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But as soon As Dr. Dietrich started speaking and showed the slides, I GOT IT!
Now, at least I have a half dozen reasons I can UNDERSTAND for doing TX.
THANKS!!!!!!!!!!
I'm sending this through to see if your post appears. I can't see it.
But yes when Dr. D gives the presentation it is very informative and easy to understand. What he said about alcohol too, the dreaded forum subject. ha!
I was surprised to hear him say that some can develop cirohsis in 5 years, while some others can take longer. That statement made me say I'm glad I'm tx. The way he spoke, the interferon is here to stay for quite a while longer and all these new meds are just going to be added to the Riba and interferon. I thought maybe that they were going to replace these current meds, but I guess not anytime soon.
have a good night. hope all is well with you.
His response that for every year you put off treatment your chances of SVR are reduced by 1 to 2 percent really got my attention and made me glad I started TX despite how difficult it is for me.
He seems like an amazing person and a great doctor.
I will add some of the other points that impressed me later.
thanks again.
:))))
It really gives people something to think about as far as tx. It seems like tx may be the thing to do even if the person has little to no damage. That's the category I'm in, but after watching this it made me feel better about my decision to tx.
Glad you found time to watch it.
see ya forsee
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yeah I know what you're saying. That got my attention too.
nix to alcohol! also to the dreaded HIGH FRUCTOSE CORN SYRUP, which is in almost everything sweet, I've been going on about this stuff for years and so many people think I'm nuts for doing so, Bill Maher gets a lot of grief for talking about it too...there he said it in no uncertain terms, it's one of the major reasons why there are so many obese people in this country...the people who purvey this are killing more people then all the dope peddlers combined...course it's up to us to decide what to eat...this is really good and I'm going to recommend this to my friends...
I was wondering if he was going to talk about his own battle with hep c, if I'm not mistaken, but that's okay...the only thing that kind of chaffed at me, and I hear this emphasized from so many doctors, it that he kept on going on about people without cirrhosis not having any symptoms, while there are many people like this I'm sure, I wish he would of talked a little about all the people who have stage 1 or 0 liver damage, yet they get plenty of symptoms from the virus itself...but that's my only quibble really...thanks so much My Own!!!
I feel the same as you. It really hit me when I watched it. Yes I'm hoping that it may help people make a decision. Part of me agrees with Jim as far as waiting if you have little damage, but I didn't want to wait. You have to have a different personality than mine in order to wait. I want to rid this if I can. If I can't God forbid, than I will change my perspective towards the virus in order to live at peace with it. I wouldn't want to do tx again. I would get my PCP to look more at hep being he is holistic. I gave him the flyer with this video so he could hang it in his office and also to remember to watch it himself. I had mentioned the importance of telling folks about hep. He does have other patients who are going to hep docs for tx also. So hopefully he wll start to study it a little and bring awareness to his patients.
I sorta feel the ball is in our court to really stress to our PCP's the importance of talking to all patients about being tested.
You saw how Dr. D mentioned that the PCP doesn't test and if they do its only if enzymes are abnormal, when some heppers have normal enzymes.
Maybe if everyone on forum gives the website of the video to their PCP, it would be a start to more awareness. I mean it is sad that when you think of it, its the primary care doctor who is the one who will make a difference in hep awareness and they know NOTHING ABOUT THE DISEASE.
So its really up to us to really talk a blue streak to our PCP's.
Good talking to you.
(Im paraphrasing)
Who can afford to wait to start tx?
Anyone whos;
1 getting younger
2 getting thinner
3 doesnt eat carbs
4 will never get older than 40
I think there was a #5 but I forgot it.
Another point I found fascinating was when he broke down the percentage of people who, after being diagnosed for Hepatitis, go on to get treatment.
He said it was 10%.
According to his guidelines, all 100 patients should have treated.
I gotta watch it again and take notes.
Pass the popcorn, please!
Yes the diet, fructose, McDonalds too (weapons of mass destruction as he described it ha!)
Obesity in America is really bad. My mother brought up a good point the other day. She said no one was overweight back in her day. She said look at the old movies. Look at all my family pictures .We all were thin she said. And its true.
(But I do believe that some people do have a slow metabolism and it takes more work to try to stay thin.) And their diet was alot different than most people today also. Plus the old 10 mile walk to here, there and everywhere. Those stories we were always told as kids that started with "you don't know how lucky you kids are."ha!
But really when you think of it. I don't hear kids playing outside in my neighborhood (thank God ha!). They are all indoors sitting at their computer playing games. No wonder every kid on the block looks like Pugsly on the Adams Family. We were outside riding bikes and roller skating and all that, so we were thin.
And yes I agree Dr. D does have a very nice personality.
I guess he'll cover other things in future videos. Maybe some of the other stuff you mentioned. That would be good.
see ya later, good talking to ya!
see ya later.
I watched this video as well and the scientific stuff in beginning -- well, I don't know what was what, but balance of video very good. I was told that I have moderate fibrosis, but this was with blood test Fibrospect II, which now I've been told has room for error. I don't want to gamble at age 55.
I had dinner with an old friend last nite who I had not seen since Nov. 06. I started tx Feb. 5 of '07. I had a great compliment as she told me "with all the high powered meds you're taking, you'd never know it -- you look great -- better than ever really". WOW, that was an eye opener. My diet has definitely improved.
Glad you watched the video. It helps us all to have it broken down as to what hep is all about. Plus anyone around you who knows you have it, you can share this info with by having them watch. That will hopefully have them think about getting the test themselves when they see ALL need to be tested not just IV drug users.
Thats good that you don't look like you're sick and that you look good. I'm glad no one has noticed with me either and those that haven't seen me in a while give the "oh ya look good, what are ya doing blah blah blah"
I feel like saying "oh its the poison in my system coupled with the virus that has been munching on my liver for so many years, thank you." Iol
Tonite is my half way point already. I have a feeling down the road I may come out of the closet with having the virus. Maybe after the stigma is dropped. Lately I really feel though that it is our job to really have major discussions with our PCP's about understanding more about hep and talking to their patients about it. I feel so strongly about that at this point. Getting to the PCP's and shaking them is what will bring public awareness. People don't routinely go to hepatologists, so the hep doctors cannot get the word out to the public. We have to be the activisists even if we are closet with the public, we should use the primary doctor as our individual spokesperson.
see ya later. nice talking to you.
see ya
-- Jim
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foresee brought that out also. I will have to watch it again. I think he said many people don't know they have hep until it has caused damage. (or something to that affect).
Though extraheptatic should be mentioned, I think that if there was an emphasis on having 'signs' of hep, many people might say 'oh I don't have that, no need to get tested' because many are asymptomatic.
Maybe extraheptatic symptoms will be covered down the road in another video. But when you think about it there are probably many people that 'think' they have arthritis and its really hep and not arthritis. Thats scary.
I never got those aches and pains and arthritis stuff...
I feel like I'm sick with the flu, but I'm not sick with the flu, it's difficult to explain, but it's hep and I know many others with relatively low liver damage that have these same symptoms, fromt the virus mostly maybe...some people only get them in flare-ups like me,
others have low level symptoms like these all the time and they have relatively low biopsy scores...my doc said it's my immune response trying to get rid of the virus...maybe people like me are better off because at least our immune systems are trying like h@ll to fight off the virus...and when I get these flare-ups, I take my regimen and it helps with the symptoms, and maybe even keep them at bay...I realize not every hep c patient manifests thier disease in flare-ups like me...once again, this disease is all over the place...
Perhaps what Dr. D wanted to do with this video is talk people who are waiting--- into getting tested and treating...and many of those people don't have these symptoms yet, or may never...and he wanted to emphasize to *them* that just because youre not having symptoms, doesn't mean your not sick with the disease, newcomers per se, that don't know a lot about the disease...
I don't think saying that part of the presentation is aimed at people like me...what's aimed at people like me in the presentation is why watch and wait? and all the reasons to treat now as opposed to waiting....
-- Jim
they all go except for the fatigue, which becomes much more mild when the rest of the things go, it's not profound fatigue anymore like within the flare-up...
Also during thse flare-ups I look scary sick, pale with the darkest circles and a host of other things that are too gross to talk about, severe diarrhea, and that's the only time I don't feel like eating at all, then it just all goes away at the same time and I'm normal again...
if it was just fibromyalgia, it wouldn't present like this with liver pain, and I don't have achey (achy) muscles and joints...my glands all test out okay...
I've talked to other people and read on hep c medical sites (even on Janis) that some people manifest this way, in flare-ups, I've been tested for just about everything else under the sun and they've come up with nada...the only disease I have is hep c...and of course menopause, and I've been to the best menopause sites and talked to obgyns up the ying yang, and menopause doesn't do all THAT stuff..thank god...though I do think the hep is making the menopause worse and visa versa....doc says of course many hep c patients are going to feel profound fatigue, or less fatigue, there is a chronic inflammation in the body...
though I'll say one benefit, since Ive been getting these flare-up and become symtomatic with hep, I haven't had one cold, one case of the flu, nothing like that but a mild spring allergy...and I'm with this kid all the time and she's sick a lot...I used to get flu or a cold once a year or so, but now nothing like that for years...doc says it's because my immune system is on full speed trying to rid the virus...I remember reading a few members who reported the same thing, that once they became symptomatic with hep, they didnt get any colds anymore...strange...
But it's that *possiblity* of maybe feeling better, or at the least ridding myself of the virus (big plus)....without a lot of improvement on symptoms...
Even failing that, maybe take my liver back to stage 1 and buy myself a few years, there have been people here who didn't even SVR but they ended up feeling better (yeah, and some worse) and taking themselves back a tic on their histology...
like it says in that classic movie of the decade...Napoleon Dynamite..."Might as well do somethin while I'm doin nothin":)) This whole thing as it stands is one big giant **** shoot as I see it, and I guess I'm just ready to roll the dice (cough cough, did I just say that? Ha ha)...I'm doing a lot of tests now then I see the Hepatologist on April 23 to talk over all these options...thanks for you concern for me and everyone else...you do a lot here....
But you know I'm glad I waited as long as I did, cause they know a lot more now then they did back then...plus I've been able to save some money, and get some things in order, etc...
I can understand those with AIH, but other than that, our bodies make interferon so this would seem the least harmful to us? But of course 'if 'the interferon is what causes the severe sx in most people I can understand the reason for the doctors wanting to have meds minus the interferon.
For someone such as myself who doesn't feel the physical problems brought on by meds (mental is another story though lol) I would think the interferon would be the least harmful compared to riba?
Just read any of DoubleDoses (DD) recent posts for a good overview as he explains it better than I can. You'll find some of his posts in the threads I list below which are post treatment experiences from folks here.
Many of the problems cited are no doubt caused by an altered immune/metabolic system from the interferon. By eliminating interferon from the mix we start to attack the virus directly as opposed to amping up the immune system. A crude analogy is to put someone in a burning fire to rid them or lice. Yes, the lice are gone but so is their skin. The newer drugs leave the immune system alone but target the virus.
Another crude analogy is trying to drive a small nail into a fine wood desk with a sledghammer. Interferon is the sledge hammer, the newer drugs are a small hammer that hopefully will do the same job with less collateral damage.
If I knew or fully understood the ramifications of all the interferon I put myself through in 54 weeks, I might even have balked treating as a stage 3. At least I would have had a more recent biopsy to see if things hadn't progressed.
Combo treatment now is an archaic treatment non-specific to Hep C. The interferon boosts the entire immune system instead of attacking the virus directly and they don't even know exactly what the ribavirin does.
The newer drugs on the other hand are designed to target the real enemy -- HCV, not make the entire body the enemy. Right now, they still need the interferon until they can solve the riddle of just the right mix of more specific drugs to achieve SVR.
Does this sound like a rant against interferon from someone who was burned by this drug for 54 weeks.LOL. Well, you asked me, and I suppose you knew where the answer was going. Do take the time to read these links before posting something like "should I extend treatment to make sure the virus is really gone" :) Be well.
Post treatment issues, many no doubt caused by interferon.
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
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Thanks for your answer. Everything makes sense in what you said, but I still will always wonder if its really interferon that is the MAIN problem.
The thing that I am still confused about is the people who seem to have bad sx seem to experience them from the very start of tx. If the interferon was definitely the problem I wonder if sx would be seen so early on? The only reason I question this is because the interferon is the only thing in the mix that our body is used to, so that would lead me assume it wouldn't be the bad guy and maybe its the riba or the helper drugs, possibly combining drugs that shouldn't be combined?
Thanks for the threads to read over. I am off the computer after I post this. So I will read them next week. thanks again
best nick m
-- Jim
I've had allergies, an immuno suppression disease, and asthma for two decades.
I've had surgery, been scoped, had steroidal injections of the turinates, been on antihistamines, antibiotics, theophylline, prednisone, nasal sprays, had nasal irrigation, cat scans, MRI's, immunotherapy everything in the book.
Basically I've been feeling like cr** all this time.
A couple of years ago it got significantly worse. I was diagnosed with sciatica among other things. (another immune suppression disorder).
This past September, when I went back to work after summer vacation, i found I literally had to go to bed (and sleep) by 8pm, the latest, just to get up the next day.
I accepted it as my health issue, idiosyncracy, and told myself, well, I guess that's what I have to do. I need my paycheck!
But when hep c was first suggested late August, and then confirmed through a half dozen blood tests and then endoscopy and biopsy in early December, I felt like I had at least a PARTIAL explanation for the problems I've had all these years.
I now wonder if the onset of allergies and sinus infections didn't coincide with the onset of hep-c.
Of course, I'll never know for sure.
But it seems like there could be a connection.
What do ya think?
I checked out the threads.
I know the post tx sx have to be a nighmare to anyone going through them, but I only wish more folks that were here on forum would check back in and let us know how they are doing.
I guess there will always be some that suffer from post sx, but I wonder what the actual percentage is. Maybe not enough people are reporting these post sx to their doctors or maybe there aren't a whole lot of people suffering from them?
Either way, no matter how small or big the percentage of people that are suffering, I hope doctors start to look into this. Afterall we go into tx hoping QOL will improve and some find just the opposite when tx is finished.
Hope you're doing good these days. I'm still waitng on labs from the first week of March. I'll email if I don't hear anything by the beginning of next week.
see ya later.