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Author Topic: Pain  (Read 6579 times)

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Offline whyme

  • Member
  • Posts: 6
Pain
« on: June 26, 2017, 11:53:26 pm »
I noticed some people with high ALT/AST numbers and detectable VL.  I was told I have antibodies to HEP C in 2004 but I have never had a detectable VL.  I have pain on right side of my abdomen.  I get terrible upset stomach and waste is diarrhea or odd shaped.  I recently had my liver biopsy doctor was convinced I had NASH and I told them it wasn't NASH over and over that it was Hep C. issues even with my und VL but the Dr. said I actually have a healthy liver with a little fat after biopsy, but the pain and distended abdomen.  I cant work due to fatigue, I get tired easily, I can do anything that requires any kind of stamina running sex working out. etc....Can anyone describe what the result of symptoms or how body reacts after treatment other that the und. VL.  I am convinced not only does treatment make VL und. in blood but it also has an effect on the liver where the virus lives and attacks.

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Pain
« Reply #1 on: June 27, 2017, 05:08:05 am »
I'm sorry, but your post seems to be a very reduced version of a much larger story.  I'm not even sure if you were treated for HepC, although it seems like you may have been.

First, what is your body type?  Are you obese?

Second, what is your diet?  Is it mostly steamed veggies and smoothies, or mainly processed foods and fast food?

It seems you definitely have some fat in your liver, so it would probably be good to eliminate some fats in your diet for a while.  Eat more simply.  2% yogurt (because we need some fat in our diets.  Lactose intolerant, well, there are coconut and soy options), a teaspoon or 2 of sunflower oil when you need to saute something.  Eat cooked foods.  Cooked foods are easier on your body for digestion, and can help relieve IBS and improve your energy level - our bodies work hard to digest heavy fats and meats, as well as raw foods.  Make rice your preferred carb, again for ease of digestion. 

Lower your sugar intake.  Get your sugars from fruits and honey.

Make lunch your big meal of the day.  Eat something simple for breakfast.  East lightly for dinner.

I think it goes:

Breakfast - eat like a saint.
Lunch - eat like a king.
Dinner - eat like a pauper.

Cut down on salt, as it causes our bodies to retain water.  If you aren't a big water drinker, try switching some beverages over to water. 

Needless to say, if you drink or smoke - try to stop.

I think you should forget about your liver for a while.  Focus on all the other organs living in your abdomen and chest cavity instead.

Your symptoms could also stem from your gall bladder or colon or kidneys or maybe even spleen and pancreas.  Our glands (pituitary, thyroid, etc) have a way of doing strange things too.

If I was experiencing what you seem to be, and my doctor claimed my liver was fine, the next organs I would try to get medically cleared would be gall bladder, common bile duct, kidneys and colon.  If they all came back cleared, I would see an endocrinologist.

Once everything else comes back normal, you can take your focus back to your liver.

Our mind is also a very powerful tool.  If we believe we are sick, then even if we are perfectly healthy our bodies will react as if we are sick.  All through this journey focus on some of the more beautiful things in life. 

It's Spring/Summer now.  A time filled with beauty and renewed life.  Best wishes.

« Last Edit: June 27, 2017, 05:30:55 am by CureSeeker »
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Pain
« Reply #2 on: June 27, 2017, 08:41:03 am »
Whyme, I just read all of your posts to try to get the fullest possible understanding of your situation. One thing that has puzzled you is how your antibody test could come back repeatedly as positive in 2004, yet be non-reactive (negative) in 2011. It is true that once the HCV antibody test comes back positive, it always comes back positive except for some people who lose the antibodies to HCV that their immune systems created in response to an HCV infection.

The repeated positives in 2004 indicate that you were indeed exposed to HCV, and that your immune system fought it. If you had had a viral load test at the time that your immune system was fighting the HCV, the result would have been "detected"; the fact that your VL results have never showed detectable means that the first time you had the VL test was already after your immune system vanquished the HCV. (You wrote that you are sure you contacted Hep C in late 2000, but your first tests for it were in 2004, so you had probably already been cured by your immune system more than 3 years earlier than the 2004 test. Your antibodies were still plenty strong enough in 2004 to test reactive on the antibody test.)

In 2013, you had slightly elevated ALT, AST, and Bilirubin. How are they now compared to 2013? Elevated liver enzymes can indicate a number of things other than Hep C. After all, the word "hepatitis" is just a combination of the words for "liver" and "inflammation." Your symptoms can be due to anything that causes your liver (or another organ) to be unhappy.

Treatments for Hep C are designed only to get rid of Hep C, not other causes of liver inflammation. The fact that your VL has never been detectable means Hep C treatments won't do any good. Anyway, taking the current Hep C treatments doesn't mean total healing and elimination of symptoms. I had HCV for almost 44 years before my VL came back undetected, but even though Harvoni cured me and tests show my liver is much better, most of my symptoms remain.

As for the NASH diagnosis, given that an earlier doctor thought your problems were due to IBS and/or lactose intolerance, it is logical to keep a skeptical but open mind about any diagnosis. Science is a continual search for greater certainty; a diagnosis represents the best possible understanding given what is known at the present time. CureSeeker makes a very important point: if you are not already eating foods that help your liver and avoiding foods that increase the inflammation, why not give that a try for a few months and see how much it does or doesn't change your symptoms? At a minimum, you'll gain valuable information; at a maximum, you'll feel a lot better.

Hope this helps,

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline whyme

  • Member
  • Posts: 6
Re: Pain
« Reply #3 on: June 28, 2017, 01:17:45 am »
I would like to say thanks for the replies, difficult to talk or get anyone to understand the pain of the loss of body functions and the how the disease truly attempts to handicap you, I will try weight loss.  Attempting to starving this disease has always crossed my mind.

These are some of my lab results from 2016 2017.

8/19/2016              2/10/2017            range
ALT 49                   54                      0-60
AST 60                   61                      0-50

not sure what ALP is, if it is Alk. Phos I included it below

Bili,conj   0.5            0.4                     0.0-0.4
Bili, Total  1.3           1.1                     0.0-1.3
Alk. Phos. 103           93                       0-120
BUN         12           ---                      8-23

I believe that my ALT and AST numbers will drop closer to the lower end of the normal range if I am treated with HEP. C medicines, that my antibodies didn't get me to and allow my liver to function properly.  I imagine a time when without a VL and a Genotype a baseline course of treatment will be the standard.

   

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Pain
« Reply #4 on: June 28, 2017, 01:42:41 am »
If you test not detected for the hep c virus itself with the HCV RNA by PCR test that means you are not currently infected with the hep c virus and you do not need treatment for hep c you do not have hep c if the test for the virus is not detected.

Hep c antibodies are not the virus they are made by your own body in response to coming into contact with the virus. Hep c antibodies are a part of you made by you. There is nothing that can be or needs to be done about antibodies. The new hep c meds would not change having hep c antibodies. Anyone who ever tests positive for hep c antibodies will likely test positive for life even though they do not have hep c virus.

As far as your pain I can't begin to imagine how hard that is to deal with but your best bet is to continue working with your doctors and following their recommendations. Hopefully they will be able to help you soon.

Wishing you my best
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: Pain
« Reply #5 on: June 28, 2017, 06:19:15 am »
I would like to say thanks for the replies, difficult to talk or get anyone to understand the pain of the loss of body functions and the how the disease truly attempts to handicap you, I will try weight loss.  Attempting to starving this disease has always crossed my mind.

These are some of my lab results from 2016 2017.

8/19/2016              2/10/2017            range
ALT 49                   54                      0-60
AST 60                   61                      0-50

not sure what ALP is, if it is Alk. Phos I included it below

Bili,conj   0.5            0.4                     0.0-0.4
Bili, Total  1.3           1.1                     0.0-1.3
Alk. Phos. 103           93                       0-120
BUN         12           ---                      8-23

I believe that my ALT and AST numbers will drop closer to the lower end of the normal range if I am treated with HEP. C medicines, that my antibodies didn't get me to and allow my liver to function properly.  I imagine a time when without a VL and a Genotype a baseline course of treatment will be the standard.

whyme, yes, it is enormously difficult to deal with unresolved pain and loss of function. I know from personal experience, because even though my hepatitis got cured, I still have daily pain and disability (I have additional afflictions). I admire your wonderfully low BUN -- my kidneys have been damaged for at least 21 years, so my BUN is 46 at a lab where normal is 5-27.

Yes, ALP is Alk. Phos. Different labs use different abbreviations. While it is true that hepatitis C meds lower liver enzymes in someone who currently has hep C, your tests show that you don't currently have hep C. Also, during the years that I was waiting for a hep C med that would be safe for me to take given my other diagnoses, my liver enzymes were rising. My PCP said that he wouldn't worry unless they got higher than five times normal. Your ALT and Alk. Phos. are fine and your AST is only a little above normal.

I wasn't thinking of an actual diet when I suggested trying dietary adjustments. My own experiments show me that I have more neuromusculoskeletal pain if I have been eating more sugar. If you are carrying around extra pounds, that often does cause fatigue; the more extra pounds, the greater the fatigue. The older we get, the harder it is to take off excess pounds, so focusing on changing what you eat rather than how much you eat could be the easier way to start. On the other hand, if "Attempting to starving this disease" gives you mental images of actively vanquishing a foe, go for it!

One reason they don't give hep C meds to people without a viral load is that the mechanism by which these great new hep C meds work is to dismember the little buggers that make up the viral load so that they can't replicate. No viral load, no little buggers to dismember, so there's nothing for the hep C med to do.

I'm looking forward to hearing about the results of your dietary experiments.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Pain
« Reply #6 on: June 28, 2017, 08:32:35 pm »
Yeah, I didn't necessarily mean to starve anything either - especially if you are already feeling weak.  In fact, if you make the right choices of what to eat, you can quite literally content yourself eating something all day long, lol.

If you notice, I didn't eliminate carbs, but did suggest rice, as it is easy for your body to digest, conserving energy while giving you the fuel to function.  It also happens to be binding - and, you mentioned a bout of diarrhea.

The doctor said you were lactose intolerant, but guess what?  You can still enjoy the delightful and comforting flavor of butter - in moderation!  In the form of ghee.  Ghee is butter that has had the milk fat cooked out of it.  Perfectly fine for a lactose intolerant person to eat.  It also has a higher burning point than regular butter so it is much easier to cook with.  You can even look on the internet to find out how to make it yourself from unsalted butter.  This allows you to shop butter sales and make up batches of it to reduce costs - or you can buy it premade as well.

Ghee is said to increase metabolism, as well as improve absorption and assimilation of the nutrient rich foods you eat it with.  It is said to nourish all the body's tissues, strengthen the brain and nervous system and improve memory.  It is alleged to lubricate connective tissue and make the body more flexible.  BUT! It should not be abused.  People with high cholesterol or who are overweight should use it cautiously.

Spices are available to you, and usually will not drain energy -

Tumeric is a peppery spice, yellow-orange in color, and has been shown to reduce the growth of fat cells in your body. as well as help break down fat cells.  That sounds like it might help get rid of some fat in your liver, right?  It has also been said to help protect against Alzheimers disease (research is ongoing).  It is a natural anti-inflammatory agent to help reduce muscle and joint pain - and as such - also eases bowel issues like IBS.  Tumeric is a powerful antioxidant that can help prevent some cancers from ever occurring.  Is said to lower cholesterol and blood pressure. Is a source of vitamin b, which helps to improve energy, and stop homocysteine levels from becoming excessive - which is good news for your blood vessels and heart.  Studies have shown that curcumin - a component in turmeric - can help repair liver cells and prevent cirrhosis.

The list for turmeric goes on and on.  It's practically a miracle spice, and all you have to do is put it in your diet.  This is just from ONE spice!

Do you like cilantro?  Although people can be allergic to it, and it should not be used by pregnant women - it is a powerhouse of an herb when it comes to antioxidant action and other health benefits including being helpful with diarrhea.  Again, this is just ONE herb!

It's not about starvation.  It's about not overtaxing your body, and making what you put in your body actually useful to it.

No one said you cant have meat.  You can have any meat you want, but you need to eat much less meat than you do rice and vegetables.  You don't need meat every day.  I naturally only crave a meat 2 to 3 times a week.

Pumpkin seeds are awesome, and delicious when roasted and sprinkled over vegies like steamed fennel and cauliflower.  They have the added benefit of boosting metabolism and energy.

There is a whole world of beneficial foods out there, its just a matter of taking the time to learn about food - and make sure what you put in your body does more than just help create a fatty liver.

Like Gnatty said, give a change in diet a few months, and see if you don't feel better.  It took me a week or two to actually start to think the changes I made were down-right delicious!

Best wishes!



Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

 


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