Need all the info and help I can get with this disease. New to having Hepatitis C

[Mysohazy]

I just found out I have Hepatitis C. I knew in my gut I had it. I have chronic pain daily and have for years. It seems to be worse. I need all the support I can get and have a lot of questions about this so bare with me. I am a mother of four kids and have a husband that is scared to even kiss me cause he is afraid of getting it. I just want to live a life with my kids and see my grandkids. So any advice to help me through this would be wonderful. Thank you

[lina61]

Mysohazy, Hi i am sorry no one answered your post.I understand how you must be feeling.I cannot tell you much about Hep C ,but i do know about Hep B as i have been infected for most of my life .I was told i was a carrier for it.I have had this for at least 40 years maybe more.Recently i was told it has become an active infection again.To minimize any damage to my liver i try and eat very healthy, no alcohol.Drink lots of pure water,and i do not take any medicines i don;t absolutely have to.I don;t use any chemicals in my home.No pesticides.I also used a liver tonic for many years, which helped me a lot.See if you can find a natural therapist to give you something which might help your liver.This won;t cure you of course, but may help support your liver and minimize some damage to it.I realize Hep C is worse than Hep B but i just basically wanted to show you that someone cares.I will pray for you to receive the help and treatment you need.I hope your husband will be supportive of you in your journey.You need that .God bless.Lina.

[jennyjolly]

Hi Mysohazy

I've been away this weekend or would have replied sooner

I've had hep c 35 years and am self treating

My ex and I were together seven years, till four years ago, before I was diagnosed

And he never contracted the virus

It's possible to transmit sexually but odds are low

Your husband needs to be correctly informed by researching online and in conversation with your consultant

The cure rate these days is high with the new meds eg Harvoni,Epiclusa,Vikiera etc

You also should be having the usual viral load test, liver function test,liver biopsy or ultra sound and fibroscan to clarify how your liver is functioning etc

Wish you every success in your full recovery/cure

Always pleased to hear from you

[TwinklingStar]

Hello Mysohazy

Welcome to the group. I am sorry you have been suffering so long in silence but am so glad that you have now been tested and discovered what is happening to your body and why you have been suffering both physically and mentally.

Firstly, I would like to tell you that I was infected in 1974 when I was 18 years old from a Blood Transfusion. Whatever way a person gets this terrible disease is not important as long as you have discontinued doing those things. Anyway, it was the governments fault that this virus was spread so quickly because they were warned by the World Health Organisation to not use this high risk blood. Many countries, including the UK, ignored those warning and they put money before lives and continued to use blood from high risk sources.

At the time of having the blood transfusion I was very ill and extremely fragile. Most people do not get symptoms for 10 or 20 years but in my case I developed symptoms within a week or two. I knew straight away that I had been given infected blood and pleaded with my Doctors to diagnose me with Non A, Non B Hepatitis (now called Hepatitis C). I am now 60 years old so despite having full blown symptoms every day for over 42 years I am still here!!

So this is important that I am still here and one has to ask how I have survived so long. Firstly I was very lucky that I had been studying all things medical at my local libraries. I wanted to become a Doctor. As soon as I developed the symptoms I knew what had happened to me. This enabled me to quickly make sure that I did all the right things to help myself survive as long as possible. So the following things are very important:

1. Do not consume any alcohol - not even one glass of wine EVER!

2. I am sure having four children that you are now no longer involved in any other activities that would be detrimental to your health.

3. Join this group on Facebook:

facebook.com/groups/3375067...

Here you can ask ANY and ALL questions and you will be among a massive group of extremely helpful people who also have Hep C. Some will have undergone treatment and obtained what is referred to as SVR (Sustained Virological Response). This means that the amount of infected cells left in their body is below a certain figure (could be 11 or 12 infected cells) or that the virus cannot be detected at all. You can ask people in the group to friend you and then you can talk to the person in the private messaging if you don't feel comfortable talking openly. Maybe make a FB name which is a deviation of your own real name......they don't allow Twinkling Star but they will allow a deviation of your real name.

4. Make sure you find out whether you have every been in contact with the Hepatitis B virus as this will become important when you consider which drugs to take for treatment.

5. Not EVERYONE wants to have treatment. This must be a decision that each individual person must decide for themselves. The new Anti Viral drugs have shown to have a couple of rather worrying side effects. One of those is that if you have every suffered with Hep B (which you may have but it may have cleared from your body within 6 months which means you would be classed as "Hep B Self Clearer") the new drugs can re-activate Hepatitis B. If you have not got the antibodies for Hepatitis B and you don't have any history of ever having it then this part will not be relevant to you. This problem was missed from being picked up during the trials because they excluded people who had any history of Hepatitis B from being included in the trials. Now there are a percentage of people who have been cured of their Hep C only to find that the Hepatitis B has been reactivated!

Also there are always things that are not known about newer drugs and so one must bare in mind that some things could have more risks than the risks that have been highlighted on the drugs warning leaflet. We can discuss these fears later on when you have more knowledge about your condition. Those affected seriously by previously by unknown side effects are usually quite a low percentage but not always. So it is always advisable to research things as much as you can.

6. There are very good drugs available and there are new drugs coming out all the time and many of these show over 90% "cure" rate. I put the word cure in quotation marks because we are never truly completely cured.......but certainly do not allow that to stop you from considering treatment.

7. While you are waiting to see the Consultant make sure you find out about changes you can make to your diet which would help prevent the virus from being quite so active. Foods high in sugar for instance will cause you to suffer more pain. The sugar kind of feeds the virus and makes everything even more inflamed.

8. Make sure that your husband and children NEVER accidentally use your toothbrush, shaver, tooth picks, or any other equipment that you may been infected with your blood.

9. I don't know how long you have been infected but you should make sure that your husband has a test and that both children are tested too. No need to tell the children what they are being tested for. If they should repeat it at school it could cause them problems from other children or even from staff. Unfortunately, there is still a great deal of stigma regarding Hepatitis.

10. Take your time to think carefully about who you want to speak to about it. Don't rush to tell people. You will soon have plenty of people online who you will be able to talk to.

11. I think it would be very helpful for you to join a local support group and your Hospital should be able to tell you where your local support group is.

12. Ring the British Liver Trust - contact numbers are: 0800 652 7330 or 01425 481 320. They are extremely helpful. They can send you some extremely informative leaflets to read which would help both you and your husband to understand about Hepatitis C. They will be able to tell you the best hospital to attend in your are which has a proper specialist Liver Centre. They should also be able to give you the number of the Hep C Help Organisation. The number I have is for Scotland so I do not have the one for England available right now.

They are open from 10:00 am to 3:00 pm Monday to Friday. If you do not have free calls ask them if they would be able to call you back.

13. Lastly I would like to try to give you some re-assurance. I was married with an active sex life for 16 years as we were told that it could not be passed on to partners. By the time I managed to get my OFFICIAL diagnosis my marriage was over. I contacted my ex-husband and both him and his new partner went for tests and they were both negative.

14. I have one daughter. I was definitely infected when she was born but she has not been infected as far as I know. (I am not sure whether she has REALLY been given the test so this is why I say as far as I know.) It is supposed to be only able to pass on the Hep C virus to others by direct blood to blood contact. Example: (1) You use your toothbrush and your gums bleed. Your husband uses the same toothbrush. (2) You use a razor to shave your legs and one tiny bleed. Your husband uses the same razor and also cuts and has a tiny bleed.

I think this is plenty enough information for you for now. Stay strong. Do not blame yourself.....almost every living person has done SOMETHING bad during their whole life! Remember you are no less important than someone who contracted the disease by NHS treatment! Try to stay positive but be realistic. If your husband doesn't feel able to kiss you right now then just hold hands. He must be feeling hurt and confused as well just like you. Once you get the leaflets try to encourage him to read the most helpful ones. If he refuses leave the ones you feel are most appropriate lying around in places where he may have time to read them.

Stay strong. Remember........I am still here.........42 years and counting. I have never had any treatment for Hepatitis C. I have a genetic condition and other health issues which has prevented me from having the treatments so far.

Love and Hugs to you.

I will keep twinkling for you.

love from Twinkling Star. Xxxx

[jennyjolly in reply to TwinklingStar]

For Twinkling Star

I'm sure you already know about claiming from Skipton Fund for Hep C from NHS transfusion

Thought i'd mention in case you didn't

[TwinklingStar in reply to jennyjolly]

Dear Jennyjolly

Yes I do know about it. Thank you so much for thinking of me though. I am a Stage 2 now. There are so many people who don't know about it. I think it is disgusting that Consultants don't automatically tell you. They should have made sure people who were infected by the NHS were informed of this.

Let's hope others will see your message and it will help someone. I lost years of support because of not knowing.

Keep Smiling. Stay Strong.

Kind Regards

Twinkling Star

[jennyjolly in reply to TwinklingStar]

Did I mention Healtone?

A sound frequency treatment downloaded on a loop

Play 3 times dat

Set of oiercing notes

Based on work of a Dr Royal Rife that won him a prestigious award

My friend in Ireland was cleared of cirrhosis

Only listened to that,no other treatment

Worth reading the science behind it on their site

Healtone.com

Keep Twinkling

Your posts are great

Caring/informative.very helpful

[jennyjolly in reply to jennyjolly]

Sorry spelling went bit awry

I also use it for hep c and has worked for me too

In that I feel so much better,VL gone right down

Been using 2 months now.

[TwinklingStar in reply to jennyjolly]

Dear JennyJolly

I must look into the HealTone. I am very interested in alternative treatments because I have been damaged so much by the NHS. Every time I have anything done or am prescribed anything I end up with more injuries or worse problems.

I will have a look at it soon.

Love from

Twinkling Star

[TwinklingStar in reply to jennyjolly]

Thank you for your lovely comments regarding my posts.

Take Care and remember to go for checks regularly in case the alternative treatments stop working for you.

With Love

from

Twinkling Star

[jennyjolly in reply to TwinklingStar]

Thanks TS

Have checkup every 3 months

Have you had treatment?

Been offered Viekiera/Riba

Don't want to take it

Got lot of flak of this site

Just from one member

As not going down meds route

If the odds were good re sides

I'd be very grateful for cure

But forums are very mixed

And no official info on percentage of people cured without post sides.

Feels like playing Russian Roulette

Love/best wishes to you too Xx

[jennyjolly in reply to TwinklingStar]

I have the Healtones for both Cirrhosis and Hep c already on a loop ready to listen to and already paid for

If you or anyone else would be ok trusting me with your E mail address

(which of course would be used only to forward Healtones to you)

I could send you the free Healtones with instructions how to listen for best effect.

[Storky8521 in reply to jennyjolly]

[e-mail]

[tillycindy]

Hello there Mysohazy. Firstly slow down and don,t panic all too easy to say I know, but you need to concentrate on the facts about Hep C. (As does your husband). At the moment you sound rattled which is quite understandable. Hep is passed through blood transfer ie transfusions such as after accidents or during childbirth (before screening came in) addicts sharing dirty needles that sort of thing, an exchange of bodily fluids. You are getting ahead of yourself worrying about things like telling the children bless you. Many people get treated and don,t tell a soul, it,s a personal choice. Arm yourself with the facts and besides feeling reassured, you can decide how to take it from there. Firstly you don,t say where you are from?. This makes a difference in treatment options. In the United Kingdom treatment is free. The old drugs such as interferon were quite hard on the system but thankfully the newer drugs are much better and many people sail through ( usually 12wk) course with few if any side effects. How were you diagnosed?. If at your doctors, that would be a good place to start regarding being referred to your local hospital and the hepatologist who can order new blood tests for you and get you on the road to treatment. The tests which may include an ultra.sound (easy and painless ) will show if you have any liver damage, you don,t say if you,ve experienced any issues to date. My advice would be, get yourself to the doctors. Look after yourself meanwhile, for example our livers do not like salt, or high fat . They (mine,s called Harriet..i decided if we had to live together we may as well be friends )Like to be kept well hydrated, seems to be 2 to 3 litres of water, or water flavoured with fresh lemons/limes daily , and fresh foods rather than processed (so you are in control especially over salt/sugar contents) fruits, use your common sense basically. Harriet swears that the more expensive the ingredients the better, but she would do wouldn,t she?. And what do you know, I,ve waffled so much I nearly forgot the blinking obvious. If you drink stop. At the moment the Hep is attacking your liver, as will alcohol. By not drinking you are shutting down one route of attack. You can start sorting the Hep on Monday. The Hep C trust has some great nurses, staff to talk to for further advice. Their helpline is staffed by volunteers who either have hep themselves or have gone through the treatment. We are always here for you. Stop worrying. (I know we all do/did, it,s human. Please keep in touch. Yours anne x.

[nadiaru]

Hi Mysohazy,

Sorry not to have been on here when you first posted. I am literally in week 8 of a 12 week treatment for Hep C. Apologies for long post so much to say!!!!

I was diagnosed in 1994 and have attended a Liver clinic at a hospital in London every 6-9months just to keep an eye on the virus and potential damage. In 1995 I was treated with a drug called Interferon together with Ribavirin to which I was a non responder and was taken off as the side effects were pretty awful and not working!!

Here we are in 2016 we have DAA drugs that are new and have very good results for many. The NHS are being charged phenomenal amounts by drugs Company. Treatment has till now been rationed although it may be getting better than it was!

I have bought generic version of Harvoni which seems to be working for me. I was too worried to carry on living with this beast! I am genotype 1b which is something you will find out about when you talk to a hepatologist. Many genotype are very responsive to the new drugs.

I went to a website called FixhepC. I was desperate to find out what was out there. They are brilliant the different people there from all over the world. If you go to it you will come across Dr Freeman who set this up along with other colleagues. They are absolutely genuine wonderful people who are totally on the level and wish to help as many people as possible to obtain treatment. They are always available to talk and you can read other peoples stories and journeys! There are many on the forum who have been through the whole story such as yours and are willing to share knowledge and experience. They even have the trust and blessing of the UK Hep C Trust, who now mention them on their website.

You have a vast world of knowledge relating to HepC out there now and along with what others have said on here you should be in a great position to do what is best for you and your family. It is scary when everything is new but you will gain confidence with knowledge and be able to take total control over it. Hope that does not sound patronising just how I was feeling myself!:-))

Leaving it and doing nothing was never an option for me it's a bloody incidious virus that can cause terrible damage over many years the knowledge is growing too and hopefully everyone can and must pull together and help one another to rid ourselves of something many are still oblivious to carrying

Please get back to me if you want any further info that I may have Like you I am a mother. My son is very disabled with cerebral palsy so I too want to be around for him as long as possible in this very crazy and often intolerant world we live in!!

Take good care of yourself and giving up any alchohol is one of the very best bits of advice. Much love

Nadia

[hazelnz in reply to nadiaru]

Like Nadia, I went through fixhepc website and bought generics or I would be on transplant list now. Even the NZ government guidelines now say to use fixhepc because it is run by a doctor, a great doctor, and there is clinical trial results endorsed by the International Liver Congress. I had genotype 3 for over 30 years, and cirrhosis, F4, for 18. I am now just on 24 weeks SVR, cured at last and it feels like life starting again. A scan a couple weeks ago showed I no longer have cirrhosis which I never thought possible- I am F2-3, still improving. The online process is easy and the support is so good. Comes in the mail and everything changes.

[PaulDavid]

I had hepc for 43 years before diagnosis,treated with interferon /ribavirin, 6 months and cleared 3 years ago.None of my partners contracted the virus! I would advise against a biopsy for the time being,request a fibroscan only as the biopsy is very unpleasant if you are ill with chronic hepc.All the best with your treatment!

[jennyjolly]

The Hep c friends on Facebook,a private site, is very helpful too

Do hope you and your husband are feeling more optimistic now

And focusing on your treatment/cure

[Coolninja807]

Hi im just coming across your post.i can understand how scary this feels to have hep c.its curable now;)i was infected and found out in 2015. I completed my treatment i was on Mavyret for 8 weeks.the virus is undetectable..God is wonderful!if you dont have private insurance, apply for medicaid,or does your city have a county health program for low income?see what you can find out..there are community health centers around that can help too.it will be ok..if you need someone to talk to..ill do my best ok!;)even though i been told the virus is gone i dont let my guard down i changed my razors,toothbrush,and i avoid drugs/alcohol God bless you!!it is spread through blood to blood contact