I understand that Liquorice root is an anti-viral of specific benefit, but not the de-glycyrrhizinated liquorice preparations commonly on offer, must be the complete root.
Have not tried Blueberry leaf and not intending too do so, as I expect to be virus free following a 12 weeks course of Ribavirin and Viekirax/Exveria. ( an alternative to Harvoni)
Presently awaiting final blood results, intermediates have shown very good reductions of a high viral load.
Yes, I was terrified by the scare stories, particularly since I have M.E. and this treatment would only exaggerate the symptoms I already suffer independently from Hep. C.
However, not wanting to have another hepatic resection for cancer, I went for the lesser of evils and the chance to be virus-free, if at some risk.
The risk is greatly lessened by close and attentive monitoring; so you do need a consultant who you can trust to do the necessary. If your liver is otherwise "good", you have little to worry about; the treatment is far more risky where there is cirrhosis or other liver damage.
I would also point out that 11 years ago when first diagnosed I had a low viral load and declined Interferon because I had M.E. and already felt very poorly indeed. Fast forward to 2015 and I have high viral load and a 3.5cm HCC. Apart from these small matters, my liver function is good with some potentially reversible fibrosis.
I always remind my self, that on these forums we usually get the bad news, the successes are too busy getting on with their lives and making up for lost time. If you ever look on a motor car forum with a view to buying a particular model, you will see what I mean.
I understand that at my hospital, Hep. C patients are not routinely tested for the HCC marker Alpha fetoprotein (Afp) and it might be a good idea to ask for this test from time to time.
My then consultant was sensitive enough to my concerns to order it for me, otherwise undoubtedly the cancer would have been found too late.
I am as hostile to allopathic medicine as the next man, however I suggest you consider very carefully before declining the allopathic antivirals as you are at very high risk for HCC.
I also should say, that following the treatment, I have regained a long-lost appetite, although I ate well it was out of duty with no pleasure for many years and a grey mist has lifted allowing me a new clarity of purpose; giving me a new will to live in spite of many obstacles I face.
I know lot of people who had done teraphy with Harv ledipasvir 90mg-Sofosbuvir400mg with no side effect or other major problem..so if you get the chance it s definitely worth the shot to try.
I was on a long waiting list in Italy (2-3 years) but i didn't want to wait..i have been to India.spent beautiful time in nice hotel and in Ayurveda place (just to try) and had consultation at international clinic and got my teraphy with generic Harvoni produced by Mylan....and got cured after 12 smooth weeks of teraphy which cost me about 1000 euro !
Nice one, Jolly Jenny...but before you slander me any further, do not forget that I have all the evidence of your untamed, confused ego and obscenely abusive retorts.
Anybody concerned about this please let me know.....
Namaste Pateo..I agree completely I am no better than you but at least I admit it to myself and to others.
You O Venerable One do not.
Still I have no wish to slander you as I recognise fundamentally you are a decent,caringt person who has the airs and graces befitting his Venerable Status
Apologise again, and be completely reassured any further messaging will be met with unfailing courtesy and respect,without sarcasm or desire for verbal retaliation.
Like I said, hep C has all kinds of insidious, adverse, subtle effects, including on the brain, affecting ones powers of discernment, causing depression and confusion.
Like: " I've been down so long, it seems like up to me"
Although the numbers come up as OK from the blood tests, I am feeling very much relieved in a certain way, a grey cloud has lifted and a source of subtle energy released since I completed the course. Not withstanding I still have all the symptoms of M.E. rather badly I have new sense of brightness and clarity and ability to cope with those symptoms.
May I venture the thought that "Holistic" means appertaining to or of "The Whole", in this case the "whole person". Logically since each one of us is part of the whole (universe) and that whole includes all of the sciences for instance medicine and pharmacology a truly Holistic approach to healing would include the consideration of the whole field including Naturopathic, Homeopathic and Allopathic medicines.
All medicines are poisons and even homeopathic remedies can have serious adverse effects if wrongly administered....so I am saying, your fears are groundless and " Don't knock it before you try it".
I've been there, done that and got the t-shirt, OK?
If I couldn't turn the other cheek I wouldn't be much of a priest, would I?
And who said I'm a Tibetan monk?
Not me.....
I would be glad if you'd take some time out and read through all of our extensive correspondence thoroughly, without knee-jerk re-actions to imaginary insults that exist only in your own mind.
I can understand from your brief history that you sometimes think the whole world is against you and trying to put you down.
I am not and I only want to lift you up...in order to give someone a lift one has to get down to their level......
I am sorry if my style comes across as patronising or with "airs and graces"; I can only say that if you know me in person you will find that I am not in any way "holier than thou".
To the majority I'm merely a crackpot old hippy who is too much brain damaged to become a yuppie....a welfare parasite.
It took me over twenty years of grief to get a diagnosis for M.E.
Living with that attitude from those on whom one relies to provide health care does not encourage delusions of grandeur.
But trying to persuade them that you don't have inflated ideas or religious delusions is like trying to explain a colour to a born blind idiot.
I see that I made a big mistake there...when I said " Although the numbers come up alright on the bloods", that should have been attached to the previous paragraph about insidious effects of Hep C...
I theorise that although its not effecting in a measurable way the liver function, it is generating some toxic effluent that affects the brain....slowly hypnotises before it pounces.
In fact MY last blood test, which was on the last day of the treatment, is inconclusive i.e. still positive but unquantifiable.
The test does not count the number of actual virus, but measures some other indicator of their presence, and extrapolates the number from that.
Tell the FDA to Disclose All Potential Side Effects of Harvoni, Hepatitis C Medication
Katrina Williams United States
It is estimated that 150 million people world-wide may have the Hepatitis C Virus. On October 10, 2014, the FDA approved the fixed-dose combination capsule of ledipasvir plus sofosbuvir (Harvoni; Gilead Sciences) for the treatment of patients with chronic HCV genotype 1 infection. Ledipasvir plus sofosbuvir is the first combination tablet approved for the treatment of patients with chronic HCV genotype 1 infection, as well as, the first approved regimen that does not require the use of interferon or ribavirin. The FDA approved the drug under breakthrough therapy designation, which is intended to expedite the development and review of drugs for serious conditions.
The FDA, in their own reporting system of adverse events (FAERS), show dozens of reports of sudden death, respiratory failure, renal failure, cardiac failure, hepatic failure and as well as hundreds of reports of a myriad of other problems, yet the public hears none of this and doctors are denying problems. One can go on any blog to read statements from patients taking or who have taken the drug and are reporting multiple problems beyond those stated by Gilead to include, but not limited to, long-term problems of tinnitus, severe neuropathy, joint pain, muscle pain, constant headache, chronic fatigue, heart issues, lung issues, and vision problems. A letter to the FDA asking them to inform the public of these problems resulted in a response that they informed the public about deaths resulting from an interaction with the drug Amiodarone, which causes a slowing of the heart. .
How can this be the only information provided to the public? What about those families who have lost loved ones taking only Harvoni, and the many who report long-term problems and decreased quality of life? The drug has been on the market since October 14, 2014; and the only warning is an interaction with Amiodarone? How many more have to die, be crippled or have loss of quality of life before the public is informed? I personally now suffer from a multitude of problems more than a year post treatment with decreased quality of life, as do many others. Although “virus free,” I, for one, would not have taken Harvoni had I known the potential additional dangers to my health. The prescribing physician told me it was safe.
The FDA is responsible for protecting the public health by assuring the safety, efficacy and security of human and veterinary drugs, biological products, medical devices, our nation's food supply, cosmetics, and products that emit radiation. FDA is also responsible for advancing the public health by helping to speed innovations that make medicines more effective, safer, and more affordable and by helping the public get the accurate, science-based information they need to use medicines and foods to maintain and improve their health. New drugs and biologics must be proven safe and effective to FDA's satisfaction before companies can market them. FDA does not develop or test products. FDA experts review the results of laboratory, animal, and human clinical testing done by manufacturers. If FDA grants an approval, it means the agency has determined the benefits of the product outweigh the risks for the intended use. Why is the FDA withholding information from the public so WE can weigh the risks?
Harvoni’s efficacy prior to release was evaluated in three clinical trials enrolling only 1,518 participants. Of those participants, a significant number were given a placebo, some only Harvoni, and others Harvoni with Ribaviran. Thus, there were very few individuals who actually took the drug before release to the public. In contacting the manufacturer, Gilead Sciences, I was told that the company does not do any follow up of patients who take the medication. The dispensing information lists fatigue, headache, nausea, diarrhea and insomnia as side effects. In March 2015, after a reported death, the FDA released a warning to get medical help right away if you take Amiodarone with Harvoni as it may cause a serious slowing of the heart. What about all the other problems people are suffering from during and post treatment? Why has the public not heard about that? Why are doctors not alerting us? Why do we have to go to patient websites to find out the truth from other patients?
In an article, “FDA’s Early Warning Signal is Broken” (rxview.adverahealth.com/fda... it states, “FDA was actually in violation of the law for the better part of 2015 (and 2012-2014 depending on how you read the law) by failing to post quarterly lists of emerging drug safety issues.”
Two advocacy groups, Treatment Action Group and the Global Health Justice Partnership, asked Gilead for patient-level trial data for the Sovaldi and Harvoni drugs. (blogs.wsj.com/pharmalot/201... They sought the data, because the drugs are widely prescribed due to a very high cure rate, and because the FDA approved the drugs as part of a regulatory process known as a breakthrough designation, which accelerated the review process. This “may increase the risk of gaps in drug efficacy going undiscovered or that side effects or [interactions with other drugs] will go unnoticed,” according to a lawsuit now filed. “Independent analysis of patient-level clinical trial data is essential to identify and bring to light unresolved safety and efficacy issues.” Gilead Sciences did not respond to the request so they turned to the FDA in December 2014. The FDA denied their expedited request and was told it would take 18-24 months before they could receive the information.
Failure to timely disclose information on the potential dangers of Harvoni is unacceptable!
Tell Dr. Robert M. Callif, Commissioner of the FDA, and Dr. Janet Woodcock, Director Center for Evaluation and Research (CDER) that as a matter of public safety the FDA must immediately release notices to the public about all potential side effects related to Harvoni. This will allow those patients considering taking Harvoni to be properly informed of the potential devastating side effects, so they can make an informed decision whether or not to take the drug.
Gives me a head-ache just to scroll quickly through that lot ......
Jenny, its all academic for you so why worry?
Unless you have got a few quid to go to India or anywhere there is simply no point in losing your mind about it.
In 18 months time the game will have changed. Maybe they will have discovered exactly why it works for some and not for others. You might be offered something completely different.
You might have an inoperable tumour on your liver in eighteen months time; you might have a head-on smash-up on the way to the shops the day after tomorrow.
OK, its a gamble; life is a gamble and sooner or later we will die of one thing or another. But one thing is sure, nobody is forcing Harvoni down your throat.
Another thing: worrying about imponderables is not helping in any way at all.
Relax, eat healthy, give your liver all the help you can and simply enjoy whatever time is left to you to live. It may be shorter than you think; it may be a lot longer...
Many happy returns, there's a prezzy going in the post.
I am very sorry , i did not intend to offend or give you trouble...i just read you were on wait list as well for Harv and just wanted to share my simple experience. i really apologise if you felt offended somehow.I sincerely apologise if it s the case
I believe I've had Hep C for close to 50 years. Yes, since the 70' s. I've practiced pretty good nutrition, exercise, abstained from alcohol. I e e swish I would been more vigilant in watching my medications though; like taking Estrace for 9 months. I believe that caused me to have 6 hhemangiomas. And, keep on with your supplements. Never tried blueberry leaf, though. You never know if it may cure or get your count down. My fibrosis level all these years was stage 0, until the Estrace usage, then it went to stage 1.another supplement is the Reishi mushroom, look into it and stay focused that way. My count has been under 1million all these years, but also increased after the Estracevto over 2million. Watch your medications. There is hope, I am hep c free - finished my Mevyret dosing for 8 weeks.
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