Hep C Discussion Forum

Trainhopper · Senior Member

RE: Bio Fibrin.... is it a real medical treatment or just mumbo jumbo?

Dzdayscomin · Senior Member

I also had a anal fissure many yrs ago and was actually treated with botox that worked excellent,this may be where you are uptaking the urea, again not a doc but with all my other problems I had forgotten this, I remember I had to go purchase it from a cosmetic surgeon and then bring it to a specialist who did the tx....wasn't pleasant but worked, and for the record only thing that went up that chute was scope for colonoscopy and that is how they found that,and who referred me to the dr. Who did the fissure tx, i always chalked it up drinking a lot of beer and not eating well when i did....easy to see why a guy would forget that episode, but i actually had the problem for a long time, before i got the courage up to get the colonoscopy done. I always t hought it was hemmoroids as that can result from fissures or t he other way around.

In fact i was told fissures will rarely ever heal and surgery is very scary and can have catastrophic effects, and I think that's why a lot of people avoid seeing a doc about it, I think it cost me $300 cash for the botox and then my health care paid for what was listed as office visit, the thing i remember with fissure was you never felt clean and if you weren't out right bleeding than it was trying to heal,so ya always felt greasy, but the next bowel movement just tore it open again...I'm gonna guess i got that fixed about 7 or so years ago.

My advice go to doc tell them about rectal bleeding (put all shame aside its worth it) they will be forced to approve you to get a colonoscopy and tell them about the fissure (you will want them to be careful as fissures hurt like hell) and then ask them and or do some research on botox they may have FDA approved it by now but it was just discussion of approval then.

I have not bled one time since the botox and it was the best thing I ever did.

Hope it helps because I'm hoping to reclose that bad chapter....eeeewe yuk!

Glad to hear you want to make positive changes Robin...it's so worth it.

Trainhopper · Senior Member

Duane... You uplifting guy... I had my pot pipe in hand ready to rip it an z out... then the echo of what you said was in my head on every loud speaker... Ive taken seroquel for quit some time only stopping with the Crap a$$ diag of H.E. I then used massive amounts of pot to help and keep me sedated. So... I just popped Id say (hard telling 400mg pills are big) 50mg just to sleep. I hope it works with less ill effect then my per usual mary jane regiment. as for G.I. Bleeding... yes not much but enough for me to notice. at one point its was just blood on the ticket not poop. that was only once. I told my dr she said it was prob an anal fissure... K? I'm not gay... I wasnt "straining" at the time. I have been having G.I. issues just a touchy tummy... drink to fast... eat too fast. I just always contributed it to my flagrant abuse of liquor and drugs. As for a colon-whatever (too tired to trial and error the proper spelling) never. Last blood pressure read 72/110

-- Edited by Trainhopper on Friday 26th of September 2014 07:45:54 AM

Dzdayscomin · Senior Member

Ammonia levels,

How is your blood pressure?

Normally in Children but Reyes syndrome

Have you had a colonoscopy? Any GI bleeding or rectal issues

Are you exposed to urea at work or anything like that?

http://emedicine.medscape.com/article/1174503-overview

Just some ideas.

Trainhopper · Senior Member

Duane... Dude you didnt jack my thread.... you jacked my heart! I like debating people, (for some a$$hole reason) and for that I must apologize. The things you just said.... I had to honestly move or Id have dripped eye juices in my laptop. I'm so glad to hear of the progress you've made. That there.... some up-lifting stuff). My heart goes out to you. You had no choice. Unlike me, I knew the choice and I laughed. But Jesus Duane you friggin rock buddy! A true champion of the light! Not to sound too corny ( i know... too late), but those words of encouragement elate me to no end! When the small town doc told me I had H.E. And begging stages of liver failure, I was floored, but I knew deep down that he was most likely right. I almost said ftw and hit the needle again. But instead a lil b.s. voice in my head said " na couldnt be. youve never even had yellow eyes for more then 2 or 3 days" so I decided to fight and start this path I am so valiantly on. If I had just a shred of the courage you have... Duane.... You are an awesome soul! with that I truly am out good night cool people

Dzdayscomin · Senior Member

That is where support comes in, we are here to encourage you to make choices that will not let you get to a condition like me....this will be a repeat for many of the veterans but if it it helps you Robin I'll deal with it.

I got HCV as a result of a blood transfusion in an auto accident that i was completely innocent in,this was in 1983, I never was involved in any risky behavior and married still to the same woman who was also in that car 6 months after we were married, we both received blood that night hers was good mine was not. I went 28 some yrs not knowing I had HCV I never was sick and never went to the doctor but a few times later in the 90's for things like b ack pain and some staining in my chins, at a local Health Partners clinic where they actually drew blood and found I had low platelets and dismissing it as thrombo cytopeania..as well as the discovery of PVC's they said to much diet coke.....so they had it right there with the low platelets, but never tied it together to check for HEP C, all along i was an occasional cigar smoker, and faithful daily few beer drinker guy after work, and much more on the weekends with the boys, no hard liquor or drugs, until one winter day in 2012 I noticed by legs were swelled up and my beer belly was a bit larger, so I gathered up my pride of never needing to go to the doctor because they have this thing about cleaning my ears every time I go instead of addressing the problem I went in for, and asked for a full physical....a few days later i got a phone call saying I tested positive for HCV and that by my LFT's I have cirhosiss, from that day my life was changed it turned out that not only did I have HCV but decompensated cirhosiss, and end stage liver disease requiring transplant, and to top it off I was treatment intolerant, meaning I was to sick for any of the treatments that were available at that point, so i was told to get my affairs in order and get listed for transplant, that meant no more drinking or smoking ever again just like that, since that time even though I stopped everything that would do further damage, changed my diet, went on diuretics and got man boobs, things still went down hill, When my MELD score hit 17 I was so sick, I had lost some 70 lbs at the peak of my illness and couldn't eat,sleep,had zero energy and went on pallitive care,i was dying and I knew it, and so did my family that is when I started the pain meds and it really helped me cope, then I heard here about the Sovaldi/Olysio off label tx and said why not me?so being my I own advocate I went to my hepatologist and said why not me? He said yeah why not, so we put in for it and I had renewed hope, than I was rejected twice that hurt and literally crushed me....and i gave up, thinking i wouldn't make it, then out of the blue I got a call this March that I was approved 2 days later I started tx and it was succesful, and I was SVR as of Aug 29th 2014 happiest day of my life..... then 7 days later I was diagnosed with primary liver cancer HCC and just this past Wed. I had surgery to remove the tumor...so that brings us to today.....there are many other things i went thru that were very unpleasant, paracentesis, kidney stone removal,etc... so this is what i mean when I say it's not worth one drink, one smoke, or one high to go thru that,and if I can convince you or anyone that your struggles to give these things up is for you....And I sincerely mean it in the most caring way because i wish I'd have found my infection with numbers like yours are today, so if this can happen to someone that never had a reason to think he was at risk, while knowing you can prevent further damage is so powerful it must be said....so take your time, find your way,take pride in your small victories because each one is better than any championship ! you are doing great just keep going their is a greater power at work in you that is leading you down this path....who will you help Robin? First yourself, so your fit for the challenge to help that person that was where you were just not so long ago I believe it's God working in you the same way he is in me...we provide hope that there are better days whether it be on earth or in heaven!

Sorry if i jacked your thread

Duane

Trainhopper · Senior Member

one more thing thats been nagging me.... When I first got diagnosed with H.E. I had an ammonia count of 57. I read some where (in my unrelenting use of the internet) patients going into hepatic coma at 105 some even at 80? I think it said 80. So... If my liver functions are decent and my labs look fair to midland. How the hell am I retaining ammonia? And the doctors having known this, only tested me twice more for it? It did decrease but hasnt subsided, well last I knew. I begged my normal p.c.p. (ha ha I love that) she's gonna see me tomorrow at 8am Im going to beg for an ammonia test as its been 3 months since my last. But as I just said 8 am and its lol almost 1.... Im hitting the sheets. night cool people .... And thanx again this has been real..

Trainhopper · Senior Member

Thanks for the input. I have 12 7 mg patches I bought them in hopes of quitting. Then I heard some stuff.... cant really get much about it online any where... So (in my infinite stupidity) decided to keep smoking but to cut back.... its worked but slowly... as in well, whatever I said earlier. The mental part on my end? I have no comment. I'm trying to eat right I.E. good veg/fruit tuna/bean/nuts for protein. It's way hard to do on food stamps, but I still try... The whole salt thing? Y'all ruined my world saying that.... I do loves my ramen/pot noodle. But alas, I kept it down to a respectable intake of around, (and I use the term around loosely) 600? It's killing me to see my lil munchies go unsavored. But this is some serious stuff. You know health and all. To be honest I had no idea that a Ramen had 860mg sodium. Never bothered to look. I looked at my peanut butter filled cookie things... the sugar wasnt to bad at 35g but the sodium... 280? are you kidding me? So yeah the whole no salt thing.... wheres MY support group? If there's not one can I start the Sodium Support group? (lol)

-- Edited by Trainhopper on Friday 26th of September 2014 06:26:46 AM

wmlj1960 · Moderator

Trainhopper wrote:
I want to try the patch but Ive heard bad stuff on the chems that are osmosized (spelling I know is wrong) but with the mental crap I already deal with, it's best for me to not go cold turkey. But again your right bout the chems

I considered the chems in the patch to be a way lessor of the two evils between chems vs lighting up. I quit a few months ago using the patch but not for the duration that they suggest. I think they suggest like 21mg for 2 weeks - 14 mg for 2wks - 7mg for 2 wks or something like that. I had already cut down from 1 1/2 pack Marlboro red to 3/4 pk ultra lights so I only used the 21mg patches for like 3 days then went to 14mg for a week then 7mg for a few days. This pretty much took care of the physical withdrawals with only headaches on the 21mg's for Sx's.

But the physiological withdrawals were where my decision to quit was put to the test. And that decision was tested minute by minute at first. But I stuck with it and came up with some little tricks that help a bit when the desire to smoke comes up. One trick is to not entertain the thought. Nicotine is just like any other addictive substance and I know if I sit around and entertain the thought of how good that first shot of heroin is going to feel, then I'm setting myself up for failure... so I don't do it. Another trick is that I have to remember at that point of decision of whether to smoke or not, that the first puff is what is going to hook me again. If I don't take the first puff = problem solved.

You'll find some tricks that help you too, but the main thing is to make a firm decision and that MUST be followed with action to not light up for any reason on a daily basis.

That's some of what has worked for me so far, and you can find what works for you. And the decision is all up to you, then there are countless support options to help out with the living life chemical free part.

It's a beeotch at first, but well worth it in the long run. smile

Trainhopper · Senior Member

But all B.S. aside your right as far as I need to stop putting bs in my body. I have cut my cigs down considerably. 5 months ago I smoked roll your own non-filters bout 25-30 a day. Now, Im at lights and about 15 a day. I want to try the patch but Ive heard bad stuff on the chems that are osmosized (spelling I know is wrong) but with the mental crap I already deal with, it's best for me to not go cold turkey. But again your right bout the chems

Trainhopper · Senior Member

Ah ha And I counter with this from Oxford College dated 2013

http://cid.oxfordjournals.org/content/early/2013/07/03/cid.cit378.long

Dzdayscomin · Senior Member

Robin this is from 2008 but its a respected read.

http://m.gastro.org/news/articles/2008/01/28/regular-marijuana-use-increases-risk-of-hepatitis-c-related-liver-damage

wmlj1960 · Moderator

Good post Duane.

Learning to live a chemical free life is difficult because many of these things make us feel better in that time and space, for many it takes a real scare that their life could end to realize that there is no greater high than a breath of fresh air, a cool drink of water and the people we care about near and safe....

For me it took repeated scares but I finally quit the act of introducing any mind and mood altering substance into my body. I even have been pain pill free other than ibuprofen for a couple weeks now. But it isn't easy and that doesn't mean the monkey is off my back for good. I quit smoking months ago, but I've been wanting a cigarette everyday for about the last month but I choose to live today. So I'm a winner for today. We'll deal with tomorrow when it gets here... smile

Trainhopper · Senior Member

I will mos def be sticking around. But as far as the pot thing goes. I'm supposed to take seroquel 400 mg a day for psychotic episodes. When I lived in Denver I got into the whole putting chems in that would hurt my liver. I consulted a "weed" doctor. He said that early testing showed the cbc's that's in pot help with liver function, and it's also a good psych med. Down side, in some cases of pre-existing liver disease it showed fibrosis. So, I'm stuck. I dig the "high" cause I deal better in public situations and I have a hunger that nvr dies (lol). But... if it causes damage to my already (lets say fragile) liver, should I go back on the seroquel? Oh, and Adivan?

wmlj1960 · Moderator

I'm real happy for you buddy and we will be waiting for you to post what information you find out on Oct 3. In the mean time, hang around and get involved in the forum. Isiscat2011 suggested to me in my early days here to get involved and get educated about my illness and I now see what a valuable suggestion that was.

Dzdayscomin · Senior Member

Trainhopper wrote:
Thank you Duane... I needed to hear that... But (and here in lays the million dollar question), Wheres the ammonia lvl on the results? And how with good liver function, do I show signs Hepatic Encephilopathy? I was told (lets just call it H.E.) is caused when the liver is so scarred that blood has a very hard time to flow freely through it, causing a build up of deadly ammonia in the blood. I mean I hope thats an accurate description. It's a little depressing to have a small town doctor basically tell me that my Hep was so bad Im at the begging stages of liver failure (this was in May). Every doc since then says not a chance.... So why do I have symptoms closely resembling H.E.? Also (my last question) If I am showing signs of H.E. wheres the damn ammonia lvl on the labs? Im sorry... I'm not trying to sound dickish. It's just having a roller coaster ride with this crap takes it's toll. I was wrong I have one more question. Ive researched and researched what effect pot has on hep c. it goes both ways from both angles. What's ur take Duane? Pot? or no?

Well my answer is not medical, but more common sense to my mind, HCV is more than capable enough of doing enough damage to arguably the most vital organ in your body, you can keep the body working without any other organ but the liver, you can be brain dead but machines can keep your body running, same with the heart, and lungs but the liver is irreplaceable by any machine, so that said why put any chemical into it that it doesn't need to function and do it's job, so in my understanding almost anything that goes in the mouth, nose, veins, rear end or any other opening must be filtered by the liver before or after it enters the blood stream, or in the case of smoking things it goes thru the lungs and introduced to the blood stream there but at some point will go thru the liver to remove the toxins, i grew up in the 60's and 70's and if ya ever saw a chamber pipe that resin is going into your body and your lungs and liver is like the chamber, so how good can it be for you....so since I can never answer a straight question, in a round about way I say NO it's not good for your liver....i always think of that commercial with the horse with a cigarette in it's mouth and the caption saying "look un-natural"

Learning to live a chemical free life is difficult because many of these things make us feel better in that time and space, for many it takes a real scare that their life could end to realize that there is no greater high than a breath of fresh air, a cool drink of water and the people we care about near and safe....i could be classified as a hypocrite on this very issue with my daily use of narcotic pain killers, but it is not a want of the high it's the want of being able to participate in life with a good spirit and enjoy the life I have, which to many would not seem like much but it is all I have so i can justify it as a need, so ask yourself is it a want or a need will you stop eating, getting excercise and socializing with those you love if you don't smoke weed? If it is than it's a need otherwise it's a want and requires justification to the damage that will occur from it's use.

This is not meant to be pointed at you or anyone, and in no way judgmental in nature just my way of viewing things, i don't put anything in that I don't need. Except that occasional custard filled bismark !

Trainhopper · Senior Member

thank you all for the good information. It helps ease my anxiety a ton... I did move my appointment to Oct. 3rd. And my dr is a gastroen. She seems okay, but it would also seem as if I'm just another number to her.. No compassion, all business, hard to ask questions cause she runs over what your saying with what she thinks the question is, then the answer. But, I won't complain (that much). Thank you again, the support and knowledge is invaluable to me. The support is awesome!

Isiscat2011 · Guru

There you go, Robin. Malcolm (Mallani) actually IS a physician, and he has extensive knowledge of all things HCV, so you can rely on the accuracy of his comments.

mallani · Guru

Hi Robin,

Your blood ammonia hasn't been done. There is no evidence of significant liver disease, so you don't have H.E. Avoid pot!

A few levels are a bit up, like Hb, RBC and HCT. These are not significant.

The slightly elevated CO2 is a bit odd, but I wouldn't worry about it.

The increased lymphocytes just reflect the fact that you have chronic HepC.

The creatinine is also up a bit but your GFR is OK, so you probably don't have renal disease.

So, you've got Chronic HepC, Geno 2b with a VL of 2.5M. Liver function is good so get some treatment. Your chances of SVR are close to 100%. Cheers.

Isiscat2011 · Guru

Hi Robin:

I'm not a doctor or a medical professional of any kind but my reading of your blood results is consistent with what Duane stated. Cirrhotics often have low platelets and very high ALT/AST readings which you do not. Your red blood count (indicated as RBC/HGB/HCT) are a bit elevated which could be consistent with liver damage but for the most part your values are very much within normal ranges.

Hepatic Encephalopathy is generally seen in people who have severe liver damage--decompensated cirrhotics--I would be surprised if that fits here. Also, an ultrasound would pick up an enlarged or decreased liver size, and that isn't mentioned. Some other values they look at like INR, Creatinine, Bill, also look normal in your blood work.

I am assuming your appointment in Nov is with a specialist--a Hepatologist or Gastroenterologist--he or she will be able to tell you more. Hopefully, you will have a thorough liver assessment scheduled at that time including either a biopsy or a fibroscan.

Genotype 2 is much less common in the US than GT 1. I haven't read much about it but my understanding is that the treatment for GT2s is with Sovaldi and Ribavirin for 12 weeks. The Sovaldi/Ledipasvir combo that will be FDA approved October 10th is intended for use with GT1s as far as I know. Your doc will be able to tell you more about that.

I would definitely treat as soon as possible and when you see your doc in November would be a good time to start. There is no reason you shouldn't be able to wait till then from what I can tell.

Trainhopper · Senior Member

Thank you Duane... I needed to hear that... But (and here in lays the million dollar question), Wheres the ammonia lvl on the results? And how with good liver function, do I show signs Hepatic Encephilopathy? I was told (lets just call it H.E.) is caused when the liver is so scarred that blood has a very hard time to flow freely through it, causing a build up of deadly ammonia in the blood. I mean I hope thats an accurate description. It's a little depressing to have a small town doctor basically tell me that my Hep was so bad Im at the begging stages of liver failure (this was in May). Every doc since then says not a chance.... So why do I have symptoms closely resembling H.E.? Also (my last question) If I am showing signs of H.E. wheres the damn ammonia lvl on the labs? Im sorry... I'm not trying to sound dickish. It's just having a roller coaster ride with this crap takes it's toll. I was wrong I have one more question. Ive researched and researched what effect pot has on hep c. it goes both ways from both angles. What's ur take Duane? Pot? or no?

Dzdayscomin · Senior Member

Nice job Robin,

Your liver damage from those results are minimal if any to my eyes, you most certainly can wait and do the shorter duration tx with much less sx.

You will beat this thing and have a terrific future with very minimal effects and probably complete regeneration to just like new condition.

The unremarkable Ultra sound comment means nothing concerning like fibrosis etc...

You have made a very wise choice to treat this now, and this time next year you probably will have forgotten all about this entire thing.

Many of us would have loved to find it as you have, it's a gift I hope you see it as such!

Very happy for you !

Duane

Edit....I should throw a disclaimer in there saying anything can happen when it comes to tx so what im saying is nothing is ever 100% certain but it looks really good to me

-- Edited by Dzdayscomin on Friday 26th of September 2014 02:56:36 AM

-- Edited by Dzdayscomin on Friday 26th of September 2014 02:57:10 AM

wmlj1960 · Moderator

This is where I let a more knowledgeable member help you. Be patient, another member will likely post with some answers for you. smile

Trainhopper · Senior Member

I dont have a scanner and I type with the whole 2 fingers deal... (lol) this is going to take me a minute.

This is my last blood panel as of Sept 13, 2014 (verbatim)

Dear Robin Brandel

Below are the results of your recent testing. For any questions please contact Dr Talaat or her nurse at the digestive heath clinic (Mizzou)

Liver ultrasound came back unremarkable

If hepatitis C was detected as you already knew.

We'll discuss treatment in the next visit.

We will see you in the clinic as scheduled

US Abdomen (Non Vascular) 9/04/2014

Hepatitis B Surface Ab Interpretation 8/20/2014

Hepatitis B Core Antibody Interpretation ((A)) 8/20/2014

Hepatitis B Surface Ag Interpretation 8/20/2014

WBC (x10(9)/L) 5.9 3.5-10.5 8/20/2014

RBC (x10(12)/L) 5.60 ((H)) 3.90-5.03 8/20/2014

HBG (g/dL) 17.3 ((H)) 12.0-15.5 8/20/2014

HCT (%) 51.2 ((H)) 34.9-44.5 8/20/2014

MCV (fL) 91.4 81.6-98.3 8/20/14

MCH (pg) 30.9 26.0-33.0 8/20/2014

MCHC (g/dL) 33.8 32.0-36.0 8/20/2014

RDW CV (%) 13.0 11.9-15.5 8/20/2014

RDW SD (fL) 43.3 36.4-46.3 8/20/2014

PLT (x10(9)/L) 186 150-450 8/20/2014

MPV 10.8 8.0-12.0 8/20/2014

% Nucleated RBCs(%) 0.0 8/20/2014

Absolute Nucleated RBCs (%) 0.0 8/20/2014

% Granulocytes (%) 32.2 8/20/2014

Absolute Granulocytes (x10(9)/L) 1.90 1.70-7.00 8/20/2014

% Immature Granulocytes (%) 0.2 8/20/2014

Abs Immature Granulocytes (x10(9)/L) 0.01 8/20/2014

% Lymphocytes (%) 58.2 8/20/2014

Abs Lymphocytes (x10(9)L) 3.42 (((H))) 0.90-2.90 8/20/2014

% Monocytes (%) 7.0 8/20/2014

Abs Monocytes (x10(9)/L) 0.41 0.30-0.90 8/20/2014

% Eosinophilis (%) 1.7 8/20/2014

Abs Eosinophils (x10(9)/L) 0.10 0.05-0.50 8/20/2014

% Basophils (%) 0.7 8/20/2014

Abs Basophils (x10(9)/L) 0.04 0.00-0.30 8/20/2014

Sodium (mmol/L) 139 136-145 8/20/2014

Potassium (mmol/L) 4.3 3.5-5.1 8/20/2014

Chloride (mmol/L) 101 98-107 8/20/2014

CO2 (mmol/L) 31 (((H))) 22-29 8/20/2014

Glucose Lvl (mg/dL) 87 74-109 8/20/2014

BUN (mg/dL) 15 6-20 8/20/2014

Creatinine, standardized (mg/dL) 1.02 (((H))) 0.51-0.95 8/20/2014

Calcium (mg/dL) 10.1 8.6-10.2 8/20/2014

Alkaline Phosphate (unit/L) 52 35-104 8/20/2014

AST-SGOT (unit/L) 12 0-32 8/20/2014

AST-SGPT (unit/L) 27 10-35 8/20/2014

T Bili (mg/dL) 0.9 0.1-1.2 8/20/2014

Total Protein (g/dL) 7.4 6.6-8.7 8/20/2014

Albumin (g/dL) 5.0 3.5-5.2 8/20/2014

Anion gap (mmol/L) 11 0-20 8/20/2014

GFR For African American (mL/min) 75.18 >=50.00 - 8/20/2014

GFR non African American (mL/min) 62.03 >=50.00 - 8/20/2014

GFR for peds (mL/min) Not calculated 8/20/2014

PT (second(s)) 14.5 12.9-15.7 8/20/2014

Inr 1.0 0.8-1.1 8/20/2014

Hep. A Aby, Total Non-reactive 8/20/2014

Hep. C Aby by EIA Reactive ((A)) 8/20/2014

Hep. B Aby Non-Reactive 8/20/2014

Hep B Core Ab Reactive ((A)) 8/20/2014

Hep B Surface Ag Non-Reactive 8/20/2014

HIV 1,2 Antigen Antibody Non-Reactive 8/20/2014

HCV Genotype 2 8/20/2014

HCV Subtype b 8/20/2014

HCV Viral Load (lU/mL) 2,509,799 80/20/2014

HCV Log (log10) 6.40 8/20/2014

Sincerely,

Nizar Talaat

thats verbatim. the numbers on the left are my results. The numbers on the right are the normal range... Jesus that took like an hour (but well, worth it for the knowledge)

-- Edited by Trainhopper on Friday 26th of September 2014 02:07:48 AM

Dzdayscomin · Senior Member

Like Mike said, I'm not a Dr. But I do watch House on TV alot.....lol

wmlj1960 · Moderator

I agree with Duane. I would also wait for the new drugs. In this case I say sooner may not necessarily be better.

I was just mainly concerned as to whether you have some sort of plan for treatment or not. So hopefully they will have some answers for you at your appointment in Nov.

I'm not sure what "unremarkable" means for the ultrasound result. I would maybe guess 'undetectable for ascites fluid' but that does not sound correct in my mind. Can you post your lab results so we can get a better idea of what your status is? This is not a 'medical' forum but we have some very knowledgeable healthcare professionals that are forum members who can look at your results and give you an accurate assessment of your status as well as make recommendations.

Dzdayscomin · Senior Member

Trainhopper wrote:
Lets put it this way (as i do truly laugh when I type this) as far as the digestive clinic goes, the first set of results said my ultrasound results were normal. Well I hadn't even had one done. and I mean ever had one done. When they sent the letter out me it was 2 days before my ultrasound. I called them 3 days after it, asked them if the results the sent me were correct, and to please check again... 3 days later I got an extended version of the blood panel, as in more acros, but the same numbers for ones in the first. It also said my ultrasound came back unremarkable and see me at my next appointment. When I saw them to have the panel done and what not , she said depending on certain factors, new meds come out in Oct. So she told me to make an appointment for Nov. I really want to stop the virus. I have gt 2b. and Ive heard/read thats easier of the troop of geno-types so Ill take the old meds dammit! I just want to Live now! Not have this progress even further and land me in hospice before my lil girl graduates. Not to vent too much but...... THE SOONER THE BETTER RIGHT?

I had the easy street treatment in Sovadi/Olysio only, but I'm gonna go out on a limb here and say wait for the new ones, I'll let the others here that had to deal with Riba, peg interferon, etc tell you what they think, 1 month is worth the wait.

Duane

Trainhopper · Senior Member

Lets put it this way (as i do truly laugh when I type this) as far as the digestive clinic goes, the first set of results said my ultrasound results were normal. Well I hadn't even had one done. and I mean ever had one done. When they sent the letter out me it was 2 days before my ultrasound. I called them 3 days after it, asked them if the results the sent me were correct, and to please check again... 3 days later I got an extended version of the blood panel, as in more acros, but the same numbers for ones in the first. It also said my ultrasound came back unremarkable and see me at my next appointment. When I saw them to have the panel done and what not , she said depending on certain factors, new meds come out in Oct. So she told me to make an appointment for Nov. I really want to stop the virus. I have gt 2b. and Ive heard/read thats easier of the troop of geno-types so Ill take the old meds dammit! I just want to Live now! Not have this progress even further and land me in hospice before my lil girl graduates. Not to vent too much but...... THE SOONER THE BETTER RIGHT?

wmlj1960 · Moderator

That lactulose dosage seems small to me. I take 45ml x3 day = 135ml and I have taken more than that in the past. You cannot overdose on the sweet crap, but too much is not good so check with your Dr before increasing it. Sufficient lactulose is certainly needed for controlling the progression of hepatic encephalopathy.

I don't know crap about supplements but I have seen some warnings against using milk thistle. Someone with better knowledge will have to help you figure out that deal.

A list of some of the acronyms can be found HERE.

If that digestive clinic has looked for ascites fluid via CT scan or MRI or ultrasound, and did not see any, then there may indeed be another issue. The fluid would be easily seen with either of those imaging techniques, so it's not like they just missed it.

I am also on disability with Medicare insurance which is covering the super high cost of the Tx I'm on now. Has your Dr discussed plans to get you started on Tx to eliminate the HepC infection?

-- Edited by wmlj1960 on Thursday 25th of September 2014 07:50:28 PM

Trainhopper · Senior Member

thats some awesome info thank you! Diuretics sounds good to me. the only supplement I take is milk thistle. Im also on lactulose 60 ml a day... Im on disability now (thank god for small favors) and have full coverage. I have come at the docs with an up beat attitude. But I fear being in a somewhat backwards state (Missouri) that I wont get the care that I need. I have quit drinking... I dont keep too much track but its been at least the 6 month mark. I havent drank steady since 2011 and I quit the heroin years ago as well. I smoke cigarettes but have gone from non filters to lights in 4 months and am trying to steadily quit. The one thing Im not savvy on is the acronyms that you used but I get the gist. Again thank you for the information. I do have I guess would be mediocre digestive clinic at University of Missouri (Mizzou) but again they seem to believe its some thing else. Also just recently, if I pull my knees to my chest it will exacerbate my head aches and belly pain.

-- Edited by Trainhopper on Thursday 25th of September 2014 07:09:09 PM

Dzdayscomin · Senior Member

Welcome, my path here is very much different than yours but the how really doesn't matter, it's the here and now that counts from you dates i see you are relatively young, and if you would give up "the ride of your past" I don't want you to edit... miss catching that train of your future because it has as many great things to offer you as well.

First I agree with Mike you present with Acites and it sounds rather acute, if you have never been on diuretics they can be very effective espec Ially when first starting and even if you didn't have insurance they are so cheap you could probably get a 90 day supply for less than $25.00 if i recall and they work...just be prepared to have to pee a lot for a few hrs each day after taking them (morning is best or you'll be up all night to go)

Salt has to go if you can handle it 1200mg max daily until its controlled then up to maybe 1500mg, believe me this will be one of the biggest challanges, to put into perspective a can of chk noodle soup has about 800mg i think so you get the idea, you need lots of good protein vegetable and fish is probably the best. Also if it were me t hat were the dr and I'm not, I would tell you not to take any supplements and see a nutritionist, all you probably need is a b12 vitamin daily and a low salt diet, supplements are just making your liver work harder to process them with little to now real benifit, I have a very good care team and this has been their approach with me and got me with decompensted cirhosiss ESLD to SVR minimal acites ,and near normal liver function sfter having HCV for 30 yrs not knowing I was infected until it was to late etc..

I'm in pretty tough shape today so i may get corrected by a few folks here that know way more than I...but that's good.

Next i hope you stopped drinking? that and HCV are like a small fire and a 55 gal drum of gas as far as accelerating the damage.

It may be best for you to start all over with a new clinic that will get you to a hepatologist that specializes in treat HCV and cirrhosis, the key is to be honest with them and show a desire to go fwd and let the past be behind you.

I'm glad you came here for support that is non judgemental and a place to vent, ask questions, and share your experiences, between us all there is one thing one of us has not experienced.

Best of luck,

Duane

-- Edited by Dzdayscomin on Thursday 25th of September 2014 08:09:28 PM

Angel67 · Senior Member

There seems to be many" miracle" cures on the internet. I keep seeing the name, Dr Berkson appear...as it happens I already take all the herbal stuff he doles out ,Milk thistle, Selenium,Alpha lipoic acid. I would change everything I did wrong if I could, I wish I never took that first drink, I wish I never took a drug as all that came of it was chaos,pain & now ill health....**** that ****, I would trade all that past euphoria for just normal sanity...but that ship has sailed long ago. Still, many people say that this is the best time in history to be diagnosed with Hep c as the new treatments actually seem to work without killing you....fingers crossed!

wmlj1960 · Moderator

I've been there with the IV drugs in the mid 80's when I got HepC, and all the other crap that went along with this life. I understand what you mean about not changing anything, and I would agree in the sense that all I went through is my life and my experience, with all the heartaches and killer fun times too. My bad health and low status in this world today may be a result of that experience but at least I finally kicked the coke, heroin, alcohol and even cigarette addiction. And as a result of all that, I may get an opportunity to use my experience to help a younger person get out of that self destructive life before causing the extensive damage as I did.

There is one part of my life I would certainly change, and that is when I was not there to support my mother when she was dying of cancer in 1994. I was probably in a bar or shooting dope somewhere etc. etc. instead of being with her. Not a day goes by now that I don't regret that. It will likely haunt me up until the day I die.

So I offer my experience to you, since your mother is still alive. Don't take her for granite. Taking care of yourself and your body and HepC will keep that life you wouldn't change to keep on making you for a while longer. And that will certainly make her happy too. Don't make the mistake that I did.

Hell, I'm rambling too. But that's okay around here as long as we don't disrespect the other users. biggrin

Trainhopper · Senior Member

Nice... yeah I rode freight trains for 15 years... An awesome lifestyle... the only unawesome part.... I.V. drugs... Im from Los Angeles originally and shootin dope was the norm at 15 in the mid 90's. My mom asked me the other day if I could change anything what would it be? I put it simply... "ma, Ill take the "C" Ill take the heartache the pain tragedy and **** of life... So nothin! ma Id keep every part of my life the same.... Cause it's been one hell of a ride" Even the past addiction to heroin I'd keep.... just because (and hear me out) without the hardships of what I/we as people go through in life the trials and tribulations being junkies prostitutes pimps... without that, we'd never remember why we love or why we have compassion. dont get me wrong... Im pretty pissed at life sometimes. But everything.... the goods the bads the in betweens... it's all what makes us... us... sorry I am rambling

wmlj1960 · Moderator

I'm no Dr nor expert on any of this but I have a decompensated liver and have suffered from excessive ascites fluid accumulation and currently suffer from hepatic encephalopathy. The pain in your belly is the result of accumulation of acities fluid in the abdominal cavity. You should be on a low sodium diet and your doctor should have you taking Aldactone (spiranolactone) and Lasix (furosemide) for this condition. If the fluid builds up too mjuch, you will need to have it drained through a proceedure called paracentesis. This proceedure is painful but it is certainly worth it to get the relief from what you are experiencing.

I have been on massive doeses of lactulose for it's laxative effects but even then I got very little relief from the headaches. Talk to your doctor about getting you started on a medicine called Xifaxan (Rifaximin) 550mg. It's purpose is to reduce hepatic encephalopathy effects and progression and it will help with your headaches too.

I'm an old rail fan too. I'm in Memphis Tn, the most eastern point of the UP routes at the Mississippi river. Gotta love the old Union Pacific Big Boy steamers, the awesome turbines and of course the DDA40x's.

Welcome to the forum Trainhopper. smile

Trainhopper · Senior Member

sorry I keep asking all these questions....But i gotta know for me... its hard enough being social... let alone daing with such a stigma attached to me... So the more knowledge the more Ill be able to cope

Trainhopper · Senior Member

OMG geno 2 doesnt need interfuron? holy **** thats awsome (i just googled it) so what the deal with the whole platelet thing? can they treat a patient without them? also how can I get my belly to stop hurting? it seems like all day every day its really starting to be painful

Trainhopper · Senior Member

they did one on me like 2 weeks ago... the results "unremarkable" really?you dick then whyd you comment... theyve done tons of tests on me to see if I have brain swelling.... no dice... dome piece = intact no abnormalities. the lactulose seems to help the head aches but thats about it....They also did a spinal tap and eeg. again the quacks seem to think its like some weird **** like M.S. also... Like Ive been saying all the test supported something other then the serious cirhhosis

Tig · Admin

Genotype 2 is one of the many genotypes and is one of the easiest to treat. To my knowledge it doesn't offer up any additional problems that you should be more concerned about (compared to the rest). There are 7 genotypes (see below).That's just bunk whomever said that! A viral load of 2.5 million isn't that bad actually. I would class that as a moderate level. But let it be known that your viral load fluctuates all the time. It can rise several million higher or drop just as much over a given period of time. My viral load (VL) was 5 million when I started treatment and now I'm 9 months post treatment and achieved SVR. My info is listed in my signature section, that's where many of us put our info and it makes it easier to share as we post back and forth. I've got to go but will be around. There are always helpful people on the forum if you have any questions or just want to talk. Good luck...

Heres some info to read on some of the topics we talked about.

http://www.hepatitis.va.gov/provider/reviews/genotypes.asp

http://www.healthgrades.com/conditions/elevated-blood-ammonia-level

Tig

Trainhopper · Senior Member

they did one on me like 2 weeks ago... the results "unremarkable" really?you dick then whyd you comment... theyve done tons of tests on me to see if I have brain swelling.... no dice... dome piece = intact no abnormalities. the lactulose seems to help the head aches but thats about it....They also did a spinal tap and eeg. again the quacks seem to think its like some weird **** like M.S.

Trainhopper · Senior Member

well thank you both for the warm welcome. sorry its under these circumstances. I do intend to stick around. And that U.P.R.R. sign is in west yellowstone Montana... (I vacation there every year if I can)

To be honest... Im scared ****less... When I was 15 the dr said "eh they got cures for that stuff now.... youll be fine.... might even fight it off" what a quack. Like I said I have had it 20 years now and my viral load is 2.5 million (dont know if thats good or bad.... sounds way awful) also what is genome #2? someone told me thats the easiest one to cure but does more damage per capita then the other 6 (really? is there 6 other types of this silent killer)?

Tig · Admin

A biopsy to diagnose fibrosis isn't always needed. They can do what's called a Fibroscan (ultrasound procedure) in a matter of minutes if there is a facility near you that does them. Do you have a doctor that is currently available to discuss these issues?

Tig

Tig · Admin

Hey Robin,

i forgot to mention that your avatar with the Union Pacific train sign reminds me of my hometown, Spokane, WA. I miss the sounds of the trains, we don't have any down here in this section of Florida. Thanks for the memories!

Tig

Trainhopper · Senior Member

well, the funny thing is... I have never had a biopsy. my doctors dont seem to think its hepatic encephalopathy (prolly spelled that wrong) but I know it has to be.. My liver function is well fair to midland. but my ammonia wont drop below 20. constant headaches.... at my worst point it was a 57! so i think I have it but the drs not so much. my live enz are decent no jaundice (ever) but I can feel the swelling in my belly. if I bend at the waist too long it will bring all the symptoms on. they wont put me on the list until they poke me with a biopsy...

Tig · Admin

Hi Robin,

Welcome to the forum from me too! I have to agree with ISIS, it smells highly of a scam. If you research it, it's only been studied by oriental herbologists and Chinese medicine "specialists". There are no references from any medical studies that supports any proof of legitimacy. There are several reports of the various uses of some components that have delivered some very undesirable results. Negative cardiac effects and some instances where improper dose/use of the nattokinases that caused cerebral ischemic attacks (strokes). The data that's available is scarce and that bothers me and it should anyone considering its use. There is generally one reason why you don't see any bonafide supporting studies from western medical facilities and major pharmaceutical manufacturers, it doesn't work. Any true medication must be approved by the FDA in the US, anything that isn't is generally passed off as a supplement, which isn't controlled. We've seen a lot of discussion on the use of supplementation to control HCV and medical science simply can't support its benefit. Some forms of supplementation can actually cause harm if taken while going through the current treatment protocols. There is a lot of unsupported information being offered for these magic supplements. Honestly, if they really were any good, you'd have heard about all the success stories by now and the truth is, you haven't heard anything because it doesn't work.

Im glad you found us and we're here to talk and help you any way we can. There are some very nice, and knowledgeable people here. Nobody is out to mess with you, only help if possible. I hope you stick around, it's a great place and we will do our best to provide you with info you need! Good luck...

Tig

Isiscat2011 · Guru

P.S. We do have other members here who take Lactulose, and plenty of cirrhotics, as well as just a great deal of support and good information. So, don't go anywhere. Well, you can leave your computer screen if you want, but be sure to come back. :)

Isiscat2011 · Guru

Welcome Trainhopper:

Not to worry; no dicks here. It sounds like a scam to me. The only way to prevent your fibrosis from getting worse is to stop what is causing it: namely HCV. Are you considering tx?

It sounds like you have decompensated cirrhosis. I know I am stating the obvious since you probably are aware of that. There is no magic cure for that. Get rid of the HCV to begin with.

Trainhopper · Senior Member

Hi my name is Robin and I have had hep c for almost 20 years. I was a street kid growing up so the only life I had been exposed to was a tragic one. To be honest when I first contracted it I kind of laughed it off. Hell... the old man who lived under the bride next to us said he'd had it since the early 70's. He was a drunk... Anyway I laughed off the hep. I continued down that destructive road until just about 2 years ago. I contracted the "c" from i.v. drug use and "living my bull**** dream" Well, now I have a viral load of 2 mil or so (I mean really... who keeps track that high up) my liver is shot to hell... And I am starting the first stages of hepatic encephalopathy ... my muscles ache like no ones business... Any way I saw an add today for some home treatment of fibrosis. "bio fibrin". So after a few hours of not searching very hard all I found on it was mostly by the company who sales it. So.... My question is... Has anyone here tried it? And if so what did it do? How long before you saw results? Again its getting dire for me as my liver swells daily and Lactulose really sucks. So please can someone help me out here? Oh by the way I am new to the whole forum thing and telling anyone who isnt indirect contact with me of my "c". This is ALL new to me... So if I posted in the wrong forum for this... dont be a dick to me... I just want answers

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