I realized in reviewing all the comments I've seen to date that some people are thinking along similar lines as I am. But anyway, here's my proposal:
I would like to see the IDSA publish a paper which characterizes all the data on those patients who have stated they have been diagnosed with chronic Lyme disease and/or Post-Lyme Disease Syndrome. What are the similarities both in terms of empirical testing (not just ELISA C6 and WB, but immunological as well), history, presence of coinfections, genetic profiles, preexisting conditions, and symptom presentation in this patient group? It'd be good to see aggregation and see if there are specific subgroups of all these patients - rather than just see and know about patients who met CDC surveillance criteria who could participate in clinical trials. Those who are living with CLD/PLDS may not be those who end up participating in clinical trials. Let's see a characterization of the data first, much like what the Norwegians did this past summer in an NIH study, "The Phenomenon of "Chronic Lyme"; an Observational Study"(of which I am still waiting for the results).
I would like to see the IDSA publish a detailed web site which explains their own hypothesis or hypotheses for autoimmunity giving rise to persisting symptoms after antibiotic treatment for Lyme disease. There is little detailed information available online all in one place on how autoimmunity hypotheses came to be adopted after persisting infection models were considered - even though there are plenty of research papers where the purpose was to determine any autoimmune factors in infection. The information is not laid out in one logical coherent piece displaying all the building blocks of findings for others to see. If the IDSA thinks they have a strong argument in favor of autoimmunity and many people fail to agree with it, it seems to me they have failed to support it.
I would like to see the IDSA also include on that web site what the evidence is for persistent infection after antibiotic treatment, and a detailed explanation on why they think an infection cannot persist beyond 2-3 weeks of antibiotic treatment in any patient, and a list of criteria which would need to be met in order to determine that Borrelia does and can persist in its host. (Something specific about #2 on this page, and more detailed.)
I would like to see an extension of the proteomics research which distinguished the CSF proteins of Chronic Lyme Disease/Post-Lyme patients from the CSF proteins of CFS/ME patients. In particular, see a comparison between acute Lyme disease, late stage Lyme disease, and chronic Lyme disease protein distributions. Are they the same? Are they different? Can we use this knowledge to learn more about disease progression?
I would like to see some more research done on how different genospecies of Borrelia register on different serological tests for Lyme disease. It might not even be fair to continue using tests for "Lyme disease" - what might be a more accurate test panel would be one for Borreliosis, which covers all Borrelia including relapsing fever Borrelia and forms of Borrelia which do not always present with the tell-tale EM rash (hardly tell-tale under those circumstances). I'd also like to see related research on how repeat panel testing catches more disseminated infection which was not caught earlier. (The issue here being that early suspicion of disease must be present - ethically if you suspect and do not treat, this creates problems when one is found serologically positive.)
I would like to see some more research done on how different antibiotics affect different kinds of Borrelia. The fact that some patients do experience treatment failure even in early Lyme disease - up to 10% of all acute patients - may be due to the efficacy of their initial treatment. Refer to this:
"In Vitro Susceptibility Testing of Four Antibiotics against Borrelia burgdorferi: a Comparison of Results for the Three Genospecies Borrelia afzelii, Borrelia garinii, and Borrelia burgdorferi Sensu Stricto."Most of all, I would like to see the IDSA have a heart, and for dismissive opinions such as "In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection," to not be included in official professional medical guidelines for the treatment of Lyme disease. Any opinion such as this must be rigorously backed by fact and not by comparison to the population at large. Any condition which involves pain as a symptom could be compared to pain in the population at large. This should not distract one from the fact that certain medical conditions involve pain as a symptom. The controversy in Lyme disease may not end any time soon, but if patients were taken at their word for describing the serious limitations and degree of pain that they experience on a daily basis, that would go a long way towards a first step at healing the anger so many of us have.
"In 7 out of 12 comparative evaluations (P > 0.05), MBCs were significantly different among the three genospecies. B. garinii seemed to be especially susceptible to azithromycin, while amoxicillin had a significantly greater effect on B. burgdorferi sensu stricto compared to the other genospecies. Ceftriaxone had the lowest MBC with B. afzelii and increasingly higher MBCs with B. garinii and B. burgdorferi sensu stricto. Doxycycline did not show any remarkable differences in its effects on the three genospecies."
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