Ammonia levels

I have been having extremes in my ammonia levels since last Sept. '11. I was wondering if anyone else has experienced any trouble with this blood level, how long you have been diagnosed, what your symptoms were, if you were hospitalized and for how long (if you were), and what you do to control it now.

I have had autoimmune disorders since birth, and am now in my 11th year of having a diagnosis of PSC. It took 10 years to start having any real problems! I remain strong, but am nowhere near a transplant, and most frustrated with the loss of muscle and energy that have come upon me... Yet, my inability to sleep is ridiculous! **sigh** Is there anyone out there like me?



Have you made any diet changes to address your autoimmune disorders?

HAY PANDA [love the nickname]

Do some research and talk to your doctors. I'm sure they have you on Lactulose. The main thing for you to do is detox your liver [not everyone can handle Lactulose]. Your liver can't detox itself. There are several good herbal detoxes on the market. Enemas are great REALLY GREAT [utube them-you'll learn more than you ever wanted to LOL]. YOU NEED TO POOP. Even if you are pooping, you need to poop more. You may have a mucous buildup against the walls that has caused plaque. GET THE POOP OUT. A mini trampoline is so good for getting the lymphatic system flowing.

I know everyone on here is SICK of hearing: I'm not a doctor, do your own research and ask your doctor. I JUST SAY THAT BECAUSE THERE ARE PEOPLE ON HERE THAT WOULD RATHER YOU TAKE URSO or some PHARMACEUTICAL DRUG proven to harm us than believe diet and alternatives can help some of us better and safer and not kill us [trust me, there isn't a magic pill for anything that ails us]. I get bashed for recommending the obvious.

Most of us are on LOW-FAT and high fiber. That is what our livers need. However, some of us cannot digest those veggies or salad and food gets piled up inside there that becomes undigested. Eventually, some of those chunks dump directly into the blood stream and the liver has to process it. I would DRINK my calories for 1-5 days...keep up at least 2k+ calories because your body is working so hard. Glucerna is better because it has less sugar but Ensure or Boost are fine also. I make my own healthy fortified drink.

Hang in there!!! Poop my friend. Detox the liver and have a great life. It take a little work but we're worth it.

Mona: PSC/Crohn's and loving life.

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HI Panda! I can certainly relate to your post. I had blood poisoning two years ago from eating mussels ( which I now steer clear of), and was on lactose for about 8 months afterwards. I no longer need it because I have changed my diet and started juicing, which keeps me very regular!

I avoid dairy, gluten and wheat, and juice at least one time a day with a good supply of beet root ( blood cleanser), apples, spinach, celery, lime, ginger, pears and something called mata, a root high in iron and b vitamins. All the energy I has lost has come back, and then some.

Experiment, keep a food diary, find a good naturopath, and enjoy every moment!

Love Lizzie

Ps. I also practice yoga regularly and go running, which keeps things flowing :slight_smile:

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Awesome post Panda. Thanks for sharing.

Hi Panda,

I have not gotten any info on my ammonia levels being high, I know what got me admitted to the hospital was my billirubin was high, that's when I got my diagnosis 3 weeks ago.. So I am a newbie w/ this PSC. This board is full with helpful information & you get a lot of support. One thing to keep in mind PSC symptoms some experience more than others. I can relate to exactly what you said about the loss of muscle & I lost weight.. 30lbs.. I also have the inability to sleep at night too.. I take 1/2 of 1mg of Xanax at night to relax me enough so I can sleep.

Hang in there , there are a lof of us out here like you ... you are not alone.


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Panda, I know this conversation is very old but would be interested in hearing the results on your ammonia levels and what, if anything, brought them down? My father is currently experiencing this and they’ve given him lactulose 2x/day and increased to 3x/day without it reducing levels and are now adding Rifaximin an antibiotic - too soon to tell if it’s working

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I have PBC and PSC and I have to watch my ammonia levels. I am in the liver transplant list hopefully will be soon. Watch out on the ammonia levels because it can really incapacite you. Look under YOUTUBE and you will see. Follow the advise of the past commentaries. Keep strong. God bless you.