POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: aztecan on October 10, 2007, 11:41:02 pm
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I visited the doc today to find out about a couple of people and, while there, was given some news about the outcome of my CT scan.
The doc handed me a print out from the doctor who examined the test results. It states:
"Impression
Fatty infiltration of liver. Otherwise, essentially normal CT scan of the abdomen."
It noted, in more detail that all the organs, save the liver, look normal.
The doc also gave me a printout that talks about this situation. It even has a name.
Nonalcoholic Steatohepatitis
Sounds interesting, doesn't it?
"Nonalcoholic steatohepatitis, or NASH, is a common, often 'silent' liver disease. It resembles alcoholic liver disease, but occurs in people who drink little or no alcohol. . . . NASH can be severe and lead to cirrhosis, in which the liver is permanently damaged and scarred and no longer able to work properly."
I find it interesting the printout says NASH is common, but then goes on to say only 2 to 5 percent of Americans are affected by it. That doesn't sound that common to me, but what do I know.
Apparently, the first symptom of this is elevated liver tests (ALT or AST), which were noted in my last set of labs.
Then, when X-rays or CT scans show fat in the liver, which I also have, they suspect NASH.
I am not sure what the next step for this is. Well, that isn't actually true. The next logical step is a biopsy of my liver.
Whether the doc thinks this is necessary or not, I don't know because I didn't have time to talk to him about it today.
But, I will. I want to make sure I understand his suspicions before I worry about them sticking a needle through my abdomen and into my liver.
They still don't know why I have the pain in my gut. Apparently, there is nothing showing up that would cause it.
I guess its back to the drawing board on that issue.
I wonder if I need to lose weight? I read that most people with NASH are obese, so maybe all this weight I've gained in recent months is the culprit.
Of course, I also read that even people who aren't obese get it. Even children get it. They really don't know what causes it.
Just my luck to get something they don't know much about.
Oh well, I guess I'll have something to talk to the doc about now.
HUGS,
Mark
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Hi Mark~
I have never heard of NASH, either! It shows up in people who don't drink? I'm curious to know if HIV meds may have led to this. Could it be from lipo in the belly? I can't remember if that has been a problem for you or not.
You seem to be handling this news pretty well. I know I would be asking a zillion questions, so I'm glad to hear that you'll be discussing it more with your doc. Please keep us informed here in the Forums. I agree, its amazing what stuff turns up sometimes.
Oh the life of an HIVer! Hang in there! :-* You have 50 more years to go, mister!
~Cindy
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Marc,
Damn, I never heard of Nash either. You looked great when I saw you.
What kind of pains are you having in your gut? Is it on the right side?
Let's hope it's nothing. My Mom has had mysterious liver problems, as have I...I had a biopsy once. I had pain in my side, and nothing serious ever came of it.
I hope it's nothing serious, like it was for my mom, and myself!
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Sorry to hear your news.
I am sure I came across this term earlier this year when I was researching why my doctors where flying into such a flap over my suddenly haywire liver enzyme levels .. and if my memory serves me right, steatohepatitis is a progression of ‘fatty liver’ (steatorrhoeic hepatosis / steatosis hepatis) and is also associated with lactic acidosis, which is not an unheard of side effect of several HIV drugs (nukes seem to be the main culprits .. and it is, I believe, one of the reasons that close monitoring of liver enzymes is advised when starting treatment with certain drugs).
As I recall, it is diagnosed as non-alcoholic if you consume less than 2 alcoholic drinks a day, and alcoholic if you drink more.
In my case, after I had accepted that I was in for a change of drugs and regime of intensive diet and exercise, it turned out to be a flap about nothing at all (bone marrow produces exactly the same enzymes and I had recently suffered a traumatic amputation in an accident, so it was just a natural part of the body’s healing process).
Hang on in there, I am sure they will get to the bottom of it and set you up for the next challenge.
HUGS,
Mark x
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Hi smiler
I'm sorry to hear that you are having to go through all this.
How is your Cholesterol and Triglycerides?
From what I remember there is only two ways this can go, one is that it could possibly heal on it's own, but to be honest, from what you have been going through and what you have said I don't think that's going to happen..not if they are talking about surgery..and two it can slowly get worse, and this can cause scarring of the liver leading to cirrhosis.
Losing weight can help to a degree...and if you do have high Cholesterol and TG's working on lowering them will help.
I hope the biopsy will show what's really going on and you can get treatment started ASAP if needed.
Thinking about you and sending you love.
Hugs
Jan :-*
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The following is from the Britsh Liver Trust’s website:
For NASH, no treatment has been proved to stop the inflammation. However, the outlook is usually good. Cirrhosis and serious liver problems do not develop in most cases. It is not clear why some people with NASH progress to cirrhosis. Probably the best ways to minimise the risk of developing serious liver problems are: slow weight reduction and exercise (if obese), a low fat diet, good control of diabetes (if diabetes is the cause). Also, it is best not to drink any alcohol, or only small amounts, to minimise this aggravating the condition.
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:(
I hope they can answer your questions without delay, Mark.
Here’s hoping for the best possible outcome!
Daniel
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Mark
Thanks for posting the results. When do you have an endoscopy planned?
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Mark, you poor guy..
I've never heard of NASH either (I thought it was a car! didn't we see one in S.F.?) You're in my thoughts and prayers honey.
Love,
Alan
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Mark,
I am sad to learn about this.
How are your lipids? and the pain you mentioned is it on the right side?
I'm the type of person that want to get it over and done with right away, but I would definitely make sure 100% that it is not something else, like you said "understand his suspicions before I worry about them sticking a needle through my abdomen and into my liver."
Please keep us updated.
Sending you all the healing energy I can with lots of big HUGS and kisses for you
Rich
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Hello Mark,
Sorry to hear that the tests did not come out favorably. I also, never heard of NASH. Learn something new everyday. You will have to keep us updated, as to what the doctor says is the next step.
Wishing you the best...
Hang in there Mark--------Ray
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Hey all, thanks for the support. It is appreciated.
The pain for those who inquired, is on the left, not the right. If it had been on the right, the doc probably would have been more panicky with the results of the CT scan.
I had never heard of NASH either, until now.
Alan you're right, we saw one at the car show in San Francisco. Remember, it had the delightful hound's tooth upholstery and was a "Valentine Red," which looked more pinkish to me.
But I digress.
Here are some links discussing NASH.
http://patients.uptodate.com/topic.asp?file=livr_dis/5305
http://digestive.niddk.nih.gov/ddiseases/pubs/nash/
Anyway, dropped by the doc's office today to see if I could get more info on NASH and what he thought the next step should be. One of the perks of being a rural case manager is you can barge in on the doc and he doesn't mind.
Unfortunately, he was off making his rounds.
I have done some research and found that about half of those with NASH suffer no ill effects from it. A very small number actually seem to improve over time and the rest find themselves with progressive liver problems.
I wish the doc had been a bit more forthcoming about what he thought I should next.
Is he going to want me to have a biopsy?
He may want me to go on a low-fat diet.
There is some experimental stuff mentioned in the printout. They include taking antioxidants or diabetes medicine. Not proven to be effective but it is being looked at.
I'll let you all know more when I find out more.
Oh, and Joel, I don't know when the endoscopy is going to happen. It will be pretty soon though, because I want to get to the bottom of this abdominal annoyance as soon as possible.
HUGS,
Mark
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Thinking of you.
Hal
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I remember you were on Crixivan for a long time,do you think this could be a side of that treatment? The drug just about killed me.
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Mark, Thinking of you and please let us know what the doctor suggests... sincerely, John
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HI Mark.
Sure don't like to hear this. ARen't you already on special diets due to your allergies to wheat? And to that you add a 'low fat' diet. I can't imagine a diet with even less fat than the one you're on now.
Good luck. I really, really hope it works itself out.
robert
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Hey Mark,
I meant to ask you this earlier, but I forgot. Are you still taking milk thistle ?
Thinking of ya-----Ray
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Hey all, thanks for the shoulders to cry on.
It will probably turn out to be nothing, I hope.
Jack, I seem to remember something about liver issues with Crix, but my memory is really sucky at the moment. I will look it up though.
Ray, I stopped taking the milk thistle a while back while we (my doc and I) investigated claims it might interfere with the metabolizing of the Reyataz. I just stated taking it again after my doc and I came to the conclusion that if milk thistle didn't bother the Crixivan, it probably won't bother the Reyataz.
I find it interesting how many similarities there are between Reyataz and Crixivan, including the kidney stone problems.
But, back to the issue at hand, I have decided to take the bull by the horns. I am replacing the fat in my diet with healthier fat, if that makes any sense.
I will stop eating real eggs in the morning and use either Egg Beaters or the store brand equivalent, alternated with scrambled tofu.
I also will restrict my red meat intake and, instead, include more fish and skinless, boneless chicken or turkey in my meals.
I will bake my own bread again, as I should have been anyway, and use low-fat ingredients rather than the high cholesterol stuff.
I also will replace my beloved butter with Smart Balance, which is supposed to reduce the cholesterol.
Lastly, I will be more regular about my workouts and increase the amount of cardio stuff I do, cycling for an hour rather than just a half hour or 45 minutes and increasing the number of laps I do in the pool (although I will play this one by ear.)
I have been rather lazy and slothful this summer, eating too many of the wrong foods and not getting the exercise I should. The only exception was in San Francisco when I did walk quite a bit.
None of the above is earth shattering news or some miracle cure. But, it makes me feel better to be proactive than to sit on my butt and wait for something to happen.
To wit, I went to the grocery today and spent nearly a C note on low fat yummies, including a new type fruit called white dragonfruit.
Wish me luck. I'll keep you all posted on how things go and what the doc says.
HUGS,
Mark
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Hi Mark~
I'm glad to hear about the proactive changes you're making. I have been diabetic since age 11 and Lord knows I eat junk a lot. But, its all in moderation, along with staying active to some extent.
So, I walked my dog briskly for a half hour today, and now my sugars are crashing, but I'll sleep good tonight!
I wish you luck in maintaining your healthy changes to your diet!
~Cindy
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Hi Mark,
Just chiming in to let you know you are in my thoughts. Change in diet will hopefully take care of the foie gras, not to mention improve greatly your general health.
Paolo
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Hey Mark!
Your challenges are certainly in my prayers.....I see the right people bringing you the best information that will ultimately lead to solving this dilemma! Perhaps you could invent a bumper sticker to read:
DASH THE NASH
On a more practical note, working on diet certainly could be a good thing...since you are a baker I will provide you with a fantastic low-fat recipe for carrot cake....in fact I am so worked up over it I am going to bake one today!!
Be well my friend!
Hugs back atcha!
Craig
RECIPE ATTACHMENT IS BELOW....
[attachment deleted by admin]
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Hi Mark.
Just a suggestion. Egg Beaters is expensive. When I realized it was just eggs without the yolks, I went back to buying the eggs and seperated the yolks out when I was baking. A yolkless omelet is delicious. If you compost, just add the yolks to the rest of the garbage. I give my yolks to the dogs. They love them.
robert
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Thinking of you also, Mark.
Sending good energies. (which is another way of saying, you are in my prayers)
Hugs back at ya,
Mike
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I haven't had the chance to talk to my doc yet. Between my schedule and his, it is difficult.
I did, however, speak with another doctor in Gallup, about two hours south of where I live. This doc is a really good internal medicine doc and very knowledgeable about HIV and its assorted side effects.
While he couldn't comment on my case specifically, he said non-alcoholic steatohepatitis is something being seen among Hi-fivers. While nobody can say what the definite cause is, he said it is most likely a result of the meds we take.
I did a bit of research and found that many of the nukes come with the caveat they may cause fatty liver.
There really aren't any changes I can make at this time.
I asked what I could do. His answer, not much. A low-fat diet may help, but probably won't reverse the situation that already exists. Even with the low-fat diet, it is very possible it could progress or, at the very least, remain the same as it is now.
So, I will work on the low-fat diet and exercise to try to keep the lipids in check and hope for the best., I will still talk to my doc about this to see what he says.
HUGS,
Mark
(Edited to add stuff about research.)
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Hi Mark,
I know that feeling of coming out of the doctors office with news you never expected.
I had an appt. and got my results back.
My liver viral load is sky high....They haven't said anything yet, due to doctors want to
do more testing ...
I do have hep c ...so I guess ill have to wait and see if they want a biospy..
When I lived in NYC, I went to a Doctor called Dr. Zhang..He is in the Gray bar building
on 34 and Lexington ave..
He treated me for 2 yrs with natural herbs, and my liver count was back to being normal.
Since I move to NJ about 4 yrs ago, I had stopped seeing this Dr.
He is one hell of a Liver Doctor.
He cured Naomi Judd of her hep c..
Being I have Hep C and hiv..my case is a bit more complicated..
Anyway..
Try this site.. www.dr-Zhang.com This will lead you to a forum all about the liver
and its many disease..
You can also post and he will reply to your questions....Good luck and I will be saying
a few prayers for you ...I hope this helps..
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Here ya go..Found the NASH site for you my friend.
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Q Is The Liver Disorder, NASH, on the Rise?
Are there any known causes or cures for NASH? I've heard that more people are getting it. Is that true?
A Answer (Published 3/29/2002)
I've seen only one case of NASH which stands for Non-Alcoholic Steatohepatitis, a once-rare liver problem, but I understand from my colleague, Qingcai Zhang, MD, a Chinese physician and hepatitis expert, that it is on the rise. In fact, some surveys estimate that NASH now affects as many as 23 percent of adult Americans and is the most common cause of elevation of liver enzymes on routine blood tests.
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NASH begins with deposits of fat in the liver. Exactly why this happens isn't clear, but it is linked to obesity and diabetes and appears to run in families. It typically affects older, overweight women, but it can occur among men, people of normal weight and even among children. Some cases are associated with the use of certain drugs, including tamoxifen used to treat breast cancer, the antibiotic tetracycline, as well as long-term use of high doses of steroids.
Although NASH causes no obvious symptoms, as fat gradually accumulates the liver becomes enlarged, which can lead to vague upper abdominal discomfort. The danger is that unchecked, NASH can lead to cirrhosis of the liver -- the replacement of normal liver tissue with nonfunctional scar tissue as a result of inflammation (hepatitis). It is now the most common cause of cirrhosis among people who are not alcoholics.
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The only treatment for NASH is to eliminate the cause which, in most cases, means losing weight or, if possible, switching off a drug that may be responsible. My patient was an overweight young man who did well once he lost weight, and Dr. Zhang says that among his patients, such lifestyle changes as a healthy weight-loss diet, exercise and herbal remedies reversed the symptoms and biochemical signs of NASH.
The herbal remedies that Dr. Zhang recommends include milk thistle (Silybum marianum) which stimulates regeneration of liver cells. He also treats his NASH patients with Schizandra, a Chinese medicine, and Ligustrin (Oleanolic acid), Capillaris (Artemisiae capillaris herba) and Crataegus (Crataegi Fructus).
By the way, foie gras, much loved by gourmets, is nothing other than livers of geese with NASH induced by forced overfeeding.
Andrew Weil, M.D.
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Mark...I'm sorry to hear this has come up, I hope you can tackle this issue and keep it in check and be around another 25-30 years- at least!!!
Be well dear man and keep us posted.
Jody