Aa
Questions for Doc who says, 'Wait-n-Watch'
Background: 1b diagnosed April 2004; Started tx in May with 3M copies; 3log drop @ 12 weeks but stopped @ 36 weeks because viral load increased(partial responder).
Referred to Dr.Kwo, Chief Hepatologist & HCV clinical trials @ IU Med. Center. Bx says less than Stage 1 & no inflammation. If I choose, Dr. Kwo will offer me daily INF+RBV,or IDN-6556. His advice is to wait-n-watch.
March 30th is my next appointment I'd like to ask the right questions with a wait-n-watch approach:
1.)Does viral load matter?
2.)High iron was what led to my diagnosis. It went normal with tx but will it rise again?
3.)How ofter should ALT/AST be tested? What if they rise?
4.)What's the stats for fibrosis progression? I'm 47.
5.)Any CAM recommendations?
6.)What if tx "angered" the HCV demon and it goes nuts?
Do you guys have additional questions that I should ask or comments on the above? Any opinions about a wait-n-watch approach?
Thanks for all of your support and help.
Mike
Referred to Dr.Kwo, Chief Hepatologist & HCV clinical trials @ IU Med. Center. Bx says less than Stage 1 & no inflammation. If I choose, Dr. Kwo will offer me daily INF+RBV,or IDN-6556. His advice is to wait-n-watch.
March 30th is my next appointment I'd like to ask the right questions with a wait-n-watch approach:
1.)Does viral load matter?
2.)High iron was what led to my diagnosis. It went normal with tx but will it rise again?
3.)How ofter should ALT/AST be tested? What if they rise?
4.)What's the stats for fibrosis progression? I'm 47.
5.)Any CAM recommendations?
6.)What if tx "angered" the HCV demon and it goes nuts?
Do you guys have additional questions that I should ask or comments on the above? Any opinions about a wait-n-watch approach?
Thanks for all of your support and help.
Mike
thank you for trying to enlighten us closed minded folks, many before you have tried and have found us too inquisitive and educated for their simpistic pitch; your post matches incredibly the statements made in this article found at
http://www.criticalenquiry.org/theory/natural_lie.htm.
to quote a few:
"Consumers must be aware of all these ploys if they are to avoid being misled; each is commonly used by purveyors of various foods as well as alternative medicines and therapies. While "mainstream" medicine is subject to massive peer review and government regulation designed to manage claims of the effectiveness of a given treatment, most alternative therapies are not subject to any such regulations. Vitamin or "herbal therapy" producers can claim nearly anything without having to produce a single unbiased review, and frequently make use of anecdotal evidence or testimonials offered by physicians whose motives may be unclear. "
... of the promoters of these "remedies";
"If they take a pill (say, aspirin) and nothing happens, but later they take a dose of Willow Bark and the headache resolves itself, the Willow Bark will be credited.
From a certain point of view this seems very logical: "the last thing I took cured me." But if the Willow Bark was taken an hour or so after the aspirin was ingested, then it is more reasonable to assert the aspirin was reaching its optimal level in the bloodstream when the Willow Bark was ingested, and therefore the aspirin was responsible for relieving the headache. This is also supported by the fact that one would need to drink roughly 30 cups of Willow Bark tea in order to receive the same amount of active ingredient as is found in a single aspirin tablet.
The above scenario is yet another instance of a logical fallacy at work. In this case, the fallacy is known by the name after this, therefore because of this. The false conclusion is that a given action produced a given result solely because the action occurred prior to the result. By the same logic, someone may arrive at the conclusion that rain is the result of washing a car or mowing a lawn."...
"Others rail against pharmaceutical companies' policies and accuse them of "suppressing" discoveries that would jeopardize their profits, while others accuse these same companies of financing the "drug culture" of modern medicine by subsidizing medical schools that train doctors to use drugs in excessive amounts"
The "alternative" industry is not as philantropical as much as these promoters want us to believe, it is a multibillion industry and with hardly any accountability of their claims;
"Herbs are big business: the American Botanical Council estimates the U.S. market for herbal remedies at nearly $4 billion a year--and growing quickly."
so next time anyone feels sorry for these poor FDA persecuted "doctors" promoting the natural way, remember they enjoy a piece of the multibillion pie.
in the meantime beware of some possible consequences of going the alternate route:
http://www.washingtonpost.com/wp-dyn/articles/A62671-2004Sep4.html
http://www.criticalenquiry.org/theory/natural_lie.htm.
to quote a few:
"Consumers must be aware of all these ploys if they are to avoid being misled; each is commonly used by purveyors of various foods as well as alternative medicines and therapies. While "mainstream" medicine is subject to massive peer review and government regulation designed to manage claims of the effectiveness of a given treatment, most alternative therapies are not subject to any such regulations. Vitamin or "herbal therapy" producers can claim nearly anything without having to produce a single unbiased review, and frequently make use of anecdotal evidence or testimonials offered by physicians whose motives may be unclear. "
... of the promoters of these "remedies";
"If they take a pill (say, aspirin) and nothing happens, but later they take a dose of Willow Bark and the headache resolves itself, the Willow Bark will be credited.
From a certain point of view this seems very logical: "the last thing I took cured me." But if the Willow Bark was taken an hour or so after the aspirin was ingested, then it is more reasonable to assert the aspirin was reaching its optimal level in the bloodstream when the Willow Bark was ingested, and therefore the aspirin was responsible for relieving the headache. This is also supported by the fact that one would need to drink roughly 30 cups of Willow Bark tea in order to receive the same amount of active ingredient as is found in a single aspirin tablet.
The above scenario is yet another instance of a logical fallacy at work. In this case, the fallacy is known by the name after this, therefore because of this. The false conclusion is that a given action produced a given result solely because the action occurred prior to the result. By the same logic, someone may arrive at the conclusion that rain is the result of washing a car or mowing a lawn."...
"Others rail against pharmaceutical companies' policies and accuse them of "suppressing" discoveries that would jeopardize their profits, while others accuse these same companies of financing the "drug culture" of modern medicine by subsidizing medical schools that train doctors to use drugs in excessive amounts"
The "alternative" industry is not as philantropical as much as these promoters want us to believe, it is a multibillion industry and with hardly any accountability of their claims;
"Herbs are big business: the American Botanical Council estimates the U.S. market for herbal remedies at nearly $4 billion a year--and growing quickly."
so next time anyone feels sorry for these poor FDA persecuted "doctors" promoting the natural way, remember they enjoy a piece of the multibillion pie.
in the meantime beware of some possible consequences of going the alternate route:
http://www.washingtonpost.com/wp-dyn/articles/A62671-2004Sep4.html
I see your translater go. com is working well, sweetheart. You are so awesome, what you speak and write in what 5 or 6 languages. I know sweetheart, it gets boring in Indiana. Hey Lou can teach you a few more languages. I have a bunch of his internet sex transcripts,in Spainish I would be happy to forward you. Lou made sure my husband saw them while he was txing, and your friend Vicki made sure she called Billy 2 times on tx to warn him about Lou...We are so grateful to the 3 of you. Indiana !! how is he sweetheart?
Jeez, what a bunch of of close-minded cynics. I'm feeling a little defensive. If you'll carefully re-read my post you'll get the answers to your comments.
1. I AM NOT A DISTRIBUTOR -- I stated that in my post -- I don't care who you get the friggin' Shegoi from. And for those of you who object to multi-level marketing -- is that behavior worse than pharmaceutical reps who lean on/provide incentives to docs to prescribe Pegintron instead of Pegasys?
2. I told you that chapparel in it's natural form is toxic to the liver but Shegoi is a patented formula with liver toxins removed.
I didn't say it cured Hep C and I'm not advocating Shegoi for people with advanced stages of liver disease but for those who have fatigue, low grade fever, etc.
Re: studies, you're right, there's probably not many studies b/c big companies in the position to fund studies can't make money off herbs.
Don't want to be a lab rat? I've got news for you -- if you're on treatment you already are. The long term effects of the currently approved treatment are a big unknown. Many people one year post treatment have various and severe health problems and ribavarin reportedly causes cancer.
I came here to share but don't think I'll be back.
1. I AM NOT A DISTRIBUTOR -- I stated that in my post -- I don't care who you get the friggin' Shegoi from. And for those of you who object to multi-level marketing -- is that behavior worse than pharmaceutical reps who lean on/provide incentives to docs to prescribe Pegintron instead of Pegasys?
2. I told you that chapparel in it's natural form is toxic to the liver but Shegoi is a patented formula with liver toxins removed.
I didn't say it cured Hep C and I'm not advocating Shegoi for people with advanced stages of liver disease but for those who have fatigue, low grade fever, etc.
Re: studies, you're right, there's probably not many studies b/c big companies in the position to fund studies can't make money off herbs.
Don't want to be a lab rat? I've got news for you -- if you're on treatment you already are. The long term effects of the currently approved treatment are a big unknown. Many people one year post treatment have various and severe health problems and ribavarin reportedly causes cancer.
I came here to share but don't think I'll be back.
I agree with you that Kittyface is probably a distributor for this stuff. Her statement: "It should be taken with lots of greens and chlorella to cleanse virus die-off in the blood" is clearly a sales pitch! And a ridiculous one at that! Virus die-off. Ya right.
Kittyface -- if we're judging you unfairly, please let us know. I'll be the first to apologize. But, on the other hand, if you're preying on desperate people to make a buck by selling a product that could actually CAUSE liver damage -- then shame on you.
Susan
Kittyface -- if we're judging you unfairly, please let us know. I'll be the first to apologize. But, on the other hand, if you're preying on desperate people to make a buck by selling a product that could actually CAUSE liver damage -- then shame on you.
Susan
Well, Kittyface, as alluring as the claims for Shegoi are, I doubt that I'll be trying it any time soon. I've spent the past hour researching it on the Internet and nearly every search result leads me to information on how to become a distributor. I can't find a single example of clinical research that tested the safety, efficacy and tolerability of this product.
I have a personal rule that I use when it comes to alternative therapies. I'll only put something in my body that has been studied by researchers at reputable institutions. I'm not interested in being a lab rat for natural therapies.
But, boy, I certainly understand how tempting it is to try something like Shegoi when someone like you write such a compelling testimonial. I hope anyone who reads what you wrote will also consider my rule regarding reseach before they take the plunge.
Susan
I have a personal rule that I use when it comes to alternative therapies. I'll only put something in my body that has been studied by researchers at reputable institutions. I'm not interested in being a lab rat for natural therapies.
But, boy, I certainly understand how tempting it is to try something like Shegoi when someone like you write such a compelling testimonial. I hope anyone who reads what you wrote will also consider my rule regarding reseach before they take the plunge.
Susan
Ok, you got my attention. But first, I want to welcome you to the board and thank you for sharing your story. The trip to the ER with busted blood vessels sounds horrifying.
I went to the www.sehgoi.com website and it has a lot of fascinating information about this herb. I do have some questions for you:
1. How long have you been taking it?
2. How quickly did you begin noticing changes in your general health?
3. Has taking shegoi had any impact on your viral load or liver enzymes?
4. Have you had any side effects related to taking it?
5. What dosage are you taking?
6. Can this herb be taken by people who are on treatment?
I'm part of a relatively small minority here that isn't treating, so I'm always on the lookout for alternative approaches. Again, thank you for sharing your experience. Best wishes to you.
Susan
I went to the www.sehgoi.com website and it has a lot of fascinating information about this herb. I do have some questions for you:
1. How long have you been taking it?
2. How quickly did you begin noticing changes in your general health?
3. Has taking shegoi had any impact on your viral load or liver enzymes?
4. Have you had any side effects related to taking it?
5. What dosage are you taking?
6. Can this herb be taken by people who are on treatment?
I'm part of a relatively small minority here that isn't treating, so I'm always on the lookout for alternative approaches. Again, thank you for sharing your experience. Best wishes to you.
Susan
Tallblonde,,,,Glad you posted that for any newcomers that might see. I did some checking also and this does not look like any of us need to take. Kitty might be skipping but I bet you,,,she is a distributor. Kitty,,,care to share?
Here's what the National Institute of Environmental Health Sciences has to say about it:
"It continued to be widely used as a treatment for rheumatic disease, venereal infections, urinary infections and certain types of cancer, especially leukaemia until its sale was banned in North America due to concern over its potential toxic effect upon the liver. There have been a number of cases of acute or sub-acute hepatitis attributed to the use of this herb and so its internal use is not recommended until further research has been carried out.
A number of cases of acute toxic hepatitis have been attributed to ingestion of a nutritional supplement derived from the leaves of the creosote or greasewood bush (Larrea tridentata), commonly known as chaparral. Use of the supplement appears to have led to serious liver injury and fulminant hepatic failure requiring orthotopic liver transplantation. Chaparral, which grows wild in arid regions of the Southwestern U.S. and Mexico, has been recommended in nonscientific publications for use as a "free radical scavenger" or "antioxidant" to treat a variety of conditions including hepatitis and alcohol withdrawal. Chaparral tea, made from the leaves is also a traditional American Indian medicine. Although the toxin in chaparral has not been definitively identified, a possible active ingredient is a potent antioxidant, nordihydroguaiaretic acid (NDGA), which can act in low doses as a lipoxygenase pathway inhibitor but at high doses as an inhibitor of cycloaxygenase pathways as well as cytochrome P-450 activity in rats.
Based on the information above, one might conclude that chaparral-induced liver injury is more likely to arise and/or to be more severe in former alcohol abusers or other people with preexisting liver disease."
"It continued to be widely used as a treatment for rheumatic disease, venereal infections, urinary infections and certain types of cancer, especially leukaemia until its sale was banned in North America due to concern over its potential toxic effect upon the liver. There have been a number of cases of acute or sub-acute hepatitis attributed to the use of this herb and so its internal use is not recommended until further research has been carried out.
A number of cases of acute toxic hepatitis have been attributed to ingestion of a nutritional supplement derived from the leaves of the creosote or greasewood bush (Larrea tridentata), commonly known as chaparral. Use of the supplement appears to have led to serious liver injury and fulminant hepatic failure requiring orthotopic liver transplantation. Chaparral, which grows wild in arid regions of the Southwestern U.S. and Mexico, has been recommended in nonscientific publications for use as a "free radical scavenger" or "antioxidant" to treat a variety of conditions including hepatitis and alcohol withdrawal. Chaparral tea, made from the leaves is also a traditional American Indian medicine. Although the toxin in chaparral has not been definitively identified, a possible active ingredient is a potent antioxidant, nordihydroguaiaretic acid (NDGA), which can act in low doses as a lipoxygenase pathway inhibitor but at high doses as an inhibitor of cycloaxygenase pathways as well as cytochrome P-450 activity in rats.
Based on the information above, one might conclude that chaparral-induced liver injury is more likely to arise and/or to be more severe in former alcohol abusers or other people with preexisting liver disease."
You don't know me -- I've been lurking in the shadows reading. I'm ready to come out of the keyboard and say HI!
Want to share my experience in the hopes it will benefit others.
I'm female, 51, geno 1, VL 11 million, contracted Hep C from blood transfusion in '82, felt vaguely ill for years, knew something was wrong but numerous docs could not diagnose 'til I went to a integrated medicine MD Dec 04 (yes, he actually uses herbs and chelation therapy when warranted) and he's funny as hell. I cried when he dx me and said "what about sex?" and he turned slowly with a big smile and said, "kittyface, I'm just the doctor, I can't provide you with any sex." Talk about some much needed comic relief.
Anyway. . .FibroSpect II test shows somewhere between 0-1 fibrosis and my enzymes are normal. However, have been slightly ill consistently and catch every bug that flies around for 20+ years so decide to participate in trial of NM283 (polymerase inhibitor) plus pegintron. The trial coordinator was VERY persuasive. Landed in the ER first night vomiting so hard blood vessels in my eyes and face burst. I was not pretty and that bothered me. You Girlfriends can relate.
I quit the trial after one week due to fear of and unwillingness to tolerate sx -- I felt like a poisoned lab rat. I think it was the pegintron rather than the NM283 that really had me going. The docs didn't want me to slip out of their precious study -- offered me ritalin and whatnot but my body balked at the thought of yet more drugs.
I'm not writing to convey my medical history although I find it endlessly fascinating and hope you do too. I'm addressing those souls who have decided to wait on tx and need something to help abate symptoms of low grade fever, fatigue, swollen glands, general malaise. I've tried many things over the past 20 years but recently started taking Shegoi (Oy, it's a nice Jewish herb)(and that's not an anti-semitic remark, BTW, b/c I'm one half Jewish, the top half) anyway, back to Shegoi. (see how good I feel?)
Shegoi is the patented toxin-free version of the herb chapparel which has anti-viral properties that fight the Epstein Barr and herpes virus. I figured it would work on Hep C and it does. After a week on this stuff I felt such a sense of energy and well being I was skipping in grocery stores and striking up conversations with perfect strangers. I am not kidding. It should be taken with lots of greens and chlorella to cleanse virus die-off in the blood.
To get info about chapparel go to http://larreamed.org/ It states that people with liver disease should not take it BUT Shegoi is chapparel with liver toxins removed. My funny MD gave it the OK. Just google Shegoi for the website. It costs about $39 for a bottle. I'm not a distributor but I bet you can find one.
If you want more info on how to dose I'll be glad to help. For now must go skip.
Want to share my experience in the hopes it will benefit others.
I'm female, 51, geno 1, VL 11 million, contracted Hep C from blood transfusion in '82, felt vaguely ill for years, knew something was wrong but numerous docs could not diagnose 'til I went to a integrated medicine MD Dec 04 (yes, he actually uses herbs and chelation therapy when warranted) and he's funny as hell. I cried when he dx me and said "what about sex?" and he turned slowly with a big smile and said, "kittyface, I'm just the doctor, I can't provide you with any sex." Talk about some much needed comic relief.
Anyway. . .FibroSpect II test shows somewhere between 0-1 fibrosis and my enzymes are normal. However, have been slightly ill consistently and catch every bug that flies around for 20+ years so decide to participate in trial of NM283 (polymerase inhibitor) plus pegintron. The trial coordinator was VERY persuasive. Landed in the ER first night vomiting so hard blood vessels in my eyes and face burst. I was not pretty and that bothered me. You Girlfriends can relate.
I quit the trial after one week due to fear of and unwillingness to tolerate sx -- I felt like a poisoned lab rat. I think it was the pegintron rather than the NM283 that really had me going. The docs didn't want me to slip out of their precious study -- offered me ritalin and whatnot but my body balked at the thought of yet more drugs.
I'm not writing to convey my medical history although I find it endlessly fascinating and hope you do too. I'm addressing those souls who have decided to wait on tx and need something to help abate symptoms of low grade fever, fatigue, swollen glands, general malaise. I've tried many things over the past 20 years but recently started taking Shegoi (Oy, it's a nice Jewish herb)(and that's not an anti-semitic remark, BTW, b/c I'm one half Jewish, the top half) anyway, back to Shegoi. (see how good I feel?)
Shegoi is the patented toxin-free version of the herb chapparel which has anti-viral properties that fight the Epstein Barr and herpes virus. I figured it would work on Hep C and it does. After a week on this stuff I felt such a sense of energy and well being I was skipping in grocery stores and striking up conversations with perfect strangers. I am not kidding. It should be taken with lots of greens and chlorella to cleanse virus die-off in the blood.
To get info about chapparel go to http://larreamed.org/ It states that people with liver disease should not take it BUT Shegoi is chapparel with liver toxins removed. My funny MD gave it the OK. Just google Shegoi for the website. It costs about $39 for a bottle. I'm not a distributor but I bet you can find one.
If you want more info on how to dose I'll be glad to help. For now must go skip.
i got to change the font size in my mac, lol, i am having a hard time reading what i write, pardon moi.
On the thread below titled: "Dealing with the Crazies" you wrote last week (in message C25):
________________________
Laika wrote:
"Have you noticed how sleepy this forum has been lately? A little drama wouldn't be so bad."
________________________
Is that what this is about, Laika? Using someone's benign joke to stir up a little drama? Very interesting.
Susan
________________________
Laika wrote:
"Have you noticed how sleepy this forum has been lately? A little drama wouldn't be so bad."
________________________
Is that what this is about, Laika? Using someone's benign joke to stir up a little drama? Very interesting.
Susan
I know a friend in Tennessee, a non-responder twice, who has a Viral Load of 30,000,000, almost no fibrosis, and normal ALT and AST. However, she does not feel well, and has a problem with fatigue.
Maybe the French know something more then us. We have been very fortunate as Americans,,,to not have fought a war on our homeland. Where France and the European nations have fought many. A friend of mines,,,his father was telling me just 2 days ago about his experience in World War 11,,,,that one thing he never had to worry about was his family at home,,,he always knew they were safe. However,,the europeans fighting a long side of him,,,never knew if their family was safe or if they even had a home to come home to.
Hey, bigots are people too! When you show a little more tolerance, Laika, I'll join you in a round of singing Kum-By-Ya.
I'm glad we have you to police all off-the-cuff-remarks. This board is sorely lacking in political correctness and I'm thrilled that you're armed and ready to turn that around, by golly.
I'll work on limiting critical remarks to:
1. Conservatives
2. Evangelical Christians
3. White males
4. The United State of America
You'll find that no one ever utters a peep when any of the above are attacked.
By the way....I'm of French descent on my mother's side of the family. Thank you for saving me from myself! LOL!
Au Revoir!
Suzanne
I'm glad we have you to police all off-the-cuff-remarks. This board is sorely lacking in political correctness and I'm thrilled that you're armed and ready to turn that around, by golly.
I'll work on limiting critical remarks to:
1. Conservatives
2. Evangelical Christians
3. White males
4. The United State of America
You'll find that no one ever utters a peep when any of the above are attacked.
By the way....I'm of French descent on my mother's side of the family. Thank you for saving me from myself! LOL!
Au Revoir!
Suzanne
If I slam on a few Republicans will that be an adequate mea culpa for you prickly pears? C'mon! Take a chill pill and have a good day! LOL!
Susan
Susan
BTW, were you mentioning that things were rather slow at MH? This thread is an example of how things get "lively" pretty quick, on occassions. ;-] It just hasn't happened in a while.
amen to that, I think they actually show that they know how to think on their own and not worry about kissing US's a**.
I'm not interested in a slam on Republicans. I'm interested in an apology for a bigoted remark. Nice the way you turned it around--we're just TOO sensitive. And the French...well, screw 'em, I guess.
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