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censorship succs

Feb 04, 2011 - 21 comments

Sheesh medhelp, I fail to see the point of censorship.

Even if someone brings in an idea we don't agree with, since when are we such children that we cannot correct, instruct, debunk, or even, gasp, explore a new idea.

The verdict on alternatives curing is in, they don't, but the verdict at least for HIV people is that viral reduction equals longer life. 30 years is the average time from HIV to full blown AIDS now, whereas it used to be less than 5 years from being diagnosed.  This is all due to keeping the VL very low.

Obviously adjuncts have so far proved incapable of cure, but which of you who have not been able to REACH a cure using SOC would not gladly trade a viral load of 2 million for 10 thousand??

It's not just about inflammation, although that's somewhat true, but the virus also changes the way we metabolize, the whole lipid process is thrown off, as is the whole endocrine process, and God only knows what else.
I've been saying 50% of us have endocrine dysfunction thanks to this virus and provided the studies...and lately the stuff I've been reading on lipids is equally frightening...not just what happens to your belly fat and the hump on the back of your neck, but all the other parts of the body that are starved for enough lipids because this virus somehow reroutes them to storage. It goes on and on.

I just wish sometimes we could carry on conversations without the brain police deciding for us what is worthy of discussion.

LAst time I looked the average age in here was 60, not 6!!!

One reason I don't come in here as much anymore is because of the censorship.
I suppose this post will be censored for me saying this.

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545538 tn?1295995617
by Kathy73, Feb 05, 2011
I've enjoyed reading your postings for as long as I've been on this forum. Your independent way of thinking and posting encourages me to think outside of the box, something that makes other uncomfortable. Please don't take your thoughts and "what ifs" away.
Kathy

233616 tn?1312790796
by merryBe, Feb 05, 2011
thanks Kathy, it's good to hear your words. I'm having a good conversation with a moderator right now, so maybe it can be productive.
I'd like to see things return to the pre 2009 modus operandi where only the most egregious things were censored.  Of course, it depends on medhelp recognizing who the whiners are, and when information is being debunked vs. personal attacks. Personally I think we policed our own well enough.

When whole threads started disappearing just because someone didn't like them, or when certain members were clipped out of thread completely, I lost my respect for the moderators. When doctors and nurses started leaving the board because members were so suspicious by nature, it showed lack of discernment on who really needed censorship. However I realize that members who complain a lot are often the least informed and the most in need of psychiatric help, not medhelp ; ).

In any event, here's to free speech, may it live long and prosper!!

545538 tn?1295995617
by Kathy73, Feb 05, 2011
Some people only endorse "free speech" as long as it coincides with their thoughts.

233616 tn?1312790796
by merryBe, Feb 05, 2011
Boy you got that right!!

92903 tn?1309908311
by GoofyDad, Feb 06, 2011
Amen!

1523804 tn?1316564509
by murariji, Feb 06, 2011

I am curious to know what sort of stuff disappears or gets censored and why.
In my experience there's a price for everything so even speech isn't free. Uncensored speech is worth discussing, but there should be parameters. lol
Where do you read about lipids and endocrine dysfunction? Is it all part of the Hep C can of worms?
I am kinda new and trying to understand what's going on.
I am very impressed with your ALT altering experiences. Where did you learn to do all that? Certainly not abridging Dickens for Wal-Mart.
Lastly.........any chance you could get me a job connected with writing??

317787 tn?1473362051
by Dee1956, Feb 13, 2011
Merrybe, I am with you, I have seen changes since I joined in 2007.
I want to see what everyone thinks, I can not treat so want to know about any and all nutritional advice I can get.  After tx 2 years ago  I was finally starting to feel close to my normal self, then I made the mistake of getting new carpet and paint, now I feel like I am on tx again, well. that may be an exaggeration however I am trying alot of nutritional supplements herbs that I have read about on here and would hate it if this site turned into a "treatment only" place to visit.  It would leave many of us out of the loop and there are not a lot of sites out there where we can all meet and compare notes
Thank God for people like you and HR and Evangline, Gauf and so many others I can't remember right now.  I love Goofy Dad, he always makes me laugh, there is Mike 716, DD and Magnum and everyone else who is brave enough to post.  Please know there are many people reading your posts with great interest.  Even if they do not post they are out there
God Bless you
D

Avatar universal
by evangelin, Feb 15, 2011
Merrybe,
You have introduced many interesting thoughts to the forum and I totally appreciate your contributions.  Something has gone way wrong around here and I hope some day it will be right again because for now, I still don't have the heart to post.  I just want you to feel you have support for your out-of-the-box thinking from the out-of-the-box TX responders. I don't post anymore but when I see the name Merry-be...I read. :>)
Ev

233616 tn?1312790796
by merryBe, Feb 17, 2011
Dee and Evangelin, thank you both for your support. I've gotten similar PM's so I know it's a topic that needs to see the light of day. I'm in discourse with Medhelp to see if we can keep the censorship to a minimum.

On that note I also wrote the membership on a current thread this little piece:

As much as I appreciate folks in here, I have to say that sometimes we are a little knee jerky in our responses.

If I was bringing in info telling you to eat your toe cheese from some quack site I could see the reactions.
However, if the information has peer review, is done within the medical community and using scientific methodology then it seems to me it should receive a fair viewing and hearing before being pronouced as heretical. (I did ask a biologist to review the methodolgy BTW, as I did not assume any of you would take my word for it, and he did approve.)

Fair implys that we study the information for ourselves before jumping to the conclusion that it has no merit. It also implies if we don't understand a topic we don't assume it must be horsestuff. It's OK not to understand a topic, but not ok to diss it when you don't.

Being dismissive on a personal level which also has been employed here doesn't help ones case the next time YOU want to make a salient point, I'd rather take the points of others seriously but it becomes more difficult to take seriously those who regularly accuse others of being crazy and the like.
Toning down such verbiage will assure one of future mutual respect, but continual belittlement only diminishes the verbal abuser, in everyones eyes, and it compromises the integrity of the forum..

I have been helped by many in here, and had my eyes opened by members both with a without medical training; intelligent members who take seriously their responsibility towards the sciences and towards each other.
What I have learned from picking the brains of those who actually read and understand what they read has far exceeded what I could have hoped for, and I will be forever grateful to all who have labored to keep abreast of and bone up on this dread disease.
Without you all, I'm sure I would be far behind the curve and hopefully that is not the case entirely any longer. I'm far from knowledgable compared to some, but hopefully the years spent choking on medical papers is starting to pay off somewhat.

Nevertheless we need to remind ourselves of what happens when folks are not given a fair hearing.
First of all patients are pushed away...they run from here, or they write to say that they only feel comfortable with a couple people on the board. That's sad.
Secondly there have been more than a few professionals who have moved on due to some of the knee jerk reactions in here. More than a few. You older members know the truth of this.
We are one of the very few places that do discuss such things as advances, treatment options and adjuncts, so it just makes no sense to stifle research or thoughts that may help when we really are not familiar with a topic, yet I've seen it happen many times, often to people with far more knowledge than those members who do the most questioning.

Think of whom we have had come in here and try to educate us, microbiologists, chemists, geneticists, radiologists, a dialysis specialist, a diebetic specialist, one of the leading hcv researchers in the world, the list goes on and on.

My thinking is that we need to engage, cherish and not accuse the educated amongst us, the better to learn more. The better to keep them here!!
Also I think the time has come to try and get our minds around WHY something might not work BEFORE we try to debunk it and then, if we must to do so with proofs.

I would rather see us debunk something, like for instance when the "OZONE" lady came in
this month we were able to dissuade her, than to see a thread cencored where we try to debunk we know not what (because the link was bleeped out) and then members tried to debunk it anyway without even knowing of what they spoke.
Doesn't that make us just look foolish and reactionary?? Trying to debunk we know not what only makes it apparent that reactionism has reached a crecendo at times, and it serves no purpose except to make us look like an unimformed herd if we throw mud at something without even knowing what it is we are throwing mud at.

I very much appreciated Willings approach which was to study the info first, and then say why it may or may not have had merit.
Therefore I'll give him the best answer on this thread, because he read the studies I gave, and then discussed, and THAT is what will most help other people which is the whole point.

I could just have easily have kept all this to myself, I've done that a lot this year...or brought it to the few board members who are receptive to new ideas, but because this might help so many more folks to get well I felt it was important to bring it in here to everyone....knowing I might take some heat...and ya'all did not disappoint on that note.

Nevertheless, in my view if this helps even a few folks it was worth the grief.

mb


317787 tn?1473362051
by Dee1956, Feb 17, 2011
MB, EV, All
Thank you all for your comments, I feel the same way and I am sure there are others.  Since I relapsed in 2009 I have been trying frantically to find something that would help the damage that I believe the tx did to me.
The Roche R1626 plus the SOC caused me damage and I don't really know which it is.  I am tired of hearing that it is the Hep C.  If it were the Hep C I think I would have had some symptoms before tx which I did not.  I appreciate hearing everyone's information.  I have learned a lot on this site and I appreciate it very much
Dee

Avatar universal
by child24angel, Feb 17, 2011
MB , my censors are going off......

It usually takes 10 years or more for an HIV infection to turn into AIDS.  However, anti-HIV medications can radically interfere with HIV’s destruction of the immune system and lengthen a person’s life expectancy.  With proper treatment, some people now living with HIV may never develop AIDS and can live a normal life span.  Studies suggest that starting treatment early in the course of infection can significantly improve long-term treatment success.



Avatar universal
by child24angel, Feb 17, 2011
Ergo, no alternative treatment.

Antiretroviral drugs are used to treat the human immunodeficiency virus (HIV). Patients take antiretrovirals in "combination therapy," which typically involves a 3- or 4-drug combination of nucleoside analogues, non-nucleoside reverse transcriptase inhibitors, and protease inhibitors. In the right combination, and when taken according to schedule, antiretrovirals can slow down the development of AIDS.

Antiretroviral therapy helps people who are infected with HIV to live longer, healthier lives. Although AIDS remains an epidemic in many parts of the world, the death rate from the disease has fallen drastically in the United States and other industrialized nations where people have access to affordable antiretroviral drugs.

Antiretrovirals, when taken in the right combination and according to schedule, can result in immune reconstitution, restore health, and prevent the development of AIDS and AIDS related conditions. As of January 2008, there are 32 antiretrovirals approved by the U.S. Food and Drug Administration (FDA).



338734 tn?1377163768
by IAmTheWalrus, Feb 17, 2011
Censorship is obscene!

92903 tn?1309908311
by GoofyDad, Feb 18, 2011
It's hard to define it, but I know it when I don't see it.

233616 tn?1312790796
by merryBe, Feb 18, 2011
child4angel, yes that was my point but you weren't here for the thread where all this began. What happened was that we were discussing why viral load could be important, amongst many other things. What we need to admit is that hcv also effects the immune system. It's not the T-cells to the same degree, it's the macrophages, the endocrine etc. It makes us suseptible to a host of different diseases, not the exact same ones as HIV, but diseases none the less.

Of course we know inflammation is the "big factor" in the real world of fibrosis advancement, but there are cascades, chemical cascades that cause the inflammation. Cascades which the hcv sets off, puts in motion. The fact that it's not a direct correlation early in the disease doesn't mean that over time having millions vs. hundreds of virons pr. ml doesn't take a cummulative toll. Ah, but were the VL to be kept low, as HIV patients can attest to, it can extend life. Would that this had been possible for your sweet son.
Even hemophilia, or folks with other things where tx was contraindicated might fair far better.

I just don't get why things like this cannot at least be discussed. Of course, we would like to see a cure, but for people who could not treat, either because their blood wouldn't hold up, or some mental issue, or heart disease, or what ever, I think maintanence, were a good antiviral combo to be found for hcv, would make a lot of sense. It might add 20 or 30 years to a life because it is the constant high viral load that finally wears out all the other systems, the lymphatic system, the endocrine system, etc...and the constant way it forces us to produce too much insulin, and down regulate and upregulates so many of the body's chemical signals is what lead to all the inflammation. Ergo I think we should discuss new ideas.
However as you know any ideas of how to keep viral load lower, or even the idea itself have not been given a fair hearing in this forum, or any hearing really. And most of the time adjuncts are dismissed out of hand, even ones that are not a scam, or that are being brought up at the ASSLD due to their attributes are not treated with due deferrence.

In my mind it shouldn't matter what the origin, whether it is made in a test tube, or the crucible of the earth and nature, a molecule that helps is a molecule that helps and should bless the day we discover anything that truly does help!!

It's just too bad no one seems to understand the chemistry very well in here. Hint: what causes the inflammation is the virus and the longer one has a high viral load the more likely one will see damage.

It's really amazing when you think of it, one liver cell does hundreds of thousands of tasks each day. They are like the most intelligent little cells we could possibly imagine, they pull off chemical marvels the likes of which no chemist with a trillion, billion, quadzillion dollars could pull off. Yet that cell cannot preform the same when it is packed full of foreign matter.
Like a factory that works fine with it's hundred guys working at their stations cannot work the same if you try to fit ten thousand foreigners into their work space...they won't be able to move or function. Same with a liver cell, it can't do the job. And the virus itself is effecting the kupffer cells in a hundred ways they now know of and that's just the tip of the iceberg...for every chemical process the virus changes that they know of, there's ten they don't know of yet...Enter inflammation. You cannot have a virus changing how everything is processed and think that the inflammation isn't related to all that.
That's the best analogy I can think of, that's why I think that viral reduction should be tried on those unable to successfully treat. That's what they do for HCV people, and the same could be done for some of us.

I remember one summer we went fishing on a river known for it's salmon runs. In an average year you could wade across the river, and see salmon swimming up here an there as you went. Yet this one year things changed...and we could not walk across the river because it was so full of salmon you literally could not take a step without crunching on them...it was teaming, alive, and the river was transformed by their presense. I think it fair to say that no one can be making a trillion copies of this virus every week and not have it effecting things. it does explode the spleen, this level of virus...we can observe that, and logic and what we know of science dictates that we admit it's the heavy viral load that had pushed the lymph system beyond endurance, but next door we will look at the liver and say the viral load has nothing to do with fibrosis, only inflammation causes that...well yes inflammation does cause that, but it's the virus CAUSING the inflammation. It's the virus causing the fibrosis, the increased pressure, the bleeding the inability to deal with toxins, the inflammation finally, that was my point. Not sure I made it as well on the thread as just now. Thanks for the question.
mb

BTW, was just reading this week that there's a gene sequence on HCV geno 3 that makes that type much more suseptible to fatty liver...something about phenalalanine being wher tyrosine should be on position 168, or 164...can't remember now...but the more they are studying the interactions and genetics the more frightening hcv becomes so I rarely bring up most of what I read in that regard.

Avatar universal
by child24angel, Feb 18, 2011
I find it troublesome and hurtful,  you can use my son to make your point.
The verdict is still out on the high viral load and liver damage etc.  in HCV
Does a low viral load mean the patient will live longer...NO.
There are many other things to consider.

Since you brought it up..
My son had a very low viral load..all the way till the end.



233616 tn?1312790796
by merryBe, Feb 18, 2011
Gee Elaine, it wasn't to hurt you that I brought Nick up at all. I've been reading how hcv breaks us down lately and he has been on my mind as a result. I'd been reading on how hcv can thin the cell walls, how it weakens blood cell walls as well as liver cell walls by secreting substances that tenderize the tissue and make the membranes break down.

The only reason I brought him up was because it's the folks who can not treat I feel the worst for. And he was amongst them, and since I was speaking to you I thought you might share the sentiment, that is, It was to say folks who can not treat currently have no options and that needs to change, why, well most assuredly because there are innocent children who should have options and don't. Nick had no options. and with his condition the damage was accelerated even if his VL wasn't as high.

Obviously with hemophilia his cells suffered sepage much easier than most Just from that condition, sepage effects all sooner or later when we have hcv because of not just too many toxins, but because it down regulates the substances that keep cell walls from bursting, so sooner or later that's what happens to us all, but it really can accelerate with certain conditions, including hemophilia. Viron damage is greatest when the tensile strength of blood and/or cells is weaker to start with.

This virus actually tries to change body chemistry and weaken the cell structure in order to penetrate, that's why it has been observed moving from one tender liver cell to another, it seems able to influence the cell walls and chemically weaken them, then move to another liver cell without even going into the blood. Not in all cases mind you, it doesn't seem able to do it well, unless there is weakness already, but when it has an advantage, such as overwhelming numbers, or a compromised host, then it can ravage a body much more quickly. The idea has been floated in certain papers, and I believe HR also brought it up, that if the virus does not have to enter the blood stream (due to being able to move through these weakened cell walls) then it would not have to leave the liver to breed.
It only leaves to find a new home via the bloodstream when it can't go through a cell wall, but if and when it can, then it breeds in a newly formed liver cell. Ergo in that circumstance the liver could be chuck full of virus while the bloodstream would appear very low in VL.
I think therefore they should be doing more work to lower viral loads. I mean, yes we should make the search for a cure number one priority, but still treat the patients meanwhile. They look for cures to diebetes, but they still offer insulin to diebetics...same idea, meanwhile, until we have a cure, let's look for something that will help people who need help now.

My point was not in any way intended to hurt you but rather to say this is why more work needs to occur on how to eliminate as much virus as possible so that those who can't treat and cure might also survive just as HIV children now survive.  I think that day is coming. The antivirals we have now are hard on the blood, but one day we will find ones that won't be, that will interrupt the virons replication perhaps without destroying the blood, and that would be ideal, that could have helped your son, but first someone has to see if the lower viral load could be helpful and so far no companies seem to want to try that approach. That might help most people, although with hemophilia as I said, the concern is different.
I don't know...either way we do know the virus is chewing up the liver cells for instance...it makes me think of things that chew...how about rats for instance, if I knew there were rats chewing on my wiring in my house would I perfer one rat, or a thousand?  One rat chewing things up, or a thousand....which would we prefer...well none, but one would be my next choice...Well, then why can't we see the damage is occuring more quickly with more "rats" in our livers?? Or in our blood cells while they are hanging out there...they damage many cells not just liver cells.


Obviously with hemophilia just having a low viral load alone wouldn't have helped Nick, because of how many ways this virus disrupts normal cell function a person with such a delicate system will see the full brunt of what the virus does and much sooner, and it breaks my heart that kids have had to suffer this way. Especially that kids end up on the receiving end of al this seems the most egregious thing about all these diseases.

It's hard for me to see your reasoning however that lowering the viral load might not help most, I guess because we do see HIV folks having viral loads of 10, or 40...and they then live 30 or more years beyond what folks lived when they did have the high VL's.  And since HCV is it's kissing cousin, the closest virus to HIV genetically, and behaves very similarly, destroying body functions slowly but surely, why does it not make sense that a lower VL could mean less damage ergo less inflammation, less systems shutting down and ergo a longer life?
I'm not saying it's the only thing that might help, just that is could also be something that might slow the process.

Did you ever catch the studies I posted years ago on the rates of endocrine dysfunction in hcv patients?
Their rates of diebetes, thyroid, pituitary, etc etc...are 2- 10 times higher than the general populace on a whole host of endocrine functions, and we know the diseases caused by all those glands failing also cuts life shorter.

179856 tn?1333550962
by nygirl7, Feb 18, 2011
As everyone knows my VL was very low all the way through and I was stage 3. It didn't help me one bit since it took me a long time to treat to get to SVR.

Avatar universal
by child24angel, Feb 18, 2011
MB, I can't read all of your post....it's too much.

What I do know....IS HE DIDN'T HAVE A CONDITION....he had hemophilia, passed on my me.
HCV through blood tainted products to save his life.
MB...viral load has nothing to do with hemophilia.  

Brother had Aids, HCV, Hep B. and hemophilia.

So....now I'm lead to believe liver failure was due to in part from hemophilia.???
His hemophilia was well managed.  It was HCV.

Then all the doctors....surgeons....hepatologist, hematologist on and on and on, lied to me.







233616 tn?1312790796
by merryBe, Feb 18, 2011
sorry you couldn't read it elaine, it was meant to help you.
I'm sorry for you and for Nick, truly I am. I also got hcv from a blood transfusion so I know what if feels like to receive a "life saving" product that ends up being life threatening instead

no I don't think doctors lied to you....but a lot of the information in that post is fairly new, it hasn't been known long, and probably still isn't known by many. I'd refer you to the study but if you couldn't get hrough my post you would ..on it for sure as it was a long and hard read.
To sum it up, I said his condition was hemophilia and that this is what allowed the disease to advance more rapidly as the hcv weakens already weaken cell structures more easily. Controling amount of virus could have helped him but they did not know that, and still don't have drugs to lower VL.
no one lied to you, they just didn't know then.


Avatar universal
by benprozac, Oct 18, 2011
I got told my posts were spam, not because they were the same but i had already made my stance clear against antipsychotropic drugs. Yet for those who have a propsychotropic stance their posts are not spam. Funny that.
You can have an opinion on these forums so long as it is aligned with those of the moderators and the site.

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