My toxins seem to be taking over, long term is fine, it's short term, turn around to do something & it's gone, can't seem to spell anymore, short temper, Do all what they say to do but every day it's worse, & now can sleep on a washing line lol
It is just making me feel so angry with myself.
Hi
I am very similar and live on laxative.
Its the only thing that keeps me from loosing days at a time, it may mean a lot of visits to the loo but at least I am back on the planet
I to would love to find others to meet I have tried setting up a web site but no luck yet. northamptonshireliversuppor.... The fatigue slows progress.
I experimented until I founds things that worked then stuck to them, AA is good but not really the right place for our problems
Keep us updated
Hi thanks for getting back to me. I will start again on lactulose, I stopped as what with taking the water tabs I found out I had moved into the loo lol. Also have you had lose if your balance, I am all over the place, It feels like I'm on a ship.
As far as meeting others like us I still think it would do a lot of good, perhaps we could all meet half way, after finding out what area we are, perhaps once a month, it would also give us something to look forward to, and talk about other things, bit like we would do on our own web site, (like you said) I will try and find out how to get one, someone on here would know. Well take care David hope talk soon xx,
Hi
Would love to keep in contact you can always contact by email on david@spherepartnership.co.uk
Yes loss of balance cannot even put my shirt when it gets bad
I would like to find other to chat to as its get s lonely without the pub and drink sometimes, but its a hell of lot better than the place I was as codie put it.
I will always be totally grateful to AA
Yes will do, I will e/mail you. Are you on face book, as you can talk on the chat part & privet messages, so others can not see what you are saying. When I e/mail you I will give you my site name etc x
Sorry face book no but the email I gave you is private
The hot feet and toe itching I thought was just something else and I by E45 by the large pot!
Are I now have shares in E45. I have just sent you a hole page on your e/mail and it said failed. Ha will do again later tomorrow. That took me half an hour, it is the d...d @spherepar......ship to lazy to type it out again lol
Y do you live on laxatives ?
I also go to AA. I find it helps cos no matter
How bad I feel I'm still a lot better than the hell
I was in ! My biggest problem would be the itch
It drives me to tears . What can I do but I'm still
Alive xxx
Codie, the itching drives me mad to, I tare myself to bits arms, legs, hands, but the tops of my feet are worse, more so at night. My consultant told me its the heat and keep my feet out of the bed, with doing that I also pile on lots & lots E45 cream, it works for me, try it and let me know how it go's x
Hi my brother is prescribed a lactulose syrup which helps as a laxative. He takes it three times a day but if he feels he is getting more confused he takes more. He has learned to recognize the signs of the toxins building up and takes it immediately. It is usually when he forgets how to turn the television on! He feels more in control now he knows what is happening.
I'm 12 weeks post liver transplant but before I had the transplant
I too suffered with bad toxins and memory loss I thought I was going
mad but then I also got prescribed lactulose syrup and gradually things changed for me, it really does work!! I also go to AA and once I started telling people about my problem I found others suffering with the same. Are you seeing a liver specialist? Do you have a good GP? It is really important to have these.
I wish you well and hope you get yourself prescibed this syrup 
Hi Anne yes I have a very good consultant, but only see her every 8-12 weeks. As far as my doctor, well rubbish dose not connect up with the hospital at all, has not seen me in about 8 mths, and most of the time it's not the same one, partly my fault, as I feel they are a waste of time, it's like now, my meds are 3 days late, yet again, so will have to ring. I would change but it will be further away, plus just to fed up with starting over again I will let you know if I get the lactulose x
Read up on Rifaximin. It is a long term antibiotic which kills the bugs in your gut that cause the toxins which cause your encepthalopathy. It really helped me. Ask your Dr to give this a try. I think my dose was 200 mg three times a day but am not sure about that.
Hello - wanted to step in and say the lactulose syrup is advised because the toxins your liver cannot get rid of naturally - stick (bind) to the lactulose so you can rid your body of them by 'pooing' them out - also with itching - a build up of toxins/bile salts can cause this also and a GP or consultant should be able to prescribe cholestyramine (a powder that is mixed with water to help this) also e45 is fab as it moisturises the skin - my husband has a scratch and makes it 10 times worse due to dry skin xxxx
i had both when i was on treatment .for me this what worked | cut out all the crap intake sugar processed milk get off all the pills .if your off treatment do a liver kidney flush .( i done a 14 day water flush and now d o once a week yoga and salt water lemon flush take about 4 5 hours its all on the net ,,found a good ayurvedic doctor,,got on to raw juicing , sprinkled a little dry cannabis leaf in my juice,.took lot of herbs milk thistle basil .. turmeric and a course of reishi gano mushrooms and ganocelium ,, worked for me ,,
Oh god Steve where do I get that lot from Asda Ha!! I am on a tablet a night 300mg of pure milk thistle & spices but gano mush, ganocelium, and the odd weed, I no they don't sell at Asda, so where the hell can you get it from !! x
internet for the mushrooms ..or good health stores ..the weed well ask the kids nicely ,,they all know somebody ,, ,,the hemp oil is in sainsbury's its trade name is called good oil .. ,,,, i was covered from head to foot and looked like raw meat ..
Ah thanks Steve. I will get some of that oil. I have lots of weeds but dig them up and put them in the brown bin lol. My family live to far away or I no I could. Don't know anyone here, but will ask. When you had it bad, did you get any little ulcers, I get rid of them soon as I see one. Thanks again x
the lot was weeping blood ,ulcers . calamine was very effective .but only short term . i really was climbing the wall... i am amazed i pulled through .. in god/dess we trust ..it not a nice place your in ,i fact it felt like a living hell ..but stay strong or weak just hang on in there ,and you can get through ..i am 18 m post treatment and was cleared of hep c early feb 2012 .i am so much better now .still have a scarred liver and cirrhosis but am controlling that with life ,changes ,
very best
steve
You amaze me that your out of hep C, your life change is very good to read, I believe you are what you eat (& Drink) The bit I don't understand is the % I was told that 20% of my liver was working, that was last year. Now I have a consultant She is good, but told me I was A & now I am C !!! she says that C is better. I don't no what the hell she was talking about, I just don't remember, I am not seeing her again till July. My doctor is C...p You sound like you my no what it all means x
the hep,c trust give good clear info. i had c /that is listed as the most difficult to shift i have found all my doctor and my treatment to have been lacking .just surviving the nhs is trial by fire ...and it is so difficult to work out what is going on when you feel ,well death warmed up is how i felt ,,i survived hep.c and now i am alive ,,and have come to an understanding with my liver it rules and if i feed it with lots of good things .,i graze all the time .no set meals just start feeding when i wake , a little bit at a time .. don't stress it ,give it lots of love and rest ,then it gives me a life i can live ,a bit of an odd life looking in on it ,but i am happy with it ,this time last year i was walking dead ,, and found it difficult to get from one end of my small flat to the other ,to day i was playing in the park with my 2 year old gran kid ,life is sweet and enjoy every moment that is given to me .HeP . C Sucks, The life out of you,
As I think you know, my son had it for 15yrs, don't no how long ago you found out. He was just 15yr, & yes it takes over your life, you did not have as much info then, I was just asking Doctors etc. mind you cirrhosis takes over to. I am going to see if we can get our own chat line, up & running, there are lots of people on here who would like one. I will let you know x
Hi My dad is 67 and has cirrhosis of the liver, hes not allowed to drive - through having heptic encepthalopathy. This is distroying him. Hes on lactulose 3 times a day and hes diabetic, on insulin ( type 2 ) which in its self is extremly hard to control. Sugar readings up and down like a yoyo. Dads cirrhosis was caused by fatty liver and diabeties. Hes so bored, he hates life and feels so sad. He Lives in Kesgrave, Suffolk, I've tried getting him to go out and join clubs.. but because he can't drive hes so restricted. I really wish there was a group or help with people with cirrhosis of the liver - becuase gp's don't really understand it and you have to reply on the hospital consulants to provide information at your 6mth check up !!! I feel theres no support at all.
Dad is either up or down with his mood swings, he has no patience whatsoever.. !
and flys off the handle at the drop of a hat!! Dad hasn't started to itch though... no yet.. will this happen next ?
Hi I am not sure where I fit in on this page. Forty years ago this month had baby, lost 14 pints 7 days later, give transfusion. Always not well went to doc who thought it was all in mind. In 1991 gave blood at work, received letter 'thanks but no thanks' had Hep C. Doc apologised and said in 1973 it was not known about. About 15 years ago I went on Drugs Trial (Have genome 1A) was given Interferon and Ribervirin. Three months on received phone call. Told stop the I and R not working. Still have Hep C and all the usual symptoms. End of last year was diagnosed with HCC it turned out after histology after operation (removed 1/3rd of liver) this year I had primary liver C. I get all the itches and did not connect with HCV. I do not have cirrhosis but fibrosis. Can you please explain about Lactulose. Since the op my tummy swells after every meal - I can see it and feel it - also I feel so exhausted after eating. Is this normal? Also since the op everything it too much of an effort for me.
Hi Tatjana sorry to hear all the things that you have gone though. I can tell you about Lactulose and why I take it ,as you no I have cirrhosis & fatty live, with this you get lots of toxins & that go's to your brain and make you forget the silliest things like what you were just going to say or do Lactulose makes you open your bowls at lest 3 times a day, makes it a lot essayer to go and the toxins pass each time you go to the loo your memory is a lot better but I still forget things just not as often, even spelling is poor now. Did you ever find out how you got hep c, my son had it for 13yrs he was offered interferon but on reading up on the effects it had we said that one day we would talk about it again as at that time he was in a very bad state of depression, we were told he had hep c when he was 15yr, after a few years he then got cirrhosis as well. He lost the fight November 20012 age 29yrs. I do feel for you as it is a hard illness to carry as many people still look down on it. I have herd that they may have got something in the pipe line that may help now, ask your doctor about this. I do wish you the very best and if you need anymore advice just ask, we all no bits about different things on here. Sorry its taken me a while to get back to you, but I have just got back from being in hospital. all the best Ruby
Hi Ruby, thanks for that and again, so sorry about your son. Also that you have just been in hospital
I do know how I got Hep C (genome 1A) June 73 I had a baby (just celebrated his 40th birthday) one week later lost 14 pints. Had blood transfusion. In those days they never tested blood. At work in 1991 Blood Transfusion visited and my friend badgered me to give blood because you had half hour off work and a biscuit. I succumbed and one week later got letter to say 'thanks but no thanks.' I had hep C. Went on drugs trial some years ago and was given Ribervirin and Interferon. Did not work because I had genome 1A. Last September on holiday in Turkey I had a pain. Went to hospital. after ultrasound told me I had mass on my liver. Went back to uk, saw my heptologist, then test after test. Told I had primary liver cancer.
Had liver resection in Jan this year. Lost short term memory, so tired every day etc.
First I could not get back on this website and then I got depressed.
But I think I do need now to talk about this as I cannot stand my loss of memory and my weakness in everything I try to do.
Cyber hugs to you.
Hello,
Have the same problems. Exactly. I take lactulose and xifaxan. Helps alot. just have to make constant BM's. Important to take something to clear toxins. High ammonia levels can cause bad damage. Hepatic Encephalopathy, google that and read. My sister passed away this month because of this. Please get help and take medication to clear toxins. Can do permanent damage. John
Hi Ruby.
I'm sorry for what you are experiencing. Please keep taking the lactulose and bring those ammonia numbers down. My husband was in self and refused the lactulose because of all the bathroom visits.
From not taking it, he passed away from hepatic encephalopathy. He was just 52.
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