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Heptitas C
I have been having elevated live enzymes for almost two years. Liver biopsy and multiple tests with no resolve. I recently changed my PCP. Out of curiosity he ran a Hep panel which I have had numerous times come out neg. This time is was positive for Hep C. I am so confused. I do have two other autoimmune diseases and thought maybe this was an indication that I was developing Autoimmune Hepatitis. I have a specialist I have been seeing since my enzymes started rising and I plan on taking these test results to his office and making an appointment. My PCP is running further tests but tried to tell me that it didn't matter because I was contagious and had the active virus. I am at a loss. I don't understand how in the world I would have came in contact with this virus while I have been in and out of the doctors offices for my liver problems. I used to be a Respiratory Therapist and have also worked in and around patients that have had Hep C but that was over 10 years ago. I know how to protect myself and use precautions. I don't do drugs, haven't had a blood transfusion and me and my husband have been happily married for 24 years. Let me throw out there that he was tested after my results came back and he is neg. I'm so upset and just devastated.
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Wow, I'm so glad that it did turn out to be a false positive, but you are still left with a real puzzle. Your liver enzymes are not really horrible but are absolutely high enough for concern, so this is a puzzle that really needs to be worked out. Elevated enzymes are released by the liver when it is under duress, so its important to find out what is causing the elevation. If your current doctors seem at some point to be giving up on the solution, I hope you will then go to another hepatologist for a second opinion. You don't want to ignore that warning sign. Best wishes!
I agree, that is very good information posted by Maybe. Thanks Maybe? Maybe thanks? It sounds weird either way. For Healmybody, I want to say one more time that I really hope you can see a different doctor, at least for a second opinion. I'm sure I don't have the entire picture, but what I do have makes me really suspect that your doctor may not be up to diagnosing your problem, and I definitely think this problem needs to be clearly identified. Your numbers do worry me and they are not something that should be taken too lightly. Lyme disease sounds like a distinct possibility, but there may be other possibilities as well, including the possibility of autoimmune hepatitis. Most PCPs are not going to be able to adequately diagnose and treat any form of hepatitis, and I would recommend that this puzzle be given over to a specialist, preferably a hepatologist, but a gastroenterologist would be a big improvement over a PCP. Keep us posted and let us know how the puzzle is solved.
WOW that is some great information. I usually went with no rash no problem. Now I am thinking that isn't always the case. I don't recall being bitten by a tick but we do live in a wooded area and we pull them off of our dogs and horses through the summer. I usually keep our animals treated with flea and tick repellent. I guess I could have been bitten and not realize it. Hmmm definitely something to think about and add to my list of possible diagnoses. Thanks so much for your input Mark.
Here is a medical report that talks about hepatic manifestations of lyme disease:
Lyme Disease
Lyme disease is the most common vectorborne infection in the United States. It is caused by the spirochete Borrelia burgdorferi and is transmitted by Ixodid ticks (by Ixodes scapularis in northeastern and midwestern states and by Ixodes pacificus in western states), generally during the months of May through October.
Gastrointestinal manifestations. Gastrointestinal signs and symptoms are common in the early stages of Lyme disease. In a study of 314 patients with early Lyme disease, the predominant clinical findings included anorexia (in 23% of patients), nausea (in 17%), vomiting (in 10%), abdominal pain (in 8%), right upper-quadrant tenderness (in 8%), hepatomegaly (in 5%), splenomegaly (in 6%), and diarrhea (in 2%) [1]. Approximately 10% of the patients had symptoms that were suggestive of hepatitis. Subclinical hepatitis occurred in 27% of patients during the early stages of disease, according to one study [2]. Abnormal liver function test (LFT) findings generally indicate mild hepatocellular injury. Patients with early disseminated Lyme disease are more likely to have abnormal LFT findings than are patients with localized disease [3]. The results of 3 different studies that evaluated abnormal LFT findings in patients with Lyme disease are compared in table 2. However, elevations in aspartate aminotransferase and alanine aminotransferase levels may indicate Lyme disease—associated myositis in some patients and may not be related to underlying hepatic injury.
Table 2
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Table 2
Comparison of abnormal findings of liver function tests in patients with Lyme disease, as reported in 3 case series.
The prognosis for patients with Lyme disease—associated hepatic dysfunction is excellent with appropriate antimicrobial treatment [3]. LFT elevations usually decrease or resolve within 3 weeks after starting treatment. Hepatitis has not been reported as a late complication of the disease. In 1 case report, liver function abnormalities occurred late in the course of Lyme disease; however, recurrence of Lyme disease could not be distinguished from relapse in that case [4].
Pathogenesis and histopathologic findings. The pathogenesis of liver injury in patients with Lyme disease includes an interplay of direct hepatic invasion by the spirochete and immunologic responses. B. burgdorferi has been shown to penetrate through vascular endothelial cells in vitro [5], and it is this invasive capacity of the organism that is responsible for its tissue colonization in vivo [6]. Cellular and humoral immunologic mechanisms also contribute to the abnormal LFT findings commonly observed in the early stages of Lyme disease. Lyme disease can result in a variety of histologic abnormalities in the liver—in particular, sinusoidal infiltration by a mixed inflammatory infiltrate [4]. Kupffer cell hyperplasia, microvesicular fat, and hepatocyte ballooning are less commonly observed [7]. Spirochetes have been identified within hepatic sinusoids and parenchyma [4, 7]. This is most common in early, disseminated infection. Rarely, B. burgdorferi infection can result in a granulomatous hepatitis, which suggests that Lyme disease should be included in the differential diagnosis of febrile granulomatous hepatitis [8].
Conclusions. The diagnosis of Lyme disease should be considered for any patient from an area of endemicity who presents with a nonspecific illness and abnormal LFT findings, regardless of the presence of a rash. The abnormal LFT findings are usually mild and generally improve or resolve within 3 weeks after the initiation of appropriate therapy [3]
It is located here: http://cid.oxfordjournals.org/content/34/9/1206.long
It also talks about other vector related illnesses, but lyme is by far the most common...Mark
Lyme Disease
Lyme disease is the most common vectorborne infection in the United States. It is caused by the spirochete Borrelia burgdorferi and is transmitted by Ixodid ticks (by Ixodes scapularis in northeastern and midwestern states and by Ixodes pacificus in western states), generally during the months of May through October.
Gastrointestinal manifestations. Gastrointestinal signs and symptoms are common in the early stages of Lyme disease. In a study of 314 patients with early Lyme disease, the predominant clinical findings included anorexia (in 23% of patients), nausea (in 17%), vomiting (in 10%), abdominal pain (in 8%), right upper-quadrant tenderness (in 8%), hepatomegaly (in 5%), splenomegaly (in 6%), and diarrhea (in 2%) [1]. Approximately 10% of the patients had symptoms that were suggestive of hepatitis. Subclinical hepatitis occurred in 27% of patients during the early stages of disease, according to one study [2]. Abnormal liver function test (LFT) findings generally indicate mild hepatocellular injury. Patients with early disseminated Lyme disease are more likely to have abnormal LFT findings than are patients with localized disease [3]. The results of 3 different studies that evaluated abnormal LFT findings in patients with Lyme disease are compared in table 2. However, elevations in aspartate aminotransferase and alanine aminotransferase levels may indicate Lyme disease—associated myositis in some patients and may not be related to underlying hepatic injury.
Table 2
View larger version:
In this page
In a new window
Download as PowerPoint Slide
Table 2
Comparison of abnormal findings of liver function tests in patients with Lyme disease, as reported in 3 case series.
The prognosis for patients with Lyme disease—associated hepatic dysfunction is excellent with appropriate antimicrobial treatment [3]. LFT elevations usually decrease or resolve within 3 weeks after starting treatment. Hepatitis has not been reported as a late complication of the disease. In 1 case report, liver function abnormalities occurred late in the course of Lyme disease; however, recurrence of Lyme disease could not be distinguished from relapse in that case [4].
Pathogenesis and histopathologic findings. The pathogenesis of liver injury in patients with Lyme disease includes an interplay of direct hepatic invasion by the spirochete and immunologic responses. B. burgdorferi has been shown to penetrate through vascular endothelial cells in vitro [5], and it is this invasive capacity of the organism that is responsible for its tissue colonization in vivo [6]. Cellular and humoral immunologic mechanisms also contribute to the abnormal LFT findings commonly observed in the early stages of Lyme disease. Lyme disease can result in a variety of histologic abnormalities in the liver—in particular, sinusoidal infiltration by a mixed inflammatory infiltrate [4]. Kupffer cell hyperplasia, microvesicular fat, and hepatocyte ballooning are less commonly observed [7]. Spirochetes have been identified within hepatic sinusoids and parenchyma [4, 7]. This is most common in early, disseminated infection. Rarely, B. burgdorferi infection can result in a granulomatous hepatitis, which suggests that Lyme disease should be included in the differential diagnosis of febrile granulomatous hepatitis [8].
Conclusions. The diagnosis of Lyme disease should be considered for any patient from an area of endemicity who presents with a nonspecific illness and abnormal LFT findings, regardless of the presence of a rash. The abnormal LFT findings are usually mild and generally improve or resolve within 3 weeks after the initiation of appropriate therapy [3]
It is located here: http://cid.oxfordjournals.org/content/34/9/1206.long
It also talks about other vector related illnesses, but lyme is by far the most common...Mark
I try not to take anything at all for fear of hurting my liver. I am only on Vit D prescribed by my doc. One pill a week and I took my 4th one today. My Vit D is very low and my calcium is high so I suggest to be checked for hyperparathyroidism. Had my blood took at 4pm and it was 62 when anything over 65 is high. I asked to have it checked early in the morning to be more accurate but doc said he was only doing a screening and it didn't matter the time of day. More on my blood work....bun/creatinine ratio is high at 31, prealbumin is 17.
I haven't been tested for Lyme disease. I will suggest that.
There is absolutely no need to retest if you've tested negative by PCR. Retesting is usually done in six months to confirm a negative antibody test, but this is not necessary for a negative HCV PCR test.
I'm not an expert on genetic testing, but I think the TT results are most common in those of African-American descent, but are not exclusive to them. I've never read anything at all about these genes having any significance in overcoming diseases other than HCV. That doesn't mean they do or don't, just that I haven't read about it. My guess is that it would apply only to HCV or perhaps a few other very genetically similar viruses, but not most illnesses.
I would suggest that you get another specialist involved in your case, at least for a second opinion, and if they seem to have better ideas then maybe you can switch your care to them. It seems that your current physician is having difficulty thinking beyond HCV, even after getting negative results, and your liver enzymes are high enough that it seems pretty important to discover the cause. Those are not just little minor elevations you have. Have they gone carefully through every medication and every dietary supplement you are taking?
I'm not an expert on genetic testing, but I think the TT results are most common in those of African-American descent, but are not exclusive to them. I've never read anything at all about these genes having any significance in overcoming diseases other than HCV. That doesn't mean they do or don't, just that I haven't read about it. My guess is that it would apply only to HCV or perhaps a few other very genetically similar viruses, but not most illnesses.
I would suggest that you get another specialist involved in your case, at least for a second opinion, and if they seem to have better ideas then maybe you can switch your care to them. It seems that your current physician is having difficulty thinking beyond HCV, even after getting negative results, and your liver enzymes are high enough that it seems pretty important to discover the cause. Those are not just little minor elevations you have. Have they gone carefully through every medication and every dietary supplement you are taking?
Have they checked you for lyme disease? I saw a program on it where a woman had similar problems and after several years a doc thought of this and it was. Just an idea...Mark
I'm not of African American decent though. My grandmother was a descendent of the Indian tribe Blackfoot. She was 50% Indian if I am getting that right which made my dad 25% and me well not as much. So if my results came back as TT does that mean I have a worse chance for fighting any disease or just the Hep C? My doctor is still saying he thinks I may have came in contact with this disease at some point in my life. He even suggested that we repeat the blood work again in 6 months. ERRR why would he want to do that is all of these tests indicate I do not have it? I'm starting to become more frustrated because he needs to be focusing on my other issues instead of chasing ghosts that are clearly not there.
It is common to order additional genetic testing when HCV is confirmed (or strongly suspected, as your doctor suspected it in you). TT is one of three possible expression in a particular gene we all have, and it can help with treatment expectations. Here's a better explanation:
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IL-28B Genotypic Testing: Interleukin-28B (IL-28B) is a human gene that plays a role in the immune system's defense against certain viruses. Certain inherited changes, or polymorphisms, in the gene have been linked to higher (or lower) cure rates in people with HCV genotype 1 using one of the most important drugs used to treat the virus: Pegylated interferon alpha.
Since everyone gets a gene from each parent, a person can have an IL28B "CC", "CT" or "TT" genotype. People with the IL28B CC genotype are more likely to be cured by HCV treatment than people with the TT genotype; cure rates among people with the CT genotype fall somewhere in between. Apparently, the IL28B TT genotype is common among African Americans; it clearly contributes to lower cure rates
Knowing this information can be helpful to you and your doctor when discussing treatment options, especially with new medications that aren't affected by the IL-28B gene becoming available.
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The above quote was taken from http://www.hepmag.com/articles/2512_18753.shtml.
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IL-28B Genotypic Testing: Interleukin-28B (IL-28B) is a human gene that plays a role in the immune system's defense against certain viruses. Certain inherited changes, or polymorphisms, in the gene have been linked to higher (or lower) cure rates in people with HCV genotype 1 using one of the most important drugs used to treat the virus: Pegylated interferon alpha.
Since everyone gets a gene from each parent, a person can have an IL28B "CC", "CT" or "TT" genotype. People with the IL28B CC genotype are more likely to be cured by HCV treatment than people with the TT genotype; cure rates among people with the CT genotype fall somewhere in between. Apparently, the IL28B TT genotype is common among African Americans; it clearly contributes to lower cure rates
Knowing this information can be helpful to you and your doctor when discussing treatment options, especially with new medications that aren't affected by the IL-28B gene becoming available.
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The above quote was taken from http://www.hepmag.com/articles/2512_18753.shtml.
Random question. The test they do for genotyping I think, what does TT results mean?
It's called Acutane. I remembered.
ALT 220
AST 198
I have been told by people that these aren't that high but my doctors and specialist seem like it's awful. I have lost weight too and they haven't came down any, actually they went up. That is what has my specialist concerned. He said they should have went down when I started loosing weight and eating right. When I started the weight loss I was only 60 pounds over weight so it's not like I was obesely fat. They have checked me for Wilson's Disease, Alpha 1 antyripsin, Hepatitis lol, Weikes Disease, and a couple others I can't think of right now. The live biopsy didn't show any signs of scarring at this point. I can remember about 10 years ago my Dermatologist put me on that strong Acne medicine that you take for 6 months and they have to monitor your labs every month. I made it to the second month and they had to take me off of it because my enzymes shot up on them. I have no idea if this is because of that but I wouldn't think so.
AST 198
I have been told by people that these aren't that high but my doctors and specialist seem like it's awful. I have lost weight too and they haven't came down any, actually they went up. That is what has my specialist concerned. He said they should have went down when I started loosing weight and eating right. When I started the weight loss I was only 60 pounds over weight so it's not like I was obesely fat. They have checked me for Wilson's Disease, Alpha 1 antyripsin, Hepatitis lol, Weikes Disease, and a couple others I can't think of right now. The live biopsy didn't show any signs of scarring at this point. I can remember about 10 years ago my Dermatologist put me on that strong Acne medicine that you take for 6 months and they have to monitor your labs every month. I made it to the second month and they had to take me off of it because my enzymes shot up on them. I have no idea if this is because of that but I wouldn't think so.
How elevated are the enzymes? They give you test results?
So happy to hear the good news. Congrats to you, it must be like waking up from a nightmare. Have fun and enjoy your life as much as you can.
Thanks Will. My doctor had me almost convinced that I was positive. I can only imagine what people feel when they are diagnosed with a terminal illness. I know this isn't as bad as that and can be cured now a days but it still freaked me and my family out. I can't wait to go to my next appointment to get an apology but you know how doctors are. He probably will not say a word. Will see I guess. I LOVE THIS SITE!!!
Just chiming in to tell you you do not have HCV
It would seem like given the first AB test that it was a "false positive" which happens sometimes.
Enjoy....
Will
It would seem like given the first AB test that it was a "false positive" which happens sometimes.
Enjoy....
Will
I received my labs back today. I am so happy, I think.
Hep C Virus Ab was 0.1
IL28B Polymorphism Genotype was nothing to report.
HCV RT-PCR, Quant (non-Graph) Hepatitis C Quantitation was HCV Not Detected
HCV Genotyping Non Reflex was nothing to report
How do these test look to you?
Hep C Virus Ab was 0.1
IL28B Polymorphism Genotype was nothing to report.
HCV RT-PCR, Quant (non-Graph) Hepatitis C Quantitation was HCV Not Detected
HCV Genotyping Non Reflex was nothing to report
How do these test look to you?
Thank you so much for your kind words. It has been scary to say the least. But I did get good news.
Hi, I am so sorry, I know it is shocking. I had a similar experience. Back in the 90's my liver enzymes were slightly elevated, I was tested 3 times and the test came back negative every time. I thought I was ok until 2007 when platelets fell, bleeding under skin. Then I was dx with HCV and cirrhosis.
The doctor at the time said that the tests back then were not as sensitive as the new ones. It is very upsetting to find out you have been living with this, trying to find and answer and you received the wrong one.
I hope you can find the help you need.
It does matter, I would be very upset
Dee
The doctor at the time said that the tests back then were not as sensitive as the new ones. It is very upsetting to find out you have been living with this, trying to find and answer and you received the wrong one.
I hope you can find the help you need.
It does matter, I would be very upset
Dee
The test that was positive was Hep C virus Ab 11.0 s/co ratio 0.0 - 0.9
I asked to have the RNA test done.
I asked to have the RNA test done.
Welcome to the forum! I'm so sorry about this bad news you've received, but there is still some chance that its a false alarm. It would help if you could post exactly which tests you've had and exactly what the results say. The most common (and cheapest) HCV test is one that looks for antibodies. It can only say that you've been exposed at some time in your life, not whether you have the virus or are contagious. If your numerical score on this test is in the lower end of the range, it may be a false positive, which is more likely if you've recently had some other virus, such as flu. If it is really positive you still might not have the virus because about 20% of those exposed are able to fight it off with just their own immune system. To find out for sure you will need to have an HCV PCR test, which looks for actual viral RNA in your blood.
If you do have the active virus, try not to fret too much over how you acquired it. Many people are never able to figure that one out, as it can occasionally be from really obscure sources. Instead, focus on getting rid of it. Recent advances have made thus virus very beat-able. Treatments depend on lots of factors like which genotype you have, how much it has affected your liver so far, and what other health problems you have, so I can't go into details in treatment, but it is definitely a curable virus now in almost all cases. Best wishes for yours to not even be real!
If you do have the active virus, try not to fret too much over how you acquired it. Many people are never able to figure that one out, as it can occasionally be from really obscure sources. Instead, focus on getting rid of it. Recent advances have made thus virus very beat-able. Treatments depend on lots of factors like which genotype you have, how much it has affected your liver so far, and what other health problems you have, so I can't go into details in treatment, but it is definitely a curable virus now in almost all cases. Best wishes for yours to not even be real!
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