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Author Topic: looking for advice from hep c warriors on diet and supplements  (Read 16636 times)

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Offline oneearth777

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Hello there! I posted a couple weeks ago in the recently diagnosed section, I didn't have much info then but I have a little more now. My doctor said I do have active hepatitis c, but I do not quAlify for treatment. All of my vitals were perfect, my liver enzymes are normal, I have no liver damage, and everything else was perfectly fine. So pretty much I'm not sick enough for treatment. However I do feel a bit of something (pain, pressure) but it's not at all bothersome. He seems to think it could be my stomach or something else non liver related. Can't wait to get to the bottom of that. So with all of that being said, I'm taking more precautionary measures.

What kind of food works good for you? And supplements? I know I know some supplements can cause issues but I've always been a firm believer in them. As of now, I take 1 bit of garlic twice a week, 1 gram or so of turmeric 3 times a week, children's multivitamin 3 times a week, and was considering introducing milk thistle as well. I also drink licorice root tea, green tea and chamomile tea. I'm on a strict vegan diet. I wanna hear what is working for all of you, and what hasn't worked. I should also mention the only prescription med I'm taking is abilify, hoping this is a good tool to help me with the diagnosis. And also that I don't qualify for treatment.

Thanks everyone!

Offline lporterrn

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #1 on: October 04, 2014, 04:39:48 pm »
Hi Oneearth - I'd get a second opinion at some point. If you have hep C, you do qualify for treatment - not that every insurance company will pay for it, but normal liver enzymes are not a reason to deny treatment. Also there are high normals that indicate that you may be normal, but there may be damage occurring. I assume your doc is a GI or liver specialist?

As for supplements - I am not a fan of supplements, unless you do really good research, and take brands that pass rigorous testing and have what they say they have. Everything you are taking is OK. Turmeric a great idea. Not sure how much iron is in the children's multi - never looked in to it - but assuming it is low, that sounds fine.

The problem with milk thistle is that pretty much everything sold in the U.S. has substandard ingredients in it, so basically it is useless. Here is something to read: http://hcvadvocate.org/library/herb_glossary.asp There are quite a few other factsheets listed on that same website.

I am a huge fan of eating a plant-based diet, getting regular exercise, sleep, having fun, not drinking or drugging, etc. These things are important.
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 Surf Till U Die

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #2 on: October 05, 2014, 08:38:55 am »
    Yes Yes on the fun. This Florida boy who was diagnosed with hepc in 1998 took up snow boarding in 2004 at age 53 never ski or any snow sport.  Whoo Hoo I was hook so do something fun every day. Life dose not end when hepc comes into our life. Do something you always wanted to do. Every day is a gift for me from God its my job not to waste it.

                  just a surfer looking to live life.    John 
             

Offline lporterrn

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #3 on: October 05, 2014, 06:01:48 pm »
You rock John. Hope you will submit your hep story - I especially like ones from people who reach beyond normal limits. http://www.hepmag.com/hep_stories_submission.shtml
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 oneearth777

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #4 on: October 05, 2014, 10:43:05 pm »
You both rock, actually. Lucinda, thank you so much for your words, I feel a bit alone in this and it's nice to know there are people reaching out to others and helping them. John, I love your attitude! You are both very inspiring. I will consider the second opinion Lucinda, good idea. Thanks again for your time guys.

Offline GoingtobeatHep

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #5 on: October 17, 2014, 10:17:12 pm »
I have only been doing one herb for many years that has worked for me. I suspect I got HepC from a blood product in the 80s,  and found out I had HepC by donating blood around 2002.  It floored me because I had no symptoms, still not many to this day.  Type 1a. To put the long story short (haha, if possible with me), since 2002,  I have been using Milk Thistle in the best grade I could buy.  I also have a good vitamin program with a no-iron supplement. ( I am in my 50s, my liver alts always normal, viral load staying around 1 mil,  remaining a "treatment virgin" until I can get affordable care with the daclastavir/sovaldi). I try to keep my immunity up by healthy regimen. Since March of 2013,  I've been on a glycemic index diet to keep the weight and bad fats down, which can tax the liver and other body functions. This diet has fruits, vegetables, and nuts which is good for you. Always advise your Dr, but in my case the Dr was not informative about much of anything, always in a rush.  For questions like the ones you are asking, I always tell my friends to ask the local pharmacist about all the things you put in the body, they've often helped me more than any Dr.  Hope this helps.

Offline oneearth777

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #6 on: October 17, 2014, 11:17:29 pm »
Hello goingtobeat,
Thank you for taking the time to respond! I've been waiting for my next doctors appointment to fully discuss my regimen. I have been on turmeric daily for a couple months in the morning and milk thistle every night. I also take a no iron multi vitamin now as well. I do feel a lot better, more energy, crisp vision and my mind is sharper. I should also add my pain level has gone down as well! I'll be sure to mention it to the doctor though. Glad to hear you are doing well without treatment, this seems to be working well for me too. Also, my doctor hasn't been very informative, but I'll try harder at my next appointment to get more informed. Thaks again! And best of luck to you.

Offline GoingtobeatHep

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #7 on: October 17, 2014, 11:42:22 pm »
Oneearth, being you are vegan, maybe ask about B-12 shots from the Dr? I have thought about doing that, being the Dr already knows I have HepC. Glad you are feeling better. I know you already know the herbs and things that can damage the liver, as well. There is lists about them online I am sure you already have found. Again, if you have a really cool pharmacist, some of them are like a walking encyclopedia about herbs and meds. I am blessed to know a pharmacist like this, the guy must have a photographic memory. Sadly, milk thistle is a B rating or  inconclusive with the Mayo Clinic, and not enough tests run on it. 

Offline Roger

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #8 on: November 21, 2014, 01:44:43 am »
OneEarth,

Here is a good vitamin regiment for anybody, but especially
people who have potential immune problems.

No Iron (important)
C (important)
NAC (important)
D3 (important)
Fish oil (important)
Turmeric (if your joints start to hurt)
Baby Aspirin 

No alcohol - none.
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline Solvaldi-Olysio user

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #9 on: December 21, 2014, 03:32:25 pm »
Like most other people with Hep-C, I also used milk thistle daily.

But Milk Thistle is listed as one of the supplements not to use while on the Solvaldi-Olysio combo treatment. I would think this would apply to Harvoni as well, with Solvaldi being the main ingredient.

My Doctor recommended to stop using milk thistle before starting the S/O combo treatment. Which I started S/O last night.

From what I read milk thistle can increase the amount of the medication in your system. Sounds like that might be a good thing, but likely not a good idea and might result in severe adverse reactions/complications.

I don't have that info in front of me, but if I find it again I will post it.

Good luck and Merry Xmas, S/O user.


Offline paparocks

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #10 on: December 21, 2014, 11:41:14 pm »
in the bottle of milk thistle in our supplements cabinet my wife has written "NO PAUL" over the cap. reason being I'm on other meds that could be cleansed from my liver. Probably not the case in most folks out there, but if your on other meds I wouldnt recommend it. also like a prevous post has said, finding a good grade of milk thistles is hard to do.

check this___I was diagnosed in 87 and it has only began to cause issues this year. I to am vegan/vegetarian...belong to one of the peanut eating churches. I do alot of running and have worked in a very demanding job, 24 years of finishing drywall. .....I take about 1-2ozes of extra virgin coconut oil daily as well as eating eggs for the albumin proteins. 5 servings of veggies a day and only 100% whole wheat breads. no processed foods. and absolutely no snack cakes or donut like foods.

NAC free form amino acid
selenium mcg and garlic

Offline Mugwump

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #11 on: December 28, 2014, 02:01:48 am »
I am a long time HCV survivor who underwent unsuccessful treatment over 10 years ago with pegatron + ribavirin when the treatment was still fairly new but still over 9 years after my first diagnosis of being HCV active.

When first diagnosed my ALT was only very slightly elevated and the diagnosis only happened because I had non specific flue like symptoms over a long period of time and my immune system attacked my thyroid gland and I had non specific elevated thyroid hormone levels. So the final diagnosis of HCV took quite a few years for the doctors to catch. 

What, for me has been the most useful aspect of keeping healthy while fighting HCV, is a positive mental attitude which helps keep your mind off the fact that you are HCV active. But more important than even that is finding joy in what you do in life.

I have tried to keep my mind open to new ideas and not be a nihilist and this has helped me greatly, more so than diet. I study, play and write classical music as a hobby, fly fish as well as try to keep myself gainfully employed at any work that I can still do.

As my HCV progressed to cirrhosis post treatment, there were times that I felt hopeless and as my liver function deteriorated and my ALT reading increased slowly over the years. Within the last two years my ability to remain gainfully employed diminished to the extent that work even as a simple janitor became impossible because of weakness caused by decreased liver function that exacerbated loss of function in my left leg caused by a previous spinal injury I sustained in 1980 while working on a log deck.

Healthy exercise of both the mind and body has served to mitigate the effects of the disease more than any folk remedies or diets that I have tried over the years. Yes a healthy diet is important, but a diet that is balanced is just as important, be that vegetarian or whatever.

I feel blessed that I have lived long enough to finally have the option of a re-treatment with the latest drug. I started Harvoni on Dec 4, so I am at the early stage of the 24 week treatment regimen called for in my situation.

What I can tell you is try to always find things to do to keep your attitude up beat and do not let the disease get you down and TAKE A PROACTIVE ROLE in your decisions to go for treatment if it becomes necessary. For instance if you do not know the exact genotype of your infection then ask, do not feel as if you are imposing upon the doctor. 

When I was first diagnosed with the disease the attitudes of some people towards people with HCV were much more difficult to deal with. Even some medical professionals just assumed that they were dealing with someone who just consumes too much alcohol! 20 years ago it was difficult to even tell others that you have the infection without feeling like a pariah. Fortunately this has changed to a great extent as the science has shown the true nature of the disease.

Even if I am in the unlucky category that relapses after this round of treatment I will fight the disease the best way I know how, by making the most of my mind and body in the time I have left on this planet.

I know your experience will be different than mine but the only way to fight the depressing aspects of this infection is to take it on as and fight it proactively all the way while being patient and kind to yourself as well as others, it will make the disease much easier to deal with.


 
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline lporterrn

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #12 on: December 28, 2014, 11:42:53 am »
Mugwump - this is exactly what I needed to read today - a hearty dose of inspiration. I wish you the very best, and soooo hope you will submit your story to HepStories http://www.hepmag.com/hep_stories.shtml
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 badbradley

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #13 on: December 29, 2014, 04:59:14 pm »
Hey Mugwump,       What's a Mugwump?

   Welcome Friend!
   Enjoyed your first post.
                                      Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline badbradley

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #14 on: December 29, 2014, 07:59:16 pm »
Mugwump,         
              Why did you refuse to support James G. Blaine?
                                           Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Mugwump

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #15 on: December 29, 2014, 10:05:46 pm »
Mugwump,         
              Why did you refuse to support James G. Blaine?
                                           Brad
? Perhaps it is because in 1892 I was only a young piano player and did not learn how to play classical guitar until this incarnation?  I am a Canuck if that is permitted, if not then have a mod dump me as a member. Besides I never did ascribe to the tenets of the Munroe Doctrine or ever believe that my "destiny is manifest" One of the pieces of music that I am currently working to record was written by a very gifted composer named Leo Brouwer, who manages to rise above politics, thank God.
http://en.wikipedia.org/wiki/Leo_Brouwer
http://www.musicsalesclassical.com/composer/long-bio/leo-brouwer 
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline badbradley

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #16 on: December 29, 2014, 10:45:32 pm »
Eric,         
    Everyone is welcome on this forum. Wish you all the success on your recording efforts.   
          Sincerely, Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Mugwump

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #17 on: December 30, 2014, 06:48:32 am »
Eric,         
    Everyone is welcome on this forum. Wish you all the success on your recording efforts.   
          Sincerely, Brad
Sorry I did not see your first question about my forum name. I hope the OP responds soon as I really do not like jumping and shifting gears on someone's thread but do like to be on topic.

Brad it is very easy to go off the rails when thinking about nothing but your health so if the original poster reads this I sincerely hope she clears the infection at an early stage of the disease rather than having to live with it for a very long time.
Eric   
« Last Edit: December 30, 2014, 07:47:47 am by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline badbradley

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #18 on: December 30, 2014, 07:50:44 pm »
Sorry I did not see your first question about my forum name. I hope the OP responds soon as I really do not like jumping and shifting gears on someone's thread but do like to be on topic.
Eric,
       No need to apologize. It was me being a knucklehead! I apologize to you and to the original poster. I will be more considerate in the future.
                                                       Sincerely, Brad

P.S.  Used to be able to pull off a pretty mean alternating triple ratamccue on a real bouncy rubber drum pad!  Hope we're all cured soon!
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Mugwump

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #19 on: December 30, 2014, 11:24:07 pm »

P.S.  Used to be able to pull off a pretty mean alternating triple ratamccue on a real bouncy rubber drum pad!  Hope we're all cured soon!
Cool, the piece by Leo that I am playing has beautiful cross measure 3/2 melodies that are very evocative and full of the essential angst of a great somber latin melody.

It has already been posted in a video format by a very gifted young performer from Russia named Tatyana Ryzhkova. https://www.youtube.com/watch?v=tObV41FB8KI

I hope that this treatment will also make playing and performing in public possible again for all who play music at any level. I have not stepped up on a stage for over 25 years or been able to achieve controlled peaceful performance on the guitar, or for that matter even sing a song with confidence the way I once did.

Eric





 
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline badbradley

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #20 on: December 31, 2014, 10:42:59 pm »
Eric,
  Thanks for sharing. Not versed in classical music speak but I did enjoy the performance. Somber, yes but we all have those moods. She played flawlessly! Very pretty woman too. That neck on that guitar is about as fat as they make them. She certainly had no problem with fingerings. I am always on the prowl for new music. I could certainly listen to more of this. I've recently gravitated more towards guitar jazz, rather than the horn stuff- a little burned out on it! You sound like a very accomplished musician, frustrations aside. Would be nice to see you perform this. Are you gonna put it on you tube?  Glad to hear of your recent good news regarding your labs. Nice!    Happy New Year!
                                                                      Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Mugwump

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Re: looking for advice from hep c warriors on diet and supplements
« Reply #21 on: January 01, 2015, 12:16:27 pm »
Eric,
  Thanks for sharing. Not versed in classical music speak but I did enjoy the performance. Somber, yes but we all have those moods. She played flawlessly! Very pretty woman too. That neck on that guitar is about as fat as they make them. She certainly had no problem with fingerings. I am always on the prowl for new music. I could certainly listen to more of this. I've recently gravitated more towards guitar jazz, rather than the horn stuff- a little burned out on it! You sound like a very accomplished musician, frustrations aside. Would be nice to see you perform this. Are you gonna put it on you tube?  Glad to hear of your recent good news regarding your labs. Nice!    Happy New Year!
                                                                      Brad
I will try provided the copyrights held by Chester Music do not squash my effort. I do not know Leo Brouwer personally and do not use midi only straight audio to record in original flac audio, with an hodge podge of really cheap used gear and especially without having a rock and roll studio tech to mess up the dynamic range of my recordings for the pupose of creating mp3 or aac style distribution of the recording.  So don't hold your breath waiting it might take a while. I do play the piece at a little faster clip as it is marked andante.  I use an M-audio 24/96 stereo audiophile card from the year 2001 if you get my drift. Not exactly pro gear to say the least but decent enough to do the deed.

PM me if you prefer as this is a little too far off the topic of the OP.

Regards
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

 


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