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Dear Walt,
Since I have been "diagnosed" with CFIDS (CFS, recurring ebv...), I have been doing extensive research on the internet whenever I can. I have been on and off of this site for over 1 1/2 yrs. Recently I have come across some very technical information on a drug called Ampligen. I did a search on this site and came up empty handed. Ampligen is available in Canada, but is very expensive ($20,000-40,000per year!!!). Ampligen, from what I understand helps correct a type of "down-regulation" in the hypothalmus, which is a cause of immune system dysfunction, or more accurately as the articles stated, hypersensitivity. It seems as if some people are genetically suseptable to this type of dysregulation. Aside from people completely rehabilitating from recurring EBV, apparently it also helps many with HIV prolong their ability to avoid full blown AIDS. As all of us on this site know, if the US were to release a drug that may infact "cure" people, doctor's would have less patients. Also, there is a strong link between EBV and cancer, as you know in re: Burkitt's Lymphoma. For some reason, in some people, EBV causes big problems, while in others it causes little. Their theory is something along the lines of a genetic mutation of the EBV virus itself, that occurs in certain people who are more genetically suseptable. They are finding mutated EBV within Breast Cancer cells at an alarming rate. Ampligen apparently acts on specific receptors, and within cells itself, and prevents EBV itself from taking over, something to do with B-lymphocytes. I would like to post some of the info that I have found on Ampligen, like I said it is really technical, I am hoping that you can help me put it into terms that we can all understand. I would also like to know what info you have on it, and what your thoughts are. I personally do not believe that drugs are the cure, as most doctor's would like us to believe, thus keeping the drug industry booming, but once a long time ago there was the discovery of penicillan, once in a while there is a "good drug" , that if taken properly, will in fact CURE!!!
Although it is our responsibility to keep ourselves as healthy as possible to avoid illness, until recently the majority of us had NO IDEA how unhealthy our day to day foods and environment are, and to this day, the AMA and FDA would rather we never know. I think they are onto something here with Ampligen, several other countries believe so as well, it is even manufactured here in the US, though not available to it's citizens, unlike refined sugar, and prozac...Anything you can share is greatly appreciated. I will attempt to post the articles from the medical journals as soon as I figure out how to do it. Thanks!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Celena
In Reply to: Ampligen, EBV, and hypothalmic "down-regulation" Walt have you heard of this??? posted by Celena on May 16, 2001 at 04:18:39:
Hmmm... at first, you say that you don't believe that drugs are cure, but then you say that some drugs can be one. Not picking on Ampligen as I know nothing about it, what exactly do you believe? Just interesting to know.
You also seem to imply that penicillin was a cure. I think it depends on a definition of a disease. If disease is a currently active infection, then penicillin can really be a cure. However, if disease is defined as a one's state that allows infection to develop, then penicillin is not a cure. And the infection, or the "pathogens" that are associated with it, are just symptoms of the disease. I have a reason to believe, to some degree, that what we call pathogens that "cause" disease are the merely "cleaners" or, as it sometimes seems, destroyers of a diseased or dying organism. I am not decided on this and like to ponder this.
In Reply to: Re: Ampligen, EBV, and hypothalmic "down-regulation" Walt have you heard of this??? posted by R. on May 16, 2001 at 14:39:26:
Dear R,
First of all, my post was an inquiry, to anyone who may be familiar with Ampligen. When I stated that I did not believe that drugs were always the answer, I was referring to the pill popping society that the AMA, and FDA has turned many into. I thought that my point went without further explanation, but I was wrong. So I will kindly explain my PERSONAL philosophy. I personally believe that there are some, though few, drugs that actually cure, or get rid of disease, help to reregulate one's system, lead them back down a better path to get healthy. In this time, and our world, not matter how well you or anyone else practices a wellnes regimen, there are times when you will get sick, be it a virus, bacteria, bowel obstruction, broken leg, stroke, you name it, we do not live in a bubble. Just like crossing the street, there is always risk, even if you always look both ways TWICE!!! Ampligen is a drug that affects RnaseL enzyme dysregulation. It down-regulates some enzyme pathways, while upregulating others. It has been proven that a large group of people with CFS have a low molecular RnaseL weight, and they also have antipolymer antibodies. I am on a wellness schedule/regimen, that is why I am on this site, however, I have not returned to my full capacity health wise, if you have heard of CFS (CFIDS, ME, REDD, FM, &so on, it's the same disease), then you know that it had been thought to be psychosomatic in many ways. A healthy diet has definately made improvements, along with high doses of ester-c, and several other natural supplements (by the way, supplements are also drugs if you wish to be technical, whether in an herbal tea or pill...), and stress reduction has helped, but now there is a definative test for people suffering from CFS, RnaseL molecular weight testing. There have also been markers specific to Fibromyalgia (read The Lancet, or the Feb 1999 issue of The Journal of Rheumatology). Ampligen is made in Philadelphia, Pa., it is sold in Canada, Belgium, and other places as well, but not here. I am trying to find out if anyone on this BB knows anything about it. I have done extensive research myself. Before I was partially disabled by CFS, which is now known to be RnaseL Dysfunction Disease, I was a Pharmacy Major, Behavioral Neuroscience Minor. Now I am not capable to complete. Through my major, I have seen both positive and negative effects of drugs, and also I have learned how behaviors can release enzymes just like drugs that our own bodies can become addicted to, though that may sound crazy to you, I'll give you the easiest example I can think of...Pavlov's Dog... Anyway, since becoming ill, and searching for a good doctor, I came across this BB. When I am well enough I intend to finish school, though not as a pharmacy major, but as a Neuroscience major. I have become all too aware of the BS associated with the FDA, and the AMA. I wish to work in a field where I can make a difference, by doing research, which is really putting life's puzzle pieces together, so who knows, I may be the one to find the pieces to the answer you were looking for on this very BB, because of course, like me, you are here trying to seek knowledge, probably for an illness that you are trying to kick out of your system, like Walt says, do your homework 1st(i.e.:research), ask questions 2nd. So I asked my question. Now I am wondering if I answered yours?! It seems to me that you are still seeking answers in regards to your philosophy of life, and your wellness schedule. If your personal questions are causing stress to you, put them down for awhile, they will either still be there later, or they will work themselves out in their own way. There is an old saying, and it works, having to do with perspective: If you cannot change a situation, change the way you think about it. ~~~~~~~~~~~~Celena
In Reply to: Re: Ampligen, EBV, and hypothalmic "down-regulation" Walt have you heard of this??? posted by R. on May 16, 2001 at 14:39:26:
Celena,
yahoogroups has got a list that's called 'CFS Ampligen' or something like that. There's not much posting there, but maybe you could ask question on it. I've also got CFIDS. Here in Europe you need to do a test before you can get into an Ampligen trial. The test is called Rnase-L. I think the drug is still in its trial phase everywhere. I've heard positive and negative stories about Ampligen. Unfortunately I don't know how it's really supposed to work.
Good luck to you and hope you feel better,
Bini l.trotzky@gmx.net
In Reply to: Re: Ampligen, EBV, and hypothalmic posted by Celena on May 17, 2001 at 05:05:34:
Sorry Celena,
you already know about Rnase-L. I didn't see your last post. But still.. maybe this Ampligen list can help you answer questions. I wanted to look into Ampligen, too, but somehow stopped and went a different direction. In case I get much worse, I'd still consider taking it though. For now I'm taking enzymes and trying to get closer to a wellness lifestyle.
Presently I don't want to touch strong drugs but I'm still interested in whatever is going on with new drugs for CFS and maybe one day I get so bad again that I don't mind taking them OR it turns out that Ampligen is really helpful with a minimum of side effects. For now I doubt it is.
I'm also interested in Walt's answer to this.
Best wishes,
Bini
PS: Keep in touch if you want l.trotzky@gmx.net
PPS: I had to interrupt/stop (?) my studies as well.
In Reply to: Re: Ampligen, EBV, and hypothalmic "down-regulation" Walt have you heard of this??? in response to R?! posted by Celena on May 17, 2001 at 05:05:34:
Yes, you answered my question. Thank you.
In Reply to: Re: Ampligen, EBV, and hypothalmic "down-regulation" Walt have you heard of this??? posted by Bini on May 17, 2001 at 14:51:31:
Bini,
I am very appreciative to finally meet an actual person who knows of this. I would like to discuss this subject in greater detail with you. Trials in the US are few and far between, with less than 5 docs doing them in the entire country, with waiting lists a mile long, 12 months to even get a consultation, and the #'s are limited for who can get in, chosen by order of severity (most debilitated persons being 1st of course). I am at 50% function-ability right now, I am practicing wellness as best as i can in the mean time, because I fear sliding back to where I started, or worse, as you know how it goes. I am so very thankful to be at this functioning level right now, compared to before, but I want the rest back as well. Ampligen is available in Canada to the people who can afford it, it is incredibly expensive, but it is available, and that in it self gives hope, because thousands of people in the US are going there seeking treatment, and fighting to get it passed in the US. Power is in numbers, and the #s are high, so it is only a matter of time...The test for RnaseL molecular weight, and also the Antipolymer Antibody Assay tests are now available in the US, but only in 3-5 labs as far as I have learned, and the problem is getting the blood drawn, spun, frozen and shipped within 24 hours, plus the tests are expensive, not covered by medical insurance as of yet, and doctors who are not familiar with the new criteria for diagnosing this disease are hesitant to go through the trouble, so you have to go on a waiting list for a doc who is familiar. Most docs here if they have heard of CFS (now known to be RnaseL Dysfunction Disease), believe that it is just a psychosomatic disease, mainly affecting women, and they much of the time just pass you off as a hypochondriac!!! I have a doc who diagnosed me with CFS, he was 78 at the time, he tries to keep up on things as best he can, but it is difficult even for docs to get this info as fast as it is coming out. Sometimes he gets better info from my research, and that's mainly because I have the time to ferret it out and print it to show it to him. At 1st when I would go in with my info not printed out from specific medical texts and journals, he would get annoyed, now he keeps copies, and has even given me a few printed articles himself. It is getting better with him, but it was not easy. Docs tend to feel that they always know more about this kind of stuff than the patient, and most of the time this is the case, so it's hard to get them to listen, unless you're talking on "thier level" which is difficult even for me, and I was a pharm. major... I am familiar with the site you referred to. I am more interested in exchanging info with knowledgible persons like yourself who may soon be treated with ampligen, or who know others who are, or were. I understand from a technical level how ampligen works, I do not know people who have had personal experiences with it, nor have I heard from anyone I've tried to contact as to whether or not they had the RnaseL testing done. Please tell me all you can.
Sincerely,
Celena
In Reply to: Re: Ampligen, Bini please read, and also much thanks to you and this BB because i always find what I am looking for when I come back to this place!!! posted by Celena on May 17, 2001 at 20:57:20:
Hi Celena,
unfortunately I don't know much about Ampligen and definetly not as much as you do. Well, I've already done the Rnase-L test and am positive. I heard this might qualify me for an Ampligen trial. My result is however 'only' 4.5 and I've also heard this might be too low to get me into a trial.
The trials are rare here in Europe, too. I went to Belgium to have the test done. In Belgium they're in trial phase III I think. Here, in Germany they only started or are going to start soon ?!? I still need to get more info about the German trials.
Since I've been getting slightly better, I thought it might be too risky to try Ampligen now. In case I got bedridden again and have all those horrible sensations back, I would honestly try anything. I'm also so happy to be on the functional level I'm now. I heard of relapses though and would like to know what to do if it hits me hard again.
Also, it would be nice to get all energy back again. I still don't have my daily life back at all. But I can walk again and do little things and my body is not THAT confused anymore I think. At least I feel like I can survive and enjoy life, even with the huge restrictions.
On the Ampligen site which I mentioned there are actually people who've tried Ampligen. Couldn't you get in touch with them ? I'm only in touch with someone who's currently in a trial, thinks he's on the placebo though, another 'now' friend of mine has tried the stuff but got a shock and couldn't continue. Shocks (allergy) are rare but for her it was almost fatal. She might know more about Ampligen though.
Like I've mentioned, I haven't thought about Ampligen that much recently. I'm trying to work with a diet, SR, nature and stuff like that but I'm definetly interested in discussing Ampligen and anything on CFIDS. It couldn't hurt to get on an Ampligen waiting list as well. I heard it takes years to get in and you can probably always get off of the list. It would still be better to try the stuff than to commit suicide and if I get really worse again, I might feel like dying again!?!
For now, I so much feel like living though :-)
Again, if you want get in touch with me, you can at l.trotzky@gmx.net
I don't check the net/this BB on a daily level, so I might not see all your further posts.
Warmest wishes,
Bini
PS: Did you read that the Ampligen therapy was supposed to be a cure ? I heard it was and I heard it wasn't (but just helping some things that go wrong in your body)??!!
In Reply to: For Celena posted by Bini on May 18, 2001 at 00:14:21:
Bini,
Isn't Ampligen made by a Co in Phila, Pa with 3 letts in the
name ?? Can't remember them now. It has been many years
like 10 or more since I ran into them.
VF
In Reply to: Ampligen, EBV, and hypothalmic "down-regulation" Walt have you heard of this??? posted by Celena on May 16, 2001 at 04:18:39:
Hi, Celena.
Ampligen is like taking exogenous interferon: really expensive and of limited value. It is well known that the most reliable way to upregulate genes is by a serious wellness program. However, since the information cannot be bottled and sold, no one talks about it. See the homepage article for a free protocol.
Another reason is that many people would really like to just take a pill (Wouldn't we all?) Wellness takes personal commitment and work and few of us prefer that (myself included).
Reference: all of the monthly issues of Functional Medicine Update from June, 2000 through March, 2001. Call (800) 843-9660. This is a world-wide service summarizing all of the world literature in this expanding field of 21st century medicine.
Let us know what you learn.
Walt
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