylactically, then the ammonia producing bacteria will be kept at a low level and the lactulose dose to achieve this will be low, with no unpleasant degree of diarrhea. If a patient has already toxic CNS symptoms, the presribed dose of course will be high and diarrhea will be intense. Again, hepatic encephalopathy can be life threatening and then even lactulose enemas are given to save the patient.

Because of this almost miraculous effect of lactulose, it seemingly is respectfully considered a "drug" here - and by some doctors-, something to be reserved for severely ill patients.

In reality it is a harmless sugar, simply fostering a nontoxic enteric flora that lives on lactulose that we cannot absorb, reducing not just ammonia but also LPS and endotoxins reaching the liver from the gut, reducing hepatic and overall inflammation, having antifibrotic effects for that reason and preventing "bacterial translocation" that is the transport of bacteria from the gut lumen through "leaks' in the guts epithelial lining into the intstinal tissue towards local lymphnodes and the liver. It preserves the integrity of the intestinal mucosa, which further reduces the antigen induced stress on the liver, calming the Kupfer cells, which are sitting there to catch these foreign intrusions that all hit the liver first.

It is therefore, together with some probiotic bacteria, part of any reasonable  probiotic/eubiotic treatment plan of the intestinal flora, with great importance to anyone with liver disease and and eye towards reducing hepatic and systemic inflammation, fibrosis progression /regression.

It is something that, in low dose, even a "healthy" person should consider as part of his/her lifestyle.

Here is a study to determine its "toxicity":

Lactulose has profound health benefits by way of increasing bifidobacterial flora in the intestine of infants thereby protecting them against enteric infection, constipation and systemic encephalopathy. In the present study to assess the sub chronic toxicity of lactulose syrup, the rats were fed on a basal feed supplemented with lactulose syrup at 0.5, 1.0, 2.0 and 5.0% for a period of 21 weeks. Monitoring of food consumption, gain in body weight and physical observations did not reveal any treatment-related toxicity in any of the group of rats. Terminal autopsy also did not reveal any signs of toxicity. Further, no significant alterations in relative organ weight, serum biochemistry and urinalysis were observed up to 1% lactulose supplementation level. The results suggest that supplementation of lactulose in the diet does not produce any toxicity at the doses tested.

by pluggialong, Jan 05, 2007 12:00AM
my doc told me the same thing about "range levels" they are different  for everyone. alcoholics can die in the 100 range .i was over 200 and other than confusion and spaciness, functioned fine. I agree about the lactulose. i did have looser stools, not diarhea (diarrhea) but figured out when to take it based on bathroom access at work.I took in mid eves and was fine all day. I am pretty physical at work and was going 3x a day. my wife has a coworker, whose dad went wild at work, tried to beat up his boss, left after work, tried to run him over and went into a coma. he had had a tplant before this, but is better now.weird huh?

by jmjm530, Jan 05, 2007 12:00AM
To: HR
Based on my SVR and a fairly recent Fibroscan, not overly concerned with cirrhosis -- however, for the past 9 months I have had quite noticeable post treatment 'bloating' in the abdominal area that was unremarkable on ultraound. The bloating, combined with more frequent bowel movements  with sometimes more than usual urgency t, leads  me to believe some sort of gastric inflammation, IBS, etc.

First, does this make any sense to you in terms of treatment and
do you think lactulose might be beneficial in terms of my bloating? And second, any other suggestions/comments on the bloating, including additonal tests, next steps, etc.

I did mention it to my hep doctor but have not pursued it agressively partly due to the symptons not being severe, and partly being tired of doctors, procedures and medications :) He did ask me if I had been under stress lately -- probably guessing IBS -- and we left it at that. As to stress, nothing conscious, but I have likened  many of the symptons myself and others have experienced post treatment to post traumatic stress syndrome, so in that light, I probably am under a certain level of stress coming out of a very traumatic 54 month experience.

Thanks in advance for any insights.

-- Jim

by jmjm530, Jan 05, 2007 12:00AM
To: HR
Forgot to mention that I was thinking of seeing a doctor of TCM both for the bloating and post tx skin issues. I imagine their rx would be herbs and acupuncture. Your comments welcome on this.

-- Jim

by Better_Angels, Jan 05, 2007 12:00AM
To: Magnum/Goofy Dad
Hi Guys,

My husband's ammonia elevated to a point where he was experiencing blackouts, but in the beginning it presented as confusion and disorientation. The blackouts are what ultimately led to the HCV diagnosis. He was put on lactulose and it did wonders, rather quickly. He hated the stuff, and due to improved liver histology he no longer needs to take it, but without it, things could have gone from "worst" to worser...

Magnum, one of our doctors told us the number is irrelevant, it's how you feel and not to get too hung up on what's "in range" and what isn't.

Good luck,
Debbe

by Magnum, Jan 06, 2007 12:00AM
Thanks for the input. Apparently the primary doesn't think I need treatment at this point, or he would have said so, I think?

I will have to find out the norm and then what mine is considered as high, or higher...

Thanks,

Magnum

by GoofyDad, Jan 06, 2007 12:00AM
To: OMG - ya gotta read this!
Although not reported for lactulose, theoretical hazard exists for patients being treated with lactulose who may undergo electrocautery procedures during proctoscopy or colonoscopy. Accumulation of hydrogen gas in presence of electrical spark may result in explosion. Therefore patients should have thorough bowel cleansing with nonfermentable solution before undergoing such procedures.

<hr>
HR: Thanks a million for all this valuable info.

<hr>
Jim: If you have bloating, it sure sounds like the lactolose should take care of the problem. One way or another. Don't know why I think you might have a heated toilet seat, but if you do, please have the wiring checked by a qualified professional...

by janey1015, Jul 18, 2007 01:42PM
are any of you on a transplant list?  my husband has cirrhosis end stage from working in a chemical plant and we are told he is too far for a transplant?   Is this a true possibiltiy.  His platelet count is 40,000 and white count is 2 x whatever the mean is that you times it by.

by janey1015, Jul 18, 2007 01:44PM
add on to my previous post.  the cirrhosis is actually caused by the hep c that was gotten from the chemical and waste plant

by Gigi1913, Jul 21, 2007 03:45PM
To: HR
Do you think it would be wise for folks to take lactulose as a preventative measure?  Does this ammonia problem occur with HepB?  Can lactose intolerant people take it?  Is it available in the US?  

BTW-
I am so greatful to have found this forum.  I was diagnosed with chronic HepB one year ago nd the doctor I saw- which was a gastro, but NOT an Hep B specialist told me i could continue to drink socially because of my low viral load and normal function tests.  I switched insurance and had to switch doctors and found a tru specialist this year. The new doctor is a godsend! She says I likely contracted at birth or in childhood since I was born in a country with a high HepB infection rate.  I am 30 and a former social "binge" drinker- on weekends I would get wasted with my friends!  I stopped binging about a year ago, but continued to have a drink or two on a weekly basis.  I work in a profession where I attend evens and fundraisers every week and drinking is a big part of my social/p
proffesional culture.  But I am committed to stop completly.

My new doctor immediately had me do a liver ultrasound, and I was found to have  "fatty liver".  SHe then had me  undergo a biopsy just in case i needed drug therapy.  The biopsy showed that there is some inflamation (inflammation) but no scarring.  So even though my viral load is at around 5K copies, she beleives my viral load fluctuates.

She prescribes Baraclude- with I will pay $250 co-pay for a 3 month supply!  

Is there any likelihood that the drug will iradicate the HepB?  I've heard that is possble.

by new-sojourn, Jul 21, 2007 09:58PM
To: that old brain thang!
You can control those 'little bacteria thangs' thru dietary measures to some point.

Red meat and dairy products create ammonia in the gut--as do certain veggies, grains, fats,  vit/minerals etc.

That ammonia build up and following hepatic encephalopathy is no joke and for the patient --you can't tell.

I have to depend on others to notice my gradual withdrawal, lack of fine detail attention and 'forgetfulness' and emotional swings.

the best prevention, before medical intervention , is diet and exercise and emotional well being.

I personally think encephalopathy is one of the most serious sx's of hep c, and undetected and un-dx'd, the most destructive--in terms of family, jobs, friends and personal happiness/spiritual peace.


And thanks for a usa name-kristalose-and source-walgreens-for the lac- that works absolute wonders.

I go to Amsterdam-for the art and flowers and hash-every year and end up 'smuggling' lac back!!

As w/ so many things, you can treat, eat and walk--all w/the purpose of reducing toxins and liver distress=w/o lotsa $$'s and some common sense!

by LILLYPOOH, Aug 10, 2007 07:47AM
To: EVERYONE WHO CAN READ THIS
to all with high amonia levels please eat right and take lactolouse make sure youu are getting your cholestoral checked .My dad just had a massive heart attack his amonia was 210 each organ attempted to shut down 1 by1 he lost his mind for 24 hours thank god he is still alive.Any swelling in the lower extrimidies go to seek help asap and if they find nothing MAKE SURE YOU GET YOUR CHOLESTORAL CHECKED BEFORE YOU LEAVE THE STRESS TEST THAT THEY WILL GIVE YOU CAN AND WILL LIE. GOD BLESS EACH OF YOU AND YOUR FAMILIES....AND IF YOUR LIVER IS BAD AND YOU WANT TO LIVE STOP STOP SMOKING DIPPING ETC.THIS IS REAL I AM 34 YEARS OLD AND ALMOST LOST MY DADDY LOVE YOURSELF AND YOURSELF WILL LOVE YOU. LILLY POOH.

by GoofyDad, Nov 11, 2007 09:23PM
Bumping this out of the basement, too

by alagirl, Nov 11, 2007 10:41PM
To: Magnum
In end stage liver disease the brain has more difficulty processing ammonia which leads to a build up of glutamine in the brain and swollen astrocytes.  There seems to be kind of a syndrome or grouping of symptoms that leads to Hyperammonemic Encepalopathy as ammonia levels rise.  Excess pressure on the brain does cause issues with the ability to think and can cause behavioral changes.  There has been some research to suggest that a chemical called methionine sulfoximine may be helpful.  Article --> http://www.sciencedaily.com/releases/2002/05/020514072126.htm

lactulose is also prescribed --> http://www.merck.com/mmhe/sec10/ch135/ch135f.html    

Here's an article on dietary recommendations for those with high ammonia and liver disease

--> http://www.liverdisease.com/protein_hepatitis.html

by jmjm530, Nov 11, 2007 10:48PM
To: Goofy
As long as you're cleaning out the basement, let me know if you find my old wooden Spaulding raquet. Thanks.

by alagirl, Nov 11, 2007 10:50PM
To: Magnum
Thanks for the input. Apparently the primary doesn't think I need treatment at this point, or he would have said so, I think?
--------------------------------------------------------------------------------
ok. Can you go back to your doc and get your exact bloodwork and post it for us maybe?  Are you HCV positive and if so can you post those stats, viral load genotype etc for us too, and also post your ammonia levels and other bloodwork?

I am a little concerned that you aren't sure where your doctor is with your treatment plan or prognosis because typically when you have high ammonia levels you are looking at a more advanced stage of liver damage where the liver is no longer able to process toxins appropriately,  And if your doctor is telling you that the ammonia levels are high enough to, in his opinion, potentially alter your cognitive abilities, then this is concerning to me and I think you need to get a clear picture of exactly where you are in terms of liver damage and treatment plan so that you can make some good decisions about how to proceed.

by alagirl, Nov 11, 2007 10:52PM
oh geez, lol - just realized this was an old post.

by jmjm530, Nov 11, 2007 10:52PM
To: ala
Magnum posted this 10 months ago. Hopefully he has already gotten the blood work back :)

by alagirl, Nov 11, 2007 10:54PM
I belatedly realized that, lol

by jmjm530, Nov 11, 2007 10:57PM
To: ala
As long as you're giving advice to questions of the past, here's a post of mine from from my first month of tx in '05. What's your advice :)

."..At some point I'll have to decide on how long to continue treatment. Advice has been from 42 weeks (based on my EVR) up to two years based on my age, fibrosis level, etc. I've been leaning toward splitting the difference at 72-weeks, what do you think? Of course, a big part of my decision will be how I'm feeling as I approach the 42-week mark. LOL.

by alagirl, Nov 11, 2007 11:00PM
ROFL! Too funny.  You ended up going the 72 weeks didn't you?

by scratchinghead, Nov 11, 2007 11:10PM
To: GoofyDad
Thanks for bumping this one. Heading off to Walgreens

by jmjm530, Nov 11, 2007 11:13PM
To: ala
54 weeks total. 48 weeks plus 6 where "6" was the week I became UND. I decided the fellow who suggested 2 years was way off the beaten path.
____________________________________________________----
Here's an old Procrit thread in your honor. This was my second month of tx and I was already fiddling with the dose:

jmjm530: Where does one go about finding a sterile vile and does that mean that the vile contains preservatives?

I wanted to do the same thing (split the dose) with my Procrit. It now comes in single-use 40,000 unit vials. The pharmacist said that there was no preservative in those vials so did not recommend leaving the Procrit in the vial once the seal was broken.

However, he unofficially advised I could probably get away with splitting the dose into two syringes and then storing the second syringe in the refrigerator for up to 14 days.

Procrit is offered in a multi-use vial (with preservative) but only in very low doses. But I believe that even with the multi-use sterile vile, all the doses must be used within 14 days.

You posed a good question. Why throw these valuable drugs away if you don't need to.

by alagirl, Nov 11, 2007 11:39PM
To: Jim
What, in essence, is the difference between the multi-use vial and the regular 40,000 unit vial?  I mean, the 40,000 unit vial after you take the red top off still has that grey rubber stopper in it...

by jmjm530, Nov 11, 2007 11:41PM
You are talking to Jm of Xmas past then :) The multi-use vial has preservative, i.e. "mutli use". The 40,000 unit vial has no preservative, therefore recc to use right after seal is broken.

by GoofyDad, Nov 12, 2007 01:23AM
To: scratching stuff
Be forewarned - the stuff ferments up some potent farts in the begining. After a month or so of regular lactulose they seem to settle down - but I still take it right after work to give it plenty of time before I'm confined to my office the next day. When I first started on it I was unaware and was taking it in the morning. Then I'd hold meetings in February with my window wide open.....LOL. I don't know how to describe it, but they have their own unique bouquet....... yowza!

by scratchinghead, Nov 12, 2007 11:14AM
To: GoofyDad
I am forwarned. I will stay away from any open flames. . . . .

by alagirl, Nov 12, 2007 11:43AM
I think lactulose is that stuff we stick on the cat's nose when she's hacking up hairballs...

Just sayin'

by scratchinghead, Nov 17, 2007 07:44PM
To: alagirl
we used to put vaseline on the cat's front paws. It would lick it off and that would rid the cat of hairballs. seriously

by Old_Broad, Nov 18, 2007 09:45PM
To: all
Glad to be reading this stuff. I did per intron 42 wks & pegasus 70 wks & not cured. Went thru the procrit. It stings. Hated it. Am starting to bloat & have a hard time in the bathroom from timt to time. I am going to Walgreens & get this kris stuff as a precaution. Sometimes I feel like I'm not wired right. My husband says I'm goofy at times.   Thanks

by viaduk, Nov 18, 2007 10:36PM
To: scratchinghead
we used to put vaseline on the cat's front paws. It would lick it off and that would rid the cat of hairballs. seriously
___________________________________________________________________________________

We used to do the same thing.  Worked great

by viaduk, Nov 18, 2007 10:39PM
To: old broad
Before you waste a trip to walgreen, you should know that kristalose is a prescription medicine and you'll need a script from your doc.

by scratchinghead, Nov 18, 2007 11:00PM
To: viaduk
Yeah, I went to Walgreens and they couldn't find in until the manager looked on this computer and came out and told me it needed a perscription.

by merryBe, Nov 18, 2007 11:06PM
To: all
'suse me for tripping on hairballs in my half a cyanide cocktail (ammonium) moments but did the question of what if anything this does to blood sugar levels ever get addressed?

would the addition of acidophulus make sense in terms of promotioning good bacterium be a good adjunct or even secondary course for those with gastric considerations??

by merryBe, Nov 19, 2007 12:48AM
To: all and HR
Re: acidophulus and lactulose, would it better to do both regimes in order to keep the lactulose dosage lower knowing that unless ones bowel's are sluggish one might inadvertently begin to malnourish with daily laxative? which wouldn't be optimal either.

just suggesting maybe a balanced approach might be more judicious, not that lowering ammonia is not a good thing...just is there more than one way to skin that hairball??????
anybody?

by GoofyDad, Nov 19, 2007 01:25AM
Merry - I take lactulose and a probiotic with acidophulus. You might google 'prebiotic' -- there may be another compound that works for you in place of the lactulose....

scratching - wise move on the open flames: http://www.drugs.com/ppa/lactulose.html -- apparently there's actually a risk of blowing up the patient when cauterizing 'rhoids -- the mental image makes me chuckle every time...   black smoke leaching from the torched bung, fecal material splatted everywhere, doc with a soot-stained, singed surgical mask.....

by GoofyDad, Nov 19, 2007 01:30AM
To: merry
http://www.food-info.net/uk/ff/prebiotics.htm

by merryBe, Nov 19, 2007 02:28AM
To: all
ahh the joy of it all....everybody else is planning their holiday meals and here we all are decribing the blue flaming meanies,,,,,,which after t-day we'll skip the yardstick and grab the Stanley 16 ft-er to measure trajectories......rolleyes

is a prob-biotic more fun than a preb-boitic??   (jk)

Goofydad....you've changed forever my image of a surgical masked doctor,,,,,saying  "smokin"...
you did jim carey proud.

by cat33, Nov 19, 2007 02:33AM
To: GoofyDad
Just checked out on ammonia level . To find a totally GoofyDad. You really are Goofy. Well I went for a colonoscopy while taking lactulose and fortunate or unfortunately did'nt blow the Dr. away. Lactulose is a prescribed drug. I've been taking it for about a year now and still haven't figured out the right dosage for me. Believe me there are times when your traveling  or have an appointment and you just can't take it. If you go to long without it a  You get as everyone say BRAIN FOG never knew what that ment till now.The Dr. have their own word for it encepalopathy. Luckly the Dr. said I could'nt overdose on it so there are occations when I try to compensate and end up sitting in the thinking chair for a very long time.I try to take a higher dose in the evening so I don't spend the entire day in the bathroom. And of course they did say you could go into a coma if your not careful. Someone also asked about transplant I'm not on the list yet but have gone for an eveluation. Looks like I'm still going to be at the bottom of the list because I have no significant symptoms MELD score is at 10 and should be much higher in order to go up on the list . I am according to biopsy at end stage. So whom ever asked Your husband needs to get an eveluation at a liver transplant center before they tell him he can not get a transplant.  Goofydad you made my day . Made me smile for awhile and these days its rare. Thanks!!!!!!!!!!!!!!!!!!!  cat33

by scratchinghead, Nov 19, 2007 10:11AM
To: cat33
Oregon is supposed to have a shorter wait for livers. I recently saw that fact in the news. For what it's worth.

by CrazyTrain, Nov 19, 2007 12:41PM
To: All
To all those that think high ammonia levels cause "brain fog" I've got just one thing to say..... Dang,  I forget now what I was going to say :)

LOL - Keep the faith

by GoofyDad, Nov 20, 2007 12:20AM
To: cat33
My pleasure. I don't see how exploding farts could not be funny. They just are, like water's wet.

by merryBe, Nov 21, 2007 02:50AM
To: scatchinghead
they don't fry roids off anymore, they tie them off with rubber bands, it's safer.

by La741, Feb 07, 2008 09:15PM
To: GoofyDad
I am Certified Lymphedema Therapist with a patient who has cogenital Severe lower extremity lymphedema.  She recently over the past few months has been having these "brain fogs" and went into a hepatic encephalopathy coma state.  She came out of it.  The physician wanted treatment to restart, now her amonia levels are climbing.  Through Manual Lymphatic Drainage treatment and moving of the lower extremity lymph flow upwards; is this I am assuming adding to her ammonia problems??  I have stopped treatment and on the web researching.  Thanks for any advise.   Lori

by dianee, Oct 11, 2008 08:20AM
To: high amonia levels
my dad has cirohsis of the liver. He has a high amonia level so the doc gave him lactose. First it was 4 a day and then dad cut it down to 2 a day after about 2 weeks due to going to the potty too much. The blood test was just done again and his level is not down. He has probally been taking the lactose for a month now. The doc called and told mom the level was still high and to take three doses a day of the lactose. My dad says it makes his stomach hurt and wont increase his dose. He takes 100 mg a day of diuretics, and one other that is for his stomach holding fluids. He is 78 and just sits in his chair now and wont do  anything much at all. So far he seems pretty clear headed but, if he doesn't increase his lactose dose do you think the amonia will just never go down at all? He is stubborn but, I would like to know the bare facts. He sees a stomach doc that is also a liver doc. Should he be seeing a different kind of specialist?  Thanks for your time and consideration...

by dianee, Oct 13, 2008 02:34AM
To: crazytrain
That was a good one and probally made us all laugh! thankx for that one..

by DesparateMom939, Sep 02, 2009 10:27PM
To: GoofyDad
i have a 43 year old daughter with ending stage of liver disease.  she has hep c.
she has brain fog and high ammonia level, and after months of agony will not take lactulose again!  she gets severe gas pain and can't pass it.  she is literally rolling in pain and crying.
i have to agree that her life with lactulose is hardly worth living.  i don't know why this terrible pain, but her dr says take more!
i don't know what to do anymore.  can't get on transplant list yet.  her dr is unconcerned.  we live in the back woods.  no specialists around.  her pac told me she won't care for her unless she gets psychiatric help?  
i want my daughter to live, but not in extreme pain.
is anyone else having a prob with lactulose and is there an alternative drug?
please.

by GoofyDad, Sep 02, 2009 10:42PM
To: Desperado
There a prebiotic called inulin that may have a similar effect - you can buy that over the counter. But I would not be the one to advise you to go against the doctors orders - and I don't think it's as powerful as lactulose. You might try smaller doses of lactulose and work up.  

There's a drug currenty in trials - I heard it's approved in Japan. You could maybe participate in a trial, but not if your in the backwoods.  http://www.oceratherapeutics.com/content/pipeline/ast120.htm

Also, limiting protien intake can reduce amonia.

Good luck. I'm soory to hear of you situation.  

by GoofyDad, Sep 02, 2009 10:46PM
To: Desperado II
I just read up above and see people have been asking my advice. I need to tell you I'm just a guy with a wonky liver who takes lactulose once in a while and pokes fun at the GI problems it generates. I know a lot more about farting than doctoring, if you get my drift.

by Bill1954, Sep 02, 2009 10:49PM
To: DesparateMom939
I believe there are a number of options that are available for managing encephalopathy; ask her doctor about rifaximin as well as spirolactolone (sp?). There are also antibiotics that can be used too. So sorry to hear about your daughter’s troubles; do you know why she hasn’t been evaluated for transplant yet?

Bill

by Bill1954, Sep 02, 2009 10:52PM
To: DesparateMom939
Here is some info about management of hepatic encephalopathy, including a little bit on intolerance of Lactolose:

“There are also concerns regarding the cost-effectiveness of the medication. At the author's institution, one day's treatment with lactulose (30 g PO qid) costs $2.20; one day's treatment with rifaximin (400 mg PO tid) costs $18.42. However, the differential in cost of medication might be overcome if it was determined that rifaximin decreased the incidence of significant medication-related adverse effects (eg, severe abdominal cramping) or reduced hospital stay.”

http://emedicine.medscape.com/article/186101-overview

Bill

by franke566, Sep 03, 2009 08:00AM
To: Magnum
I hope I spell this right MENTAL ENCEPHALAPATHY is a waking coma and can be caused by high ammonia levels.  I had this more than once and Lactulose (enulose is the generic name) brought me right out of it.  I have to take this syrup daily.  I have no memory of the event but last Easter with my wife and children, grandchildren, I ate an easter egg-shell and all  They rushed me to the emergency room because of this and the fact they would ask me a question and I would just say What-over and over again.
I had just finished a high protein breakfast-eggs, sausage, bacon and went into this strange coma.

by DesparateMom939, Sep 09, 2009 11:29PM
To: Magnum
my daughter did not have such a quick recovery from lactulose.  it has been 10 months and she has improved somewhat, but rolling in excruciating pain each time i give it to her.
thank you for your comments.  i truly wish you well, and my heart goes out to you and family.
i think she needs a new specialist, and fast.  
to all who have sent me some help, i am so greatful.
i am having a difficult time getting to know my way around this site; but i am learning.
i don't seem to be able yet to respond to those people listed in my emails?  but i will get it.  so little time lately.
God bless you all.
working on new doctor.....this girl needs some tests!
on it Again tomorrow am.

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