Veterans Claims Help

Member KC sends me these two articles on HCV treatment. I knew we’d see significant progress towards some new form of treatment considering this is America and home of the 1a genotype. The first treatment discussion is a true, Interferon-free idea and one even I might be capable of tackling. It involves a more nuanced, Plan B attack on the disease shortly after its conception, but before it can take over the body and become an unwanted resident. It shows promise in reducing viral loads (but not a complete cure ) for those of us with a prolonged, on-going infection and poor sustained viral response(uncured).

The second article is more focused on adding or tampering with the ingredients that make up the current cocktail of Teleprevir (or Boceprevir), Ribivirin and Interferon. This triple-tipped pitchfork is what constitutes what we call the Vertex regimen. For those of us with an autoimmune system dysfunction, this still remains as the poison that will kill us.

The body’s autoimmune function is a finely tuned device. It runs around checking out suspicious subjects in your system like Arizona Sheriff Joe Arpaio’s policemen. Anyone without papers gets sacked. Even some with marginal paperwork get the ax too. Adding Interferon sends the AI process into overdrive. HCV normally mutates so rapidly that the body has a hard time recognizing new replicas of the virus and developing the proper white blood cells to kill them. With Interferon added, the white blood cell count is multiplied a thousandfold and the body begins a concerted sweep to eliminate anything suspicious. The idea is to attack everything everywhere simultaneously again and again until there is simply nothing left. If you are extremely healthy, this is feasible but it still exacts a tremendous toll on some, such as permanently impaired vision, fuzzy brain,  major malaise, and fatigue which often never abate. This is why I am not a big fan of the drug. I have seen first hand the effects on many of you. The early versions were the worst. Doctors would hose us with this in unheard-of quantities in the early 90s and pretend to be astounded when our hair fell out and we went clinically blind. They had enough evidence from the test protocols of the 80s to know better, too.

For those of us who have an autoimmune disorder, our system is constantly ramped up to the point that our body’s defense is gestapo-like. Even innocent cells and organs are inadvertently attacked. It’s akin to a rabid dog chasing its tail. Thus you have situations like Fibromyalgia, Rheumatoid arthritis, Crohn’s disease and a host of others that manifest early in life and compound your misery. Throwing Interferon in on top of this is akin to dropping Napalm on a well-engaged house fire. Not only does it kill the Hepatitis, but virtually everything else-including you. Many do not know that Interferon was manufactured in the 1980s as a potential cure for cancer. It worked so well it often killed the host as well as the infection. When hepatitis showed up, they dragged it back off the shelf and touted it as the “new” wündercure.

My one and only encounter April 12th, 2007 was devastating. It might seem criminal to some, but in his haste to hose me with the IFN/Ribavirin cocktail, my hepatologist overlooked my ANA (anti-nuclear antibodies) test which clearly showed an autoimmune process at work (1:320). That one dose provoked a response of epic proportions culminating in my year’s staycation at the Seattle VAMC and four operations. My ANA shot up to 1:2510. It ignited autoimmune hepatitis because my body’s defenses decided that the liver (and the HCV inside) had to go. The gamma globulins (IgG) shot up to record levels (2514) and remain there to this day. They signal to doctors that my autoimmune system is now in high gear and busy attacking anything and everything that appears to be an invader. Where most of you simply suffer the gradual, measured march towards cirrhosis, my liver is being decimated from two different directions simultaneously. Admittedly my viral count stays low due to my AI response, but the Battle in Seattle over my liver is losing ground at twice the normal speed.

After the Interferon subsided, the HCV ran amuck. My viral load jumped from 227,000 to 8.5 million. My Crohn’s, in remission since 1996, came back with a passion and promptly collapsed another 30 cm. of my small bowel. And on and on. What is most frightening is that further testing shows the disease is merely similar to Crohn’s and mimics it. Several specialists attribute this to my two years of Agent Orange and Agent Blue exposure. vA will never acknowledge the role AO and its rainbow flavors play in ramping up the autoimmune disorders but they do not have to. I read in the BVA decisions which we can now view, a host of new outbreaks of Crohn’s (or Crohn’s-like)  diseases and Vets’ doctors are pointing to AO as the culprit. Crohn’s and its brother Ulcerative Colitis (the same thing in the large intestine) are young people’s diseases, usually manifesting before age 25. Virtually all the cases we are seeing in Vets are AO-exposed Vietnam troops over 55- hardly the cohort expected or predicted by virologists and gastroenterologists. All the nexus letters in the world are going to be ignored because the Nehmer Gods have spoken. Crohn’s and it’s progeny are not on the 38 CFR § 3.309(e) list. One hundred years from now scientists will be doing the V-8 headslap and saying “Jez. What were they smoking back then? That shit was lethal. Couldn’t they see that?”

I suspect this may be in part what WGM ran into when he attempted this a month or so ago. His exposure, and indeed, all of ours over many years, tends to exacerbate the body’s response to anything this insulting. Face it, a megadose of rat piss, with a side of Teleprevir salad, is often too much for even the heartiest 60 year old. He did it twice. I did it once. I considered myself in the prime of health (or as near to it as possible) when I started. Within six months my ALT was pushing 620 and the AST was following close behind. I turned into a slug and slept all day for a year before relapsing to Crohn’s and  going to the hospital. I have to hand it to any of you who could not only do it for 40 weeks but even contemplated a do-over again when it failed. The fact that any of you are alive to talk about it is astounding.

The recipe (if there is such) to turning off the AI response is to hose you with prednisone and azathioprine (Imuran) in hopes of turning off the adverse reaction. Be careful. Use of this drug so suppresses the immune system that you are susceptible to the slightest opportunistic infection that comes along. Think colds, flu and especially MRSA/e. coli. The vAMC, in its inimitable wisdom, elected (or neglected) to take me off these two medications when they did surgery. What most do not know (and doctors do) is that prednisone weakens the fabric of the skin-all skin. Skin inside you that comprises the small bowel, for instance. This is theorized as to why my small bowel resection (anastomosis) failed (twice). It took vA doctors almost 3 months following my ileostomy before someone noticed I was still on this stuff and they opted to discontinue it. Believe it or not, I was queried as to why I had not mentioned it or brought it to their attention. Another classic example of blame the Vet.

While I rejoice every time I hear of some great stride forward in the bug war, I remain convinced that they will have to invent a new wheel. The DRACO protocols look the best so far but I hope for a cure that coats or wraps the virus up and prevents it from reproducing.  DRACO causes cell suicide in RNA viruses which would appear right down HCV’s alley. Whether it will induce Vet suicide is the great unknown. Next up would have to be a way to regenerate the liver or convince it to repair itself. It’s the one organ we have that is capable of doing so spontaneously without any persuasion. This assumes there is something left to regenerate and that the disease has not progressed so far as to preclude it. What the hey! That’s what transplants are for. The second article addresses that scenario, too.

So thank you, KC, for spotting these new protocols. Would that those of us too sick or incapable of utilizing Vertex could be the guinea pigs. Time is running short for many as witnessed by our ever-smaller numbers of long-term survivors. I would also suggest being very wary of vA ARNPs bearing Vertex gifts and trying to induce you into attempting it. Vertex still embraces the Interferon blowtorch.  If you were not a candidate for IFN treatment before, adding the Teleprevir will not make it more palatable or feasible. Uneducated vA chuckleheads may not be aware of this. My vA pseudohepatologist in training seemed to think I could hack Vertex. I had to remind her why I wasn’t going to be a guinea pig yet again. Remember folks-they are practicing medicine. This is a far cry from performing it. Be your own best medical defense. If I had read the small print on the circular that comes with the Pegintron autoinjector styrette, I would have known it was “contraindicated” in patients who have a systemic AI issue. Too bad my doctor didn’t read that.

Remember full well there are highly-trained vA  medical personnel out there who continue to hold that absence of evidence of HCV in 1970’s medical records is conclusive proof that Vets were not infected in service. Some of these VHA experts have gone on to say that the fact that HCV was not diagnosed until 2007 when the Vet finally went in to get tested is conclusive proof of recent infection. Now, compound that with the same experts opining that a negative Northern Blot test result (for HIV) is definitive proof that a Vet was not HCV-infected in 1988. The Southern Blot was developed in 1989 and was the first proven test to identify HCV as a separate and distinct RNA virus. Having a degree in medicine is no guarantee your doctor is playing with a full deck.  The sheer volume of defective logic that emanates from the pie-holes of vHA experts is ample proof of a denial agenda in their machinations. Stage/Grade determinations from liver biopsies are still the gold standard for determining the age of an infection. Most accomplished doctors are aware of this but then again it appears most accomplished doctors are never found within miles of VAMCs.

vHA Experts