Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 > She admitted that other people have claimed to find evidence of > infection, and suggested that there could be multiple causes for > myositis and those causes could " cluster " geographically. Dr. Ann , formerly at U of North Carolina and now at Mayo Clinic in Minnesota, was studying the distribution of JDMS cases in NC. They had a historical list of where each case had taken place, and were overlaying variousenvironmental and industrial data over that to see if there was any correlation. There were several clusters of disease that were not explained by the general population distribution. She talked about this study at the MAA Conference last year, and said that the results would be release some time this year. I have heard nothing further since then. Ralph ========================================================== Ralph Becker http://www.ralphb.net/ Will Juggle for Food. RKBA! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Hi , I don't know all of the scientific details, but remember reading in The New Arthritis Breakthrough that it was indeed hard to isolate any infectious organisms. Now that PCR testing for mycoplasma is available, scientists are finding that the infection is at least a co-factor in these diseases. There is info at www.immed.org that explains the process. Still, it is a muddy issue, and we're being advised and pulled from all sides. Based on my own experiences and those of others with myositis whom I have been in contact with, I feel that there is definitely merit in pursuing this option for me. , I really feel for you and your family.....having to deal with tests and procedures for Mattie. One good thing is the resiliency of children. They are remarkable in that aspect. Please give Mattie a hug from me. take care, Connie Infection > > > Just to add information to the infection discussion, I asked Dr. Eberhard > at Boston Childrens about an infectious basis for myositis and she told me > she was involved with such a study in Canada. They did numerous muscle > biopsies over a period of time for the express purpose of finding > abnormalities that would indicate infection. However, she said they never > found anything encouraging. > > She admitted that other people have claimed to find evidence of infection, > and suggested that there could be multiple causes for myositis and those > causes could " cluster " geographically. > > I just thought I would pass that along FYI. > > - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Ralph, I have read about this study and have been looking for the results. If you happen to come across them please let me know. We are especially interested as was born in Charlotte, NC. Thanks, Cari --- Ralph Becker wrote: > > > > She admitted that other people have claimed to > find evidence of > > infection, and suggested that there could be > multiple causes for > > myositis and those causes could " cluster " > geographically. > > Dr. Ann , formerly at U of North Carolina and > now at Mayo Clinic in > Minnesota, was studying the distribution of JDMS > cases in NC. They had > a historical list of where each case had taken > place, and were > overlaying variousenvironmental and industrial data > over that to see if > there was any correlation. There were several > clusters of disease that > were not explained by the general population > distribution. > > She talked about this study at the MAA Conference > last year, and said > that the results would be release some time this > year. I have heard > nothing further since then. > > Ralph > ========================================================== > Ralph Becker > http://www.ralphb.net/ > Will Juggle for Food. RKBA! > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Hi Connie, I appreciate your input! I'll definitely look up that link. I want to make it clear, by the way, that I am not trying to tell anyone what course of action they ought to take in their treatment. That's between a person and his or her doctor. I am not a doctor. I'll also add that I am a skeptic in general and have fairly rigorous personal standards. But I respect the beliefs of others, and welcome their information and opinions. I make it a point to write this simply because sometimes people mistake contrary information and skepticism for an attack. You may have different criteria than I do for making a decision. Whatever your criteria, I believe that more information is better--even if it contradicts previous beliefs. >I don't know all of the scientific details, but remember reading in The New >Arthritis Breakthrough that it was indeed hard to isolate any infectious >organisms. Now that PCR testing for mycoplasma is available, scientists are >finding that the infection is at least a co-factor in these diseases. It is probably difficult to make generalizations across diseases, thought there are undoubtedly similarities. The rarity of myositis doesn't help. What Dr. E was trying to tell me was that there may be places where myositis is caused/triggered by some infection, but in another part of the world there may be no infection at all causing the illness. Such uncertainty is the nature of this process. I'm glad that you are finding treatment that satisfies you and I (of course) hope you see the best possible results. Obviously, that would be wonderful for everyone. Cheers and good health, - -- J. P. Burke .... drmomentum@... Epinions profile: <http://drmomentum.epinions.com/user-drmomentum> " Rest in reason. Move in passion. " - Kahlil Gibran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Hi , I certainly understand that you are not trying to tell anyone what course of action they should take. And I agree with your skepticism........I had bunches of it as I was investigating the antibiotic protocol! The more I researched the more convinced I became. I'm just here to offer my experiences with something that is working for me and for others. Everyone has to judge for themselves which path to travel. You're right, more information is better. We can offer each other support and share information and experiences along the way. take care, Connie Re: Infection > Hi Connie, > > I appreciate your input! I'll definitely look up that link. > > I want to make it clear, by the way, that I am not trying to tell > anyone what course of action they ought to take in their treatment. > That's between a person and his or her doctor. I am not a doctor. > > I'll also add that I am a skeptic in general and have fairly rigorous > personal standards. But I respect the beliefs of others, and welcome > their information and opinions. > > I make it a point to write this simply because sometimes people > mistake contrary information and skepticism for an attack. You may > have different criteria than I do for making a decision. Whatever > your criteria, I believe that more information is better--even if it > contradicts previous beliefs. > > >I don't know all of the scientific details, but remember reading in The New > >Arthritis Breakthrough that it was indeed hard to isolate any infectious > >organisms. Now that PCR testing for mycoplasma is available, scientists are > >finding that the infection is at least a co-factor in these diseases. > > It is probably difficult to make generalizations across diseases, > thought there are undoubtedly similarities. The rarity of myositis > doesn't help. What Dr. E was trying to tell me was that there may be > places where myositis is caused/triggered by some infection, but in > another part of the world there may be no infection at all causing > the illness. Such uncertainty is the nature of this process. > > I'm glad that you are finding treatment that satisfies you and I (of > course) hope you see the best possible results. Obviously, that would > be wonderful for everyone. > > Cheers and good health, > - > -- > J. P. Burke .... drmomentum@... > Epinions profile: <http://drmomentum.epinions.com/user-drmomentum> > " Rest in reason. Move in passion. " - Kahlil Gibran > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Actually this doctor was not up to date in her information. The thought is that we carry infection in our blood stream that may or may not be found in the muscle, but the infection can cause the destructive inflammation that we have. Gentle hugs, Fern-dm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 I have heard this explanation, too, Fern. Thanks for the reminder. Hope you are doing better. Connie Re: Infection > > Actually this doctor was not up to date in her information. The thought is > that we carry infection in our blood stream that may or may not be found in > the muscle, but the infection can cause the destructive inflammation that we > have. > > Gentle hugs, > Fern-dm > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 I wouldn't feel right to have people questioning Dr. Eberhard's grasp of current rheumatology based on the my limited limited ability to represent our conversation. To be fair (since she is not here to speak for herself) I have to point out that she was telling me about a specific study she was involved with, and giving me her medical opinion based on personal experience. She was not disputing that an infectious cause could exist, and in fact allowed for geographical variation. I found her fair-mindedness encouraging. Cheers, - Starflower produced the following text on 2000/09/13 at 12:19 AM: > Actually this doctor was not up to date in her > information. The thought is that we carry infection in > our blood stream that may or may not be found in the > muscle, but the infection can cause the destructive > inflammation that we have. > > Gentle hugs, Fern-dm > > Quote Link to comment Share on other sites More sharing options...
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