Well this is interesting

[me2]

I'm in a rush out the door at the moment (which is all too rare) but I thought this article had some interesting implications and I want to research that medication I've never heard of "Ampligen, which rebalances the immune system."


CFS: One Disease and Its Costs White House Chronicle (http://www.whchronicle.com/2012/04/cfs-one-disease-and-its-costs/)



DOH' I couldn't resist a quick search and found this too http://www.research1st.com/2011/10/19/rituximab-trial/

This article has some interesting comments on how Rituximab works.

[Debbie C]

That is very interesting ! I googled it and it is also known as Rintatolimod.It was tested on hiv patients and also for chronic fatigue. The FDA refuses to approve it saying the isn't enough clinical evidence on it. But it also states it is used in e.r.'s in Canada ( Phil have you ever heard of this ) and also in the U.K. and Belgium. I believe there are cures out there for so many things but its all about money and politics.

[pberggren1]

I have never heard of this.

[Al]

Problem is, Kirk, Ampligen is pretty controversial. It has never been definitively shown to work to ameliorate the ailment in question (CFS). Most of the positive reports seem to be anecdotal, which is not enough to satisfy the FDA. Its putative method of action is to bind to one class of toll-like receptors (which are heavily involved with determining what is "self" and what is not). As other classes of TLRs are implicated in many autoimmune diseases (including WG), I personally believe that this is an interesting approach, and worth investigating. On the other hand, I can't afford to fund all the research....

Al

[me2]

Hi Al, buenos noches,
WELL Al, I thought you might have some learned input. Do you know that I am old enough, and was diagnosed long enough ago, to remember when Bactrim use was controversial? My story from this time period is very long but let me say that I was fortunate enough to meet the doctor who 'discovered' the unique role that Bactrim can play in WG treatment - Dr DeRemee . He was retired but attended the same Vasculitis Foundation event in Kansas City as I did. I went to his lecture and got to talk to him afterward.
His discovery was based on the observation of ONE patient. Dangerous ground to extrapolate from , but he did. Anecdotal to the max eh?

Add to this the fact that I began Rituxan treatment , and fought with my insurance company, before it was approved.
But, so as not to sound too feisty, prior to Rituxan I also did a year of Enbrel at my own expense, BEFORE it was found to be completely useless.

So my track record (and my doc) is not perfect.

What am I saying? I've cut myself on the cutting edge before.
I'm glad to hear that you think the approach has promise. That means it has not reached the 'Enbrel' stage and may prove to be useful.

I cannot fund the research either, but I fund my insurance company which forks out TONS of dough to the guys who do.

[Al]

Most doctors are skittish about extrapolating form anecdotes, Kirk. There are understandable reasons for this, of course, but: In point of fact, everyone is an individual (duh!), and the wise clinician understands this and is, occasionally, willing to try a new direction based on individual contexts. This does not mean that the action taken is always effective, but the error is one as active one, rather than one of passivity. Somehow, I like this way better.

Al

[me2]

You are very right about extrapolating from anecdotes. Believe me, I get it. I've been on the bad end of it.
ON the other hand , this 'can' be the growing edge. I was taking Rituxan before it was 'approved'. There is no easy answer to this scientific delema. 'First do no harm' is passive.
I too prefer to err on the side of activity rather than bum covering safety. My doc, is literally a world class physician and scientist at the University of Washington and he has somehow taught me both caution and boldness.
Probably, I could have lawsuits against him if I cherry picked his 'bold' moments but then I loose the total guy - who is someone who really cares whether I make it or not.
I even indirectly turned him in to his medical director in fairly recent times when I knew I was not being treated properly.We spoke about it briefly and got back to being on good terms. I think after thirty plus years with the guy he knows at the very least my concern was genuine. The medical director basically 'ruled' on my side by getting me instant results beyond what I was asking for.
A supportive and wise Aussie nurse played into the story also... I should be writing a TV show.

I have a wild anecdotal story to try on Dr Science soon. We shall see how he stands up to the challenge. He is a seasoned dog but not jaded - I'll give a full report when I have the info. I like having a scientist Dr., it means he keeps an open mind (usually).