LDN

[chuckles333]

Is anyone familiar with treatment using LDN? Is this stuff for real?

[mikesimon]

"But my question is, if fibrosis is decreased during conventional treatment that does not result in SVR, then why do you say that SVR is necessary for it to happen?"

To my knowledge it doesn't happen - decrease in fibrosis - in the absence of SVR.

My point was that irrespective of protocol my reading suggests that in an HCV setting when there is detectable virus there is no reversal or decrease in fibrosis - no improved histology.
If you have studies showing HCV infected people improve their histology without achieving SVR I would love to see them.
BTW, your numbers look improved but without a biopsy or one of the newer tests - Fibrotest for example - I see not evidence of histological improvement but then I have no baseline to compare it to either. And with biopsies a lot depends on the guy reading it and though you have the best doctor in the world I like to see a seasoned hepatologist reading slides before I get too excited.

Good luck,
Mike

[mhudnall]

I understand what you say Mike. I am not surprised that maintenance itnerferon/riba does not result in better health or prognosis. But that study is measuring a much different protocol than mine.

But my question is, if fibrosis is decreased during conventional treatment that does not result in SVR, then why do you say that SVR is necessary for it to happen? I remember not long ago the doctors were saying that fibrosis is completely irreversible, in contradiction to the evidence. Now they have backed off of that, but to go from a completely wrong stance to a modified stance in the face of evidence, means to me that they might not know what they are talking about.

Histologically, I was a stage three for fibrosis 5 years ago. But look at my GGT and fibrinogen. That does not look like a stage 3 or 4. All my LFT's are good, platelets are good, bilirubin is good. In fact all my labs are normal except enzymes. viral load and hypothyroid associated labs, and I do extensive labs quite often.

Practically speaking, a very low viral load is certainly more favorable than a very high viral load, which I had recently. I also agree that I would rather have low enzymes than high, but I also did not mention that I had a fever on the Saturday before my Monday draw, so that probably skewed things a bit.

You know, phosphatidylchline has been shown to be hugely protective against fibrosis and cirhosis. Look at it in pubmed. Also alpha lipoic acid, and glutathione, and antioxidants, selenium, and on and on. I can send you a pdf on the great things that phosphatidylcholine does for damaged livers and reversal of fibrosis if you'd like. Orthomolecular nutrition is a long-established science-based field for these types of therapies, backed to the hilt by science. see www.orthomoleclular.org But my question is, since these nutrients are proven to be effective, then why are they taboo for doctors to use them? Just because they are not drugs does not mean they cannot significantly improve bad situations. To argue that only drugs are appropriate for hep c is to ignore the science.

And Rocker, I have not studied blue-green algae for these uses, but what I do use is a prescription only Japanese product, approved by their Ministry of Health since 1974 called LAENNEC Human placenta extract. It increases insulin-like growth factor 1 (IGF-!) and is filled with growth promoting cytokines, etc., to help stimulate re-growth of liver tissues. The company harvests about 500 human placentas from Japanese hospitals every year to make it. It has no side effects, and the Japanese Ministry of Health is usually even more cautious than our own FDA. It is prescription only.

Here is a link: http://laennec.wordpress.com/

My doctor is the best on the planet, I believe. He is a psychiatrist, MD and neurologist. He worked with the famed Dr. Abram Hofer of orthomolecular nutrition fame. It is also wonderful that we are completely on the same page with how to proceed. So I am not worried about quackery except when I go to a conventional doctor (in my opinion).

In the old days, the holistic healers were pushed aside by the new doctors using quicksilver, or mercury to treat patients. They called them "Quacks" short for "quacksilver". It is ironic that now the doctors using toxic drugs are calling the gentle methods used by holistic healers quacks, in a reversal of logic.

Sorry - I couldn't resist! My biases are plain, and I acknowledge them; I plead a mea culpa. I wish we all could acknowledge our prejudices. But I think if we all look at the science, then we can come to slightly more objective conclusions.

I wish everyone well on their paths, whether it be conventional medicine or not. But I think we all should realize that there are many things we can do to improve our situations, even if we are going the path of conventional treatment. What is wrong with strengthening your immune system with LDN in the face of chronic viral disease? In my opinion, use of many of the substances in my protocol are common sense, even for people going the conventional route. If conventional medicine was doing the very best possible job, most of these things would be part of every protocol.

Like I said we all paddle our own canoes. Just don't let your doctor paddle your canoe - he's too busy and not very interested.

MikeH

[Rockerforlife]

Have you done any research on blue green algae and (stem enhance)...which enchances stem cells to regrow liver cells?

[mikesimon]

You wrote"

"No, there was a study that showed by pre and post treatment biopsy, fibrosis decreased over the time span of interferon treatment due to the fact that the viral load was lowered or non-detected over that period of time and inflammation was reduced. I think it is also established that fibrosis can decrease significantly by itself after successful treatment. This is due to the lack of inflammation and normalizing of the tissues. I think I saw that on this site on the home page today. The poster claimed up to two stage decrease in fibrosis after SVR."

From the information I have read liver histology only improves in patients who have achieved SVR - eradicated the virus. Lowering viral load or liver enzymes has not been shown to be associated with, or responsible for, improved liver histology.
Here is a recent excerpt from Clinical Care Options in which Ira Jacobson MD is discussing the results from Peg/Riba maintenance treatment.

"Despite the fact that there were greater reductions in viremia, alanine aminotransferase, and necroinflammation in the patients who received peginterferon alfa-2a, none of the important clinical outcomes were favorably affected by the use of maintenance therapy as shown in the rates of death, decompensation, hepatocellular carcinoma, and increase in fibrosis on liver biopsy. So, this has widely been perceived as a negative study. In my practice and in those of many of my colleagues, these results had a notable dampening effect on the application of maintenance therapy in practice."

This is not new information. I think we all feel better when we see a viral decline in any setting as well as when we see low liver enzymes and my personal opinion is that, generally speaking, low liver enzymes are better than high liver enzymes. But that is not to say that low enzymes means improved or even stable liver histology. Improvement in liver histology in the hepatitis c setting is invariably seen in SVRs and not in those patients who do not achieve viral eradication notwithstanding a decline in viral load or liver enzymes - you gotta be SVR.

For some time now many of the experts have believed that the damage from HCV is primarily due to the immune response to the virus, which often results in collateral damage whereby uninfected cells are destroyed along with HCV infected cells. I have always believed that might explain why people with low viral loads can present with advanced liver damage while some patients with high viral loads present with little liver damage. In fact, many investigators suggested that the hepatitis c virus, in and of itself, is not cytopathic. Recently there is new evidence that suggests that the virus itself may very well be cytopathic. Still I think most people agree that immune response is a major contributor to inflammation, cell death and fibrosis progression.

I sincerely believe that the vast majority of member here wish you the best in whatever course you pursue. Deep down I think we'd all like it if your approach was successful. But, most all of us have searched and scoured the internet and everywhere else for some viable approach other than interferon and ribavirin. I think it's safe to say that the vast majority don't believe that any alternatives presently exist aside for the PIs on the near horizon - hopefully. And we are a suspicious group because it's true that we have seen snake oil salesmen peddle their goods here along with the inevitable heartbreak for those who buy their junk science. So that may explain our response when we hear that someone has another way.
We'd love it if it were so.

Mike

 

[mhudnall]

Well, I don't know about them being not what I expected. Just because my enzymes are elevated is not that great a cause of alarm - that is the most transitory of all the tests. I have seen enzymes vary 25% on a split sample. They are also notoriously variable due to things like physical workouts and massage - both of which are things that I do frequently.

The LFTs and the viral load are all pointing in the right direction, so I am quite pleased. That is my opinion, and the opinion of my doctor, but anyone can have a different opinion.

However, I have to disagree with you about the safety of the interferon/ribavarin. Retinal scarring, hypothyroidism, and mitochondrial damage are all associated with tx - and that's just off the top of my head. I'm pretty sure there are a lot more forms of damage that are known. My TSH was normal all my life until tx, now I am hypothyroid. Here is a paper that talks about the damage that ribavarin does to mitochondria:
http://www.hepatitis-central.com/mt/archives/2009/01/hepatitis_c_fat.html

Anyway, I'll post again when I do my next labs.

I feel great, by the way and my energy keeps going up.

Good luck to you, in your own canoe trip through life! I genuinely hope you find your way, no matter what route you take.

Mike H

[Trinity4]

I was doubtful when you first posted and remain the same now.  But as you said, everyone must paddle their own canoe.  Your results and not what you expected and show little promise even with a reduced viral load.

You have an anti treatment drug approach and that's fine but please know it's not the tx meds that damage the liver although in rare cases, treatment drugs have effected the liver adversly. In most cases enzymes return to normal while on tx.  It's the chronic hepc virus that remains in the body whether the vl is low or high which effects ALT and AST.  Inflammation continues and the liver is ravaged.  
That's really the basis of it, eradicate the virus, the liver will thrive again.  Without cure, no chance of that happening.