Saving lives one at a time is Yeoman’s work Mike, and you’re obviously very good at it, and very dedicated.

We’ll work on ways to cast a wider net for you, and for the forum.

Respect.

“Saccharine Harpy”, “Servant of Greed”, “Spiritual Vampire”, “Succubus from Hell” – We all know who and what we’re up against.

No use wasting energy attempting to plant the seeds of truth in poisoned earth. There is plenty of fertile ground elsewhere where truth can spread and flourish.

Here for example

This site currently has over 1600 members. If all of us could spend just a little of our time every week planting seeds of truth here and there, utilizing resources that are cost free, and focusing on areas where Hep C infections are highest, we can eclipse those nasty little corporate funded weeds with a sea of truth as far as the eye can see.

Mike,

Just a thought, but attempting to reach people who are scared to death, fundamentally brainwashed, and held captive in a closed venue by a false narrative is likely to be an exercise in futility.

Basically, you are going up against a heavily funded barrage of 24/7 non-stop advertising by big pharma across practically every conventional media platform, underpinned with forums and venues which are specifically designed to direct US Hep C sufferers into a sales funnel and keep them there, until the captors are paid off, or the captives die – whichever comes first.

As tempting as it may be to attack the saccharine harpy where she lives, frankly I think your time, experience, connections and considerable energy are far too valuable to expend attempting to claw away, and rescue her captives one by one.

Your efforts are to be applauded, and I think you are on the right path with an alternative site. When you get back from vacation, please get in touch with me at your convenience about some ideas I’d like to toss back and forth with you.

Fitz

That’s a great point, rohcvfighter. Raising awareness among medical students, and on university campuses!

While the establishment press is beholden to big pharma for advertising revenues – campus newspapers, student forums, and free press outlets are not.

As for establishment docs who tow the party line, I wonder what they would do if they were in our shoes and THEY were denied timely, state of the art treatment until they were “sick enough”.

I rather suspect that not a few doctors follow this forum with a great deal of interest.

ETA: Thurl was posting as I was writing this post. It appears we share some of the same insights.

It occurs to me that not all HCV treatments are equal in this respect. Some (e.g. Viekira Pak + Ribavirin) are known to damage the liver in the process of attempting to clear the virus, while others are not. I am not a medical person, but suspect that therapies which damage the liver during treatment are probably more likely to leave behind a higher level of Cryoglobulinemia than treatments which demonstrate improved liver function during treatment.

Many years ago, I had the experience of going from slightly elevated ALT/AST levels, to astronomically high ALT/AST levels upon Interferon therapy (ALT/AST are now only moderately elevated, but have remained far above tested levels prior to Interferon therapy). The side effects from interferon were so severe, I had to stop six months in.

Like many others (~50%) who have lived with this virus for many years, while not being specifically diagnosed with Cryoglobulinemia, I have some of the textbook symptoms. The outward symptoms ( occasional rash, bruising, edema in the lower legs) so far have been mild enough that others don’t seem to notice them. However, I have undergone three major surgeries for joint problems that no one else in my family has ever experienced.

There is nothing to prove, or disprove that the joint problems I’ve experienced are related to chronic Hep C infection, but personally…. I strongly suspect that they are.

One of the reasons I am opting for genric Sof/Led treatment rather than accepting a cheaper treatment known to cause liver damage, is that at a fibrosis score of F3, I think my liver has endured quite enough.

While my insurer, and the physicians held captive by them, seem willing in the interest of saving a little bit of money – and honestly it is not that much – to roll the dice on additional liver damage, major drug interactions, severe side effects, etc., I am not.

As I’ve said in a previous post, I’ve been there, and done that.

I’ll know soon enough whether the external and internal symptoms I am experiencing will abate with treatment, and I’ll be sharing those experiences with my fellow forum members in future posts.

Time to get well!

For ‘Life’

Laissez les bon temps rouler!

https://www.youtube.com/watch?v=k6lVxOZWqT0

So happy to learn that Joe has been approved for treatment! But, crikey! You had to appeal through the courts to get it!? I’m just gobsmacked!

As sick as Joe has been – that is both heartbreaking, and inspirational.

Respect to you, and Joe! It takes real guts and grit to stand toe to toe with the system, fight the gatekeepers for lifesaving treatment, and finally prevail.

You are one special gal, Mrs. Joe! .Congratulations to you and Joe!!! I look forward to following Joe’s recovery here on the forum.