Well the brain fog continues, my appt with doc yesterday was made for another office which I have never been to. Not sure what the receptionist was thinking. I am not sure what I am thinking :) Now my appt is next week.
ARRGGHH!
Have a great day!
There used to be a doctor who came on her who said the following, I found this and since my ammonia was elevated and I was having slight symptoms. I thought it would be a good idea, my doctor agreed however he did not bring it up, I did. I was started on a low dose 2 tablespoons a day, started taking 4 last week
Hepatitis Researcher
Jan 05, 2007
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.
Thank you both for your posts. Yes, I am seeing the liver doctor today and am going to go to see a Hepatologist in DC. I need to get a referal for DC Hepa Doc
Yes, after I relapsed from the first tx and before I started second tx I was being checked every 6 months, blood work, looking for HCC, ultrasound, then when VX950 was approved I asked to go on it. He said it would be very difficult for me, it was
He said it would either work or not, he was not putting my body through any additional tx over the recommended 24 weeks for relapsers. I hope it worked. I was UND at 8 weeks. Unfortunately if I were to relapse I would know right away as I have/had cryoglobulinemia, when I relapsed first time I had a rash all over.
Thank you
I'm glad you are UND at 8 weeks, post Tx, Dee. You weren't being stupid or in denial. It was up to your Doctor to explain to you, about this stuff~ make another appt, and get some answers though, and keep taking your lactulose.
This whole journey is a learning experience. You are such a kind and compassionate person, and I'm glad I met you, on this Forum <3
I am confused too on what your biopsy reads. It is interesting that your doctor called it transition to cirrhosis yet you need the laculose to keep down the ammonia. It does sound like you are at the beginning of a lot of research. Any plans for a biopsy since the last one had too small of a sample.
The good news is it looks like you have wiped out the hep C with 24 weeks. You can't ask for better than that. I sure would want to pin a doctor down on prognosis and what you need to do to stay healthy.
Please take care
bean
I didn't releaze you had advanced cirrhosis? Glad you are UND and looking good for SVR.
The only two drugs that treat Hepatic Encephalopathy (HE), Lactulose (or Kristalose) and Xifaxan (Rifaxamin) 550-mg 2x a day. Talk to your doctor about Xifaxan. It is very expensive. About $1,500 per month so hopefully you have good insurance.
Since you have cirrhosis it could take a long time before your still living liver cells (not the scar tissue) can regenerate again. Your doctor should have explained this to you. If you are seeing a gastroenterologist you should be seeing a hepatologist at a transplant center as they are much more knowledgeable and experienced in matters having to do with cirrhosis.
Here is the link to Xifaxan. Check out their $100 co-pay discount card too.
http://www.xifaxan550.com/
Without Xifaxan I don't know what I would do. Amazing stuff!
Good luck!
Cheers!
Hector