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Post by LymeEnigma on Oct 13, 2007 9:09:06 GMT -8
Thanks for the recommendation. I'm definitely going to add it to my list.
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Post by itsybitsyone on Oct 15, 2007 10:33:04 GMT -8
I am as well. Going to try to read the book, that is.
Here's the thing....we weren't there. Some of these studies confuse me about what was done. I am sure Polly's book is good, and she remembered quite well what happened, but it's only one Lymie's recollection. Goodness knows I don't remember what I took and when for a lot of things when I was younger. Granted, she semed to have a better than average documenting ability. I'm not questioning her character, just placing against the hard evidence.
One study was of kids not treated at all (gross)...a BUNCH of them.
One article mentioned 4 people who were treated.
The other article mentioned 8. Didn't mention if those 8 contained the previous 4.
So, between the articles and the studies from that time, I only see hard proof of 8 to 12 people being treated before the 1980 adult study. At least one was treated with e-mycin.
So, lets say they did treat a group as Polly and the lady you met say they did. That is definately within the realm of possibility.
WHY wouldn't they ever document it?
To what end?
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Post by itsybitsyone on Oct 15, 2007 12:44:06 GMT -8
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Post by LymeEnigma on Oct 15, 2007 15:57:46 GMT -8
I think they've all touched but the tip of the iceberg regarding the whole truth to how this disease works ... and yet none of them is willing to admit just how in the dark they all still are. I think these doctors need to start thinking outside the box ... to say nothing of their egos.
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jeezld
Established Member
Posts: 64
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Post by jeezld on Oct 15, 2007 16:59:20 GMT -8
So, lets say they did treat a group as Polly and the lady you met say they did. That is definately within the realm of possibility. WHY wouldn't they ever document it? To what end? I don't think that just because the original scientific papers from the late 1970's are too old to have been archived online for us to easily Google means it wasn't ever documented. In fact there are several documented references to the conclusions reached by Steere on the effectiveness of antibiotics and the use of antibiotic trials in Steere/Yale research team's earliest published papers in the links I posted. The book "Bulls-Eye: Unraveling the Mystery of Lyme Disease" also specifically references these earliest trails and it is published by Yale University Press, of the same institution that housed Steere's studies and research team. This being aside from Polly Murray's own account detailed from volumes of journal notes and the woman I met that also stated that antibiotic trials were a part of the original studies prior to 1980. Personally I believe that as unreliable as individual memory can be, having your crippling "unknown" disease studied at Yale by a team of doctors and receiving antibiotics (or what you believe are antibiotics in the case of a placebo) would tend to stand out in one's memory pretty significantly. If true, why would the earliest antibiotic trials have been conveniently forgotten or downplayed by the Yale folks? Here's my thoughts on a possible explanation as to why: Because they blew it! Their initial results/conclusions that antibiotics are ineffective make embarrassingly little sense once the Bb bacteria was finally identified as the culprit. For the first several years Steere believed that the illness was viral. European evidence showed that antibiotics worked and some doctors here, like Dr. Jones that you mention, and the Navy doctors were already successfully treating with antibiotics before Steere came along. Steere really wanted to believe he had a new self-limiting RA illness caused by a virus (of course he ignored other symptoms and even people who had the EM but didn't develop joint pain). An RA cluster that seemed to be spreading in the community had not been seen before and as a RA specialist this really rocked his world! Additionally, and somewhat in their defense, most bacteria is large enough to be seen in biopsies and the Yale researchers couldn't find any bacteria, never mind the elusive bacterial Bb spirochetes that wouldn't be found until 5 years after his first paper was published. Steere entered his research and studies with preconceived notions. He unscientifically forced a square peg into the round hole he wanted it to fit by picking and choosing and whittling away at the evidence until it did fit. In the name of good science he tried antibiotics but because he was convinced he was dealing with a virus he determined that antibiotics were ineffective in those earliest years. Besides he also felt it was a self-limiting disease that would resolve on its own anyway. Oops! They were soon proved to be wrong and the antibiotics was a biggie, so why keep bringing it up? Just a guess on my part.
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Post by itsybitsyone on Oct 23, 2007 9:25:39 GMT -8
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jeezld
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Posts: 64
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Post by jeezld on Oct 23, 2007 10:16:39 GMT -8
Well, I wasn't one to beat a dead horse BUT:
"The Widening Circle," Chapter 18, pages 264-5
"In the beginning of the research into "Lyme Arthritis" by the doctors at Yale University in 1975-1979, there was debate over whether antibiotics were helpful. Antibiotics were tried but were not found to be clearly helpful. ...The researchers gave antibiotics to patients with active erythema chronicum migrans during the summers of 1977 and 1979. When comparing the results of the first two years, 1976 and 1977, they did not see any difference between the untreated and the antibiotic-treated groups in the duration of the rash or the development of later symptoms. In 1978, Yale patients were again not treated with antibiotics; however, the patients in this group seemed to develop arthritis at a significant rate, so after combining the data on the three years, 1976, 1977, and 1978, the Yale group decided to use antibiotics to treat patients with active ECM again in 1979. With respect to the development of neurological symptoms and cardiac problems, the treated and untreated groups were found to be similar. The research concluded: "In our experience, neurologic involvement may develop even if penicillin is given early in the course of erythema chronicum migrans .... We believe that the later manifestations of Lyme disease - neurologic, cardiac, and joint - are immune mediated." 3
3. Allen Steere et al., "Antibiotic Therapy in Lyme Disease," Annals of Internal Medicine, vol. 93 (1980), pp 1-8
This same info concerning the early antibiotic trials is again presented in "Bulls-Eye: Unraveling the Medical Mystery of Lyme Disease" by Dr. Jonathan A. Edlow, Yale University Press, Page 110.
All I will agree with is that in the abstracts the word "antibiotics" was not mentioned. Conversely, it didn't say in the abstracts that antibiotics were NOT tested either! An abstract is just that -- an abstract -- it doesn't contain all the information and details that would be found in the entire study results. Also missing from these abstracts is mention of ANY therapies including the typical RA treatments of nonsteroidal anti-inflammatory drugs, draining fluid from the joints, corticosteroid injections, asprin, hydroxychloroquine, etc.
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Post by itsybitsyone on Oct 23, 2007 12:04:42 GMT -8
Oh I know. I was just tickled with myself for following a trail that actually brought me to the abstracts is all.
A little horn tooting...lol
I am of the belief that they may have treated some of these people...but I still have fun with this...and I think (not really beating a dead anything) that we sure have come up with some great historical links and historical information.
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jeezld
Established Member
Posts: 64
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Post by jeezld on Oct 23, 2007 12:42:32 GMT -8
Itsybitsyone, You are a most worthy debate opponent. I have enjoyed it too. Can't you just tell how much I hate to be wrong?! Here's how much (it is embarrassing but this info might be useful to someone): I actually looked into the average turn around time for a peer reviewed article to be received, accepted, go through the review process and get published. Its 6-12 months. The paper on "Antibiotic Therapy in Lyme Disease," Annals of Internal Medicine was published sometime in 1980. They began being a peer reviewed publication in 1960 (However they didn't use Structured Abstracts until 1987). I tried to find the month in 1980 that this paper on antibiotic therapy came out but came up empty. My thinking in all this is that in order to write such a paper they would need actual trials, need to study and analyze the collected data, and then write the paper for submission. So these antibiotic trails had to have taken place in the late 1970's for all of this to lead up to the 1980 published paper. Thanks for making my day go by faster. I love research -- and being right!
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Post by LymeEnigma on Oct 24, 2007 8:13:57 GMT -8
I'm really grateful to have the two of you on the same battle front. I didn't know there were others out there who treasured "fact" as much as I do (except haku). :-)
I wonder if there might be a way to get a hold of a handful of these OLD Lyme patients, ourselves, for a little Q and A...?
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Post by enochroot on Oct 24, 2007 13:14:01 GMT -8
As Rush Lamebrain sez "who needs facts when you have ideology?"
Picking up a lot from you all - many thanks!
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Post by LymeEnigma on Oct 25, 2007 6:32:59 GMT -8
Glad to have you here!
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