blowing off steam

[feelinghopeful]

After watching a video last night of doctors discussing C-Diff I was so angry I couldn't fall asleep for a long time. My complaint, in general, is the reluctance of the medical community to recognize fecal transplants as a viable and simple solution to a very complicted problem. There are so many variables involved in why people relapse that while research into the whys is very important, more important is a solution that addresses them all. It is not a panacea but the success rate of transplants is higher than Vancocin, and that's with relapse patients - where Vanco fails. Did Geopharma (or whatever that company's name is that produces Vancocin) forbid them to speak about fecal transplants, could the doctors not bring themselves to say the word "pooh" for fear of tarnishing their reputations, do they not believe it works? They discussed plenty of off label meds and treatments so it's not that. It appears that they are more concerned with appearances and old regime than the quality of life of their patients. If one of those doctors had a bacteria on his winky that wouldn't go away and there was a simple treatment, put this healthy bacteria there and nature will take care of that harmful bacteria, or we'll have to cut it off before you die, or worse, before it falls off.... would they stand on principle or would they be all over it?

I actually enjoyed listening to the first and last doctors. The first man seemed relatively modest and very professional and the last guy had some interesting things to say but toward the end I kept thinking, here's where they'll mention fecal transplants, no here, here.......? Nada! That's when I lost respect for all three of them. Not worth a mention.

And when it was mentioned that some patients might actually have another problems, like IBS or lactose intollerance, did it even occur to them to mention that most of the patients did not have these problems before C-Diff? That these instigated problems resolve in most cases after a fecal transplant, like in my case? Where is the curiosity? And while the unreliability of testing is discussed it was not mentioned that assays are even more unreliable than that if small amounts of toxin are present. I'll hand it to them for recommending treating on symptoms but we all know, doctors are all too willing to blow off a C-Diff diagnosis if ONE test comes back negative, let alone many. It goes without saying that testing has to be improved because doctors can't hand out Vanco everytime somebody presents with diarrhea. However, most of the presentation was accumulated data based on research and the fact that assays are even more notoriously wrong in some cases is one big piece of research to leave out. Most people have trouble getting properly treated because of their inability to get positive tests. It is critical that doctors watching stuff like this be made to understand the true unreliability of testing. For me the most important aspect of being diagnosed properly was my inability to get a fecal transplant without positive results. My GI was reluctance to prescribe more than one test at any given time. He was willing to give me more Vanco but it took a LOT to get a referal for a transplant. I did not want more antibiotics. I was sick of feeling lethal and dependent on something I could not afford were I to lose my insurance and I didn't want to contribute to the pool of antibiotic resistant bacteria. I didn't want to be a pool of antibiotic resistant bacteria. I am so grateful that by the grace of God, for the moment, I'm on the other side of this thing.

Rant over.

[sks001]

Don't know how you posted a NEW topic. I've been trying to since Friday regarding an important FDA warning on Reglan that many members use, and keep getting error message:

Forbidden
You don't have permission to access /phpBB/posting.php on this server.

Additionally, a 404 Not Found error was encountered while trying to use an ErrorDocument to handle the request.


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Apache/1.3.41 Server at cdiffsupport.com Port 80

Obviously, I can reply to an existing post ... just can't post anything new.

[feelinghopeful]

Roy,

It is that one. It was really good, too, but for one huge ommission that got me really going - perhaps too far. Not mentioning transplants is like taking away its legitimacy (poor illegitimate thing that it is). Linda responded to yet another rant in Success Stories that perhaps the reason is the lack of research. There were a number of treatments mentioned that are not indicated for C-Diff but I'll accept your explanation, Linda. Thank you. There actually are studies going on right now. It's the vaccuum regarding transplants that got me so angry. Don't endorse it but acknowledge that it exists and even if in limited studies or anecdotal, success rates are very high where documented.

I just read back my post and would like to add something. What has struck me in this 'journey' is the redundancy with which the body tries to protect our flora. It gives you some sense of the importance of it. Two eyes, two ears, two kidneys, two arms, twenty digits (for women)... and where the gut is concerned there's stomach acid, competition for real estate, bacteriocines, bacteriophages, Immunoglobulin, etc, etc.... it's amazingly complex, intertwined and stunning. This is the beauty of fecal transplants for me (as well as the fact that they work). Only with modern medicine, with antibiotics, can you cause such broad spectrum desimation. I know this paragraph doesn't address all the variables but I want a broad stroke here because it's in the broad stroke that I see the symmetry. That only in something as primitive as feces can you address so many of the issues surrounding C-Diff at once. I'm not saying it addresses everything but wow.

[feelinghopeful]

Roy,

I cannot imagine the frustration, anger and sadness you've had to deal with. I love my parents so much (they are seriously flawed but are very loving and good people) that I might be in jail right now were I you. I'm so sorry. When fecal transplants are finally accepted, "I told you so" will not begin to compensate for the losses of so many.

The general medical community did finally come around to accepting the maggot - that it only eats dead tissue and a surgeon's scalpal cannot begin to compare with this level of precision. Maybe medicine is resistant to relinguishing its exclusivity, sanitized mystique and prestige (control) by being reduced to something as bararic as the administration of maggots and feces. Not to diminish the very real need for physicians (and not to say there aren't very many terrific physicians because I've had some). But when the protection of personal gains, self-image and self-importance (arrogance) overwhelms objectivity and humanity - where does the person on the other side of this equation fit in. What frightens me is that a doctor can actually withhold a potentially life saving or life altering treatment because they don't like it, out of ignorance, on a whim or because you can't pay for it - and you cannot get through to them if they simply refuse to listen to you. And on top of that, they're perpetually in fear of being sued. I understand that there's a glut of life. Objectively, a single life isn't all that valuable and if doctors personalized every patient's situation they might be incapable of performing. From the perspective of the individual, though, things look mighty different. This is a strained setup. I could just as easily still be on Vancocin or dead with very minor tweaking of circumstances. I'm sorry you couldn't find a way to get through to your mother's doctor. My mind short circuits just thinking about it.

I'm not sure if I wrote this or not but I went to the doctor with my husband (I don't live with him). I'd done some research and found very critical and reliable information. He took the paper, looked at it and threw it back at me - literally - saying, "this means nothing to me".

FH

[fire7163]

That's when you remind them that they work for you and can be fired. The Doctor that is so egotistical that they won't look at a source of new info is not someone that I would continue to see. It might be hazardous to one of our health. I would ask him to humor you and read it. If he want's to pitch it after you walk out ...fine.

Fire