For those who CAN'T go the traditional treatment route

[mj6000]

I only recommend this article for those who CAN'T treat with traditional treatment,so don't shoot the messenger. It's just an FYI  that I came across. I don't know how reputable this Dr is. I of course believe in traditional treatment 100% but it doesn't work for all  & some can't take the side effects...and THEN alternatives ONLY as the last chance or option for hope... It's the Alpha Lipoic Regimen.    Here is the link below.

http://www.huffingtonpost.com/dr-mercola/antioxidants-benefits_b_509655.html

[desrt]

Same old tired story that's been retold on here a dozen times.
If you go through the archives, you'll find those who proclaim the loudest that they "can't" treat with interferon are the ones who become hysterical and angry if you ask them for details of why  they can't treat. Mysterious sores and rare syndromes sound more like rationalizations and doctor/patient screwups than actual reasons the closer that their stories are examined.
Personally, I think the world is a safer, happier place if they don't use interferon, so -  win/win situation.

[copyman]

here we go again. another dr berkson follower.

FYI, it doesn't work.

[Upbeat]

Even after you state your reason for the post and ask for them not to shoot the messenger you still get the same response.  I sometimes wonder how much brain damage is done with TX .

[desrt]

Berkson's tale of his noble fight against the system has reached the point of 'yelling theatre in a crowded fire'.  He needs to come up with some new material, otherwise even the gullible are going to become bored with him.

[mj6000]

I never said I was a follower. I have never gotten into the debate about Dr Berkson. I only now searched the archives about him and saw the responses...What does "brain damage" have to do with anything other than shooting the messenger? I'm sorry if I don't fit into the "knowledgeable" private club. Geeez!

[Trinity4]

You know, I looked over this thread and knew exactly where it would go.
We all know Berkson is out there, it's no big deal.  

mj6000 don't take offense because I think you knew exactly the type of response you would get or you wouldn't have said don't shoot the messenger.  You like to promote positive thinking and did you think the reaction was going to positive?  

Trinity

[mj6000]

What would you guys tell someone who can't treat? Too bad... There is no hope,sorry...What then? This is not a post about me.

[mj6000]

I do think people should be more positive in their posts. I have seen people get angry at the poster before,thats why I said don't shoot the messenger,If anyone wants to post fine but if anyone wants to attack me please send me a private message.

[Trish77]

Please tell me how your post serves any useful purpose whatsoever to attack the character of people who decide that Interferon and Ribavirin - SOC - is too hard on them and inferring that such people are whackjobs and that there is no good reason that SOC should not be tolerable for everyone.  There are a significant number of people who CANNOT treat and DO find SOC to be hard on them.  There was one person in particular .... she had to stop treatment after 30 days.  Only 30 days for the terrible impact it had on her.  Thankfully she is SVR.  Is your world so limited that you've never encountered anyone who legitimately cannot do SOC?  I've encountered a number of people in that situation, enough to know that they deserve better treatment and better support than they get on this forum.

Someone posts something in a well-meaning fashion for those who cannot do SOC - such as the guy who posted earlier in the week at Stage 3 who gets uncontrollable coughing as a side effect from SOC therapy .. and this is the best you can come up with.

And Medhelp says that alternatives are allowed to be discussed here and allows posts such as yours to stand.

[Willy50]

I expected better of you.  

Almost any decompensating cirrhotic is challenged by TX, and yet many are forced to treat for longer periods of time to attain SVR.

Many borderline compensating cirrhotics can be pushed into decompensation by TX.

I have other friends who cannot TX because their whites TANK, others because their RBC tank.

I have one friend who....in spite of the fact that TX brought on Lupus, they tried again because they had advanced liver damage.  One shot either put them in the hospital, or damn near.  It took weeks/ moths to recover and they have since lost their job; disability related to TX.

I strongly disagree with your post and I wonder if you would like to amend what you wrote.  There are a few well known members of this board who would love to treat but absolutely cannot.  Many others are very cautious because it is risky due to their staging or their issues with treating with current SOC.

Saying that the world is "safer, happier" if they don't treat sounds a lot like the world will be better off when they are forced to wait, and need a TP or die while waiting for one.  Is that a "win/win"?  Really?  That strikes me as mean spirited combined with what looks like the ignorance in the earlier part of your post

Kudos for one well thought out post.  
-------------------------------------------------
I wrote that yesterday but decided to sit on it.

What would I change?  Only that few in this forum decided to stand up and write anything.  That speaks volumes.

Oh yeah, I see that your prose *hinges* on if they are vocal or not.  Meaning if they are silent and suffer they may be real.  If they are vocal though, they must be frauds.

You discredit people who cannot treat, insinuating that they are fakers.  Many people who know better were strangely silent in this thread.  

Willy

[mj6000]

I knew someone who had to stop treatment at 16 weeks and had a horrible experience and never even went UND. He has HIV with genotype 1 and his odds were not very good anyway. He posted a suicidial post on here and I've been troubled by that ever since...Haven't heard from him.

[desrt]

I'm certainly not angry with you. I think people should be allowed to post any knd of sillieness they wish here. I think it's a bit disengenuous of you to act all hurt and confused by the reaction you get to your posting if, as Trinity suggests, you knew what the reaction would be ahead of time.


"What would you guys tell someone who can't treat?"

I know of few, if any, who fall into that category. I know of those who "aren't allowed to treat" because they've threatened or attempted to hurt themselves or others in the past. To them I'd say, "Find a good psychiatrist to work with, get your issues straightened out, and get your therapist to sign off on the fact. Find someone to hold your hand during tx or get heavily sedated for 6-12 months if clearing the virus is that important to you.
For those with drastic drops in their WBC and RBC counts - find out *why* you have these problems, Try to find some way to make your system more tolerant to tx drugs *before* you start tx. Don't just jump in and wing it as you go. And then be prepared to use epogen and neupogen and even transfuse if necessary.

For everyone who decides to treat:

1) Find out ahead of time of time what health problems your family seems to be predisposed to. Thyroid, mental health issues, anemia. The list of pre-existing conditions that IFN can aggravate is a long one.
2)Find out which environmental factors that effect your health can be eliminated. If you have a job that exposes you to toxins get a different job. If you live in a house with 'Chinese sheetrock' or formaldehyde in the carpet, go live in a tent. I'm serious. If becoming serum undetectable is that important to you, you'll make the necessary life style changes that will allow you to do the only tx that works.
3)Get a biopsy. Find out if you actually need to do the currently available tx, or whether you have the time to wait for non-IFN based tx or even just learn to co-exist with the virus.

[Mary4now]

OMG, this guy was just trying to help a bit.  Can anyone just say thank you, and let him know this has come up   before .  

[mj6000]

I knew some would disagree with the article and I have no problem with that,post away but when someone tells ME I have brain damage on is unknowledgeable thats going in a totally different direction and they should use private messages for that.

[Trish77]

What does it matter what the reasons are why someone doesn't treat?  You're talking as if it's some test of character deficiency if someone chooses to treat.

All that matters is that they have all the information in front of them to be able to make a decision with their eyes wide open.  I personally don't see anything wrong with someone who decides that living with Hep C is okay with them as long as they understand the implications of that.  It would not be my choice but then it is not my life.

Aside from that.  If you all you can come up with is that those who don't or can't treat are the ones with psychiatric issues, you've absolutely closed your mind to the wide range of circumstances where that would apply.  Not what I expected from you.

[desrt]

I feel my post serves a useful purpose in that it invites those who say they "can't" treat to more thoroughly discuss the reasons why IFN seems to effect them in the ways it does. Almost invariably, any attempt to examine their underlying health conditions and environmental risk factors is met with hysteria and anger. I feel a frank discussion of *why* some seem to be more profoundly effected would be extremely useful. Never seems to happen though

Willy:
I realized after posting, that final line in my post would be misinterpreted. I'm not suggesting people go wait quietly in the TP line and contemplate their MELD scores. I'm saying people with uncontrolled anger issues they don't wish to deal with shouldn't be on IFN in the first place. Until they deal with those issues either with medication, therapy, or both they can research alternatives all they want.

As for Berkson, I'm a libertarian. I feel people should be allowed to spend their money any way they wish, They just shouldn't get their feelings hurt if someone wishes to examine their claims more closely.

[desrt]

I guess what I'm trying to say is, that I feel the time and energy that is expended on finding ways to *avoid* IFN were put into finding ways to work *with* IFN our collective knowledge could find some useful ways for people to treat who otherwise couldn't.
If the things I've posted were harsh, ignorant, and insensitive, I apologise.

[portann]

Hi MJ,

Thanks very much for posting about this - I think you're smart to do it and appreciate your input.

Best wishes.

[mj6000]

Thanks to all that understand my post.

[mhudnall]

In the interest of full disclosure, I am one of those who had to quit treatment due to extreme side effects. I am also using Dr. Berkson's methods as a part of my overall protocol, with pretty dramatic positive effects, as reflected in my labs. So my beliefs are based on experience, my lab results, and research into the science of the substances I use for therapy.

The thing that I find troubling is that absolutely definitive claims are being made on this thread that are not backed up. For instance, copyman said,

"...you will find most of the "knowledgeable" members will dispute the ALA claims. even the members with "brain damage" know ALA is a hoax. perhaps it is the ones who believe in this stuff that have the "brain damage" ?

Obviously a passionate statement such as that would hopefully be the result of a thorough examination of the literature. And yet, a search on PubMed produces reams of studies substantiating the extreme hepatoprotective effects of alpha lipoic acid. I could not not find study that proves, or even hints that "...ALA is a hoax."

Copyman, could you please direct me to a study that proves your claim about ALA being a hoax? If you have none, then would you please tell the board what leads you to believe this statement is true? I'm asking for your reasoning, not a political statement, please.

Please understand that I am no way disputing your claim. I am merely asking for clarification.

[zedd]

well I am new to all this and have never heared of ALA, I am confused alot on this forum as there is so many initials for things that I, as a newly diagnosed member dont know what they are. I am reading alot and this heated debate is quite interesting. I might get some ALA and give it a try, I am really itchy and doc said dosent want to start "tx"(?)
untill we figure out the itch. so if this might help, and it don't look harmful i think i will try some. Lord knows I've tried everything else out.

[Diane12855]

I wanted to thank you for the post too. We need to remember that there are new people joining every day, and some could well be people who can't do SOC and they are looking for something they CAN do.

The people that have been on here for a long time and seen this argument too many times to count could just go to another thread and ignore this one if they don't like it. Seems easy enough to me.

[mj6000]

First why is your Doctor not wanting to treat now? ALA means Alpha Lipoic Acid. It is used by people who mainly were not able to do traditional treatment with the drugs due to exreme side effects.I don't know about the itching issue. Going the traditional route with recommended drugs is always the way to go..."tx" means treatment.

[Diane12855]

This link will help you understand what you are reading better....

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

Hope this helps.