Unsure of What Path to Take

By scaredangel

2 min read

Hi everyone!
I am torn apart within myself, but I need to make that most difficult decision of my life.
I was diagnosed with hep C in 2015, but not right away. I was in the ER room a couple of times and even spent a week in a hospital literally dying there from pain and inability to eat anything, but the doctors had no idea what was wrong with me and eventually sent me home. It was the scariest for me as I was all by my self with the unknown illness. The doctors told me that I was weak because I wasn't eating anything! They demanded I would start eating and brought me their tomato soup and frozen chocolate yogurt. Just looking at those made me feel more nausea than before. They sent me home with IBS diagnosis and no tips for what to do with that. I spent months at home healing myself with all the tools I have learned while being in the holistic field.

For many many years I had been trying to figure out how to cure my autoimmune disease and chronic fatigue which doctors put into RA category as my Rheumatoid factor in the blood was present. My ER visit was telling me that it was not ER, but was something else hidden in me for long and acting out finally. After I got better in 4 months, I went to a new rheumatologist with my story and after a few blood tests he sent me to do I received his call about hep C! I was shocked, not because of my diagnosis (I was glad to finally have it!), but because I have been complaining on the right abdominal pain for many many years and no one sent me for this hep C blood test because... as my physician said... my other liver tests were normal, and they are still normal!

But I have gone through another ER in 2016 and know now that I need to either learn to live with hep C or risk to take the medicine. I am in constant pain even though with the holistic approach (homeopathy, diet, supplements, acupuncture, etc) I am functioning OK, but can't commit to working yet, my brain can be in a fog, or occasionally I will just lay in bed fully exhausted.

To Treat or Not To Treat?

My doctor is suggesting Sovaldi and Ribavirin for my hep C, but I am scared to take the drugs as I have been having a weak immune system since childhood , and also I have anemia.

I have met one guy who finished Harvoni and got cured with out having any side effects (yea! happy for him!:), and I have heard a different story from my friend whose friend developed liver cancer after taking the drug and died soon :(

So, I am asking myself "what would be my story?" I decided to register on this site and maybe get some response that could help me to get clarity about my choice. My doctors appointment is on April 29th and she is waiting for my decision.

Thanks in advance!

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CaseyH Moderator
Hi ScaredAngel! I'm so sorry to hear about all of this, and everything you have had to endure. You are truly a warrior! I'm so glad to hear that you became an advocate for your health, and continued to pursue answers, despite the frustration. That is truly admirable. Although others may be able to give you feedback on these medications and their experiences, we still recommend working with your healthcare provider closely, as different treatments can affect different individuals in various ways! In the meantime, I found two articles on Sovaldi and Ribavirin, since those were the ones your doctor was recommending. You can find them here <a href='https://hepatitisc.net/treatment/sovaldi-sofosbuvir' target='_blank'>https://hepatitisc.net/treatment/sovaldi-sofosbuvir/</a> and here <a href='https://hepatitisc.net/treatment/ribavirin' target='_blank'>https://hepatitisc.net/treatment/ribavirin/</a> Please keep us posted on how your appointment goes! We're here for you, and want to be by your side throughout this journey! Sending hugs! Casey, <a href='https://hepatitisc.net' target='_blank'>HepatitisC.net</a> Team
1. scaredangel Member
 Dear Casey, thank you for your support and all the helpful links! I have checked them and many other videos of people who used Sovaldi and the analog of it, Sofosbuvir in Europe and Asia. Some people rave about it as they haven't had any side affects and the virus was gone in weeks, and that gives you hope, but some report difficulties with mental functioning and exhaustion and so I try be in-tune with body and start the treatment after feeling very confident about my decision. I had my appointment with my gastroenterologist a few days ago, and she has voiced her concerns about my heart rate. I will see a cardiologist soon, and be monitored for my heart rate for a few weeks and then should be made a final decision. Meanwhile, I am doing all the alternative methods, and try to maintain my positive mood despite the acute pain I have been feeling in my liver and the recent addition: headache. Liver gets active in spring, so I blame my relapse on that 😀 But I am glad I still can function and do house chores for my family and enjoy the weather and my daily walks. I will report on my heart tests later. Best wishes to all who are walking "HepC" journeys! Together we have more chances to make it 😀
2. scaredangel Member
 Watchandpray, I love your Login name ! 😁 I do watch and do pray every day! I will include you in my prayers too! 😀 When did you get your diagnosis? If you are young, I'd recommend you to keep your focus steady and continue with your juices and etc. I was going on and off with juicing as cold winters get in a way.... In order for me right down what I have tried in the last few years I'd need to write a blog … or a few 😀 The thing is I have been having this illness for more than 20-years not knowing about it and of what was making me feel nauseous, tired and in pain periodically. I am not a dug user, and so nobody checked me for HepC. Some doctors would say the pain is psychological as I was a child of an alcoholic. My dad was a heavy drinker, and had liver issues, but never wanted to heal himself and died at 62. Looks like I am healing HIS liver 😀 as I was never a drinker either. The only thing I can blame on getting HepC is that I was participating in the blood drives in Ukraine in the 80s when no-one knew about HepC. I also had a C-section in 1993 and could get it then. Who knows now? But the virus has been spreading there feeling comfy in my body, and my body got used to it too. Changing that pattern was and still is a big challenge as it is in your brain, even your relationships and lifestyle if you would want to see it. I have started my search for getting well in 2001 and yes, I have changed so many things and became very spiritual and an advocate for alternative ways, but still couldn't win fully my health back. And when finally lThe universe has revealed to me my hidden enemy in 2015 and I said, " Ahha! I knew it, I knew it! Here is the evidence I wasn't crazy complaining to my doctors" I also started to understand that I am truly scared to die. My faith is under test. My body's immune system has exhausted its resources, my finances got drained during the battle too and my marriage is in crisis… Where should I go for strength, courage, hope and support? You are right : a prayer is the only thing that keep many people afloat and I start and finish my day with it, and that gives me enough energy for another step, another day and another new recipe for my liver 😀 Blessings to you! Whatever you are doing is right, and your way is your unique path of winning this battle!
sassysurvivor Member
I was diagnosed in 1998 hep C geno type a1 the treatment that was offered had a 30% chance I was told and I had 13% of my liver left. I started researching and found wobenzyme N & Reishi Mushroom together with milk thistle was being used in europe & Japan and the studies showed 99% cure So I refused Dr treatment went home on hospis. Started this treatment & one year later this horrible stuff in my blood was undetectable. So here I am 20 years later. The side effects were nothing compared to modern drugs just some nausea that got better in about two months. So regimregimane
1. sassysurvivor Member
 4-8 Wobenzyme per day As per your tolerance Reishi Mushroom 1-2 pills per day 1 milk thistle per day No alcohol not even on your skin perfume or no such. Lots of filtered water Good luck. God bless.
scaredangel Member
Hi <a href='https://hepatitisc.net' target='_blank'>HepatitisC.net</a> Team! I decided to write an update for my story that might be helpful to others! A few months ago, in April 2017, I posted my message about having a hard time to make up my mind about getting the medical treatment for Hep C. Good news for me is that I am already 3 weeks in the treatment with the drug Epclusa and I feel very good! No side effects so far!!! What I have learned along the way until I reached my point of confident decision making is I had to develop trust in my own intuition, and through listening to many many opinions of various doctors and alternative health practitioners , researchers, and stories of other people I had to check with my own body and mind if I was ready for not only making my choice, but most of all for dealing with any following up consequences. I have had to learn and practice saying "NO" many times (and it was very challenging for me!) until I felt "YES"! And I believe now that having 100% "YES" for something, it is at least a sense of peace for the mind and a better start😀 I have recognized after 2 years of seeking help for Hep C, it has grown me from a powerless child state (scared and looking for someone who could take responsibility for her health and her choices) to a confident adult who makes her own decisions. I developed a my own healing plan by picking the right combination among all the offered information, treatments for Hep C (modern and not) , and now I take FULL responsibility for my decisions and actions and results of that. That freed me from being scared, dependent and disoriented! When I was finally ready for taking medicine (acupuncture, Chinese herbs, and nutrition have helped me to boost my immune system and raise my B12 and iron to function well), my doctor suddenly surprised me in June by changing her medical plan for me to a new drug EPCLUSA! She said EPCLUSA was a better medication for my genotype with 99% success rate and available for me now. I was happy to hear that and also glad that I wasn't hurrying up with taking Ribovirin and Sofosbuvir in April. I suddenly felt an amazing trust in my intuitive feeling to wait and check with my self again and again if I was ready to put some unfamiliar substance in my body and sure of not harming myself. What I know now is that there is NO RULE that would be working for everyone in terms of what, when and how. My doctor and I wasn't sure HOW we could get EPCLUSA for me and if my insurance would cover it, but it was a relief for both of us that we finally AGREE on the treatment! 😀 And after a month of the deligent work of her nurse I received a letter that my medication would be fully covered! That was a miracle for me! One more thing, I'd want to share. I have been listening to homeopathic, naturopathic and holistic practitioners who were VERY against allopathic medicine, criticizing it and stressing me out with possible bad results. I would leave their office being anxious. I have been to mainstream doctors who would tell me homeopathy is trash, and if I want to waste my money I can put them in a trash can right away. I felt critisized and shamed. I have heard from practitioners who'd worship spiritual approach to healing, but against science as it is not from God ( !! ?!!). I have been listening to those who would be great in what they do, but would want me to do what THEY say, and not to follow MY OWN voice. And the conflict of two systems-approaches that is present in our society was my own inner battle for a long while. I didn't want to be used to prove any point of others, but to loose myself in that battle. I have been used in my parents battle too often for their power, and so I resisted for the first time to in the same position again. I finally wanted to WIN MY HEALTH and get my voice, peace and power back to me as I never had it since being a child in a dysfunctional, alcoholic family. As soon as I made my own peace with each of the systems, and stopped visiting one-way minded professionals in any of the field, I have discovered people who trusted ME and saw me AS THE ONLY PERFECT GUIDE AND SOURCE FOR MY HEALING. I am so grateful that I found a doctor who wasn't pushing me into her agenda, but was open to my active participation in my healing! I found amazing energy healer/ massage therapist who encouraged me to do what I felt was right for me! I felt never more blessed in my life! I hope my story will inspire you to heal your illness. Liver is an organ for filtering and purifying blood, and so I was able to learn how to filter and purify my mind while restoring that ability in my liver, and I believe that my addiction to being helpless, dependent, and powerless victim is gone! Thank you to everyone, who also shared their stories here! Thank for this website that allowed me to express my thoughts, doubts and feelings of unease when I needed to do it! I will update how my treatment will be going. I will be finishing my 3-months plan in October. Wish me luck! 😀 Bless you all for being courageous on your way to Health, Abundance and Freedom!
1. CaseyH Moderator
 Oh my goodness, ScaredAngel! What an AMAZING update! There is so much in there, I don't even know where to start! I'll try to just hit a few major ideas so I don't end up writing you too much! I feel like I could honestly go on for hours regarding all of the wonderful things you've shared!! First of all, YAY that the Epclusa has been well-tolerated so far and was completely covered!!! That is FANTASTIC!!! I'm so so happy for you! I'm also so beyond glad to hear about your personal transformation. I am so inspired by you, and reading that just made my night (on top of everything else you've shared!). Also, I'm very impressed with your ability to balance many different aspects of your care, specifically the allopathic side and natural and alternative sides. I think that is a wonderful perspective to take on your care, and I'm blown away not only by your great perspective, but also your ability to wait for, seek, and find a team that values your opinion! You're so right, YOU and your comfort, support, and strength are a HUGE part of your healing! Geez, I'm just so happy reading all of this! As I've said, I could go on forever regarding this, but to save you from a Saturday night novel, I'll pause for now. PLEASE keep us posted on everything! We're eager to hear how the Epclusa treatment unfolds! Sending hugs and positive thoughts your way! -Casey, <a href='https://hepatitisc.net' target='_blank'>HepatitisC.net</a> Team
scaredangel Member
YEAAAY FOR ALL YOUR WORDS, CaseyH !!! They also made my day as it was a very long day, challenging, exciting and sad at the same time ( I drove my son to his college and it was sad for us to part and say bye to each other for the first time) But the good thing is I was feeling well the whole day despite all the stresses of the day and the necessity of giving my blood for my first HepC load test since starting my medication! I will definitely post the results of my blood test after I get them. In two days I am celebrating my 50th birthday and feel like it would be my best birthday ever as there is something truly wonderful to celebrate : some deep inner change for better! I am grateful for your message and kind support!!! So happy to share my journey with you! Best wishes to all on the same challenging journey toward health! Blessings!
1. CaseyH Moderator
 Hi ScaredAngel! I'm so sorry to hear that parting with your son was so hard. My mom and I had a similar experience when I was in college, so I completely understand the way you must be feeling!! I'm sending positive thoughts and wishes your way for happy results from your blood test, and hope you'll keep us posted!! I'm so sorry I'm just seeing this now after your birthday, so HAPPY BELATED BIRTHDAY! I hope you had a wonderful day! Thinking of you, and hope you have a wonderful holiday weekend! -Casey, <a href='https://hepatitisc.net' target='_blank'>HepatitisC.net</a> Team
myofb1 Member
My advice to you is take your medication. I took Harvoni for 8 weeks one pill a day with no side effects. I am cured from HepC. I believe your friend who died of cancer probably had liver damage because of the HepC which it can. I have a friend who needs a liver transplant because of the damage HepC but he took Harvoni and is cured from it. But it isn't a cure for the cancer. Anyhow just thought I'd give you my advice and ET cured!
1. scaredangel Member
 Hi Myofb1, thank you for posting your advice and sharing your story! I actually have posted (if you scroll down the thread, you will see my post) that I decided to take the medication, and I did and just finished my 3-months treatment a few days ago. So far I am feeling stronger and glad that I had no side effects during the time of taking Epclusa for my genotype 2 of HepC. I have no traces of HepC any more in my blood, but I would need more tests in 3 months to be sure of total cure. My liver has been weakened by the virus though and I have developed a fibrosis, but I am glad I can come back to living a better life than before. I have more energy, not much brain fog and can eat most foods, but I need to watch for my diet and level of stress as probably many people should do too even without any illness. I have chronic pain in my liver, but it is nothing comparing to what I had for two years. I plan to come back to work in January, and that is huge! I recommend now the medicine to people I meet with HepC, but with one warning: you need to feel your own body and investigate all possible options before making your own decision because it is important to make your decision with clarity and confidence. Blessings to all!
2. myofb1 Member
 I am very happy for you and you made the right decision. Hope for good health and life from now on.
myofb1 Member
I would take the Harvoni. I did with no side effects and I'm cured now. I would say your friend probably had liver cancer before he got treatment. I have a friend who had Hep C and it caused the liver cancer. The doctors treated the HepC and it is gone but not the cancer. He is on a liver transplant list.