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TOPIC: Patient Zero

Patient Zero 3 years 7 months ago #225

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My name is Nevil and I used to have Hep C until just recently. I was diagnosed in 1978 with non A non B hepatitis. Hep C was unknown in those days. There were no symptoms and I thought that I must be immune due to some sort of genetic superiority. I had illusions in those days.

In 2004 I went to the Doctor complaining about the usual Hep C symptoms. A blood test was done and I was told I had Hep C. Bugger! There goes my super human status. I was offered the standard Interferon/ Ribavirin treatment, but after researching the reports from people who had undergone the treatment, I decided against it.
I was type 1A, which was the most difficult to treat with these medications and the treatment was not without great risk to my health. I decided to wait in the hope that something better would come along.

As time went on my condition deteriorated and chronic fatigue plagued me to the point that I was barely able to look after myself. Then disaster stuck. I had fevers and headaches, coupled with joint pain and swollen ankles which were so bad, I could hardly walk. I thought that I was entering the terminal stage of the Hep C. I went to the hospital emergency dept. and was given a couple of Panadol Forte and no real explanation of what was going on. Finding the experience far from satisfactory and not really being in the position to travel, I remembered hearing something about Skype Doctors. It was worth a try and I sure was sick of waiting rooms.

Dr. Freeman at GP2U took on my case and had the foresight to test me for Ross River virus. It came back positive. Not exactly great news, but at least I wasn't dying yet. My perceived brush with death caused me to look seriously at the options for Hep C treatment. I'd heard about Harvoni and how effective it was with type 1 cases. The trouble is, it cost near $100,000. Some friends of mine decided to try and raise the money, but it was a lot of money to raise and it was going to take a while. I no longer felt that time was on my side and I'd heard that the price varied from country to country. Dr Freeman and I had decided on exploring the idea of going India for treatment but then discovered that Ledipasvir was not available there and the Sofosbuvir/ Ledipasvir treatment was the best treatment for type 1 cases. A friend suggested looking at China to source the drugs.

Suffice it to say, the purchase was successful at a fraction of the normal price and the drugs tested pure. After 4 weeks of treatment I tested Negative for Hep C and my liver functions have returned to normal. Miraculous really. I'm nearing the end of my 90 day treatment and I really want to urge you, if you have Hep C, not to procrastinate. Time is not on your side. Right now there is a window of opportunity to obtain effective treatment with quality drugs at affordable prices. We don't know how long that window will remain open. Believe it or not, there are people who would rather see you suffer and die, than offer affordable treatments. It's conceivable that they might try to stop the importation of cheap generics.

Every life is worth saving, start with your own.
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Patient Zero 3 years 7 months ago #227

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HI Nevil

For you, many thanks:

The fair breeze blew, the white foam flew,
The furrow followed free:
You were the first that ever burst
Into that silent sea.

An extract and variattion on Samuel Taylor Coleridge's Rime of the Ancient Mariner
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
Last Edit: 2 years 10 months ago by emilio.
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Patient Zero 2 years 10 months ago #17723

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For all the guests and new members, wanted to bring TTT the post from a pioneer almost
9 months ago. It is a "success" post with a prophetic message in the second half of paragraph
5.

Hopefully, the powers to be and to be had, including the pharmaceuticals, can someday have the
mindset of Dr Salk. Unlikely, but stranger things have happened.

Nevil, you only have one post, so hopefully you will be SVR forever and Emilio,
we know you are currently getting there. We thank you both for having the
courage so that others can follow in your footsteps.


click here fixhepc.com/forum/redemption/475-redemption-3-is-open.html
contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24
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Patient Zero 2 years 10 months ago #17724

re_roll wrote:
For all the guests and new members, wanted to bring TTT the post from a pioneer almost
9 months ago. It is a "success" post with a prophetic message in the second half of paragraph
5.

Hopefully, the powers to be and to be had, including the pharmaceuticals, can someday have the
mindset of Dr Salk. Unlikely, but stranger things have happened.

Nevil, you only have one post, so hopefully you will be SVR forever and Emilio,
we know you are currently getting there. We thank you both for having the
courage so that others can follow in your footsteps.


click here fixhepc.com/forum/redemption/475-redemption-3-is-open.html


Beautiful post Nevil #love
SVR 24
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Patient Zero 2 years 10 months ago #17726

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And for the record Nevil is now past SVR24
YMMV
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Patient Zero 2 years 10 months ago #17729

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Ty for bumping up this post
I followed Emilio here asap after Dec 1 knockback
Thanks Em
Thanks Neville
Rawk
SVR 8 and on way to 12 yew!
Ariel who is also saying treat NOW :+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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Patient Zero 2 years 10 months ago #17730

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Wow such a great story Patient Zero. It gave me much joy to read about you.
Cheers to you, Dr Freeman and SVR24! #love
Blood transfusion in 1992 - Diagnosed in 2007
Tx naive -G1b - F1
VL 2.270.000
ALT 40
Start tx June 4th/2016 with DAAs - Sof/Led from India
Bloods on two weeks of tx (June 18th)
AST 17 - ALT 10 - GGT 19
Virus UND
Bloods on six weeks of tx (July 16th)
AST 17 - ALT 8 - GGT 12
Virus UND
EOT on August 8th (did 9 weeks and 3 days)

SVR 4 Virus UND (September 7th)
AST 13 - ALT 5

SVR 14 Virus UND (November 12th)
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Patient Zero 2 years 10 months ago #17732

Onya Nevil! by not bowing down and accepting the status quo you have helped 1000's of others #flower #flower big heartfelt thank you from me.
SVR 24
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Patient Zero 2 years 10 months ago #17733

What a heartfelt post Nevil. So glad you found James Freeman and this forum. Sounds like you also are cured. :) :)

The wonderful people on this forum are by far some of the most knowledgeable, bravest, nicest, funniest people I have had the pleasure of knowing and although I am now cured I hope to be able to stay in touch into the future.

Cheers Lynne
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
Last Edit: 2 years 10 months ago by Lynne-Francis-facebook.
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Patient Zero 2 years 10 months ago #17740

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Thanks re-roll for reminding us of this post.
Thanks Nevil for being such an intelligent, courageous and encouraging trailblazer. Great to see your SVR result via Dr James.
Those of us who have followed in your footsteps are thankful to those who made those first steps.
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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Patient Zero 2 years 10 months ago #17753

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Thanks for reposting this re-roll!

Nevil is a legend and we should all give thanks. For the record I was svr 12 about 4 weeks ago after doing 18 weeks of sof/dac. I guess i will eventually do another test svr24 but the thinking now is that svr 12 is cured?

In August 2015 when I was organising my meds through Mesochem and James, daclatasvir was a 'real world' unknown, however, the only true NS5A pangenotypic on the planet. Most if not all people were seeking ledipasvir however based on the small Ally 2 trial and a gut feeling I chose to do the sof/dac combo. Turns out that it's a pretty decent combo thankfully.

I owe my life to Greg (who i met first), Dr Freeman, Nevil and the enigmatic Rachel from Mesochem. However I could not have done this without the support of all my friends here at fixhepc, I love you guys. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
Last Edit: 2 years 10 months ago by emilio.
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Patient Zero 2 years 10 months ago #17760

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And I owe SVR 12 status to all the above, including you Emilio!
I had never read "Patient Zero's" post until today!
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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Patient Zero 2 years 10 months ago #17859

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Back in November 2015, when I visited Tasmania, Andrew told me that FixHepC had treated about 350 people.

Since the web site now shows some 1761 members, it would be interesting to know just how many people have now been fixed by FixHepC?

Patient 351.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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Patient Zero 2 years 8 months ago #19900

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I'd like to thank you all for your kind words.
I don't really think all that much about Hep C anymore. How quickly a life threatening situation transmutes into just something else that happened to me. I suppose it also has to do with how insidious this disease is. You can have it for 30 years without it really bothering you. Even when the chronic fatigue sets in, you tell yourself that you'll probably last another 30 years, just because the first 30 were easy.
This isn't really the case! I've lost 2 friends who had Hep C who didn't make it. Both of them thought time was on their side. I tried very hard to impart some sense of urgency about receiving treatment, yet for some inexplicable reason, they just couldn't or didn't want to, take the step. So they died.
The trouble is, once you start getting sick, you end up in a negative spiral. Soon you don't have energy enough to remain active, then you find your diet suffering and then the effects start to compound. The Hep C may be gone, but that doesn't mean that everything reverts back to normal (whatever that is) once you have cleared the disease, but compared to one year ago, the quality of my life has improved enormously. The improvement wasn't instantaneous though. whilst in my weakened state, I had contracted Ross River virus and then Rickettsia, both of which knocked me around a bit. I suspect that I would not have contracted these diseases so easily if my overall condition had been better, the point being that it's not only the Hep C that can cause you distress. I suppose I'm lucky that it wasn't some form of cancer, which often attacks Hep C sufferers.
People have thanked me for helping pave the way so that others could follow. While I am quite proud of my role in all of this, I have to point out that I did it for myself. It was what you might term, an act of self love. I've had plenty of time to ponder this and it strikes me that paradoxically, I've had far more success helping others when I put myself first, than I've had trying to help others through selfless acts. I've often lamented that, when trying to help others 'the road to hell is paved with good intentions'. Maybe some of you know what I'm talking about.
The message I'm trying to impart, is that if you have Hep C, do something about it now! Whatever excuse you have for not putting yourself first is delusional. My hope is that some of the procrastinators will heed my message. Good luck!
Last Edit: 2 years 8 months ago by Nevil.
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