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Thip

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Jul 29, 2016, 5:02:22 PM7/29/16
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How goes it?

SF

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Aug 1, 2016, 10:27:33 AM8/1/16
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"Thip" schreef in bericht news:nngg8t$7n4$1...@dont-email.me...

How goes it?
--------------------------------------
I took my last pill last thursday. I got the control visit to the doctor
(which is just a short conversation 'how are you doing, see you in 3 months"
and a new blood test). He told me the values of the last blood test were all
good. I won't get a fibro scan untill at least oktober and we'll have an end
appointment after that somewhere in a years time. He thinks I'm cured. I
hope so. I felt awefull at the end of the course of harvoni. I hadn't slept
well in all that time and I got confused and lots of memory problems. I
expected to feel immediately better when I stopped taking pills, but it took
a few days. I started to drink herbal tea when I was at the end of the
treatment and that did make a change in how I felt :)
So I just hope I will be sleeping better soon and feel a lot better then.
Thanks for asking. Are you still doing ok? You still had trouble with the
liver and more if I remember correctly?

SF


Thip

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Aug 1, 2016, 10:48:06 AM8/1/16
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"SF" <S...@example.nl> wrote in message
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I got rid of the liver problems (I think). My ammonia was very high so I
had to take Xifaxin and Laculose, which made me sick as a dog. I quit
taking them and told my doctor I didn't care of I died, but my levels came
down and stayed down--this after he told me I'd probably need them for the
rest of my life. So there! Meanwhile, my thyroid quit and I got that under
control, and now I have fibromyalgia. It takes me a couple hours every
morning to get my joints oiled well enough to move around. I'm the Tin
Lady--where's my oil can?

I have a checkup this month, which will be just past the one-year mark. I
told him I want every blood test in the book, but I also plan to ask him for
something to check the status of my liver. I think the last one was in 2005
and it wasn't pretty, so it would be nice to know if I've improved or not.

Someone told me it takes 11 days for Harvoni to completely clear your
system. You may have problems off and on for the next year or so, but I
hope you're one of the lucky ones who sails right on through. Try tart
cherry juice to help you sleep. You only need a few ounces at bedtime; it
releases the melatonin in your body. I always keep it handy.

SF

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Aug 5, 2016, 5:05:29 PM8/5/16
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"Thip" schreef in bericht news:nnnnf5$429$1...@dont-email.me...

> SF
>

I got rid of the liver problems (I think). My ammonia was very high so I
had to take Xifaxin and Laculose, which made me sick as a dog. I quit
taking them and told my doctor I didn't care of I died, but my levels came
down and stayed down--this after he told me I'd probably need them for the
rest of my life. So there! Meanwhile, my thyroid quit and I got that under
control, and now I have fibromyalgia. It takes me a couple hours every
morning to get my joints oiled well enough to move around. I'm the Tin
Lady--where's my oil can?

I have a checkup this month, which will be just past the one-year mark. I
told him I want every blood test in the book, but I also plan to ask him for
something to check the status of my liver. I think the last one was in 2005
and it wasn't pretty, so it would be nice to know if I've improved or not.

Someone told me it takes 11 days for Harvoni to completely clear your
system. You may have problems off and on for the next year or so, but I
hope you're one of the lucky ones who sails right on through. Try tart
cherry juice to help you sleep. You only need a few ounces at bedtime; it
releases the melatonin in your body. I always keep it handy.

---------------------------------------------------
Ah thanks for the tip I'll try that. Did you try ginger and koenjit for your
joints? I'm especially having trouble with my hands, osteoartritis and I got
2 triggerfingers. Only one injection helped a bit.
Today I went swimming and the rest of the day I was too tired to do
anything. My liver was never that bad (my scan had a value of around 9 which
apparently was a borderline case for the amount of treatment I needed) so I
don't understand why I'm not feeling better. Really bad news that you have
fibro :(
SF

Thip

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Aug 6, 2016, 6:46:57 PM8/6/16
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"SF" <S...@example.nl> wrote in message
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Fibro's partly in the muscles and partly in the joints--at least, mine is.
I shouldn't drug myself, but I've found 2 Tylenol PM at bedtime do the
trick. My back KILLS me, but at least I can get out of bed in the morning.
It also seems to calm the neuropathy in my feet a little. I should probably
pay a visit to my friendly osteopath and have my back x-rayed--another thing
on the list, I suppose. Getting old sure ain't for sissies, not when your
body's been beat to pieces by hep c for over 40 years.



SF

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Aug 8, 2016, 2:58:21 PM8/8/16
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"Thip" schreef in bericht news:no5pd0$8fm$1...@dont-email.me...


Fibro's partly in the muscles and partly in the joints--at least, mine is.
I shouldn't drug myself, but I've found 2 Tylenol PM at bedtime do the
trick. My back KILLS me, but at least I can get out of bed in the morning.
It also seems to calm the neuropathy in my feet a little. I should probably
pay a visit to my friendly osteopath and have my back x-rayed--another thing
on the list, I suppose. Getting old sure ain't for sissies, not when your
body's been beat to pieces by hep c for over 40 years.


---------------------------------------

2 people in my guild (world of warcraft) have fibro and they both take very
heavy (opiatelike) medication. But one can forsee that one day that won't
work anymore and then what? It would be nice if docters start making some
cure!
I've been on a trip last week and I am completely bushed still after a few
days. Not what I was hoping for. I haven't been able to buy tart cherryjuice
since I have to go to a special shop for that so I just bought some cherries
instead haha. Going to be my snack for tonight, who knows it also has a good
influence and else its healthy anyway. I know it's not what you hoped for
either to be suffering at old age, but your still alive and perhaps one day
scientists (or someone else) will find methods to make life easier. Don't
lose hope yet.

SF

Thip

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Aug 8, 2016, 7:13:25 PM8/8/16
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"SF" <S...@example.nl> wrote in message
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I'm not going to take opiates, no way. I'll crawl across the floor first.
I tried taking Cymbalta, which worked, but the trade-off was not sleeping.
I've switched to Lyrica BUT can't take it twice a day like I'm supposed to
since it literally gives me migraines. Since I seldom get headaches, I'm a
terrible whiny baby about it. I do take one Lyrica before I go to bed since
it smooths out my sleep pattern and makes it much more normal. People with
fibro don't go into deep sleep. I didn't realize I'd stopped drifting off;
it was either awake or asleep, no inbetween. I also have muscle spasms as
I'm drifting off too--another thing that was missing. But opiates? No no
no. The last thing I need at this late date is an addiction.

You can probably get the juice off Amazon. Silly me, I assume everybody has
a Walmart. Sorry!

SF

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Aug 9, 2016, 5:41:14 AM8/9/16
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"Thip" schreef in bericht news:nob3mk$3qf$1...@dont-email.me...
-----------------------------------------
I do take one Lyrica before I go to bed since
it smooths out my sleep pattern and makes it much more normal. People with
fibro don't go into deep sleep. I didn't realize I'd stopped drifting off;
it was either awake or asleep, no inbetween. I also have muscle spasms as
I'm drifting off too--another thing that was missing.

---------------------------------------------------
I haven't been sleeping well yet even though I'm off harvoni now for 2
weeks. waking up too often but I still hope everything will go back to
normal eventually
The thing about muscle spasms leads me to link this article
http://web.mit.edu/london/www/magnesium.html
You might have help with good quality magnesium tablets it won't hurt to try
a tablet a day before sleep.
Also I presume you already take vit D3? I just started yesterday again
because I forgot all about it....

SF


Thip

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Aug 9, 2016, 9:20:03 AM8/9/16
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"SF" <S...@example.nl> wrote in message
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I do take D3. It goes along with my thyroid problems. At last check my
levels were normal.

The muscles spasms I was referring to are the one we normally get when
falling asleep. Everything from your arm jerking from your body practically
lifting off the bed. Along with not drifting off to sleep in a normal
fashion, I no longer had the spasms. I don't have them nightly--most people
don't--but they're an indication that all is well, actually.

I don't remember if you said you've ever done the interferon/riba tx. If
so, be on the lookout for fibromyalgia, thyroid problems, neuropathy, and
even rheumatoid arthritis. Oddly enough, they often seem to stay dormant
until triggered somehow by Harvoni. Gilead and physicians aren't talking
about it, but the patients sure are. Many people sail on through Harvoni tx
and eventually return to normal, but there are enough people like me that,
sooner or later, it's going to come to light.

SF

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Aug 9, 2016, 10:34:41 AM8/9/16
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>

I do take D3. It goes along with my thyroid problems. At last check my
levels were normal.

The muscles spasms I was referring to are the one we normally get when
falling asleep. Everything from your arm jerking from your body practically
lifting off the bed. Along with not drifting off to sleep in a normal
fashion, I no longer had the spasms. I don't have them nightly--most people
don't--but they're an indication that all is well, actually.
--------------------------
for me that is abnormal, I had restless legs for a while but that
disappeared after taking magnesium
-------------------------------------------

I don't remember if you said you've ever done the interferon/riba tx. If
so, be on the lookout for fibromyalgia, thyroid problems, neuropathy, and
even rheumatoid arthritis.
---------------------------------------------------------
I had only interferon, I declined the riba when it was offered very long ago
-------------------------------------------------------------------
Oddly enough, they often seem to stay dormant
until triggered somehow by Harvoni. Gilead and physicians aren't talking
about it, but the patients sure are. Many people sail on through Harvoni tx
and eventually return to normal, but there are enough people like me that,
sooner or later, it's going to come to light.
-------------------------------------------
My doctor said - harvoni has no side effects. After the second time I
complained about the not being able to sleep he admitted that side effect.
He probably thinks 'if I don't say it's there it won't happen'. He doesn't
know me - if there is a side effect I'll probably get it lol.
I'm having joint aches and problems with my fingers from before Harvoni so
can't blame it on that but I did blame it on hep-c even though it doesn't
seem related. The doctor say most people complain about their knees. For me
it's practicly every joint that hurts. I just try to keep active. I had
migraines for years. It went better after I got older (different hormones).
But I still have to take care to drink enough and not overdo exercise or it
comes back. Noone ever talked about fibro or anything else with me. There
seems to be some arthrose in my hands but not where the problems are so
can't be related imo. I had those problems with my teeth (several rootcanals
and finally just removed the damn thing and then the one besides it started
acting up and another rootcanal did not really help). So my thought was pain
in hands and pain in teeth somehow connected. The doctors thought that was a
ridiculous idea.
At this particular moment I feel like I'm seasick. The ground seems to be
moving. I shouldn't have taken that flight for short trip. it was overdoing
it

SF
ps in case your wondering why I'm not using proper usenet makeup - I once
posted private email in newsgroup in thunderbird so I returned to crappy
windows live mail that has one good thing - it will not accidentely post to
usenet unless I choose to

Thip

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Aug 10, 2016, 2:20:32 PM8/10/16
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"SF" <S...@example.nl> wrote in message
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I use WLM all the time. Whatever gets the job done, right? I hate it when
users look down their collective noses and say, "Oh, you use THAT?" I use
what's comfortable for me.

Anywho, it's the doggone interferon that causes all the damage, not the
riba. That's on top of the damage caused by the hep c, of course. It's all
very hush-hush where the doctors are concerned, but if you do a little
Googling (OMG! Don't use Google! Use StartPage or DuckDuckGo if you want to
be cool) you will find tons of academic papers on the subject. I read a few
of those and then went to less academic publications. There was enough
verification to satisfy my hunch that inf had done some serious damage.
And, I think, in time we'll find that Harvoni triggers what the inf started,
but I'll bet you the doctors won't talk about that, either. All I know is
that I was relatively healthy when I had hep c, and now I don't have it and
I am literally a physical wreck. It's bad enough that I wish I hadn't done
the Harvoni, and I plan to tell Big Chief Liver Doc just that tomorrow. I'm
sure I'll just get That Look from him, but I'm past caring.

Harvoni DOES have side effects! I had a killer headache for the last 2
weeks of my 24. I also got nauseated and dizzy occasionally.

Your dizziness sounds like inner ear, unless it's residual Harvoni. Please
be careful.

SF

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Aug 11, 2016, 11:53:52 AM8/11/16
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I use WLM all the time. Whatever gets the job done, right? I hate it when
users look down their collective noses and say, "Oh, you use THAT?" I use
what's comfortable for me.

Anywho, it's the doggone interferon that causes all the damage, not the
riba. That's on top of the damage caused by the hep c, of course. It's all
very hush-hush where the doctors are concerned, but if you do a little
Googling (OMG! Don't use Google! Use StartPage or DuckDuckGo if you want to
be cool) you will find tons of academic papers on the subject. I read a few
of those and then went to less academic publications. There was enough
verification to satisfy my hunch that inf had done some serious damage.
And, I think, in time we'll find that Harvoni triggers what the inf started,
but I'll bet you the doctors won't talk about that, either. All I know is
that I was relatively healthy when I had hep c, and now I don't have it and
I am literally a physical wreck. It's bad enough that I wish I hadn't done
the Harvoni, and I plan to tell Big Chief Liver Doc just that tomorrow. I'm
sure I'll just get That Look from him, but I'm past caring.

Harvoni DOES have side effects! I had a killer headache for the last 2
weeks of my 24. I also got nauseated and dizzy occasionally.

Your dizziness sounds like inner ear, unless it's residual Harvoni. Please
be careful.

------------------------------------
can't wait what your doc will respond Thip :)
Mine is like a living advertisement for the stuff. I was most afraid for the
residue of eyesight I still have. I did read about the headaches before I
started on Harvoni but I figured that I got used to having headaches. But
I've got a headache now for a week and also still dizzy, so at he moment I'm
not happy. I'll just try to take it easy for a bit. All those plans for when
I was supposed to be 'better' back in the fridge. At least I still have
income from that disability allowance, if I'd live in the US I'd be in deep
shit.

yours SF

Thip

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Aug 15, 2016, 4:14:09 PM8/15/16
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"SF" <S...@example.nl> wrote in message
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Didn't make it to see BCLD. My back hurt so badly I couldn't walk. He
called me and proceeded to attempt to fuss at me. "You know you have
lesions all over your liver and you need to see a doctor!" Why? Why not
just call in another MRI and save me the drive? I told him what I thought
of his MA, Corrie, because of all the many times I called that office, I
never once got past her (guess she was just doing her job). I had questions
that went unanswered because I'd ask Corrie, she'd ask Dr. West, Corrie
would call me back two days later, and I have a follow-up question and just
didn't bother. He said he'd have Corrie call me to make another
appointment, but she hasn't yet, so oh well.

Meanwhile, in Bad Back Land, I have antibiotics, anti-inflammitories, and a
muscle relaxer. We'll see how the week goes.

SF

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Aug 17, 2016, 8:17:32 AM8/17/16
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Didn't make it to see BCLD. My back hurt so badly I couldn't walk. He
called me and proceeded to attempt to fuss at me. "You know you have
lesions all over your liver and you need to see a doctor!" Why? Why not
just call in another MRI and save me the drive? I told him what I thought
of his MA, Corrie, because of all the many times I called that office, I
never once got past her (guess she was just doing her job). I had questions
that went unanswered because I'd ask Corrie, she'd ask Dr. West, Corrie
would call me back two days later, and I have a follow-up question and just
didn't bother. He said he'd have Corrie call me to make another
appointment, but she hasn't yet, so oh well.

Meanwhile, in Bad Back Land, I have antibiotics, anti-inflammitories, and a
muscle relaxer. We'll see how the week goes.

_---------------------------
that sucks, I always hated assistants of doctors that think they know better
than the patient and also I don't really want to discuss with a nurse, I
want to talk to a real doctor.
Bad news about your back getting worse, I think you should go to a special
back-clinic if those exist where you are. They migh know more about it or
have some other thing to help you other then pills. Anyway whats the use of
talking to a doctor about your lesions, are they going to rectify that? Do
they have those wonderdrugs?
I feel better since 2 days thanks to eating freshly cooked artisjok again.
It seems the only thing that does anything for me, but I seldom eat it. It's
pretty expensive, takes quite a while to prepare (and eat) and isn't a full
meal on it's own. But at least I got something done of my ever increasing
list of todos :)

SF





Thip

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Aug 17, 2016, 9:44:59 AM8/17/16
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"SF" <S...@example.nl> wrote in message
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> "Thip" schreef in bericht news:not7qg$eul$1...@dont-email.me...
>
<snip>
> Bad news about your back getting worse, I think you should go to a special
> back-clinic if those exist where you are. They migh know more about it or
> have some other thing to help you other then pills. Anyway whats the use
> of talking to a doctor about your lesions, are they going to rectify that?
> Do they have those wonderdrugs?
> I feel better since 2 days thanks to eating freshly cooked artisjok again.
> It seems the only thing that does anything for me, but I seldom eat it.
> It's pretty expensive, takes quite a while to prepare (and eat) and isn't
> a full meal on it's own. But at least I got something done of my ever
> increasing list of todos :)
>
> SF
>

We do have clinics but the closest one is about 35 miles away, and right now
I'm not up to driving that far. I'm going to take this stuff for a week and
see if it's any better. Today I can walk upright, and that's a vast
improvement. Corrie still hasn't called me, so I'm not sure if Dr. West
decided to quit me after all, or if she decided I need to call them. I
guess I can find another gastro. I just need to find one to order MRI's and
blood tests periodically. There must be some unwritten rule about showing
up in the doctor's office X number of times per year and I violated that
rule. My bad. If Corrie had let me through to Dr. West instead of barring
the gates, I might have been able to resolve the problems I've had more
quickly, but she left me stumbling in the dark trying to find answers.

I had a major love affair with asparagus after I was done with Harvoni.
Don't get me wrong, I do like asparagus, but I did everything but eat it
raw. It's not as expensive as artichokes, but it is costly. I bought huge
bunches of it and froze it in portions. I know it should be lovingly
prepared, but I just popped it in the microwave with some butter and season
salt and called it good. The need to eat it almost constantly left as
suddenly as it started. I bet you'll wake up one fine morning and find the
same thing happened to you.

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