HR's supplements plus other anti-fibrotics

[mhudnall]

Let's try again. The following list of supplements are for those not currently on INF treatment. To be clear, no one is making the argument not to treat with INF. But if you are not on INF treatment, if you have failed treatment, if you cannot treat, or if you are waiting to treat, then these are supplements that may help your liver.


The following is a list of HR's list of supplements:

http://www.medhelp.org/user_journals/show/4497

They include:

"A multi vitamin/no iron

1000 mg of Salmon Oil (epa=160 mg / dha=240 mg / omega 3 = 400 mg) x1

1000 mg of Flaxseed Oil (ALA/omega 3 450 mg / omega 9 110 mg) x1
Raw flaxseed/ 1 teaspoon daily

Hepatapro PPC (900 mg) x 2
info:  http://www.medhelp.org/posts/show/346752 ; 


Resveratrol (500 mg) x1  and x2 (alternate every other day)
info:   http://www.lef.org/resveratrol/
source:   http://megaresveratrol.com/


NAC--(n-acetyl-l-cysteine) A sulfur compound that is a precursor of glutathione and protected sulfur-containing amino acid  (600 mg) x2 with Vit C (500 mg) x2
Info:   http://tinyurl.com/9yopf

TMG (750 mg) x 2
http://www.raysahelian.com/trimethylglycine.html

Taurine (500 mg) x 2
http://en.wikipedia.org/wiki/Taurine

Life Extension Super Curcumin W/Bioperine 800Mg 60 Caps (800 mg) x 2  / Powerful Antioxidant Properties to scavenge free radicals
Anti-Inflammatory Actions
Enhances important detoxification enzymes Curcumin increases the secretion of bile by stimulating the bile duct. It also protects the liver by detoxification, stimulating the gall bladder and scavenging free radicals. With the help of the adrenal glands, it inhibits both platelet aggregation and the enzymes which induce inflammatory prostaglandins. Curcumin may also help break down fats and reduce cholesterol. Large doses not recommended in cases of acute bilious colic, obstructive jaundice, painful gallstones, and extremely toxic liver disorders



Sylmarin (425 mg) x 2 / Milk thistle provides hepatocellular protection by stabilizing hepatic cell membranes.

Green Tea Extract (300 mg) x 2 /
info:  http://tinyurl.com/ypdp9q

Coq10 (200 mg) x 1 / http://tinyurl.com/29em8c


Colon complete complex contains:
Fiber complex (2000 mg) x2
Lactobacillus F19 probiotic (14 mg) x 2
Lactospore prebiotic (20 mg) x2

I use Smartbomb.com as a source except for the Resveratrol.

I will go with Lactulose amd Lactobacillus GG when I use up what I have."

_________________

Many of the above supplements on HR's list are anti-fibrotic and anti-inflammatory. He makes clear that they should not be used while treating with INF.

Here are some other anti-fibrotic substances:

Berberine
http://www.labmeeting.com/paper/29186388/sun-2009-berberine-inhibits-hepatic-stellate-cell-proliferation-and-prevents-experimental-liver-fibrosis

Cathepsins B and D
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2670444

Glutathione
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2670444

Genistein
http://www.ncbi.nlm.nih.gov/pubmed/19033130

Cysteine
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WBK-48DXPV0-6&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=be7a7987fef1cbd889d61489976a97da

Epigallocatechin -3-gallate
http://www.jbc.org/content/278/26/23381.abstract

Adiponectin
http://www3.interscience.wiley.com/journal/117899922/abstract?CRETRY=1&SRETRY=0

N-acetyl-cysteine

Best regards,

Mike H

[Willy50]

If you are considering treatment many of these could also help you in that quest as well.  

Gauf paid close attention to HR and just recently finished TX.  This time he was able to clear, stay clear and just today posted about his continued (undetected) success.

Willy

[mhudnall]

Good advice Willy.

I would also add Low Dose Naltrexone to that list.

That may be the most important, and biggest bang for the buck.

All safe and all effective.

Mike H

[GSDgirl]

mhundnall, Why exactly can't you treat and try to clear.  I am not saying supplements are not a good thing, I take them myself but why not try to clear the virus once and for all.  Use supps to build yourself up and after TX use whatever supps fit your needs?

Willy, have you treated yet?  Have you had a biopsy and if so what is your status?  Do you take a regimn of supps, I would like to know what your strategy is, it might be helpful to others.
Just curious

Denise

[mhudnall]

I'd like to make another point.

HR is a very good doctor who has taken the time to educate himself about beneficial supplements for the use of his patients. My doctor is also a very good, well educated doctor who has me on almost every one of the supplements on HR's list, plus many of the anti-fibrotics I listed, plus Low Dose Naltrexone.

These types of doctors practice what is called integrative medicine, which integrates holistic therapies (science-based supplements) with conventional practices (pharmaceutical drugs), to advance strategies that promote health. It is these doctors that use all the tools in the toolbox.

If your doctor does not tell you about supplements, does not mention diet and exercise, and does not seem to know about health, then maybe he isn't educated about all the things that can help you. Maybe he is using a toolbox that is pretty empty.

The average person does not have the time or the scientific background to discern what  supplements are good or bad. That is what integrative medicine doctors are for. If you want the most complete list of strategies and detailed knowledge of what supplements are safe and effective, I would suggest finding a good integrative medicine physician.

Mike H

[mhudnall]

Hi Denise,

I tried INF treatment and got to week 12. But I developed extreme autoimmune dermatitis. The soles of both feet developed quarter to half inch calluses that split and bled continuously. All the knuckles of both hands did the same. I had suppurating wounds at the base of my skull in the hairline that seeped serum continuously, trickling serum down the back of my neck constantly. Red itchy welts over three quarters of my trunk, arms and legs. I literally looked like the centerfold of a dermatology textbook. When I called my GE and told him that they needed to see this, he said, "Don't come in here - go to a dermatologist!" My six month post treatment exam consisted of a phlebotomy, then I was ushered to the door. No consultation, no strategy session, nothing. When I called for the results I was told my VL was 700 thousand. I later found out it was 7 million! The nurse misread the report. They are now waiting for me to get bad enough to get on the transplant list. Sorry to disappoint them, but I don't plan on that.

I still occasionally have outbreaks of these dermatology symptoms, even four years after treatment. Luckily, the Low Dose Naltrexone holds the symptoms at bay. But I still also have a hypothyroid condition, low DHEA, low unbound testosterone. low hemo panel (getting better finally) and suffered from chronic fatigue for years after tx. All of that was caused by treatment.

If I couldn't get past 12 weeks of INF/riba, I certainly can't get through INF/riba/PI. That's just the way it goes. That happens to a lot more patients than many people realize. And the attitude of many who were fortunate enough to be able to tolerate treatment is that those who couldn't just weren't tough enough. Just a bunch of babies!

Well for me, integrative medicine is all I have, at least until they develop non-INF drugs. Not holding my breath for that one.

Mike H

[Willy50]

GSD wrote:
Willy, have you treated yet?  Have you had a biopsy and if so what is your status?  Do you take a regimen of supps, I would like to know what your strategy is, it might be helpful to others.
------------------------------------------------

I'll be brief but there is not much to tell.  DX'ed in 2003.  Possibly infected mid 70's but unsure; never a IV user, non-military, no tattoos.
Good general health, 56 male, few co-mobidities/ extra-hepatic symptoms diseases.  P knop that can change.  Fibrosure in 2005 showed stage 1.  No other signs to suggest otherwise.  Biopsy 2008 June showed 1/6 ishak.  I dropped out of a Vertex trial since I felt that I could wait for a better TX.  Passed up another in Fall 2008.  I am a geno 1 watch and wait guy.

Why?  Why not treat now since my chances are possibly better than 50%?

I wouldn't treat for a year for only a chance of about 50% and increased chemo damage.  I prefer to wait for a shorter more certain treatment.  My staging suggests that I can wait.  The hepatologist who does transplants who performed my biopsy said that they expected a cure in about 5 years.  Several months later Josh Boger (past CEO of Vertex) mentioned that he felt that the Stat-C drugs (twin PI's; TVR and VX-222) might be approved in 2014; maybe 2015.  Obviously, there will be trials for those and many other drugs in FDA trials between now and then.

So far as alternatives..... I am on none.  I have in the past.  I feel as though one of the first lines of defense it to walk the line and try to eat drink and live, cleanly.  I do OK with that; non-smoker, non-drinker (except the rare occasion), decent diet, low BMI, light weight runner but last year did about a 24 minute 5K race and missed a 3rd place ribbon in my age demographic by 11 seconds; took it once though a few years ago.  I may be in better than average health than many my age.

In short, I don't feel that ALL people need to treat ASAP.  I feel that many people could benefit in waiting for more effective and shorter treatments.  We are all different and whether one treats or whether one waits there is an element of risk involved.

Oh yes..... I am treatment naive geno 1.

best,
Willy

[mhudnall]

You said,

"And HR can speak for himself should he choose to hiding a post under his name is just pretty childish don't you think?"

_______________________

The link is to one of HR's posts. So, that IS him speaking for himself.

And I think your strategy is clear. Attack, then report abuse, so the thread gets deleted. That's the purpose of your posts. To eliminate discussion. So I'll just be very nice to all of you from now on.

If you don't want to read the posts, don't read them. If you don't want to do supplements, then don't do them.

Lord knows, I don't read your posts unless they appear on one of my threads. No one is forcing anyone to read anything or do anything here.

Have a nice day!

Mike H

[evangelin]

Wow, I never understand this .  I carry no clout, but I still appreciate the information you have brought to this board.  Joe is taking his LDN and HR's supplements and continues to feel better after 15 grueling months of another failed Tx.  He is getting a little sparkle back to his eyes and I am totally enjoying his sense of humor again.  Perpetually nauseous people find it hard to laugh:>(.

I'm not sorry we tried again but I wish we could let the information flow freely for the non-responders or non- toleraters. It is so much less depressing when you feel like there is "something" you can still try to help your quality of life.
I wanted to also say that I think that Super-bio Curcumin or Curcu Gel are what HR suggested as the best.  The kind with Bioperine would be more absorb-able than plain Curcumin but not nearly as good as the first two.  That is the way I understood it at least.  Maybe Goofydad will happen by because I know he has this information also.

If anyone wonders... Joe was almost perfectly compliant for all 15 months of his Tx and he was for the first two tries also.  I always organized all his medicines and shots for him and all he had to do was swallow or shoot. I wished I could be sick for him too but I couldn't.    He was sick enough each time that I think it would have been hard for him to be this compliant if he hadn't had help.  Maybe he could have done it if he had to. We gave it our best each time but he just doesn't respond well enough to interferon to get the job done.

Joe is no doubt improving better than expected and I still have to think the LDN is part of this trend.  I have no proof though.  We won't have any labs to look at for 3 months.
Ev
Ev

[jdwithhcv]

I've been reading your responses to those who question and/or disagree with your position, and it seems you want them to ignore your posts.  Interesting position to take.  Typically men of science welcome and encourage peer review, as it tends to lend credit to their assertions that they have been thoroughly discussed and debated by their peers.  Yet you will brook no discussions, and those of your peers who question you are deemed to be attackers.  This makes me curious.  Could you please explain why it is so wrong to question you, and why it is an attack to ask you to back your assertions with facts?

I realize not everyone can clear HCV with inf/riba, and it sounds like your treatment experience was awful.  I also realize that supplements and alternative medicine can have a legitimate place in the treatment rubric.  But you would sound a lot more credible if you could endure the idea that some people require a little more proof than "because I said so."

I'm just saying...

jd

[mhudnall]

I think you missed the thread that was deleted this morning. There is a group here that attack all posts about supplements as "Snake Oil".  Also, "There is no scientific proof". But when you give you give them scientific proof, they then say its invalid, or not convincing, merely because they refuse to read it or they don't understand it.

They also accuse me of advocating not treating with INF. I have never said that or advocated that. But they attack my threads by inventing an argument that I never made and then attacking me for it. Their response to information on supplements also involve the claim that, "Nothing works for Hep c but INF." Obviously that is the only cure, but many of us cannot treat or choose not to. For those of us looking for options, the discussion is halted by these types of heated arguments.

So, what I am saying is, if you refuse to discuss the option of supplements and alternative strategies on their own merits, and you refuse to engage in the topic with an honest discussion, then please don't disrupt the conversations of those of us that want to. If the mere fact that someone is discussing things you have an emotional bias against, then maybe you should ignore the discussion.

Mike H

[smaug48]

Can we end the inflammatory remarks, sniping, and innuendo and stick to the subject of the thread, which is anti-fibrotic supplements?  Please?  It is tiresome to read.

I don't need anyone to act as a censor for me (including MedHelp!).

This is the Internet, folks.  Caveat emptor.

smaug

[copyman]

jd, just wanted to compliment you on how eloquent you are with your posts.  I would guess you have had some background in writing. You are very glib to say the least. keep up the good work

[mhudnall]

Yes, it did get heated this morning. That's why they deleted it. And since I don't want this one deleted, I won't make that mistake again.

I think it is best when the information gets out, even if you have to sift through the personal innuendos to find it. It's even better to actually have an intelligent discussion about it. To illustrate that point, please look over this post and review how many posts are about the topic, and how many are about me. I would love to stick to the topic. But that is very rarely allowed on this forum.

However, I do take issue with the remark about having something to sell. I don't remember ever telling anyone to buy from a certain vendor. In the link above, HR does; if you read my post I do not. I have said many times that I get my supplements from my doctor. That is another of the stock remarks that you guys always use: spammer, pyramid schemer, etc. If those accusations were true then you could easily guess what company I work for. Any takers?

Obviously, you are all in complete agreement that you are all very compassionate, kind, intelligent and objective people. Who am I to disagree? And so I wish you all the best.

Mike H

[FlGuy]

I'm not so sure that what mhunall discusses is snake oil.  And, the point is just that "we don't know".  Personally, I don't care if people take LDN or LSD or if it's TCM or an ICBM.  There are some people who are in a tight spot, hcv-wise, that may need to exhaust all possibilities and investigate maybe life-lengthening avenues that may be out there even if they are 'out there'.  It's up to each person to review, study, investigate, decide, accept or reject what they read or hear and seek knowledgeable advice.  And, knowledgeable advice is not necessarily found in this forum.

Escalting voices and anger are never convincing arguments to me, but the guy has the right to throw that stuff out there even if you don't agree with him and his stuff.  

[Willy50]

I agree w/ FlGuy.  

W

[mhudnall]

I agree and admit that I should temper my remarks and hold my fire, and I intend to do so in the future.

But to return to the topic, the gist of the issue is reversing fibrosis. For many who have achieved SVR, it has been shown that if the damage has not progressed too far, the body has its own mechanism to do that job. But for those who are still infected, the question remains - can you slow the progression of fibrosis in the presence of the virus? Can you stop the progression? And can you actually reverse fibrosis in the presence of the virus? Those are three distinct and separate questions.

Can the body's natural fibrinolytic process be aided or stimulated even while infected?

The answer may lie in the fibrinolytic supplements listed above. Or not. But if you are looking for strategies, it never hurts to narrow the search.

Mike H

[Willy50]

Could people please stay on topic?  

Further.....

I can think of a few respected members on this board who treated, SVR'ed and wish that they had waited to treat later.  

Many doctors..... some world renowned hepatologists....are suggesting to their patients that they are fine with waiting until the new PI's come out.

The vast majority of people who have HCV are waiting for something better.  PI's should be here in about 18 months.  I hardly think it's controversial to wait to TX.

Willy

[Marcia2202]

'The vast majority of people who have HCV are waiting for something better.  PI's should be here in about 18 months.  I hardly think it's controversial to wait to TX. *

That all depends what genotype you are. So far the PI's don't work on geno 3's, so I don't think we should generalize.

[GSDgirl]

willy, are you talking to me?  If so everything I wrote has to do with this topic.  When you treat or start a supp regimine maybe you can add something.  

The powers that be don't exactly know the long term effects if inf & riba (and they have been around for quite a whiloe) and you are advocating adding another TX with less known long lasting sides with less long term data.  I personally don't want to be a guinea pig, now if I was a 2 or 4 time relapser I would take the jump.

Do you know your liver status via biopsy to know that you shoulod even wait?

Have a great day
Denise

[jdwithhcv]

While it is hoped that PIs will be available in 18 months, there is no guarantee that they will be approved then or ever.  There have been drugs which have been in the final stages of the approval process but were abandoned at the eleventh hour for some reason or other.  

Furthermore, the topic is antifibrotics and supplements, so your PI post is no more "on topic" than anybody else's.

[nygirl7]

'The vast majority of people who have HCV are waiting for something better.  PI's should be here in about 18 months.  I hardly think it's controversial to wait to TX. * "

No I really don't think that is true - most people when they find out they have the disease in later stages just listen to their doctor and do what they are told to do to save their lives or what is left of their livers.  Most people aren't like us, obsessed and educated in their own disease.  Most people still just trust their doctors like they are God and it wouldn't occur to them to think otherwise or to judge what they say.

and all I gotta say is wow.

Could people please stay on topic? "

Must be fun living in your house.

[Willy50]

Marcia, You are correct but Denise was telling Mike he should give TX another shot.  I believe he is a geno 1. (applicable in his case)

It looks as if somehow her post is now gone.  It preceded my last post.

Denise, I wrote you in an earlier post that I had a biopsy in 2008; 1/6 ishak.  It's in this very thread.

Willy

[mhudnall]

Hi Denise, I would love to have a civil conversation with you, and I often do with many people on this board, believe it or not. I admit, I can be as argumentative as the next guy, and often pretty eloquent in my language. But maybe you should look at the posts where I get into arguments and see where the conflict starts.

That being said, I agree that I should just not engage when provoked. Getting into a heated argument serves little purpose and there is no winner in an exchange like that. I will try to do better.

I think you misunderstand my post about my treatment experience. The phlebotomist I was referring to was the in-house phlebotomist for blood samples at my Gastroenterologist's office. I was there to get my 6 month end of treatment blood draw for my lab samples. There were no iron issues. There was also no consultation when I quit treatment, or when I went in for that six month EOT treatment blood draw, or even when I got my six month EOT lab results from those lab tests.

The point is that when I was in crisis from treatment, they didn't even want to see me. In fact, they flatly refused to examine my issues, telling me to go to a dermatologist instead. It was obvious to everyone that the dermatology issues were a reaction to treatment. The dermatologist said that these were untreatable issues and they were dangerous, but the only way to stop them was to quit treatment. She had a palpable expression of relief when I said I would. But through my whole treatment, my issues were addressed by a shrug of the shoulders by my GE, most times over the phone.

I also should state the obvious fact that these guys were possibly the worst doctors on the planet. I'm positive that most physicians are better. But, it happens.

My intolerance to treatment was the result of autoimmune-possibly allergic problems brought on by treatment. I still get them occasionally - my knuckles swell and split and sometimes still get a rash. But since the symptoms occurred so radically with just INF/riba, re-treating would almost certainly produce the same results, just faster and probably more radically. So that option is off the table for me.

The question about treating or not to treat is the one that concerns many people on this board, and it is the concern that many responsible people on this board question about my posts and my motives. I have heard from some people on this board privately, who I respect a great deal, who are concerned that putting out this kind of information, while it may be useful to people in my situation, may dissuade people who should treat not to treat.

I understand that, and that is the basis for your concern. I also understand that reasonable people with the best intentions are worried about this. I also understand that these concerns are exacerbated by the arguments that LDN is effective. The chance that LDN is effective magnifies those concerns. It would be much easier if LDN was demonstrable ineffective rather than possibly effective. It would be better if it were like milk thistle that helps a little bit, and not a lot.

So let me tell you my thoughts on this. I never say not to treat. That would be totally irresponsible. I also never say to treat. I believe that is also irresponsible. That is a very difficult personal decision that should be made between a doctor and the patient. The negative consequences of treating and failing are part of the equation, and they must be weighed against the positive chances of being cured. Both sides must be weighed in the decision. There is a fifty-fifty chance that it goes either way.

I just could never in good conscience push someone one way or another. I don't have an opinion on a very important question like that. Consider that if that person fails treatment, and suffers for that decision. What if the failed treatment really gave him a big push in the wrong direction and made his condition worse? I would not want that responsibility. I also would not want the responsibility of telling someone not to treat, and have him miss out on a chance for a cure. INF is the only shot at that.

That's why doctors get paid the big bucks. Let them have the responsibility. And frankly, what good would it be to add my voice to the huge number of people here who give advice to treat to everyone who comes on the board? I never participate in those threads for a reason. I support everyone's choice. But I think they have to make it on their own.

If they don't treat though, or they can't, or if they are in between efforts, then why not give them advice on how to help themselves? And should I suppress the information to people who really need it and really could use it, so that people don't get influenced in their decision? I think not. I think it is just more information, and the two strategies are not mutually exclusive. They just can't be used concurrently.



Mike H

[IMstacie]

I appreciate the list of supplements. I made a copy, before this post gets deleted, to research on my own.  (everyone seems a little irritable).

Regarding stopping or not treating, I personally would never even assume what another person could or could not do.  I have completed a horrible 46 wks of treatment myself.  I personally know those who have completed with no sx and others who had to stop because of sx.  Treatment has humbled and educated me, I can be more than empathic on this front.

-------  You mentioned "when I was in crisis from treatment, they [the dr.] didn't even want to see me".  "...issues were addressed by a shrug of the shoulders".   ------

These statements seem like the norm to me from the majority of posters on this forum.  I learned the same thing pretty early on from my doctors and used this forum to help myself.  

It's because of those issues I think everyone should compose a detailed or summary letter after or during treatment.   The letter/document should be submitted it to their doctor, health/medical group, insurance company, pharmacy, and maybe a little further.  I'm not saying to submit a complaint but information to enlighten these organizations.

Stacie