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Author Topic: Connection  (Read 6881 times)

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Offline whyme

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Connection
« on: January 10, 2016, 01:27:24 am »
I entered a different forum and was told to get out and all my post removed.  I posted that in 2004 that the doctor said my antibody was positive for hep c from then on to 2014 my VL test never showed detectable.  I started tested my antibody again and it was negative. 

I have had elevated ALT and AST and my diagnosis is NASH (Non-Alcoholic SteatoHepatitis).  I am still dealing with liver issues.

Can I use the HepC treatments to clear up my liver disease.

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Connection
« Reply #1 on: January 10, 2016, 03:03:28 am »
Hep c treatments are to eridacte the hep c virus only. If you don't have the hep c virus there is no reason to take a medicine to cure a virus you do not have.

About 25% of people who were exposed to hep c are able to beat the virus on their own so that could be one way you would test positive for antibodies but test negative for the virus itself. Testing negative for the virus means you do not have hep c.

Hep c antibodies are not the hep c virus they are made by your own immune system when it tries to fight the virus.

You should follow the recommendations of your hepatologist or gastroenterologist.

Here is a link about NASH and an excerpt about causes of NASH

http://www.niddk.nih.gov/health-information/health-topics/liver-disease/nonalcoholic-steatohepatitis/Pages/facts.aspx

Causes

Although NASH has become more common, its underlying cause is still not clear. It most often occurs in persons who are middle-aged and overweight or obese. Many patients with NASH have elevated blood lipids, such as cholesterol and triglycerides, and many have diabetes or prediabetes, but not every obese person or every patient with diabetes has NASH. Furthermore, some patients with NASH are not obese, do not have diabetes, and have normal blood cholesterol and lipids. NASH can occur without any apparent risk factor and can even occur in children. Thus, NASH is not simply obesity that affects the liver.

While the underlying reason for the liver injury that causes NASH is not known, several factors are possible candidates:

insulin resistance
release of toxic inflammatory proteins by fat cells (cytokines)
oxidative stress (deterioration of cells) inside liver cells

Treatment

Currently, no specific therapies for NASH exist. The most important recommendations given to persons with this disease are to

reduce their weight (if obese or overweight)
follow a balanced and healthy diet
increase physical activity
avoid alcohol
avoid unnecessary medications
These are standard recommendations, but they can make a difference. They are also helpful for other conditions, such as heart disease, diabetes, and high cholesterol.

A major attempt should be made to lower body weight into the healthy range. Weight loss can improve liver tests in patients with NASH and may reverse the disease to some extent. Research at present is focusing on how much weight loss improves the liver in patients with NASH and whether this improvement lasts over a period of time.

Good luck
« Last Edit: January 10, 2016, 03:08:10 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline whyme

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Re: Connection
« Reply #2 on: January 11, 2016, 12:32:39 pm »
I believe firmly that there is a link between Hep C and NASH. 

I am sure I contracted Hep C in late 2000 from at risk activity of receiving oral sex from drug addict on street.  I think heroine was her drug of choice and blood from her mouth from open sores or cuts entered my urethra.  I have no tattoos, never injected any drugs, never shared razors toothbrushes and was not born with it.

When I took notice of symptoms dark urine, pale stool, loss of appetite. I began going to primary doctor who was somewhat aged, and diagnosis was Irritable Bowel Syndrome.  Lactose Intolerance etc.  It was not until 2004 when a younger doctor said well lets do a HIV/HEP A/B/C screening.  Hep C antibodies came back positive, mind you this is 4 years after exposure, so I did not cure spontaneously.

I have never had detectable Viral Load but ALT AST are elevated, fatigue constant, insomnia at night, muscle wasting is visible, and pain in upper right quadrant is present. 

How do I get to now having NASH from first being exposed to Hep C if there is not a connection?

Offline Lynn K

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Re: Connection
« Reply #3 on: January 11, 2016, 02:34:21 pm »
Normally once exposed to hep c you will test positive for the antibodies for the rest of your life. If you ever tested positive for the antibodies and later test negative for the antibodies as you said happened it could be possible the original was a false positive or maybe it could be a rare happen stance that you became hep c antibody negative somehow.

Hep c antibodies are not the virus they are from you. Your body made them to fight hep c or hep c exposure just as if you either had or were vaccinated against measels you have measels antibodies they are a part of your own immune system.

In any event you do not currently have hep c if you ever did have it it takes years for hep c to cause liver damage.

As the link I sent said principally being overweight is a caus of NASH although people can have NASH and be normal weight and have NASH for unknown reasons. But even if hep c that maybe you had for a brief period and maybe you never had hep c could have this connection you are looking for if that is what started your NASH treating hep c a virus you don't have now would do nothing as far as the NASH goes.

There is a tendency to develop fat cells in the liver with hep c if infected for decades but if you did contract hep c and fight it off you were only infected for months if you don't self cure hep c in a relatively brief time you won't cure on your own at all and will have a chronic infection that does require treatment.

The new meds for hep c target the reproductive cycle of the hep c virus preventing the virus ability to reproduce so it dies off. But you have no virus to treat so there is no reason to take a medicine for an viral infection you do not have.

With all that said even if your possible brief infection with hep c somehow caused you to develop NASH it doesn't matter now really since you don't have hep c currently there is nothing to be done on that front. All you can do is follow your doctor's advice on living with and treating your NASH.

The best thing you can do is see your hepatologist or gastroenterologist and follow their recommendations.

Good luck
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline lporterrn

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    • LucindaPorterRN
Re: Connection
« Reply #4 on: January 11, 2016, 02:44:25 pm »
NASH (and NAFLD) are VERY common, and on the way to being the most common liver diseases in the U.S., and overtaking hep C for the most common reasons for liver transplants. We are even seeing this in children.

As for your symptoms, the liver disease symptoms are similar, regardless of what is causing the problem - a virus or a syndrome or a toxin or an autoimmune disease. The fact that your viral load is undetectable rules out hep C. In short, your exposure is likely nothing more than coincidence. It's quite possible that you had NASH first, and the hep C exposure provided the opportunity to discover you had NASH.

Also, the hep C antibodies coming back positive 4 years after the exposure does not mean that you didn't cure spontaneously. Most people don't lose HCV antibody for at least 20 or more years (if at all). It even brings up the question that your exposure predated the time you suspect you were infected.

Given the remote possibility that you would have contracted HCV from oral sex, perhaps the antibody test in 2004 was false...

I assume your doctor has advised you on your options re NASH. NASH is nothing to fool around with - left unheeded, your liver can get quite sick.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Connection
« Reply #5 on: January 11, 2016, 09:19:40 pm »
Just to address your specific comments:

*I believe firmly that there is a link between Hep C and NASH.*

I saw little in the scientific material I found on line to confirm that belief although Hep c over many years can contribute to fatty liver. Both hep C and NASH are 2 separate medical conditions.

*I am sure I contracted Hep C in late 2000 .....*

I don't think you had hep c only an exposure or possibly you cleared on your own. Hep c is not considered a sexually transmitted disease. Although not unheard of it is relatively low risk. There are a number of people who have no idea how they became infected.

*When I took notice of symptoms dark urine, pale stool, loss of appetite.*

Most people with hep c have no symptoms for many years this could have been from you beginning to develop symptoms of NASH or some other cause.

*It was not until 2004 when a younger doctor said well lets do a HIV/HEP A/B/C screening.  Hep C antibodies came back positive, mind you this is 4 years after exposure, so I did not cure spontaneously.*

Antibodies are not the virus. Only testing positive on the test for the virus itself HCV RNA by PCR with a detected result means you have hep c. Many people have positive antibody tests but are not infected with hep c

*I have never had detectable Viral Load but ALT AST are elevated, fatigue constant, insomnia at night, muscle wasting is visible, and pain in upper right quadrant is present.*

Muscle wasting could be a symptom of late stage cirrhosis. This is not a symptom of hep c. As above most people with hep c have no symptoms for decades until they have significant liver damage then the symptoms are from liver disease. While some do develop extra-hepatic symptoms from long term hep c infection such as cryoglobulinemia with symptoms of joint pain.

Bottom line if you don't have a detectable viral load you do not have Hep C.

*How do I get to now having NASH from first being exposed to Hep C if there is not a connection?*

Being exposed is not the same as carrying the hep c virus for years. You are not detected and don't have hep c so there can be no connection. As Lucinda said "NASH (and NAFLD) are VERY common" so it is likely that you have NASH for some other reason.

But in the larger picture it does not matter how you came to have NASH it only matters that you follow your doctors recommendations to treat your condition.

Some of the people here in the forum who have hep c and no idea why are frustrated trying to understand what happened. I can totally understand your trying to find a cause it is human nature to find out why.

But you likely will never know why the important thing is where do you go from here...

Good luck
« Last Edit: January 13, 2016, 12:20:59 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Kate101

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  • Posts: 18
Re: Connection
« Reply #6 on: January 30, 2016, 05:31:56 am »
I have not heard of NASH before and I have no idea how I got Hep C. The only risky behavior I had during those years; I loved to party in the 80's; very fond/never addicted to snorting cocaine in the party scene. During that period and the "nasty 100 dollar bills were rolled up and passed around the room to show off with your gold chains and dance moves. Nose bleeds were the norm after those long nights. We did not know any better back then. Lots of unsavory characters in the game. The only other thing I can think of is; I was a privileged child and lived at the dentist and orthodontist office prior to the enclave? they use today. I am always asked how I got it by Doctors and I reply with the first scenario. I cant tell you how many times they just look at me like I was a needle user, morally loose, and have been called a liar to my face. I would bet the dirty dollar bills used to sniff it was my culprit. Anyone else?

Kate

Offline FutureThinker

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  • Onward and upward!
Re: Connection
« Reply #7 on: January 30, 2016, 05:46:01 pm »
Lynn & Lucinda -- excellent information for whyme and I do hope this helps with the questions. I'm not familiar with NASH,either.

Kate101: You hit a nerve with your comment that you've been called a liar to your face re: how you contracted HCV. I am sick and tired of these supposed "professionals" we have to deal with in getting treatment for this nightmare of a disease, who just don't know how to properly deal with this diagnosis well for the most part, or don't have the time. Maybe it's both. You can barely talk to your medical provider w/o feeling uncomfortable, so why would we try to talk to anyone about our situation? It's very unnecessary and makes this a very, very lonely place when what we need is a lot of support and understanding, not weird looks and tone of voice from our doctors. My background is in healthcare and I would NEVER look or talk to someone who told me they had HCV the way I've been addressed at times. I've had patients in the past that were + for HBV &/or HIV, I didn't flinch, just continued my discussion/questioning to get a full history..... NOT PASS JUDGEMENT. I hope the medical schools/programs are doing a better job at training in empathy, as it seems to be lacking more often than not these days. Thanks for letting me get that off my chest and I understand where you're coming from. FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline lporterrn

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Re: Connection
« Reply #8 on: January 31, 2016, 06:11:22 pm »
Just thought I'd add that HEP's new website has added NASH to its list of info it provides. It will be adding more as time goes on. https://www.hepmag.com/basics/nash-nonalcoholic-steatohepatitis-basics

I second everything FutureThinker said. I've come to view stigmatization much like other prejudices  - unnecessary and unkind, and runs deep and unconsciously. As for medical school, I don't know if you can teach everyone to be compassionate, but I do know some schools do an excellent job of confronting bias.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline FutureThinker

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  • Onward and upward!
Re: Connection
« Reply #9 on: February 01, 2016, 11:08:47 am »
Lucinda, you are right, not all docs are poor communicators.  I've worked with many great ones professionally and personally, but I seem to have come across more of the "less competent" ones with this particular medical issue. I give Kim Goldberg huge kudos in exposing this disease in her book and I hope some better understanding can be possible as more info is made available to the public. FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline lporterrn

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  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Connection
« Reply #10 on: February 01, 2016, 11:12:16 am »
I think I am in a bubble since the docs and nurses I am working with are putting their hearts into this work. But when I am a patient, I encounter huge stigmatization. It is heart breaking.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline FutureThinker

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  • Posts: 711
  • Onward and upward!
Re: Connection
« Reply #11 on: February 01, 2016, 11:33:08 am »
That's why whenever I get my normal energy level back, I am going to get involved somehow in helping this population get thru this more easily than it's been for me! Even if it's writing appeal letters for patients, I'm going to get involved someway. Just need to get rid of the virus first! This is going to be the year........ FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

 


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