Guest guest Posted September 28, 2000 Report Share Posted September 28, 2000 Thanks for the imput! Have not been active on the board lately but happened to pull this archive up. Ruth, thanks for your courage and expertise in addressing this issue. Ken, I must admit a year ago I was quite hesitant in accepting the " sticky blood " theory as I immediately thought " DIC " Just want to say, however, I've kept an open mind and see the research on this quite solid and I thank you for your perseverance on this issue. From a medical perspective it didn't make sense, as has been pointed out that the medical community thinks " acute " DIC. This diagnosis is an extremely grave situation. Respectively, as in cardiomyopathy, the medical community also knows this situation as an acute onset, bacterial in nature which is deadly. As CFIDS research has shown, chronic viral cardiomyopathy does exists. Now if you were to use this diagnosis while speaking to a cardiologist they would think you were on drugs as it's unheard of and of course people just plain die quickly from cardiomyopathy. That's because in cardiology, cardiomyopathy simply means " acute bacterial cardiomyopathy " and that means rapid deterioration, leading to death. So, what's happening here is that CFIDS researchers are finding more innocuous forms, or should I say, of a chronic nature of illness. The medical community has never heard of these diagnosis of a chronic nature. It raises eyebrows and rolling of the eyes because researchers are addressing the findings based on chronicity, a perspective the medical community has never addressed. Also, medical conditions that are not immediately life threatening are usually heavily scrutinized. It's the guilty until proven innocent sort of mentality, unfortunately. I am also guilty of that. Guess it takes getting sick, experiencing it to be convinced. I'm sure, Ken, you could make some good computer analogy, yes? By the way, I have extended Ampligen to the 511 study. Had a terrific and active 6 week vacation off the drug from the 516 trial. Now back on drug for 5 weeks and having great results. Will go into detail at a later time. For now, I am ecstatic! and best wishes to all. >>Ken, You are right that the ISAC Panel exposes " Chronic, low-grade DIC. " But that is not the same DIC the world medical community knows. They deal with an ACUTE kind of DIC and when polled, most have never heard of DIC occuring outside of a hospital MICU setting. Hemex's form of DIC is newly discovered by Berg and his compatriots!!! and unheard of or to be put another way -- unproven to the Hematological Community. I believe Berg is most concerned with fibrin, it's buildup and the consequences as a longterm problem. Yes, testing is in progress at Hemex, Berg gives lectures, the protocol is being refined -- but while all this is currently being done, it is being done solely by HEMEX. To date no other lab has verified HEMEX's findings. Therefore, the medical community (the supposed experts I speak of here, not the lowly Family Practioners who's egos are not involved) will not accept this " chronic " form of DIC because their tests do not sensitive enough to register it.... therefore it may be an interesting hypothosis, but there is nothing to prove it exists. I guess I'm being a little picky here, and I do apologise for beating this horse, but I find it very important for this list to understand that the Hemex Protocol, even though it makes the greatest sense and is working well and I use it as are others, is generally not accepted out there. IT'S EXPERIMENTAL!!! We are the guinea pigs. If and when I ever find a hemotologist who prescribes heparin for me under the Hemex Protocol I will shout the news across the net. Until then, I will seek out my own family physician as long as the rejection rate reigns and I just want everyone to know that's the area we are in so that if they meet resistance they will expect it and know why. Thanks, Ruth<< Quote Link to comment Share on other sites More sharing options...
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