Dr Berkson Keynote at the National Institute of Health

http://nolahepper.blogspot.com/2009/11/dr-berksons-2009-videos-pancreatic.html

[desrt]

Thank you for posting this. I was almost tempted to visit this guy just to be fair about my judgement of him. You just saved me some gas money.

"Alpha lipoic acid..... I think it's absorbed in the stomach."
Burt Berkson

http://www.youtube.com/watch?v=c29DAE4MGmo

I will definitely ask my neurologist his opinion about ALA and neuropathy when I see him next month.

[orphanedhawk]

While doing tx I saw an herbalist who is also an MD.
She highly recommended ALA and my heptologist had no problem with my taking it..

[GSDgirl]

I googled triple antioxident and this is what I found right at the top.  The article is by George D Henderson but is about berkson.  It actually had my attention till this sentance.  Don't get me wrong, I am a believer in vitamins and supplements.


" Berkson treated each patient individually according to their symptoms, but his basic “Triple Antioxidants” regime is still the gold standard of treatment for preventing and alleviating the symptoms of hepatitis C and protecting the liver, just as combination therapy, for all its faults, is still the gold standard of treatment for killing the hepatitis C virus."

here is the link  http://www.chronicfatiguetreatments.com/wordpress/treatments/article-by-george-d-henderson-why-triple-antioxidants-relieve-the-symptoms-of-chronic-hepatitis-c/

Denise

[Trish77]

It could be the same article that I'm quoting up top as that sentence is also in the article in my initial post.  I don't know enough about this to dispute the claim that the "Triple Anti-oxidants" is the gold standard of preventing/alleviating symptoms of Hep C and protecting the liver. I posted it primarily to generate discussion that could be learned from one way or another.  

I'd be interested to know where your concerns lie.

Trish

[GSDgirl]

It was this part.  I don't know enough BUT I haven't seen or heard of any proof that anything other than SOC will kill or get rid of the virus.

"gold standard of treatment for killing the hepatitis C virus."

When I googled tripple antioxidants all that came up had to do with hep c (well OK I didn't go thru tons of pages)

Denise

[Trish77]

Wrong thread .. was thinking I was in my thread.  Anyway....

You're misquoting.

Your previous quote says:
"gold standard of treatment for preventing and alleviating the symptoms of hepatitis C and protecting the liver" in reference to triple anti-oxidant therapy which is accurate

Now you're suggesting he's claiming that triple anti-oxidant therapy is:

"gold standard of treatment for killing the hepatitis C virus."

and that's not the case at all.  

Where he mentions the gold standard of killing the virus is in reference to combination therapy - interferon and ribavirin:

"just as combination therapy, for all its faults, is still the gold standard of treatment for killing the hepatitis C virus."

This is the same article, same guy that is in the thread I started on triple-antioxidant therapy.

[GSDgirl]

you are right, I should know better that to try to concentrate while watching Steeler Football.  my bad

[Trish77]

Funny. :)  Good luck to your Steelers.

[GSDgirl]

pfttt They needed more than luck today

[Trish77]

Can I ask you what you take the ALA for and what benefit you notice from it?

[nolachris]

Hi,

I'm nolachris - aka - Nola Hepper - thank you for posting my blog!  I just ran across this forum and found info about Dr. Berkson and LDN - then went to it and found that it had been removed?  Why?  

I've been on LDN since February of this year - am still on 3 mg. which I take every night or every other night - and my viral load has continued to drop.  I feel great!

I am also a member and moderator of a support group for folks with all forms of Hepatitis - it includes adults and children.  Joyce started the group after the successful treatment of her daughter's Hep B with LDN.  And our membership is growing as well as our database.  We encourage members to post their "pre-LDN" labs and their "after LDN" labs so that Joyce can sent them to doctors and researchers around the country.  She has interested a prominent doctor at Hershey Medical in doing a possible Hep C Clinical trial one day.  That same doctor is currently involved with a trial using LDN for Crohn's.

As far as Dr. Berkson goes, he is a very good integrative doctor - my own doctor gave me his famous "Berkson Clinical Study" a couple of years ago and I added his "triple antioxidants" to the ones that I already was taking.  And I knew a couple of people who had gone out to see him - so I decided to go.  Dr. Berkson prescribed the LDN for me and within 3 months, my viral load had dropped from over a million to 49,000 and my lft's were normal - In January my ALT was 174 to 23 in May and AST from 105 to 30.  In October, my viral load was 18,000!   I could never have achieved those results just through supplements and diet.  Several folks who also saw him and are members of our forum - 2 who were in end stage and on the transplant list.  Many have cirrhosis or autoimmune hepatitis.  All are benefitting from LDN. Most folks on the forum either tried combo treatment and failed. or had to quit due to the side effects or simply did not want to do such an extreme treatment.  I am one of those -

I encourage everyone to research LDN - there are a number of support groups for folks using LDN for many, many disorders, from all over the world.  My own doctor now prescribes LDN for me as well as for some of her other patients.  

LDN is FDA approved at higher doses for addicts.  Along the way, doctors like Zihari and Zagon found that in very low doses, their patients with viral diseases, like HIV, hepatitis, etc. got better.  And at these low doses, it is very safe for the liver - there are tons of articles about it on PUBMED - where both Joyce and I get our information that we share with the members of our group.

Anyway, sorry to be so longwinded - but LDN is for real and soon, many more folks will be telling their own stories about using it.  Bummer about Dr. Berkson's thread getting removed - wonder what the folks at the National Institute of Health thought about him being the keynote speaker there in October? Or about his name being banned from a health forum?

Thanks again for posting my blog - hope that it and my post don't disappear as well....

Nola Chris

[Andiamo1]

It is my belief that he was not the keynote speaker at the NIH, although he did give a speech at a library on their grounds and that speech was paid for by an entirely different organization.  You are saying that he did give a keynote speech to the NIH and imply they would be upset by his thread being removed.  

What proof do you have that he gave a speech to the NIH?

[Trish77]

Same question as Andiamo - note the information below.  Is this the speech you're referring to?  If it is, this is not a keynote speech TO the NIH.  This is a keynote speech for a fundraiser in one of the buildings on the grounds of the NIH and privately organized - "being organized entirely by Mrs. O'Malley".  There's a big difference.

http://www.lowdosenaltrexone.org/ldn_latest_news.htm

LDN Conference Planned for October.  A Low Dose Naltrexone Conference arranged by Sunny (Sedlock) O’Malley will be held on October 19th, 2009 in the Lister Hill Auditorium in the National Library of Science on the campus of the National Institutes of Health (NIH). The conference theme, "Project LDN: Funding Clinical Trials," was selected because it reflects the increasing need for LDN to be recognized as a mainstream treatment protocol.

[Ed. Note: The LDN Conference of October 2009 differs from all prior US LDN conferences in that it is being organized entirely by Ms. O'Malley, with no involvement by David Gluck, MD or this website.]

Presenters scheduled to speak include Dr. Burt Berkson, Dr. Skip Lenz, and author Mary Boyle Bradley. The conference is made possible through the support of Platinum Sponsors: Bellevue Pharmacy of St. Louis and Skip’s Pharmacy, Florida. No admission fee is asked.

Ms. O’Malley has chosen to designate this conference as a fund raiser for Dr. Jacquelyn McCandless’ LDN Mali Trial. All conference attendees are requested to go to the Ojai Foundation’s Africa Fund donations web page. A minimum donation of $50.00 per attendee is suggested, but not required. To learn more about the conference and register online, visit Project LDN.

[Trish77]

"Most folks on the forum either tried combo treatment and failed. or had to quit due to the side effects or simply did not want to do such an extreme treatment.  I am one of those -"

That's perfectly fine as long as you do that with your eyes wide open and have thoroughly checked out your options after seeing a good hepatologist who can explain them to you - would you agree?

I happen to think that the components of the triple anti-oxidant approach deserve a closer look because of the purported .. and reported .. results they're getting with Hep C and autoimmune diseases, etc.

Where Berkson's approach gives me trouble is when he tells people there is no cure.  You're on a forum of people now where many HAVE been cured and I'm one of them - no evidence of viral load, my LFT's incredibly normal and now no evidence of liver damage at all and no follow-up of any kind required - in my case.  Cure being no evidence of viral load in the blood six months post treatment.  That is the clinical definition of cure accepted worldwide and used in all clinical studies worldwide.  Then I come across an article by Dr. Berkson that states this:

"The standard-of-care treatments for severe liver damage, especially liver transplant surgery, can be painful, disabling, and extremely costly. From my experience in my practice, interferon and antivirals have less than a 30% improvement rate, and this response is usually not permanent. "

This is patently false and untrue.  If the only people Dr. Berkson sees are those that have relapsed and are looking for alternatives, that might explain that kind of statement but it is grossly incorrect.  And I wish it were that simple.  

Br. Berkson tells people that Hep C cannot be cured.  If those people believe this and don't know there is a treatment they can undergo to be potentially rid of the virus permanently and never ever have to take triple anti-oxidant or IV ALA or LDN or anything ever again, that is a huge problem.  Wouldn't you agree?  

You have considered all your options and decided to live with your Hep C and attempt to outlive your Hep C.  Even if I'd seen Berkson's protocol, I still would have done treatment.  I wanted this done and gone and that's exactly what I got.  Everybody needs to KNOW that this is possible and what the risks are and to make a fully-informed choice.  Not your choice for them, not Dr. Berkson's choice for them, their OWN choice.  Wouldn't you agree?

[Marcia2202]

Wow.... the statement that there is NO cure is so much in contradiction of the statements of the worlds best hepatologists. And also contradict with a lot of studies I have read.

I also believe that some of the numbers mentioned are old.

VL can now be measured way below 600 IU

VL above 400.000 are considered high nowadays.

[Marcia2202]

copyman expressed exactly what I meant

[Willy50]

This link also appeared in Nolaheppers blog.

It is a transcript to an interview of Dr. Berkson;

http://www.honestmedicine.com/2009/03/burt-berkson-md-phd-talks-with-honest-medicine-about-his-work-and-our-medical-system-the-interview-t.html

Pretty interesting reading and it may answer a few questions that have come up lately in this forum.

Best,
Willy

[Andiamo1]

I am amazed that a person educated in the medical field and working at a transplant center would write a letter like this with so many wrong statements.

[franke566]

Yes I agree with you and that is why I gave the Email address and phone #-seems that a real answer is illusive.  Which keeps me in a flux.  My own
Hepatologist now doesn't agree with my old Hepatologist.  I sent the same question to Baylor, U,Va, Mayo and have yet to hear back from them but it's the weekend.  Thanks. FrankE

[franke566]

could you list a few of those worlds best Hepatologists?  I'd like to ask them the same question and I believe the woman said under 600 IU/L is considered UVL whether it be 1 or 599 Is how I took that to read.  Please don't kill the messenger LOL-This is why I gave the phone # and Email address-as for Methodist Hospital I have no idea whether or not this Berkson is affiliated with them or not.  I just asked a straight forward question:  Is their a cure for Hepatitis C?  Have a nice day. FrankE  

[Marcia2202]

Not killing you... :-)  killing the lady who wrote that piece of junk to you.

When I hear crap like that, I feel like screaming and ripping out my hair. It aggravates me sooo much.

One is Dr. D.  check out some of his answers on

http://www.medhelp.org/posts/Hepatitis-C/NEWEST-CURES-FOR-HEP-C/show/564454

http://www.medhelp.org/posts/Hepatitis-C/precatuions/show/651297

http://www.medhelp.org/posts/Hepatitis-C/Testing-Recommendation-after-1-1-2-year-post-Treatment/show/584966

http://www.medhelp.org/posts/Hepatitis-C/12-week-post-treatment-results/show/549844

Dr. D used to answer questions, there is some very interesting stuff there

http://www.medhelp.org/forums/Hepatitis-C/show/272

Sorry about the 'bombardement' of links.


The other hepatologists are the ones named on the studies I've read. I'm sorry I cannot recall their names and the studies, but checkout CCO. There are tons of studies and names there.

[Proactive]

I'm always surprised at how emotional people get everytime this svr,cure,dormant subject comes up, it's like comments are taken as personal attacks. Call it what you will, it is what it is...I'm even more surprised how threads have taken such amazing twists and turns lately, but that's another subject...:*)
Pro

[copyman]

a world leading hepatologist dr afdhal in boston also used the word cure to me face to face when I consulted with him. This is no hearsay this was said directly to me. Once again this is one of those topics that everyone has a different opinion on. My opinion happens to be that someone can be cured of HCV. Of course you will always test Pos for the antibodies but if you have a Neg PCR you can rest assured that your liver is not being damaged by the disease anymore. There have been people 5 & 10 years after TX that still test Neg. That is a cure as far as I'm concerned !

[Proactive]

Thanks copyman, point proven(g)..in the end, after all the back and forth it is really only one thing, undetectable within the limitations of current technology to detect it. you say tomāto, I say tomäto..:^)

[Marcia2202]

What I get emotional about is when health care professionals come out with inaccurate statements which are outdated. Especially when it is presented with so much certainty.

"Even if you are SVR, your hepatitis c antibody will remain positive, but your Hepatitis C RNA will be undetectable.
Positive Hepatitis C antibody (HCV) means you are infected with the Hepatitis C virus
Hepatitis C RNA levels less than 600 IU/ L are considered undetectable viral loads and indicate a dormant virus.
Regarding the actual fact of being cured or not, I chose to believe the more experienced."

Isn't this statement kind of like saying that if you have hep A or B antibodies, you have the disease? I bet you that one day, when they will come up with a hep C vaccine, one would also have hep c antibodies from the vaccine. Would this woman then also claim that one had 'dormant' hep c. Again... she is using the term 'dormant', which to my knowledge does NOT apply to hep c.

My OCD is kicking in... big time

[comeagain]

When my doc send the paper after my post 6month pcr UND(SVR) to the national institute of health in Sweden in order to
get me out of allregisters .
He wroteJan xxxxxxx who have had cronic (chronic) hepatitis c, are not longet to be considered cotagins. Jan xxxxxxxhas still antibodys toward hepatitis C (anti HCV-positiv) which will remain for many years.

Note it says for many years not for ever here are two links about that.

http://www.medhelp.org/posts/Hepatitis-C/Will-HCV-antibody-disappear/show/87599
and

Abstract:
summary. Antibodies to hepatitis C virus (HCV) may decrease or disappear after viral clearance in treated or spontaneously resolved infection. We evaluated the usefulness of serial antibody assays in predicting the antiviral treatment responses. One hundred and four chronic hepatitis C patients who received 24 weeks of interferon and ribavirin combination therapy were assayed with a third generation enzyme immunoassay anti-HCV. The mean titre of anti-HCV decreased by more than 50% (from 89.5 ± 10.8 to 43.6 ± 17.5) at 48 weeks post-treatment in patients with a sustained virological response, while in nonsustained virological responders and nonresponders, the titres remained over 85% of the pretreatment level at 48 weeks post-treatment. There was a divergence of anti-HCV titres between sustained and nonsustained virological responders during 6–9 months. By using the ratio of 9-month to 6-month titres as an index and receiver operator characteristic curve analysis with the cut-off point set at 90%, we could differentiate sustained virological responders from nonsustained virological responders with a sensitivity and specificity of 91.7% and 90.9%, respectively, 3 months after treatment. The titre of this third generation anti-HCV decreased progressively in sustained virological responders and this assay may be used to monitor and predict antiviral treatment responses.

http://www.ingentaconnect.com/content/bsc/jvh/2002/00000009/00000004/art00008

ca

[comeagain]

Here is another MH tread about antibodys if someone is interested!

http://www.medhelp.org/posts/Hepatitis-C/Hep-C-Antibodies/show/96695

rockagain

[tashka]

It is just unbelievable. She is RN, BSN, works in a transplant center-and is so uninformed. How can anybody who studied at this level of nursing, and obviously took microbiology and infectious disease classes state that if you have antibodies you are infected? It is basic stuff. It is taught in undergraduate classes. We have all kinds of antibodies circulating in our bloodstream-but it doesn't mean we are infected. The body encounters infection and clears it, but antibodies will stay forever.

On top of that, she doesn't know much about hepatitis C and the results of its treatment. With medical professionals like that, no wonder so many people become desperate and hopeless about their disease.

[comeagain]

I wonder if the message that frank posted isn´t 10 years old.

[Marcia2202]

Or more like 20 years. :-)  She is stuck in a time warp

[franke566]

Hi comeagain. This is why I posted the womans name and phone number.  I also posted her email address but the forum moderators removed it so I will try again:  feel free to ask her.  I doubt that someone who is the manager of Clinical Operations of the Methodist Transplant Center in Houston, Texas would be cruel enough to post 10 year old information.  Aside from that the very word "Dormant" has a sinister ring to it; to me anyway.  I want to hear "Cured".  Dormant means non-active but present.  Dormant volcanos often rumble back to life.  Seeds can lie dormant for centuries and spring to life.  Small Pox can manifest itself as shingles  I hope you are not implying that I knowingly posted something that is 10 years old. I asked the question on the 5th of December, 2009 and this was her reply.  You have her name, phone number and title and hopefully Email.  If not her Email I am sure you can reach her at the Methodist Transplant Center in Houston, Tx.  Best regards, FrankE

[comeagain]

Franke to honest i didn´t really know what to think or believe!
Talking about them >600iuml tests.
I remember I wrote a thread when i was new here  about 2 years ago"get a grip USA" asking why your country in some states still was using that old not sensitive test.

Not only could it cause people to get mistreated.
But also it could fucck up the statistics for the rest of the world you couldn´t really know if people really was SVR with such tests or had a relapse or viral breakthrough and whatever with those tests.
Maybe  Texas and new Mexico where Berkson( could explain some false  odd statements of him 30% my @ss and never cured) is still using the old protocol

I was thinking maybe that person np or whatever she is are sending out a standard letter and has been doing so for + 10 years or so.

I don´t think anybody needs to call her up she does obivously not know what shes talking about.
Hope some get warned about that place by your comment .
I  should be very careful and ask for second opinions all the time if I was supposed to treat there.

ca



ca

[franke566]

Thanks!  Yes, I plan on asking my Hepatologist face to face tomorrow with her Email in hand whether or not SVR means Cured or some vague Dormant bunch of B.S..  I am end stage but was just the other day boasting that I am cured of Hep C.  Then I read a couple of posts about people not being able to give blood etc. and I was trying to find info on this Berkson fella and ended up at the Methodist Hospital Transplant site and thought I'm just going to send a flurry of questions to different Hospitals.  My questions were can a man in his early sisties, who is cured of Hepatitis C but has mild COPD and had a mild left ventricular infarction be a candidate for transplant.  I got the response regarding cure for Hep C and thought Hmmn-I'll see what the forum has to say because I believe SVR means cured and as far as I know I've never heard otherwise from anyone on the forum.  My PCP- a real dumb as% told me there is no cure but he's about 90.  My Neurologist said theres no cure but he's a real dirt bag and has always treated me like a leper anyway.  My current Hepatologist works for Baylor in the Houston Medical Center and Methodist Hospital is right across the street.
He is a senior fellow and pulls no punches.  If he tells me SVR means cure I will personally walk across the street and tell the lady myself that she is wrong.  Not that
it will do me any good.  I've also sent emails to Mayo and U.VA asking the same thing.  I want a transplant foremost but if I can't get one I at least want to know I am cured-don't know if I'm making sense but it matters to me.  I hate doctors who just hedge and run from direct questions.  It would be great if the news media would come out and say Cure found for Hepatitis C-Period.  Wouldn't it?  Have a great evening.  FrankE

[Marcia2202]

Did you read the links with Dr. D's replies to questions? At every occasion he writes 'Cured'

[nolachris]

Hi,

I did not expect this response - I have apparently stepped into a very lively discussion and inadvertently made it even livelier.  Sorry...

I am sorry if I sounded sarcastic when I mentioned Dr. Berkson at the NIH. I guess that I was a bit upset that the post about him had disappeared.  I meant that what would the other researchers at the NIH think if they knew that someone of Dr. Berkson's status and someone who was a keynote speaker at their facility DURING the Low Dose Naltrexone Conference held there in October being deleted from a hepatitis c forum?.  I did not mean that he spoke to the NIH.  And in regards to his credentials as a physician, and as for his studies which are listed on the NIH site, PUBMED, it just seemed kind of self-explanatory.  But, perhaps I assumed too much..?

Granted, the "Berkson study" was written years ago, (1999) prior to the combo treatment offered today and sometimes combined with the newer protease inhibitors, so perhaps, some of the claims about the effectiveness of treatment are outdated and incorrect.   At the time of his study his statistics about SVR were correct.   Success rates have risen somewhat since the time of its publication.

I have been involved with support groups since 2002, when I was first diagnosed and have been involved with, known folks and read countless stories of folks doing treatment - not too many seem to do well - most have to stop or develop horrible sides.  The ones that do clear the virus, usually are 2a's or b's - I can't recall any folks with 1 a or b clearing it or remaining clear - I am sure that there are but I have not seen them. In 7 years.  Also, you must also realize, that most people do not have access to doctors such as hepatologists and many rely on their own doctors to handle their treatment.  Many are ill prepared to deal with their patient's side effects, other than to prescribe something like Procrit for their low blood counts.  I cannot tell you how many emails that I have read  from people who are asking strangers on a forum what to do as their own doctors do little or nothing to help. And what about the thousands of people who failed treatment or could not handle it - what are they supposed to do - just live with it or try to get back healthy enough for another round?

I've probably had Hep C since 1971 or so but was not diagnosed until 2002. I chose not to do treatment after my 2003 biopsy revealed minor inflammation - Stage and Grade 0-1.  I am genotype 1b, as you know, one of the more different genos to treat.  I also had problems with depression.  At the time, I said that I would wait until something else came along - something that had a better chance at working.  So, I took charge of my own health right then and there - I learned everything that I could.

In 2007, I found a wonderful integrative doctor, who's first round of blood work on me revealed several underlying conditions - tests that none of any of the traditional doctors had run in over 5 years.  One test revealed a mthfr mutation, which can affect my homocysteine level and red blood cell counts, causing them to be low, which they are - and both of those conditions are not very good omens for successfully treating with the current interferons. Going into treatment with a low red blood cell count is never good and it's been shown that elevated homocysteine levels can be the reason of failing treatment. Other autoimmune disorders were revealed as well - more possible problems with treatment.


http://www.ncbi.nlm.nih.gov/pubmed/18662278

  
My own doctors testing and her advice on proper supplementation, including Dr. Berkson's protocol, was the first step that I took to bettering my health. Going to see Dr. Berkson, and being prescribed 3 mg. LDN, was the next.  And when I got my first labs back after being on it for 3 months and saw the remarkable results, I joined several LDN support groups, including the Hepatitis Cam group, where many other members are also using LDN with very good results.


http://******.******.*****.com/group/Hepatitis_Children_and_CAM_Alternatives/

  

Here is a list of groups with LDN information and a list of support groups of folks who are using LDN:
  
http://www.ldndatabase.com/
  
http://www.ldners.org/
  
http://www.ldnresearchtrust.org/    contains Those Who Suffer Much, Know Much - personal ldn stories
  
PUBMED articles about Naltrexone:


Opioid receptor blockade improves mesenteric responsiveness in biliary cirrhosis.
Ebrahimkhani MR, Moezi L, Kiani S, Merat S, Dehpour AR.

Dig Dis Sci. 2008 Nov;53(11):3007-11. Epub 2008 May 9.PMID: 18465246 [PubMed - indexed for MEDLINE]


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

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.

Gut. 2006 Nov;55(11):1606-16. Epub 2006 Mar 16.PMID: 16543289 [PubMed - indexed for MEDLINE

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

Brewer C, Wong VS.

Addict Biol. 2004 Mar;9(1):81-7. Review.PMID: 15203443 [PubMed - indexed for MEDLINE]

Berkson:

1.  The long-term survival of a patient with pancreatic cancer with metastases to the liver after treatment with the intravenous alpha-lipoic acid/low-dose naltrexone protocol.
Berkson BM, Rubin DM, Berkson AJ.
Integr Cancer There. 2006 Mar;5(1):83-9.
PMID: 16484716 [PubMed - indexed for MEDLINE]

2.  A conservative triple antioxidant approach to the treatment of hepatitis C. Combination of alpha lipoic acid (thioctic acid), silymarin, and selenium: three case histories.
Berkson BM.
Med Klin (Munich). 1999 Oct 15;94 Suppl 3:84-9.
PMID: 10554539 [PubMed - indexed for MEDLINE]
  
3.  Thioctic acid in treatment of hepatotoxic mushroom (Phalloides) poisoning.
Berkson BM.
N Engl J Med. 1979 Feb 15;300(7):371. No abstract available.  
PMID: 366411 [PubMed - indexed for MEDLINE]


http://www.drberkson.com/journal.html


There are many more naltrexone abstracts available as well, try Zagon, naltrexone and pages of info will come up.

Sorry for the length of this, most folks do need statistics when it comes to hearing about anything new - I had mistakenly thought that just telling my simple story might interest people who are seeking alternative and safe means to handle their disease.

Thank you,

Nola Chris

[Trish77]

Thanks for your sincere response.  I'm going to have to keep my comments brief so I'll just touch on some things and lightly...

"I meant that what would the other researchers at the NIH think if they knew that someone of Dr. Berkson's status and someone who was a keynote speaker at their facility DURING the Low Dose Naltrexone Conference held there in October being deleted from a hepatitis c forum?.  I did not mean that he spoke to the NIH.  And in regards to his credentials as a physician, and as for his studies which are listed on the NIH site, PUBMED, it just seemed kind of self-explanatory.  But, perhaps I assumed too much..? "

I would say the reason we had such controversy over Berkson in the first place IS due to his credentials.  Some things were credible and other things were puzzling.  We're used to reading studies that contain hundreds of people.  Dr. Berkson's study contained 3 people and was in 1999 and nothing published since.  I personally found that puzzling, since it would be easy for him to publish further information on his results treating patients with Hep C considering how many he seems to be treating.  The number of papers he's published on PubMed seem to be scarce, 7 in total and I think 2 of them related to Hep C. So some big question marks there, Nola and not enough information.

"I have been involved with support groups since 2002, when I was first diagnosed and have been involved with, known folks and read countless stories of folks doing treatment - not too many seem to do well - most have to stop or develop horrible sides.  The ones that do clear the virus, usually are 2a's or b's - I can't recall any folks with 1 a or b clearing it or remaining clear - I am sure that there are but I have not seen them. In 7 years. "

Well, I confess to being very puzzled with this observation.  I was .. still not used to saying "was" .. a Genotype 1a/1b - I had a combination.  I'm SVR.  If you stick around this forum and if you read the archives, you will find tons of us who are Genotype 1 and who have our cure - our SVR.  Furthermore, most of the clinical studies target Genotype 1's because they are the hardest to treat and many, many Genotype 1's have been cured there as well.  And further to that, the cure rate of 45% approximately for Genotype 1's is well-documented and based on statistical data, not just a figure that was pulled out of a hat.  That means that there is definitely documenation of Genotype 1's being cured.  I'm very puzzled how you can have been involved in support groups since 2002 and not know of a single case of a Genotype 1 who has SVR'd through treatment.  I'm astounded, actually.  I'm saying that with no disrespect intended. Yes, the side effects are difficult - however I suppose we've decided that we'd rather endure the side effects in our goal for a cure.  Very many of us have managed to do that and have managed to have our cure.  For those where treatment has failed them or who choose to attempt to outlive their HCV, then yes - alternatives need to be explored.

As for Dr. Berkson and his professional stance that there is no cure, that is what he reiterated to me in an email within the last couple of weeks.  I was so frustrated with the information being contradictory that I emailed him directly and he stated he does not believe in cure.  His position has not changed and I doubt it will. So back up to the original question I asked you and the concern I posed to you.  If he, with his credentials that people such as yourself and others would obviously take as authoritative and not bother to question his opinion, him saying there is no cure is misleading at best and dangerous at worst, since those people may not even bother to seek out any other information and may go for the rest of their lives living with Hep C without knowing they can get rid of it if they choose to take the risks - and should have the right to make a fully informed choice.

Trish

[Andiamo1]

I agree 100% with Trish.  I am very puzzled how you could be involved with so many people with geno 1 A or B and not know the real cure rates.  There are endless studies showing the SVR rates with SOC being in the 45% range and the new PIs being in the 60 - 80% rate for Geno 1.

There might very well be benefit to the treatments you are marketing, but you lose a lot of credibility with us when you provide such inaccurate statistics.  I do agree that people that live in rural areas and can't get access to well trained doctors are at a disadvantage, but that does not justify your statement that "not too many seem to do well."

Modern treatment protocol detect the people that are not likely to do well with standard duration and dose levels, and alters their treatment duration, dosage level or stop treating when success is unlikely.

I believe that most people should treat using standard treatment or wait for the new drugs to be approved if they can afford to.  For those that won't or can't treat, there should be alternative treatments.  The way to convince people to try alternative treatments is by presenting data as accurately as possible, provide studies with reasonable patient populations and don't play down the enormous success of standard treatment.

[franke566]

Good Morning and yes I read the several threads in which he used the word CURE and I intend to
take this to my Hepatologist later this morning along with the letter from the Manager of Clinical Operations at the Methodist Treatment Center.I did do a little research on HiM.
He is a G.I. doctor for one and has assisted at Bellevue, Hospital with the followup of AIDS patients who participated in a triple drug cocktail known as Haart and stated that a cure for Aids was imminent and then retracted that statement.  Do you know where Dr. Dietrich is now?  Thanks, FrankE

[franke566]

Thanks for the links Comeagain!  Awwhhh Shucks,( No dis-respect, just being friendly)  since I'm from Texas and all let me pull mah horse to the hitchin post an have us chere a little talk..  Houston, Texas has one of the largest medical centers in the world and is the place people come from all over the world for cutting edge treatment.  I personally don't care for Houston, I come here to be treated.  By the way I admire one of your countrymen, a Dr Clintmalm (spelling) who was the pioneer in Liver transplantation.  Worked thru Baylor in the early 90s  Now I'm not all that familiar with alot of this but I tell you everything I've read says that a Hepatitis C RNA level is standard protocol to test for Sustained Viralogic Response.  I'm not talkin about Geno-type, refractionated whatevers.  Plain and simple blood work that is used today-right now, not 10 or 20 years ago. Here, this moment Hepatitis C RNA levels are used to determine your viral load and or the presence of antibodies for Hepatitis C.  Period.
Physicians do not or seldom ever use the word "CURED" in life or death matters.  Now, having said that I believe to be SVR is to be cured.  Has anyone ever heard of an un-sustained Virologic Response?  Maybe THAT is the question we should ask.  Put that way it takes the pressure off the dr to be honest.  What are the odds ladies. and gentlemen of anyone in this whole world of achieving SVR and then at some point in time becoming unsustained VR?  I believe the word is relapse.  We are in remission.  We are in SVR. and today I will ask my Hepatologist if I am cured of the virus to put cured in my record and maybe if everyone else would do the same the stigma might lessen-but I wonder:  How many Drs would be willing to do that?  Thanks, FrankE  

[Marcia2202]

Dr. D. is at Mt. Sinai in NYC.

There are a few people here on the forum who have treated with him. He has gone through tx twice himself and is now SVR=cured. He seems to be a great doctor. Especially since he has also been a patient himself.

[franke566]

thank you!  I wish he would continue to visit the forum.  Have a wonderful day, FrankE

[copyman]

your comments to Nola are right on. well said. funny how she suddenly appeared after the heated discussion about berkson.  she almost sounds like an employee of berkson :-)

[Andiamo1]

Yes, it sounds like she is his PR person.

[nygirl7]

I noticed that my new physician (not a hep doc) put CHRONIC HCV CARRIER in my notes. I had a flip out at him and he said it was just terminology. I said no it makes it appear I could still give it to someone else  - I have been SVR for three years of 1A and 1B.

He didn't care and it never got changed. I really should fight for that since it could also apply to other people and it's WRONG.

[franke566]

you are right!  I see my Hepatologist in a couple of Hours and I am not leaving (unless he calls security) before he tells me in person and in my chart that I am cured of the Hepatitis C virus...and I want a copy so I can take that across the street to Methodist Hospital and rub it in her face.  Not literally of course.  I've been boasting to everyone I am cured of the virus-That SVR means cured.  Doesn't matter if my liver is gone-I was liking the very idea of beating the dragon.  Have a great day, FrankE

[comeagain]

If there aint no antibodies remaining in some spontainious or  soc treated people (and their aint in som cases)   it most be considered an absolute total cure IMO.

So Berkson if not a quack is very badly informed it seems.

Read the abstract I provided in a comment above it seems like anitbodies do disappear guess its the lgm antibodies ( good enough).

NYgirl I´m not listed anywhere longer as a carrier of hepatitis c after i got my post 6month SVR they took me out of all such registers and journals it ought to be the same in the US one would think!!

ca

[franke566]

Howdy.  Just went to HC-Hepatitis Central and read this:  Mitchell Shiffman, MD Professor in the Virginia Commenwealth University school of medicine, Chief of Hepatology and Medical Director of The Liver Transplant program at the VCU said on May 25th 007:  THE USE OF PEG-INTERFERON OR IN COMBINATION WITH RIBAVARIN, POINTS TO A CURE FOR HEPATITIS C.  THIS PAPER STRONGLY SUGGESTS, FOR THE FIRST TIME, THAT HEPATITIS C IS A CURABLE DISEASE.
There is a whole article on it.  I have to print this and take it to my Hepatrologist-gonna be late!  Ladies, Gents, good day.

[nolachris]

Hi,

These were simply my observations of SVR via the support groups - I have read that 1a- b genos are responding more to treatment - however the success rate is still very low compared to that of other genos - if combo treatment were 90% effective for genotype 1, then I would be for it.  It is not.

And for me, I will never do any treatment that involves the use of interferon - dna and genetic approaches are in the pipeline - I do know that with combo treatment, researchers are realizing that if their is an initial drop after 4 weeks or treatment, then it generally means that it will work.

I wish that more doctors would screen their patients for possible problems prior to that first injection - thinks like high ferritin, homocysteine problems, etc - and do everything possible to ensure that they will stay on treatment -  too many don't and their patients fail treatment or have to stop - which can often times mean that the virus has a chance to mutate, which will make it all the more difficult to treat next time out.

I really don't care who says one is cured from treatment or not - I never argued that point, lol.  For me, I am very satisfied with using LDN and alternative treatment.  For ME, it is working and I am very happy with it. And it is there for the many others who feel as I do.

Thank you

[nolachris]

The other night, I was browsing the web and found my blog on this forum - before I read the thread, I joined the forum so that I could see what was going on.  And I saw that a Dr. Berkson thread that looked interesting had been removed.

So I posted my story thinking that I was among receptive folks who might be interested. And to clear up some of what was being said about Dr. Berkson, who I very much admire, as do countless others.  It is very painful to find his name being blemished by people who do not know him. However, I do not work for him though I answer several emails a day about him and his protocol

That is it in a nutshell.

Thank you for sharing your forum with me - I will now return to my own forums where people also believe as I do.

Thank you and good luck!

Nola Chris

[Andiamo1]

"Thank you for sharing your forum with me - I will now return to my own forums where people also believe as I do. "

Spending all your time with people that believe as you do, means that you will never learn anything new.  There are some very well educated people here that research before they post or get into discussions that force everyone to do some research.

The points raised against your arguments are valid.  Many of us are emotional when we believe that someone is trying to take advantage of anyone with this disease.  You and Dr Berkson are perceived that way because you openly spread misinformation.  Perhaps that was not intentional.  If that was the case, why wouldn't you stay on this forum and educate us or learn from us?

We are emotional about this, but we are not pig headed.  If you can point us to valid studies that show where we are wrong, then please do it.  If you can't and we can point to valid studies that show you are wrong, why not admit it and be a contributor here?

[HepperReba]

Could you please explain what LDN means? Thanks so much.

[Willy50]

Low dose naltrexone, you can google it and probably find several threads in this forum explaining/ discussing/ arguing the issue.

Here is such an argument and some posts which support and pick apart some arguments.

http://www.sciencebasedmedicine.org/index.php/low-dose-naltrexone-bogus-or-cutting-edge-science/

It's an interesting read; sometimes informative, sometimes counter-informative, has some reports from users, and sometimes degenerates as some threads seem to..... but...... not bad.

willy

[HepperReba]

Thanks Willy50 - I am going to check that out.

[UKgirl55]

Wow, another really old post.