does interferon destroyed my soul?

[lookbehindyou]

Hi, I did take IFN alpha together with sovaldi for 12 weeks. That was 3 months ago. I cleared the virus. My ability to focus and for example play guitar is totally wrecked. I was so happy before treatment. Now I can't properly talk. I feel like I lost 50 points lent IQ.
I'm only 25 and I'm about to kill myself if my soul doesn't comes back. I don't want to live in this shell tx left behind... Sad

[Claire_MHModerator]

Hi, folks,

It appears we're covering and re-covering the same ground here, with a lot of off-topic posts in between, and little progress.  lookbehindyou, if you continue to feel depressed, please be sure to let your medical providers know.  You might also want to visit our Depression Forum here:
http://www.medhelp.org/forums/Depression/show/57
This discussion is now closed.


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                               ******** CLOSED DISCUSSION ********

                                        No more comments, please.
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[hrsepwrguy]

"It literally cooks the brain."

Are you talking about interferon ?

If so could you please post some peer reviewed research to back that claim

Have a great day

[dontworry_behappy1]

It's so interesting that a judge would give an order to commit you till next February.   Due to you feeling unstable while being treated with interferon.   There is much known by medical professionals about interferon but don't say much about it.  I think the main reason is the adverse effects.  It's a huge denial that anything is wrong.  Yes it does effect people differently.  Some for a shorter period of time than others.   You know we all want to know your story.  Can you tell us the events that lead up to you being committed?  I think we would have a much better understanding of your situation and be able to give you more specific direction and support. Don't think I don't understand how this could happen due to interferon making you crazed.  I personally know it can make you think you are.  Please tells what you started feeling and doing that lead to you being committed.  I think it will not only help you but can help others who are feeling crazy and not knowing why.

[Dee1956]

Congratulations for being UND

[lookbehindyou]

yes, i'm UND. Zero Virus. I think it's bad for every timeframe it's given.
It literally cooks the brain.

[Dee1956]

Everyone has given you great advice.  I have a question or two.

  Are you UND?  If so, what geno type were you?  What was the result of your liver biopsy?

I am asking because if you have relapsed that could explain part of why you are feeling so bad.

Interferon for 12 weeks is not bad compared to others who had to take it for 48 or 72 like Frank did.

You could do some searches on here to find others who are having problems after their tx and see what they did to help themselves.  
Have you been placed on anti-depressants?

At the top of the page, click on the magnifying glass, enter name of medication you took and you will find others.

Good luck, Dee

[hrsepwrguy]

Hi Jonas, I would like to point out that the time line of the ED (erectile dysfunction) that your having.

"Hi, I did take IFN alpha together with sovaldi for 12 weeks. That was 3 months ago."

"on top of that i'm impotent since 2 months. 100% impotent."

By my calc that would mean you were on interferon for 3 months and off of it a month to a month and a half before you started having problems, as frank pointed out above ED can be caused by many different things, might be worth your time to look into other causes of ED

Have a great day

[Frank J. Perrotta]

Pat, sorry I missed the comments given about Jonas claim of impotence.

This thread is so enormous (and a bit chaotic) I must have missed it.

tbh, I don't know about any of my input in this thread...

but thanks for the good cheer. All the best wishes to you and my fellow healers.

frank

[Frank J. Perrotta]

Jonas, your posts today were very disappointing!

Let me be the first to call out "bull". I think I asked very basic questions that anyone coming here for help would POST ON THEIR OWN FROM THE VERY START! and if they don't because - whatever reason... and if someone points out that this is important info for the forum to help then the poster gives that info IMMEDIATELY.

I am sorry if this comes off as harsh or strong but I am TIRED of repeating myself... maybe others are as well. It is obvious we are here to help you and it is obvious that you are ignoring our help.

Until I see some co-operation from you Jonas I cannot give of my very precious energy.

Your negativity and (yes, you are a) pessimist, with excellent English has some excellent brains here to really help you become the best you can be (I am one of those with very little brain power - boy you should see if some who connect with you are real genius!!!). If you have some issues that prevent you *are you bipolar yourself? or some other issues* from following, concentrating, staying positive, or whatever... PLEASE TELL US along with the other data I have asked for in the previous post.

There just seems to be something else going on and if I don't get an answer I can't help you.

frank

[MsDragonSlayer]

Dear one! You reflect so much of how I felt on triple therapy. Totally write all these disconnects down, one day when you can hear and taste and feel and smell and think you will rethink how you see the world.  You will never make jest at unbalanced humans, you will respect all that you are when you return back to a normal state, however you will forever be changed and you will have empathy for others that you've never had before.  So many of us here have been on your boat and the journey is insane!  Don't be afraid to tell your doctor In Detail all of the feelings you are experiencing!  He might have to stop treatment so talk with your doctor.  If you can't talk, type your feelings all out and print it out and hand it to him. Thank goodness my husband was there to talk to the DR for me as well and I also handed him what I typed out.  You are in the right place to let go and reach out for help, this is an amazing forum with lots of survivors.  Everyone is here for you ((((Hugz))))
LadyC~MsDragonSlayer

[patra_]

Good morning!  How did yesterday go?  Hope you slept well.  Dee's advice is good!  I have problems walking in the house, too, but it is better than not walking at all, and some days going out to walk is not possible.  I know when I get through with treatment I will be able to, so I do what I can, and move on - stressing about it would not do me any good.

Wishing you, and All, a sunshine, butterflies and rainbow day : -). !  

Temps dropped into the mid 60s last night - first time since Feb? Mar?  Quite refreshing!

[Dee1956]

Good Morning, just checking in. Not sure if this will help you but I live in a very small apt.
I have found that walking very fast for an hour every day has helped me mentally.  On the days that it rains I get on the phone, talk to a friend and walk a path through my apartment.  It is not the same as going outside but it helps quite a bit.

Also, you may not realize it but you are getting more responses than many others.  People have taken an interest, they want to help you.

Take Care, Dee

[patra_]

Hey, Frank!  What a great post.  Only thing I wanted to say, is that at least 2 of addressed the impotence, telling him it was temporary.  I guess that is not a guy's perspective, which must see the problem differently,  but it does go away.  I am glad you brought that out.  Coming from a man, that will carry more weight.

You bring a wonderful perspective to this because you have really been there.  I had no idea before joining this Forum that they were treating w/INF for souch long times!

Jonas:  Love the idea of the name change, and am glad to see that you are trying to work with the diet.

To both of you have a great day tomorrow, and keep on keeping on.  Hugs to both,  Pat

[Frank J. Perrotta]

Hi Jonas,

How are you today? The weather is really changing here in Pennsylvania! We had great nice weather... not too hot or cold but it is cold and raining now!!!



Many of us may be confused by your exactly history. I don't want you to feel uncomfortable but we can only help you if we know exact details of what is going on.

If you feel comfortable can you give us a bit of your medical issues before treatment and then the exact dates you treated. What other meds were you on when you treated?

Others have asked if you were within the hospital/lockup/house during treatment before/during treatment.

What medications are you currently being treated with? No one commented on your complaint of impotency which I found alarming! I became impotent when I first started anti-depressants but after some time it cleared up so it is important for us to know what other medications you are on now.

Again, I don't want you to feel uncomfortable but please know that we are not here to judge at all. I don't know what it is like in Germany but in the USA most Liver specialist will not even ask a patient how they think they got HepC. They are not interested! The docs treating HepC patients don't care if they were drug users, prostitutes, nurses, lawyers, etc.

We care even less here. We have had discussions with family members with brothers in prisons dying from HepC and helped them get treatment! We are very passionate about helping everyone no matter the situation. but we do need to know whatever is necessary to help the person who has reached out for help.

I am writing this, and maybe it is just me, but I feel a bit, um, not sure what the best word is... maybe frustrated...

for example: many have written about what kind of diet is best but you continue to ask about what kind of diet??? and this is just after I suggest that you re-read your very long post!

Of course, this makes me think that you have difficulty focussing! or some problems with memory... but you have already pointed that out... I am sure that you have a notebook feature on your computer so you have to start using it and copy paste the most important POSITIVE things such as diet tips!

This is another thing about your living situation I and maybe others don't understand. I can go to my GP and ask to speak with a dietician. They can set up a weekly diet for whatever situation I or they think is best. I think you must have the same thing available in the hospital near your house... but since you have not been 100% clear about the situation I am not sure...

"i have a question regarding THC. THC is sometimes used by people with MS (Autoimmune) and it does also help with post interferon symptoms. (i tested it) "
AGAIN, very FRUSTRATING! Where did this come from? Many have posted treatments that have been studied and worked LDN and now you come up with THC! With your own testing!!! btw, have you been diagnosed with PIS? or MS? I think I would stick with the plan to try to reduce inflammation within your system - which was the plan the other day. OK?


"my failure is that i orient myself on the worst case posts"

Excellent! Now what are you going to do about this? Again my suggestion would be to use a notebook app or just a paper notebook and write down some of the positive points of the writings in this and other threads!

OH, and maybe another GREAT idea would be to change your ID on here to looking to the future type name!!!

I do hope you take this posting very serious.
your friend, frank

[patra_]

I was going to say pretty much what Pooh said, except I would have said 'type in liver friendly diet' in the box and search from there. (i am not nealy as computer savvy as most folks on here : -) ).

Basically, the diet consists on all fresh fruits and veggies (cooking them is okay), but Reduce or leave out all together, the sugar and salt.  Good fats include yogurt, cottage cheese, cream cheese, avocado, nuts, there are others but I have to go look atthe lists from time to time myself).  Reduce or cut out red meat.  Try to eat chicken, turkey, wellcooked, and the same with fish - cold water fish are best.  There are grains, cereals to include andnot include, but since I don't eat much of that I can't remember which ones.  I do eat a lot of fresh, unsalted almonds.

Good luck, you have already seen a difference in the 2 or 3 times you have tried it.  That should tell you to keep on keeping on.  Go for it!  You will feel much better!   : -).  Pat

[pooh55811]

You are computer savvy. Just google 'healthy balanced diet' and see what comes up.

Here is a link to start you off:

http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/mediterranean-diet/art-20047801

People have been very understanding and patient and listened to you and given you excellent advice and suggestions. People have tried to help you and steer you in the right direction. But you cannot expect people on the forum to look everything up for you when you can do it yourself. Diet information, as well as a lot of other information, is at your fingertips. All you need to do is to do an internet search. You need to take the initiative and do some of the research yourself, focus on the positive, and make positive changes in your life.

[lookbehindyou]

my failure is that i orient myself on the worst case posts, i started my diet today. thing is, i don't know what to put in the diet. i ate about 4 apples today. made a huge difference. well,  and i ate fries. with tomato ketchup.
what would you suggest for the diet patra?

big hugs from this place!! !!

[patra_]

Good morning -- well,I guess it still is morning here, but probably not there.  I have no opinion on the marijuana issue - have never even used it to know.  But surely, 12 weeks on INF is not the same as what Frank did with the, I believe, 72 weeks.  

Don't  overlook the obvious and easy!!  Get your diet worked out with the person in charge of meals in your house!   Drink sufficient water!  Go for walks!  Think about other things than your problems -  as we have all said focusing on those just stresses you out and that is NOT helping you get past this post EOT problem.  Do the things that will help clear the meds from your system.

We would not keep stressing these things IF WE DID NOT KNOW THAT THEY WORK, and IF WE DIDN'T CARE ABOUT HOW YOU ARE DOING.

Enough lecture for today.

My husband goes on Facebook and You Tube every day and finds happy, cheerful, funny things and shows them to me.  You can do that yourself as I am sure your computer skills are far better than mine (well I can turn it off and on now without help Hehehe!)

Have a GOOD, POSITIVE, healing day!!  Hugs and smiles,  Pat

[hrsepwrguy]

"Hi, I did take IFN alpha together with sovaldi for 12 weeks. That was 3 months ago."


Opps the first line didn't copy and paste all the way

[hrsepwrguy]

Hi, I did take IFN alpha together with sovaldi for 12 weeks

ok ok ok ok, im in hospital since 5 months.

im locked up with mentally ill people until feb. 2015

Hi Jonas, I like can-do am a little confused about your treatment timeline, I am wondering why a doctor would start you on treatment then admit you to a hospital and never even think to pull you off of interferon.


@DWBH

About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Perhaps I should have recommended the social forum

http://www.medhelp.org/forums/Hepatitis-Social/show/76

[lookbehindyou]

i have a question regarding THC. I want to convince my GP of prescribing me medical marijuana. THC is sometimes used by people with MS (Autoimmune) and it does also help with post interferon symptoms. (i tested it)
I just don't know of how i can convince my GP that the symptoms i have are related to interferon cause no one will believe me! i mean, they prescribe Interferon for thousands of dollars, they will not admit that it causes these problems. So far...

[lookbehindyou]

im not directly in hospital. i live near a  hospital in a house for people who are ill.

[Frank J. Perrotta]

and why didn't you recovered from the Interferon? i mean, what are your symptoms nowadays?

... My worse symptom is chronic fatigue and insomnia. I do have some medication to help with most of my P.I.S. - I do take lorazepam daily also for anxiety... *answered a day or two ago... In addition I also have brain fog and some nerve pain but again most is controlled by medication.

Hi Jonas, I had a very busy day, sorry to get back to your questions so late.

I think you should take a deep look at your LONG thread and re-read it focusing on the POSITIVE messages! I keep seeing in your questions that you focus on many negatives while sometimes catching yourself and then focusing on positives! So that is great when you catch yourself. Dontworrybehappy is exactly right in his very last post!

btw, most importantly is the fact that you have finished very recently. 3 months for INF will need more time for it to clear your system! Please re-read what many have said about that also. About drinking a lot of water, eating lots of fruit and green vegetables!

Make the most of your situation. Being in a hospital situation... tell then you want a glass of water every half hour or whatever you decide. Tell them what you want to eat (like people have described as a best diet).

I am also trying to get on LDN which many are using to reduce inflammation! I am not sure if there is proof that INF has entered the brain barrier but we do know that HepC has entered the brain. Most recent studies have shown that ChronicFatigue and inflammation in the brain are connected. I don't know if LDN can cross the brain barrier but it does help to reduce other inflammation.

BUT AGAIN, Just ending treatment at 3+months is way too early to define yourself as having Post-Interferon Syndrome.

Not only can you take advantage of being in a hospital situation with having things scheduled for you as I wrote above but also being in Germany (just from what I have read about) is suppose to have an excellent medical system. Maybe I am wrong but even *some herbs are prescribed...

Again, you have to start taking advantage of the positives around you. Take advantage of the history we bring in postings instead of freaking out over every little negative!

You had HepC. You treated with a very strong combo drug. You cleared the HepC. Those meds are not going to clear from your body overnight! Those are the facts.You will have to be patient. Listen and do what many have suggested in your thread and be positive.

I know you will think it is easy for Frank to write that but so many freaked out just like you and so many calmed down and did exactly as many described in this thread to cleans their body of most of the gunk and carry on as best as they could.

Focus on the Positive, Best of Luck, frank

[hrsepwrguy]

Why did my post get deleted, is it not ok to recommend someone post treatment to the post treatment forum