symptoms

[kristina paula]

evryone!

  if symptoms do occur..does "dark urine and light stools" will be the most likely to occur?,anyways,i will have my test after 4 mos. as evryone said,4 mnths is the right time to be tested.

[peno]

hi i was informed i had hep c back last year in july and was told i was developing belly ruben can you please send me some info on the belly rubin and send it to ***@**** but see how i had to spell it please ?

[peno]

hi i was informed i had hep c back last year in july and was told i was developing belly ruben can you please send me some info on the belly rubin and send it to ***@**** but see how i had to spell it please ?

[peno]

hi i was informed i had hep c back last year in july and was told i was developing belly ruben can you please send me some info on the belly rubin and send it to ***@**** but see how i had to spell it please ?

[cuteus]

I do wish I had all the time in the world to search out studies and present them to this forum. I work fulltime at another position and can only access the computer in limitation.  If my life depended on finding proof of hcv not replicating in the brain, because of possible "fibrosis" or cancer, I would.
  I only know what has been presented as retrovirus hep c preference in many hcv sites including but not limited to the CDC> It prefers liver cell for replication. Does breaking down of the glia make a case for the virus trying it for possible replication? does anyone really have a good theory yet? Since the EMCs have been found in conditions manifesting as neuropathy in hcv infected pts and the glia is part of the CNS could the same action exerted on this other tissues apply to the brain?  As you said; many unanswered questions still outstanding.

[thanbey]

I agree with you.

But, we have to consider the possibilities if we wish to dispel them. Ignoring or denying the evidence we have, pro or con, is not productive.

I, too have little time for the type of research people demand. That is why I have compiled the data on the website. It saves time and allows me to work more efficiently.

Best thoughts to you,

thanbey

[thanbey]

I agree with you.

But, we have to consider the possibilities if we wish to dispel them. Ignoring or denying the evidence we have, pro or con, is not productive.

I, too have little time for the type of research people demand. That is why I have compiled the data on the website. It saves time and allows me to work more efficiently.

Best thoughts to you,

thanbey

[LvdByGod]

if you were my doctor what would you suggest i do? given the negative articles and consults that you have had with many experts?  WOULD YOU HAVE ME STOP TREATMENT NOW??????? or are we on the course of tx, that at the time, is the best for us?

even if interferon does'nt cross the blood brain barrier, but people who take it have livers that are being stopped from dieing anyway, and virus's are staying clear in the blood for at least years...QUESTION IS: what would YOU rather have us die from? liver disease or some "possible" future problem in the brain THAT IS NOT EVEN CLEAR YET?  

THE STANDARD PROTACOL FOR HCV IS INTERFERON/RIBAVIRIN....THERE IS NO ARGUEMENT WITH THAT...

the info on the blood brain barrier possible "problem" is still being investigated. some of us don't have that long to wait for some "possible" problem OR solution for that... we would rather have the possible 15 or more years added onto our lifespan NOW...

let me remind you...you do not have liver disease....you're an armchair quarterback...by your posts YOU have nothing to loose,BUT WE DO!!! discouraging people from trying the standard protacol could cost someone thier life!!!!!!!!!there are alot of people here trying to decide whether or not to go for it and try the interferon...


this added lifespan givin by tx will give the neurologists and hepatologists time to figure things out...and they are working on it!!!!...please read....     http://www.nanoparticles.info/

IF we need to retreat someday so what, at least we have a chance to be clear and cease liver damage until then...many of us don't have time to wait...i being one of them....


so let's encourage those on tx instead of freaking people out with your "possibilities" of future problems....many of us may not even be here for those future problems to effect us... we may already be dead, esp if we decide NOT to treat our hcv,because of "possible" TX problems...

lady, for you everything is in the science books and meetings you have and your investigations... you have nothing personal to loose, it's easy for you to spout out WARNINGS...

just be careful because although they may be true in some cases, you're dealing here with people's who's only hope is the standard care at this time (interferon/ribaviron)...and i wouldn't want to be in your shoes if someone is scared off by "possible" problems with the standard tx. and then they die waiting for the perfect treatment....or thier livers get cirhosis while waiting...which is alot harder if not impossible to revearse...

EXAMPLE:  chemo is not the "perfect" treatment for cancer patients...there are alot of side effects and possible problems/dangers...yet it is thier ONLY hope.  and i have a girlfriend that is alive today to care for her children because of chemotheropy.and she is greatful for whatever extra time she is able to have them and raise them...

are you here to take our hope away from us...or what?

i happen to agree with your articles on the blood brain barrier by the way...but, i don't rub it in causing needless fear of the unknown...someone might decide not to tx because of fear... and then what? they could die waiting for this perfect tx to come along! i don't want that on my sholders. DO YOU?

just be careful! people are making decisions all the time around here and so state your concerns and move on. we desire to be educated just not freaked out to the point of not treating or going off tx.

i'm still not sure of what your motives are with all this? you seem to be the only one here that posts there own site that askes for money and you personally are not dealing with hcv or a loved one that is dieing...

when your in our position ODDS don't matter to you, because each of us has no idea which side of the odds we will fall on. you say the odds are that we won't die of this...could you please look into your crystal ball now and let each individual here know for sure what side of the odds they are on. if only a few % will actually die of hcv, we want to know which ones of us that is, and we will gladly go off tx now...but, there is no crystal ball and our lives are worth more than "the odds"...we won't know what side were on until it's too late...

if some of us don't make it. it will hurt all of us like hell...because our motive for being here is to support one another in what ever the point of the journey they are in. we are family to one another...i don't want to loose ANY percentage of my family if at all possible...PLEASE THINK ABOUT THESE THINGS BEFORE YOU POST YOUR COMEBACK!!!   SANDI

[thanbey]

I am interested in the research paper that concludes that hepatitis C cannot replicate in the brain.

This is not central to the concerns that have been found on autopsy. Those findings have shown that the virus breaks down <a href="http://faculty.washington.edu/chudler/glia.html">glia</a>
in the brain. I am not aware of replication being the issue, but would very much be interested in including any studies you are aware of in the information I have.

Thanks,

thanbey

[thanbey]

There is absolutely nothing in the article that you have linked to that has a scintilla of evidence that interferon has any effect at all for hepatitis c or that it crosses the blood brain barrier.

Are you suggesting that because chemotherapy, which includes a number of drugs applied directly to a brain tumour during neurosurgery (opening up the skull), has some benefit for a metastatic brain cancer there is a logical relationship between that and a subcutaneous injection of a pegylated interferon?

I doubt that there is any doctor anywhere that would suggest that drilling into the patient's brain to inject interferon, pegylated or otherwise, would be worth the risks for someone with hepatitis C. There isn't an Investigational Review Board (IRB) that would approve such a study due to the dangers the procedure required.

thanbey
Hepatitis C Outreach Project

[cuteus]

back when we had this discussion, I read up on the links provided and one of the articles stated a list of circumstances that make the barrier permeable to crossing of larger molecules.  i thought the issue was settled back then, so I did not save the link.  The article stated that the barrier is not always impermeable, that some meds and conditions change its status.
  Plus, in reading about the globulins present in other tissue and how they found viral particles attached to them, it made me think if it is the virus or some particles found in the brain? In any case, if it can't replicate in the brain, who cares? Maybe they are scouts that got stuck on the OTHER side. if they are reservoir for hcv, then at recrossing we'll zapped them.

Chevy, the interferon crossing only works for those who had a one sided headache.  we are ok. ;-}

[audreywald]

Just speaking for myself, you could not pay me to extend this nightmare. I am not sure if I will make another week of this hell.

Maybe my sides are not normal. I do not know. But I am going to make some calls and try to find out. I'll be damned if I spend another night writhing with abdominal pains.

[LvdByGod]

HERE'S AN INTERESTING ARTICLE BY A DRUG CO. YOU MAY ALL WANT TO LOOK AT....
at least someone is looking into the problem.

http://www.nanoparticles.info/

[thanbey]

It matters.

Nothing is settled because knowledge is not static and people want to know.

You asked for the articles, yet refused to read them. That is your choice.

It is inaccurate for you to suggest they were never provided to you or that your views are supported by original peer reviewed research from around the world.

You and Dr. Dietrick might be right. I hope you are. But it is too early to be certain of anything at this point or to be making any statements suggesting that something is known when it clearly is not.

thanbey

[thanbey]

It appears that if you  undetected at one year post treatment (SVR), your liver disease is improved considerably and possibly cured.

Until we have more research on other areas of the body, and that research is only in it initial stages, we don't know for certain whether other areas of the body can act as a reservoir for the virus beyond the SVR. We have really only studied livers to this point.

Hepatitis C Outreach Project in partnership with the National Neurological AIDS Bank in Los Angeles (at UCLA)submitted for a grant to NIH last year.

The NIH also had a conference on Neurology and Hepatitis C (and there was one on Kidneys and Hepatitis C as well) last year. I understand the plan, a term I use loosely, is to establish a National Neurological HCV Bank on or before 2006 similar in scopre to the National Neurological AIDS Banks (there are five, I believe)

thanbey

[DonL]

Does this mean that clearing HCV from the liver does not clear it from the brain? Does an undetectable test mean that it still lurks in the brain? If so, if clear after 1 year, does this mean that you may still be infected?

This seems contrary to what my doctors have led me to believe--that if I am clear one year after treatment, I am considered cured and that any resurgence of HCV after 1 year is probably a new infection.

[DH Bill]

At the stupid rate we are going will we be pea brains at the end of tx?. Maybe thats why some people like to come here and think they can impress us with long winded supposed knowlege.

[thanbey]

Hepatitis C absolutely has been proven through micron spectroscopy to be in the brain, acting on the glea. It has been found on autopsy in a study at UCLA and the National Neurological AIDS Banks, who used HepC patients as controls at my urging.

This has been found repeatedly at this point by research teams around the world.

As to whether any interferon can cross the blood brain barrier, the current thinking among NEUROVIROLOGISTS, who study viruses and the nervous system, is that is does not.

Hepatologists can render a guess on this if they with, but it is outside their area of expertise, which is the liver. Dr. Dietrick is revered, obviously, by some and rightly so, he is not a neurovirologist and I am unaware that he has done any original research on the topic. If you find any by him, please do share them.

For articles on this by researchers who have done original research on this topic, look for the following authors:

Forton , UK
Firenzi, Switzerland  
Aronow, USA.



thanbey

[Indiana]

Woah...slow down.
I have read some articles on the blood brain/barrier stuff and it said that they have found Hcv in the brain and in spinal fluid. I have also read that the interferon molecules are too big to cross it.  
So WHAT?
The theory goes something like this.....The Hcv has a limited life. It will die of its own accord given enough time. It is thought that it cannot replicate on the other side of the blood/ brain barrier. So the tx remains the same. But that is also PART of the reason why some docs want to take the type 2's and 3's to 48 weeks. If you can kill all the virus in the blood, and then wait long enough for the stuff accross the barrier to die or come back and be killed, you are safe from relapse due to anything accross the barrier.
I will search my files and try to find the links I had to those studies and papers explaining that.
I do know that BOB K had some info on that too. Maybe he will drop by.............

[thanbey]

If you find peer reviewed articles on that, I would be very glad to add them to the database I have on the HCOP website.

They must be peer reviewed, however.

In the meantime, here is the information I have:

<a href="http://www.hcop.org/hcvinfo/category/index.cfm?categoryid=16">Neurology and Hepatitis C</a>

thanbey

[DonL]

There were some posts a while back about the interferon and the brain blood barrier. I think the consensus was that the hep c doesn't hide in the brain and that when you clear, you clear everywhere.

Still, it is happening to me. I figure I'm already 10% stupider than I was in September. Of course, it could be worse--I may be too stupid to calculate it properly.

Where in Mass do you live? I'm in Western Mass, Amherst area.

[DH Bill]

I agree with britgirl. When I got non A/non B back in 67 I was very sick with yellow eyes and white stool. I went to the doc while I was sick and was dx with this hepatitis at that time.

[raheem]

I had asked my doctor if interferon crosses the blood-brain barrier and he said he did not think so.  I know Dr. Dietrich has said it does and is evidenced by "brain fog".  However, I think brain fog may simply be from anemia and perhaps neutropenia. I think Mike Simon has also said that the interferon molecules are too large to cross the blood-brain barrier.  Sorry I have no data or studies to back up my comments.  Gee, that would be great......no HCV in the liver, just HCV in the brain, shrinking it down to the size of a walnut!

[thepoet]

Yes, the first thing I noticed was when I ate cereal, the cptain. lol, I got a bad smell and constent tossing up. Then the yellow eyes, light stool and really dark urine. But to my understanding, the jundice is from the damage to the liver,blocking of the biles, so is the light stool and the dark urine is from the build up of belly rubin which is trying to get out from your urinary track. If you start to itch thats from to much belly rubin in your system and can also contain High levels of amonia. When the hep c gets at your liver it causes all kinds of bad effects because the liver isnt cleaning out the possions like it should.

[britgirl]

I was one of the people who did get an acute stage of HepC. I was very, very tired and my eyes went a bit yellow, but no strange urine or stools! This was about six weeks after I was exposed to the virus. I was tested and had non-A non-B hepatitis (this was long before hepC had been isolated). Why can't you be tested now? As i say, my test was positive after only 6 weeks.