Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Yes, Alley, There's no doubt that I was getting a strong sales pitch from this woman. To give her a little credit, I believe her motivation wasn't from selling but because she is a total convert to this product. But she did try to tell me it was a food source and when I explained why I couldn't take iron supplements she just didn't hear me. She did forward me a response from someone in the comapany that she emailed asking about the iron. They said it is a synthetic additive and anyone with questions should follow the advice of their doctor. Then they referred to the " iron controversy " . Since I was diagnosed with HCV there are only 2 things my doctors told me unequivocally not to do: No Alcohol; No iron. I wasn't aware there was any controversy! Oh well. There's a 30-day money back quarantee for this supplement. So I guess I haven't lost anything. ) Pam in Maine >From: " Shshonee " <shshonee@...> >Reply-Hepatitis C ><Hepatitis C > >Subject: Re: low platelets, appointment with specialist >to start t... >Date: Fri, 20 Aug 2004 15:45:28 -0500 > >Yeah, insurance/medicare have their own rules but some do some don't. Riba >is FDA approved for HCV isn't it? why it's covered? > >Anne, if you have mild fibrosis (like stage 0 - 1) AND are geno 1, my >advice is don't do treatment. Just a personal opinion. I'll support you >either way. > >Yeah, Claudine, hemothingy! > >Taking iron with HCV is something that needs to be done with a doctor's >approval, my opinion. I don't avoid foods with iron, but I don't take any >supplements with iron. You have to look at where your liver is and what >you normally eat, etc. There are all kinds of scams to make money off >people, HCV is no different. Some people will tell you anything just to >make a buck. Always check with your doc. > >Willem you are too funny Yes it IS the weekend! ooooooooooo! > >Alley > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 cable mom <parend53@...> wrote: They said it is a synthetic additive and anyone with questions should follow the advice of their doctor. Then they referred to the " iron controversy " . Since I was diagnosed with HCV there are only 2 things my doctors told me unequivocally not to do: No Alcohol; No iron. I wasn't aware there was any controversy! There really isn't any controversy about iron in the HCV world. It is generally accepted that unless there are unusual circumstances you should not take iron supplements. However, there is a controversy in the " regular " world over iron supplements. Many people believe that iron should not be supplemented without documented iron-deficiency, while others feel it's ok. Iron can be very toxic to ANYONE if taken in too large amounts. Iron is one of the leading causes of poisening deaths in children. (Those kiddy vitamin/mineral supplements taste like candy!) On the other hand, we do need some iron! Most people will get enough from food sources if they eat a well balanced, nutritious diet. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 You are so right...you do have to pick the right time for your battles. And right now the most important thing is that she gets her procrit. But when she has finished treatment and the bills start rolling in, then you can consider contesting the issue. I'd contact the American Cancer Society and ask for their booklet that lists the various " treatments " used in chemo and their side effects. Then you will have proof that it is considered chemo when you decide to load your gun and go a huntin' Re: low platelets, appointment with specialist to start t... I totally agree with you, Tat, but I think you can understand at times you have to just sit tight and choose the timing of the challenge. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 I agree with Claudine. Putting iron in supplements has caused more problems than it's fixed, and that's for non-heppers. You wanna eat some spinach at dinner, I'd say go for it. How much darn spinach can one eat anyway? lol Unless you're a spinach addict. But vitamins. People take those every day. Or like me, sometimes twice a day. And I don't by my grandkids vitamins with iron. I sneak iron rich foods into their diet when they aren't looking. So icksnay on the ironsay! Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Tammie, I also tested postive for hep C & B back in 1989, when the test first became available in Dallas. I had donated blood and thank goodness I had or I might never have known. I wish now I had not done treatment, even though I faired very well during treatment, better than 99% who do treatment. However, the problems treatment left me with weren't nice - fibromyalgia, chronic fatigue, memory loss, insomnia, depression. Others I've known have been left with permanent diabetes, thyroid problems, heart problems, tinnitus, and other things I can't remember right now. Treatment is a risk. You have to judge whether the risk is worth it. Usually, it is our only choice, but that is because our liver is failing. If our liver is in good shape, and we are the stubborn geno 1, esp 1b, then doctors usually advise waiting a bit, not making a rush decision. Enjoy your health while you've got it. Because there's no promise that health will continue after treatment. Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 HI.Don.t post much lately because I.am cured,according to the avaiable test,but I like to comment on this on.I.am a long time past TX and one thing has changed permanently is my behaviour.I get very quickly agitated,edgy,quick tempered.More then before.I blame it on the TX.Any info on that.?.Willem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 In a message dated 8/22/2004 1:42:41 PM Eastern Daylight Time, lands142@... writes: HI.Don.t post much lately because I.am cured,according to the avaiable test,but I like to comment on this on.I.am a long time past TX and one thing has changed permanently is my behaviour.I get very quickly agitated,edgy,quick tempered.More then before.I blame it on the TX.Any info on that.?.Willem. Willem, just because you're cured doesn't mean you have to go away. TX, particularly with riba does change us. Some diet changes might help that, but exercise and weeding is what I use. I take my little trowel out and dig in the dirt. You can always pretend that a clod is somebody's head. Not only does it disapate anger, it's also productive. Just a thought. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 If our liver is in good shape, and we are the stubborn geno 1, esp 1b, then doctors usually advise waiting a bit, not making a rush decision. My doc didn't advise me to wait at all. He was ready for me to start the meds. I hope that I didn't make a mistake by doing this, but it is too late now. I will not back out. I will see this to the end. I never now about docs. Are they really interested in treating me or experimenting on me? Who knows, but once again, I am in it for the long haul. <><TammieD><> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 If our liver is in good shape, and we are the stubborn geno 1, esp 1b, then doctors usually advise waiting a bit, not making a rush decision. My doc didn't advise me to wait at all. He was ready for me to start the meds. I hope that I didn't make a mistake by doing this, but it is too late now. I will not back out. I will see this to the end. I never now about docs. Are they really interested in treating me or experimenting on me? Who knows, but once again, I am in it for the long haul. <><TammieD><> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 If our liver is in good shape, and we are the stubborn geno 1, esp 1b, then doctors usually advise waiting a bit, not making a rush decision. My doc didn't advise me to wait at all. He was ready for me to start the meds. I hope that I didn't make a mistake by doing this, but it is too late now. I will not back out. I will see this to the end. I never now about docs. Are they really interested in treating me or experimenting on me? Who knows, but once again, I am in it for the long haul. <><TammieD><> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 If our liver is in good shape, and we are the stubborn geno 1, esp 1b, then doctors usually advise waiting a bit, not making a rush decision. My doc didn't advise me to wait at all. He was ready for me to start the meds. I hope that I didn't make a mistake by doing this, but it is too late now. I will not back out. I will see this to the end. I never now about docs. Are they really interested in treating me or experimenting on me? Who knows, but once again, I am in it for the long haul. <><TammieD><> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 OK I'll retract " most " and say " mine " , who was the head of Baylor Dallas gastro. He said doing treatment early when there's little damage, low viral load, good alt/ast, could cause more problems than it solves with geno 1's. Peg fortunately has had better results, but not much for geno 1's. I think these docs must be getting a kickback or something. I sometimes wonder where their head is with this " treatment for everyone " philosophy. Just my humble lay person's opinion. I like that post on the genotypes Claudine. Very interesting. Now I understand a little more why even with high dose interferon, I STILL got the darn thing! Good luck on your treatment. Drink lots of fluids, esp water. Be sure your doc will treat the sides too. And take it one day at a time. Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 OK I'll retract " most " and say " mine " , who was the head of Baylor Dallas gastro. He said doing treatment early when there's little damage, low viral load, good alt/ast, could cause more problems than it solves with geno 1's. Peg fortunately has had better results, but not much for geno 1's. I think these docs must be getting a kickback or something. I sometimes wonder where their head is with this " treatment for everyone " philosophy. Just my humble lay person's opinion. I like that post on the genotypes Claudine. Very interesting. Now I understand a little more why even with high dose interferon, I STILL got the darn thing! Good luck on your treatment. Drink lots of fluids, esp water. Be sure your doc will treat the sides too. And take it one day at a time. Alley Quote Link to comment Share on other sites More sharing options...
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