Alternative Treatments - End Stage Liver Disease

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battystarr
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 10/7/2008 1:34 PM (GMT -6)   
Hello Everyone,
 
I am new to this forum. My father has been diagnosed with end stage liver disease. We have known for years that he was sick but he never wanted to quit drinking so until recently it was just something upsetting to think about. In the past two years he has acknowledged his sickness and mortality and recently, in June quit drinking. He has both Hepatitis and Cirrohsis and has had Jaudice for quite a long time. 5-7 yrs. The hepatitis is from his 20's and the cirrohisis is from the drinking. He is on Lactulose, lasix, and vitamins. Since he quit drinking and started taking the medicine, his quality of life has greatly diminished. He is always tired, dizzy, and nauseous. His platlets are very low also making it difficult for his blood to clot. I am wondering if anyone has had any experience with alternative herbal medicines, such as Milk Thistle extract or dandelion. I ask because I have read that these natural herbal remedies have helped people with ESLD and other issues for a very long time, but I have not found any specific instances. I don't think my father's health is good enough to survive a transplant, so I am trying to look for any alternative and also any useful information you may have! Thank you!
 
My prayers go out to all of you, both caregivers and the sufferers as I am slowly learning how painful this is!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/7/2008 2:14 PM (GMT -6)   

BattyStar, welcome to the forum!  I am so sorry you are having to deal with your's dad liver disease, but you have come to the right place.

You do not say what type of hepatitis he has or what treatment he is on.  Is it hepatitis C?  Is he receiving treatment for that?  I can better answer your questions and address your father's issues if I have more information.

Connie


CaryF
Regular Member


Date Joined Nov 2007
Total Posts : 309
   Posted 10/7/2008 2:33 PM (GMT -6)   

I have a lot of experience with Milk Thistle, dandelion, etc. and recommend them for folks who have liver disease but are holding their own. For ESLD I would strictly follow Drs. advice, follow a good diet and not waste $$ on alternatives, supplements, etc.

Just my $ .02 worth & trying to save you alittle $$.

Cary

 

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/7/2008 2:45 PM (GMT -6)   
Cary, actually I agree.  BattyStar, if your dad is as sick as you describe, alternative treatments (including milk thistle) would probably just be a waste of money.  One thing that is important, though, is diet.  If he will eliminate red meat and eat more fruits and veggies, it will help him feel better.  However, I would still like to know what kind of meds/treatment he is taking.

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


battystarr
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 10/8/2008 6:30 AM (GMT -6)   

Thanks for the advice on the natural treatments. He has Hep C and he is only on the medicine I described. I have heard of some people taking an almost insulin-like injection for Hep C but he doesn't take anything like that. Just Lactulose, Aldactone, Atenelol and vitamins. I think i may have misspelled them. He is in the hospital right now, they drained 8 liters from him on Monday and are supposed to be keeping him until they can drain him again. I hope this helps!

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/8/2008 2:04 PM (GMT -6)   

Batty, it sounds like he is not receiving treatment for the hep C.  That would be the injections you mentioned.  Perhaps he just isn't a candidate, as his liver disease is too advanced at this time.

It's good that he is in the hospital and receiving care, but that hospital food isn't the best for liver disease.  At least it might put some weight on him, if that is a problem.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/8/2008 5:23 PM (GMT -6)   
Welcome to the forum Battystarr. I am so sorry that you are having to watch your father deal with this disease. You both will be in my prayers.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/8/2008 8:30 PM (GMT -6)   
Hello Battystar and welcome to HealingWell,

Sorry about your father. What kind of doctor is he seeing? With ESLD he should be seeing a Hepatologist if possible. They are the experts on the liver. Some times they give patients blood transfusions when their blood count is low......and usually afterwards they have more energy and feel better until their blood count goes low again. My husband use to love to get blood tranfusions because of it.

The lactolose is a nasty med.... but it is a necessary evil. It takes a while for the patients to start tolerating it better. My husband hated it. But he knew that he had to take it.

Take care......thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/10/2008 4:50 AM (GMT -6)   
BattyStarr

Just wanted to add my welcome to the forum. I wish you and your family the strength to fight this horrid disease.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/13/2008 9:45 PM (GMT -6)   

Hi, Joyce!  I just did some reading online about Berkson's discovery and read his paper.  I am definitely going to bring this to the attention of my hepatologist!  I am not due to see her until Feb., but think I will ask for a sooner appt.  From what I read, he used IV ALA.

My question is why hepatologists are not using this regimen!?  And it's definitely been recognized since 2006!  Because the doctors/hospitals/transplant centers would lose money if this regimen is widely used and it works!!?  It's hard to believe that would be the reason at Mayo. 


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


CaryF
Regular Member


Date Joined Nov 2007
Total Posts : 309
   Posted 10/14/2008 10:21 AM (GMT -6)   
Mornin Connie,

I brought up LDN & CAM treatment to my hepatologist & he said it has no proven efficacy for Hep C (or anything - the studies are not FDA reviewed or approved) & this is a fad alternative treatment in the family of going to Mexico for treatments that claim to cure everything from MS to AIDS to cancer. As I am teed up for "combo" treatment he now wants me off all supplements.

I have gone down the "alternative" route & found it to be a pricey placebo. I'm for anything that works - but also for trying to save us folks grief and $$ as anyone can spend a fortune on snake oil. Its much harder to make long term lifestyle changes.

Best,
Cary

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/14/2008 12:47 PM (GMT -6)   

Cary, I'm with you on most of the "alternative medicine" therapies.  However, I'm speaking specifically of alpha-lipoic acid and the 2 other antioxidants:

Treatment Program: The author describes a low cost and efficacious treatment program in 3 patients with cirrhosis, portal hypertension and esophageal varies secondary to chronic hepatitis C infection. This effective and conservative regimen combines 3 potent antioxidants (alpha-lipoic acid [thioctic acid], silymarin, and selenium] that possess antiviral, free radical quenching and immune boosting qualities.

Perhaps there were not enough people in the study (79 of which 75 completely recovered!)  It certainly does warrant exploration, and in my reading I found that the NIH is studying this.  wink

Silymarin is milk thistle.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


CaryF
Regular Member


Date Joined Nov 2007
Total Posts : 309
   Posted 10/14/2008 2:36 PM (GMT -6)   
Connie,

I already take Milk Thistle (organic), selenium (this one you can take too much of), ALA, Fringetree, Dandelion, CoQ10, Schizandra, Taurine & a pile of vitamins. These are simple supplements you can get at any quality health food store & have alleged liver protecting, immune boosting effects. To suggest these could actually cure Hep C is simply ridiculous. Again, I suggest a good healthy diet, lifestyle & supplements may help if you have liver disaease & are holding your own, certainly not ESLD. My Drs. have never given me any positive feedback regarding these supplements and in fact have asked me to go off them now that I am going to begin treatment.

I encourage you to go ahead & try what ever you believe will work for you. These supplements are not cheap (when purchased in good quality) & when I got Vit B12 shots they were outragous and I don't know if they really helped or not.

The NIH studies all kinds of things, doesn't mean they're FDA approved. I'd like to better understand what "completely recovered" means in this particular study as liver scarring can't be reversed.

I will support what ever you decide to do. I'd love to hear your hepatoolgists's opinion,

:-) Cary

writeleft
New Member


Date Joined Sep 2008
Total Posts : 14
   Posted 10/14/2008 3:43 PM (GMT -6)   

Battystar,

Wow, what a good question!  Just gives you an idea of the wealth of knowledge and experience, trading hands freely at HealingWell!

There is nothing I can add, except welcome, and best wishes... in this difficult time.


 
until next time,
     writeleft


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/14/2008 5:25 PM (GMT -6)   
Before the ribovarin/inteferon(sp) combo treatments were FDA approved my husband was involved in a study where they were researching the effectiveness. He got all his medications free. Now the treatment is widely used and very pricey with a 50% success rate depending on which type of hep C you have.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/14/2008 6:44 PM (GMT -6)   
Cary, the patients were reportedly "fully recovered" to the point of working and carrying on normal lives.  Energy returned, etc.  I don't plan to go out and buy supplements until I discuss this with my doctor and get her take on it.  The ALA was given intravenously in the study.  I did take milk thistle right after I was diagnosed with hep C, but did not continue with it for long as it frankly...to put it as nicely as I can...gave me a sore bottom.  Also, there was no change in my liver enzymes--in fact they increased.  eyes
Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


CaryF
Regular Member


Date Joined Nov 2007
Total Posts : 309
   Posted 10/15/2008 10:39 AM (GMT -6)   
Connie,

Keep us informed as to what your Dr. says. I just hate "false hope" as I've been down the alternative road & it did nothing for me (except a big hit in the pocketbook) although my "bottom" was not affected :-)

I just hate seeing us folks waste $$ chasing pipe dreams, must be realistic with this disease. Sorry, I just don't believe the claims of fully recovered.

Best,
Cary

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/15/2008 11:44 AM (GMT -6)   

I definitely don't have "false hope," Cary.  Just looking into it as an alternative therapy (that may or may not work), which is not as horrible as the standard "combo" treatment.  I decided not to do the combo at this time, as my body has just been through too much these past nearly six years.  My hepatologist agrees with my decision. 

When I get a chance to see my hepatologist, I'll take a copy of the report on the Berkson study, and will be sure to let everyone know what she had to say.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


autumnrain
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 12/9/2008 2:40 AM (GMT -6)   
I guess losing hope is worse then trying herbs. My sister has ESLD, and ascities. She is taking milk thistle, dandelion and schizandra, maybe it wont help but neither is what doctor has her on. Her stomach is bigger then a woman 9 mos pregnant and she is in severe pain, and they seem to have nothing to help her, so I must sit hearing and watching her suffer. It is absolutely killing me so I had to try herbs, I mean what do we have to lose at this point that isn't already being lost. I have lost my faith and my happiness already so I opt to believe I did all I could... Peace
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