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TOPIC: No good deed goes unpunished

No good deed goes unpunished 3 years 10 months ago #10276

  • dointime
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Recently I tried to help a friend who has been turned down yet again for tx because he's not cirrhotic (yet).
I told him about the buyers club and that I was taking Chinese meds.
I was met with a diatribe of uninformed propoganda, that I was crazy to even think about Chinese meds, etc. etc. - we all know the script. This rather shocked me because he is a person who has been around and on other topics he always seemed quite open minded.

Needless to say, I did not need this negative feedback while feeling vulnerable myself, even though I am confident in what I am doing. I am feeling rather shaken by it. I did not have to try and help him, but I figured that that it is what a friend does. I did what I believed was the right thing, and in that way I am not sorry, but there were unintended consequences which I would rather not have had. It has revealed a political division in the way we think that I'm not sure I can get over - namely that I believe that the propagation of the lies of Big Pharma, and the consequent widespread brainwashing, is what is causing the rationing of the meds, and the misery and the deaths from hepC. I am still trying to process this event.

dt
Last Edit: 3 years 10 months ago by dointime.
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No good deed goes unpunished 3 years 10 months ago #10279

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Hey dt
You tried. It was the caring thing to do. Call it "brainwashing" or conditioned response or whatever. It is an effective tool, whether used in a positive or negative manner. The military does it in basic training. People in North Korea think the US is full of homeless people and in a constant state of racial warfare. Its all they have ever been exposed to by the state media, so that is "their" reality. The same applies to Chinese products in the US. Most people only hear about the bad stuff: tainted baby formula, dog food and contaminated fish. Children's toys covered in lead based paint. Ignorance can be cured by accurate information but it requires an open mind.
Some people just aren't blessed with one.
M
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
Last Edit: 3 years 10 months ago by mgalbrai.
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No good deed goes unpunished 3 years 10 months ago #10280

  • LondonGirl
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I did not need this negative feedback while feeling vulnerable myself,
I totally understand that DT, I mean, it would be one thing if your friend had said that he felt unsure about that pathway and had asked further questions, or just said he had faith in the NHS (oh what we now know! frustrating!) and would rather wait, but to be 'met with a diatribe of uninformed propaganda, that I was crazy to even think about Chinese meds, etc' ....

The thing is, you and your friend are occupying completely different spaces right now. You have researched, read and interacted with all the open-minded people on this forum and you are on treatment - Your friend is still anxious, untreated and disappointed and not as up on the latest as you. As I say, different spaces. Your friend may be scared, when people are scared they often 'kick-off'.

Meanwhile, re vulnerable, read my latest on my diary here, am I going through the exact same thing, emotional vulnerability. It's quite a toughie and can be triggered by the strangest of things. It is so had for others to understand, thankfully we have our friends on here and yes, our friendships have sped along in high speed from supporting each other in times of need. :)
I had a similar thing with an online friend who on hearing that I had started this treatment sent me emails with 'PLEASETAKE CARE' at the end which I found rather unsettling. I communicate less with them now to protect myself.
propagation of the lies of Big Pharma, and the consequent widespread brainwashing, is what is causing the rationing of the meds, and the misery and the deaths from hepC
Yes. Totally agree.

but we can't expect others to be in the same stage of understanding of the situation, however you can try to protect yourself by avoiding this friend for now and trying to stay calm. I reckon he's afraid.

#love
ps the flow of this post was interrupted by someone close shouting at me saying I shouldn't be on here so much and that's why I am getting upset, No, I am getting upset because you are shouting at me :(
It's hard on others too, but they are not the ones trying to get get well or for whom stress can make you feel more ill .
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 3 years 10 months ago by LondonGirl.
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No good deed goes unpunished 3 years 10 months ago #10281

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Ha!!!
Someone else gets the old "What are doing on there all the time" routine!
I thought it was just me.....
M
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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No good deed goes unpunished 3 years 10 months ago #10282

  • dointime
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Thank goodness you get it Mike & LG!

To be honest, the experience freaked me out. At the time, I had this bizarre flash of the ground shifting beneath me, while my erstwhile friend transformed in front of my eyes into the gestapo. To be sure, these meds encourage the imagination, and that was something I was never lacking in in the first place.

I am sure that my friend is afraid, and angry. Who wouldn't be. For that reason I didn't offer any response to what he said, however he doesn't get to take out that emotional baggage on me. He will be avoided now for a while.

So maybe this is a cautionary tale for anybody on the generics and feeling vulnerable. If you are not prepared for your helping hand to blow up in your face, don't offer it. Self-protection matters at all times, but especially on tx. Brainwashing / conditioned response is an effective tool - you bet! And it is more widespread than you think. Sadly, the brainwashers win this one, but only for today. We will get well and we will get strong again, and our SVRs will be all the testimony needed to put an end to their whole charade of lies.

dt
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No good deed goes unpunished 3 years 10 months ago #10284

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I wonder if I can get Juvederm from China :unsure:

P
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No good deed goes unpunished 3 years 10 months ago #10285

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It'll take more than juvederm to patch me up, but hey, you gotta start somewhere.
:silly:
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No good deed goes unpunished 3 years 10 months ago #10291

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Hey DT, your friend may well change his tune if hard evidence of efficacy is put in front of his nose and if his mindset was to be altered by that, it would be a result. People do have difficulties getting their heads around all this generic stuff. I was in the pub with some old friends. explaining what I am doing some weeks back and the bemused question that came back to me was "why, if its the same stuff,are'nt more people doing it".
gt3 started sof dac jan 2016 now 48 wks svr. not the real wilko johnson just have the same real name. shropshire uk
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No good deed goes unpunished 3 years 10 months ago #10292

  • LondonGirl
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DT said
To be sure, these meds encourage the imagination, .

I think this should be listed as an official side effect .

So maybe this is a cautionary tale for anybody on the generics and feeling vulnerable. If you are not prepared for your helping hand to blow up in your face, don't offer it. Self-protection matters at all times, but especially on tx.

Agree - The word 'vulnerable' is cropping up a lot, it needs also to be noted as a side effect.
It makes perfect sense to me, the chemistry is changing in our bodies - and rapidly, it would very strange if that didn't affect us in some way, you know?

Thank-you DT and fellow treaters #love
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 3 years 10 months ago by LondonGirl.
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No good deed goes unpunished 3 years 10 months ago #10305

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Hey dointime
Keeping it brief but I totally get this
I purchased my Chinese generic, had my relevant bloods done and started tx
Walked into my first liver clinic since last year and the doctor there had a full hissy at me.
His receptionist also had a full hissy
And why? Because of his preference for Indian generic yup the exact same medicine
I was a wreck
What I would like to know is why has this doctor who I have lobbied for my DAAs even taking a loan to pay Gilead prices against my home at one stage firstly withheld the information he then basically bragged about re his monitoring Indian generics for several months not told me I could have already basically purchased same and now be finished tx, why did he then insist on a repurchase yet told me "oh yes I will monitor you just stay on the Chinese meds and switch when the Indian arrive"
Stressful, unnecessary, and just not helpful
So, I now have two lots of meds both the same.
At least if the worst comes to the worst and I need to extend tx after 12 weeks there are tabs in my fridge.
All the buyers club meds are legit
This sort of hoohaa riles me too
Cheers
Onwards and upwards
Ariel #love :+1:
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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No good deed goes unpunished 3 years 10 months ago #10306

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And as a footnote
I'm also trying to help a person Dointime
It's like trying to drag a horse to water but it won't drink :sick:
I just give up!
Big love
Ariel
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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No good deed goes unpunished 3 years 10 months ago #10316

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Ariel,

That is one strange story about your doc. I think it is way up there in the wierdness category. Not only could I not have made it up, but you actually had to live through it! Thank heavens you seem like the stable sort, enough to know that any mental problems around are not yours. Definitely stressful to the max though.

Yes, you can bring a horse to water but you can't make it drink. I am now officially wary of doing any more than pointing at the fixhepc website and saying - have at it or not, that's it from me. Heaven forbid I'd get involved and end up getting blamed for anything that went wrong. When it comes to an emotional issue like hepC, there's nothing as queer as folk. Makes me appreciate even more how much Greg and the Doc have stuck their necks out with the generics, and what they might have had to put up with along the way.

LG - well spotted and I agree, heightened imagination and vulnerability, now official side effects.

dt
Last Edit: 3 years 10 months ago by dointime.
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No good deed goes unpunished 3 years 10 months ago #10326

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Ariel said
why has this doctor who I have lobbied for my DAAs even taking a loan to pay Gilead prices against my home at one stage firstly withheld the information he then basically bragged about re his monitoring Indian generics for several months not told me

To requote DT in a response re my previous consultant "He is either a liar or a fool" - My best bet on that, would be the former. At best, a giant chicken and gifted in the art of deceit. It is distressing when you catch Drs telling porkies, how can you trust them after that?

DT said
I am now officially wary of doing any more than pointing at the fixhepc website
Me too unless they are asking for my own experience ...
Makes me appreciate even more how much Greg and the Doc have stuck their necks out with the generics, and what they might have had to put up with along the way.

I know, they were / are amazingly brave :ohmy:

This really is a lovely forum, I appreciate it more each day.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 3 years 10 months ago by LondonGirl.
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No good deed goes unpunished 3 years 10 months ago #10339

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Hi dt,

I'm sorry to hear of your experience with your friend while you are feeling vulnerable. There is no blame to you in what happened and you did the right thing by telling them about your treatment using generics. Your friend's initial response was unfortunate and not a nice place for you to be during the emotional ups and downs that we experience during treatment. But if they have been a long term and trusted friend then I suspect that on reflection they may well be regretting their response which could have been driven to some extent by their recent rejection for treatment and the thought that someone with who they shared a commonality appeared to have made the jump onto a moving train that they were too frightened to make?

One thing all of us here need to keep in mind when discussing generic Tx with others is that we are 'early adopters'. We are the 10-20% of the population who make an independent assessment of our needs versus the risks/benefits with only minor weighting to what the rest of the herd thinks, then we follow our own path. Most people aren't like that and I think all we can do is lead them to the water and show by example that it is safe to drink. As they see more doing so their own confidence will increase.

Imagination and these chems do strange things to our emotions while on treatment. At 12 weeks or half way into my Tx I'm not sure if this has lessened or whether I am just learning to compensate better but I have found that it is often best not to respond to strong emotional reactions but rather to consider them a side effect of the Tx and put them to one side until I can process them better, be that overnight or on a couple of occasions several days. Friendships and relationships are too important to burn on the spur of the moment and anyway it would be boring if everyone thought the same. But at least we have this site where we can come and have a good rant and get it out of our system with friends who understand. :)
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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No good deed goes unpunished 3 years 10 months ago #10344

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When you clear they will have a change of heart. I'm sure.
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Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
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