Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
One of the issues that I keeping coming up against is when people with Hepatitis C approach their G.P. or specialist doctor with the idea of getting generic Hep C medication and the doctor responds to the idea with a negative reaction. Sometimes the doctor will refuse to monitor the treatment; sometimes the doctor says that the medicines will be fake or even toxic. Sometimes the doctor even gets angry and ridicules the patient.
Now people choosing generics to treat Hep C are always doing so because they cannot afford to buy the brand versions of Harvoni or Epclusa. In other words there are no other options for them except to get sicker and sicker.
So the big question is why do these doctors get so negative?
Personally I think it is an ego thing… or fear of the unknown; perhaps even some kind of racist notion that Indian pharmaceutical manufacturers are not capable of making medicines.
So some people a persuaded by their doctors and they wait for something in the future that might improve their access to treatment and some people take control of their life and health and go it alone and buy the generic Hep C meds and get cured.
The Hep C success story below is an email conversation thread that extends over a 12 month period, beginning in the middle of 2016 and ending last week.
This Hepatitis C survivor’s story is about a man who had had Hepatitis C for 17 years, took control of his own health against the advice of his specialist doctor and did the 12 weeks treatment on this own, getting his tests from “walk-in” labs, which are common in the USA.
Now he is cured.
I hope you enjoy the conversation.
Hi Greg,
I have saved up the money and I am ready to proceed.
Not having done this before, please let me know what I need to provide for you, and I will do so immediately.
My HEP C Virus RNA HPA Count is 3120000
HCV RNA, ser/plas, PCR is 5.49 LOG/mL
Do you need other info?
Thank you for your help!!
Dave
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Hi Greg,
I had a new set of baseline blood work done before I started treatment and met with my Gastroenterologist yesterday. When I told him what I was doing he said he would not, and could not monitor me through the treatment with generic Hepatitis C drugs.
He told me that the reliability of overseas generics is not good, and that in his opinion tampering is prevalent.
Pretty sad commentary from a medical world where commitment to curing is supposed to be paramount.
Sadly I am not surprised, but I am disappointed.
I will investigate where and how I can generate the lab work on my own.
You are probably not surprised by my doctor’s reaction to me doing generic treatment. I know I am not….
Thanks again,
Dave
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Hi Dave
Excuse me for saying so but your gastro does not know what he is talking about.
At the 2016 EASL Conference in Barcelona last year a paper was presented by Dr James Freeman (of which I was a co-author) that showed in a study of more than 400 patients that treatment/cure rates with generic is exactly the same as with the brand versions.
At this year’s EASL Conference in Amsterdam a further paper by Dr Andrew Hill, Dr Freeman, myself and others will be presented. This is a study of a further 1,000 patients and confirms the same. That there is no difference between generic cure rates and brand treatments.
It totally astounds me that any so-called expert could make the claims your Gastro has done!
best wishes
Greg
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Hi Greg,
I know you’re not a doctor, but as you know, my doctor is not a source of info anymore!!
When should I get some blood work done? I’ll have to do this at an independent lab, but that is ok. I know I won’t know until 90 + days AFTER completion of 12 week treatment to determine the results, but should I do any blood work during the 12 week time?
Probably a dumb question, but frankly….I’m pretty excited.
FYI…I’ve started the treatment and I’m feeling great, maybe better than I have for a decade!! Very grateful and hard to believe.
Thank you from all who those are being reached by your efforts!
Dave
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HI Dave
Thanks for your email and I am happy to help you with these questions.
I got a Liver Function Test and a Viral load test at 4 weeks into treatment… just because I wanted to see what was happening.
In Australia those tests are done for free by our Medicare service.
I think in the USA, using a walkin lab like www.link2labs.com you would be up for about $300 total. So if you want to see how your treatment is going they are the tests to get.
Once you have them a viral load test some time after end of treatment is all that is needed. Then another, if you want to be extra sure, 6 months after treatment.
best wishes
Greg
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Hi Greg,
As I told you in my last email, my doctor would not monitor or even talk to me about the treatment of the meds from India…. he was indignant, and wanted to go in another direction completely. I thought about it for about 30 minutes and began the treatment I ordered from you.
My doctor did a new blood work up on January 2017…. 45 days ago, to get a baseline.
I began the treatment without his blessing or knowledge on February 10, 2017. I paid for and had my own blood work done last week at week 4 1/2. I received them today.
Results from Tests January 31, 2017 before starting Treatment:
HCV RNA -79300 ( a bit down from one year prior, but we all know the number doesn’t mean much) other than you are infected.
Ferritin – 1027 Way high, as has been for over a decade. Limits 0 – 400
ALT – 157 – way high as has been for a decade. Limits 0 – 40
AST – 130 – way high as has been for a decade. Limits 0- 40
Test Results March 15, 2017 – Last week
HCV RNA – NOT DETECTED
Ferritin – 264 – WELL within limits
ALT – 25 – The LOWEST I have EVER had, well within limits.
AST – 27 – The LOWEST I have EVER had, well within limits.
As you know my story Greg, this is a miracle, after 17 years of basically…..fear…..financial impossibility, no available treatments, and constant anxiety 24 / 7, today my tests are STERLING!
I know I have to complete 7 more weeks of treatment, and check again at 12 weeks post treatment, but I also know that not all tests are clear at my stage of treatment.
I am ecstatic pleased, happy, relieved, shocked, and most of all grateful for this and for your help, communication, and the work and willingness from you to help people…..like me and many others.
I am going to keep the faith, and have some hope after 17 years of no course of reasonable cure.
Very gratefully,
Dave
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October 2017
Hello Greg,
You might recall that I bought the meds from India through your system last winter.
I emailed you to tell you of the doc’s unwillingness to monitor, or even talk about this decision. So…I moved on without him. Through my conversation with him, I determined I should do a full blood workup at 30 days to make sure all levels did not go crazy as that would require stopping the protocol.
I did that and let you know the HCV was negative, and ALL tests were WELL within limits….so I was happy, and continued the protocol.
I also determined from my conversation that I should retest 4 months after completion to see if the meds had worked. I was nervous to do this as you can imagine, because i was just sure I was going to be the guy on whom this did not work. I waited 4 1/2 months and did a complete lab work up. I had to pay for both of these labs because the doc said he would not do any follow up if I went…”rogue” (his words).
Results:
Gone !!! Negative !!! Undetected!!! All tests in limits, AST, ALT, Ferritin, Albumin, CBC…..Virus Gone, zero, zip, nada…..
After 17 years of this virus and the back of my mind fear factor…I still can’t believe it.
Because of what you are doing, and because I was lucky enough to run into another guy here in Denver who had completed this and gave me your contact information, I am Hep C Free. I can’t repay you, nor thank you appropriately, but I do want you to know how grateful I am, and what your are doing is very courageous, and admirable.
Thanks Greg, and know I am in your debt.
Regards !!!
Dave
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Greg Jefferys’ blog is provided for informational purposes and is not intended as Medical advice, diagnosis, or treatment.
Whilst Greg Jefferys is doing a PhD it is not in medicine. Any advice offered is offered in good faith and based on an extensive general knowledge of Hepatitis C and access to generic Hepatitis medicines Greg Jefferys has acquired through his work as an advocate and activist
The Hep C Buyers Club is not a company or corporate entity but simply a loose structure intended to offer a free information to people with Hepatitis C
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I have converted this diary into a kindle book for folk who might like it in that format. I have added a lot more depth than the original diary contains, it’s more of a complete story in book format. I have priced it as low as Kindle allows me to @ 99 cents. If you are interested just click here to go to the Kindle page.
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Email: gregjefferys@outlook.com
Feel free to post publicly with my name in regards to generic meds harvoni
viral load before treatment 3-29-16
1.2 Million Int’l Units
and 7 weeks into treatment
viral load <15 undetected
HCV RNA not detected
my gastro is not monitoring me however she is taking my blood work I brought my generic meds in the box and she took a picture of the box I definitely think it's ego because generic meds are exactly like regular harvoni.
Just for reference these other numbers have gotten lower….
BUN 8mg
Calcium 7.9
TSH is very low but on Synthroid
btw Many thanks to you Greg for your patience and advice is immeasurable!!! .and thanks also to Dr Freeman… xo
Thanks Lisa… not many people are brave enough to make that offer
This is a wonderful story of hope, faith and triumph for Dave. So happy for him. As you know, I hope to have the same story and results soon! Thanks for sharing! Teresa
Hi Greg, I’m from NZ and my partner has hep c generic 3, we would never be able to save the money but any suggestions, they would be gratefully received. Thank you. Sonia Trompert. Ps I had it and did a 6 month course of interferon and ribo something and mine has now gone.
A motivating discussion is definitely worth comment. I believe that you need to publish more about this issue, it may not be a taboo subject but generally people don’t talk about such issues. To the next! Many thanks!!|