This is new - Harvoni and my voice

[folsom]

I am a bit over a month past my (successful) Harvoni treatment. There were a LOT of side effects that I've discussed in previous posts but just discovered a new one that I would not have dreamed was related to Harvoni.

During the Harvoni Summer (May-Aug 2016) I gradually lost my ability to sing outside my normal speaking register. Since I am not a professional singer this was sad for me but not devastating and as I was completely preoccupied with dealing with the other side effects I set it aside to deal with more pressing, life-effecting matters/side effects.

Yesterday I was in the car and naturally began to sing with the music on the radio. High notes, low notes, the whole enchilada.
I cannot say how joyful I was - singing, even if only for me, is a simple pleasure that I was sad to have taken from me.

I know the doubters will say there is no way to attribute it to Harvoni and they are right - there is no proof. I can posit a possible reason why but its all conjecture.
The main thing is I know that it is Harvoni that caused this and the subsequent lack of it that brought my voice back and I'm grateful.
I only post this for anyone else that this might help.
Did I say I was grateful? Can't say it enough.....

[dragonslayer]

>>The main thing is I know that it is Harvoni that caused this <<

Folsom, with all due respect, there is no way you can KNOW this.  You can think it if you like.. You can feel it.. but you cant KNOW it.  Simply because two events occur in some temporal relationship with one another does not prove one is a causal agent of the other.   This is the old correlation vs causation logical fallacy that so many people seem to fall into.

Example... Had a recent colonoscopy after treatment...   A small non cancerous polyp was discovered and resected.   Did Harvoni cause it?  Another:  My nascent cataracts have gotten worse since I started and completed treatment... Was Harvoni the cause?

I say emphatically no...  Cataracts get worse as we get older, and polyps also tend to increase with age.    Losing range in your singing voice?    Thats going to be a tough one to 'know'.    Could have had a slight cold,  or sleep patterns may have changed, etc, etc..   Im not saying its impossible that Havoni effected those dulcet tones; only that its impossible to KNOW!

[Baxter]

Interesting. Over the last several years, I noticed that my speaking voice changed significantly. It became somewhat weaker, more tired, more strained, less range... within 2 days of beginning Harvoni, I had my voice back. It was once again strong, vibrant, more range and more depth... it actually scared the cats because they weren't used to my voice booming like that. I used ti be on the radio, many years ago, and this is the first time in many years I've had my "radio voice" back. Been that way ever since the 2nd day of treatment, over 6 months now. I attribute it to being less fatigued, and having more energy in general.

Obviously not at all the same thing you experience, but nevertheless an interesting coincidence. Or at least I think so, anyway.

[folsom]

I think its amusing that when someone says 'with all due respect' what they mean is 'I'm about to tell you that you're wrong'.

I do know it. You may think whatever you please but I know it. Just like you know I'm wrong.
See how that works?

[dragonslayer]

Folosm.. Relax, and think logically.. First, I did not say you were wrong..  If you read what I wrote, I  allowed that perhaps, Harvoni did take away that beautiful voice.  What Im saying is I cant KNOW that it didnt, any more than you could KNOW that it did!  Think logically..    If you do know Harvoni took away the upper register of your voice, please tell us how you know this.. I would like to learn how one gets knowledge about such a thing.

[Luna7]

When trying to determine truth it's best to mix logic with intuition -- a kind of perfect balance. Since so much of knowledge is out of our conscious awareness we would limit truthfinding if we rely only on logic. So many experiences we've had in the past, awarenesses that are perhaps only partially conscious....all of those are stored outside of our conscious mind.

It's like when I create nature art...if I tried to do that with my conscious mind it would turn out pretty bad. I mean, I could get out a color chart and measure the correct balancing of colors that create harmony, or deliberately try to place objects in a scene so as to approximate the golden mean (an arrangement in space that people naturally find appealing)...but much better just to let my subconscious do the work...the result is always sooo much better and utilizes knowledge my conscious mind didn't have.

I fully believe we can know things in our guts, in our bones...not saying we can always achieve that, but it is a skill that can be developed. Logic can be combined with this type of intuitive knowledge.

Scientism as a worldview doesn't allow for this -- maybe Scientism isn't the ultimate worldview, Dragonslayer.

[dragonslayer]

Luna, I for one am happy science doesnt allow for gut level conclusions. I believe feeling and intuition have no place in science...  Others feel differently.. I realize that.. However, this is a board where information is shared..  If people start claiming facts that are not facts at all but feelings and intuition, I believe the value of the board takes a big hit.

Just because some people believe harvoni causes cataracts to worsen, or polyps to develop doesnt make it true simply because somebody has a feeling that it is.  If you allow intuition, gut level feelings, etc, to enter the equation, youre going to be reading a whole lot of crap that has nothing to to with what really is.

I know, the alternative healthcare folks and the faith healers will have a problem with my point of view, but until Im shown differently, Ill believe that the best way (only way?) to get at whats true and what isnt is via the scientific method.

Let me go a step further.   If we used feeling and intuition to guide our medical research, how would it work? Presumably almost everybody has different feelings and intuition, gut level responses, etc.   How would a study ever be undertaken if not through the rigors of the scientific method?  How could everybody get on the same page if they were dealing with individual feelings about the causes of things and not observable data leading to undeniable conclusions? 

Feelings and intuition are great at the beginning of a discussion, or in any number of social encounters.. But in order to get at the truth, to not engage in fallacious thinking such as A causes B because  A came before B, to really know what's what, I dont see how you do it without the principles of science.

[Luna7]

I think the problem, Dragonslayer, is that this is not just a Scientific forum -- it's also a support forum where we need to respond to other people's feelings. Many have been feeling sick for awhile, and even if not feeling sick they are worried about what could be an early death, or becoming severely sick in the future. In other words, people who come here have had their confidence shaken and need to regain a sense of what is true for them -- they need to trust in themselves again. So we need to tread lightly. This 'trusting in themselves' might not embody the Scientism you try to cram down everyone's throat here.
What if, say a partner of yours said "I have a headache, man it hurts, I think I shouldn't have eaten those crackers". Would it be wise to just blurt out "you don't KNOW if the crackers caused that"?  To respond in this way is insensitive and bordering on abuse. There are better ways to respond -- ways you could lead them into finding out what might have caused the headache so their suffering would cease, yes, but in a way that is not so confrontive and in a way that responds on a supportive emotional level. Telling people they are not adhering to logical principles just doesn't cut it.

[dragonslayer]

I think the problem, Dragonslayer, is that this is not just a Scientific forum -- it's also a support forum where we need to respond to other people's feelings. Many have been feeling sick for awhile, and even if not feeling sick they are worried about what could be an early death, or becoming severely sick in the future. In other words, people who come here have had their confidence shaken and need to regain a sense of what is true for them -- they need to trust in themselves again. So we need to tread lightly. This 'trusting in themselves' might not embody the Scientism you try to cram down everyone's throat here.
What if, say a partner of yours said "I have a headache, man it hurts, I think I shouldn't have eaten those crackers". Would it be wise to just blurt out "you don't KNOW if the crackers caused that"?  To respond in this way is insensitive and bordering on abuse. There are better ways to respond -- ways you could lead them into finding out what might have caused the headache so their suffering would cease, yes, but in a way that is not so confrontive and in a way that responds on a supportive emotional level. Telling people they are not adhering to logical principles just doesn't cut it.

Luna, I hear you.  Clearly youre onto something.  Im not trying to be harsh when I tell someone, 'you dont know you lost part of your voice from Harvoni' , it just seems so obvious to me that you cant simply create a cause for an event you dont like the outcome of.  You cant claim to know something which is virtually unknowable.   Im not even sure Im being unsupportive when Im trying to glean the truth of a given situation.. Isnt  it just as important to seek the truth as it is to support someone?  Why are they mutually exclusive?  People are here to learn, just as much, I would imagine, as they are here to get comfort, and, unfortunately, it appears that, to you,  these goals are often at odds with one another.

Ill use cataracts as an example. If I posted, 'Im so upset.. I can hardly see now from these damn cataracts..  I KNOW Harvoni did this to me..', would it be wrong for someone to ask me how I knew that Harvoni caused it?   Or should any kind of conclusion from any kind of feeling, no matter how illogical it appears, be supported and coddled?  Im not sure which approach is really more supportive.   And what about the noobs who come here eager to learn about their newly diagnosed illness. . Arent they entitled to some truth as well?

I see your point though.. Its complicated and many sided, isnt it?!

>>This 'trusting in themselves' might not embody the Scientism you try to cram down everyone's throat here.<<

Really?   Wow....Scientism?  Surely, you jest.  Guess we should have left our cures to the faith healers and the quacks..  Guess we should have left our health in the hands of the anti science-crowd.   Say what  you want. Our cures are the result of this science you seem so to abhor.

[lporterrn]

It must feel great to be singing again Folsom. Thank you for sharing your experience. So glad the outcome was good!

[Luna7]

Luna, I hear you.  Clearly youre onto something.  Im not trying to be harsh when I tell someone, 'you dont know you lost part of your voice from Harvoni' , it just seems so obvious to me that you cant simply create a cause for an event you dont like the outcome of.  You cant claim to know something which is virtually unknowable.   Im not even sure Im being unsupportive when Im trying to glean the truth of a given situation.. Isnt  it just as important to seek the truth as it is to support someone?  Why are they mutually exclusive?  People are here to learn, just as much, I would imagine, as they are here to get comfort, and, unfortunately, it appears that, to you,  these goals are often at odds with one another.

Ill use cataracts as an example. If I posted, 'Im so upset.. I can hardly see now from these damn cataracts..  I KNOW Harvoni did this to me..', would it be wrong for someone to ask me how I knew that Harvoni caused it?   Or should any kind of conclusion from any kind of feeling, no matter how illogical it appears, be supported and coddled?  Im not sure which approach is really more supportive.   And what about the noobs who come here eager to learn about their newly diagnosed illness. . Arent they entitled to some truth as well?

I see your point though.. Its complicated and many sided, isnt it?!

>>This 'trusting in themselves' might not embody the Scientism you try to cram down everyone's throat here.<<

Really?   Wow....Scientism?  Surely, you jest.  Guess we should have left our cures to the faith healers and the quacks..  Guess we should have left our health in the hands of the anti science-crowd.   Say what  you want. Our cures are the result of this science you seem so to abhor.

I probably should just drop this but I need to clarify.
I don't abhor Science -- I have a great respect for Science.
Nor do I think we should leave our health to the "faith healers and quacks".
It is Scientism that I don't like.  Science is not the same as Scientism.

[Lynn K]

OK so I have never heard the term "Scientism" so I googled it

Wikipedia says:

Scientism is a belief in the universal applicability of the scientific method and approach, and the view that empirical science constitutes the most authoritative worldview or the most valuable part of human learning.

I would have to say that is my opinion of science and the scientific method in general. That even for those things we do not have an explanation for at this time that eventually with study we should be able to find the cause of most natural phenomenon that we currently cannot explain.

It does seem to me that for you scientism is some sort of pejorative term. I am at a loss to see how believing that the scientific methodology of understanding, evaluation and discovery could be anything but beneficial for all.

Lynn

[folsom]

Regarding the Wikipedia definition - the last sentence is quite important...
 "....constitutes the most authoritative worldview or the most valuable part of human learning—to the exclusion of other viewpoints."

I think that this would be a fascinating discussion to have with friends at a dinner party - to hear a variety of viewpoints and perspectives in a completely safe environment.

Thanks all for the wonderful brainfood
(in case anyone thinks there is a hidden snark here, there isn't. I'm sincere and friendly, grateful to witness sharp minds working things out together )

[Lynn K]

OK yes I did see that but felt that was more of the "eye of the beholder" that the person hearing the opinion could feel or believe the other person can only see things from a scientific view so I guess that is where the negative perception of the scientific view could come from.

I must confess I really do feel that way about science perhaps not to the exclusion of other views but that it would require further scientific examination to prove the situation at hand.

Say for us here the common discussion that a given medical problem a person is experiencing post treatment they have the opinion that it was as a result of treatment. I will agree that could be possible but will only believe that to be true once the condition relative to treatment is proven that it was in fact cause by the medicine.

Prior to scientific proof it is only opinion, conjecture, and anecdotal at best.

That is my concern with some comments being made on the forum of late is people stating as fact their medical problems are caused by treatment when they cannot know that as a fact to be true. All they know is they took a medicine and now have a medical concern but whether or not it was related to treatment is yet to be determined.

So not sure how wanting a concern to be scientifically evaluated to find the truth really rises to the "exclusion of other view points"

Hopefully we here are all seeking the truth.

[dragonslayer]

As you already know, Lynn, Im 100% on board with what you're saying.  Given this definition of scientism:

"Scientism is a belief in the universal applicability of the scientific method and approach, and the view that empirical science constitutes the most authoritative worldview or the most valuable part of human learning—to the exclusion of other viewpoints."

it begs the question that if not the scientific method, then what?

[Luna7]

Say for us here the common discussion that a given medical problem a person is experiencing post treatment they have the opinion that it was as a result of treatment. I will agree that could be possible but will only believe that to be true once the condition relative to treatment is proven that it was in fact cause by the medicine.

Prior to scientific proof it is only opinion, conjecture, and anecdotal at best.

That is my concern with some comments being made on the forum of late is people stating as fact their medical problems are caused by treatment when they cannot know that as a fact to be true. All they know is they took a medicine and now have a medical concern but whether or not it was related to treatment is yet to be determined.

Regarding Scientism, I think some are offended that Science is butting into areas it should not be butting into. For example, the meaning of life and other philosophical questions. There is this irritating notion that we can actually progress and tame the Universe, when in reality the Universe is at this very moment in the process of kicking our destructive arrogant as*es right off the earth. My spiritual philosophy is that we belong to the Earth (and that the Earth does not belong to us).

But back to the case at hand, with Folsom's thread, I agree that from your viewpoint we can't know for sure (in an objective way) if, say, the DAA's caused Folsom's voice problems. But out of respect for Folsom I take her at her word -- I don't automatically think she's some idiot who walked out the front door when it suddenly  started raining and so now thinks she causes rain by walking out her door. I trust, based on my limited observance of her on the forum, that she does have a basic understanding that correlation does not always equal causation and feel no need to give her a mini lecture on either logic or Scientific principles.

Also, there are many, many variables we are not privy too that she might use to construct her truth and arrive at the conclusion that the DAA's caused her problem.
For example, I KNOW that the DAA's caused an allergic reaction on the 2nd day I took them. There are so many variables I thought through to arrive at this conclusion. Variables like,
* The fact that I had never experienced this type of reaction before (where I kept coughing and feared I would cough so much I couldn't breathe).
* The fact that I had not eaten anything out of the ordinary that could be causing this (even though sulphurin grapes was discussed at the time, I ate them all the time on treatment with no effect so now don't believe that contributed).
* The fact that I was not doing anything out of the ordinary that could cause coughing -- I was simply sitting at my desk.
* The fact that I discovered later that allergic reactions often happen, if they do, on the 2nd dose of an allergic substance (it was the 2nd day I took these).
* The fact that I actually seldom cough at all.
* The fact that some people ARE alergic to these medications
* The fact that there are a sh*tload of excipients in DAA's used to bind, color, and preserve -- some of them even labeled as possible carcinogens and banned in other countries (and along with this the fact that many people are allergic to dyes and preservatives).
* The fact that I had been eating pretty clean for awhile and it is known by many who eat cleanly and attempt to avoid processed food that they will start having immediate reactions to toxic stuff.

Now I will never say I am 100% sure because that is not Scientific, but even Science will admit its truths are not 100% and they leave room for doubt and further explanations and changes. Yet I KNOW, and I feel confident saying that I KNOW, that the DAA's caused the allergic reaction in me. Sometimes the evidence is so overwhelming that I believe it is okay to say you know something in your personal experience even though there is not yet a test to prove it (or perhaps never will be).

[Luna7]

Really?   Wow....Scientism?  Surely, you jest.  Guess we should have left our cures to the faith healers and the quacks..  Guess we should have left our health in the hands of the anti science-crowd.   Say what  you want. Our cures are the result of this science you seem so to abhor.

Dragonslayer, you were using using Science in the service of your ego, and that is why I charged you with Scientism.
Scientism, if anything (and people debate what this means and the word is evolving) is taking Science where it should not go.
You feel compelled to point out to people they are committing logical errors when they reveal side-effects when what you are really doing is saying "You are wrong because I believe there are no major side effects from these drugs", all the while using this Science explanation as a way to bolster your opinion, believing you have the authority of Science on your side.

There are many other instances when you could point out that people are confusing correlation with causation, but you only do that with this one issue where you are convinced there are no major side-effects to these medications.
Now you did change your tune a bit at one point when confronted, to where you now admit it's not logical to say they could absolutely NOT cause them, but your slant is very clear.

It's okay to have a slant on things, and I'm sure it's clear I have a slant towards believing these meds do cause very serious side-effects for SOME people.
My evidence comes from reading about how DAA's work, how mitochondria work, the effect DAA's have on mitochondria, the damage to mitochondria from other similar medications (lots of studies on this), the fact that using drugs to alter gene processes so that they are unable to replicate and/or function in other vital ways is in it's infancy and poses great danger if done incorrectly. The best of the best doing this work will admit that what they know is infinitesimal compared to what could be known.
I don't need some specific test/abstract to tell me "DAA's cause mitochondrial damage". However, even that is out there if you would just bother to research.

[Lynn K]

I am really glad we seem to be getting to a point where we can discuss this intelligently there was some name calling going on by some so I hope we can continue to treat others with differing opinions with respect.

From above:
"Regarding Scientism, I think some are offended that Science is butting into areas it should not be butting into. For example, the meaning of life and other philosophical questions. There is this irritating notion that we can actually progress and tame the Universe, when in reality the Universe is at this very moment in the process of kicking our destructive arrogant as*es right off the earth."

I haven't had this experience of science types butting into the realm of philosophy but being on the science side I guess I would tend not to. Obviously science cannot answer philosophical questions as to the meaning of life or even the old if a tree falls in the forest does it make a sound. While scientifically I would argue that it must make a sound I cannot prove that as by the very act of  trying to  prove by say setting a microphone I change the rules of the question (if no one is around to hear)

I personally haven't seen any evidence of any spiritual phenomena. I am agnostic verging on atheist. I believe in what I can see or what can be proven but I entirely respect you right to believe as you do.

I guess most of my concern is for those just coming to the forum having just learned they have hep c or even advanced liver disease and already very afraid for their health then reading about so many talking about side effects they are sure were from treatment. I am sure you remember how concerned you where when you found out you have hep c. So they come here afraid looking for answers and they leave more afraid and afraid to treat with medicine that will likely cure their hep c and that they statistically speaking won't have the unfortunate problems some of you are facing.

That is my concern and why I just hope we can find a way to discuss some of these concerns maybe in a less alarmist manner that some have chosen to use.

Just my 2 cents

Getting off my soap box now

Peace out

[dragonslayer]

Dragonslayer, you were using using Science in the service of your ego, and that is why I charged you with Scientism.
Scientism, if anything (and people debate what this means and the word is evolving) is taking Science where it should not go.
You feel compelled to point out to people they are committing logical errors when they reveal side-effects when what you are really doing is saying "You are wrong because I believe there are no major side effects from these drugs", all the while using this Science explanation as a way to bolster your opinion, believing you have the authority of Science on your side.

There are many other instances when you could point out that people are confusing correlation with causation, but you only do that with this one issue where you are convinced there are no major side-effects to these medications.
Now you did change your tune a bit at one point when confronted, to where you now admit it's not logical to say they could absolutely NOT cause them, but your slant is very clear.

It's okay to have a slant on things, and I'm sure it's clear I have a slant towards believing these meds do cause very serious side-effects for SOME people.
My evidence comes from reading about how DAA's work, how mitochondria work, the effect DAA's have on mitochondria, the damage to mitochondria from other similar medications (lots of studies on this), the fact that using drugs to alter gene processes so that they are unable to replicate and/or function in other vital ways is in it's infancy and poses great danger if done incorrectly. The best of the best doing this work will admit that what they know is infinitesimal compared to what could be known.
I don't need some specific test/abstract to tell me "DAA's cause mitochondrial damage". However, even that is out there if you would just bother to research.

Hey Luna,  Im really not taking issue with folks reporting side effects.. And Im not denying they produce adverse effects in some people.  I would never object to anybody claming that they think a given symptom they are experiencing comes from the treatment theyre taking.   I only object to the certitude with which some claim they know a given adverse effect is related to treatment without any real evidence.  Ive always said its possible. Youve never heard me say its impossible that some symptom is a bonafide result of the drug.   But I know  human nature, and I know how often folks look for a cause where there is none.   Im very practical by nature. I believe that until it's demonstrated, its an anecdotal report and not a fact.. Thats my world view.   So because our world views are disparate, we come to different conclusions about phenomena.    Ill try and respect your view, if you can respect mine.  But Ill never accept anecdotal reports in the place of hard, proven data leading to scientific conclusions based on its analysis.  Its not that I dont think anecdotal reports can be true; rather its that their truth cant be known without further investigation. 

>>Now you did change your tune a bit at one point when confronted, to where you now admit it's not logical to say they could absolutely NOT cause them, but your slant is very clear.<<

As Ive said, Ive never denied that side effects and symptoms exist; only that in the majority of cases, its not possible to know for sure that a given adverse event is directly  related to treatment. As for my slant,  sure its clear; as is yours.

>>However, even that is out there if you would just bother to research.<<

You have an unfortunate way of putting things.... More aggressive than really is necessary, like claiming I " try to cram 'Scientism' down everyone's throat here"  .  Its a lie.   Scientism defined:  "thought or expression regarded as characteristic of scientists; excessive belief in the power of scientific knowledge and techniques".  I dont see how one can excessively believe in the power of science  any more than one can excessively believe in the thirst quenching power of water.   Only a luddite would believe such a thing.....  You have no way of knowing I havent 'bothered' to research it myself!  And believe me, its certainly no bother..  Research is my middle name. 

[lporterrn]

These are some fabulous points, but sometimes compassion gets tossed aside. We are already wounded, and wounding each other defeats the purpose of this forum.

I hope we can tolerate our differences, perhaps even care about each other despite the differences. So before things get more out of hand, I am locking this topic.