Congratulations on EOT, rohcvfighter! Thank you so much for telling your story

You are an activist in the truest and best sense of the word, and in the best way possible.

Respect!

Fitz

All of this makes a lot of sense, Price.

Haven’t talked about 4 week labs much, but the progress that has been made is rather incredible. Several areas that were abnormal have just snapped back into the normal range like a rubber band. One of those is Glucose, which had been on the high side for years, now solidly in the normal range, along with just about everything else.

Still have a slight calcium deficiency and had started taking Vitamin D to see if that will help.

More than anything, I am beginning to see effective DAA treatment as a sort of panacea for HCV sufferers. This stuff is a real miracle! It is becoming clear to me that this disease is so much more than just a liver ailment. It really appears to be an entire package – a syndrome if you will with the HCV virus at its core, wreaking absolute havoc throughout the entire system.

I have to think that if the health care system looked, really looked, at the big picture with regard to the cost/benefit relationship of curing HCV Syndrome, the standards for initiating treatment would have to change dramatically. However, it is clear to me that this information has not been compiled, cross referenced and presented in an effective way to the medical community, because most of them don’t seem to have the slightest idea about it. The level of ignorance is tragic, and astounding!

Went back and voted 3 times per machine.

Told my specialist about this today. She was excited to hear about it. If this works as anticipated, you are the next Elon Musk Dr James (only better and nicer). Please let us know if and when you plan to go public. This is citizen science at its very best, and Joy is dead on – a disruptive technology to be sure!

Smiling from ear to ear (as much as my chewed up nose will allow)!

Politicians don’t solve our problems for us. They only do what is right if it benefits them personally, or if the pressure to do so becomes too great to resist.

The positive work we are doing here is what applies pressure on the system to change. Let’s keep doing what we’re doing.

En solidarité

Congrats on SVR! Woo hoo!

Thanks so much for posting this, Meg! I have been looking into this, and while I have not been tested for Cryoglobulinemia, have had all of the classic symptoms. It is astounding that physicians here in the US seem to know nothing about it, and even when patients have ‘Cryo’, don’t seem to know what they are looking at, or that it is even associated with HCV.

The arthritis aspect of the disease is particularly concerning to me since I have had a Birmingham hip resurfacing for my left hip, a complete hip replacement for my right hip, and recently a surgery to correct a severe spinal stenosis. All since 2010. Since I have or had other symptoms associated with ‘Cryo’, I am looking at this very hard as the source of severe joint issues for which there is no family history.

This is really terrible stuff, and another compelling reason to get treatment for HCV as soon as possible. An excerpt from the article Meg posted follows:

“In a French study of 36 patients with type I cryoglobulinemia, skin or vasomotor symptoms were present in 75%; nephropathy in 30%; and neuropathy in 47%. The underlying B cell disease was a nonmalignant monoclonal gammopathy in 36% and hematologic malignancy in 64%.Treatments included fludarabine and rituximab-based regimens. Five-year survival was 82%.[3]”