please help!

[heather1183]

does anybody know anything adout the 'herbal antiviral' Gene-Eden?   its supposedly a broad range antiviral,  but woorks well on hepC.         also, you guys might be able to help me out with this.  ill give you a little history first!   im a 25 yr old female. i was diagnosed with hepC in 2004.  im pretty sure i know how i got it, and i think i was only infected for a maximum of 1.5 years before i found out. im genotype 1a.   i did 6 mos of tx in 2007, starting with a viral load around 800,000. i did not have a biopsy, but on ultrasound and cat scans, my liver looked perfrect.   after 3 mos it was indetectable,  and still after 6 mos.     i have not had insurance now for a year, and i just started school for medical assisting, so obviously they had to do a pcr.  i was devestated when i found out 2 days ago that my viral load is currently 1,790.000!    i just applied to a state insurrance program, and i a am a single mom, pretty low income and in school. so im hoping i get it.   but if i dont,  im going to try and treat this the natural way.  i havent got much idea about what exactly that entails and what would be right for me, so i need all the advice i can get.  i really want to be prepared, so that if i dont qualify for insurance, i can start treating it myself right away.     i really appreciate any comments.

[willy]

Heather, nice to see you again but I'm very sorry that you seem to still be positive for HCV.  It isn't clear to me what happened at the end of your treatment; usually there is an end of TX  (EOT) PCR that confirms the undetectable status, always at 24 weeks/ 6 months post TX, sometimes even at 4 weeks EOT.  It's not uncommon for annual checks following for a few years.

Anyway....first things first.

One thing that I would recommend would be...in the absence of a biopsy that you get a fibrosure blood test.  You may have to shop for it but you can either ask your doctor or the blood lab if they can order and process one.  A fibrosure will give you an approximate stage of your liver disease.  They are often thought to have about an 85% accuracy compared to a biopsy.  They are not as definitive as a biopsy and are more so on each end of the scale of liver damage and less definitive in the middle ranges of damage.  They may cost about 3-400 dollars but insurance knocks them down to very affordable tests.  It is a simple blood draw and results may be available in days.

I would get a better idea of where your staging was before planning much.  I doubt that the supplement would hurt you but I equally doubt it would help much.  I've bought a variety of such things and never saw much real improvement.  From reading about most supplements, especially those concocted specifically for the liver I've never read much that convinced me of their worth.  Believe me; I would like to be convinced.   

Lately I fall more into the camp of doing the best nutrition and lifestyle changes one can do and avoiding all the known bad things.  That's what I do.  I still take some basic supplements, but I'm not convinced that I am on "the path"

You'll find some basics on In the alternatives forum here or in the library.  There is a section on "diet and lifestyle" that contains some basics on diet and lifestyle type choices; the good, the bad and the ugly.

http://www.hcvanonymous.com/SMF/index.php?board=15.0

Willy

[Jazzdenova]

Some of the drug companies have programs as well that you can apply for. I am to lazy to go look but I am sure there are some threads pertaining to it in here.
Don't stress dear, half the people in here have had it for decades without even knowing they had it. I even treated as well just to have it rear up again. You can still have a happy productive life with all the joys, wonders, laughter, heartaches and tears. Like Willy says, if anything it justs makes you a little more self aware and watch your health better.
Be seeing you around.

[MissyMouse]

Hi heather,

Here's my opinion on all this (and we all know what they are worth)

1.  You HAVE to have to get something done to get a more accurate idea of the amount of your liver damage, be it a biopsyor a fibrosure.   Liver ultrasounds are pretty useless in determining amount of damage unless there is a nodule or unless you have been having them done on a very regular basis so each ultrasound can be compared to the prior.   The  main purpose of an ultrasound is to look for nodules that could become cancerous...  not to detect fibrosis or cirrhosis.  However, I can tell you that because I have had very regular ultrasounds (every 6 months for the past 4 years) they were able to detect changes in the contour of my liver when comparing to prior ultrasounds that were indicative of cirrhosis.  So unfortunately in your case since you have only had one ultrasound with nothing to compare it to ... to assume that your have no liver damage would definately not be a good thing.  Absolutely no one progresses at the same rate and no one can predict how fast you will or will not progress.

2.  I still can't believe they only treated you for 6 months.   That's just silly not knowing all the facts.

3.  I get treated at a major teaching university (Shands at the University of Florida) and I recently posed the specific question to the doctor that treats me (he has an EXCELLENT reputation and writes a lot of the research that other doctors read) "are there any supplements that I can take that would help me".  His response to me was that the only "hope" would be Milk Thistle which I was already taking.   BE VERY WARY of supplements that claim they can help hepatitis.  There's a ton of scams out there.

4.  Life style... I have to admit that I was not a true believer in all that healthy living stuff.  Not that I llived a horrid life style, I just didn't put much effort into living a better one.  After failing treatment twice I made some serious changes and I have to say I am a believer in changing your lifestyle.   After my second treatment failure, I began taking the Milk Thistle, began exercising 6 days a week for 45 minutes a day (I use the Wii fit), I eat MUCH healther, I seriously limit my carbs and sugars, I don't eat large meals after 2:00 or 3:00 in the afternoon, I get my calories in early so I can burn them off during the day, and... as silly as this one is going to sound, I started laying out in the sun for about an hour every day the weather permitted.  I truly believe all these things contributed to my EXTREMELY low starting viral load of 5,049 and my rapid response to treatment this time.

Get yourself in to a teaching and research facility, almost all of them have indigent care programs.   Jazz D. is correct about the drug companies providing assistance.   For Pegasys is is pegassist.com and for PegIntron it is Committment to Care.  They are pretty easy to qualify for, basically if you have an income of less than 50k you can get help.

Keep asking questions, we are here for you.

Mouse

[willy]

Also replying to what Missy wrote;  I agree with what she wrote fully about getting a better determination about your staging.  the fact that the doctor decided to use that as a tool may suggest that you could find better doctoring elsewhere. 
OTOH some doctors for instance w/ geno 2's just put people into TX and figure why test em; they are going to treat anyway.  I've seen some doctors start TX w/o a biopsy.

My point is that you still don't know your staging, now years after getting DX'ed.

#2  Often times acute cases of HCV can be treated with a shorter course of TX and with higher chances of SVR.  This would have to be done very soon after initial infection. 

I still don't see an early PCR nor the results of a post TX PCR.  That is highly suspect in my book when one treats for a shorter course of TX particularly. 

Missy's 3# point; I do believe that some alternatives can make a difference but these HCV preparations probably won't have much effect one way or another.  When taking some more potent and serious ones one needs to more closely monitor ones labs.
Also, not all supplements are the same, Milk Thistle in particular.

and #4......I have become over time more of a mind that proper diet and lifestyle can make a strong overall impact on ones health, staging progress, and decrease the chances of other extra hepatic issues.  Will it cure HCV; no.  Will it slow progression in many heppers; probably.  I think a lot of it simply comes down to doing things that keep healthy people healthy; those also often work for heppers too.  Many of us simply do things which impact on us more due to our liver disease; smoking, drinking poor diet choices.  Some of these actually may make a difference in how well we respond when we treat w/ TX.

Willy

[Betty W.]

One thing my doctor said " Milk Thistle could help and certainly can't hurt.eat all the antioxidents you can find, and if you find some one that says that they can cure you by taking herbs,,,RUN LIKE HELL !

Betty

[heather1183]

thank all of you who replied.   i can use all the info i can get

[Ella]

Hi Heather,

As far as I can make out, Gene-Eden is a combination of Selenium, Licorice, catechins, quercetin and cinnamon.  Most of us with HCV are selenium deficient.  I don't know how much licorice is in the tablets - probably not enough to cause blood pressure problems, and apart from that there's nothing in there that could cause you any harm, and they may well help.

I personally know of two people who have contracted acute Hepatitis C and have become undetectable after a series of intravenous vitamin C shots.  There are of course spontaneous remissions - I've never heard of it working with chronic cases.  There was also a lady who used to post here who claimed to have cured herself with alternate therapies, but I've forgotten her name and I don't think she posts here any more.

If you decide to take Milk Thistle, make sure you take it away from any other herbs or medication as it can prevent them from working.

I'm pretty sure that doctors treat these days without insisting on a biopsy.

Whichever way you go, I wish you the best of luck.

Ella

[Pancho and Lefty]

Hi Heather,

I don't know about the supplements, although I did take milk thistle. The 'healthy lifestyle' that includes all the stuff Mouse mentioned along with weight control is MAJOR.

Healthy organisms respond better to any treatment and are better able to fight off any invaders. . . including hep C.

With all the 'miracle' treatments that may come down the pike. . . those who respond best will be those who take proper care of their bodies. That's an often unspoken truth that probably no one really doubts.

Did anyone mention that viral load is not related to liver damage?

Did anyone mention that stress weakens the organism (your body) including the immune system?
Relax and take things one step at a time. At your age with proper preparation for tx. . . . it will no doubt be successful.

best wishes,
Max 

[DougV]

The supplement industry is a billion dollar plus industry and yet there has never been a controlled study that shows any of them, including vitamin supplements are of any use whatsoever.  If fact more recent studies have began to indicated some of the things we think taking are good, Vit A, D, K, can be dangerous.  There isn't even any info showing the ever present multi-vitamin is useful.  Almost everything you eat has already got stuff added to it.  Worse there is no real science that goes into most of these formulations.

Add no proven benefit to known health risk in some cases, makes taking supplements a total act of faith, not something I personally can recommend to anyone, UNLESS, they have a known deficiet.

If I may, I'll use myself as an example.  For two years I have been on a diet.  I try to eat reasonably healthy, but to lose weight you have to cut calories, therefore cutting variety of food.  I had to get a physical recently and figured as I take no supplements and as I had been on a diet I should get my vitamin levels checked to find out what I was deficient in and to see what supplements I might should take.  Cost me $300 bucks to get the panel ran.  End result after two years of diet with no supplements at all.....
Yep, you guessed it, all vitamin levels dead normal.

Or another example.....

When I got anemic due to treatment, my doc instantly suggested iron supplements.  This is extremely common anytime anyone is anemic for any reason.  Few days later a call, saying stop, my iron levels were sky high.  Turns out almost no male is ever iron deficient in this country, females only due to monthly iron loss.  Point here is even your doctors, and many damn good ones, also buy into the marketing hype surrounding supplements.

Milk thistle, same thing, no real study (there is one ongoing) has ever shown benefit.

Recently reports have come out about many herbal supplements containing all kinds of nasty and toxic substances.  Fecal matter, pesticides, insecticides, heavy metals, etc.  Forget where it's bottled and processed, many are grown in third world countries where all kinds of things that have been banned here forever, including DDT, are routinely used.

In the 1800's it was lotions, oils, and so on sold everywhere that eventually resulted in the formation of the FDA to protect the public (not without its own problems), but herbs and supplements often skate clear of the FDA.

So beware of all of this, most probably won't kill you or hurt too much, if you got money to burn feel free to take 'em.  Just please be aware it's strictly a crap shoot, no proof at all, and it can be risky.

And for the record, if the website says .com, .org, or .biz, it most likely is not a reliable source of info.  Try using websites ending in .edu or .gov. for info instead.

I'm also going to disagree with the suggestion of a biopsy.  Instead let me ask a couple questions...

Has your mother been tested and did you ever have a blood transfusion prior to 1988 (think you would have been five or younger).  If your mom does not have hep and if you did not recieve blood, then I see no need to do a biopsy.  You seem to know when you got it, you're young, and this disease progresses over decades not years.  There is absolutely no reason to believe liver damage at this time thus no need to take expensive and potentially dangerous tests.  Fibrosure or blood test, fine if you want, but assuming you haven't had this since birth or shortly after, there is no real need.  Come on yall, this young lady is 25, not 55.

I'll be blunt, if I was you I would do only a few things immediately.  I would evaluate my diet and exercise and make sure they are good and healthy and if you drink I'd stop.  Then I'd sit back and relax for a couple years and see if new drugs are approved.  In the meantime if you can find a study that is offering new drugs for free, you might consider it.

And that is all I would do.  No supplements, no expensive test, just stay healthy and wait a bit.

Just thought I'd toss you a different perspective.

Doug

[Pancho and Lefty]

I'll be blunt, if I was you I would do only a few things immediately.  I would evaluate my diet and exercise and make sure they are good and healthy and if you drink I'd stop.  Then I'd sit back and relax for a couple years and see if new drugs are approved.  In the meantime if you can find a study that is offering new drugs for free, you might consider it.

And that is all I would do.  No supplements, no expensive test, just stay healthy and wait a bit.

This is pretty much what I tried to say. Why don't you focus your energies on getting through school. It's a grand adventure. . . full of challenges and rewards.

Max

[negative1]

Very nicely put Doug.

Heather......Good luck and relax!


Earl

[willy]

Hey I agree with ya'll but......I'm still not so certain about all supplements.  I think we'll know more about that in the future.

I would again strongly recommend the fibrosure test but it may serve as a prelude to a biopsy if the score puts you into a middle or advanced stage.  I think some sort of staging tool is essential since a very small percentage of people may advance quite rapidiy.

I also forgot to mention possible getting that iron panel and specifically getting ferratin checked to see if you have excess iron.  That is one more thing that is relatively easy to check and correct.

Also keep in mind....Doug lives in Florida.  He may not have a Vit D deficiency.  That may not apply to people in Fargo.  ; )  I think I've seen studies that many americans are vit D deficient.

Willy

[Ella]

Yes Will, I agree.  There are SOME supplements that can be very beneficial - amongst them Alpha Lipoic Acid, Co-enzyme Q10 etc., and, as you mentioned, there is a worldwide epidemic of vitamin D deficiency.  Not just in the colder areas - it is acknowledged as a big problem here in sunny Australia because of the over-use of sun block.  The problem with heavy metals and other toxic substances mainly concerns products from China.

I agree that a good diet, exercise, lots of laughter, music and walks in the wild is the way to go.  However, a good balanced diet is almost impossible to achieve these days with chemical leaching of soils - pesticides and herbicides contaminating most of our food, and the constant ingestion of pthalates and parabens from plastic bottles, cosmetics etc.  All this stuff has a detrimental effect on an already struggling liver.  In my mind this makes some supplements almost essential - 200mcg of selenomethione daily amongst them.

The old chestnut about there being no proof that some of these things work has a very simple explanation.  Most, if not all, clinical trials are conducted by drug companies which understandably are not going to shell out huge amounts of money on clinical trials for products that they can't patent.  Therefore, any positive results experienced by people are termed anecdotal - but there's a lot of anecdotal evidence out there.

There's a middle road to all this - death by iatrogenic (doctor caused) disease, from hospital errors to toxic side effects from drugs runs about third in line after heart disease and cancer.  There's also a lot of snake oil sellers of miracle cures out there.  Heather, my advice would be to see a good qualified naturopath to advise you on diet and beneficial supplements, and also a good gastroenterologist, and take advantage of the best of both worlds.

[negative1]

Heather.....
you have gotten some of the best of advice here......from people that have been there...you really need to look no further