Buhner's info regarding Post Lyme Disease Syndrome (PLDS) and chronic Lyme, found in Healing Lyme, 2nd edition, Chapter 2:
". . . . there are two primary groups who fall into this category. They are: (1) Those who suffer post-Lyme disease syndrome (PLDS) - this is the group of people who have been successfully treated with antibiotics but, due to bacterial damage to organic structures, still suffer a range of symptoms; and (2) Those who suffer chronic Lyme. These are people who have been treated with multiple courses of antibiotics and despite that are still infected. . . .
There are two other, smaller groups that also belong in the PLDS and chronic Lyme disease groupings. The first are those whose immune systems have activated to attack Lyme (or coinfectious) organisms and, as well, are often working to clear freed cellular fragments from the body. Once the organisms (or the fragments) are gone, the immune system attacks similar organic structures throughout the body. This is a type of autoimmune process begun by a Lyme infection. . . . their condition is not due to the presence of any Lyme organisms but solely due to post-Lyme disease dynamics in the body.
The second group are those who have borrelial fragments and DNA in their system but no cultivatable spirochetes. They may not be infected with viable bacteria but still suffer symptoms over months or years. This is due to their immune system interacting with the borrelial fragments and DNA. This is similar to the autoimmune-like group except that the immune system is not attacking the body's own organic structures but rather organic remnants of the borrelial organisms. In this case they symptom dynamics are still related to the Borrelia. (Of note here as well: Some papers are finding that those borrelial fragments and/or DNA can, under some circumstances, reconstitute themselves as full-fledged borrelial bacteria."
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The first time I read this, it upset me terribly, as I didn't know where I fit in. I first developed bizarre, unexplained symptoms in 2009, which came and went as the years went by and new symptoms developed. In 2015 after getting sick with bronchitis, I developed full blown inflammation and chronic everyday symptoms. I was never diagnosed or treated, so I wasn't technically "post treatment" anything. However, I finally came to the conclusion that I belong to the final group mentioned above. I had a positive DNA test from DNA Connexions. The lab notes on the test results stated: "Species specific target microbial DNA was detected but amplification product was not of expected size. More commonly detected in individuals with long-term infections. Product size differential possibly due to: degraded DNA, mutation of species, unspecified subspecies, other." The lab notes make me think they were seeing fragments.
Since I had the test late last year, I've been trying to connect dots and understand what happened to me. Looking back over my life, I realized I'd had telltale signs of bartonella and possibly babesia since early childhood. My DNA test found only borrelia and ehrlichia. Since coinfection symptoms have been present lifelong, I strongly suspect that I've had Lyme and all these coinfections since birth or early childhood. My best guess is that I, personally, fit into the last category that Buhner mentions above.
I was diagnosed with CIRS by a doctor who attempted to treat me with the Shoemaker protocol. During the CIRS workup, I was tested for the HLA-DR genetic type. I have both borrelia susceptible and multi-susceptible HLA-DR types for biotoxins. According to Ritchie Shoemaker, those with the HLA-DR genetic activation have immune systems that are not able to effectively remove the biotoxins. Once the gene is activated, it creates a chronic cytokine-initiated immune response. He claims the prescript
ion drug Cholestyramine will remove the biotoxins, but those with active Lyme may have horrible symptom intensification with the use of cholestyramine. (That is what happened to me and led to me getting further Lyme testing and ultimately getting a positive result with DNA Connexions.) There is much more to the Shoemaker protocol than just taking cholestyramine. The protocol is a pyramid and all the factors have to be successfully addressed and remediated in order to recover. The final step in his protocol is the use of VIP spray for those who are still symptomatic. He claims VIP may successfully TURN OFF the HLA-DR gene activation and stop the runaway cytokine-initiated immune response. Interestingly, in Healing Lyme 2nd edition in Buhner's monograph on cat's claw (Uncaria tomentosa) at the top of page 365, he reports that research found that with use of Uncaria tomentosa, "there was a decrease in . . . HLA-DR expression."
There's much more I could so on this topic, but I'm sure this is a very long read already
