mhudnall and Dr Berkson

[Willy50]

I'm very pleased to see that the thread was restored.  

Deleting such threads destroys many hours of peoples work.  It can really be disheartening to see a thread such as this deleted.

Thank you Med Help.  
Thank You all for keeping the tone of the thread within bounds.

....and I also wanted to bump this thread closer to the 200 post mark so that it will load easier.       ; )

Willy

[mhudnall]

Thanks to the reinstatement of the thread, now we can keep on with the discussion.

NYgirl said to Kconn:

"Honey - perhaps someone with a lighter degree of liver damage might be able to try something alternative but you are really, really running out of time now.  Are you sure you won't consider what the doctor has advised?

More and more people ARE getting cured these days as they learn more about this disease and how to treat it...did you at least get a second opinion or bring this information to your doctor to see what he feels?"

Could I infer from those comments that you think people with lower staging should try LDN, but people with higher staging should not?

Frankly, I can't think of a time when a log 10 drop in viral load, lower inflammation (enzymes) and movement towards normalization of liver functions wouldn't be valuable. Even if you were to choose treatment, wouldn't those values reflect a greater chance of success going into treatment? All of those lab values happened in the first three months for me.

Also, your comment about increased success rates are not something I have heard about anywhere else. Is there something I am missing? Further, I believe Kconn said pretty plainly that she is talking with an assortment of conventional doctors and hepatologists. You act as if this were some kind of Chinese herb or something. My doctor prescribed it for me for my hep c. He's an MD with a PhD, not an uncredentialed acupuncturist.

Best regards,

Mike H

[annieCinMD]

Looks like you guys got "reappeared"! I'm glad.

[nygirl7]

Could I infer from those comments that you think people with lower staging should try LDN, but people with higher staging should not? "


Absolutely positvely without any doubt in the entire universe I believe that this person with advanced liver damage needs a legitimate real scientifically and medically proven CURE.  Lowering enzyme levels and viral load is not going to do anything when someone is already cirrhotic and you know that.  This is why this 'alternative' medicine is so dangerous - someone with little damage and time to play around is one thing but someone who's already at the point of cirrhosis who is being advised by a MEDICAL DOCTOR to begin treatment at once? Absolutely totally and unequivocally NO.

I had a ten log drop of my liver enzymes the very first test I had after beginning treatment.  From the high 200s to the low 20s.  They have stayed that way for over two years now with no medication left in me to keep them there.  So yes I believe ten log drops are quite possible but if you are not cured............really don't mean all that much do they?

And if you read my statement correctly as I've stated numerous times  - I have said that I have noticed in here that those who are educated, read the studies and do a more proactive version of managing their own medical care making sure it is tailored to them definitely there is a higher rate of success than in the 'outside' world.  It's very easy to see as you read all the people you've known for years write SVR SVR SVR and lately there have hardly been very many relapses at all.  Compared to five years ago when I started on this forum to learn about this disease.


by the way may I ask you is there another doctor that is able to prescribe any of these specially made medications or it is only Dr. Berkson?

[Upbeat]

Why is it you think everyone can be cured with TX?  You never talk about the non responders or options for them. You only continue with your praise of TX.  For you and the ones like you that treatment worked there is just as many that it didn't.

[nygirl7]

For you and the ones like you that treatment worked there is just as many that it didn't. "

Not talking about people who cannot be cured via treatment.  Not talking about people with very marginal liver damage as well.  Talking about the people as above with late stage damage liver cell death that are so desperate after reading the horror postings about interferon on this thread that they negate clinical medicine in lieu of an easier alternative because they've been scared and haven't the ability or desire now to try it.  Big difference right there.

That is emotional blackmail.  

Plenty of people are scared and desperate for something eaiser.  But if they are close to becoming cirrhotic or are cirrhotic - no they don't go into the database where it's ok to take all the coffee enemas you want to because they are sufficient   They are not.  At this point it becomes dangerous to their lives.

THAT is what I am talking about.  All the five posters on this thread who were not able to achieve SVR good to everyone for trying and believing in something. Nobody is negating that.  I'd do it something if there were no viable alternatives  and I had to wait for PIs and couldn't get into a trial somewhere.

But interferon "itself" is not the big bad monster you make it out to be.  Not saying it works for ALL but saying it's big pharma tricking us little sheep just makes me crack up.  UFO's and government conspiracies are Rockers thing so leave them alone, ok?

[it'sallgood]

thank you one and all for contributing to this thread and thank you medhelp for reinstating it.   the fact remains that very few of those infected with HCV worldwide will ever have access to the treatments available in the US.   and even in the US the following study found that only 0.7%  of those identified with HCV achieved SVR.
http://journals.lww.com/aidsonline/pages/articleviewer.aspx?year=2006&issue=11280&article=00013&type=fulltext

we need to find low cost treatments that raise the quality of life for those that are experiencing this disease world wide.   thank you to all those guinea pigs out there that are willing to experiment with safe therapies that may add useful years to their lives.  and please keep us informed of your findings.

[comeagain]

I have been treating twice alltogether 72 weeks.
After first tx 3-4 months post i felt better then in 25 years  allthough I relapsed.
10 months after first tx ended I started a new one 48 weeks long and with both more riba and interferon and I SVRd

The other day when I was shaving and cut my self,. i noticed I was looking at the blood I saw in the mirror in a different way.
It wasn´t an unpleasan´t sight as it has been for many years because I know it was clean from viruses and that was a new and very pleasante feeling.

Before that I always got worried when bleeding having three children and all.

Not have to worry anymore made me think it was all worth it allthough i still have sx 8moths post, or is it old age( i´m 56 soon) probably a combination.

I know there is people how feel bad after tx both among them who has SVRd and those who have relapsed.

I´m gonna try this LDN and if it can help me with my muscle, joint and bone pain also with fatigue, general stiffnes  and depressiv thoughs I will be much greatful.

If it don´t help I wont get demastated, all my research this far shows it quite harmles
specially since i have no thyroid problems.

Also people how do not clear or can`t  take the soc medications, might try it IMO.

That is after consulting their docs of course, and why don´t you do as I have done pretend you wanna have the big dose 50mg a day and if you get green light on that I
supose their no crossroads where you driving with 4.5 mg a day.

I wanna make it clear that LDN is not a cure for HCV but could be something to take in wait ( and thats sometimes a very difficult and personal decision I can imagen)for new more effectiv meds thats shortends  the tx time aswell as gets more people cured .

I think its importent when people how never has been on soc or just for a short while ,makes that clear when participating in this kind of debate treat or not treat, also tell what really happened why they couldn´t continue with treatment.

ca

ca

[Bill1954]

“One hundred and eighty-five (67%) of 277 referred kept their appointment, of whom 32% failed to complete a pre-treatment evaluation. Of the remaining 125, only 69 (55%) were medically eligible for treatment, and 29 (42%) underwent HCV treatment. Ninety percent of 29 were infected with genotype 1 and 70% were African American; six (21%) achieved sustained virologic response (SVR). Only 0.7% of the full cohort achieved SVR.”
~~~~~~~~~~~~~~~~~~~~~~~~
Wow; talk about manipulating statistics :o). Only 0.7 of the *full cohort* achieved SVR; the study results state that of the 42% that DID undergo treatment, 21% achieved SVR. This is consistent with the participants… 70% African American, HIV/HCV co infection, and predominant GT-1 are all negative predictors for sustained response; I’m surprised the numbers were as good as they were. It isn’t fair to say this represents the average HCV patient, if that was your intention.

Bill

[nygirl7]

Ninety percent of 29 were infected with genotype 1 and 70% were African American; six (21%) achieved sustained virologic response (SVR). Only 0.7% of the full cohort achieved SVR.”
~~~~~~~~~~~~~~~~~~~~~~~~

Wow talk about working against a stacked deck - that is just unbelievable the way those numbers were presented to make a case.  Not surprising.

[Myown]

Yes thanks mike and thank you MedHelp for putting the thread back up!!!

[Rockerforlife]

HEY

UFO's and government conspiracies are Rockers thing so leave them alone, ok?

i heve never spoken about UFO`s or had any discussions on this site.
As for the govt policies regarding heath issues and so forth,yes,i do belive the system is corrupt.

[Upbeat]

Still be careful with your blood.  Ask your doctor if he would take a blood transfusion from you.  Now with these stats,  it goes to show you that you can manipulate any numbers.  The drug companys do the same thing with their trials.  Even with the PI's the numbers wouldn't look as good if they let everyone in.

[it'sallgood]

i apologize.  i was looking for a study i heard about on the clinical care options site a couple of years ago.  a blue ribbon panel of liver docs was talking about the burden of liver cancer.   they cited a study from kaiser permanente that stated of those identified with hcv in northern california only about 6% achieved svr.

[mhudnall]

You say,
"So yes I believe ten log drops are quite possible but if you are not cured............really don't mean all that much do they?"

Well, it is not obvious to me that lower viral loads and lower enzyme levels are not immensely therapeutic, even if you still have the virus. Why do you assume that they are irrelevant? Are low viral loads equal to high viral load? Is it just as good to have more inflammation as high inflammation?

Let's look at the reverse of your argument. Say I started with a VL of 70,000 and took LDN. Then they shot up to 7 million and my enzymes increased as well. Would that still be irrelevant? You can't have it both ways.

And yes Bill, I agree with you. The success rate is about 50%. Unfortunately, I, like many people, are in the bad half of the equation.

I look at my lab results as evidence that my rate of progression has slowed tremendously. No, that has not been proven in clinical studies, but neither has the opposite. The reason that I believe LDN is making positive changes is because LDN optimizes the native immune system. It is not a mere antiviral drug. The positive movement in my labs reflect that fact that my immune system is working better, not that the viral loads are being artificially manipulated by a drug.

And nygirl you ask,

"by the way may I ask you is there another doctor that is able to prescribe any of these specially made medications or it is only Dr. Berkson?"

I don't go to Dr. Berkson, my doctor is in Washington state. I never heard of it until he prescribed it for me. There are thousands of doctors prescribing LDN for a variety of incurable diseases. LDN has gone through phase one clinical trials for Crohn's disease, with a 2/3 remission rate in 3 weeks. And yet, even with the ample evidence available, conventional doctors still ignore it and treat with steroidal anti-inflammatories and bowel resection instead. You have to find a doctor who is ahead of the curve, and who does not take his marching orders from the mainstream and the drug companies to do the right thing. The clinical trials on MS have been done and will be published soon. But the initial reports show great promise. In both of these cases it was the patients who pushed the doctors to try LDN and to finally look into it.

The reason that progress has been so slow in research is that the drug patent has expired, so the drug is in the public domain. The drug companies don't want a cheap drug out there outperforming all their other drugs that don't work so well. That is also why it is so inexpensive. But if the patent was still active, I bet there would be a ton of research, TV ads blaring every hour, and the capsules would cost a thousand dollars each.

Best regards,

Mike H

[Bill1954]

Hey, no problem :o). I wasn’t certain what you were trying to project; but it seemed to me an unfair characterization to use the cited study as an accurate cross section of the HCV patient.

I hope everyone in here eventually figures out how to find a cure; it must be extremely frustrating not being able to work within the standard of care provided by allopathic medicine. I had to undergo two sessions of interferon/riba, but count myself very fortunate to have this behind me now. My heart goes out to those still struggling—

Bill

[Rockerforlife]

If i dont show UD this friday,,i will have no choice but to check out the LDN,at least until im accepted into another trial or i can find a job that has insurance.

[nygirl7]

I think I"ve said enough already and will let the few of you who feel they need t
o keep discussing ithe same thing over and over do so in peace.  
I figure if you are desperate enough you will do about anything in life to stay well so I wish you the best of luck with that.  

I mean that sincerely - if I had not SVRd I would be trying anything that came around that I thought possibly could keep me well - even if it was just hopeful thinking until I could get the PIs and be really and fully cured.

It is completely understandable in the end, I just hope late stage liver damage progressed people will remember that this is not the place for them without seeking a real medical CURE.

Good luck.

[mhudnall]

Actually, the Crohn's/LDN story is pretty relevant to this discussion.

LDN has been used for Crohn's for about ten years. Clinical trials only got done last year. Before the clinical trials were done, can you imagine the ordeal of the Crohn's patients who wanted to check out LDN? Can't you just hear the naysayers, "That's a magic pill! There is no scientific evidence that this stuff works at all! It's a damn fairy tale. You need to get into the hospital right now and have about 12 inches of your bowel surgically removed, and then get on steroids! Yeah that's harsh, but its the only chance you've got!"

Now, the clinical trials are done. 2/3 in total remission in 3 weeks. LDN failed to help only 12%. No side effects, and the real possibility that their Crohn's is gone forever.

In the ten years before clinical trials, how many Crohn's patients are ecstatic that they made the choice to try LDN? And in the last year, how many patients are infuriated that they were cowed into not trying LDN and have been left crippled?

It's may not be apples to apples, but it may be closer than you think.

Mike H

[Rockerforlife]

Mike,here in Canada LDN IS precribed legally,do you know if its sold as a supplement anywhere?It goes by the names .VIVITRAL and REVIA

[mhudnall]

Rocker

Here in the US it is also legal, but by prescription only. However, the drug companies only make the regular dose form - 50 mg. So in the US, the prescription is faxed to a compounding pharmacy that converts the 50 mg form into low dose form 1-4.5 mg and ships it to your home. Still, the cost is only $30 per month without insurance.

Mike H

[kconn14]

When I was researching on the internet I found several Medical Doctors who use the same regime as Dr. Berkson, with a great deal of success.

to nygirl;

I appreciate your input and I value it. This is all pretty new to me and I can tell that you have been dealing with it and recovery for awhile and are being helpful. Thank you.
I do realize I don't have a lot of time to fool around and I am scheduled to have a consult with a hepatologist. I'm also checking with a local researcher regarding clinical trials for which I may be eligible. I just ordered some European ALA and even if I have to do the normal tx I will take some of the supplements to give my liver some additional relief.
Hospitals and Medical doctors are the reason I have the virus however, they were bust saving my life at the time so I'm not bashing them, they weren't testing for the virus when I contracted it.

I'm just casting about looking for something that will work and not wipe me out at the same time.

I thank you all for your valued input and will continue to come back for feedback.

Karen

[mhudnall]

Good luck to you Karen!

I'm sure we will all support your decision, whatever that may be.

Best regards,

Mike H

[mhudnall]

In the other thread, rocker brought up the "Blacj Box" FDA warning on natlrexone. I posted information there that the warning has been pretty thoroughly discredited, but I thought I should post it here as well.

Unfortunately, the FDA Naltrexone ‘black box’ warning about the possibility of liver issues can be very misleading when investigating Naltrexone or Low Dose Naltrexone because it does not provide the scope or dosage on which the warning is based.   The below is information about the Black Box warning – it is based on a clinical study where patients were taking extremely high dosages of Naltrexone (300 mg a day) and a sub-set of obese patients developed some liver anomalies.  Additionally, included below are 4 subsequent National Institutes of Health / National Library of Medicine Clinical Studies or Articles that specifically discuss the safety of Naltrexone to the liver, when used below 300 mg a day.  

Therefore, according to the below studies, the dosages of Low Dose Naltrexone (LDN), which are a very small fraction of either a regular or high dosage of Naltrexone, could be presumed to have no negative affect of the liver.   Note: The normal LDN dosage for adults is 4.5 mg or less per day, which is 1/66th of the maximum safe dosage level.  For children the normal dose is between 1 mg (1/300th of the maximum safe dosage) to 3 mg (1/100th of the maximum safe dosage).  

Also, the immune modulating affect of the opioid antagonist, Naltrexone, have been shown to improve the liver’s condition, including reducing ALT/AST levels, cholestasis-induced liver injury, liver fibrosis, and hepatitis.   Those clinical trails will be posted separately under the “Files” Yahoo Group Section (under the “Treatment-Low Dose Naltrexone” Folder).  

The following is an excerpt from the National Institutes of Health/National Library of Medicine/Daily Med Website (http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=4682)

“Evidence of the hepatotoxic potential of naltrexone is derived primarily from a placebo controlled study in which naltrexone hydrochloride was administered to obese subjects at a dose approximately five-fold that recommended for the blockade of opiate receptors (300 mg per day)..”


The below four (4) clinical studies are quoted from the National Institutes of Health / National Library of Medicine/Pub Med Website:   (http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed).  


Study 1 –

Study of hepatotoxicity of naltrexone in the treatment of alcoholism.

Alcohol. 2006 Feb;38(2):117-20. Links

Yen MH, Ko HC, Tang FI, Lu RB, Hong JS.
Department of Pharmacology, National Defense Medical Center, Taipei, Taiwan.

Since a black box warning was issued by the Food and Drug Administration regarding the use of the opiate antagonist naltrexone (NTX), many clinicians have been concerned about current labeling of the potential hepatotoxicity risk of NTX in the treatment of opiate dependence and alcoholism. Despite many reports that demonstrated that the use of NTX did not cause elevation of liver enzymes, controversy concerning whether NTX is hepatotoxic continues. The current study monitored 74 alcoholic patients who received 25mg of NTX daily in the first week and then 50mg of NTX daily for the rest of the 12-week period. After the 12-week treatment, levels of the hepatic enzymes alanine aminotransferase (ALT) and aspartate aminotransferase (AST) did not show any elevation, except in one subject, and the results strongly support that NTX did not induce abnormalities in liver function tests or elevate the liver enzymes. Instead, a statistical significance of decreasing levels of ALT and AST in the liver was shown throughout the study. These findings provide further support that NTX is not hepatotoxic at the recommended daily dose and may be beneficial for patients with elevated liver enzymes.

PMID: 16839858 [PubMed - indexed for MEDLINE]

Study 2 -  

High-dose naltrexone and liver function safety.

Am J Addict. 1997 Winter;6(1):21-9.Links

Marrazzi MA, Wroblewski JM, Kinzie J, Luby ED.
Department of Psychiatry, Harper-Grace Hospitals, Detroit, MI, USA.

Studies have found naltrexone useful in the treatment of diseases other than opiate addiction in which endogenous opioids presumably play a role, such as alcoholism and eating disorders. Some of these studies involve high doses (100-200 mg bid). Because investigational studies with high doses (300 mg/day) reported clinically significant increases in liver enzyme levels, the authors measured a spectrum of liver function parameters in response to high doses of naltrexone in a double-blind, crossover trial (100 mg bid) followed by an open-label period (200 mg bid). They observed no adverse clinical or laboratory changes in liver function in association with high-dose naltrexone therapy in eating disorders.

PMID: 9097868 [PubMed - indexed for MEDLINE]

[mhudnall]

Here's the other two studies:

Study 3 -

Naltrexone: report of lack of hepatotoxicity in acute viral hepatitis, with a review of the literature.

Addict Biol. 2004 Mar;9(1):81-7. Links

Brewer C, Wong VS.
The Stapleford Centre, London, UK. ***@****

Many clinicians appear to be concerned about the potential hepatotoxicity of the opiate antagonist naltrexone (NTX) and this may be one reason why it is not used more widely in treating both heroin and alcohol abusers. Some much-quoted early studies noted abnormalities in liver function tests (LFTs) in very obese patients taking high doses, although there was no evidence of clinically significant liver dysfunction. These concerns may be reinforced by advice in the UK product information sheet to perform LFTs before and during treatment, by high infection rates with hepatitis C virus (HCV) among injecting heroin addicts and by the frequency of abnormal LFTs in alcohol abusers. We describe a heroin abuser in whom clinical and laboratory manifestations of acute hepatitis B and C appeared a few days after the insertion of a subcutaneous naltrexone implant. A decision was made not to remove the implant but the hepatitis resolved completely and uneventfully well within the normal time-scale. A review of the literature indicates that even when given at much higher doses than are needed for treating heroin or alcohol abusers, there is no evidence that NTX causes clinically significant liver disease or exacerbates, even at high doses, serious pre-existing liver disease. During the past decade, NTX has been shown to be safe and effective in the treatment of pruritus associated with severe jaundice caused by severe and sometimes life-threatening cirrhosis and other liver diseases. Its safety, even in these extreme conditions, is particularly reassuring. We suggest that it may be more appropriate and economical to advise patients to report promptly any suspected side effects than to perform regular LFTs, which may be misleading.

PMID: 15203443 [PubMed - indexed for MEDLINE]


Study 4 -

Safety of high-dose naltrexone treatment: hepatic transaminase profiles among outpatients.

Clin Neuropharmacol. 2006 Mar-Apr;29(2):77-9. Links

Kim SW, Grant JE, Yoon G, Williams KA, Remmel RP.
Department of Psychiatry, Medical School, University of Minnesota, Minneapolis, 55454-1495, USA. ***@****

OBJECTIVES: This study was carried out to test the hypothesis that the hepatic safety profile of prolonged high-dose oral naltrexone (150 mg/d) is acceptable if over-the-counter analgesic use is restricted.

METHODS: Data from 41 consecutive outpatients with impulse-control disorder receiving naltrexone therapy were analyzed.

RESULTS: The mean treatment duration was 328 days and the mean naltrexone dose was 142 mg/d. Pretherapy/posttherapy mean aspartate transaminase and alanine transaminase levels in the naltrexone-alone group were 21.79/22.54 and 21.74/21.49 U, respectively (all within reference range).

CONCLUSIONS: Although limited in scope, these findings support the hypothesis that long-term use of high-dose oral naltrexone is safe in otherwise healthy patients with impulse-control disorders who restrict their intake of acetaminophen, aspirin, or nonaspirin nonsteroidal anti-inflammatory drugs (NSAID). However, confirming studies are needed.

PMID: 16614539 [PubMed - indexed for MEDLINE]




In other words,

The sole basis for the black box warning is that in one study of obese patients given 300 mg doses of naltrexone, a small number of the study group developed elevated enzymes. I take 3 mg. Low dose naltrexone is between 1 mg and 4.5 mg. Regular dose naltrexone is 50 mg.

The studies above show that the one study from which the black box warning was founded have been contradicted in subsequent studies.

Best regards,

Mike H

[it'sallgood]

one of the things that concerns me are the reports of insomnia with the ldn.  the lack of deep sleep would likely reduce the secretion of human growth hormone and thus reduce liver regeneration.  do you experience insomnia on the ldn?

it sure would be interesting to do an in vitro experiment with one of the hepatitis c models like was done with alinia to test the antiviral effects of ldn.  

[mhudnall]

Yes, some patients experience sleep insomnia, but more often patients experience vivid dreams. In most cases this goes away after the first week.

I never experienced that. In fact, I eventually began to sleep much better than I have in decades. Now I generally sleep seven hours straight without waking, very rarely do I have to get up to urinate, and that is one of the real positive effects I feel from LDN.

But everyone is different.

By the way, there are more studies on LDN and liver health, but they are in word doc form. I could send them to anyone interested.

Best regards,

Mike H

[Rockerforlife]

Send em my way
Thanx

[it'sallgood]

opps,  well obviously if endorphins are somehow responsible for the reduction in viral load then an in vitro test involving hepatocytes would not show much in the absence of the necessary neurotransmitters.   anyway keep on the good work guinea pigs and please report your findings. inquiring minds want to know!

[it'sallgood]

thanks mike,  i would love to take a look at 'em.
eric

[Rockerforlife]

I mentioned the LDN to my healthfood store lady and she knows quite a bit about nutrution and foods ,herbs,shes the one who turned me on to the blue green algae  extract,actually ,its freezed dried...she never even heard of the LDN but shes very interested.The biggest problem is most people think your va wako if you tell some" hidden" cures

[mhudnall]

Hey guys,

If you send me you regular email addresses in a private message I will send the docs as an attachment.

Best regards,

Mike H

[copyman]

LDN = snake oil

[Willy50]

Now now....

I surely don't know the answer.  You *could* be right.  At this stage there is little evidence but in time the evidence will manifest itself.  In the meanwhile here is some anectdotal evidence and commentary....and some back and forth.  No big deal I think.  Very few people will read this and be swayed to act.  Even those who do must act through a doctor, I believe.

If memory serves at one time there was no TX for HCV.  Someone had the idea of using IFN to treat HCV.  Here it was .... a failed drug of sorts being used for a treatment in which it was only marginally effective and yet a very tough and abusing form of TX, and one that was not even very safe.  I've heard it referred to in several ways;

A drug in search of a treatment.

The cure being worse than the disease.  

One could have easily called it snake oil at the onset.  The cure rate was about 10% (but it was a cure; the only known one at that time)

It didn't get easier when they added "anti-freeze" to pegalate it.  One could use one's *common sense* to reason it was just more poison added to poison.  
And yet the cure rate increased.

I was just reading that there was a lawsuit over thalidomide.  Here was a drug....with a terrible history..... and someone recycled it using it to treat a cancer. There is currently a lawsuit over it since it was very successful and someone wants a "cut".  My point?  One never knows.....

Also...... the first patient that tried it......the drug failed on him; he died.  One could form a conclusion at that point, right?  
In this case however, the drug was tried on other cancer patients and shown to be effective.  I believe it is now a recognized form of TX for the specific type of cancer.

My point; one never knows sometimes even after one knows and has proof one is right.

I don't know the answer about this drug and this type of TX.

I think I support the notion of scientific inquiry into it's usefulness however.  Someone else is doing the heavy lifting and the HCV infected will get the benefit. (whether proven or discredited)

Time will tell. You could be right.

Then again......

best,
Willy

[mikesimon]

I would like to see something concrete but all I see are claims that "I feel good". I felt good - I mucked stalls for 3 horses twice a day and I warmed 2 horses up and rode them and then cooled them down at least 5 times a week. I kept 35 acres cut and 10 of them manicured. I rode my Harley everywhere......and then I had a major esophageal bleed and lost 4 units of blood. Up until then I felt fine. I felt pretty good 2 months later when I had my second massive bleed. In fact 5 years later I felt good enough that I was riding my motorcycle with a vibrating beeper down my pants waiting for the call that they had a liver the day before I was transplanted. So feeling good is nice but that really doesn't mean your liver is healthy. And I know that for certain.
Show me something - Fibroscan, Fibrosure, lab ratios - something.
I looked carefully at your platelet counts and I saw nothing remarkable there certainly nothing that suggests improved liver histology. The best that can be said, on the basis of platelet count alone, is that there doesn't appear to be any decompensation.
If you were just treating yourself I would never dream of asking for some real evidence but that is not the case. You are here trying to influence people who may be in a desperate situation and you have practically nothing to support your claims. I would expect that, if a person was as passionate as you appear to be about LDN and was trying to influence people's hopes and behaviors, then you would trouble yourself enough to be able to show some documentation. Your approach seems rather cavalier and that would be fine if you weren't pitching LDN so passionately. I think you owe the members here more than a proclamation that you feel better.
By the way, I have been giving you the benefit of the doubt but sooner or later you have to show us something solid.
Mike

[copyman]

well put mikesimon. couldn't have said it better myself

[Willy50]

I also think Mike S. makes a good point..... but.....

Anectdotal evidence is not always compelling evidence not only because it is often subjective.  It's only one case.
I think right now over 2000 people have dosed Telaprevir.  We will await the FDA to see if they can reach a conclusion about that drug.  I think it's silly to think that we can reach a conclusion about this tx and either support it or villify it.
       Lol; we are laymen and this is the internet.  ; )

Even if Mike M has terrible labs....or excellent labs the conclusion *should* remain muddy.

I'm more interested in seeing what the results are for 100 people with ample testing before, during, and after.  Then I think we'll truly "know" something and perhaps not till then.  

I'm still interested though.......

best,
Willy

[Upbeat]

You people that put down Dr Berkson's approach need to look at his results. Its all there for you to see and has been for over 30 years. There is an old saying that there is more than one way to skin a cat.  These trials are biased.  When you have to exclude a group because they may not repond the way you want  how can you know what the real results are?

[mhudnall]

Hey Mike,

Okay, I have a phone consultation set up with my doc for when my labs come in-around Labor Day weekend (I just gave blood yesterday). I will ask him to order a fibroscan. It's just money, but you are right, it will do no harm, so why not?

However, I do disagree that my labs are simply me "feeling good". Huge improvements in viral load, enzymes, and clotting times are not subjective.

I'll let you know.

Mike H

[mhudnall]

Mike,

A lot of people claim that there is no science behind naltrexone. This is not the case. If you would like to see some of what is out there I would be glad to send them to you.

Here's one study, but there are more:

Naltrexone, an opioid receptor antagonist, attenuates liver fibrosis in bile duct ligated rats.

Gut. 2006 Nov;55(11):1606-16. Epub 2006 Mar 16.

Ebrahimkhani MR, Kiani S, Oakley F, Kendall T, Shariftabrizi A, Tavangar SM, Moezi L, Payabvash S, Karoon A, Hoseininik H, Mann DA, Moore KP, Mani AR, Dehpour AR.
The UCL Institute of Hepatology, Department of Medicine, Royal Free and University College Medical School, University College London, Rowland Hill St, London NW3 2PF, UK.

AIM: The aim of this study was to investigate the hypothesis that the opioid system is involved in the development of hepatic fibrosis.

METHODS: The effect of naltrexone (an opioid receptor antagonist) on hepatic fibrosis in bile duct ligated (BDL) or sham rats was assessed by histology and hepatic hydroxyproline levels. Liver matrix metalloproteinase 2 (MMP-2) was measured by zymography, and alpha smooth muscle actin (alpha-SMA) and CD45 (leucocyte common antigen) by immunohistochemistry. The redox state of the liver was assessed by hepatic glutathione (GSH)/oxidised glutathione (GSSG) and S-nitrosothiol levels. Subtypes of opioid receptors in cultured hepatic stellate cells (HSCs) were characterised by reverse transcriptase-polymerase chain reaction, and the effects of selective delta opioid receptor agonists on cellular proliferation, tissue inhibitor of metalloproteinase 1 (TIMP-1), and procollagen I expression in HSCs determined.

RESULTS: Naltrexone markedly attenuated the development of hepatic fibrosis as well as MMP-2 activity (p<0.01), and decreased the number of activated HSCs in BDL rats (p<0.05). The development of biliary cirrhosis altered the redox state with a decreased hepatic GSH/GSSG ratio and increased concentrations of hepatic S-nitrosothiols, which were partially or completely normalised by treatment with naltrexone, respectively. Activated rat HSCs exhibited expression of delta1 receptors, with increased procollagen I expression, and increased TIMP-1 expression in response to delta(1) and delta(2) agonists, respectively.

CONCLUSIONS: This is the first study to demonstrate that administration of an opioid antagonist prevents the development of hepatic fibrosis in cirrhosis. Opioids can influence liver fibrogenesis directly via the effect on HSCs and regulation of the redox sensitive mechanisms in the liver.

PMID: 16543289 [PubMed - indexed for MEDLINE]

Send me a private message with your regular email address and will send you some files as attachments. If you're not interested, no problem.

[mikesimon]

Done.
Mike

[Bali05]

Mike,

I keep my fingers crossed for your labs and Fibroscan.

Just waiting to see it all come back great and than someone

saying FibroScan was not accurate enough.

Got my first LDN refill today so I am on it for the first month.

The IVs are helping a lot but expensive. I will let you know when my labs are due

For now I am fighting these duodendal ulcers that screw up my digestion,

sleep ect...  Not great for immune system. But at least I know what

has been terrorizing my life for the past 6 months.


Bali05

[mhudnall]

My doc had me take pepsin/betaine capsules sandwiched between bites of food at every meal for my ulcers. Those digestive proteolytic enzymes chewed up the H pylori and the ulcers disappeared. I know I told you that before, but I thought I should repeat it because it really worked well for me, even without antibiotics.

Great that you are a month into LDN. Do some labs at three months, and give it some time to work before you do another fibrosure. I wouldn't be surprised to see you improve your score. I'm sure your labs will look great.

Best regards,

Mike H

[mhudnall]

A while ago, mikesimon suggested that I check my fibrosis levels with some of the non-invasive fibrosis tests, since I decline to have a biopsy done. The readily available ones are the fibrosure/fibrotest blood tests, and, to a much lesser degree of availability, a fibroscan. I agreed. HR also owns a fibroscan machine in his clinic. Bajawoman kindly contacted him on my behalf, and he said that he would contact me by email to set up an appointment. However, it's been two weeks and I haven't heard from him. So I did a fibrosure test. It is an algorithm of six blood tests:

Alpha-2 Macroglobulins
Haptoglobin
Apolipoprotein A-1
Bilirubin Total
GGT
ALT

I got the results yesterday. The fibrosure results say F3.

That is higher than I thought it would be, but considering I had an F3 score by biopsy four and a half years ago, the results are no too alarming. A lot of very bad stuff happened since then.

The problem with this test is that it may not be too accurate. It has a positive predictive value of 61%. Positive predictive value factors in true positives (verified by biopsy) and false positives to determine the possibility that the person has significant fibrosis. The negative predictive value, which factors in false positives and false negatives is higher, at 85%. In other words, it is better at predicting the absence of significant fibrosis (85%) than the presence of significant fibrosis (61%).

The other thing that raises my suspicions is that my scores are very good except two area, ALT and alpha-2 macroglobulins. If all my scores were moderately poor across the board, I would be more alarmed. But four are excellent and two are markedly bad. And one of those is ALT, which I know moves a lot in my history, depending on how active I am with my program.

I knew that my ALTs have been creeping up, but that is a fairly recent development. I believe I know how to lower those. In fact by improving my diet and juicing greens for nine days before this sample, my ALT went from 154 to 118. I am adding alpha lipoic acid IVs, which I haven't done for many months, to get it even lower. If I had gone into this test with a 154 ALT it probably would have given a higher reading. Does that mean my fibrosis score has moved? I don't think so. Neither will it have moved when I get my ALT down much lower. I'm just not really sold on the accuracy of this test.

The real value of the test for me, however, is that my alpha-2 macroglobulins are very high. 410 with a ref range of 110-276. Well, who would have thought? That's something that you don't really test for regularly. I always looked at VL, AST/ALT and fibrosis scores, however rare. But these fibrosure tests have shown me that there are other relevant markers to monitor.

So what the hell are alpha-2 macroglobulins? Well, it turns out they are very large proteins that contain a region that "baits" your body's natural proteinases (enzymes that cleave proteins in specific regions). So they "trap" your proteinase enzymes.

Wickipedia: Alpha-2-macroglobulin is able to inactivate an enormous variety of proteinases (including serine-, cysteine-, aspartic- and metalloproteinases). It has in its structure a 35 aminoacid "bait" region. Proteinases binding and cleaving the bait region become bound to α2M. The proteinase-α2M complex is recognised by macrophage receptors and cleared from the system. It functions as an inhibitor of coagulation by inhibiting thrombin.[2] It functions as an inhibitor of fibrinolysis by inhibiting plasmin and kallikrein.

In other words, they take out your macrophages, inhibit blood clotting, and inhibit fibrinolytic activity!

Not good!

So, I am not so worried about the fibrosis score of the fibrosure test - I think the more supplemental strategies you employ, the farther you are away from the norm of the study group they used to analyze effectiveness of the test.

But the macroglobulin thing is coming out of left field. So I am going to my doctor for five days next week ( I was going anyway), and we'll see if we can move that number. Luckily that is not a real expensive test anyway - the whole fibrosure test was $320, so one component should be cheaper (but you never know). It will be interesting to start monitoring that for movement.

This late spring and summer I pretty much lived an average lifestyle - lots of protein, including family barbeques, meat, no juice and no IVs. Just LDN and supplements. That's why I think my AST/ALT scores have steadily creeped up. So I'll work to get them down. Luckily those are inexpensive tests to monitor. I will also see how jumping hard back into my program moves the macroglobulins.

The lesson I have learned from this is that for me, living with the disease, its going to take a lot of effort for the rest of my life. Okay diet is not acceptable. Coasting is not going to cut it. Its going to take extraordinary discipline to stay in front of this thing. But I was in a very bad place just two to four years ago after failed treatment - immunosuppressed, very high viral loads, high inflammation, very poor health and pretty much in a free fall, so after climbing back over the edge of that cliff, now there's just a mountain to climb.

Time to go!

Mike H

Mike H

[mhudnall]

Typo Mistake:

negative predictive values factor in true negatives and false negatives.

Mike H

[Willy50]

Thanks for posting the info.  I'm glad you got the test and I think it could be useful to maintain the practice maybe once per year.  Keep in mind that many of these tests are to be done fasting beforehand.  A big greasy sugar laden breakfast beforehand.will skew your scores.  I was silly enough to do one following a 5K race; same deal.  The enzymes can rise following the destruction of cells, such as heart attack or extreme exercise can cause.

I think that since you are not getting a biopsy an additional test....a fibroscan... might be a great addition to your assessment.  HR is also likely to also shed some light on the meanings of your fibroscan scores.

HR is also a person who would be a very trusted source of information on a variety of alternatives.  IMHO many doctors simply are not "up" on supplements, vitamins, and other complimentary /alternative treatment options.  I presume that he may be able to also look at your treatment and give some feedback.

RE: what does the fibrosure score mean?  Once you have a fibroscan I think you'll have a better more rounded picture of what it means.  Keep in mind that if you did not fast your results could have actually been better.  Part of my message is that ALT/AST can rise and fall daily.  The actual effects on the liver, the fibrosis and cirrhosis or fatty liver tend to remain far more constant on a day to day basis.  As imperfect as a fibroscan may be it should still provide that more static appraisal of your liver.  I believe that part of the issue with fibroscans could be operator skill.  I believe that HR is way beyond tech skill level and might also produce a more accurate reading than a basic tech might produce.  I'd like to hear feedback on that; how much the operator themselves can affect the ultimate scoring.

Thanks for the feedback.  I have mentioned before......without a past baseline test or linking the results to a biopsy one does not know if the fibroscan test score means you are getting worse or whether you have improved.  Some form of continuity of testing may in time provide that.  

I think that HR is very interested in the subject of reducing fibrosis.  I assume that means that he is also keen on the methods of testing for and substances/treatments which may reduce fibrosis.  I'm sure that if you get a scan from him you could also get a lot other info in the bargain.

best,
Willy

[mhudnall]

Yeah, I hope that HR does contact me. The combination of Fibrotest plus Fibroscan increases positive predictive value up to 95% if I remember correctly. 61% for the fibrosure is just is a little too ambiguous for me to place a lot of faith in.

But, as I said, that is for fibrosis staging. Alpha-2 macroglobulins are something I will be testing for regularly now that I know they are high. So that part of the test is valuable - another relevant LFT test. The fact that those readings are out of whack is good info; also good motivation. I will be watching that number regularly now, and be trying to move it with my strategies. Fibrosure test - not so much.

I should have more labs after next week. If I get any movement, I will report back.

I am now at war with alpha-2 macroglobulins.

Mike H

[copyman]

as you already know the fibrosure is not that accurate for the middle stages. You could be stage 2 or maybe 4 with your results. Same with the Fibroscan, it is not that accurate for the middle stages so with the same result then you still will not really know. Falling into the middle stages is really tricky when trying to get a firm diagnostic on the stage. In this case a biopsy might be the only way to get the best idea of stage.

Does this mean the LDN & your other supplements did not work to your expections? Are you reconsidering what you have posted here on the benefits of LDN?

Best of luck

[mhudnall]

Well, the fact that the fibrosure test is not very accurate is well known. Here is what the disclaimer reads on the actual report:

"The positive predictive value of a Fibrotest score...(F2, 3, 4) was 61% in that same patient cohort." The cohort describes the study group. So, basically they are saying that for any stage over F1 it is predictive of fibrosis staging to a 61% accuracy.

So what I take from the test is that fibrosis stage is unclear, but it does indicate a clear-cut problem with Alpha-2 macroglobulins. I am glad for that information because that gives me another very relevant marker with which to measure my progress.

As for LDN, and my program as a whole, it does work to my expectations. Three years ago, my viral load was over seven million and it was very high, possible over that, for two years. Now, thanks to LDN and my program as a whole, it is currently at 300 thousand. I'm very pleased about that.

The other aspect about LDN is that it seems to help with my autoimmune conditions. The reason I had to quit treatment, and that I now cannot retreat is extreme dermatological reactions that seem to me to have an autoimmune/allergic component. I also suspect that my hypothyroidism might have an autoimmune origin. LDN helps keep those symptoms in check. When I went on a trip about a month ago, I forgot to bring my LDN. Two days without it and the knuckle on my right pointer finger swelled up, callused and slit. That was an INF tx side effect. LDN brought it under control immediately. Those conditions almost certainly were caused by INF tx, and it is an exacerbating problem that I have to deal with as I address my hep c problems.

What I also see is that I am pretty reactive to bad diet. When I am fastidious I have no symptoms. But as my diet declined over the last year, my AST/ALT crept up and my rashes increased. Now I have a rash on my left elbow and my right knee.

Maybe a food allergy triggers the autoimmune stuff. Gluten, dairy, wheat? I don't know, but when I cut those things out, my problems seem to go away. Just LDN and oral supplements do not, however. That is now clear as well.

I sort of let my diet drift, not on purpose, but with an intent to watch it closely and see the results. I wanted to see if just LDN and oral supplements would let me coast. The lessons I have learned is that is probably not going to happen with just LDN and oral supplements. So, rather than give up on supplements and LDN, I see the opposite. I think it's time to go for another push, increase my efforts, clean up my diet and see what happens.

I will know pretty quickly. I'm juicing greens daily, cutting out bad food, will be starting IVs again, and will re-test again in a month or so. So, I consider this a baseline, and I will measure the effectiveness of my efforts soon.

I'll let you know the results in another month.

Mike H

[mhudnall]

By the way, I hope there is not an autoimmune component to this liver inflammation. That would not be good at all, and certainly not unheard of - autoimmune hepatitis on top of hep c?

I do not like that thought.

Mike H

[Bali05]

To Mike and everybody else,

Please correct me if I am wrong but I am trying to understand this.

From what I know the process of fibrosis does not occur uniformly.

If you have fibrosis than you will have it at different stages in different

areas of the liver. You could be F2 in on spot and F4 in another.

I think it is wrong to try to give the entire organ one grade just based

on one area. The most accurate information overall will be from many

readings covering the whole liver and averaging out an overall grade.

FibroScan is the closest test to achieve this that I know of. My Fibroscan results

consisted of 10 readings. Some F1 , some F2 , some closer F3.

Overall came to F2 the same as my FibroSure test.

I see absolutely no advantage in doing a biopsy , as a matter of fact

the Professor of the Liver Center that currently treats 5000 hepc patients

and does FibroScan to garade liver damage advised me against it.

Am I missing something here ?

[tashka]

I absolutely agree with you. Fibrosis is not uniform, so assessing different areas of the liver and averaging them out is the best way to go. It is great you were able to do Fibroscan.

[mhudnall]

Yes,

I agree with that. I hope that HR will email me to schedule a Fibroscan appointment. If not, I am going on a family vacation to Europe next summer and I will get one where you got one Bali.

Meanwhile, however, the alpha-2 macroblobulin assay is a valuable marker for me. At least it is something measurable that I can monitor for progress, other than AST/ALT. Since I have not been very active with my program for a while, the macroglobulin  assay from the fibrosure test will be a baseline measurement for my efforts as I step them up.

So I appreciate the suggestion to do one, and I am glad I did. I just think the fibrosis staging part of it is not too valuable. Since the other markers are all pretty good, I will just monitor AST/ALT and macroglobulins, in addition to my other labs. All info is good, even out of range labs.

The macroglobulins seem pretty important to get lower, when you look at their activities in the body. They trap your endogenous proteinases, so I am loading up on a supplement that contains serratia peptidase, bromelain, papain and catalase, hoping that those proteases will fill the binding sites of the macroglobulins so they will leave my endogenous proteinases alone.

I haven't discussed that strategy with my doc, but he gave me the supplements and I am just upping the dose. I will see him next week, so I am sure the macroglobulins will be a topic of some long discussions.

I'll let you know what I find out. Also I will probably do new labs in a month; I'll post them.

Mike H

[copyman]

Have to disagree with you that the Fibroscan is the best way to assess fibrosis. It basically is only good to identify cirrhosis. Not good at all for staging fibrosis. I do agree that fibrosis is not the same throughout the liver. The best test would be a biopsy with core samples taken from different parts of the liver.

I have said this before that perhaps this is why Fibroscan has not been approved by the FDA in the USA.

Please see the following PubMed article for full study data : http://www.ncbi.nlm.nih.gov/pubmed/17850410


CONCLUSIONS: FibroTest and FibroScan have excellent utility for the identification of HCV-related cirrhosis, but lesser accuracy for earlier stages. Refinements are necessary before these tests can replace liver biopsy.

[Willy50]

MikeH may be closer to a stage 4 and therefore the fibroscan may be quite useful for monitoring, but less so if he was a stage 2-3.

I believe that somewhere in this forum I suggested that I didn't think that it was going to get approved and then amended the post since (I believe) one of my later posts provided a link where (Shiffman?) said that he thought it was going to be approved by the FDA.  I guess, still a good diagnostic tool, but not across the board.  Useful perhaps to Mike H due to his staging.....  
But.....I know you know most of this.....  Without regard..... who wouldn't want to get a fibroscan and consult w/ HR?  Seems like money well spent.  I'd love to hear him weigh in on this.....

~~~ Willy
------------------------------------------------------------------------------

http://www.easl.ch/press4.asp

These results were also presented by Dr. De Ledinghen in Vienna. The study of 268 patients showed that FibroScan® provides just as accurate a diagnosis in the case of alcoholic liver cirrhosis as with HCV patients. Furthermore, in comparison with various biological markers, FibroScan® proved itself to be the best non-invasive method for the diagnosis of liver cirrhosis.
--------------

Echosens: Canada Approves FibroScan(R) and its 3 Probes
Wed Sep 9, 2009 10:45am EDT

http://www.reuters.com/article/pressRelease/idUS163702+09-Sep-2009+MW20090909
---------------------------------------------------
http://www.aetna.com/cpb/medical/data/600_699/0690.html

"For cirrhosis, the summary AUCs for FibroTest and FibroScan were 0.90 (95 % CI not calculable) and 0.95 (0.87 to 0.99), respectively.  The authors concluded that FibroTest and FibroScan have excellent utility for the identification of HCV-related cirrhosis, but lesser accuracy for earlier stages.  They noted that refinements are necessary before these tests can replace liver biopsy."

[tashka]

I agree that the biopsy with the samples taken from different areas of the liver should provide more accurate results. But big downside of biopsy is its invasiveness. This procedure has considerable risks. More samples taken-more risk. Fibroscan is non-invasive. I would chose Fibroscan over biopsy any time for the following reason. At stage 3-4 it would provide an accurate result-and that is when you start thinking about taking aggressive action. When the patient is at stage 0-2, there is no such urgency, and it does not really matter if you are at stage 0 or stage 2-you still have the disease, but no advanced fibrosis.
I really don't understand why here in US we can not have an alternative to biopsy. Fibroscan is used all around Europe with great success. People are diagnosed and treated appropriately. Bali just went to Germany and was correctly diagnosed as stage 2, confirmed by his labs and other tests. Fibroscan can be repeated every year or even twice a year, which is very informative. For select patients with doubtful results biopsy can be advised. And most important, Fibroscan can do no harm.

[Bali05]

I went for consultation Hep C Research Center with Dr. Ira Jacobson. He is a big name
and well known under the "Top" Hep C treaters in this country. He is leading the new phase
2 trial with Alinia + SOC for geno 1 , which is why I went to see him (I am geno 4).

When asked about biopsy and the fact that fibrosis does not happen uniformly ,
he simply denied it , said it was not the case and came with the "golden standard" explanation.
The fact is that people like him are treating this disease from a mainly academic perspective. They always want to do biopsy , no matter what. It fits the protocoll
of the statistics and that is what they do. There is a plus side to this since we learn
from their trials however I have a problem being treated as a number especially
when health risk is involved.
I lost about 99% of my trust at that moment.

Univ.-Prof. Dr. med. Dieter Häussinger (renowned Liver Specialist in Germany) leads a Liver Center of 5000 Hep C patients , did FibroScan and advised me against biopsy.

http://www.uniklinik-duesseldorf.de/englisch/
departments/departmentofgastroenterologyhepatologyandinfectiology/page.html

[Bali05]

How many times would you say does one need to be stabbed in the liver
to get a good overall biopsy result ? It is a pretty big organ , so you really think
3 times is enough ? Maybe it should be 5 times ?

Bali05

[FlGuy]

May be Dr. Jacobson is correct. He didn't just fall off the turnip truck.

And there is no faster way to become and be teated like a number than to be in a clinical trial. It's the nature of a trial.

[Bali05]

Another maybe.
I know , I admit this is a personal problem of mine and Dr Jacobson of course is highly regarded in his field .But I am not sold on the biopsy issue.
Univ.-Prof. Dr. med. Dieter Häussinger strongly advised me against it , I should not
let anybody do this to me , since we have FibroScan.

[FlGuy]

I would guess that Dieter Häussinger ordered a whole lot of biopsies before Fibroscan became available to him

[Bali05]

I would guess that to.
He is  using FibroScan for 5 years now and they have a lot of experience with it.

[nygirl7]

May be Dr. Jacobson is correct. He didn't just fall off the turnip truck."

Anyone who would believe someone on the internet over Dr. Jacobson needs to really seriously do some hard thinking.  Especially if they are not treating with him and he offers his advice on a consultation.  He has been the premiere investigator of this disease for many many years and has coorborated more FACTUAL data that just about anybody on the universe.

As biopsy IS currently the gold standard as it does take several samples from different parts of the liver I cannot imagine why he would lie - it serves him no purpose to do so or give false information.

If you are afraid of a biopsy and consider it too invasive just say that but to imply it's not the best tool there is for diagnosing liver disease well..that is simply incorrect.

[bajawoman]

Hi there
Mike can you please send me your website again I would like to forward it to HR     And as far as this discussion goes  Fibroscan is a great tool but  Biopsy is also it is all in who is performing the deed and interpreting    Biopsy's are much easier to read I would assume than a Fibroscan    a machine cannot do anything the person operating it does the job so it all comes down to human excellence or error   HR is a good Fibrocan man but would never negate getting a biopsy  

so Mike send me that website of yours ok can't find in the PM's  you sent I think it is on Yahoo??? help so I can forward the link  thanks mucho

[tashka]

An average biopsy takes just one sample and it can come up with completely wrong result-again because the liver is a very large organ. I don't think that Dr Jacobson lies. He sincerely believes in what he is saying. What he states is the current protocol.
But judging from my personal experience, biopsy is, probably a useful tool, but in no way can  be called a gold standard. The rate of mistakes is about 30%. I got this information not from general internet, but from published research studies. I wish, I looked at these studies before my husband underwent this test. He experienced one of these unfortunate mistakes: was diagmosed as stage 1 by the biopsy, but in reality had cirrhosis that was missed. I think, that every patient, especially newly diagnosed, should be informed that biopsy can make a mistake and it is far from 100% accurate (this is the impression you get when you hear the words "gold standard").
It is very natural to be scared of the biopsy and many people are. Vernon agreed to it, but I know that if I would be sick, I, probably would never have agreed. I am scared to death of all procedures and of sedation. That is why I said that many people would prefer Fibroscan-for the same reason that any patient would prefer taking medication to surgery.

[mhudnall]

I think there are two issues that have to be weighed against each other: accuracy vs invasiveness. Tissue damage (and scarring) rise with invasiveness.

Both accuracy and invasiveness also rise with each other. The most accurate method would be to take the liver out and examine it. That is also a 10 out of 10 on the invasive scale.

Multiple samples from multiple sites are more accurate than one sample, also more invasive; more damage.

Most doctors only do biopsies to evaluate for treatment. I don't know that a lot do biopsies for information if the biopsy is not germaine to the discussion of whether to treat or not. I know that many will not do a biopsy unless it for that reason.

Biopsies are generally not done more than 3-5 years apart. That is also part of the issue of tissue damage. That's why using non-invasive methods is desirable; it would be nice if they were more accurate.

As willy pointed out, the accuracy of the fibrotest by itself is 61%, but when coupled with a fibroscan they are 95%. I would be comfortable with that.

An algorithm is not too convincing to me.

Mike H

[HCA]

Since 2000 I have had three needle biopsies.one trans-jugular biopsy and three fibroscan examinations.
The biopsies were all consistent save for one.i.e
Stage 2
Stage 1
Stage 3
Stage 3/4.

I called the pathologist who read the third one-he went back and looked at the slides of the second and said was an undercall.
I am quite disappointed with the fibroscan which recently with an expert operator on a freshly calibrated machine gave a result of 8.5 kps which underestimates the degree of fibrosis.
By no means is this device ;gold standard.
Why people who never even seen a liver would presume to know better than practicioners like Dr Jacobson astounds me
I am also not a fan of Hepatitis Researcher suggestions which are ,,apart from the fibroscan the promotion of numerous unproven supplements.They probably do no harm,but if they were really anti-fibrotic the proof would not be so elusive.
You have in the USA some of the best viral hepatitis specialists in the world-people like Dr Shiffman who keep both feet firmly planted in medical science.
If you view online, presentations or read papers from people like this you will appreciate how much more they know than do- patients,even well read ones

[mhudnall]

Bajawoman,

I just sent my email address to you by private message again.

Thanks so much for the help!

Mike H

[nygirl7]

Why people who never even seen a liver would presume to know better than practicioners like Dr Jacobson astounds me "

Sounds to me like going to a gynecologist and asking them to read a brain scan if you ask me.

And I'm sorry mudhall but the excuse that your liver is deteriorating not because of the lack of treatment and the supplements but because of your diet is just ludicrous.  As everyone in here knows I eat cheeseburgers and fries more than the average bear and my enzymes post treatment are consistently 10 - 20 area.  it doesn't take a gynecologist to make the connections there.

Not believing in staging fibrosis is another cause for error that makes no sense since every single hep doctor in the world seems to go by that to draw that line and who needs to treat and who does not.  

It's just not making sense at all.  



  

[Bali05]

As I said before Dr. Jacobson is one of the TOP Hep C treaters in the country.

Nobody is implying that he lies.Why are you trying to misinterpret my experience?

I am coming to this forum to share what I encounter during this journey.

In this case two contradicting opinions from two well known doctors in two different
countries.

By the way Dr. Jacobson only excepts biopsies if slides are read by his pathologists

guess there is always room for interpretation .

[FlGuy]

Just to clarify, Fibroscan is not yet approved for use in the U.S.  I think I read that it was recently approved in Canada though.

[bajawoman]

Hi  Mike  I have your email and sent it to HR  but needed your Website?  I swear you told me you had a website  do you ??  just wanted to send all your information about the LDN you recommend  He may be interested too   baja

[Bali05]

Just watch a slide show I got via email
Clinical Care Options
CCO ANNUAL UPDATE
Hepatitis Annual Update 2009

It said exactly what Mike says. Combination FibroScan + FibroSure give
90% accuracy and will very well be the way of the future.
It also talks about sampling error of biopsies.

I got my FibroSure from LabCorp than went to Germany for FibroScan.

Not sure about Canada.

Only know that it is next to impossible to get this absolutely harmless noninvasive
and so helpful additional diagnostic tool in the US.

It does not make sense.

I asked the hospital in Germany how this is possible . The doctor shrug his shoulders
and said maybe because it is an european product and not US.

[mhudnall]

Hi Bajawoman,

No I don't have a website, but the LDN website is:

www.ldninfo.org

However, that site does not have the studies that pertain to LDN and hep c. I have those and can send them but I need a regular email address so I can send them as an attachment. That is the information that he would want to see regarding LDN and Hepatitis C. I can send them to you if you want to forward them along, but you would have to give me your regular email address (if you have one), so I could send them to you first. Then you could forward the whole email with attachments to him.

You can private message me if you have a regular email address.

Thanks a lot, I really appreciate it.

Mike h

[evangelin]

HR was by no means against Tx, he just knew it would leave half of us out in the cold.  His unproven supplements made a huge improvement in Joe, who was given no hope beyond a transplant.  I'm repeating myself to say Joe was not well enough to consider retreating until after about 8 months of HR's supplements.  His Dr. looked at his improved labs and said to go for it so we tried a third time.  I wish we hadn't since it was 15 more months of misery to no avail. We had our shot though.
I will love HR forever.  The lab improvements aside...Joe felt better than he had for a long time and that isn't suppose to happen after years of cirrhosis.  Feeling better counts for a lot in my way of thinking.
HR is a genius and he had reasons for the supplements he suggested.  He also made it clear they were all considered non-harmful.
I'm going with the genius,
Ev

[mhudnall]

I think the term "unproven" is in the eye of the beholder. It depends on what you demand for proof. Some people will never be satisfied with evidence from research. In fact, the term "unproven" is usually used by people that refuse to look at the evidence.

Someone here just claimed that my liver is deteriorating with no proof. If my biopsy from 4 1/2 years ago was accurate and the fibrosure is accurate, then it is not deteriorating. It is holding steady. I have no opinion about the accuracy of the fibrosure, but it is not saying the opposite.

How do you prove anything, especially to someone whose mind is made up? Some people say evolution is unproven. Science says it has been.

Mike H

[Upbeat]

I have 6 weeks left before my appointment with Dr Berkson. I will ask him what he thinks about the Biopsy and fibrosure and fibroscan options.  Actually what difference does it make.  Some people say treat with any stage others say wait till stage three.  What ever your liver condition is its what it is.  

[copyman]

Bali05 asked,
"How many times would you say does one need to be stabbed in the liver
to get a good overall biopsy result"

I would say getting "stabbed" 3 times would be enough.

Bottom line:
If you want to know ONLY if you have cirrhosis get a fibroSCAN or fibroSURE.

If you want to know what stage fibrosis you are get a biopsy.

Plain & simple.

PS,
A doctor like Ira Jacobson could tell you what stage you are just by looking at your blood tests & physical exam. Top hepatologist like him have seen enough patients that they know very close to what stage you are even before a biopsy.

[tashka]

Well, that is just wondeful. I wish, there were more doctors like that. Deep in my heart I also believe that the stage of fibrosis can be diagnosed pretty accurately without invasive procedures. Labs, symptoms, and several non-invasive tests can provide sufficient information, especially if the dictinction is made between mild and advanced levels of liver damage.

[mhudnall]

Nygirl7 said,

"Not believing in staging fibrosis is another cause for error that makes no sense since every single hep doctor in the world seems to go by that to draw that line and who needs to treat and who does not."

I think that is a very good point, and kind of the crux of the matter. Every doctor that does a biopsy is looking for information to evaluate "treatment options". Treatment options mean, do we treat, or do we not treat. Take the option to treat off the table, as in my case, and no one would order a biopsy. What would they do with the information?  The information is useless to them. What would they change if it was stage 1,2,3 or 4? Treatment is the only bullet in their gun, so without it they are powerless to do anything else. Even noted hepatologists. I seriously don't think any doctor would order a biopsy for for me even if I wanted one. There is a cost, but no benefit.

Mike H

[Bali05]

Unfortunately I did not get this from Dr. Ira Jacobson.
I had all my labs everything you can possibly have including FiberSure, Ultrasound.
He did a physical as well and basically offered SOC with prior biopsy.
Wanted to do new labs right away even though the ones I had with me
were only 1 to 2 months old. Wanted to do a different VL test , because
it could possibly (not for sure) show a slightly higher VL.
No thanks !
I rather stay with my first test and compare apples to apples for now.
He told me Mt. Sinai hospital had a FibroScan that somebody donated.
So they gave a note written on his notepad prescribing FibroScan.
When I called Mt. Sinai nobody in that hospital ever heard of FibroScan.
Called Radiology Dept. , Nuclear Dept ect..... nobody knew what I was
talking about. I figured if nobody knows about it what are the chances they
no how to operate it ?
I decided to go to Germany instead.

[nygirl7]

Wanted to do new labs right away even though the ones I had with me
were only 1 to 2 months old."

Dr. Jacobson does labs EVERY month as standard practice and this includes PCR. They are very thorough and watch everything closely. One of the things I adored about him. For the record he is the one who got me my extension when it too "experimental" to other doctors to do so.  He was one of the only men with enough juice to get my regular doctor to agree. My doctor was EXTREMELY impressed with him not only be reputation but when Dr. J got himself on the telephone to my doctor during my exam and spoke to him.  

Can't be that in a doctor, who is that caring and compassionate and still be one if not the top doctor in the world.

[Bali05]

That sounds great.
Thanks for sharing this. I might have to go back to him.
He is running the Alinia + SOC trial for geno 1.
It will be very interesting to see if they get similar results
as they did in Egypt for geno 4.

[nygirl7]

Honestly, I cannot think of a man I would trust my life more with when it comes to hep.  Without him chances are I would not be cured today but he was SO far ahead of the rest of the doctors.......there was no comparison.  Because he is the lead investigator in most/many of the trial studies that are done and written into the journals he's got a great advantage.

Hes marvelous.

[Bali05]

this why I went to see him
can`t get enough positive information

thanks again

[Bali05]

Forgot to ask you
What role did Dr. Jacobson play in handling your Sx ?
Is that something you have to deal with on your own with your GP
or does Dr. Jacobson prescribe the so called rescue meds ?
I had asked him about starting some kind of antidepressant before
Tx because I hread about it on this forum but he strictly said he
would not do that.
After 72 weeks do you have any permanent damage caused by the
Tx drugs ?