Also, testing is so poor for some of these co-infections that some patients aren't even aware they are harboring multiple pathogens (since many symptoms from different tick-borne diseases mirror each other). Arguably worse, I think some pathogens like Bartonella and Babesia may actually at first run latent, only to appear after Lyme has whittled down the infected person's immune system.
Sorry,
@sarah darwins , we seem to have cross-posted.
Do you know what I think is probably the biggest hidden elephant in the room when it comes to Chronic Lyme/ME...
Well what if, in general, when it comes to Borrelia and its co infections, PWME (or subsets) don't make antibodies?
If we don't make antibodies, we'd test false negative and we'd never have evidence we've got a chronic untreated neuroimmune disease and/or autoimmune brain disease. These people, us, could easily be herded into a government created fictitious disorder, in which our suffering is then also viewed as fictitious by physicians who see us, as they have no 'tests' to use (believing we don't need tests).
This is why I picked up on your very salient point Duncan, when you pointed out ''some patients aren't even aware they are harboring multiple pathogens''.
Myself and countless others have found this to be the case and I'm sure yourself too. Some PWME PWCFS test negative or low level positive on serology (called negative on lab results), but we test positive using other methods (PCR, LTT, Culture). This is missed generally by 'science', because it's expensive to do PCR on 10+ co infections, and LTT is still not available for things like Bartonella or even accepted. LTT is accepted for other infections of course, but not Borrelia (clearly a political decision as it uses the same technology!).
Officially I don't have Lyme, but I am LTT positive for Borrelia, Chlamydia Pneumoniae and just happen to have serology for Bartonella and Molds. Yet because of no Government approved test, as best, they would call me a PTLDS and put me on CBT GET for 'belief' in ongoing disease, which by total chance is what happens to PWME PWCFS.
If our immune systems (in ME) are broken for 'detecting' tick borne infections in some patients, this would mean, indeed we could have multiple infections and we'd never be able to prove it and get help. And if we the patients don't know, then the doctors don't know and if the doctors don't know then Science doesn't know. This then opens the door for Psychiatry to theorize on past spirits and 'the vapours' causing 'fatigue' and light headedness, meaning CFS can't be new, meaning a new form of Lyme (autoimmune) can never be funded and researched.
So those with Chronic Lyme/Borrelia related ME potentially all end up with mass misdiagnosis of CFS when all along we're often riddled with infection.
I'll try and write something positive for once.
Kenny De Meirleir mentioned a while back that PWME are shown to have these multiple infections when using cutting edge technology testing, such as 'Deep Sequencing', aka Next Generation Sequencing (NGS), which is the same technology used to look for retroviruses I believe. (E.g replaces PCR which although ultra sensitive, can only 'find' what the assay is calibrated to find - unlike NGS). I am presuming (I don't know) this immune finding in PWME PWCFS was discovered at the WPI or what is now referred to as the Nevada Centre for Biomedical Research.
https://www.facebook.com/nvcbr/
A while back, I think I remember they purchased a new machine with some grant money, and I hope have been putting it to good use. The latest I read this year was the re-named WPI (NVCBR) was going down the research route of focussing on: MS, ME CFS, Autism rather than just ME CFS. I'm hoping (dreaming here), this would possibly, be due to a common link between the 3 conditions they have found- possibly Lyme? possibly Autoimmune? Or maybe both.
I'd like to think sooner rather than later, there will be some pathogen research published on what Deep Sequencing can find in PWME,and then eventually these tests be made available to the public. Because if they aren't, we will always be stuck with relying on serology tests (antibody response) that in PWME PWCFS may well be absent when it comes to Borrelia and its Co-Infections.
In terms of controversy it wouldn't be controversial like with a novel retrovirus as the aim of the game would be to detect multiple existing proven infections, in other words, demonstrate PWME PWCFS are immune suppressed in a certain way, and thus vulnerable to certain types of infections....hence to wrap this comment up....it would make sense PWME PWCFS are full of co infections, and this would indeed be the rule, rather than the exception.
But we need the proof, and the proof, hopefully, will come from better testing and 'better' because it uses newer technologies.