It's only because I have these references handy that I'm posting them here. It's difficult for me to tell whether or not you are questioning the autoimmune theory of PTLDS
(aka chronic Lyme) that the CDC, NIAID and others support, so please forgive me if I misunderstood your remarks.
I'm here to tell you that I think chronic Lyme could be autoimmune.
Thanks for the information RitaA. I have access to the same. Yes, you did misunderstand, but that too is understandable.
The first document you listed is dated 2001. A lot has happened since that time. PTLDS is not a theory.
It's interesting to hear a Lyme patient who is based out of the U.S. say that "chronic Lyme" disease is not due to a persistent infection, but rather an autoimmune disease. My point is that it seems like they are agreeing with the CDC, IDSA, and NIAID, and disagreeing with the ILADS theory. This would make Lyme and PTLDS two different clinical entities, which would likely require two completely different treatment regimens. Lyme disease, being an active infection and responsive to antibiotics, and PTLDS being an autoimmune disease and thus requiring a different treatment regimen.
If you hold this opinion, then you should support the CDC, IDSA, and NIH, not threaten and 'persecute' them.
Note: My highlights (above) are in green
to distinguish them from yours (in blue).
And you, apparently, partially
misunderstood what I wrote as well. I wasn't suggesting that PTLDS is a theory. It is (as described by the CDC and IDSA) considered a medical syndrome that some people (and especially Lyme disease patients in North America) call "chronic Lyme disease". For many Europeans, chronic Lyme disease is synonymous with an untreated (or treatment-resistant), late stage borrelia infection, so the terminology can indeed be confusing.
The theory (or more correctly, hypothesis *) part comes into play only as it pertains to the possible cause(s) of symptoms that persist for six or more months, and only after two to four weeks of IDSA-recommended antibiotic treatment for Lyme disease. Some (like the NIH, CDC and IDSA) believe the cause of persistent symptoms may be primarily autoimmune. Others (like ILADS and many Lyme disease patients) believe it is a persistent infection that requires a much longer course of antibiotics, although they are willing to consider that autoimmune factors (or other types of immune dysfunction) may also
play a role.
As far as quoting from the 2001 article, that was quite deliberate on my part. It was intended to illustrate the fact that researchers still don't have definitive answers regarding the autoimmune theory of PTLDS. A highly-respected source within the Lyme disease establishment (for want of a better word) was quoted, and researchers were hoping to have "useful, and maybe even decisive" answers within a few years. It's now more than a decade later.
Within two or three years, the researchers say, they hope to have some useful, and maybe even decisive, information from this research.
Yes, the recommended treatment for active infections versus post-infectious, autoimmune disorders can be very different (as you pointed out). Immune-suppressing treatments are known to make at least some infections worse, so it's important that doctors know what they are treating. On the other hand, since certain antibiotics are known to have immunomodulatory effects, even folks with autoimmune causes for their persistent symptoms may feel better with long-term antibiotic therapy.
It can be challenging at times to communicate through posts on an internet forum because writing styles differ and assumptions (sometimes incorrect) are therefore made. It's a limitation that we simply have to accept, and hopefully make allowances for at times -- as you and I have done by clarifying what we really meant by our comments.
1) * "hypothesis" as opposed to "theory"
2) fixing typo
3) fixing typo (I may also need more coffee)
4) last typo that I'm fixing; please excuse any more
5) inserting quote from the 2001 article
6) who really cares?
7) changing my highlights from blue to green to distinguish them from Bagge's
8) removing a line I had incorrectly inserted in previously quoted material before I totally confuse everyone