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Amonia high - brain fog?
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Amonia high - brain fog?

Got bloodwork results yesterday that were read by my primary. He stated that the Amonia (ammonia) 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 (ammonia) 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 (ammonia) before...


Magnum
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96938_tn?1189803458
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.
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96938_tn?1189803458
Sorry, that's Plugginalong's thread
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163305_tn?1333672171
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.
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Avatar_m_tn
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?
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Avatar_dr_m_tn
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.
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92903_tn?1309908311
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 (ammonia), 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?
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Avatar_dr_m_tn
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.
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92903_tn?1309908311
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?
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Avatar_n_tn
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
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92903_tn?1309908311
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!
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Avatar_n_tn
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
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Avatar_n_tn
trade name kristalose in packets. it is cheap at wallgreens
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Avatar_dr_m_tn
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.

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Avatar_n_tn
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?
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Avatar_m_tn
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
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Avatar_m_tn
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
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Avatar_m_tn
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
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29837_tn?1314410659
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
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92903_tn?1309908311
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.

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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...
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Avatar_f_tn
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.
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Avatar_f_tn
add on to my previous post.  the cirrhosis is actually caused by the hep c that was gotten from the chemical and waste plant
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Avatar_n_tn
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.
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Avatar_n_tn
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!
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Avatar_n_tn
to all with high amonia (ammonia) 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 (ammonia) 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.
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92903_tn?1309908311
Bumping this out of the basement, too
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264121_tn?1313033056
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

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Avatar_m_tn
As long as you're cleaning out the basement, let me know if you find my old wooden Spaulding raquet. Thanks.
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264121_tn?1313033056
Thanks for the input. Apparently the primary doesn't think I need treatment at this point, or he would have said so, I think?
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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.
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264121_tn?1313033056
oh geez, lol - just realized this was an old post.
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Avatar_m_tn
Magnum posted this 10 months ago. Hopefully he has already gotten the blood work back :)
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264121_tn?1313033056
I belatedly realized that, lol
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Avatar_m_tn
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.
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264121_tn?1313033056
ROFL! Too funny.  You ended up going the 72 weeks didn't you?
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315996_tn?1321809719
Thanks for bumping this one. Heading off to Walgreens
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Avatar_m_tn
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.
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264121_tn?1313033056
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...
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Avatar_m_tn
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.
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92903_tn?1309908311
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!
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315996_tn?1321809719
I am forwarned. I will stay away from any open flames. . . . .
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264121_tn?1313033056
I think lactulose is that stuff we stick on the cat's nose when she's hacking up hairballs...

Just sayin'
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315996_tn?1321809719
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
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Avatar_n_tn
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
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Avatar_m_tn
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
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Avatar_m_tn
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.
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315996_tn?1321809719
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.
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233616_tn?1312790796
'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??
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233616_tn?1312790796
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?
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92903_tn?1309908311
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.....
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92903_tn?1309908311
http://www.food-info.net/uk/ff/prebiotics.htm
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233616_tn?1312790796
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.
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Avatar_f_tn
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
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315996_tn?1321809719
Oregon is supposed to have a shorter wait for livers. I recently saw that fact in the news. For what it's worth.
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Avatar_n_tn
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
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92903_tn?1309908311
My pleasure. I don't see how exploding farts could not be funny. They just are, like water's wet.
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233616_tn?1312790796
they don't fry roids off anymore, they tie them off with rubber bands, it's safer.
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Avatar_f_tn
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 (ammonia) 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
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Avatar_m_tn
my dad has cirohsis of the liver. He has a high amonia (ammonia) 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 (ammonia) 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...
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Avatar_m_tn
That was a good one and probally made us all laugh! thankx for that one..
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Avatar_f_tn
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.
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92903_tn?1309908311
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 (ammonia).

Good luck. I'm soory to hear of you situation.  
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92903_tn?1309908311
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.
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87972_tn?1322664839
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
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87972_tn?1322664839
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
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Avatar_m_tn
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.
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Avatar_f_tn
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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Avatar_n_tn
yes to high ammonia levels and brain fog. I am have more brain fog (I call it mind spacing) than in the past. My gastro RX'd lactulose a few months ago, I didn't take it as prescribed at first because it made me nauseaus but am doing better in taking it as requested. However, it doesn't seem to be helping my mind spacing out so much (dr. also said lactulose could help with concentration and more energy as well as helping to lower the ammonia levels. I am anxious to know where or to what this problem leads and am feeling kind of scared about it.
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Avatar_m_tn
My husband just passed away yesterday from alcohol related cirrhosis. In his case, it was the build-up of ammonia that killed him. He did not go to the doctor and was not taking lactulose. For several months he had become sleepy all the time, he lost his appetite, and seemed to think slower. In his final month, I noticed he had started walking and gesturing very slowly. To my knowledge, he was not really aware of the issue in any alarming way. I did not know what I was looking at (symptoms of cirrhosis), but I could clearly see that something was wrong.  

There is another point to be made though. I've seen several posts here that seem to put too much comfort in lactulose, particularly if the person is continuing to drink.  In addition to my husband's ammonia build-up, he had blood unable to enter the destroyed liver, which backed up into his veins. His cirrhosis went untreated until last week when one of the backed-up veins in his esophagus burst, causing him to vomit about a quart of blood, resulting in a 911 call, to the ER. They were unable to stop the bleeding with meds in the IV, and so had to do an endoscopy (camera/tool down the throat) to put bands to close the actively bleeding veins.  This procedure required him to be anesthetized.  If the procedure hadn't been done, he would have bled to death. He never woke up from that, he instead fell into a sort of deep sleep. So, cirrhosis isn't just about ammonia build-up.

Oh, there's also the major symptom of ascites - fluid build-up in the belly - which is also deadly. With ascites, the fluid is rich with proteins that are supposed to go into the bloodstream, but don't, because the liver is unable to process. This results in the blood being very, very thin, and unable to congeal (meaning when he started bleeding, they couldn't stop it. This symptom actually showed up about a year earlier in his regular doctor's bloodwork results as anemia.

In the end, all the medicine in the world isn't going to help if the liver is damaged, because liver damage is irreversible. Cirrhosis is the curse of alcoholism, unfortunately.  I just hope others get more time with their alcoholic loved ones than I did - mine was 45 years old.
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Avatar_m_tn
Longstoryshort, if your have issues with high ammonia levels, you need to take a serious, honest pause and consider _why_ your ammonia is high.  If you are a heavy drinker, you should realize that treating the symptom with lactulose - while required - will not save you.

If you are a heavy drinker and you have high ammonia levels, you likely have liver damage.  It's the liver's job to neutralize ammonia. If you keep drinking, there won't be enough good liver left to perform any sort of bypass of the cirrhosis.

If you are a heavy drinker and you start bruising easily, you likely have liver damage. The bruising is from too little protein in your bloodstream. Your thin blood doesn't clot properly.

If you are a heavy drinker and your feet and/or belly start swelling, you likely have liver damage. The proteins being rejected by your liver are pooling in the cavities of your body. The accumulating fluid puts pressure on all your other organs, including heart and kidneys.

I and my husband were living in a grand delusion - the swollen feet were from sitting in the office chair wrong, the swollen belly was just fat, the easy bruising was blamed on taking too many aspirin for the aching back.  And on and on...

Sorry for the loooong posts, but I feel the need to share the information.
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Avatar_m_tn
I am so sorry for your loss......
Thank you for your time and caring in writing here and educating all of us who read about your husband's illness and symptoms.  
I logged on tonight to read about brain fog and found a lot of good information, including what you have just written this month.....and I started reading from the beginning - in 2007!  

Being related to family members who drank too much, I am familiar with some of the things you write about.  It does make me pause and wonder if possibly the illnesses both of my family members are experiencing (different symptoms, though)  may be related to the liver problems you talk about.  I will start tomorrow with a new view and check out those things you mention.  Thank you for your help and take good care of yourself now!
Kindest regards.......

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Avatar_f_tn
I did not know that Ammonia could cause such disaster until my mom was misdiagnosed 4 times in the hospital then finally a Neurologist did some test and found out that her ammonia level was sky high. She was totally confused and did not even knew who I was, she was uncontrollable and the first thing every one suggested was to put her in a mental institution. Turns out that she had a Chronic UTI and Cardiac failure. There are no abnormalities with her liver and so no one has been able to figure out what is causing the high ammonia... she is taking lactulose, but if she ever misses a dose she goes totally confused. Today i feel really depressed, she is tired of taking the lactulose and has given up because she forgot an entire day because she missed a dose of lactulose... High ammonia is nothing to play with. Hope one day I can find a real cure for her
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233002_tn?1316031566
I am suffering quite a lot from brain fog. Lactulose did not work at all. Rifaxin has. It is quite costly, but the pharmacy I am required to use sent me many months too much once and that helps. I lived by my mind consorting with the queen of the sciences.

Hepatic encephalopathy was another insult to a brain ravaged by HEP C's  assault. I have some of the best medical help in the world, but there is nothing you can do in those moments when you are out of it. On a good day I would merely became lost when trying to think through a moderate calculation; on a bad day I would get lost getting dressed. Some daysI was a different person.

Rifaxin cannot return all that HEP C has stolen, but it has helped enormously. Consistent low 200's to 50-80. It is all the difference in the world. While still unable to do what I would like to I am no longer wandering around without a clue.

The West Haven criteria is a good way to see what may happen.

Excerpted from  http://en.wikipedia.org/wiki/Hepatic_encephalopathy

West Haven Criteria

The severity of hepatic encephalopathy is graded with the West Haven Criteria; this is based on the level of impairment of autonomy, changes in consciousness, intellectual function, behavior, and the dependence on therapy.[1][7][8]

    Grade 1 - Trivial lack of awareness; euphoria or anxiety; shortened attention span; impaired performance of addition or subtraction
    Grade 2 - Lethargy or apathy; minimal disorientation for time or place; subtle personality change; inappropriate behaviour
    Grade 3 - Somnolence to semistupor, but responsive to verbal stimuli; confusion; gross disorientation
    Grade 4 - Coma (unresponsive to verbal or noxious stimuli)

[
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Avatar_m_tn
I have hep c, cirrhosis, and a very,very low platelet count and a blood clot in my Portal vein leading to my liver. My blood screen came back with an ammonia level of 177 (60 is supposed to be the limit before brain fog starts). I have days where everything is 'pretty' good, and some where I sleep all day. No energy, and no balance. I know what it's like, HAVEN'T COME UP WITH A SOLUTION YET, BUT I BELIEVE I'M ONLY A FEW MONTHS/YEARS UNTIL I DEVELOP LIVER CANCER. TO ALL OF THOSE IN MY SITUATION, KEEP YOU HEAD UP AND KEEP READING ABOUT WAYS TO CLEANSE YOUR LIVER.
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Avatar_m_tn
I have hep c, cirrhosis, and a very,very low platelet count and a blood clot in my Portal vein leading to my liver. My blood screen came back with an ammonia level of 177 (60 is supposed to be the limit before brain fog starts). I have days where everything is 'pretty' good, and some where I sleep all day. No energy, and no balance. I know what it's like, HAVEN'T COME UP WITH A SOLUTION YET, BUT I BELIEVE I'M ONLY A FEW MONTHS/YEARS UNTIL I DEVELOP LIVER CANCER. TO ALL OF THOSE IN MY SITUATION, KEEP YOU HEAD UP AND KEEP READING ABOUT WAYS TO CLEANSE YOUR LIVER.
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