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View Diary: Lyme: How I told the doctor what to do (226 comments)

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  •  That's not the definition I'm using. (1+ / 0-)
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    leema

    Immune epiphenomena are the many incidental effects of an over-activated immune system that cascade downstream from a true infection.

    This includes things like rashes in people with bacterial infections that are responding to antibiotics precipitated by the intense immune response to liberated bacterial antigens, or pure immune-mediated epiphenomena like Rheumatic fever, in which the immune system mistakenly goes after your own heart tissue in the aftermath of a streptococcal infection.

    You're attributing to me a dismissive attitude I do not hold.

    •  I hear you, Ralphdog (1+ / 0-)
      Recommended by:
      MsGrin

      I hope that you will take a moment to address my earlier response to your comment, and perhaps get me to see things as you understand them.

      How do you differentiate between immune epiphenomena and the effects of an ongoing infection if the causative agent cannot be detected by culture or blood tests?

      Are there particular biomarkers you use to make the distinction, or can you have both going on at the same time?

      •  As you know, the tests for Lyme frankly suck. (1+ / 0-)
        Recommended by:
        Camp Other

        My reading of the data is different from yours. I find the theory of ongoing infection very unpersuasive in the case of Lyme. The vast preponderance of data simply doesn't support it. The organism is very sensitive to most antibiotics, and evidence for ongoing infection after treatment is unconvincing. Borrelia has in common with the Syphillis treponema extreme sensitivity to antibiotics and virtually no evident acquisition of resistance. One or two murine studies do not outweigh the preponderance of evidence in this respect.

        I understand that you can find a few studies here and there suggesting chronic infection is reality. There are always a few outlier studies and theories, but do they stand the test of time and are they reproducible by other investigators? I absolutely understand how eager patients with chronic problems are to have an answer and solutions for their torment. But a handful of studies that are refuted by the much larger body of research in Lyme are not persuasive to me. Again, I maintain an open mind with respect to each patient, and I keep reading to see what's developing in the field. So far I must remain a skeptic about the possibility of chronic Lyme based on the strength of the evidence.

        •  true ...current tests suck (0+ / 0-)

          And as a bonafide skeptic...I cannot accept "evidence" that is not based on what I perceive to be good science.    

          And given the sucking tests....I posit that almost any definitive conclusions derived from most studies based on said tests, are lacking in credible science.    

          Thus I don't think it is a matter of citation numbers ...that we should be looking for here...but good science...and in this case ...basic science.  

          I have found that the microbiological studies that show the ability of the spirochete to change not onlyexpression of OSPs in various environs, but also to change to a non replicating form in inhospitable conditions to be more significant than a slew of human studies based on sucking tests.  

          Then too:   Bb is a more complicated spirochete than that of syphilis from all I have read.  

           

          "I think it is much more interesting to live not knowing than to have answers that might be wrong." Richard Feynman

          by leema on Sat May 21, 2011 at 09:55:18 AM PDT

          [ Parent ]

        •  Some more questions for you (0+ / 0-)

          I hear that you read the data differently - maybe you are reading different data, though? What do you advise me to read so that I can see what you are seeing?

          In my ongoing research, it seems that there used to be more mention of a chronic infection model as a possibility for persisting symptoms - but at some point that shifted to the model which is predominantly autoimmune. Do you know what the tipping point was - the milestone moment in that shift? Or if not milestones, what key studies I should look at which outline the shift?

          You said, "There are always a few outlier studies and theories, but do they stand the test of time and are they reproducible by other investigators?"

          Well, if you're talking about Barthold and Hodzic's 2 recent murine studies and the Finn's recent study, then you would be right in saying that is not enough on which to base any broader policy of treatment - but someone has yet to undertake replicating them. I agree they need to be independently verified and validated. That said, do any earlier animal studies (such as rhesus studies on neuroborreliosis) and human case studies hold any evidence that the organism does persist and cause infection? What about Straubingers studies?

          One has to try to faithfully reproduce the studies in order to support or refute a claim. If a reproduction of these studies have not been done at all, how can one be certain of their findings either way? If their methods were deemed invalid, then they can't be deemed valid findings to begin with - but then I would think conducting another study with the proper methods would be a good idea. (And also, perhaps methods themselves need evaluation in some cases.)

          "I absolutely understand how eager patients with chronic problems are to have an answer and solutions for their torment."

          I am, and I could accept the answer of "I don't know" in response to my condition label at this point. All I know is I want more research done to lead to treatment that will help return more quality of life for me and other patients. Sadly, a number of us are not getting the response of "I don't know", even, along with an attempt at ways of helping us feel better. We're getting labeled with depression, anxiety, and worse. I'm not anxious and depressed most of the time. Disappointed? Angry? Yes. Mostly, though, I'm in pain and want it to stop, and pain meds steal what brain I do have. It's hard to live this way, to decide between being able to respond to you here or feel less pain and be totally zoned out.

          "Again, I maintain an open mind with respect to each patient, and I keep reading to see what's developing in the field. So far I must remain a skeptic about the possibility of chronic Lyme based on the strength of the evidence."

          I appreciate that you want to maintain an open mind and look at patients individually. I also want to thank you for discussing this with me despite having differing viewpoints. Some patients might automatically take a negative view of your skepticism because we have been treated dismissively by some doctors - I acknowledge that can be an issue in trying to discuss chronic Lyme disease. I may disagree with you so far, but I want to know what you think and perhaps learn something I didn't know before.

    •  I appreciate the clarification (0+ / 0-)

      thank you.

      'Give away to the rich and punish the poor for the extravagance.....crazy' --LaFeminista

      by MsGrin on Sat May 21, 2011 at 04:49:20 AM PDT

      [ Parent ]

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