Post Edited By Moderator (Pink Grandma) : 7/20/2009 9:56:08 AM (GMT-6)
Justducky, welcome to the forum. You can Google info on LDN. I meant to discuss this with my hepatologist on my last visit, but because there were problems with getting the CT scan done, and she is booked up months in advance, I never did see her...just got the results over the phone. I was diagnosed with hep C in '93 and also have survived liver cancer (2 years cancer free now.)
Since LDN is by prescription, I imagine if your doctor is willing to give it a try with you that there is very specific dosing information. Unlike supplements, it is approved by the FDA, meaning that there is a standard applied to it in terms of quality and recommended dosing. If your doctor is willing to prescribe this, then he will have looked into it and know what to do--or will do so. You'll have to trust him or another hepatologist on this.
The "combo" is interferon and ribovirin. That's the standard treatment now. However, now in trials and expected to be available in 2010 is that combo plus a 3rd drug, telaprevir, in which the combination only has to be taken for 24 weeks instead of 48. A recent study at Duke using all three drugs, cured 67%. The bad news is that while it cured more people than the regular combo, many more had to drop out due to side effects.
Well, I can agree that there hasn't been enough study of LDN yet and that it isn't in common use. It's up to you as to whether you want to get a second opinion.
I can tell you my personal story: I started interferon (the only treatment available at that time) shortly after I was diagnosed with hep C. I was on it for about 6 or 7 wks., but my white count plummeted so low that I was taken off of it. The doctor first tried reducing the dosage, but it made no difference. A couple of months later, with a different doctor, I went on it again. Same thing happened, and after about 4 weeks I took myself off of it. From that point to the present, I had no treatment at all. However, because of the fatigue, I was only able to work P/T from '94 to 2005, when I finally was approved for SSD. In 2005, I was diagnosed with liver cancer. This is a possible consequence of hep C left untreated. I went to Mayo, and thanks to their treatment and surgery, I have been cancer free for 2 yrs. I do have cirrhosis. I'm at the point of trying to decide if I want treatment. I'm sort of holding out for the new one that I spoke about in my previous post. I know that my hepatologist is also on the lookout for trials for me that she thinks might suit my diagnosis and present status.
Left untreated, your chance is high of the hep C causing cirrhosis and/or liver cancer and progressing to end-stage liver failure. However, with the good diet that you are on and the supplements that seem to be helping you, the progression can definitely be slowed down. I'm currently just treating with diet and lots of rest. BTW, I'm now 66.
Post Edited (hep93) : 5/30/2009 7:35:45 PM (GMT-6)
Post Edited By Moderator (Pink Grandma) : 8/8/2009 11:41:16 AM (GMT-6)
Post Edited (hep93) : 7/19/2009 4:38:33 PM (GMT-6)