Posted by Richard D. Miller Nevertheless, in addition to the common features of all acute pneumonia, each causative agent is a little different, and Legionella pneumophila is no exception. While the Legionella bacteria remain in the lungs during the disease, the bacteria produce a number of potentially toxic products that do get into the bloodstream during the infection. What effects these toxins have on the body have not been well studied. However, there is good evidence from other diseases, such as whooping cough, where the bacteria (Bordetella pertussis) remain in the respiratory tract, but bacterial toxins get in the bloodstream and cause siginificant problems in the brain and elsewhere in the body. The medical establishment is obviously most concerned with the patient recovery from the severe pneumonia, i.e. getting the appropriate antibiotic into the patient as quickly as possible, getting the patient on oxygen if necessary, etc. The medical establishment is less concerned with long-term sequelae, particularly since it is difficult to track this. The fact the some patients recover faster and with less problems than other patients makes these studies difficult. Nevertheless, if there are long-term sequelae to Legionnaires disease that could be treated in some way, it is important to find this out. Thus, acquiring information from patients, such as through the ILRS, could be an important contribution to the field. --Previous Message--
on 6/9/2004, 10:15 pm, in reply to "Re: International Legionella Rehabilitation Survey"
136.165.130.23
Legionnaires disease is clearly a very serious form of acute bacterial pneumonia. As such, it shares many similarities to other serious causes of pneumonia, such as Streptococcus pneumoniae (which is the most common cause of bacterial pneumonia), which kills hundreds of thousands of people each year. Because of the intense inflammation in the lungs during pneumonia, fluids fill the air sacs and impair oxygen transfer into the blood. Since the brain has a very high oxygen demand, it is not surprising that some degree of delerium is common with all severe pneumonia, often with slow recovery. Some long-term problems are occasionally seen in cases of severe pneumonia caused by any bacterium.
Richard D. Miller, Ph.D.
: My husband is currently in the hospital, on a
: ventilator, with the diagnosis of
: Legionnaires. This is day 14 that he is in
: ICU and it is completely overwhelming and
: distressing to me, to our family. We know so
: little about the disease and I'm searching on
: the internet as much as I can when not at his
: side at the hospital. He is a young 56 year
: old, was very healthy and athletic with no
: pre-existing condition before this struck
: him...which is still a mystery as to how and
: where. As he's been slipping in and out of
: awareness these past 2 weeks he has seemed to
: know who I was and whenever I mentioned our 5
: year daughter I could see emotion on his face
: and he would often have some tears. I'm
: particularly distressed today because,
: although he was more alert and aware than
: he's been since ICU, he did not know who I
: was or who our daughter is when I showed him
: photos....shook his head no when I asked him
: if he knew who she was. Has anyone out there
: had any experience with a legionnaires family
: member, or themselves, that completely
: forgets who their family members are? I came
: across this site in a google search and
: thought I could find some help in coping as I
: endure this dreadful situation. Kindly, Thea
: --Previous Message--
: : Yes to the confusion and short term memory
: loss. And even some long term memory loss.
: I had LD, ARDS and stroke while on
: ventilator. 4 weeks on vent in coma. It's
: been 2 and a half years and I still have
: problems with both confusion and memory loss.
: Terry
: Previous Message--
: I have a question about the effects of LD on
: short term memory & confusion. My
: husband is having some problems with both.
: The pnuemonia caused ARDS (acute respiratory
: distress syndrome) & I have read short
: term memory & confusion can result from
: ARDS & persist for awhile. Was wondering
: if anyone else experienced this problems
: after legionairres disease.
: --Previous Message--
: : I have specific questions about the affects
: of LD on vision and/or eye problems. I did
: suffer a stroke while on ventilator, and the
: stroke could have caused the vision problems,
: but my question concerns whether LD could
: have also contributed or could have caused
: lasting problems with vision and
: weakeness/tiredness of eyes.
: Thank you,
: Terry
: --Previous Message--
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: International Legionella Rehabilitation
: Survey
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: There is a very little literature or
: information
: on the subject of techniques for surviving
: and coping with Legionnaires disease and even
: less money to fund it.
: IF there is sufficient interest, I propose to
: conduct an international survey to discover
: more information about surviving this
: dreadful disease.
: I will post the results for everyone in the
: group now and future members which will
: hopefully improve your quality of life.
: Presently, Doctors all over the world don't
: have
: much data to make recommendations for their
: patients, hopefully this survey will change
: that
: situation.
: I am still formulating my ideas, so feel free
: to
: comments, express your needs or other
: requirements, etc. No real names will appear
: in
: the results, and it goes with saying all
: information will remain confidential.
: Only LD survivors know the real truth and
: have the experience. I am hoping this survey
: will discover useful hints and tips from
: various parts of the world that can be shared
: for the benefit of everyone.
: Of course, if nobody participates there will
: be
: no results. I am an engineer by trade, so I
: will buy the software, math is no problem,
: however once I have assessed the response I
: may try to encourage a university or other
: institute to help, which MAY require that
: institute reviewing copies of your medical
: records (sent at your own expense).
: Since there is no money (except mine) and my
: spare time, the survey will be emailed. It
: will take time to compile, conduct and
: report, so please don't expect results
: overnight.
: The survey will probably comprise a simple
: questionnaire asking basic questions about
: health
: before and after, medications, exercise,
: diet, etc.
: Since this is a low cost survey, I can't
: accept
: a qualified acceptance; by that I mean a
: person
: that wants to do bits of the survey.
: Qualified
: acceptances would be classed as No, I simply
: dont have the resources to handle too many
: variables.
: Please send general questions to the group
: or my private email address: deepcastle (at)
: hotmail.com
: Please, Please Please use the title:
: International Legionella Rehabilitation
: Survey (ILRS)
: Tell your doctors, tell your consultants,
: tell anyone that will listen 
: I encourage you to participate - Hoping for
: overwhelming response.
: Regards,
: John Herbert
: PS: Dont lose this chance to make a
: difference.
:
: : :
: :
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