I would also wonder if he is a fraud why nobody has corrected his wiki page?
I also wonder if absence of evidence is the proof that this is fraud? I believe that one of the deleted threads showed that he was trying to raise money for a trial. It was deleted because it was claimed that this was an apparent attempt to use this board for selling. (I'm mentioning this neutrally just for info; not evaluating the decision).
According to his article that Port posted and I just reproduced above he was claiming that TX with this method cost about 2000 dollars per year.
Gruel? I love gruel. It has sustained millions of people throughout history. And, by the way, I like mine extra thin. Does this make me a Berkson Disciple?
I guess after 190+ threads we have finally concluded that there really isn't anything of substance to discuss concerning Berkson aside from - should we be allowed to discuss him and should patients undergo his treatment approach.
I say "yes" to both questions.
Regarding discussion of Berkson: I hear he's a pretty amiable guy.
Any comments or suggestions regarding his personality?
Well, personally I don't think he's a fraud - with one remaining caveat. I think his view on what is a cure differs from mainstream - which he was blunt and open about and explains - what I don't know and what concern remains is if he leads the uninformed to believe that there is no cure or does he explain what he means by that to the uninformed. Not so sure they'd get the distinction and might end up doing management of their HCV thinking it's the only option. That is a concern for me .. and I'm gonna ask him. If he's not open enough about this ... well .. the dark side is that having people on maintenance for their HCV means repeat customers. I don't like the implications of that IF that were the case.
Seeing as I personally want to be done with Hep C, I would not have gone to Berkson. However, if treatment was not an option for me or if I didn't want to go the treatment route and my choice was to live with my HCV, I would be investigating the treatment he uses. I did see a number of posts on ratemymds.com or something to that effect (wayyyy up in this thread) where some people with HCV have seen a noticeable improvement. I personally intend to keep investigating for my acquaintance who has very little options - he's incredibly discouraged and out of energy and I have some to share so I'm going to continue to investigate. The treatment Berkson uses seems to bring about an improvement .. not a cure .. and nor does he claim cure .. in other diseases such as autoimmune diseases. Those credible sites that do mention Dr. Berkson's findings on LDN, ALA, etc. tend to say it warrants further investigation .. and I guess I feel the same way and intend to continue to investigate. Dog with a bone. Will continue til I have enough information to satisfy the need to know.
I did find more about him on Google Scholar than on PubMed .. just the same, thin gruel and I'd be happier with a bit more. At the least, I would not have encountered ALA or LDN .. others have previously, obviously .. I haven't and I find it mighty interesting and more to read. And .. also a bit in the dark ages about Mike Simon's link as well in spite of all the discussions on the forum on this topic. Seeing the titles really caught my interest and I plan to do more reading there too. All good stuff.
I don't like his total view on the cure thing but I'm not about to throw the baby out with the bathwater either and I still want to know more about how his treatment does or doesn't improve the situation for those who must or choose to live with their HCV.
Willy: the cost of $2000/year might be an older "quote". If his therapy is $1300 for a week and you do it every six months, then that's around that figure.
Mike Simon: While I think your comment regarding Berkson's personality is with tongue planted firmly in cheek, there actually IS an answer to that .. up to you if it has any credence. :) Most recent rating is Oct. 1/09.
I do appreciate the input from everyone - I have learned quite a bit from reading the various inputs. I apologize to all for the length and number of my posts on this. I'm opinionated and wordy as a given ... this particular topic really got me going.
We all have to make decisions, in some cases life dependent decisions. If we make those decisions based on claims that are not substantiated, we put our life at risk. Anyone that chooses to treat with Berkson's methods instead of SOC or the PIs, takes a significant gamble. I would not make that bet myself and I hope most other people will not.
If Berkson has a legitimate drug, someone will create a trial that proves it. In the meanwhile, we are better off avoiding unproven methods. There are many drugs and treatments that fall outside of mainstream and sometimes they are eventually proven to be efficacious.
The question for everyone facing HCV treatment is do they want to gamble on something unproven or go with something that is highly likely to provide SVR.
"The question for everyone facing HCV treatment is do they want to gamble on something unproven or go with something that is highly likely to provide SVR."
Keep in mind ... some have decided to forgo SOC as being a gamble of another kind. I've had my days where I wonder if I made the right choice to assault my body with interferon, ribavirin and a Phase II PI but on the whole, it was the right choice, just a bigger gamble than I knew I was making at the time. Some don't have a choice and SOC has failed them for now and perhaps for too long such that they don't have many alternatives.
If one is after a cure, however - I wouldn't be going to Berkson as he doesn't offer a cure. He offers management therapy and still remains to be seen how effective it is. Certainly possibilities, not enough hard data - in the same vein as not quite enough hard data for me to be comfortable going to 24 weeks with an RVR if I was doing SOC if I had the choice to go 24 or 48 weeks.
Sorry. You all are far too interesting to discuss things with. I'll try to limit my posts here.
Truthfully Trish, I haven't learned anything in the 196 posts here that is relevant to HCV.
You said: "The treatment Berkson uses seems to bring about an improvement .. not a cure .. and nor does he claim cure .. in other diseases such as autoimmune diseases. Those credible sites that do mention Dr. Berkson's findings on LDN, ALA, etc. tend to say it warrants further investigation .."
That is so weak I was stunned when I read it. You really have said pretty much the same thing in a number of posts and you must realize that you haven't added anything. You emailed the man - so? He doesn't have reviewable studies and that certainly doesn't speak well for him and it provides us with nothing to work with. I have seen his credentials extolled - MD/Phd. If this guy has been treating HCV to any extent he knows he has to have studies to be credible and reviewable Hey, if someone has no where else to turn and they want to see Berkson that is fine with me. Could it conceivably help them? I suppose it could. As might transcendental meditation (Transcendental meditation (TM) may reduce all-cause and cardiovascular mortality in persons older than 55 years with hypertension, according to a pooled analysis of two randomized trials published in the May issue of the American Journal of Cardiology.) so maybe it could also help HCV patients. At least there is one article about TM in a real journal.
If you want to pursue this approach I doubt anyone has any problem with it. And, after you do, let is know how it went. But, to post yet another rehash of basically nothing is pushing it.
About my post about Berkson's personality: Yes, you read it right Trish. And really, I have no idea whether or not he is amiable. And that is about as relevant and scientific as anything anyone, including you, has said in this thread. I mean, come on - you Googled "Scholar" and found more articles and are going to read them and so on and so on. You want to read them - great. But, until you do, the fact that you intend on researching more, of whatever it is, is not new or news or relevant or interesting, in my opinion.
You say that you're opinionated Trish - well, what is your opinion about the efficacy of Berkson's approach. I missed that. You claim to be, or Portan claims that you're, scholarly. From a scholarly perspective - What is your opinion?
There is nothing in any of your threads that is relevant to anything beyond - can we talk about him and could his approach conceivably work. Standing on your head could conceivable help an HCV patient but I would not post too many threads saying that it should be discussed and I am going to research it blah blah blah.
Standing on my head - Mike
Almost everything in life is a gamble. The question is what are the odds?
The odds of SVR with SOC and especially with PIs are heavily in your favor. The odds of avoiding advanced liver disease with Berkson's methods are completely unknown.
I think people should make whatever choice they need to make. They just need to understand the probabilities of what the outcome might be with either choice.
While we have no evidence of fraud, in my view we do have evidence of dubious behavior. Any trained scientist that offers treatments that have not been tested according to standard methodology, and lots of money involved, is suspect in my view.
I would like nothing better than to see someone come up with a study that shows ALA to be effective.
Your point is taken. I've said enough. I don't have an opinion on the efficacy of Berkson's therapy until, well, I've researched more - however, I tend to think it has possibilities based on the things I've read already or I wouldn't bother to put any time into it, would I. Having said that, I've imposed my "opinion" and posting enough on everyone obviously and I'll simply take that offline and satisfy my own need to know.
On a final note .. I have never claimed to be scholarly and I wouldn't. I'm not anywhere close to scholarly. I'm just simple me...simply opinionated and like to understand things and obviously annoyingly so. I can't help what other people say about me, Mike. It doesn't make it so. Other people have also accused me of wanting to be the forum diva and of having a hidden agenda. Doesn't make it so either.
"He doesn't have reviewable studies and that certainly doesn't speak well for him and it provides us with nothing to work with. "
All I know .. is that what work he has done is referenced on sites like the American Cancer Society, PubMed and whatnot .. and they find it interesting enough to say that further study is warranted. They don't dismiss it outright. Personally.. that is my opinion on the efficacy of it. Further study is warranted. Some of his connections with the FDA on ALA research etc...warrant further research to me also. So..offline I go. That's it..that's all.
"...there really isn't anything of substance to discuss concerning Berkson aside from - should we be allowed to discuss him and should patients undergo his treatment approach. "
WHY would anyone even want to continue to talk about a man who's work is not documented as to doing anything to help HCV at all is the question that is mysterious.
Certainly talking about things that actually have been proven effective and pointing people in that direction make much more sense, rather than wasting time discussing the merits of one person who is sketchy at best?
I don't disagree that further study is, or maybe, warranted" Trish.
But, that really doesn't leave us with much to discuss right now.
Hopefully there will be further study and, hopefully then, we'll have something to discuss.
All I know for sure is while I was there I spoke with real people with real problems. They had gone with SOC and without SVR and now had other issues. What do you suggest these people do? What would you do if you were in the 60% that had no success with SOC? Ever notice how few people stay on the board that don't get SVR.
What would you do if you were in the 60% that had no success with SOC?"
I would seek an alternative but first make sure it was proven to do something rather than risk the rest of my liver taking miracle juice and mesosilver. Nobody on this forum has EVER said that those without SVR should do nothing however; 99% of us do believe that they should do something that is proven to be effective.
But really right now there is just nothing to show that it does anything or that it warrants any further discussion so that people aren't errantly mislead into thinking it might.
If anyone remembers before Tele and Boce, everyone on here was very careful to say that they did not know if these drugs would pan out. But, these were legitimate clinical trials and as we know they are proving to have great results as to where their frontrunners certainly did not.
NOBODY doesn't wish you the greatest of success Upbeat.
What would you also suggest for persons like the woman in my support group who have no interest in treatment and have chosen to outlive their HCV...and the other fellow in my support group who relapsed treatment and is not about to do treatment again any time soon, he's a bit too battered from it .. but will need to manage and keep the damage from his HCV under control until and IF something else comes along or simply if he chooses to forgo treatment and attempt to outlive it as the farmer's wife has chosen?
I'm sure you've had to choose strategies to manage your HCV and keep it under control over the many years you've been dealing with this.
Being in the 60% group, I agree with what NYGirl said.
Most liver doctors will tell you that damage can occur for a vairety of reason, not simply HCV attack.
If you already have one enemy lined up at the gate, why risk adding another ally by throwing in untried/unproven remedies which could be worse than the original foe you are fighting against?
I don't know about other doctors, but the leading ones in my area all caution against herbal remedies simply because no one knows for sure if they are harmless or not.
I realize that like IFN is a biological based upon what our bodies produce naturally, then some meds are from herbals which produced desired effects. But those meds came about from qualified quantatitive studies.
With one strike down, it doesn't make sense to me to take a wild swing rsiking a second strike on a wild pitch from a possible snake oil salesman who has no scientific study to back their claim nor attempting to formulate a finding with a qualified quantative study but is just simply trying to make a buck selling you something which may or may not help, and in fact could make matters worse.
Then again as post X in a multi-hundred post thread about a thread which is no longer a thread, this probably has already been said before.
I think it is clear that the topic will likely be allowed. The existence of this thread strongly suggests that.
What is it you want to say? Just say it - as long as it is not a personal attack.
I keep hearing about whether this or that should be allowed. Assuming this or that is allowed - what do you have to add?
"What would you also suggest for persons like the woman in my support group who have no interest in treatment and have chosen to outlive their HCV...and the other fellow in my support group who relapsed treatment and is not about to do treatment again any time soon, he's a bit too battered from it .. but will need to manage and keep the damage from his HCV under control until and IF something else comes along or simply if he chooses to forgo treatment and attempt to outlive it as the farmer's wife has chosen?"
I would say, find the best hepatologist you can and get a liver friendly diet and lifestyle from them. I would never recommend trying something that costs as much as Berkson is charging with no proof that it works and at least proof that it does no harm.
"I think it is clear that the topic will likely be allowed."
I can't reach that opinion yet since I haven't heard it from MedHelp and I have yet to see the other rather innoculous thread, started by Upbeat returned to the board.
I'd guess that it is still being decided.
I've been busy and haven't researched Berkson, not since before the thread was removed, not at least enough to add to that discussion.
What would I add? Yes, somewhat like you- that further inquiry was warrented.
To berk, or not to berk: that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die: to sleep;
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, 'tis a consummation
Devoutly to be wish'd. To die, to sleep;
If I could edit, I would. My comment about the Upbeat thread is certainly right; I don't think it's back up.
That part that I would edit is that it was innoculous. Maybe I'm getting my threads confused but there were probably things in it that people on TX found upsetting, thought to be untrue or unfounded.
I also didn't get to read the whole enchilada, so I can't or shouldn't have labeled it as tame. In some senses it was; not a lot of name calling, screaming etc, but it no doubt contained some irritants.
Anyway; it's on ice. I probably wouldn't characterize anything about it now without a fresh read.
You're hard to read sometimes Goofy but, for now, I'll take that as a compliment - a sarcastic one perhaps - but I like sarcasm.
Then again, maybe it's not a compliment.
Regardless, it's always nice to see your name - even outside a good old fashioned poop thread.
Why I was interested in this guyBerkson ( or rather his agenda)was because I sometimes felt worse after I´ve got SVR than before any treatment.
And upbeat opened a thread where he asked mhudnall about dr Berkson.
Hudnall said he wasn´t treating with Berkson but with another doc who had very much the same approach.
He was taking iv ALA , LDN and a lot of other supps and has done so for about a year i think he was 4 years post tx a tx how was interrupted due to severe sx after 12 or 14 weeks not sure here.
For him tx was no longer an option . Mhudnal said he was functioning so very well and has done that for a quite some time after starting this new agenda.
He was suffering from autoimmune sx from tx also mentally illness fatigue and God knows what!
He said he thought the LDN was what has helped him the most, and then some long, later deleted threads followed.
And many(some, many times perhaps it was) people here let their voises be heard of in terms as it was bogus and not enough evidens it would help anybody and this is HCV forum etc go some other place!!
I who have read Double doses posts and quite a few others Frank perrotta is another
who claimed the sx from tx has been and still are although SVR very harch on them.
I didn´t like those posts when I was treating and was thinking just a bunch of hypochondriacs.
Specially since I was feeling so good after my first only 24 week long tx although relapsed.
And I started to feel good 3-4 months post tx after that one, better than in 25 years to be precise.
After second tx although SVR I started to think maybe DD and Frank and the others
aint such hypochondriacs after all.
Still feeling bad fatigued brainfogged with a bad short time memory 6 months post.
I started to get worried so when I saw mhudnalls post about LDN I started to search the web about it. But there was not many studies to find still some interesting info. The lack of studies could maybe be explained by the fact there wasn´t any big money in it for the big med companies
But since the naltrexone 50mg pills has been FDA aproved for about 25 years I thought it couldn´t be so dangerous to try a 12 time weaker dose.
He mhudnall was acused suspected of some to work for the LDN manufactories.
Ridiculous I thought the cost is so little not much money in that business not worth the effort for anyone.
Well I happened to come across a doctor here at MH the rheumatoid expert site
who recomends it.
Couldn´t be all that bogus some has been so sure of then!!
I have been on that stuff for 2.5 months now can´t say it has helped me that much yet though.
I have lowerd the dose from 4.5mg to 3mg the last couple of weeks maybe it has started to help.
I mix it my self it only cost me 5$ a month maybe just 4 now since dose reduction.
Big deal am I swindled if doesn´t work!!
What I´m trying to say here is, fuuuck there is issues here who are related to HCV or HCV treatment some people have been stuck for years with sx and has seen no releaves.
Are they just supposed to suck it up and shut up!!
I was also thinking of a guy (my biggest hero here at forum) he realapsed for the third time on soc. The last time he was on daily infergen for +50 weeks.
That was about a year ago and this is the message he got from his doc when he had relapsed.
You are probably in stage 5 and i dont think its time enough to put you on the transplant list.
Thank you very much, can anybody of us imagen getting such message??!! Not much to hope for there.
I do think hes not alone.
Isn´t it everybodys responsibilty to come up with every info
that possible can give some option (hope) in this and simular cases?
And remember time is short!! We can´t wait for all the tests and studies to be completed here can we!!
I sincerely think the thread should be put back it could be lifesaving who knows!!
And also Goofs fears if not, is very importent I believe!!
I will repost goofs post as a reminder since i htink its as port said on the spot.
by GoofyDad, Nov 26, 2009 02:05AM
By my way of thinking - which is admitedly a little off kilter - MH may open themselves to a degree of liability by this type of action. As they sway away from the stated neutral stance concerning the merit and accuaracy of posts, they could end up with liability for innacurate posts that are left to stand. A user could feel that since MH deletes posts about quackery, those that are left to stand must not be quacking.
Concern about the hope of the folks who are in the more desperate condition of not being able to go with SOC is admirable. In these conditions I am not sure I would be able to fend off any treatment that offered a glimmer of hope. People in this state are very vulnerable and need to be helped in that regard as well as the with the natural desire to preserve their hopes. But they might be served even worse if they put false hope the wrong place.
Thin gruel indeed. Due to the "thin"ness of the gruel, my scam radar went on alert when I read what there was, or rather wasn't concerning Dr. B's TX. I am not saying he's a fraud, but I must admit that the "fraud" explanation seems to connect the dots on the unanswered questions.
If he is a fraud, I wish someone could prove it and put the issue to rest, or better yet, that study could prove him right. In the meantime I do not think that people would be well advised to put their hopes there.
In looking for fraud, people are looking for proof of a negative. Prove it *doesn't* work, and the B-meister is a fraud. The problem with this is the negative outcome can only be inferred through the absence of proof that it works, when outcomes are measured over a large enough sample pool. That ain't gonna happen from within this community.
It seems unlikely to be a situation of mallicious fraud anyway. If anything, it could be simply that the stuff doesn't work as well as claimed. Vitamin C comes to mind.
I think fraud has a range of definitions, some of which include presenting misleading information with the hope it influences people to spend a lot of money for something that might work and might not.
I am not sure where all the claims come from, but some of them are grossly exaggerated: like a keynote address to the NIH that was really an address given to some unknown organization that rented a building on the grounds of the NIH; presenting data from a 3 person study that could never be predictive of the efficacy of ALA, as if it were conclusive proof of positive outcome.
None of this proves that ALA doesn't work, but using it to influence lay people to spend a lot of money is unethical at the least and possibly fraud.
But it is also important to define "what works". None of the alternative stuff will cure the virus. The next step down the consequences ladder would be to make the virus irrelevant to your natural life span. The goal below that would be to prolong your disease-state life span; to improve your prognosis. Below that would be to mitigate pain and suffering. The worst case scenario would be no effect. There is a whole Complementary/Integrative medical community sharing information about alternative therapies to deal with this condition.
There is a huge population of people with HCV. There is also a huge population (50%) of people that treatment failed. I'm one of those. The notion that we should not discuss our options because a self-appointed Purity Squad is afraid that we will poison peoples minds and sway them not to treat is taking your message to an extreme. I made the decision to treat. It would have been a great decision if treatment succeeded, but it did not.
I never try to dissuade people from treating. But let's say that's what I stood for. Would it be okay to jump into legitimate, helpful SOC threads and call it poison, or mock and taunt? Obviously that doesn't happen, and I should be thrown off the board for doing it, but I'm saying that this disrespect is one-way. For someone to state that his tactics are to disrupt alternative threads to hinder the free exchange of ideas and to promote a pro-INF agenda is exactly the same thing. It is shocking to me that in a free society and a (supposedly) free MedHelp that those tactics are not denounced heartily by everyone, including the moderators.
To yank a legitimate thread for a bogus reason, and never reinstate it or explain why is even worse.
You said:"The worst case scenario would be no effect."
The worst case scenario would be - liver damage was accelerated.
But that aside, what is it you have to offer? I read all of the information that was in the thread and I never saw anything that suggested a benefit with the approach. In fact, I recall that your lab values looked worse after you treated for a while.
Everyone is crying and arguing about the thread but not one scintilla of information from the thread has been mentioned or offered. I'd think that if there was such important information in the thread then there would have been some mention of what was said. But basically, we have nothing. And I was an open minded reader and participant in the thread and I saw nothing that would lead me to have any confidence in that approach. It is rather silly when you step back away from all the posturing.
You said, "The worst case scenario would be - liver damage was accelerated."
If anyone was using a therapy that made things worse it would be reported and, if administered by a medical doctor, self-reported and investigated thoroughly. The FDA would love to find such cases; they have a long history of being heavy-handed in regards to alternative therapies.
The only thing adverse in my labs was that my enzymes were creeping back uo to pre-treatment (LDN) levels. My VL is 20% of what is was before and my fibrosis, if I believe my fibrosure test, showed no progression of fibrosis over the last 4.5 years. If the therapies were causing damage it would be apparent and I would stop what I was doing.
The therapies that I have been discussing have been used for quite some time. They have a long history of use, without FDA intervention. The FDA compliance forces would have acted long ago if there was a problem.
Since these are medical doctors, operating under purview of the FDA, I don't think we can pre-suppose fraud or sub-standard care.
As for the content, we were having a discussion about Upbeat's visit to Dr. Berkson. The fact that you have no confidence in the approach has no bearing, in my mind, to the question of whether it should be deleted or not.
What a fancy was of saying that the FDA does not approve nor recognize this as a cure or help for Hepc, in fact with 243 posts is there not one piece of evidence to the contrary that it does in fact nothing except take away your $$$.
"Everyone is crying and arguing about the thread but not one scintilla of information from the thread has been mentioned or offered. I'd think that if there was such important information in the thread then there would have been some mention of what was said. But basically, we have nothing. And I was an open minded reader and participant in the thread and I saw nothing that would lead me to have any confidence in that approach. It is rather silly when you step back away from all the posturing. "
In all fairness, the original thread was where we were getting into discussions on effectiveness of ALA, Selenium and Silymarin. The reason why is that Upbeat had been asked to post the protocol he/she (sorry Upbeat!) had been given and had done so .. and somewhere along the line in the midst of discussing aspects of that protocol and barely getting into it, due to strident protests in the thread and also to MedHelp apparently, the thread was pulled.
THIS thread was largely a response to that action and discussion back and forth about WHY we should be allowed to continue the discussion and vet Dr. Berkson and his protocol for ourselves - NOT a discussion of the protocol itself. If this thread was about the efficacy, I would have liked to have discussion about ALA - have heard from those who were using it and how it is or isn't working for them, same with Selenium and the combination of the three. We have not yet got that far.
You suggested to me that I should not post any longer until I have already researched these things and have something to contribute. I agreed with you and said I would take it offline. Spending any additional time debating whether we should have a discussion is not a good use of my time. However, that applies to me. There might be others who have other things to offer.
The fact that this thread has grown to 243 posts is ridiculous due to the fact that the debate in THIS thread has been largely about whether we should be allowed to discuss something freely and openly - the legitimacy of Berkson's treatment protocol is related to this thread but not the subject of this thread.
We could start one on the legitimacy of Berkson's protocol and of the components of it, however I think we've all been waiting for MedHelp to restore the thread.. or not .. and state their findings.
So you consider the FDA to be a competent arbiter? That's interesting.
VL doesn't really relate to liver damage, as you should know.
Elevated ALT suggests cell death and "creeping up" is not a positive sign.
You can go to a voodoo doctor for all I care. Just don't come here and tout it with absolutely no back-up data. And don't get too worked up when people here ask for some verifiable evidence that what you're doing shows any sign of promise. Hey, if it is so good there should be ample evidence of its efficacy.
It seems the safest way to continue the discussion would be to separate the protocol from the practioner. I've developed an antipathy to Dr. B - but that won't stop me from asking my neurologist his opinion on ALA when I visit him next week. All good snake oil is wrapped around a kernel of truth. I wouldn't refuse to use a silver based med as an antibacterial just because it's touted as a cure-all by the unscrupulous.
Things I've learned in the last couple weeks:
1) There is controversy in the medical world about how meaningful an 'MD/PhD' degree actually is. The PhD part is useful when applying for grant money, but not much else as far as I can tell.
2) If someone says they were 'a keynote speaker at NIH' it might be well to investigate exactly what they mean.
3) You can learn a lot about people by how they attack or defend IFN tx. You can learn a lot about a person by observing the person who introduces them before they speak. The woman who introduces Dr. B on the youtube video is a wonderful example.
4) My gut instincts are still trustworthy.
Are there any studies about how trustworhty gutfeelings are and dsrts in particular!!
Just kidding yes i think we have learned some, I mean this is what Hcv forum is about isn´t it.
People how dare to ask the uncomfortable questions even if a MD or a HR has said something.
Mhudnall i think its great you are feeling better but as mikesimon said if you come here with claims that something you have been taking really is working you better be prepared to show some proof.
I know you have been posting labs but they didn´t show any improvment as far as I could understand it.
In upbeats visit at DrB thread he said Dr B has said the values to look for was albumin and PTT I didn´t look for them when you posted your before and after labs,
did we miss something there??
I can post my labtests before i´ve got svrd and they has always been much better than yours allthough been infected for + 35 years.
My biopsy some months before second tx a 3.5 cm sample said inflammation grade 1 fibroses stage 0 and my alt and ast has been just above normal since I discovered i had non a non b hepatitis 17 years ago .
I could have selled allmost any juice or pill that isn´t dangerous for the liver and claimed thats why my values are so good.
The only reason for such little damage is perhaps its genetic or due to the fact I havn´t been drinking, druging or smoking the last 22 years (smoking is only 20years)
Yes also the fact Ivé been drinking 2-3litres of strong cofee every day for last 20 years could have protected the liver from fibroses progression.
If i did made such juice or pill I bet a whole bunch of people would get a placebo effect and would be willing to wittnes on my website how good they feel and that combined with some horror story about interferon will make the business go up real good I`m sure.
Does anybody remember that guy David who came here with links to his website.
He was selling some milktiztle and other berrys and fruit he had mixed to a juice he was also working in the moviebusiness just as juiceman M Chiin.
Whats with the movie people nowadays I wonder.
When people started to question him he said he did´t know so much about HCV and have learned a lot here and was gonna paticipate in the forum bla bla bla.
When he couldn´t advertise and sell here he just dissapered, says it all imo.
mhudnall i don´t think you know so much about the disease either and have a great opportunity to learn a lot if you stick by.
I think its great you posted about the LDN Im on it been for almost three months don´t know ifs working though.
The last days I have started to feel really good, my brain is coming back could just be the time though.
I´m soon a year post second treatment.
I´m gonna try ALA also R ALA in capsules to swallow not IV .
And its not that expensive about 35$ a month supply.
You are trying to do something, thats very positiv.
I strongly suspect a lot of the not so nice arguments that has been here is due to tx or post tx damage .
Some people are getting more odd after than during tx and it can take time before our brains starts to function again that I know from my own experience.
Keep struggling but if your not a multi millionair be careful where you put your money.
I thought about starting a separate thread. There has been other such discussion of Berkson's qualifications already in this thread and so I thought I'd just add it here....
Who cares about their findings? I do not depend upon MH to legitimize anything or anyone. I keep saying - what do you have and the answer is consistently "NOTHING"
I thought I would see what I could come up with in a bit more than 90 minutes.......
(Super long page about half way down)
October 30, 2007
Living with Hepatitis C: Is an Occasional Drink Okay?
"Immunology researchers have demonstrated that alcohol promotes the proliferation of the Hepatitis C virus in human liver cells. By studying molecular mechanisms in cell cultures, Philadelphia researchers revealed the role of alcohol in aggravating Hepatitis C infection and interfering with **************. “It was already known that habitual alcohol drinkers have higher blood levels of Hepatitis C virus, compared to infrequent drinkers, even when both are infected with the virus,” said Wen-Zhe Ho, M.D., the director of retroviral research at The Children's Hospital of Philadelphia.
Three discoveries resulted from studying alcohol’s effect on the Hepatitis C virus:
1. Nuclear factor kappa B – Ho’s research team clarified why alcohol consumption parallels high Hepatitis C viral loads. The researchers found that alcohol increases the activity of a protein called nuclear factor kappa B. Increasing the activity of this specific protein causes the Hepatitis C virus to replicate. Additionally, nuclear factor kappa B plays a role in hepatic inflammation.
2. Interferon-alpha therapy – On a molecular level, the researchers found that alcohol interferes with the antiviral activity of interferon-alpha. By making interferon less effective against the virus, alcohol defeats the purpose of attempting viral eradication with medication therapy.
3. Naltrexone – Another finding with potential implications for Hepatitis C treatment was that naltrexone, a drug used to help alcoholics avoid relapse, blocks the deleterious effects of alcohol in promoting Hepatitis C infection. According to Dr. Ho, both alcohol and morphine activate opioid systems present in liver cells. These systems produce natural opiates, which play a crucial role in drug and alcohol addiction. This process may explain why naltrexone, which blocks opiates from binding to their receptors on cell membranes, reduced the effects of alcohol on Hepatitis C viral replication. “These data strongly suggest that activation of the endogenous opioid system is implicated in alcohol-induced Hepatitis C expression,” the authors conclude."
Helping Your Liver With Alpha R-Lipoic Acid
Discover why Alpha R-Lipoic Acid is being taken by an increasing number of people with chronic liver disease.
by Nicole Cutler, L.Ac.
(here are a few other articles she has written that pertain to the liver-I have not yet read them. She is one of those integrative health science type people, but who knows? It may have some credence to provide some search tools- willy)
Yes, I know that pancreatic cancer is not HCV. Part of this is to determine if this is a real doctor, a valuable drug or TX. If this is true it would answer those issues.
I suppose that if he has worked for the CDC there must be some reasons or some records. I haven't looked under that rock yet.
Well....it's just what i could find in a relatively short period of time.
Dsrt: "It seems the safest way to continue the discussion would be to separate the protocol from the practioner."
I would agree, as much as it is possible. Berkson's protocol is interesting. Some of the results are interesting. His professional stance on eradication of the virus ranges, to me, from concerning to downright alarming. His protocol, in my opinion, deserves a closer look. His professional stance on eradication of the virus, in my opinion, needs to be challenged.
Here's an article that contains both.
I found this one interesting. It goes into details on the treatment of three patients (possibly the same three patients?) and includes charts. The case studies are interesting.
I provide this, of course, only for those who are interested. For those who consider this blah, blah, blah .. feel free to skip it.
"The first large human clinical studies using ALA in the United States were carried out by Drs. Fredrick C. Bartter, myself, and associates from the National Institutes of Health (NIH) in the 1970s. We administered ALA to 79 people with severe and acute liver damage at various hospitals around the United States, and 75 recovered full liver function. "
I'm trying to track down this particular clinical study. If anyone else finds it, please post it. I'd like to read the results and I'd like to know it was actually done.
Another excerpt from the above link with regards to Berkson himself, which is why I think his professional stance on eradication of the virus needs to be challenged:
I also find it interesting to read Berkson's comments on eradication of the virus - at the risk of starting off the foaming-at-the-mouth pack dog response...
"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. "
That gives me a great deal of concern on various levels.
Now...the first gastro I was sent to was considered a Hep C specialist in my area. He did my viral load and based on my viral load and no biopsy, although he did check for physical signs of liver damage while I was in his office and found little to none..he recommended that I start treatment immediately based on that viral load which was somewhere over 1.3mil IU/mil - 1.3mil was the highest measurable amount of viral load able to be tested in Canada in 2007 when I had my test done. After doing some reading, I realized that viral load was not sufficient reason to proceed with treatment and I insisted on a biopsy - and then switched to a different doctor. Was my gastroenterologist wrong or a fraud? In the Canadian system, the only way he can make more money is to see more patients. I've encountered many patients of that doctor since. He still does the same thing. That's what he believes. What's the point of all this blah, blah, blah .. ? Well, I think the big question is .. is Dr. Berkson wrong about his view on eradicating the virus? I think he is. Is he a fraud? Only if he pushes that view as a way of making more money. Is his viewpoint dangerous? Possibly - if it prevents people from getting treatment to eradicate the virus because they've been led to believe, whether sincerely or otherwise, it can't be done. Berkson is either legitimately wrong on eradicating the virus or illegitimately wrong - because I don't see him as right on that at all. His protocol however needs to be looked at separately, imo.
Along the lines of what Dsrt said, I think we need to separate out some things and not throw out the whole baby with the bathwater.
A repeat of the link on Janis and Friends on Dr. B and his credentials - just as a way of reviewing the legitimately wrong or illegitimately wrong question:
Dsrt: "I've developed an antipathy to Dr. B - but that won't stop me from asking my neurologist his opinion on ALA when I visit him next week. All good snake oil is wrapped around a kernel of truth. I wouldn't refuse to use a silver based med as an antibacterial just because it's touted as a cure-all by the unscrupulous. "
Precisely. I'd be interested to know what your neurologist says .. and also on the administration of ALA by intravenous - IF you end up asking that.
Gosh, thanks for bringing Nicole Cutler into this. Now MedHelp has someone else to check out.
At the risk of developing 'mouth foam', the most charitable thing I can say about her is that she gives legitimate TCM practioners like Zhang and Misha Cohen a bad name.
Dr. K, my neuro, is one in a million. He's the only doc I've ever had who has no problem with his patients getting info off the internet and doing as much research on their own before an apointment. He delights in having an intelligent conversation about his speciality and is totally unthreatened by patients' questions. I would value his opinion over that of a dozen 'MD/Phds'.
Dsrt: "Dr. K, my neuro, is one in a million. He's the only doc I've ever had who has no problem with his patients getting info off the internet and doing as much research on their own before an apointment. He delights in having an intelligent conversation about his speciality and is totally unthreatened by patients' questions. I would value his opinion over that of a dozen 'MD/Phds'."
Sounds like my Dr. W., my hepatologist. We had great conversations and he never minded me asking him anything. There were so many things that happened during my treatment that I really don't think I would have survived treatment as well without being able to dialogue with my doctor the way I could with him.
I'll be interested to know what your Dr. K. has to say.
I took my Neurologist a handful of postings-got a sneer and a Rx for a B-12 injection from my PCP once a month. LOL. This was shortly after Tx and being told I was UND
and I was complaining of Sxs not going away. He said there are no side effects-all in your head! So thats why I brought the posts and papers from Mayo, CDC etc.. Never went back to him again-like he cared. Happy day to ya, Frank
(you wrote) "Gosh, thanks for bringing Nicole Cutler into this"
Hey, in the face of dissippearing posts or threads I'm just trying to get some of the stuff out there into some place where it could be read or evaluated. I hope that you can agree that when things vanish from the forum it makes discussion difficult.
I am unfamiliar with her but it appeared that she wrote a number of articles that were posted at Hepatitis Central Archives. It looks as though she does a lot of writing. Some of the stuff looked innoculous to me, but I was trying to gather, not evaluate or defend.
I guess, like your quote about there being kernel of truth I wonder if there is something. I think that it is far from conclusive or proven, at least what we have yet seen.
There seems anecdotal evidence of some near cures or halting or even improving the damage in some patients. (yes, not even HCV patients)
There seems to be some disagreement about what constitutes proof; viral load data is ignored, improved LFT's are also ignored, anecdotal accounts are also dismissed. In a way..... that's valid to a point. Since the treatment does not intend to "cure", provide a SVR we can't look to the eradication of the virus. I just wonder what evidence one would accept?
We see some people here who are SVR and who do not see improved histology, at least not in the short term. I think that is one of the things that the anti-Berkson camp would accept though. Is that rational or fair to the discussion?
I'm just wondering about the whole thing. I'm interested more than anything. If is was disproved I would not be surprised. I think in short, my view is that the verdict and the sentencing happened before the case was heard. I would have liked to have heard the case first, that's all.
"I took my Neurologist a handful of postings-got a sneer and a Rx for a B-12 injection from my PCP once a month. LOL. This was shortly after Tx and being told I was UND
and I was complaining of Sxs not going away. He said there are no side effects-all in your head! So thats why I brought the posts and papers from Mayo, CDC etc.. Never went back to him again-like he cared. Happy day to ya, Frank"
Sounds like you need a Dr. K. too. :) Sorry about your side effects. Wondering what they are and I'll read back in your posts to see if you've said previously. Happy day to you too .. mine's starting out great, thanks.
Its a matter of plain simple politeness.
You don´t take away a thread saying you gonna investigate and then
If its coming back I wanna know why it came back how MH came to that
And likewise if its not coming back I also wanna know why so.
This is something new and I really don´t know in what direction MH is
Could it be that MH has managed to paint them self into a corner .
At first I thought the idea that MH was gonna investigate the
credebility of a doc sounded very thrilling and interesting.
But then they got to do something, not just talk into the weather.
( In Sweden we have a saying if someone talk and doesn´t mean anything
by it, we call it talking weather. And thats not proper Swedish you
must say talk about the weather but then you talk about the weather
for real. This other saying is more like talking to the air, talk
nonsence, talk bullshiit I think you all know what I mean by now)
Hope I´m not coming out as Grandstanding by all this talk!
I just wanna know what have MH found out about the guy.
If they indeed have found (really have done some research) anything.
Also what conclusions we are suppose to get from this ,what is the
critetia for being pulled and then investigated.
I know MH said they where checking all docs that was mention in
threads, or did I get that wrong.
Find it hard to believe that if not getting it wrong I must say!!
Can MH give another example of a thread been pulled before
Maybe its better to hope for dsrts,that he is or gonna go there to
New Mexico sneaking around armed with a hidden camera and a
Then maybe something will happen.
Thx dsrts for volunteering your a true hero of mine!!
No need for "sneaking". I would think Dr. Berkson would welcome the opportunity to address the questions raised by the members of this forum, rather than relying on second hand e-mails and phone conversations. If MedHelp is unable to do this, they can hire me. Send your list of questions to Cindy and she can arrange to pay me.
In small, unmarked bills.
I didn't notice that. I did notice, however, the ad that states "advanced treatment in Russia is your bridge to recovery" for progressive Hepatitis. If MedHelp has to vet a Dr. before we're able to even have a discussion about him and/or his protocol and it's taking all this time to do it, I can only imagine the vetting process that this procedure from Russia had to undergo to be able to place an ad on the MedHelp site. I certainly hope MedHelp will share their findings with us on both of these protocols soon.
I am sorry this has taken so long, but we have been waiting for replies from our liver experts. Our experts agree that Dr. Berkson's program offers nothing "new". Further, there is no peer reviewed study that suggests success in patients with Hepatitis C.
As with most things in life - caveat emptor (buyer beware).
"I am sorry this has taken so long, but we have been waiting for replies from our liver experts. Our experts agree that Dr. Berkson's program offers nothing "new". Further, there is no peer reviewed study that suggests success in patients with Hepatitis C. "
I do appreciate the effort. Unfortunately, this creates more questions than it answers. I find the comments very vague and not very helpful.
Such as .. what do the "experts" mean by it offers nothing "new"? Would interferon be ruled out because it's not new? So what that it's not new? What kind of criteria is that? Silymarin is "old" as well. It's still considered a useful natural supplement for persons with Hep C to take. I really don't understand that comment.
What liver experts? Hepatologists? Gastroenterologists? How much experience do they have with Hep C?
How do they define success? A cure? Improved ALT/AST? Improved viral load? Improved fibrosis levels? For what duration?
WERE there any peer reviewed studies? No peer reviewed study does not suggest success OR failure. It simply means no peer reviewed studies have been done.
To me, this doesn't answer anything at all about Berkson or his protocol. I'm not trying to be critical and again, I appreciate the effort. I just don't see that it's added anything but more questions.
Your Liver experts? I suspect your experts are from a couple of big pharma companys who are in the business of selling interferon and riba. I always thought there was a connection between this board and big pharma. Thanks for making it perfectly clear.
I think you're onto something Can Do.
The subtlety may be a little too sublime.
Maybe we should convene a panel of all of the preeminent hepatologists throughout the world and let them weigh in. I think they might say precisely what Cindy said.
Says.........Maybe we should convene a panel of all of the preeminent hepatologists throughout the world and let them weigh in. I think they might say precisely what Cindy said.
I agree, i know of at least one that would but then they would be accused of being tied into to big pharma...... Hope all is well with you Mike
Talking about reading between the lines. I have been on this board for many many years and have heard of every snake oil cure from silver to every vitamin amaginable. I have heard from people like Lloyd Wright and Dr Zhang and never seen a post pulled. When I talked to Dr Berkson he said the AMA people were always telling him he was bad for business. I mean they are in business of selling drugs and livers. I don't have a clue about the berkson treatment but I do know that pulling of this post make me wonder how close the relationship between med hep and big pharma really is. I wonder how many of the posters on this board actually work for the drug companys?
"I am sorry this has taken so long, but we have been waiting for replies from our liver experts. Our experts agree that Dr. Berkson's program offers nothing "new". Further, there is no peer reviewed study that suggests success in patients with Hepatitis C. "
Regardless of accusations to the contrary, I have NO vested interest one way or another in the outcome here. However, I'm incredibly surprised that so-called thinking people are content to settle for other people thinking FOR them and being satisfied with the vagueness in the language above being applied to ANY subject matter.
Come on. What do they mean by "success in patients with Hepatitis C"? It's very open to interpretation.
Liver specialists? How many of you going into treatment would accept treatment advice or health advice from someone called a liver specialist without wanting to know what their experience was with regards to Hep C? How many people on this board have been to so-called "liver specialists" who have very outdated ideas on Hep C treatment?
Sorry. I'm not satisfied with being patted on the head and being told that someone's "liver specialists" have decided this for me on criteria that is incredibly open to interpretation .. as is obvious by people applying their own interpretations to this already based on little to no information on what criteria these "liver specialists" are using.
Who has decided anything for you? It's not like Cindy said that Santa Claus doesn't exist. Form your own opinion. She has hers. If you base your opinions and decisions based on what you read in this forum you deserve to be easily manipulated.
It seems to me that anybody who wishes to discuss the Dr. Berkson subject is free to do so privately. If this forum of "so-called thinking people" is such a disappointment, perhaps it would be a good idea to start your own discussion group. That way you can discuss whatever you wish without interference. All you need to do is assemble a group of people who wish to talk about it and you can have a ball. I recommend that you set up a google group.
I think we can discuss it right now right here. Who's stopping us? We're free.
I have a remedy, the details of which I am going to be posting very soon - a special enema treatment which gets every trace of HCV right out of you - and in less than 6 bags - by a very sensitive PCR, of course. You betcha! Watch for my studies. Watch out big pharma too.
You miss the point. If you don't like a post don't get involved with it. Why do you feel the need to be a part of it? If all you want to do is talk interferon then stay with those posts. I would never go to a interferon post and throw my neg response, But thats me.
Thanks so much for the suggestion. How about taking your own advice. If you don't like my posts, don't respond to them. I can decide where and what to post without reference to you or to any other person so wholly unconnected to me.
This, however, is not your thread. Your thread has been taken down, for the reasons stated by MedHelp. I have comments to make on this thread and you have addressed your responses to me. As you dislike my responses, I recommend that you take your own advice and "don't get involved."
We all agreed to abide by the decision that MH and their experts made. If you presume to know more than the experts then are incorrect and are just being argumentative for certain.
Start a whole forum to spread the news of Mr. Berkson if you would like - but we did agree here to listen to the experts.
Big pharma is not the enemy, hcv is. Inteferon is a cure, not an enemy. Bless the big pharma for finding that cure and for doing trials and upping the odds on beating this disease constantly.
And damn anyone who makes things up without proof just to make a buck or a name for themself who take innocent people and mess with their lives by tricking them into thinking that lima bean enema's will cure you.
Again to reiterate - no proof = does nothing proven = waste of money = read between the lines and stop being a wise guy, it's not funny and this was what we ALL agreed to.
You were involved in the original thread. Whats the difference? You wouldn't be one of those people involved with the drug companys are you? Strange to me how someone without a vested intrest would want to be so involed with this discussion.
As most of us here willing to accept MH's side of the equation agree that this guy has proven to do NOTHING to cure HCV but many of us have done interferon (SOC) or a trial (PI) and been cured - we are all cured we are all involved with the drug companies to some extent.
I'm involved with "big pharma" to the extent that I have been cured of both HCV and cancer due to courses of treatment made available by pharmaceutical companies. Strange to me how you bristle at the suggestion that the proponents of the Dr. Berkson clinic may have a financial interest, yet you accuse me of being involved with drug companies. If you don't want to take interferon, by all means don't take it. I chose my courses of treatment for my own reasons, and you should do likewise.
In any case, you are posting on a public forum, where others are free to air their opinions as well. As you are so hostile to anybody who disagrees with you I repeat my earlier suggestion. Start a group and discuss anything you like in private with like minded people.
As always you speak for the cured and never for the uncured. For the most part those people leave the forum to never be heard from again. Those are the people who the berkson or Dr Weil or Dr Zhang threads are intended for. I am happy for all that have cleared using TX but for those who need other options I hope they all continue to look. Its been one month since my visit with DR Berkson and I will give it a few more weeks then get blood work and report the before and after results. Anyone not interested in my thread on this please do not open it.
Yep. The old my way or the highway. I am not hostile with anyone, nor am I defending anyone. Everyone has to make their own choices and just becaause I keep an open mind and try to look at all points of view does not mean i am defending anyone.
Well Upbeat I'm not anti big pharma because I do realize that you are not cured but do not think that they are evil. I almost did not hit SVR but would have been appreciative for the others who have and would still not have wasted my money on false tonics or potions or men who claimed false things.
I would have waited for a trial or tried something else though as proven by medical science to work. That is the difference I do not believe in promoting false products just to make someone feel good as it is not productive in the slightest.
But then again I do use beauty products that claim to make my skin look like a 20 year old so I guess that is the same thing, but it's not hurting anybody which unproven things do.
"My way or the highway"? Where do you get that? It was MedHelp (not me) that took down your thread, and MedHelp that checked into the Berkson program and made decisions based on that investigation. So get your indignation off me. I suggest what any thinking person would suggest - those who wish to discuss Berkson should do so however they can. If that means starting a discussion group, isn't that a better alternative than to keep railing against the editorial decisions of MedHelp? In my view, that is what an intelligent person would do.
I don't care what you discuss or where you discuss it. If you are going to post in a public forum (of which I am a member) your discussion will necessarily be open to comment from other members. As you dislike getting comments from those who disagree with you, your alternative is to create a group that excludes those people. As long as you post on MedHelp, I will comment on your posts or not, as I see fit.
If I had tried SOC and failed to clear I expect I would be disappointed and discouraged, however I doubt my disappointment would embrace the resentment of "big pharma" that is evident in your remarks. And I certainly would not cast aspersions on those who cleared and are grateful for their SVR. Accusing me and other proponents of SOC of "being involved with drug companies" or "having a vested interest" certainly sounds hostile to me.
That being said, any time "big pharma" wishes to retain my services, I will gladly discuss the matter.
I think I will be looking at the platelet numbers more than any other. Even if the ALT and AST were to show great improvement that might show a reduction in inflamation but as we all know there are a lot of people with normal alt and ast with liver damage. I will list all of the before and after numbers however they come out. My approach to the hep c virus is somewhat different than most. I have known for a long time of the virus and decided to deal with it with using life style changes. I just received my first Social Security check and my normal daily activity is after breakfest is an hour on the treadmill followed by at least a couple of days a week doing a 8 mile hike in the foothills where I live. A couple of weeks ago I particapated in the Tour De Tucson which is 109 mile bike ride around Tucson. I suppose I am not your normal hepper. I find it strange to have people attack my approch.
Exercise is good! Wow, 109 miles! I put on 100 miles on my bike when I was on treatment, but it took a month to do it. I enjoy exercising now, but when I go on treatment next month, all my exercise will be from jumping to conclusions. I don’t think anyone wants to attack you personally about your choice of approach. They/I hate to see anyone profiting from taking advantage of sick people by offering an easy fix. Especially when some of us that went through a rough treatment sometimes several times and still relapse. We know how tough hcv is. As they say, extraordinary claims need extraordinary proof.
I don't mean to be rude but I thought this subject and it's propaganda was over, as deleted and decided by MH. I really don't want to waste time rehashing the same old tired arguments over and over when people come here for real help and real answers and not just guesswork on someone's part.
I totally agree. Who knows if this guys claims are real or not. The proof for me will be in a few weeks. I could have just stayed with my normal life style. I feel great and I doubt many on this board could spend a day in my shoes and still be standing at the end. Even though I believe I will die with the virus and not because of it, I would also like the virus gone. For me its the risk vs reward. Should I risk a treatment that more than likely would not work for me? ( Age, Length of infection, geno type, viral load . gender and even liver condition ) and could do more damage than good. I am astounded by how much flack I receive on this board. I have never said people shouldn't do TX. All I have said is it is a personal choice. I wish you well on your next round and hope it works.
To be honest I suspect Berkson has enough patients as it is and don´t need to promote him self at this forum.( sad that is if hes not honest or overcharges)
Many things with him are suspicious, but i think we can handle him and others alike ourselves.
Why MH chosed to delete the thread I still can´t figure out.
Really like to know where this fit in with the termes of use.
Has there been new rules created why couldn´t the thread stand.
I really have had enough of censorship and i even thought MH has started to understand we are many fed up with that.( so why invent new criterias for censorship)
And as Goof so cleverly pointed out, are we now to believe that every other protocol (doc) suggested here has solid values and has peer reviewed studies that suggests success in patients with Hepatitis C.
What agreement is it NYgirl are talking about I for sure hasn´t agreed to anything!!
Just sitting here in Town Suites typing away.
The comprehensive metabolic panel when ordered thru Dr. Berkson (you pay the office)
costs only $20 ! That`s what most copays are.
Even better you can draw blood end of day get results next morning.
Much more of a hassle for me in back home.
I have other abdominal issues that are not liver related and to be sure I did a whole
bunch of tests CT scan,Ultrasound and now bloodwork.
By the way great weather 60s dry , no wind lots of sun
I was also told by you that removal of this thread had nothing to do with prohibition of alternative therapies on this forum.
You state that "Dr Berkson offers nothing new" (whatever this means) and "there is no peer reviewed study". Let me ask you again-what about threads concerning Dr Znang, Lloyd Wright, colloidal silver, homeopathic treatment? Are you going to remove them also? Or you made an exception for Dr Berkson thread?
FlGuy: "Who has decided anything for you? It's not like Cindy said that Santa Claus doesn't exist. Form your own opinion. She has hers. If you base your opinions and decisions based on what you read in this forum you deserve to be easily manipulated."
I think you have me mistaken for others here. nygirl and others certainly think MedHelp has decided for us and that we agreed to let MedHelp do our thinking for us and then turn around and THANK them for doing our thinking for us.
They certainly haven't decided for me and that's precisely the point you miss. The whole vetting process in the first place is completely unnecessary and useless since the point IS that we prefer to think and decipher for ourselves and do NOT base opinions on what we read on the forum, so why bother doing the vetting process in the first place, particularly when the result is so vague as to be utterly useless, when all along we've been saying we're quite capable of discussing it through and thinking it through for ourselves.
The RESPONSES to it, thanking them for doing it would indicate that OTHERS are allowing MedHelp to do their thinking for them by accepting this - we agreed to this process? Are you kidding me? We AGREED to let MedHelp think for us? This whole thread has been an utter protest trying to make the point that we don't NEED or WANT MedHelp to think for us. The whole exercise of them doing this, while well-intentioned, was misguided at best and was insulting and pointless at worst. The point was that this didn't need to be vetted by MedHelp at all and I'm surprised at the people that made such a big noise about censorship on this forum who actually now support MedHelp deciding what we can and cannot talk about and deciding for us what is worth talking about as if we are incapable of deciphering things for ourselves. Interesting also to see people who were raging against censorship suggesting that some discussions should be held in private when some members don't like the subject matter, which is a censorship of it's own. I skim past a number of threads that are of no interest to me but plenty of interest to other people. Should they take them offline because it's not interesting or relevant to ME?
This thread wasn't about Berkson - the other one was. This one is primarily about the right of people to discuss whatever is relevant to THEM without having others dictate to them what they can discuss. Frankly, I really don't get what anyone is threatened about, one way or another. God help the person who's late stage liver damage, has relapsed and is looking for alternatives and they unsuspectingly stumble across this forum and end up asking a question about something and get branded a troll, a disciple, a shill .. and they're simply on their own journey in their own way to find answers.
With regards to Berkson, I was going over in my head all the things I've learned by virtue of the discussion happening. I would hazard to say that ALL of us know more about him than we did before - what his stand is on cure, how many papers he's published, what his protocol is, what the cost of his treatments are, WHAT his treatments are, whether he was a keynote speaker at the NIH or not ... yadda, yadda, yadda.
As for his protocol....I've learned that other people on this forum take ALA - not even something I had ever HEARD of before a discussion on Berkson came up. I have been reading that it's found to be beneficial for auto-immune diseases, have started reading up on LDN, ALA and have been bookmarking various studies on non-pharmaceuticals, have discovered that there are a group of Hep C patients who go to this doctor who have noticed improvements in their situation -
In the middle of all the discussion on whether we should have a discussion, we've been discussing it anyway and for me personally, if someone asked me about Berkson I'd say that I disagree very strongly with his view on cure and that it's almost downright dangerous depending on how he presents it but his protocol seems to be worth some investigation at least. That's where I'm at on that and I for one would like to continue discussing the PROTOCOL in much the same way I engage in discussions on other non-Hep C forum to pull in the collective wisdom of all to assist in forming an opinion of my own.
I find it kind of funny that it's been suggested to me that I'm expected to provide definitive proof that his protocol works before I should even talk about it. I bought that for awhile. However the whole point in discussing it or anything else on a forum is to have everybody throw in their collective knowledge, insights and opinions and it helps to form the big picture.
So here's a novel thought. All those that would seek to censor the topic by suggesting that this is unpalatable to them and that they don't want to discuss it anymore and would like to impose censorship on those who feel differently - simply move along to other things and leave it to those who want to discuss. Or go visit other threads and tell them that they should take it offline because a small group of people on the forum have decided that they should be able to dictate what is relevant and what people should be allowed to discuss.
On a side note, I sat down with a fellow from my Hep C support group this evening. Stage 4, he just relapsed 2nd time around. He started out double-dosing for the first 12 weeks. He was UND at 12 weeks. Now he's relapsed. We talked about all kinds of things - upcoming drug trials and all the supplements he's taking and we talked about other supplements and alternatives. He doesn't have many at this point. He didn't seem too comforted by the fact that there are new drugs coming onstream soon. Whatever he wanted to talk about, we talked about. Whatever he needed to talk about pertaining to his own situation, we talked about. And that's precisely the point.
This seems to be a pi$$ing contest now more than anything.
A low viral load is more likely to respond to SOC treatment so, in that respect, a low VL is a good thing - if you're going to treat with SOC, that is.
However VL doesn't appear to be indicative of liver damage.
From: Clinical Care Options
"In contrast to the correlations between the magnitude of HIV or hepatitis B virus replication and risk of clinical disease, the level of HCV replication has never correlated with fibrosis progression or ALT levels. The important parameter in hepatitis C is the presence or absence of viral replication—not the magnitude."
From: Symptomatic and pathophysiologic predictors of hepatitis C virus progression in pediatric patients.
"There was a significant inverse relationship between viral load and symptoms (chi = 4.75, P = 0.03). Patients with low viral load (<2 million copies) were 5 times more likely to have symptoms than those with high viral loads (P = 0.03)."
From: Clinical Care Options:
"Management of HCV-Associated Fibrosis"
"While viral factors such as HCV genotype and viral load influence the likelihood of response to interferon therapy, viral factors do not correlate with fibrosis progression. A person with a high viral load and HCV genotype 1 may have very rapid or very slow
We've been over this issue before. These are article I saved but I know there are a lot more out there which state the same thing. VL does not correlate with progression.
What is your ALT, AST and platelet count, by the way?
To Mike...I vaguely recall that there's a direct association between levels of viral load and transmission rates of the virus, that it's not exclusively about viral load significance for starting SOC...can't check that right now but could you? That's kind of important, I think.
Accepting that the liver itself isn't histologically affected by high viral load, which is what seems to be conclusive out there in studyland, I still wonder if something else isn't affected adversely by high serum titers, something not understood or studied to date, maybe fatigue levels or something. Do millions of virons just pedal around and have zero impact on absolutely nothing else just because it has no impact on liver histology?
That second study you cited concerns pediatric patients, so don't know if it applies to members here.
That is why I posted the title so no one would have to look it up to see that it was about a pediatric population (though the population did extend to 18 or 19 years of age). I found it counter-intuitive that, while Viral load is not associated with histology, here, in a pediatric cohort, it seemed to be associated with symptoms (whatever "symptoms" means).
Regardless, it is crystal clear that VL is not associated with liver histology.
Now, could it possibly be associated with something else? Well, I suppose that's possible. Maybe we could sit around and imagine some intriguing scenarios. That would be fun. My guess is that, in light of the fact that this disease has been studied intensely for a while, some studies might make mention of an association with VL. I think something would have surfaced by now if it was consistently seen in high or low viral loads. That's just my opinion but it seems reasonable.
My opinion is that it is our immune response to the virus which damages the liver - for the most part. Recently there has been evidence that the virus is, in and of itself, cytopathic so apparently some damage is due directly to the virus. The studies still acknowledge that damage is done indirectly though immune mediated response. So, that's how I see the virus - it's either there or it isn't and, if it is, then regardless of VL you are at risk for liver damage as well as the diseases associated with HCV.
My main question that I hoped you could answer was whether there's anything conclusive in peer-reviewed studies about high viral load being associated with greater risk of transmission.
If there are such studies, that seems to broaden the importance of viral load and the value of having a low one. I had tended to think of its significance only in terms of beginning SOC but do recollect someone here mentioning this second aspect.
I have read that a high viral load at the time of delivery is associated with a greater risk of perinatal transmission of HCV.
I also believe that it has been reported (perhaps as yet not conclusive) that infection due to blood transfusion is associated with a more rapid disease progression. That might have some VL implication but I really don't know about that.
I think it's possible that a higher viral load could increase transmission risk in some circumstances but I have no support for that premise.
Enhanced Ability of Regulatory T Cells in Chronic Hepatitis C Patients with Persistently Normal Alanine Aminotransferase Levels than Those with Active Hepatitis
In hepatitis C virus (HCV) infection, the Th1-type immune response is involved in liver injury. A predominance of immunosuppressive regulatory T cells (Treg) is hypothesized in patients with persistently normal alanine aminotransferase (PNALT). Our aim was to clarify the role of Treg in the pathogenesis of PNALT. Fifteen chronically HCV-infected patients with PNALT, 21 with elevated ALT (CH) and 19 healthy subjects (HS) were enrolled. We determined naturally-occurring Treg (N-Treg) as CD4+CD25high+FOXP3+ T cells. The expression of FOXP3 and CTLA4 in CD4+CD25high+ cells was quantified by real-time reverse transcriptase-polymerase chain reaction. Bulk or CD25-depleted CD4+ T cells cultured with HCV-NS5 loaded dendritic cells were assayed for their proliferation and cytokine release. We examined CD127–CD25–FOXP3+ cells as distinct subsets other than CD25+ N-Treg. The frequencies of N-Treg in patients were significantly higher than those in HS. The FOXP3 and CTLA4 transcripts were higher in PNALT than those in CH. The depletion of CD25+ cells enhanced HCV-specific T cell responses, showing that co-existing CD25+ cells are suppressive. Such inhibitory capacity was more potent in PNALT. The frequency of CD4+CD127–CD25–FOXP3+ cells was higher in CH than those in PNALT. Treg are more abundant in HCV-infected patients, and their suppressor ability is more potent in patients with PNALT than in those with active hepatitis.
Management of Chronic Hepatitis C Patients Who have Relapsed or Not Responded to Pegylated Interferon Alfa Plus Ribavirin
D. T. Dieterich; M. Rizzetto; M. P. Manns
Posted: 12/04/2009; J Viral Hepat. 2009;
"...Continuous suppression of HCV RNA of this magnitude during maintenance therapy did not significantly reduce the incidence of morbidity and mortality. These data show that low-dose maintenance therapy cannot be recommended for nonresponders, but suggest that profound suppression of HCV RNA during initial re-treatment produces a lasting benefit even in the absence of an SVR..."
I found this article and wanted to share it. It is the only evidence I've seen that might suggest a correlation between viral load and disease progression. I don't find it convincing by any means but I did find it interesting.
You really have to read the entire article and even then it is hard to fully comprehend. The basic thrust is that our immune system causes the damage but the pathways and mechanisms by which that happens are hard for a layman to understand or follow. The underlying principle becomes clear, however, when you read the article.
Now, I have always liked normal ALT & AST. A snapshot doesn't say much but persistently elevated LFTs are usually not a good indicator of liver health. Not always perhaps but more frequently than not. And persistently normal LFTs are usually associated with a lesser degree of liver damage and is discussed in the article I posted entitled:
Enhanced Ability of Regulatory T Cells in Chronic Hepatitis C Patients with Persistently Normal Alanine Aminotransferase Levels than Those with Active Hepatitis
Wow thats great. It will be intresting to see what my numbers are. I havn't checked yet. When I went there they were AST 135 ALT 203 . I really want to see my Platelets number. Are you going to do a Viral Load by PCR? I sure hope they don't pull this thread. I hope you have as intresting group in the treatment room as I had. Did you notice the earlier thread on Silmmarin?
I never asked him that question. I would guess all blood numbers normal and a super low viral load. But its only a guess. Bali05 will talk to him soon lets ask her to ask him. Bali05 could you do that for us? It is a good question and worth an answer.
Yeah some very interesting people in that treatment room.
By the way also got CBC today all normal , platelets also going back up.
I set it up so when I get back to NYC my GP will call Dr. Berkson and get
instructions for me to continue Berkson IV protocoll when needed at home.
Prefer to come down here though.Great weather right now.
Viral load will follow according to my protocoll.
As always , I keep you posted
"The proof is in the pudding" /and it comes in different flavors.
"Strange that you hadn't heard of ALA before. It was included in our endless supplement discussions. Several of us here were taking it. It was also on Gauf's list.
I took it everyday since before starting tx until 3 months post. "
Not so strange.
I didn't participate in your endless supplement discussions. I'm sure if you went back through those threads you would find I make little to no appearance there. I also didn't have a reason to study Gauf's list at the time either - I've read it since. One of the first things I did after being diagnosed for Hep C was to search out CAM therapies however not so much for me but for a friend's mom who had kidney disease and Hep C and couldn't do treatment. Once that was done, my attention turned to treatment-related pursuits. Supplements were not relevant to my situation at the time as generally, no supplements are taken on treatment and I spent little time on those threads and much more time on riba threads and the like. I headed into treatment and a clinical drug trial and consumed myself with treatment-related research. During treatment, I started looking into supplements to boost my immune system out of sheer necessity and a bit of desperation - Ev and Gauf were very helpful there.
I noted those supplement threads but did not have reason to engage and I needed to focus my energies elsewhere. I'm sure if the treatment had failed, I would have then turned my attention to supplements as a means of curbing any progression of liver damage. Beyond that, I've hardly ever touched a supplement my entire life other than mega doses of C when I got the occasional sinus cold. I've had practically no health issues whatsoever until diagnosed with Hep C in 2006.
Strange to you, perhaps, as one who has taken supplements for years. I've hardly touched them ever. And now, I suppose, my reason for engaging is the same as when I first found out about Hep C. My interest is not so much for me but with regards to other people in my life who don't have treatment as an option right now.
The proof is in the puddingzzzzz (plural), and then only when you can do it in a way and number that controls the other variables so you know it's the pudding and not the cook or the kitchen! Otherwise there is no proof.
And thus the native hue of Dr. B's cooking
Is sicklied o'er with the pale cast of artificial flavor,
And enterprises of great pitch and moment
With this regard their currents turn awry
And lose the name of pudding!
I never thought of asking, I will make an effort to find out the answer. I am hoping that Bali05 will check in after his next vist with Dr Berkson. On a side note here, has everyone noticed how after this thread was removed it has now grown even bigger. The thing that has surprised me the most is the amount of personal messages I have received from people who no longer post on this board. The reason they no loner post is because they saw how my thread was attacked by a few who try to control the board. I myself feel its a loss as these people mostly non responders or relapsers have a great deal to contribute.
I got a lot of messages too - from people who are no longer posting on the board because it is full of this Berkson stuff. I tell them to keep an open mind and a very sharp eye out because eventually someone just might have something to offer that we can really evaluate - aside from the anecdotal evidence provided so far.
Moles who would that be??
Hope you dont believe its people who are resurching and that are emotionally engaged in people treating here
People like Nygirl, mikesimon,,jd,andiamo,child24angel, are they the people you mean?
They have been on this board for years supporting people making efforts by investigating and posting numerous af articles and studies or by sending a lot of comfort and hugs.
Not to mention their own hardship experiences with treating or kindreds treating.
I wonder if you or they who supect this good people hasn´t been around here enough to even come up with the thought.
If it really are some of this people you think are mulves I most say its out of the question at least it is in my mind and heart.
I know what the meds can do to a persons mind and even if some who are on the meds are suspicious I dare say there is lots and lots of people who thank God for each and everyone I have mentioned above.
Berkson wasn´t a keynote speaker at the NIH thx to andiamo we found that out
we also learned due to Bill1028s telephone call how expensive dr Bs treatment is ( how come you did not informed us about that)?
I most say if the only people writing on the thread would have been those who are pro drB , it would very much had been mostly vage and some missleading info we would have gotten.
Why don´t you thank Andiamo, Bill and mikesimon for what they have done on this thread instead of suspect them of hidden unclean motives.
That said upbeat, I my self are trying to have an open mind and are glad for all efforts that are maid to give us who suffers both from the disease and the meds as much opportunities as possible.
Therefore I will thank you and also Mhudnall for what you have shared with us.
and I don´t for one minute suspect neither of you working for drB.
I that is fortunate enough to have got SVR after two treatments( i´m one year post). I have have felt so weird until some weeks ago so scary weird that I almost regretted I took the cure.
My brain came back to me two weeks ago and now I don´t regrett treating anymore instead i feel blessed.
Thx to mhudnall I found LDN been on that for three months started with 4.5g but since a month only taking 3g think that is my dose.
I don´t know if its the LDN that has done the trick or its just time or prayers from two pastors that I have recived.
The meds only cost me 4$ a month and I really think its harmless.( so cheap due to mixing it my self from naltrexone pills)
I will continue to take it also gonna try ala , R.ala that is which i really belive can benefit me so thx again for putting me on those tracks.
Good luck upbeat i really wish you and everyone else who have chosen not or can not
do soc the very best keep up the good mood!!