hi and welcome to the forum i see from your profile that you are about to start tx if you tell us more about yourself ie geno type what tx you are going to start then maybe we can help you,my hubby just finished tx and without the support and sound honest advice from this site i dont know how we would have coped. Good luck for future
Not sure exactly which questions you're referring to, but this forum does get a bunch of "can I get HCV from this or that". Its sometimes difficult to separate the serious questions from the trolls, so most give a short honest reply to direct the OP to more information which is readily available online.
I think the more important thing is the quality of the answers. There are many knowledgeable forum members who are very willing to give informative responses and guidance - sometimes better than the caregivers.
As in any forum there is an ebb and flow of activity. I'd like to think that there are no bad questions, but some do seem silly. It does take a while to sort things out, so welcome to the forum, and feel free to ask away. ;)
There are thousands of questions asked on this forum, some of them not so good, but, as pointed out above, they all get pretty good answers. The good ones out number the questionable ones by a wide margin. I suggest ignoring the not so good ones...Mark
The general public typically lacks medical knowledge beyond physical fitness... so when they're told they or someone they love has HCV.... well, a lot of questions arise which seem to clueless to be real to most of us. But when I think of my own medical knowledge 40 years ago when I most likely contracted it... I'd have been in the same boat. Criticizing is easy, but helping can be difficult.
I wouldn`t have made it thru the first 12 weeks of treatment(TX) without this forum. If you start having side-effects(SX) this is the place to ask. I should say WHEN you start having SX but I really hope that yours are mild. Stick around, maby a few dumb questions but the best of answers are found right here. Good-luck on your TX.
This is a good sight....it has helped me a lot...but I took the time to read back posts...sometimes info you need is answered in another post...the senior posters will give you website and info you can refer to.
To answer anyone's question they need basic pertinent info. and they won't give you medical answers because that would be unethical but they will relate their personal experiences and guide you to who or where to go.
Anyone who comes on this site isn't the only person who has HCV or Cirrhosis. There have many that have walked in those shoes before you.
So many of the new questions have already been answered over and over so reading past posts done in the last 3 - 9 months. I don't know how some of the most learned posters have the patience to answer the same questions over and over. But they do. Because they care and know each new poster is an individual who wants some info.
You can tell I am blunt because I have no patience with negativity, I have stage 4 cirrhosis and HCV and will hopefully be accepted on the transplant list. Have been through 3 different trials over the last 20 years...was accepting for tx and the new gilead but my hepatogolist chose not to do either because my liver is so bad.
There are people on here who are in worse shape than I am. We rely on each other. Maybe this isn't your cup to tea...there are other sites...but I will stick with this one because I grown to know and appreciate the posters.
If I hadn't had this group of people to ask questions I would still be in the dark. Good luck with your tx....there are a lot of articles and posts and info related to tx on this site.
As an ex/manager/supervisor all my employees knew not to come to me with a complaint unless it was detailed and a solution. What is your solution?
Good response. To add a little, giving medical advise without the proper license to do so is illegal in all 50 states, not to mention that the possible civil liability can result in huge judgements...Mark
OK, five and a bit years ago, I moved away from a violent relationship. I met a gentle man who introduced me to Aloe Vera and I have taken about 50 mls every day along with pomesteen, a very strong antioxidant. I have replaced a lot of household items that use chemicals with aloe vera products. I think this is more popular choice in US of A than here in Oz, but anyhow, I reckon the aloe has helped keep my liver functioning well. Now, I understand that Comlementary medicine may not get rid of the virus, but I'm willing to give it a try. there's also a more extreme representation of this viewpoint in an article titledAlternative Hope for Hep C. I do understand that the lifestyle choices may just help management of the virus! But, I think it shifts the responsibility back on the individual to take responsibility for ones own health! A miracle medical cure jst doesn't sit tight with me. I think I share a like spirit with the author of the above, Diana Donaldson. the liver doctor mentioned St Mary's thistle at my first appointment, I tried so hard to remember the herb that had skipped off her tongue. My reading pointed me to this herb but it has to contain Silymarin. Look I don't claim to know everything. You have to put everything into perspective, and I do understand the skeptics. I've also introduced licorice root tea, magnesium oil rubbed into the skin, taking organic sea salt in my water.. Sugar supplement with chromium... That was just after my first naturopath appointment. the second appointment will incorporate some treatments to target the virus so I guess it won't taste quite as nice......
In the US we would probably use the term, 'alternative medicine' for what you are calling complementary. I think the term complementary is actually quite nice and accurate.
Nonetheless, the sad truth is this insidious virus is not easy to get rid of.
Determined to find an herbal route to rid myself of hep C, I found none existed though complementary medicine can indeed help with symptoms of the virus and side effects of treatment.
What is always of primary importance, is the health of your liver, when considering when to begin treatment.
I had ESLD, end stage liver disease, took silymarin, ( the active ingredient in milk thistle ) as well as a host of supplements. This did not stop the progression of the virus and I am only here typing today because of a liver transplant that saved my life.
You are wise to rid yourself of chemical cleaners in your home. Our livers filter everything we eat and breath. But this alone will not improve the condition of your liver, just as eating organically helps our livers since they don't have to work so hard but it will not reverse damage from the virus.
Currently the only way to be rid of hep C is by taking strong medicines, though less difficult treatments than interferon are doing extremely well in clinical trials.
Seems I too had some great struggles with understanding what is here at this site.
Then I found as has been for so long in my life, I have trust issues, and find that apparent willful stupidity are misleading others is very harmful and have no tolerance for such things.
Honestly, I believe there are many here who are the same, We are tiring to get healthy, and this is scary as hell,
I have over the course of 27 weeks, found myself lost in what I had began, and had it not been for the few whom have chosen to bear with me, and have helped me through times I would,( if I could ) pull the plug.
To close I would only wish you the best of luck, take what you need and leave the rest.
If you click on the link I provided, one of the first discussions by HepatitisResearcher is on the subject of anti-fibrotics. HR probably has more knowledge on this subject than any other doctor or researcher in the field of hepatic virology and how the virus damages the liver. You may wish to read some of his material before visiting your naturopath.
His discussions are some of the best real information on complimentary medicine.
Hello, FiFi~ have you had a biopsy yet? Some peoples' livers dont seem to be affected by Hep C, as much as others. Alot of people will be at Stage 2 (liver is half-way shot out, as stage 4 is cirrhosis) after having Hep C for 20 yrs. Others have stage 0 or 1, and other are at stage 4, in less then 20 yrs.
The point I want to make is this: if your liver is still healthy (stage 0) then you would not need all the expensive Alternative products.
I tried to cure myself with Alpha Lipoic acid, high doses of Vitamin C, sam-E, Selenium, NAC....zinc, vitamin e (the list goes on, and I still have two shelfs of these expensive products on my shelf). I did all the right things: no alcohol or drugs, I ate well, took all my supplements, etc.
Sometimes I feel like me trying to cure myself actually got me sick. My liver enzymes became very elevated after this regimen, and my platelets went below normal. After I was Treated with Interferon, Ribaviran and Victrelis, I cleared the virus after only 4 weeks of these meds! My enzymes went back to normal. Last feb I wnet for my 6 months post Treatment labs, and still no hep c virus, so my Doctor told me to consider myself cured.
Also my platelets went back to normal, so it wasn't cirrhosis making them low (my biopsy had me at a stage 2, but with grade 3 inflamation)
My Doctor thought that because my body was trying to fight the virus on it's own, so strongly, that I had tons of antibodies in my spleen, causing the platelets to drop.
The people who arent made sick by Hep C, are the people who's immune systems are ignoring the virus. So by us trying to cure our-selves, via these immune-boosting supplements and antioxidants...it makes me wonder if it actually made me worse, the Alternative Medicine route, that is.
No biopsy, the fibroscan is used instead which registered within normal... Wouldn't a biopsy depend on where they take the specimen from??? The liver is quite a large organ. Isn't it likely that Hep C causes damage randomly, so a sample from the top left side could be very different to the bottom right side?
Sorry, what do you mean when you said that the fibroscan registered within normal? What value was that exactly? As far as I know there is no "normal" or "abnormal" classification of a fibroscan result.
Interesting reading about Diana Donaldson, I can understand why it resonates with you. Unfortunately her website does not seem to be up to date in regards to treatment choices out there and on the success rate. Not to mention that she has some quite inaccurate claims about the so called results she had such as the 2/3 drops of her VL load. All of us had this on a regular basis without any extra supplements. Is just the nature of this disease to have ups and downs.
Yes, I did have some bad side effects from the Treatment. I decided to treat, Fifi, because my platelets went below normal, and if they get too low, it makes it impossible to Treat at all.
There are around 50 new meds coming out, within the next few yrs, to Treat Hep C, which will be ultimately, Interferon free, and only 12 weeks. You should keep that in mind, but age is also a factor. It is easier to cure, when we are younger, as each decade, our immune systems are that much weaker, etc.
I waited to treat, until my labs changed, they got worse. I think you should wait at least 6 months, and then compare your labs to your current labs. That is what I did, for over 20 yrs. Then when the liver enzymes rose to ten times higher, and the platelets went below noormal, I feared for my life, and I Treated.
The Interferon created joint pain in my hips, but I can live with that, as it is mild. I just dont jogg on the cement anymore, I go to a track with grass, dirt or turf, etc.
If you are a genotype 2, you wont have to do the "Triple Treatment" that you read ab out here, you will only have to do Interferon and Ribaviran. It usually isn't that bad, but Interferon is a gamble, everybody reacts differently. I got the "hemolytic anemia" from taking the Victrelis with the Interferon and Ribaviran, and then I had to do a "rescue med", called Procrit. Procrit is another "can of worms" as it has a "Black Box" warning, and caused my bone pain.
All in all, I am okay, but since the newer meds are on the way, if I didn't have any abnormal labs, then I would have waited.
Soo..are you a geno 2 or 3? And do you have any of your labs in the "abnrmal" column?
Always ask for a copy of your labs, from your Doctors office, as they wont volunteer to give them to you (they should though)
Then just cover your personal info, and post your labs, and we can help you, if there is something you dont understand :)
Ahh, just read your profile, you are a 1b, so as I cal it, (sarcastically", you would be taking the "Triple Treat".
On anothe rpost, you mentioned your Doctor said there wasn't too many side effects....well, I do know one woman who experience very few, and many people, myself included, who had many ill-side effects, the main one for me was "hemolytic anemia".
BTW: I find it a bit ironic that your question about the quality of the questions on an open forum, is one of the more inane ones we've had.
Obviously, by the nature of a forum being open to anyone, we do not have control over what people choose to ask.
I agree with Ophanedhawk. There is no control over what people ask. You have gotten lots of mileage out of this thread. Seriously, was your question answered? I see you have gotten lots of really quality answers to many questions.
I am sick, psychically, mentally and emotionally. And if it weren't for the input of others on this forum I may not have come this far.
I honestly believed I would do this with out a sx one. And yet the only thing keeping it together is my body, meaning my blood work has so far been well with in the normal ranges, sometimes I am convinced they must have someone else paperwork.
I am now in week 28, 20 more to go, and by the grace of God I shall
Thank you kindly.. I am 1b and have one reading in my lab results which is abnormal, being eGFR low but in 3 months went from 61 to 79 and it should be > 90.... Creatinine had been high but went from 85 to 75! Within normal! I agree with you, I will monitor six monthly in case of adverse changes! It must have been mortifying for you when the imminence of it became clear!
In a little over a week, I have gained enormous insight into the wealth of knowledge and the ability of many to share their knowledge... I was surprised that so much energy was put towards questions no matter how 'good' or 'bad'. I'm not accustomed to talking about my health... Maybe it's a case of less is more? I am glad this is available if I do pursue treatment and my question was not meant to alienate anyone, but rather trying to speak the language that we all understand.....
Hi Diana, thanks for your attentive reply... yes, I was told Diana Donaldson verges on a bit extremist... nderstand the outdated ness. reminds me of Forrest Gump.... My fibroscan result, I have found since posting, Thankyou, it reads as follows:- Median stiffness (KPa) 3.3, Interquartile range (IQR - KPa) 0.4; Comments IQR/Med 12%... When I said normal, I noted that at the bottom of the page is a scale, starting at 2.5kPa up to 75kPa.... So my conclusion was that my reading of 3.3 was within the quadrant Absent or Mild fibrosis...... Sometimes I feel that there's gotta be something more interesting to be doing with my time.... LOL
When you are trying to save your life, this is the place to be.
You may want to conduct some searches, click on the magnifying glass, type what ever you are interested in and you will find a lot of information
I have been doing so since I relapsed in 2008/2009 New Years Eve.
This is a wonderful place for support, information, help with lab work, biopsy's etc. If you need help, people will be more than happy to help you.
In most cases, every question is answered with the same respect that everyone receives.
There are a few that try my patience however I feel no question is stupid. If you don't know...you don't know.
I hope you can get a biopsy to find out how much damage you have incurred.
My blood work did not indicate I was in cirrhosis so I don't put much faith in the blood work.
The biopsy is the gold standard.
Yes, you are correct 3.3 is absent perhaps towards mild fibrosis. "Normal" healthy people have same reading or worst.
On the other hand it seems that fibroscan is great to diferentiate between cirrhosis and non cirhossis but not so reliable in diferentiating between grades of fibrosis. It is said that cirrhsosis is over 12.5kPa. It is also said that fibrosis is progressing with a rate of around 3-5kPa/year although each one of us is different
Diana Donaldson aside, (to be honest the info is puerile, plus that she is redirecting to another site trying to sell some cheap stuff), healthy life style won't hurt and probably will not help either. I did not ever drink, been vegetarian for around 7-8 year, been on raw food for 12-18 months at time and still did not make any difference. You name it, I tried it, I am starting to think that all this alternative/complimentary approach is just another big load of you now what.
Stick with evidence based info (peer reviews, studies, etc) and check your liver with regular fibroscans (every 12 months). There is absolutely no doubt that you will have to treat at some stage, is just that for now you do have the time to wait for the new meds which will be much easier on your system
Keep in mind that hep c is not only damaging the liver but that is a systemic disease affecting many other organs as well. I appeared to be very healthy and that was praysed by my GPs only to suddenly be diagnosed with stage 4 lymphoma caused basically by HCV virus. Between chemo and treating hep c I decided that HCV tx is the way to go. If succesfull hopefully that will calm down my immune system as well and lymphoma will be in remission
Yes, there are side effects to this tx but I have been relatively lucky and I experienced only few of them. To be honest I was feeling worst before tx. At some level I feel better than before
Btw, I am a 1b, same with you
Stick around this site, is the place to find the latest in the treatement approach. I founded invaluable regarding the support (which your doctor usually won't give), understanding, encouragement, etc. Having some silly question answered put my mind at ease so my level of anxiety dropped and as a result I did not need the antidepressants or sleeping pills which are sometimes prescribed. It also helped me asking the right questions during my specialist visits.
With regards to your original question, this is the Hepatitis Social forum. It is a specific forum designed for people with Hepatitis to be able to interact in a more social way There is also a Hepatitis C forum which is a specific forum designed for people with Hepatitis C to discuss medical concerns, Hepatitis C treatments, clinical trial data, etc.
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