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neurotoxicity following int/rib for hcv

i believe i may have sustained brain damage following treatment.   after 10 years i can assume this is permanent although i have mild CFS my concern is with  memory deterioration, headaches, mental fatigue, dizziness and a mild tremor in my jaw.
Although i have found information on neurotoxicity during treatment i have not been able to find out whether my condition is stable or if i should expect further deterioration of my cognitive abilities,  i am beginning to think the later.
is there any follow up studies on permanent brain damage following treatment?  obviously there are hundreds of posts online describing similar cases.
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Avatar universal
interestingly i read an excellent site by dr. charles lapp   on www.immunesupport.com/library/showarticle.cfm/id/2926   he is v clever and covers all aspects of CFS.   i am assuming that the damage from the treatment stops after treatment but triggers the cytokine cascade and inflammation of CFS (see dr. charles raisons study online)...
there is no cure for CFS but ongoing inflammation can be managed to a point.   i am currently so exacerbated by living a 1/2 life and there are days i need to be able to actually be productive so i am taking anti-inflammatories which seem v effective after all my clean living for 10 years and also i am taking sudafed (60mg psuedoephedrine, hydrochloride)  this is a sinus drug and also abused by truckers for long term hauls,   see  wikipedia description.    dr. lipp suggest ritalin,  which boosts dopamine in children and is considered safe.
i have given up on doctors for the time being but will try and get some ritalin because basically the psuedoephedrine is the only thing so far that has been effective.   but i will take herbs to cleans my liver,  maybe dandelion root...   i have to look into it further.
i am not saying anyone should try this but i am suggesting periodic use when you need to get out of bed and be productive at least is something that could be tried.
i have tried small doses of paracetamol 200mg with aspirin 300mg   twice a day which works for me and have read that ibuprofen on low dose over a long period of time helps with the inflammation that causes alzheimers,   so i figure it would be a help with brain inflammation...
after seeing 'sicko' by michael moore,   the health care system in the US is obviously totally corrupt  but the NHS system in the UK may be free but it's so dysfunctional you would never be able to find the help you need....

good luck
Helpful - 0
510626 tn?1219505569
Hi again.
Did over 48 weeks myself. Can't turn that around but wish I didn't do that!
Bad bad reactions all the way but to my defense..I lost my abilities to function mentally so could not help myself... and the hep doc was not out to help me or others in his care. Another story here.

I had to actually demand deeper testing for the thyroid.
My suspicion that something was wrong even with the tests coming back normal was substantiated by studies, documents, I found on the computer, so printed them out and made the doc read them.
This is what I end up doing to get the proper tests and care needed for the most part.
I went through a few docs to find ones that were open enough to at least listen.

I wouldn't go and get meds for yourself online. Just my opinion.
You don't know if you have thyroid problems or  which type..hyper or hypo..or both.
I bounce both ways.
Try to get better tests for the thyroid...and for other endocrine systems..pituitary, etc.

An svr is sustained viral response...remission. Some call it cured. Big debates on that one. But if you have been clear since you did the treatment 10 years ago, I'd say that the virus is gone.
However, some studies have found that the virus is a 'smart' one and have found them upon biopsies in those in remission. The organs, liver..that's why a few will continue to have liver damage progression, according to the studies, which I will try to find in my computer files and post so that no one is thinking I am fabricating this, or that ...must be her memory problems.

I also got fibromyalgia, cfs, gut problems..which is probably mostly due to the ribavirin, memory problems especially short term, vision is worse off, panic attacks,
teeth problems, headaches like I got on the treatment, mild stroke like 'things' that upon testing and ct's and mri's show no strokes and brain looks normal, intermittent ataxia..loss of muscle control, heart problems, chemical, drug...which keeps me from taking most pharmy drugs that may help... and food sensitivities, muscles all tightened up, ..well..the list goes on.

You mentioned Alzheimers..someone I know, their spouse, who went through treatment and dealt severely with memory loss was put on a drug for that and improved greatly.
It's not a standard thing to do but a friend is a nurse and suggested it.

There are some safe herbals and supplements that I take which helps with many of the problems going on. The ones for the gut problems, fibro and cfs has helped tremendously.
There has been some improvements with brain functions but like you, still have the motivation issues which may be due to depression. I don't know. Docs don't know but guess that the treatment is the culprit since 3 have known me for decades...gp's....and I was a go getter, multi-tasker, did a lot of outdoor physical pleasures, lots of art work.... Something..the struggle with motivation...  came along with the treatment, and I did take anti-depressants as instructed while on treatment and after until the body was reacting terribly to that and any type the docs tried with me.

Now..the head doc is thinking I should get into cognitive therapy.
And, yes, there have been regular tests for liver function, ammonia levels, encephalopathy, etc...just in case...and so far those are all normal.

Marci...I know you asked samueljones...but I had to go for the ssdi.
I have a friend with RA and other autoimmune problems in another state who works for the school system and has been trying to get on long term disability with the insurance company and so far they say no.
She almost died once and it is pure will and meds that keeps her going, working part time now.
From what I know...get all the the docs diagnosis and letters from them, lab and doc reports. Psyche docs as well.
As my friend told me though, psychological disorders is not valid with some disability work insurance programs.
She also said that her insurance will cut off long term disability after a certain amount of time and will have to apply for ssdi eventually if no improvement or worsening happens.
I am happy for the ones that the treatment helped and am not anti or pro treatment.
It's a very individual decision and there are individual outcomes.
Best to you all.
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Avatar universal
ps Marci,   is that a trick question?  part of the condition is a inability to complete a task,  over 10 years i can honestly say that organizing paperwork, filing, forms of any kind or any office task is almost impossible for me to even contemplate.   i read a study which states that the treatment can affect that part of your brain where you are lacking motivation to take on a task,   after reading that i realised that it was true,  i could probably do the task if i could just make myself start...   but i can't...

Maybe you need to get all the studies together and just plod thru it,   get someone without this condition to help you...   i am at the stage where it takes me a month to get a new passport.
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Avatar universal
i'm new here too...   but since posting i have remembered a study i found by dr. c raison proving there is a link between INT/RIB treatment for HCV leading to CFS.   It triggers the cytokine cascade found in CFS ...   every time i have a bloodtest it showed inflammation,  so basically i am looking into anti inflammatorys...   I have asked my doctor to send me to a neurologist but they say no it's unecessary,   the NHS system is going to kill me...  the last time a saw a doctor she asked me to have a hep b and C test and do the alzheimers test...   which obviously is no help apart from making me want to strangle the doctor...
what is svr?   my treatment was 10 years ago,   big doses and 48 weeks...

my condition is susceptible to other viruses so if i catch something it has a devastating effect...   thyroid seems normal but from what i have read the tests can come back normal but you can still have a thyroid problem  so i'll get some thyroxine online...
take care

Helpful - 0
507037 tn?1210765804
Sam, I know just how you feel. That's exactly what I've been trying to find out. I feel like I'm going crazy and I'm the only one. I would like to know and find out what I need to do. My job was working in Administration at a Hospital. I had to take short term disability and now I need to file for Long Term. Have you tried to file for anything?

Keep in touch,

Helpful - 0
510626 tn?1219505569
I have heard from many people who have done the treatments for hcv to have lasting issues.
Me, being one.
If you read the the newer blackbox warnings, there is the statement that it can cause autoimmune diseases, etc.
Some people will argue forever that treatment causes no permanent side affects but many know this is not true.
Your concerns about continuing degeneration is valid. I wonder too.

Did you get an svr? It seems that..just my own observations...if one doesn't than the hcv can make one more symptomatic..or if not symptomatic prior to treatment...become symptomatic.
The virus can become very active.

If you haven't start here...go see a neurologist and endocrine doc.
How's the thyroid?

I have been searching for any studies of recent, in particular, but have not come across anything deep. There are some sites but it's 'pay for view' and one of the sides from treatment for me is not being able to work anymore.
Maybe someone else has some studies info that is independent from pharmas, etc. and that goes deeper than the ones I have found so far.

And a "Hello" to all...I am new here.

Helpful - 0
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