Aa
A
A
Close
Avatar universal
mhudnall and Dr Berkson
I have waiting to see furter posts on your treatment with Dr Berkson.  How has it been going?  His work with Alpha Lipoic Acid and I believe LDN peeked my interest.   You were giving updated reports on your viral load and alt ast numbers.  Its been awhile and just curious as to where you stand now.
Cancel
300 Answers
Page 15 of 15
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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."
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
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





Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
96938 tn?1189803458
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
96938 tn?1189803458
I would guess that Dieter Häussinger ordered a whole lot of biopsies before Fibroscan became available to him
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
I would guess that to.
He is  using FibroScan for 5 years now and they have a lot of experience with it.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
179856 tn?1333550962
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.


Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
619345 tn?1310345021
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Bajawoman,

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

Thanks so much for the help!

Mike H
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
179856 tn?1333550962
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.  



  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
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 .

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
96938 tn?1189803458
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
619345 tn?1310345021
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
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.





Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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


Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
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.

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
179856 tn?1333550962
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
179856 tn?1333550962
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
this why I went to see him
can`t get enough positive information

thanks again
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
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 ?
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
When I last posted several months ago my enzymes had been creeping up for about a year. My ALT had gone from near normal when I started LDN to around 150 a year later.

I decided to address this in two ways. I increased my dose of LDN from 3mg to 4.5mg. Also I went on Dr. Zhang's herbs.

My new labs have just come in:

AST 37  (10-50)
ALT 42  (2-60)

My VL has not yet come in. I will post it when it does. On my last labs it was 300 thousand. Everything else on this set of labs was in normal range.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
Mike,

Absolutely FANTASTIC !!!!!!!!!!!!!!!!!!!

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Hi Mike,
Very impressive improvement.  Thanks for sharing your update.
Ev
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I am very happy for you. This is a very good improvement.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Thanks everyone for the kind comments. The herbal formulas in Modern Chinese Medicine  are kind of standard in the Chinese system of care. Zhang's herbs contain many of the same herbs listed in the clinical trials listed in the following review:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720970/pdf/1749-8546-4-12.pdf
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Sorry,

Forgot to include this study on another different TCM formula:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2695921/
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
just four weeks ago I experienced a rapid ALT drop from 56 to 29 as well as AST
from around 30 to 14 .
I first was under the impression it all had to do with the ALA IVs received from
Dr. Berkson. 3 weeks later my ALT is back to 54.
I was also doing Dr. Zhang protocol which I had stopped during Berkson IVs.
I am now taking Dr. Zhang herbs again and if my ALT drops again it will be
proof of their effectiveness in lowering ALT&AST for me as well.

Bali05
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
148588 tn?1465782409
I'm curious about the Fuzheng Huayu formula studied in the first trial cited. If the formulation is expressed in the standard way of TCM formulas (the #s in the right column being % of composition) then only 24% of the formula is there. The remainder of the formula is probably what a TCM practioner would call 'balancing' components (as if your IFN came pre-mixed with neupogen or your riba with epogen).

Radix Salviae Miltiorrhizae 8.0
Fermentation Mycelium Powder 4.0
Fructus Schisandrae Chinensis 2.0
Semen Persicae 2.0
Pollen Pini 2.0
Gynostemma Pentaphyllammak 6.0

The Gan C Pian formula I co-txd with on SOC had a couple similarities (same % Salvia Root, three times as much Schisandra Fruit).

Ganoderma Lucidum 9.0
Radix Paeoniae Rubrae 9.0
Radix Astragali Membranacei 8.0
Fructus Lycii 8.0
Radix Salviae Miltiorrhizae 8.0
Herba Artemisiae Yinchenhao 8.0
Herba Hedyotidis Difusae 8.0
Radix Bupleuri 8.0
Fructus Gardeniae Jasminoidis 8.0
Tuber Curcumae 8.0
Radix Polgoni Multiflori 7.0
Fructus Schisandrae Chinensis 6.0
Fructus Meliae Toosenden 5.0
(Yeah, I know you're not supposed to mix Bupleurum with IFN. Probably one of the reasons I went a little wacky on tx. But I'm muuuch better now.)

Interestingly, the guy who compounds this stuff predicted that co-txing with this might lessen my side effects. Not the reason I was taking it. More into the 'throw everything including the kitchen sink' approach to tx at the time ('02-'03). Also, since I had an easy to tx genotype and only mild fibrosis after carrying the virus for 30 years, I chose to take the risk of messing up myself and/or my tx. My gastro asked me on more than one occasion if I was taking all my meds since my blood counts stayed so close to normal range.
Did I SVR because of the herbs or in spite of them? Good question.

Also curious about the complete listing for Zhang's formula, if you have that available.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
The Zhang's Herbs I'm on are:

Hepa Formula No. 1A:
baikul scullcap root
milk thistle seed
schizandra fruit
capillary artemesia (whole plant)
san-qi ginseng root

also Gall Formula No. 1:
Chinese thoroughwax root
capillary artemesia (whole plant)
coin-leaved desmodium (whole plant)
Dandelion (whole plant)
Gardenia fruits
Costus root
tangerine rind (aged and immature)
red-rooted sage root (Salvia)
****-quai root
baikul scullcap root
scabrous gentian herb

also Circulation P:
Safflower flower
peach kernel
****-quai root
cnidium root
raw rehmannia root
Paeonia lactiflora PALL root
achyranthes root
Chinese thoroughwax root
Chinese licorice root
balloon flower root

Also Glycyrrhizin:
Chinese licorice root
Paeonia lactiflora PALL root

Also Cordyceps

Sorry about the common names - the list above is what is on the labels. Also they are listed as proprietary formulas, so the exact dosages of each companent are hidden. All  of the ingredients are extracts.

Zhang gives you a free 15 minute phone consultation if you read his book. He says that 80% of his patients achieve normalized enzymes. After three consecutive labs of normal enzymes he switches you to more anti-fibrotic formulas.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
148588 tn?1465782409
No problem on the common names. The formulary I have access to gives these as well. I only use the Latin in these posts because people have a tendency to read this stuff and start using the components indiscriminately. Several of the ingredients in what you're taking are in the two formulas I used while on SOC. And you're correct - the people who make this stuff probably wouldn't be happy that I'm giving exact %s on an open forum.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
Hey Mike,

Zhang put me on

Hepa Formula #2
Gall #1
Lingustrin
Circulation P

In addition I now also take

Glycyrrhizin +Olive essence


Why are you on Hepa#1 instead of Hepa#2 formula
and also how come you are not taking Lingustrin ?

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
338734 tn?1377163768
Don't forget that ALT/AST and other enzyme levels tell nothing about liver damage often until the liver actually begins to fail, and then it is often too late for anything but a transplant. So, I hope you are not kidding yourself that just because you are maintaining normal or lowered enzyme levels that this means that your HCV is being cured or even in check. My liver enzymes were still in the upper normal range when I was diagnosed with Stage 4 (cirrhosis) and HCC. I was basically given about 6 months to live. Fortunately for me, I received a transplant. Closer monitoring of actual liver disease progression and treatment could have spared me this dangerous and expensive surgery, not to mention leaving a donor liver available to another recipient whos life could have been saved.

Treating HCV and liver disease is a serious matter not to be influenced by unproven claims and word of mouth testimonials as substitution for medically proven treatments..
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Bali,

I started with the same herbs as you based on my interpretation of Dr. Zhang's book. But Dr. Zhang changed them to what they are now based on my staging (F3) and the high enzymes.

Walrus - good point about enzymes. They are known to be low in patients with cirrhosis due to the fact that there aren't that many hepatocytes left to be inflamed. Regular labs are important to accurately measure your condition. In my case I do extensive labs every four months or so. A fibrosure five months ago indicated F3 staging (inadequate as the test may be). Platelets, albumin, bilirubin, BUN/Creatine and all other LFTs are well in normal range and have been for quite a while. My problem was that my enzymes had been high, were brought down to near normal when I started LDN, but had been creeping back up over the year, reaching ALT of around 150 five months ago. The only changes that I made were increasing my LDN dosage to 4.5mg and starting Dr. Zhang's herbs. Both of these measures have been known to decrease enzyme levels, and they seem to have worked for me.

I personally do not think that elevated enzymes are as bad as some people think, or that normal enzymes are as beneficial as some think. Fibrosis - activated hepatic stellate cells, secretion/resorption of collagen, HSC myofibroblast formation are independent of inflammation or viral load. For instance, vitamin A can increase enzyme levels, but in animal trials, livers pretreated with vitamin A and exposed to toxicity produces less collagen and fewer activated HSCs than liver not so pretreated, yet the vitamin A pretreated liver has a significantly higher level of AST and ALT liver enzymes after the toxic exposure. In other words, an elevated liver enzyme count can be consistent with the prevention of fibrosis in some cases.

I personally take vitamin A, vitamin D and niacin - all known to increase enzymes. I did not stop taking them because my enzymes were high. However, I am glad that my enzymes are back to normal range nonetheless.

I also know someone on Zhang's herbs and LDN that still have high enzymes. I'm not saying that my program works for everyone. It is nice to know some of the available options, however.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
Hi Mike,

Greetings from Berkson land.The weather is great and the ALT is going down!

Met another HepC patient during infusions today. Was dx very late

with ALT in the hundreds , enlarged spleen, ascites ect.....

Has been doing ALA IVs for some time and now has no more ascites and lives

normal life. Said his liver is in fact rebuilding itself.

Will find out more , just got here.

My latest ALT after starting Zhang protocol again 47 from 54, AST 21 from 27 in six

days. Hitting the right direction and since my ALT was 29    4 weeks ago  that is what

I am aiming for.

to Walrus:  I well know LFTs alone are by no means a measure of liver damage.

That`s why we do all the other stuff , Fibroscan,Fibrosure,Ultrasound, CTscan and

other lab tests. A low ALT/AST however and time of infection (how many years) can give

an idea of progression rate.If your liver is so damaged that it can not produce elevated

ALT/AST anymore you will be able to see it on CTscan or ultrasound. The same for HCC.

Another reason to always check AFP from time to time.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Just got my vital load: 2770

Previous high: 7 million

Before LDN: 1.6 million

Before bumping my LDN dose from 3mg to 4.5mg: 300 thousand.

Previous low: three months after beginning LDN - 57 thousand

The increase in LDN dosage is probably responsible for the reduction, although the addition of the Zhang's herbs might well have helped a lot.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
92903 tn?1309908311
Sounds to me like going to a gynecologist and asking them to read a brain scan if you ask me.

You're right about that. T'would make more sense to ask what time the train was due to arrive. ;-)
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
979080 tn?1323437239
Three words:

Super,Super,Super !!!

Congrats

Bali05
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Your Answer
Avatar universal
Answer
Do you know how to answer? Tap here to leave your answer...
Answer
Answer
Post Answer
A
A
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
What Is Hepatitis C?
Learn about this treatable virus.
image description
Diagnosing Hepatitis C
Getting tested for this viral infection.
image description
Just Diagnosed? Here’s What’s Next
3 key steps to getting on treatment.
image description
Understanding Hepatitis C Treatment
4 steps to getting on therapy.
image description
Your Guide to Hep C Treatments
What you need to know about Hep C drugs.
image description
Managing Side Effects of Treatment
How the drugs might affect you.
image description
Making Hep C Treatment a Success
These tips may up your chances of a cure.
Recent Activity
1747881 tn?1358189534
Blank
hrsepwrguy https://www.youtube.com/wat... Comment
9 hrs ago
317787 tn?1473362051
Blank
Dee1956 commented on CDC Becoming Involved...
9 hrs ago
Avatar universal
Blank
Whattoodoo commented on Tips on telling a col...
Nov 20
Top Hepatitis Answerers
Avatar universal
Blank
317787 tn?1473362051
Blank
DC
1747881 tn?1358189534
Blank
Greeley, CO
683231 tn?1467326617
Blank
Auburn, WA
7469840 tn?1409849436
Blank
San Diego, CA
Avatar universal
Blank
Hepatitis C Community Resources
Top Hepatitis Answerers
Avatar universal
Blank
317787 tn?1473362051
Blank
DC
1747881 tn?1358189534
Blank
Greeley, CO
683231 tn?1467326617
Blank
Auburn, WA
7469840 tn?1409849436
Blank
San Diego, CA
Avatar universal
Blank