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Cirrhosis and Resistant Hep C - New Symptoms are they serious?
I have cirrhosis due to 25 years of booze and drugs (clean 2 1/2 years) and Hep C 1a (?). Dont get to see my specialist much, maybe 2 times a year - I think they have put me in the too hard bin. Things have been developing for me and Im just riding them out as I have slowly developed a numb ambivalence to the whole thing which is weird but im being honest I guess. Things I am living with and making them a normal part of what my existence is now like are: crippling cramps in the inner thigh to the side and backs of the knees. They make it hard to sleep out of fear and sometimes I sleep for only 1 night in 3. Its normal for me to have 3 or 4 nights without sleep every week. I had psoriasis under control but its back and is in new places. A couple of the fingers on my right hand are numb and I cant rely on that hand to safely hold a cup of coffee. I smoke the occasional cigarette which slips out of my fingers as I cant feel the smoke to sense it has dropped. I'm forgetting things all the time and get stuck with basic logistics or numbers. Part of my job is managing a landscape and developing plantings etc Recently my balance has been off and Ive slipped down banks into streams. Ive has three minor car accidents in a year and have lost my no claims bonus with my insurance. Socialising is difficult because I have been isolated since giving up all substances over two years ago.
My brain is no longer serving up intelligent conversation because it doesn't seem to find the right words or topics to enter into,so outside of work I just talk to myself or my wonderful dog Holly. I suffer from depression which has now developed into a situation where al the things I had passion for have simply disappeared. Im not suicidal but Im bewcoming numb and accepting of the fact this is my life for the presumably short future in front of me. Are the symptoms I have mentioned above all pretty standard and I should just work them in as a part of what life is gonna be like from here on in? I need to keep my job for as long as possible to ensure my dogs last few years are amazing and that we have a house to sleep in and she gets the things she needs, If there are things I have mentioned above that may derail this, what ones are they and what I should I do. I need to stay alive long enough that I do my duty and sit with her when she passes and I cant die before my elderly mother who is pretty frail. I don't want her to be burying me and live her last days with sadness. If a couple of these things might jeopardise these plans I would like to try to get rid of them.
Can anyone shed any light or is this just what I need to accept and expect for the remainder? Thanks for reading the waffle.
You've put the title "Cirrhosis and Resistant Hep C"
Does that mean you've treated and relapsed? If so with what, and also what country do you live in?
Hep C impacts the brain and nervous system with fatigue, brain fog, neuropathies and depression being the most common things people notice - you are listing them all
Can you provide some more detail and ideally some blood test results
Hi Barry, I'm not a doctor, but I can tell you what worked wonders for me, I was sick as a dog thinking I was soon to die, and couldn't afford treatment. My iron was high and my blood was thick (and I had headaches, and numbness in extremities and cramping), I was developing diabetes, my liver and kidneys were coming apart, but this turned it around. Try this out and let us know if things improve for you.
1. Make sure your iron, ferritin serum levels are as low as you can safely handle. Ranges are 30-400ng/ml . I was at 1300ng/ml.
I was able to survive at 7ng/ml after blood letting every 2 weeks for 3 months. I wouldn't recommend going this low , but getting down to 25+ you should be able to survive okay. Time your blood lets to keep your iron low. High iron is linked to accelerated fibrosis, organ failure, cancer and viral growth, and thickened blood, so take it away. It's easy and it's free to fix, so if your iron is high, get your doctor to send you to the Red Cross ASAP.
2. Scratch 100% of sugar from your diet including fake sugars and lactose. You don't need carbs to be fit and well, you can run on ketones. Research "ketones" and ketosis and keto diets. Eat yourself healthy again. Basically eat a cup of green leafy stuff (cooked or raw) with each meal and then fill yourself up with low carb proteins, feel free to add Omega3 rich oils (research what they are, things like coconut oil, codliver oil and flaxseed oil). Get some MCT oil and take a little with your meals, it will help your brain fog and energy when you run on oils and ketones. Cut out the starches, potatoes, carrots, root veges, breads, grains, etc.
Start your day with a blended shake in the morning. Take a handful of raw leafy veges (look up best keto vegs) throw them in a blender. Add a few raw walnuts, 2 raw brazil nuts and 3 raw macadamia nuts and an avocado. Poach a couple of eggs or boil them or just toss em in raw. Add a teaspoon of coconut oil (its almost solid at room temp). Fill the blender with water and blend it up. Then eat a can of salmon with lemon juice on it. Optionally add some fish oil pills and flaxseed pills, and B group vitamins if you feel like it, they might help with thinning your blood. Stuff like this will help rebuild your gut flora.
For the rest of your meals do something similar, low carb, good proteins and fats.
Dont snack, dont cheat, dont go near a convenience store or fast food outlet, don't believe the standard food pyramid low fat guidelines.
As for sleeping, if you've got the cash, then get some 5HTP and Tryptophan capsules, 500mg-1000mg. Make sure you don't eat anything for 3 hours before you try to sleep, then just before you sleep(30 minutes) take the caps, it will produce serotonin and release growth hormone (which can help heal things) and knock you out all night. It will also lower sugar cravings and help you burn calories while you're asleep and awake.
This isn't a cure for cirrhosis or hep c, but it can make a huge difference in your quality of life. Within 3 days of blood letting and a few days of ketosis, I was up on my feet and active again. A week to a month and I felt totally alive again and I shed lbs of unhealthy weight without exercise.
Thank you for your advice. I have my next 6 monthly catch up with the nurse next month so I will share the results when I get them. To me they're hieroglyphics and I'm finding it increasingly harder to retain the info let alone remember what it all means! I definitely notice that I'm feeling less "intelligent" as time goes on if that's the right way to put it.
As for the diet you have detailed in your post, I don't have the monetary capacity to buy groceries every week and I have to just eat what I can to get something in my stomach. I do have access to leftovers and whatever is knocking around work on a daily basis which gives my body something to run on. I do however have a roof over my head and I'm warm at nights so I can't complain too much.
Again, your advice and guidance is really appreciated and helpful but unfortunately its about as likely as me being Batman for the foreseeable future.
I'm trying to be philosophical and accepting of the fact I began sowing the seeds of this situation nearly thirty years ago and now I'm harvesting the rotten fruit from that declining orchard.
I would however really like to have one more bite of the pie to see if I can kill this virus. If that is unsuccessful then at least I can say I did my best and had a couple of good attempts at it.
Thanks again for the reply, I appreciate the fact that you took the time to write all that to help me.
When I get the next hieroglyphic filled papyrus's from my appointment next month Ill have a go at getting them onto this space (haven't fully embraced the internet yet - old school!).
Hi Barry, sorry to hear about your health situation, and good for you trying everything you can to beat this virus . Please make sure to post your blood test results when you receive them next month. To be able to help, Dr James has asked you to answer a few questions in his post above as well. Best of luck to you.
Hi Dr James.
Sorry to respond this late but I dont use the internet much and I tend to miss things or not getting round to logging on for days. This is also my first experience of a forum which has been challenging and confusing!
To answer your questions, I had a 12 week course of Viekira (?), which was funded but it didnt kill the virus.I have suffered with depression and anxiety for about 30 years but with trial and error with different meds over the years I can now keep it manageable. However, by the end of the Viekira a different type of depression had built up hat I had never felt before, and the day of my last dose I was glad to see the back of the treatment as I was in a very dark place. Did the test 3months later and the Hep was still merrily waging war with my concrete liver unfazed.
The last funded drug that came out early this year, Maviret, but I didnt qualify for funded access to it. They have me now on a six monthly appointment whereas I was previously on a three. I can read between he lines on that and its not their fault, they simply cant do anything for me at present. Buying my own meds is just not an option for myself or my elderly mother or sister if I dared to ask them which I wouldn't.
I live in New Zealand sorry I didnt mention that. I will get someone to help me put the outcome of my appointment (end of Sept) along with the hieroglyphic numbers and letters from my blood test on here for you to decipher if you get a chance.
Thank you for your reply and apologies for my shockingly tardy reply Doctor James
The good news is that Professor Ed Gane in Auckland is about to launch a clinical trial that will take in all the NZ Viekira failures and retreat them with Maviret + Sofosbuvir.
With any luck you'll be cured by the time that next 6 monthly appointment rolls around.
I can confirm the email arrived and I have replied copying in Prof Gane so you'll get popped on the list of people to get fixed up, second time lucky.
Hi Barry666 and hello to the gorgeous Holly!
Thanks so much for sharing your story. Such good news that you are on the pathway to the right treatment for you. I know how debilitating Hep C is and how wonderful it is to live without it. I wish that for you.
I'm looking forward to hearing how you are going from time to time....
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
I remember the first treatment I was given (Viekera?), required me to alter one or two of my prescribed medications by lowering their dose or switching to an alternative drug. I had to prepare and slowly step down week by week to a lower dose. Is that something I should be preparing for now or will it be different if i am allowed to have the treatment proposed for my second try?
Also, regardless of whether I win or lose this time round will the course of treatment further damage my liver and other organs regardless?
If I am offered the treatment I will grab the opportunity with both hands and with grace, but what worries me is that since my detox and rehab over 2 years ago and being told I am cirrhotic and host the Hep C demon, I still feel like I have no idea whats happening inside me and just how serious my overall condition is. My questions to my specialists have thus gone from trying to understand this situation and become knowledgeable of where my health is, all the way to the frame of mind that I find myself in over two years later: a general acceptance that I have a bad liver and a bug which is trying to destroy it while its down. No one wants to tell me how fast I am declining (because surely without any targeted medication I cant be getting healthier day by day?)!
Hi Barry, to learn if the new treatment you will hopefully be getting (Mavyret + Sofosbuvir) will interact with your current medications or not, there is an excellent resource where you can check and know
www.hep-druginteractions.org/checker You have to check using the medications generic names, for example Mavyret is Glecaprevir/Pibrentasvir. If you need help, you can write a new post with the names of the meds you're taking and I'll check for you. If there is interaction, you will need advice from a doctor on how to handle the transition.
The modern Hep C medications (e.g. Mavyret and Sofosbuvir) are very safe and do not cause any damage to the liver or any other organs, they have been studied extensively in multiple very large clinical trials. On the contrary, they will stop and allow the body to start reversing the damage that has been done. Looking forward to hearing good news from you that you were admitted to the trial.
Hi Mar. If you have the time to check for me would be grateful. That way I know that someone with a bit more experience and knowledge can give me a better idea that I can start to think over and talk to my Doctor about to see what he says.
Although its not certain whether I will definitely get the treatment this is what is proposed - Mayvret and Sosfosbuvir. My daily meds are:
Enlafax (venlafaxine) 150mg
Concerta (methylphenidate) 54mg
I also have (when needed):
Thank you again for your help. I appreciate it more than you can know.
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