11-02-2012, 08:04 AM
Junior Member (male)
Join Date: Oct 2008
Location: Melbourne, Victoria, Australia
Mystery liver disease, need help.
Hey all. I'm 34, male and have been in & out of hospital for the last year with severe illness. I have had CFS/FM for 12 years (Chronic fatigue syndrome and fibromyalgia).
IMO it ALL stems from an unknown, strange liver problem no one has ever figured out. I have been, since the start of CFS etc, severely intolerant to meds, allergic to many things, intolerant to many foods - worst fats and meats.
Back when it started in 2000 I was 22, and had lots of gallbladder attacks, had it removed etc, eps of pancreatitis and gastroparesis. The CFS/FM & chemical sensitivities only started when the GB/liver eps started. I suddenly was severely intolerant to coffee and paracetamol (tylenol). With the GB/liver pain came pale stools etc. Liver enzymes etc were never off though so I was labelled with somatization disorder despite them seeing liver sludge and having pale yellow and pure clay white stools.
Really long story short, I've had these problems 12 years, always been underweight and no energy etc, with concurrent huge digestive issues. Adrenal insufficiency came on in 2008 and put on hydrocortisone. Life almost ended ever since. Been housebound ever since as HC really knocked my sensitive body around.
Now for the last year things have been worse than ever. Worst digestion ever, cannot break down protein (makes me incredibly ill). When i eat meat/fish/eggs my brain feels like a toxic waste dump and I can barely move my limbs - I feel paralyzed almost for about 12 hours. I can only tolerate things like plain rice and veg. Am so underweight now from it - heaps of muscle wasting on arms and legs. I have such extremely low energy I can barely tolerate a 5 minute car trip without feeling unstable. Extremely pale yellow constipation.
Despite this my liver tests have still been normal, though it's been hurting terribly day and night for most of the last year. I was in hospital again for almost a month in August, and they found *nothing* new and said it must just be my Chronic Fatigue Syndrome getting worse.
Finally in October my new GP ran alot of tests and all my IG's and proteins were elevated, as was lipase and ALK PHOS. I feel like my body is choking inside especially in the liver area and I wake up shaking with palpitations every night, feeling like my internals are suffocating. Most days I'm SO out of it and can hardly get off the bed. feels like my organs are just choked up and not getting blood/oxygen through them.
Im so upset that the medical system has been ignoring my pleas that my liver is so stuck and jammed up and in pain, just because the bloods have been normal - until now. I have been hanging onto my life by a thread this last year, and I desparately want it back! I dont know what to do. My body is only just hanging in there and hospitals just keep sending me home. To me without somehow figuring out this liver issue I may not have too long.
I live on elemental amino acid drinks and very plain low fat vegie foods because anything normal - even steamed fish, my liver groans and body is in worse systemic pain than ever (which it is no matter what unless I eat NOTHING but water!).
I know no one will have *the* answer for me, no one in the world does. However any suggestions would be appreciated. Please don't just say "you need to see your Dr" - I've just been in hospital a couple months ago under my 10 year gastroenterologist for lots of tests - they sent me home. Only in October did my GP find elevated liver tests - finally.
Also I've been on brown rice, veg and vegie juices, not drank alcohol since I was 21, only have a very rare junk food treat which I pay for, etc. I take a few supps as I had to give them all up, most natural supps make me feel worse than better - liver cant process them. I take cortisone as I have to - dead without it due to adrenal insufficiency. 1/4 to half valium per night - dependant on that too unfortunately.
I need help so badly, I really want to live and only just hanging in here. Have a beautiful girl and love my brother and friends. Just want a chance at life and hope someone out there can help me before its far too late (which it feels like it already is).
Thanks & much love.. Chris. <3
Last edited by moderator2; 11-02-2012 at 08:26 AM.
Reason: posted disallowed website
11-02-2012, 07:59 PM
Join Date: Aug 2011
Re: Mystery liver disease, need help.
OK Chris, I'm NOT a doctor but I do have some thoughts about your case...
Everybody knows alcohol can hurt your liver, but many don't realize the gastrointestinal tract can and often does contain bacteria which give off "endotoxins" that can stress your liver just as bad as alcohol can.
Gut bacteria is supposed to be mostly "gram positive", though small amounts of "gram negative" bacteria is normal too. Most antibiotics kill off only the good gram positive bacteria which can cause overgrowth of bad gram negative bacteria. If you had been on antibiotics frequently before you became ill, this might be a clue this could have started your troubles. Fad diets and/or eating disorders can cause this too.
The wall of your intestines is supposed to keep most of the toxic endotoxins given off by gram negative bacteria inside the intestine, but some leakage always occurs. In some people, poor health can cause the intestinal wall to become even more leaky in a condition known as "leaky gut syndrome".
If you've got a bad imbalance of bacteria in your gut, and your gut wall is leaky, this double whammy can make you very ill indeed. A "stool culture" may indicate what kind of bacteria you've got in your gut, and perhaps how to fix it. Doctors sometimes try gram negative antibiotics, but this is a risky business. Some get better while some report even more antibiotics just makes them worse.
You may have heard of (and tried) probiotics, and if you haven't this is a good place to start, but seeding the gut with good bacteria can be difficult once bad bugs are in control. There are also supplements known as "prebiotics" which are like a food for the good bugs, and perhaps prebiotics or a combination of both may be more effective.
Regarding your protein/fat intolerance... Bile is what helps your body digest these and a lack of bile will cause your symptoms. Your liver needs a nutrient called "choline" to generate lecithin which is a key component of bile, and meat and the very foods you are sensitive too are normally your best source of choline.
If you cant eat meat, eggs have more lecithin/choline than any other food you might eat, so if you can eat eggs, or even egg yokes, this might improve your symptoms. Lecithin is also available in supplement form if you'd prefer to try this.
It takes large amounts of bile to digest protein and fat, and this is what your gallbladder provides. It stores bile and then dumps large amounts of bile into your intestine with high fat/protein meals. With your gallbladder gone, you can't get this big blast of bile with fatty meals, but if you can increase bile flow, this WILL help.
TALK TO YOUR DOCTORS before you try any supplements! Probiotics, prebiotics and lecithin are all pretty benign supplements, and your doctor may not get too excited about them, but ask them if it would hurt to try them before you do.
Google around on: Leaky Gut Syndrome, Endotoxin and endotoxemia (human), probiotics, prebiotics, choline deficiency, lecithin, and look into candida overgrowth & gut dysbiosis too.
I know it's frustrating when you are sick for so long and doctors can't seem to help. I had chemical sensitivities for quite a while too and know all too well how hopeless things can get. I think a concentrated polyunsaturated form of lecithin known as "polyenylphosphatidylcholine" or PPC is what helped me more than anything else I tried. You might want to look into this too if simple lecithin seems to help.
Best of Luck to you, and never give up!
Last edited by BillinSD; 11-02-2012 at 08:09 PM.
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