So far that's the way it is. Viruses are active or in remission. Like the chicken pox virus that comes back as shingles when you are older or under stress. Herpes is always hiding inside those who have had it. Hopefully, that will change in my lifetime.
not neccesarily. this is a topic of discussion that conjures up controversy and confusion. while many Dr.'s are reluctant to use the word cure, many are not. i recall a recent lecture by Dr. Deitrich on the Clinical Options slide presentation where he flat out called SVR a cure. there is another catagory of hep C that is intersesting as well, that is "inactive". which seems like the virus is present but not causing any damage. i don't know how this can be, and i would venture the Dr's don't know either. my dx was active hep C. there was no confusion in that.i guess there is always a chance of occult virus because the sensitivity of the tests are not 100%.but if the virus is und after several years, that's a cure to me.
This is a subject that is totally controversial. For every HCV doctor that says the virus is gone, eradicated, truly a cure...there is another doctor who calls SVR a sort of remission, or de-activation of the virus. Using terms like active or inactive virus, in people who have an HCV viral load is even more confusing, and lacking in any clear meaning. If you have the virus, and have a detectable viral load, then it is ACTIVE...whether or not it is causing great damage, or almost no damage. Most mainstream HCV doctors and researchers DO NOT refer to active vs. inactive HCV virus.
As far as SVR being a CURE...it may well be, but it also has to do with what your definition of CURE might be. The capital C cure would mean that you believe the virus is totally eliminated, eradicated, gone from the body, and cannot ever return. The small c cure would probably mean that the virus gets pushed to undetectable levels after SVR and is constantly held in check going forward by a newly trained immune system, and a minute viral infection at minute levels remaining in various compartments, organs, and cells in the body....thus doing little or no damage. Can it ever return???? The odds seem lower than 1% or so, and in reality no one really knows the answer to this question yet. As time goes on, over twenty or thirty years we will see if the SVR is completely durable.
Doctors and researchers fall in one or the other camp regarding small 'c' cure or large 'C' cure. More researchers seem to consider it a remission, from what I have seen....and more HCV doctors seem to be in the 'True Cure' camp.
Either way, the SVR provides major benefits, and seems to prevent the ongoing development of life threatening liver related issues in most people who achieve it.
The two negatives associated with the small 'c' school of thought are:
1. If the virus is in remission, and still present in minute amounts, then might it be able to return as a full blown infection is some people , under special circumstances???? No real answers to that one yet.
2. If the virus is still in the body, does it continue to cause low level damage in various subtle ways, or also, does it cause the development of autoimmune diseases, due to the constant struggle of the immune system to keep it in check?? No answers on the horizon yet for that one either....
I also think it would depend on one's lifestyle. By lifestyle I mean, what one eats, drinks, stress, environment.
People are always carrying things in them, take candida. Candida is present in everyone's system and we can't live without it, but too many antibiotics can trigger a yeast infection. Maybe it's the same with HCV. It's hangin' around, waiting for an opportune moment where it can flourish again. I would never have a beer again, or eat at mcdonalds, if you know what I mean. I've worked too hard and long.
I heartily agree with your assessment! Having been raised in a faith-healing cult that believed in no medical care of any kind and, as a result, having lost my little sister to untreated cancer when she was 7 and I was 8, I am, to put it mildly, EXTREMELY skeptical of the mind/body connection theory WHEN it causes one to lose sight of their common sense, which is what my parents did. I myself take herbs, have used acupuncture, massage therapy, etc., but operate under no misconception that any of these things, no matter WHAT I may visualize, is going to KILL the HCV virus. I get utterly furious when people imply any differently.
What a fascinating thread. When I was first diagnosed with HepC geno 1b in 1993, my biopsy revealed "no active disease", VL under 2,000, Grade 0/Stage 0. I was infected in '76. By the time my second divorce was over in '98, I had progressed to a Grade 2/Stage 3 and have been fighting to keep it from progressing to cirrhosis ever since.
So when I was diagnosed, obviously I was sick, but it didn't matter because there was no damage. I think of SVR and Cure in the same way: the virus is COMPLETELY eradicated from your bloodstream, never to return unless you are reinfected. I mean eradicated to the point that one can have total confidence that if transplanted, that new liver will be safe from any attack by the HCV virus because there is no longer any virus anywhere in the body to attack the new liver. Nowhere. Nothing. Nada. I don't mean to minimize the complexities and risks of liver transplant, infection by the HCV virus being only one of those. I often wonder how David Crosby is faring with his transplant several years back.
Hello, I was recently diagnosed 06/07, genotype 2, going on treatment shortly. I am 53, very healthy, they just stumbled upon it due to gallbladder problems and high lft's. I hate to sound stupid, but what is SVR? Is it Sustained Viral Response? I have been trying to found out how the treatment is going to effect me, have not heard anything positive. Has anyone had the treatment without getting really sick?
RE: Naomi, I know she underwent 2 rounds of treatment, and I do believe that you have to have a positive outlook, and try to remain calm and stressfree, so I agree with that. Thanks for listending.
Welcome. Yes. SVR stands for sustained viral response, aka "The Cure". We're all working towards that end. RVR means Rapid Viral Response, which we all hope to achieve by week 4 on tox. EVR = Early Viral Response. PCR test determines your viral load (VL). Geno 2 is easiest to clear, so you got that going for you. What is your VL? Did you get a biopsy? Do you know Grade/Stage of liver damage? Post your blood test results if you can, the ALT and AST along with the bilirubin is important to know as well. The folks here can answer most any questions you may have.
I can say that I have not been really sick! I was a rapid responder and only have to do 24 weeks. 1A. YEah I feel not the best some/most days but I have not missed any work because of that. Just keep trudgin on. Just did shot 17! what is your definition of REALLY SICK??
CNN:/ David Crosby’s poor health is being blamed as the cause for the cancellation of a planned U.S. tour with fellow rock icon Graham Nash. The singer had been reported as suffering from pneumonia earlier in February and the condition was blamed for the cancellation of an Australian tour – which
also saw fellow musician and long time collaborator Stephen Stills joining the duo on stage.
Crosby, 65, has had a long history of drug abuse and has had battles with hepatitis C. The singer also had a successful liver transplant in 1995.
His manager Donald Miller also issued a statement about the cancellation saying: "We deeply regret that the band will not be able to embark on this (U.S.) tour as scheduled. At this time, we thank you for your understanding and the band looks forward to seeing you this fall."
just so people might not get the idea that liver transplant is the cause of Crosby's ailments, it has been reported that he has a hard time giving up his old life style choices *post* transplant, it's been up and down with him..which is highly unfortunate of course.
illo, the flaw in your argument is that you can detect candida even it is not in an overgrowth stage. So it is not a pefect analogy to the cured state for hep c, or for hep c being UND after six months. My personal feeling is that after a certain amount of time, and I'm not cerrtain I consider six months long enough, but after a certain amount of time if the virus is UND, you are indeed cured.
I agree with you completely about judd. She and Jenny McCarthy need to get together. They've got a lot in common. I believe in science. Oh yeah, and drugs. The pharmaceutical kind. I don't have a lot of patience with those espousing (how many people am I going to tick off with this one? oh well) chinese herbs, or special vitamins, or anything else. In fact, half the time, what is supposed to be in those bottles isn't even really in there and they can be more toxic to the liver than anything else. Give me good empirical data with studies that can be replicated.
I hate to wade into this argument, as I have so many times before, but I think there should be some other sides that should be argued. You seem to be a really reasonable, intelligent person..... the type of poster who can "agree to disagree" and not feel threatened if someone disagrees with you - maybe not all of your points, but at least some of them. I know NYgirl for years now, and I know we can agree to disagree on some points -though we agree on many others- I think that goes for most posters on this board.
As for Naomi Judd - I think (and I haven't kept up with her for a long time) she did monotherapy for her Hep C, back when they were only giving out ultra high doses of interferon only, and she SVRed.
I know some others who took this therapy, back when there wasn't any combo therapy, and they have told me it was indeed brutal, perhaps more so then the combo therapy for some people.
Judd feels that some other things she was utilizing helped her reach SVR as well, prayer, mind-body wellness, visualization, etc....I posit that there probably isn't any possible way that anyone could completely dismiss all of her arguments and beliefs, or quantify or verify them with a lot of accuracy or precision.
"Science", such as it is, is just not that advanced in some of these areas, though I wish it were...maybe in years to come they'll have more verifiable data on these issues...but I've seen Ivy league trained (Harvard, etc) psychiatrists, various disease clinicians, etc...talk about these topics.....and many of them do not completely dismiss these modalities, and add "possible" weight to them, as far as studies, etc.
The human body and wellness and disease are extremely complicated issues. If anyone would like to see very qualified groups of scientists discuss these types of issues, you can go to the "Charlie Rose Show" archives on the PBS website, and pick some topics out. Really informative and entertaining.
As to your contention that supplements, herbs, Chinese herbs, have little to no value, and if anything might be highly toxic, well I agree and disagree with these premises as well.
I really think that if you're going to live with the disease, say, maybe you have to because of your disease state, non-responder issues and relapser issues, etc...there are some supplemental regimens that could be of value to certain patients, but, just like with the conventional medical treatments, they don't seem to work as well for everybody. We're all different in the way we respond to things, generally speaking.
This is very complicated, because you have to go to reputable people (and yes, of course, not everyone is reputable, there are many snake oil salesman) and reputable companies, of which there are some. I take these regimens only to help out with immunity issues, and for overall health and inflammation issues.....
I have never taken these things with a view to eradicate the virus, a fool hearty ambition if there ever was one. I contend that if you go to reputable people, preferably MDs, qualified nutritionists, etc and stick to the reputable companies for the supplements, etc, you have little to fear as far as toxicity issues.
Now are they effective? Depends on the individual as I said. I have personally heard of people here saying that if anything these things kicked up their liver enzymes, etc...maybe the modality they tried was not good for them, and maybe something else could be more effective for them, or at least help.
Maybe they were ill-advised and took way too much for their systems. I think this happens a lot. I always "titer-up" with anything I use, using it by itself for the first few weeks or so, then get tested, etc...to see what is exactly doing what. Most people aren't going to be this scrupulous in testing things out, and they may just get "over-the-counter" substances, or go to people who are not very experienced in advising them.
If you look at it, many synthesized pharmaceutical medicines are from natural plants, etc.. so just because it grows in the ground naturally, does not automatically mean it's ineffective.
I myself have lived with this hitch-hiker for many years now, and have had hep c for over 30 years, but I have low liver damage, and continue to have excellent labs. How much is of this is due to my genetics? my diet and lifestyle? my regimens? who can tell. I will say that once when I got off my regimen, my alts did go up, started back on my regimen, my alts went down to normal again, but that could of been for a few other reasons as well, like stress.....but I'll stick with what seems to work for me.
Though I am tired of keeping up the ship, and will be treating soon, to try to eradicate the virus all together, with conventional meds.
But if I was a person who did not respond to conventional meds, and was a relapser, I'd - by all means - look into regimens that might help the immune response, and possibly cut down on inflammation in the body, no question, but that's just me.
As to the toxicity of supplemental regimens vs. pharmaceuticals and conventional modalities, you can't even compare the morbidity rate to pharmaceutical meds, and treatments. With herbs, etc...(and yes, some from Asia, elsewhere, can be laced with some nasty elements, etc. This is all about reputable companies, and there are some) supplements, you might find less then a handful of people who have died from these things, relatively speaking. Probably many more people just had a bad experience. Anyone can look this up this data for themselves.
As for the "Science" of pharmaceutical meds and the inferred reliability and safety over alternative therapies, etc... What, just Vioxx killed like, 30,000 people? My mother always had low to normal blood pressure, one week of Vioxx and she was kicked up to high blood pressure, and she'll have to take bp meds for the rest of her life most likely, but she's not the litigating type.
There are many deaths in hospital settings, meds therapies, a whole range of things. It's in the tens of thousands, per year, just in the US alone. I hesitate to say all these things, cause it sounds like I'm giving US medicine a big bad rap, but these are just the stats.
But they are the only game in town, or the best game in town, for many things, and I'm really grateful that I have access to them, as a US citizen. Doctors and researchers cure and help so many people here, they are only to be commended for the most part. I'm just pointing these things out for clarities sake. Respectfully.
At the risk of being repetitive.....I have seen 'regular' Dr.'s for YEARS. endless blood work, etc. For the last 2 years, getting sicker, I went over and over complaining of , what is, hep symptoms, problems. Endless reports of high Alt's, Ast's, ( I have 8 years of back BW) and endless answers of 'oh your fine, look good, weight good, bp good, your 'depressed' and so on. (NOT at all depressed, good life!) I saw 4 different Dr.'s just in 2006-2007.
THAN, went to acupuncture, eastern med, Dr. FIRST exam-NO blood work...."something is wrong with your liver!". We THAN FINALLY caught this hep c I have carried over 30 years. She put me on milkthistle, a few others while getting me into one of the best at Shands. She works WITH him to treat me and she sent me there. She also made it clear the only shot of ‘cure’ is standard med’s we’re doing. My 1st labs at Shands-after weeks on milkthisle- lower Alts and 812,00 VL. Trial study made me stop milkthistle for 30 days before tx and next BW- higher Alts and over 4 mil. VL. While treating with just her, I felt the best I have felt in years . Other methods can not be discounted in handling, helping with hep and other issues. She works with and believes in using both to cure and my 1st mention of not doing the inter-riba she said "you HAVE to treat'!! And there are studies that show acupuncture DOES help sides with chemo. Many things. Eastern med has been around a long time, folks! As forseegood said, ONLY through licensed, reputable source’s. Do NOT order cr*p off of the internet nor ever self treat with herbs, etc. As with approved drugs, medicines, that can be dangerous.
Pretty much agree with her whole post.Even with 'imagery', etc. studies have shown patients who practice it with treatment do better, cure better. And think about it, your just putting a lot of positive thought into your brain, surely better than negative and just worry!
Footnote! Barbara (my acupuncturist) is also doing my shots with me, I did it but she's with me to do if I need. I went today to see her, feeling horrible for the 1st day since starting tx only 1 week ago, to do my 2nd shot. She treated me.... I am out of bed and doing stuff for the 1st time today! Also helps so much with the anxiety part of all this .Point of this long post.... 8-10 'Dr's couldn't figure out what was wrong with me, she did! Has to say something for the 'non standard' methods.
My 2 cents again :}
Of course there are hospital deaths. Stupid people, as often as not, work there as much as in any other industry. And/or if not stupid, people who are just coming to work to collect their checks. There are noble people in medicine, and you also find the ignoble. Regardless, your health is never as important to them as it is to you. Aside from your family, your health is not going to be as important to anyone as it is to you. You have to protect yourself when you go to a hospital, have a family member with you, and constantly question. Which is what I advocate doing with doctors as well. This, however, has nothing at all to do with the underlying science. It's more like "operator error."
I do believe that there is the provable and the unprovable and if people were being cured with chinese herbs, trust me, the pharmaceutical companies would be grabbing those things up like crazy and they'd find a way to package them as medications and to patent them. Upon further research, Naomi Judd is, to her credit, at least advocating the combination therapy nowadays. And certainly, the fact that she is advocating good nutrition and exercise can't hurt anything, healthy people are obviously better off in any regimen than unhealthy people. But the rest of her mind body thing is, I believe, hocus pocus. My bombastic, domineering old aunt polly lived to be 99, almost 100. Erma Bombeck, sadly, died all too young of cancer. Now THERE was a lady with a great outlook right to the end. You can't think away your illness.
We don't get cancer in my family. We do get high blood pressure (on my father's side) and migraines (on both sides - gee thanks folks). Genetics. Pure science.
Are there some pharmaceuticals put on the market that turn out to have dangerous side effects? Absolutely. Largely its due to the expense involved in testing every demographic group, which would be the fail safe method in research. But by far, pharmaceuticals have saved more than they have damaged WHEN prescribed and used appropriately. Both of those things also rely on human beings, who are prone to error. Again, this is why patients have to be SO educated about their health concerns, the drugs involved, etc.
I never said, and dislike my words being mischaracterized by the way, that anything grown in the ground is inneffective in any format. That would be ridiculous since many pharmaceuticals including painkillers, derive from plants. I said that herbs and vitamins don't cure hepatitis c and they can, at times, be toxic. That is an absolutely true statement and it has been proven. And I categorically reiterate what I said before about there many times not being the same things in vitamin supplements as are said to be packaged. Who is to say which companies are deemed reputable? We are talking about regular stores and drugstores here where they have tested supplements and found problems in the majority of them.
When you are talking about the masses out there, looking for treatment for hcv, and cancer and other serious illnesses, these quacks misleading them with promises of cures when they are not, in fact, effective at curing the illness, is nothing short of monstrous in my book. And they don't give these herbs and bogus cures away for free, do they? No. They charge these desperate sick people for cures that don't work. Personally, I think God has a special little place in hell waiting for them. So yeah, I guess I agree that we disagree.
Much the same early childhood family religious experience here. And my brother had absolutely the most severe adhd imaginable. It was hellish. So we all ate this diet completely devoid of any preservatives, dyes, unprocessed food, no sugar, etc. Not that the diet hurt us I'm sure, but neither did it do jack for my brother. He failed miserably at school and socially but due to my parents beliefs they refused to seek treatment. Years later when my son was born, it became apparent fairly quickly that he also had fairly profound adhd. After he was suspended from first grade (yeah, they can really do that) I took him to an adhd specialist who put him on adderall. It was a night and day change. He graduated this past year with an advanced diploma and is in college now. But the best part was how differently people treated him when he wasn't skyrocketing all over the place and how it boosted his self esteem. He didn't have to go through the life my brother did. And none of the horror stories people told us about adderall came true. My son is a perfectly healthy 19 year old. I can't imagine losing your sister though. I'm sorry.
.." I read that she said that she is in remission but will never be totally rid of the virus."
Double dose answered that pretty well and to add to it, many researchers are expanding the way they think about "cures" especially as they pertain to viruses. Many doctors have in the past simply called an SVR a "cure" but since HCV RNA exists following SVR some scientists are being a little more cautious and qualify the meaning of cure more now. The stats show that once SVR is attained there is a very low relapse rate. The term "remission" is sometimes used to to convey that there may be things that one can do which could threaten that status.
I don't see that Naomi Judd has done much to deserve some of the bad press she gets from people. She has raised money, donated time, brought some awareness and education forth about HCV. She's done as much or more than most infected folks that I can think of.
From her site (this was from about 4 years ago) she had posted;
"During the past decade of studying all the ways we can heal, I've discoverered eye opening research. Patients most likely to survive a life threatening illness or other life crisises are found to have these characteristics in common. I encourage you to incorporate them into your daily activities.
3) Support systems
4) Spending time in nature
5) Managing stress
6) Eat healthy, taking vitamins/supplements and excercise regularly
7) having goals and a purpose
8) Keeping an open belief system"
I don't consider these to be radical or contrary to common sense. I'd encourage any of you to explore and decide for yourself what she has to say. It seems to me that many of these I also see in various forms on this board. Indeed, this board is a "support system". Remarkably, I sometimes hear doctors tell their patients to "stay off the internet".
Willy (off topic, but my father's death may have been related to his Vioxx use)
I agree that (after further research) she appears to donate a good amount of her time to raising awareness of hep c. and that's great. I don't agree with anyone advocating vitamins or supplements without a doc's specific knowledge and advice while having hep c. a sense of humor certainly never hurt anyone, I just don't think its clinically significant.
I am a little leary of all of the anti-inflammatory meds. It seems as though so many people have problems with them, and not just with Vioxx. My grandmother almost went into renal failure due to ibuprofen, apparently she can't tolerate it and never knew it. She was hospitalized for a weekend over it. At any rate, many people seem to have stomach issues and different things with many of them, if not the more serious side effects that Vioxx rained down. So with my own history of medical issues, I just find it wise to stay away from them. Sorry about your dad.
sometimes when posting, things get lost in communication. I never said that you said anything about things being grown in the ground, etc. That was just a point *I* was making. I also stated that none of these things would *cure* hepatitis, in other words, make you svr.
I am only saying that they can help certain people in terms of inflammation problems, which, in turn, can help make them feel better in terms of symptoms. (There are many complicated processes that I'm not qualified to speak on.) This has been true for myself, and many others who post on here and at other boards. Feeling a bit better means a lot to me, though of course I'd rather get rid of the critters entirely.
I did acknowledge that some people sell snake oil, or very much exaggerate claims about their products, and what they can do or not do for you. There *are* certain reputable companies, where you can be assured they put all the ingredients they print on their labels, Life Extension is a good one. Anyway, agree to disagree is sometimes best. hope youre well.
We really do just disagree on this point. They have done studies on chinese herbs and hep c, I provided a link discussing a few of them. I am going to repeat my point with a revision since I conceed that I did not respond to your exact point in the last post. IF chinese herbs even gave any great relief, much less a cure, from the symptoms of any illness, pharmaceutical companies would be crawling all over them like flies trying to make a buck. They would much prefer to take your money than to have you give it to the individual selling the supplements. And the only reason they can't do that is that they can't show, in any study that they can replicate, that it's really helpful.
Again, I think any relief from acupuncture and from much, not all, but much of the herb taking is all in the head of the person undergoing that particular brand of what I like to call - quackery. And I am not very good at lying to myself. But if you can hypnotize yourself into believing that its working and it helps your symptoms, then that's great and I hope they aren't charging you too much.
IF chinese herbs even gave any great relief, much less a cure, from the symptoms of any illness, pharmaceutical companies would be crawling all over them like flies trying to make a buck. They would much prefer to take your money than to have you give it to the individual selling the supplements. And the only reason they can't do that is that they can't show, in any study that they can replicate, that it's really helpful.
Pharmaceutical companies are not interested in herbs because they can't make money from them simply because they already exist and can't be patented. Therefore studies of herbal tx will not have the benefit of large infusions of cash enjoyed by synthetic concotions which is a shame because maybe, just maybe, there's a herbal preparation that cures HCV with few sx but we'll never know b/c it takes too much money to study it.
As for acupunture, even the conservative medical establishment is recognizing the efficacy of this age old therapy. I guess you could try the "quackery" as you call it and see for yourself but there's always the chance you could hypnotize yourself to believe that it didn't work when in fact it did. It works both ways, does it not?
I know you don't mean to sound condescending. I have many friends that have gotten relief from symptoms, not just from herbs, but other supplement therapies. My hair was falling out at a kind of alarming speed, someone told me that biotin worked for this, so I tried it. My hair didn't fall out so much after about 3 months of using it. I perhaps had a deficiency there and the biotin worked for me. I have a friend that has OCD, his psychiatrist told him some vitamins he might take, and it relieved his symptoms somewhat, didn't cure, but lessened them. Perhaps a deficiency there too.
Some of the things I took to relieve symptoms didn't work after I tried them for awhile, others did. Why does the "placebo" effect work for some things, and not for others? It seems my placebo effect is a little picky. And if what your positing really is true, that I got some kind of placebo effect from my regimen and felt better by hypnotizing myself, then that kind of puts the kabash on your theories that there isn't any validity to mind-body connections, doesn't it? Placebo effect certainly falls under the category of mind-body effect.
My liver enzymes actually went up once I got off my regimen, then went back down once I stayed on it. Those are labs I'm talking about. I have great labs. So I stay on it, and I don't take a lot of things. Figure why change it.
And no, drug companies don't make a lot of money from vitamin c, not like they do from a statin drug where they own a patent, so there's no real incentive to fund very expensive studies and research and development on a substance that's pretty much available to anyone.
I just don't look at things in black and white terms, because I feel there is so much we just don't know, thats including researchers and scientists.
To me, it's not very productive to just put everything in a category of "quakery". Vioxx was scientifically studied before it was given FDA approval, so were a bunch of other drugs.
Patient populations have to be soooo huge, with so many different controls....and ideally, the study researchers should be able to change protocols if need be, dosages and combinations, when they barely have the money to study one particular protocol or control group. That's a big failing with many studies, particularly with these little, almost negligible studies they've done on alternative therapies.
BTW, I completely respect your opinions, I just don't agree with all of them. But this is an interesting debate, at least to me, lol...be well....
I got this list from my liver clinic when I first strated tx - Meant to post it on the boards and forgot - Any way - Why argue over is it good or quackery - Those are just personal opinions...If you have liver disease or are being tx for HCV, or in the watch and wait mode PLEASE do not take anything off this list for it can be TOXIC to the liver
Camellia sinensis (concentrated extracts of green tea)
Jin bu huang
Oil of cloves
Red Peony Root
hi sweetie pie gurlie girl!! how's everything in LA? I was wondering about the gal you took in and low and behold I saw you post about her today...Sounds like the same scene as a year or so ago - Teens are a handful - You're a doll for taking care of her - Bless your heart
And again....'quackery' saved my a** as I am stage 3 fibrosis and had I NOT went to the acupuncturist that DID figure it out and had kept going to Dr.' s(that make as many or more mistakes than the da* 'quackeries' do)....I would be in cirrhosis in @ 5-10 years...and I didn't drink much! Had these so called professional DOCTORS found this 10 years ago, I may very well not be stage 3 as I would have, as I did upon finally getting dx, , immediately change my lifestyle. I went to this woman quite skeptical, of her, not the practice of, and never having met me, no records to go by, she hit TWO problems right on in her first exam, that MANY Dr.'s missed for years. The mind IS very, very powerful and can make or break your attitude, outlook on life, what you get out of life, help in healing, handling EVERYTHING and rules your life. As for the feeling better is ‘all in the head‘......NOTHING the 'Dr's' ever gave me made me feel better, short of valium, xanax or other HARMFUL drugs! MILKTHISTLE DID and is studied and proven to help the liver process toxins. I am one tough a**, strong woman , educated with lots of common sense, while very open minded. NOBODY can put ANYTHING in my head! To totally discount anything but our so called 'modern medicine ' is absurd! To not realize and know that the pharmaceutical world/companies base ALL their studies on ONLY what they can PATENT and make billions off of is ignorance. That is proven everywhere. Christ, look at their mark up on med's/procedures. ( I WILL find that article to post here!). While modern med./drugs are helping, curing, there is a LOT of problems there! As someone above posted...many 'drugs' have natural, herbal ingredients but are only researched , marketed IF they can be patented. Hormone therapy alone.....using herbs that are proven to help, much less harmful or the marketed , can be very harmful standard treatments?? C'mon....research all this better. True to watch what you take with hep (and thank you PSP for that list), but also true to watch what prescribed drugs you take.ALL can be good, helpful....DONE RIGHT! ALL can be harmful, done wrong and quite often, both together can help more. My sister is terminal BECAUSE of one ‘professional Dr.’s MISTAKE! No if, ands, but's...HIS mistake.
Both my hep Dr. and my acup. Dr. are both open to help from both tx’s. I would not go to one that was not or that pushed only their’s. This Chinese med Dr. immediately sent me to Dr. Nelson, immediately pushed for the inter-riba tx., while stating she can only help with the sides, fatigue, etc. and that I can not do her herbs while on that tx. Only moxy and acupuncture. And it DOES help. Anyone that won’t even consider using both could be short changing themselves and they could be suffering less!
Our ‘modern med ‘ system has 7 year olds on Ritalin, prozac, when-PROVEN- simply changing all the cr*p their parents are feeding them could help. It has half the country on med’s they really don’t need.
Look at mine, for what was my hep symptoms they wanted to give me depression med’s. I have NO signs of depression, was not depressed and have a great life! And sadly, half of what women go in for is so quickly labeled depression or anxiety! That TOO is proven!
In treating with Eastern, Western, Jamaican (lol) ANY meds is the same as buying a car from ‘Joe rotgut car lot “ or Ford, or buying canned good’s dented at the bargain store versus not. The source , the knowledge, the research, the back ground. I wouldn’t buy my drugs or ‘miracle cure’ online from Mexico, nor would I pick an herb from my yard and do it! (well, maybe the Jamaican ones .:)JOKING, no thread needs to be started here! :}
And as for 'charging you to much'...Good God, and how much is our tx., visits, other meds? I pay for 1 visit a week ($50.) she see's me as many days as I need/want to go in. She stays open later to do my shot for me/with me , for free ( just because I was nervous to do them.) She treats my sister totally free and has made it clear to me that if I miss work, can't pay...do NOT stop coming in!
Whew, don’t get me started on these things! See what happens!
P.S. And agree with Wille on Naomi Judd, what has ol' Tommy Lee and Pamela Anderson done for hep ????
Besides her comment that avacados are saving her!!
Wore myself out, taking a nap...or I may run over and get some moxy/acup. and get some energy :}
Must add..... yes there are many, many 'snake oil miracle cure' sick S.O.B.'s that abuse and make money off of sick people searching for help and that's in the category of the 30 yr. old getting the 12 year old on crack! Sick, horrible people, so very much agree with your comment....
"They charge these desperate sick people for cures that don't work. Personally, I think God has a special little place in hell waiting for them."
I have seen and tried acupuncture when I was much younger - at length because I wanted to really give it a chance. Absolutely nothing. A large bill at the end of it though. Trust me, when you have migraines, you are open to just about any suggestion as to how to treat both the headaches themselves in terms of number of headaches you have and the pain they cause and you really want to believe it will work. I tried it again for my back after a car accident with a different practitioner and it didn't do anything for me then either. Early on, I tried different herbs for my headaches as well. They also didn't do anything to lessen either the pain, or number of headaches I got. Pharmaceuticals, however, have helped me significantally with some difficult medical issues in ways that let me lead a more or less normal life.
And I didn't mean, of course, that pharmaceutical companies would patent and sell herbs. If tests which could be replicated showed them to be helpful in relieving symptoms, or in curing major diseases, the drug companies would isolate from that plant the part that was effective for treatment, as they have with other medications, produce their own formulation, and package it as a pill, which they would patent. So I have to think they don't see these herbs we're discussing as anything that would pan out. And there have been studies, upon which I believe, had they been successful, the pharmaceutical companies would have taken interest.
In the end though, if you aren't doing anything toxic, or foregoing treatment that would actually cure something in favor of an herb that doesn't, then in my opinion, if you think they are helping you then they are helping you. Since pain and discomfort are subjective, if you feel more comfortable on them, then you are more comfortable on them. I just don't think there's any scientific basis to it, even though researchers have tried, in the case of hep c, to investigate that issue. Because I'm by nature analytical then I feel that if it can't be shown to help in testing, but people have anecdotal evidence that it helps with either viral loads or side effects, then there's a good chance that the viral loads are reacting to something else, or to nothing at all, because simple correlation doesn't equal causation, and if it can't be shown in scientific studies to reduce sides, then it is for me, more likely to believe that positive anecdotal evidence in this area has something to do with how the individual thinks the herbal treatment or acupuncture will work. And its just my view.
And if there ever are studies which show some of these herbs to be helpful, my view will change because new facts will be in play. Its kind of like this. I don't believe that UFO's are visiting the earth. However, if one happens to land in my yard tonight and it sucks me out the window, returns me back again, and my son captures the event on camera (so I have evidence that I'm not just hallucinating) that would certainly change my view vis a vis the UFO's.
And all that really means is that I may be a really sick puppy here pretty quick as I start treatment and I don't believe herbs will help with my sides so I'm kinda sol...
Its funny you should mention that, I was just thinking that in the car today - Pam Anderson's such a huge asset to PETA, I wonder why she hasn't done more for this cause. I mean, she announced that she had it to the world so its not as though she has to worry about the stigma. That thought was quickly followed by all kinds of other intrusive questions that I never would have even wondered about before I found this board, like, I wonder what her genotype is, wonder what her viral load is, wonder if she's had any extrahepatic symptoms? LOL I sure wish it was true that avacados were the treatment of choice for hep c. I love the things.
think we talked the other stuff to death, but like I said, individuals respond differently to just about everything.... but I would just like to answer some of your questions about Pammy, to the best of my knowledge...she was outed from a staff member at UCLA, she didn't want to come out with this, most artists, professionals, people, etc just don't....this disease, I think, has more of a stigma associated with it then AIDs, and that's saying something...I think there are a lot of reasons why that is so, which I won't go into here, and we've all discussed that ad nauseum too, though I'm sure we'll have more discussions...
Anyway, she had a 0 on biopsy, from what I know, and perfect labs (she probably hasn't had it too long though, saying she got it from a certain somebody, who swears he doesn't have it, (yeah right)...and it hasn't been that many years since she was with him...
She did make attempts to speak up about it in the beginning, but she got such a load of hate mail, from people who didn't have this, and from people who did, so she just gave up, guess she could tell where she wasn't wanted...whatever you think of her (and judging by some of the choices I made when I was much younger, I don't have much of a leg to stand on in judging her, lol)
I think she does do a lot for animals, (too bad she has such a proclivity to date so many..yuk yuk, nudge nudge...) And anybody who helps out anything out these days, scores some points in my book...She has decided to put off treatment and ironically, just uses vitamins, herbs and is a veggietarian, so I imagine her diet is pretty darn good...I feel she can afford to wait...talk about another controversial issue, he he he....hope youre well...oh yeah, she was tipping the grape, so to speak, but she says she's given that up now...
well, i was illustrating a point...but you'll see many people coming out with AIDs on talk shows, national TV, all types of PR situations, and because of the efforts of the gay community, various Super Stars, etc...you'll see a lot of sympathy for people with AIDs.....
perhaps I should of said you'll see more sympathy and caring....acknowledgment.... for people with AIDs...where do you see this for people with Hep C? unless I'm missing something...
I just watched a episode of MAD TV the other night, I love MAD TV and I still do, but they had a skit where this guy had hep c, and he joked "hep c is the "bad" hepatitis to have, the one that Evil Knevil has, so I need a new liver"...it got a big laugh...as far as I can see, if this does get any press at all, it's mostly a bad joke...AIDs gets far more respect, dollars and sympathy in the national and world press...my opinion...
I understand what you're saying but I think you might see if differently if you had AIDS. Perhaps being male colors my perception but, even in the enlightened(?) era that we live in, here in America homosexuality is a huge stigma and AIDS is associated with that and IV drug use. So, I think it wins hands down when it comes to stigma despite the attention and money it gets. AIDS is associated with everything that HCV is - plus homosexuality. Mike
once again, these issues have so many facets to them, that points that ostensibly seem contradictory, aren't in some respects...pound for pound, I just think that AIDs gets a lot more positive press, whatever the stigma of both diseases...and with that good press, a helluva lot more donations, time donated, etc...yet in the US alone, many more people are dying directly and indirectly from Hep C...I think there is something odd that has happened recently, in the fight for "sickie" dollars...I've seen formats where these issues will come up, and the advocates for AIDs are so organized, vocal and pro-active, that if you just intimate these inconsistencies, you'll get a kick in the head for your efforts...
guess we are too diverse a patient group, that we don't....or can't....organize like the gay community, and become one solid, monolithic block advocating for our cause, with our own highly organized public relations machine, etc...I think what's beginning to happen is a numbers game.... the sheer number of people coming down sick with this, and many getting government aid in the process, is beginning to force the issue.....big pharma knows about it, finally, and they are working on the big fix... but it's sure been a long time coming, and that's why I think there is such a need to huddle together on these boards, who else gives a sh*t about us?
Yep... her comment was 'I'm eating avocado's and getting better"!
No offense to all you intelligent blondes out there, but she gives blondes that 'ditz' reputation.
Now I have to look up her geno.and all, curious one that I am! And Tommy Lee had said that tx 'put me closet to death I've ever been' so wondering his type and tx. now. (Is curiosity the same as plain nosey:)?? But for such public figures.... Nothing else out of them!
I also don't really buy they got from tattoo's either, but thier choice what to say.Didn't run out and buy avacado's tho:} ....(do like 'em and they are supposed to be good in our hep diet.)
hmmm...maybe I'm wrong, but I thought TLee has always contended he didn't have this, wink wink.....are you sure you might not be getting mixed up with Steven Tyler? he made a comment like that about TX...I mean, I'm not losing sleep over these people..well, that sounded stronger then I meant, but you know what I mean, my heart goes out to anyone with this disease, anyone...but if youre a rich celebrity with a butler, it might be a little easier then for the rest of us shmoes...you can keep your butt on the sand looking out to sea, and just order room service...
I try not to judge which ever side somebody takes to treat, it's a personal choice. I choose not to do the alternative route, that's my choice, somebody else may choose to do only alternative meds, that's their choice and still another person, may choose to do a mixture of alternative and traditional that's their choice. It's not my place to say one is right or one is wrong.
I AM getting room service :} !! From my kids and man :} Spoiled little thing I am.
Thanks for saying I don't seem to be a ditz ! Between hep 'mental inclarity' and tx oncoming brain fog, was thinking I may dye the hair blonde :} Course than I'd have to get the bo*bs :} Course than I may end up bald with big bo*bs? Least they'd know I'm a female :}
(okay, okay...no more blonde jokes!) I was a blonde for Halloween one year...do NOT look good blonde! (I'm indian looking, sorta).
And yep, you may be right.... it may have been Tyler?? But I'd thought Pam A. got it from Tommy L.
Jeeezzeeee..... we need a life , aye?
Well, said. Us more opinionated ones (that would be me:} must learn to just tell about other methods, our own experiences and let all choose on their own. Just wouldn't want anyone falling for 'snake oil' rip off's nor thinking there is any real 'cure' other than what is proven, which we're all trying (tried).
Too late. Did the boobs last October. Start tx tomorrow. May REALLY END UP bald with big boobs. Oh well, you know what they say, "Bald is beautiful... especially if everyone is looking at your boobs anyway."
if you clear the virus, meaning they can't find in 10 viral cells in a ml of blood, you are now considered cured, according to my hepatologist.
that the medical community now calls this a "cure" not a remission is actually a big step. It means your chances of living a normal life go way up.
It is also true that the liver is the most regenerative organ in the body, replacing all it's tissue every 18 months. therefor most fibrosis, stages 1,2,and 3, are reversable. As soon as the virus clears, the fibrosis should slow and eventually be replaced with new healthier tissue. The actual cirrhosis nodules (full of grisle and fat) don't reverse but remain, but asumming you aren't in an advanced state of cirrhosis you should be able to return to health, provided your immune system cooperates with the treatment.
You must be completely diligent with the treatment for a chance of a full cure.
After this or when (or if) this is all over, I want to go on that show "Extreme Makeover! (Is that show on anymore?) I really would..actually I'd rather get an an anonymous donation for a complete makeover!! Any millionaires out there who would like to donate to Yvonne's Wish Foundation? hehehe.
Regarding alternative meds...when I lived on Long Island, I used to get accupuncture done regularly. I started after my 1rst Tx...(clinicals trial) Interferon IntronA 3 x a week. I went for detox purposes and got much more. My accupuncturist was also going to school to get his NP degree (Naturopath?) Anyway...I felt fantastic...energy wise...it helped me stop smoking....Also, after feeling like a lab rat with a number...I was treated with such kindness and care. It was an awesome experience and I recommend it to anyone. After a treatment...I would feel so incredibly relaxed, my muscles joints and bones felt like rubber..It was better than any massage! My accupuncturist cared only about helping to heal my toxic body...cared nothing about money. I will always be grateful to Norman Suhu of Glen Cove, NY...he was my angel.
I couldn't help but notice many of your recent posts, I really admire your scientific thinking and clear mindedness on so many issues. I guess I'm trying to say I like the cut of your jib, and honestly it has nothing to do with your boobs! (remember I can't see (@)(@) them!) Just kiddin', but seriously do you work in the sciences?
thanks. my educational background is in pyschology, I stopped with half of my master's complete when I got divorced, and that's where that stopped. I think I was taking marriage counseling at the time.... And psychology, as any real scientist will tell you, is a soft science, so its kind of funny that I like it so much. I worked in social services for ten years as an investigator and I've been selling poultry since then. I design and sell chicken tenders to distributors and restuarants, that sort of thing. I probably have much more in common with a lawyer than a scientist in the way I think. I've had health issues for a long time, although fortunately only the anemia is anything to keep an eye on. But for me, with medical issues, or anything else, I like to understand everything I can about it, and then draw off what seems to be the current best protocol, go for a cure, and if not, find the best thing for symptoms.
I can't can't cure my migraines, but I take a couple prophylactics which help, then I can treat symptoms. And although I can't cure the anemia, I can treat it, so far, very effectively - since procrit was brought into the picture. So, hey! This may be the first potentially bad health issue that I actually have a shot at doing anything permanent with! lol
My mother suffered from migraines for years, headaches 24/7 and nothing helped. Lately the doc put her on 25mg chlorpromazine at night for her anxiety, (better known as thorazine or largactyl). Within 3 days - no more headaches - completely gone! The doc didn't prescribe it for her headaches but it sure cured them. Apparently it's an off-label use of chlorpromazine. 25mg is the smallest dose. You might get away with one every 2-3 days. It is not an analgesic and the mechanism of action is not well understood, but it has been a blessing for my mom.
My friend who I see on a daily basis for over 7 years suffered extreme headaches if not on a daily basis at least every few days. He lived on excedrin and hot chili peppers. Anyway, when I started tx..I complained about having to drink so much water. He pooh, poohed that and just to show me that it was no big deal...started drinking more water than me. Well the side effect of this for him (other than hittin' the head more often) was being free of headaches and sleeping better. It was incredible..he is now a firm believer in more water consumption. There were a couple of days when he went without...and don'cha know.....severe headaches came right back.
actually, drinking a lot of water is helpful for the headaches, and the liver, and this tx. But it does help me. Also, to dointime - haven't ever tried the thorazine on a prophylactic basis but whenever I do go to the ER for a pain shot with phenergan I find it helpful to ask them to throw a little in there. I may ask my doc to let me try it on a trial basis as a small nightly dose.
Of course, I am WAY polypharmacy already, so I kind of have to consider what new to add. Sometimes if I add a scrip, I try to remove another after to see if the new scrip helps better alone or if I still must take it in conjunction. Bazillions of daily meds are a pain, expensive, and I always have to worry about the interactions and potential toxicity for kidneys and liver. Not that any of that stops me. lol
There are lots of different views on this, my personal one was influenced oddly enough by a philosophy module in a pyhsics course I took at University. I guess you can immediatley tell from that the bias, but the key things I learned were:
1. People want to believe they are special, and that special treatments will work for them. The classic example is the astrology study, where a University students were broken into groups. One group was asked to give their birth year. Another group was asked to give the day of birth. Another was asked the hour of birth. Each person was provided a personalized astrological reading. The group that provided year only agreed a little with the reading. The group that provided day, agreed about 60%. Something like 80-90% of people in the hour of birth group agreed with the reading. The funny thing is, that the astrological readingings were all choosen puerly at random from a star signs book. We want to believe in this stuff, so we do.
2. Before modern medicine came along, if you go back 100 years or so, the average life expectancy was less than 40. No amount of traditional herbs, or other treatments, worked. It was only when we started getting vacines, anti-biotics, etc., that life spans started to raise. Whenever someone says it is a traditional medicine, step back, and think to yourself, well, did it work for the ancients? Sadly the answer is no.
Final comment, I have no problem with people trying alternative remidies (I don't like seeing people use Acupuncture though, as my father in law caught hep C from acupuncturre). We want to feel special, and if it makes us feel special, then fine. But, in saying that, giving up on modern medicine is really not that bright, unless you want to go back to average lifespans of in the 30's.
Life expectancy in 1900 was 47. Now - contrary to many people's assumptions - this does not mean that the average person could only expect to live to 47. Infant mortality was tremendously high in those days. My parents, for example, who were born in 1919 and 1920 respectively, both came from families with 4 children, but only 2 in each family survived childhood. So those early deaths were factored into the actuarial tables.
I've done a bit of genealogy and was quite surprised at the number of octogenarians we had going back to the 18th century. Actually, the life expectancy of a 50 year old in 1900 and a 50 year old today is not very different: something like 75 versus 80. The trick in the old days was making it to adulthood; once one did, longevity could be assumed.
Recently there's been all sorts of propaganda advocating that the government should raise the eligibility age for social security. Proponents often state that people in the 1930's only lived a few years beyond the age of 65 and that now we live for another 20 years. That's just not true. Yes, we do live longer, but not that much longer.
The stats depend a lot on which country, race, etc, but you are right, 100 years was not in the 30's (my mistake).
Why was infant mortality so high though? Why the great change in the 20th century? Do you think it might have had something to do with all the diseases that existed? Or the lack of proper doctors? Seems acupuncture didn't stop people dying as children in the 1800's. Even talking to my mother, she tells stories of growing up, with school being closed because kids have got Polio, or other illnesses.
"Historic Life Expectancy
During the Roman Empire, Romans had a approximate life expectancy of 22 to 25 years. In 1900, the world life expectancy was approximately 30 years and in 1985 it was about 62 years, just two years short of today's life expectancy."
Depends on what stats I guess:-) I wouldn't have like to live to only 30 years on average though.
1) "We want to believe in this stuff, so we do." I assume you are talking about alternatives but of course the same psychology also applies to what we call "modern medicine" : ) : )
2) "if you go back 100 years or so.."
Which would be about the time that (what they used to call "modern medicine" at that time : )) started washing their hands before surgury? I'm not anti western medicine but it never has been perfect and even now it falls short of that. If you read boards such as this you end up seeing mistakes on all levels of medicine from individual bad calls by doctors to FDA actions being politicised by the current government. Overall it's great, it's better than anything we've ever had. They (100 years hence) may have a view similar to ours as we look back at those doctors who argued vigorously against the practice of washing hands just over 100 years ago. I live not so far a ways from where the state used to do all the doctor ordered lobotomies which modern medical science used at the time to treat some folks; all very modern and cutting edge in it's day.
If there was a wonder drug in the past hundred years what would that be? Possibly asprin. You know where that drug came from? (natives squatting in the dirt chewing on the bark of a tree)
Your final point is that accupuncture infected people. Reading boards such as these you are probably aware that there are more than a few who were infected by our blood banks, medical prodedures done before sterilization techniques were known or of course the government programs for innoculation of our military inductees. It happened all over. What does that have to do with Naomi? : )
I love getting data out there. I even like arguing a point (to a point). MY point is that we don't know everything and we can always improve on the current status quo. It's one reason I belong to a HCV board. (to learn, not just to argue) : )
By the way......I wonder why tone of the most prosperous industrialized of nations keeps dropping in rankings when comparing longevity?
I'm just teasing you a little. Why try to decisively "prove" someone is wrong? I see that there is validity and truth in your argument. Is there any in what Naomi has offered? I happen to believe there is. Believing that does not negate the validity of modern western medicine.
To each his own.
I am certainly not stating alternative meds..be it acupunture or herbal remedies..or others, are better than modern medicine. I do believe both can enhance one's life. Obviously...I'm txing now as well as in the past. When I received acupuncture...I saw the needles being taken out of the sealed box... How does your father-in law know he got hepc from acupuncturist?? I'm not doubting it...there are unscrupulous people in every field....just wondering.
You have a point Willy, as mentioned in my first post, just a personal view :-) If people want to feel special, with special treatments, they can do this to feel better and happier. I'm just an ordinary joe though, not special at all (we can't all be special IMO), so I'll stick with what is proven, no need for a herbalist or similar to stoke my ego :-) :-)
I think it is valid to hold a view that much of the pseudo-science (meaning can't be tested empirically)people think helps them only helps because they think it will. It is a valid human and scientific view. It doesn't mean that you don't think its ok for other people to do that if they wish, just that you yourself aren't going to be watching "the secret" anytime soon.
We have a lot of immigration from third world countries, I don't know if that could significantly change our longevity stats.
Being that my acupuncturist was Chinese and that it (acupuncture) does originate from China...I would guess I got the real deal. The fact is many people here have lived "clean lives" w/o transfusions and still have this wicked virus. So...the reality is....many can only guess....
an interesting aside.. After World War II, The Japanese had a very high rate of IV drug use....they also have a very high rate of HCV...though we (USA) are quickly catching up.
moa; I hate to argue further with you, but I'm every bit as unspecial as you; probably more. : )
(I don't know why we are talking about acupuncture in this thread but..............)
The first person I ever met that had acupuncture was just a wife of a home town friend. She told me that she had been suffering from migraines that were debilitating and increasing in frequency and severity. She told me she always had to drive the kids with a bucket and a towel since she was always vomiting while driving. She didn't say that she was becoming suicidal but she expressed it this way; "If somebody were to offer me one year of life that was free of pain in exchange for dying after that year......I think that I might have accepted it." Long story short she visited a acupuncturist. They looked her over and told her; "I can help you but it will take more than a few treatments". She said that she never vomited again after that first treatment. After several months she was "cured"; she never had another migraine. Who can say; the powers of the mind? For her she was helped by acupuncture, not that a charlatan had taken her money and that she managed to become cured by placebo effect.
Ala; I'm sorry to be so clueless; is "The Secret" a TV show? (sorry; I had to google it to see what it is) I'm not sure that it's valid to substitute some other new age book or whatever in exchange for talking about Naomi's views.
Her website "home" prominently displays a link about Hep C. Here is a link and a few paragraphs;
"Greetings in the name of compassion, healing and hope,
When Hep C forced me to retire from my singing career in 1991, even though I was quite ill I wanted to see something positive come from such a crisis (the word crisis in Chinese is made up of 2 characters: danger and opportunity). When I contacted the American Liver Foundation I was surprised to learn they had only $200,000 in their bank account.
I started a research and education fund with $75,000 of my money. Since then I've been able to raise over one million but we need so much more! The primary goal is to finance research to find a cure for this deadly, mysterious, and highly mutant virus. For example: we awarded one research grant for $100,000 to doctors in Colorado to study Pediatric Hepatitis C. I can't bear the thought of kids suffering from this condition. (FYI: I've never received a penny for my work with the American Liver Foundation.)"
My point is that she deserves far better than she gets from some of the Hep C community. For that matter....who can you name who has done more than this?
alagirl: I have yet to check out the "other side" and read up...it sounds interesting. Thanks.
Willy: You're right about that...she may be a wacky lady but she has done more than her share of trying to educate the public and help remove the stigma surrounding this virus. Money talks...and it's impressive to hear she has shared some of her own for research.
We are told to avoid sharing nail clippers, or to kiss with bleeding gums, or to share a tooth brush. It makes sense to me that acupuncture is a source of transmission, and that is what my father in-law believes, just as others have caught Hep C from tattoos, or piercings. It may not be common, but it does happen. I read recently of an acupuncturest that was shut down.
Sorry, but I just don't trust many of these "proffessions" enough. While modern medcine is not perfect, and miskates happen, there are systems and redundincies in place. But with these other providers, it so easy make up all sorts of qualifications today, and as I said earlier, people want to believe. We want to believe that this person who treats us "special" is the best Chinese "doctor" there is, and also follows every health precuations. But why should I take the chance, not matter how small and insigninficant, that I might make someone else sick? It's just too horrible a thought for me.
"We propose that Japanese who have had experienced acupuncture should be more rigorously examined for health. It is still necessary to emphasize the importance of avoiding filthy acupuncture or non-disposable needle injection for people in Japan. (author abst.)"
Maybe the Chinese doctors in North America are cleaner than the Chinese doctors in Japan? Is it worth risking someone's life for though?
I just think you contradict yourself though, you say mind-body connection is poppycock, then you go on to say to many people who have been cured of pains, etc from acupuncture- that it was hypnotic suggestion...suggestion is at place in placebo effect...I don't think these people have any reason to lie, if they were hurting, and then they are not - with acupuncture...
I know many people who are like me, acupuncture has helped some things, others not...same thing with medications...with me, it's given me relief from pains and achey feelings, when medication didn't work, but then on other things (like headaches) it did nothing, but medication worked...conversely.
What I want to know is, why is my power of suggestion so dang picky? I just want relief, I don't care what gives it to me.
Many, many people are going to acupuncturists, these practitioners are just not relying on one time business from people, they'd be out of business if that were the case...they get REPEAT business, cause it works for many people. They don't really understand how it works, it just does.....on some things.....for some people.
I try not to make my own experiences a universal truth...well, it didn't work for me, therefore it's BS. The human body is too complicated.
But they "meaning the scientific community" don't know a lot of things about chronic illness...they don't really understand "pain".....they are just beginning to...
Pain has interested me a lot, and I've read up on it. They are currently doing many studies on it, and know a lot more now, but they don't have all the answers, they'd be the first to tell you that.
They have little knowledge (relatively speaking) on how the brain works, the supposed bio-chemical processes of criminal behavior, addiction...this is what I'm talking about, the scientific community doesn't have all the answers.
I'm a documentary freak, I see every documentary or medical special I can concerning some of these issues. So if they can't fully explain, definitely, all these processes and mechanisms, why discount acupuncture? There might be some "scientific" reason why it works, they just don't fully know it yet. Respectfully.
A lot of people don't know how they picked up the disease, and have no obvious risk factors. I realize we can't go overboard, people get run over by cars too. But acupuncture and tatooing in particular, seem pretty obvious to avoid to me, just like not giving blood.
My acupuncturist opens a brand new, sealed package each and every time he pokes me. I lie there and watch him. They are all brand new, then he throws them away in a special container..they are made to be used once, and thrown away. I have never heard of anything else....in the experiences of people I know, and my own. Though I've never been to China, I go to Santa Monica.
"What I want to know is, why is my power of suggestion so dang picky?"
Let me restate: I think it is very possible for people's subjective feelings about how they feel to be swayed by things they believe in. Herbs, acupuncture, whatever. IF they have a more suggestible personality. And in psychology, we would say that there are very good reasons why someone would hide some things from themselves and not others. In my mind its all about denial. And in some respects, denial is a helpful coping mechanism for people. Who are not me.
I do not think, however, that these aduncts are in any way shape or form actually curing people or doing anything other than giving them something to believe in. It works better for people who are more suggestible. In my view. This is what I believe and it is not going to change until I see some proof otherwise. Empirically. I think I have said the same thing about twenty times. And I'm sorry if it isn't what you believe. It IS, MOST emphatically, what I believe.
the needles probably get recycled for patients in Japan :-) (I'm kidding on this one). If it makes you feel good I guess, that's fine, it is your money and fortunatley not mine:-) But people do need to be careful with these "sciences", as there are a lot of unscrupulous people out there, and Hep C is a pretty big market to make a buck from. In the same way, we are sort of lucky to have Hep C, as lots of others have it. The pharma companies research and spend on this, unlike more obscure conditions that affect only a few people.
I happen to agree with everything you have said here so far. I also think that many people don't know where they got hcv (wish I didn't know in some respects) and that tattoo parlors and acupuncturists have infected people. Many states don't have good laws in those respects, and auto-claving is imperfect with some machinery. I could go on forever.
There are also botox parties where people use the same syringe. People have also been infected by our own blood supply and hospitals. the fact that sometimes stupid people or people who are rushed make mistakes in hospitals or don't follow procedures does NOT impune the integrity of the science as some here seem to argue, but is a result of the human fubar factor.
There is also some philosophy that shows if you do not treat a non-chronic illness, symptoms will typically follow a similar path (get sick, illness peaks, then slowly get feel better). Whatever patients last treatment was before feeling fully better, will almost always be what they believe "cured them". It doesn't matter that an earlier treatment might have been the reason, or even if any treatment had an effect. This works in the favour pseduo sciences, and often against real science, as people will often go to the doctor, take their medicine, then see a herbalist (or similar) when it doesn't work as quick as they want. When the feel better, the herablist "cured" them. It's all again about wanting to believe that this stuff works, that we are smarter than our real doctors.
It's nice to have a poster friend alagirl - I don't normally bring this stuff up, it's not what people want to hear or believe. The cases that make me really angry are when family members are coerced into stopping treatment for one illness or another. I can understand the choice not to treat hep C or another illness due to side effects, but not because there is something better out there. People are then just fooling themselves, and making charlatans rich.
yes, it's all in your head, and you no longer feel the pain that you did before, because of a supposed "suggestion" - a mind-body connection. I just wish that they could explain *pain* for instance, in such succinct and definitive terms.
I also think it serves a purpose for many people to have everything neatly defined and explained..... when, in actuality, there is no real *definitiveness* to many of these issues, as of yet....
hopefully, we are just agreeing to disagree after all, have a good weekend.
Well, some people, even on this thread, didn't really testify to the "arc" you're speaking about. Many here, not just on this thread.....but on previous threads, have just spoken about having chronic pains, and otherwise.....they do this procedure, then it's gone....in a relatively short time after the procedures have finished.
Anything is possible after all, but it sounds pretty simple to me, to make the deduction that maybe the procedure itself had something to do with the pains/etc. being gone. But obviously not to others. Respectfully, have a good weekend yourself.
Personally, I don't think anything is possible. The world is not flat, the stars are not cows, and herbs have never cured hep C. It is one thing to be open minded, but that also exposes us to having our minds filled up with junk, especailly when we are vulnerable, as us Heppers are. There are a lot of people out there who see the Heppers or Cancer patients looking for comfort, who are willing to provide it for a price. They will often promise a "long term treatment" (funny that, long term can't be measured, and will cost more money). Sadly, for many, all this price will do will be to take away from the futures of our families and children, to give to theirs (especially with the Cancer clinics in Mexico and similar).
It doesn't have to be either/or. For those not familiar, Dr. Robert Gish is an internationally respected hepatologist known for an agressive treatment approach using western medicine. Misha Cohen is...well, read the blub.
Love to stick around for the discussion, but it's time for this SVR to go to bed.
how do you extrapolate what I said, to the world being flat or round? those issues are not up for debate, some of these others are...mostly theories from different scientists, who will be the first to tell you that they are not fully explained yet.
And I agree with you that there are charlatans there, ready to make a fast buck...just not all....and this is precisely what these forums are for, along with support.....adult patients who want to make their own decisions about these things and have the opportunity to see many sides to these arguments....some will side with your point of view, others with mine, others will think we're both full of it.... and the truth for them lies somewhere in the middle, or way outside of all this...
This RVR UND (30 odd weeks in, I don't like to count) needs to take a sleeping pill to ignore this interferon buzzing. My Friday night "take my mind of this stuff "routine is these boards now, how sad :-). Night all.
"We want to believe that this person who treats us "special" is the best Chinese "doctor" there is, and also follows every health precuations."
Obviously, this was an intentional barb/sarcastic response....to my post and my experience with alternative meds. I had been in a clinical trial...and lost most of my hair....my arms looked like sticks and i looked in the mirror one morning and thought that I must be dying. I had just buried my father who died from mastasticized colon cancer (spread to liver) and was starting to look an awful lot like him. My hep. dr. at the time did not explain things to me....my own fault...I was scared to ask too. I was introduced, by chance, to someone who helped me tremendously...whom I went to see once a week for at least a year. Call it what you will....but kindness, empathy, and most importantly the knowledge and desire to help me was a blessing and I know was a gift from my Lord and Savior Jesus Christ, that Norman was a fellow believer was an added blessing. Possibly, I am misinterpreting what I see as insulting behavior towards me. I hope so 'cause like most of us here...I come for advice and support. I don't agree with everyone...but I do attempt to respect their beliefs, and their feelings.
ps. and YES...I do KNOW that every precaution was made. I was more concerned about me giving it to him than I was vice versa! (though i was UND)
I am sorry you feel insulted. I was expressing my personal view, which is different from yours. It is no less valuable than yours though. IMO there are a lot of people out there, taking a lot of Heppers and Cancer patients for a ride. Maybe you don't feel that way, but I do. If I needed more money, the thought has occured to me that setting up an alternative medicine clinc aimed at Heppers would be an easy way to make it. I would tell people how special they are, how they have been poluted by toxins, how we can clean this by herbs over a long term treatment. I might even promise them an extra special treatment that costs even more, when my patient gets sicker (of course, the sickness is not because of the virus, but the bad food my patient eats and the polution they digest). I'm not saying alternatvie doctors don't believe this stuff, maybe some of them do, but belief does not eliminate a virus.
It is a natural instinct to want to think that our special doctor is better than our real doctor, because they are more kind to us (i.e. don't tell us the truth, real doctors can seem cold for this reason). But the hard evidence does not support alternative treatments.Yes you will find many people who says, this helped me, or that helped me, but how do we know, when people want these things to help them, and may have got better naturally anyway? Unless the treatment for Hep C promises a potential "SVR", all we are doing is trying to manage symptoms, not cure the illness. To each their own as to how much they want to pay for such symptom management.
I believe personal experience overides personal "view". Jus' my opinion....
and it wasn't that I was "told" how "special" I was....by any means. I just no longer was treated like a number..but as a human being with some dignity and how I would want to treat others...in a similiar situation...with respect.
Of course, there are charlatons with snake oils...there always have been...
I think medical doctors are often a certain type of person. They are typically very very smart, and see many many patients. Some of them can not easily relate to you or I, or many not have very good personal skils. They almost operate on a different level. I don't mind that, the key to me is that they have the experince and expertise, not how nicely they talk to me. But that's just me.
If we need comfort elsewhere, I can see the point of a psycologist, massage therapist, sun tan clinic, hockey game (that's me) or whatever it is that we like. But we need to be realistic about why we are going there. That reason, is not to cure the disease, but to feel a bit better about ourselves.
personal experience or anecdotal evidence may color how an individual sees things but it doesn't add to a scientific body of empirical data and knowledge in my view. I have no problem with people doing things that they feel help them as long as they don't substitute them for cures and as long as they aren't making their problems worse. And even then, if that person is an adult, it's their perogative to do whatever they want with their own body. It's the reason we have living wills. I just don't like the fact that other people expect me to change my view and want to argue with me about it all day.
MOA is not, in his defense, pulling what he is saying out of the air. These are standard viewpoints taught in philosophy, sociology and psychology courses throughout the country to explain why people behave and think in the manner that they do.
I don't agree with him that doctors are typically very very smart. Lots of dim bulbs out there in every profession. However, there are brilliant physicians and I hope everyone here finds the best in their area so we can all do well.
also, I think its valid for MOA to be particularly strong in his concerns about this subject since his own father-in-law was probably infected by an unscrupulous practitioner. I'm sure there are practitioners who believe what they do is helping people and who use clean implements. I just happen to agree with him that it is Western medicine that has improved longevity and quality of life.
I was going to give my own anecdotal evidence again about how Western medicine has worked in my own life, but realized that doesn't work in a scientific model any more than someone else's anecdotal evidence about folk remedies when I stop and think about it. You have to take the whole of both and run studies that show efficacy or lack thereof.
And yes, medical mistakes happen too. Stupid people abound in every profession. (just ask me how often my product to customers gets shipped wrong even with perfect instructions) oy!
And LadyWhy, I am glad you are doing better and sorry for your difficulties :) and I too pray, both for myself and others. Mostly for others though. I hate to be greedy. I am sure that shocks everyone. I just believe God set things up in a deliberate and scientific fashion with certain immutable pricinples that lend themselves to be studied and drawn upon by bright minds.
I just don't like the fact that other people expect me to change my view and want to argue with me about it all day.
who's arguing with you?
and regarding your above comment...that is exactly how I feel!
I don't know why you feel the need to defend anyone but...but, your perogative!
....this certainly sounds extremely condescending....."These are standard viewpoints taught in philosophy, sociology and psychology courses throughout the country to explain why people behave and think in the manner that they do". I too have taken a few courses.....
Be well...good luck txing.
Try txing for the 30 wks and more...see how bright your mind is.....
I'm not doing better now....I'm apathetic, exhausted and have a fever....and more..............maybe even like MH...a lil grumpy.
I just don't appreciate personal insults and disrespect to others, (or myself), their own experience, opinions and/or knowledge and when it happens...I can get ticked off...blame it on the meds...or jus' lack of patience...when someone comes across outta nowhere..who seems to think they have all the answers.
Ahhh, if only.......................someone (here) did.
Moahunter: "Unless the treatment for Hep C promises a potential "SVR", all we are doing is trying to manage symptoms, not cure the illness. To each their own as to how much they want to pay for such symptom management."
The trouble with debating, is that sometimes main premises get lost in all the back and forth. Your statement summed up what we've been saying all along. Not one poster here said that these other methods of treatment actually ERADICATE the virus.
There are people here who are doing these other things because they just want help with their SYMPTOMS, maybe they are going to treat with the big guns soon, or have treated conventionally and it didn't work. When you have some of these symptoms, just feeling better, or much better, is worth the RELATIVELY LOW EXPENSE of acupuncture, etc. Respectfully.
alagirl: forgive me if I'm wrong, but some of your posts back to me sounded a bit hostile and/or sarcastic, if you were kidding with this following post, then that's fine, cause I have a sense of humor, or I like to think so. You took my following statement as moral relativism?
"and the truth for them lies somewhere in the middle, or way outside of all this...
A moral relativist I take it? lol
That statement I made has nothing to do with moral relativism. But like I say, if you were kidding, fine.
Then you go on to say this: "I just don't like the fact that other people expect me to change my view and want to argue with me about it all day."
I'm sorry, but didn't YOU take up the issue that other's people's experience with acupuncture and feeling better for it..... was just these people in denial and psyching themselves out?
Then you proceeded to try and back up your premise with further arguments? Just like the rest of us? Certainly posting after I left. It's a two-way street.
When many people debate certain issues here, they could be just defending, or stating their own beliefs on any given topic, and debating others....It's a discussion board after all, it's not necessarily about changing the *other* person's mind or opinions. Since you know about psychology (I was a psych major myself) then you probably know about *projection*. Respectfully.
When I say lol, you can take it that I'm joking. I was. God's an absolutist, but Jesus was a relativist.
I don't feel like you're ok with me having the view I have. You do seem to keep wanting to pick apart what you claim to see as "inconsistencies" in my view, then you make what I see as veiled snide comments insinuating in one post that I'm what, anal? (ha! lol you should see my house) a control freak? and now, that I have difficulties in my mind that I am projecting onto others?
Well I have one for you. Denial ain't just another river in Egypt baby.
I don't believe my view is inconsistent and I don't feel like debating you about it anymore. But you keep bringing it up. Even though I'm through talking about it with you.
I said I don't believe in the efficacy of acupuncture and herbs but also said that people are free to disagree and have their own views. I also said that I am definitely willing to revisit both of those topics if new research comes out. Anecdotal evidence on side effects and/or cures is not research. Last time I checked. Maohunter was trying to clarify certain psychological principles about improper research methods in experimentation and in proving hypotheses that are in every psych 101 textbook.
And while I'm at it, I resent on behalf of whomever it was directed the veiled hints back and forth on the alcohol study that was posted that people who disagree with the alcohol postings are either former or current alcoholics. Just so THAT'S out in the open. I don't know enough about the history of this board to know to whom those comments were really directed but I can only think that it's one of the more demoralizing things I've seen here to refer to what may or may not EVEN BE someone's past or current difficulty with substances. I have to think that there aren't any perfect people here. But then, you know what my mama always says, Nobody's nearly as righteous as a reformed sinner.
From now on, If you or someone else has something snarky to say, just say it.
Try txing for the 30 wks and more...see how bright your mind is.....
Trust me, you still come across as a pretty smart cookie. As for me, two days on riba and I'm already in a fog. I was hoping it would take a lot longer than that. I couldn't find my purse in my cart last night when my girlfriend took me to the store. She said, what is WRONG with you? I gave her my most scathing look and said, You did NOT just ask me that. She said, oh yeah. Sorry.
Just a suggestion: As you said: "I don't know enough about the history of this board" You are just beginning tx. I get the sense that you are struggling and have some resentments....I think it might be a good idea to read up, browse the archives..and get a better understanding of this forum. I know that in my case...it has been a lifesaver. Without many of these people who have reached out to me with either a phone call...riba delivered to me from a fellow hepper, when I had problems wth insurance, advice about PCR's..etc..etc.. I could not imagine having to go through this w/o the emotional/medical/comraderie/ support and care of the people here. As I have said from the beginning..this place has been a gift from God for me. Again, you just started tx...try not to burn bridges...when you (may) really need help w/ sx or need to discuss something...the beauty of this place is that someone is always here. 4C...is one of those people...who has been very supportive to many, if not all new comers and has also added alot of valuable information....
I hope you sail thru tx....I'm not...but....that doesn't stop me from having faith. That's really what most of this is about..for me. data vs.my faith. Not faith in medical dr.s or alternative healers, but in my God of whom I know as Jesus Christ.
Faith and Hope...that's what is gonna get me through this.
"One day at a time"
Just read your comment, "one smart cookie" Thank you.
Not that I'm not always "trying" to understand the scientific data and learning about this disease every day...it's become my hobby, you might say...
In my case with double dosing both peg and riba...it's a long shot for me....but...God is Sovereign...and I'm doing what I can.
Hope you have a nice day.
look, I tried to be civil in the beginning of this thread up till the end (people can judge for themselves) you didn't...you came off as very condescending to people who made accounts of their experiences with these things.....to me you are projecting. I have no idea about veiled control freak accusations, that's in your head. I have no idea what youre talking about relative to an alcohol thread either. Other people have debated you and pointed these things out to you, yet I get the recriminations for these things. I must of really rubbed you the wrong way, and for that I'm sorry.
I have been waaay too argumentative (particularly when the arguments get circular and reach dead ends) in this thread, maybe because I'm nervous about certain things, I own that, perhaps you will too.
I really just try to debate points that I disagree with, and not get sarcastic or personal. They are just words on a discussion group post, people really don't know me here (unless I know them offline) and I really don't *know* anyone here either.
I've seen many members get off to a bad start with arguments getting too personal, only to be great friends later on in the proceedings. Or some people just choose to ignore each other for the good of the board. I truly wish you well in your treatment, and give you the last word on this if you want, I too am tired of this debate.
Sometimes people's styles are just different and there are some people who just aren't going to work as well together due to belief systems or whathaveyou. Sometimes its better for those people cool off from each other a little. I'm not always the easiest person to get along with and I'm aware of that. I'm also very opinionated and I don't beat around the bush about what I think and a lot of people may not like that. I'm aware of that. If there are people who therefore want nothing to do with me, I understand.
I do care about others, and you and I share the same faith. I don't necessarily know if I'll clear but I always trust there's a way to work with whatever happens. When bad things happen to me, I try to keep a sense of humor about what's happening to me, even if its kind of a dark, sick humor.
I'm pretty certain I'm going to have difficulty with tx, since I already feel bad. And I know it will probably get worse than this. I appreciate the information people have given me here, especially as pertains to anemia, my tests, etc. And in the end, I just hope and pray that everyone here has the best outcome possible.
can't imagine doubledosing. My first bad side effect has been my hands. It hurts badly to type and move them. My joints are just aching. I am also exhausted (which had just started to get better from the acute phase of the hcv about two days before I started my first dose) have a headache and a low grade fever. Its all good though. At least I'm finally on the tx!
Maybe try soaking your hands (your body) in warm water and Epson salt? Sorry to hear you are already feeling the sx.. Some people start off with heavy sx and then their bodies adjust to the meds..after a number of wks..they are feelin' better. Hopefully, you'll fit that category. What are your stats? vl, genotype etc... Please explain "acute phase"? How long do you think you have had this virus?
I love baths! I took a warm one last night and it helped some. A lot of times a hot bath helps my migraines too because the heat dialates your blood vessels. So I took a lortab then got into the tub. I know when I got hcv because I had negative tests quarterly last year, then in december of last year, april of this year, and then on 6-21 of this year. (took hiv and hepatitus screens each time and negative for both). Then I was raped on 7-1. I had planned to do both the hiv and hepatitis screens anyway, due to the rape but about three or so weeks after the rape I had flu-like symptoms and became progressively more ill. I got an ulcer on my leg at about that time too that still hasn't healed, I still don't know if that's part of it, but anyway. So I did the HIV and HepC screen at the end of August (almost two months after the rape) and it came back positive for hepC.
I made an appt to see a specialist for two weeks from that time but due to all the smart people on this board I went ahead and got a viral load and genotype done. My viral load was I either 182,000 or 187,000 (mind you, this was in the first week of November and I haven't had it taken since and I just started tx yesterday. And my genotype was 1b. Unfortunately, the lab longer than usual to return the results.
I have had difficulty voiding urine, pain up under my ribcage, and just general exhaustion and severe nausea that would not go away with phenergan while in the acute phase (before treatment). My liver enzymes, which have always been in single digits, also went up for the first time in my life. To complicate things a little, I have too much iron in my liver because a previous doctor od'd me on it intraveneously and I have three tumors in my liver. I forgot to add that the acute episode seems to have caused me to have a little more problem making blood. Anyway, they did a catscan to check on my liver and the tumors Friday. If they haven't changed size, and I'm sure they're prob fine, all of that is cool.
Due to the massive amount of past bloodwork I am able to rule out having had hepc previously. Oddly, its my ignorance about hepc that led to the bloodwork. Since I have anemia I catch things easily. I had a partner at the beginning of 2006 that I learned wasn't faithful. The relationship ended but I worried about possible transmission of anything so I decided just to be safe to screen for hepatitis and hiv quarterly. My last test would have been the 6-21 test if I hadn't been raped. I forgot to mention. My rapist was an IV drug user. I don't know of any other exposure I could have possibly had. Fortunately, I was already vaccinated for the hep a and b prior to the rape. eek sorry that was so long.