loski01 said...
Thanks for the detailed response. I was more particularly asking if there's anything you've been thinking about adding in but haven't due to logistics/resources etc..?
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sorry Loski - missed this
my outlook is that each of these main things are actually a deeper subject in themselves and would take considerable effort to exhaust before passing over them for something else
for instance - antibiotics
we know 2 or 3weeks of doxy doesn't do it for chronic complex infections - but what about
different 3 drug combos'
or 3 drug combo's pulsed - or 3 drug combos + dapsone pulsed - with biofilm agents
its rather a deep list of trials all on its own
its natural enough to start at the simpler milder end of things and add more heavy hitting drugs later if that didn't work
i think biofilms are also an important part of any therapy for chronic infections - as all chronic infections can be shown to produce biofilms - and biofilms are both physically protective of the infection from the immune system - and directly dysregulate the immune system chemically. they are also highly associated with bacteria in persister cell states - which is one of the known barriers to antimicrobial effectiveness.
but tackling biofilms in isolation makes no sense - so its something to combine with other antimicrobial approaches
in a similar way - no amount of antibiotics on their own can cure an infection - without a functioning immune system - this is what is seen in AIDS patients - no matter how much antibiotics they give them they still die of infections(or at least they did until they figured out how to treat the virus and restore some immune function). Chronic Lyme patients are also immunosuppressed, so its equally important to do things that help restore immune function. this is what i think most of the useful diet and lifestyle approaches are doing eg
-even one poor nights sleep lowers ones immune function significantly - proper sleep is restorative to the immune system
-chronic illness is a chronic stressor - and chronic stress causes immune suppression - so stress relieving approaches - like mind body techniques - yoga - meditation - etc can all help restore more normal immune function
-low reactivity diets - like low carb, grain free, low fibre/GAPS etc help take a load of the immune system - around 80% of which lives in and around the gut - and is occupied with dealing with food and microbes from the outside and in the microbiome - so taking a load of that can help it rebalance and fight infections better
so in this way i see successfully treatment as a multi-layered approach using specific therapies combined together to target and counter specific properties of the infections based on a cohesive theory of the disease aetiology.
i see this as conceptually quite distinct from, say, trying antibiotics for 6 months or a year - feeling they didn't work so stopping those and then trying rife - or bee venom - or whatever is the next alternative therapy in the list is.
i see the former as an iterative process of learning and adjusting to better target the infections and support the body from multiple angles concurrently - and thereby improving the chances of a good outcome over time.
its also an approach that can help a person claim back more quality of life along the way as they learn what helps and what hinders and how to layer them - and i see the latter as more of a series of independent one off experiments looking for the silver bullet - in more of a jackpot or bust approach - but a silver bullet that i do not think exists ( we all wish it did).
i am not sure if its helpful - but thought the more interesting discussion was around the paradigm's underlying the decisions we take rather than this treatment or that. the whys rather than the what if you see what i mean.
there are a couple of more "out there" things i have my eye on - just to keep track of developments
1, Bruce Patterson and his long covid diagnostics and treatment trials threw an interesting result - that 20% of patients self reporting to his clinics as having Long COVID and ending up in his trials - according to his diagnostic tests actually have chronic lyme or tick born infections - but he things the underlying mechanism are essentially the same in long covid and lyme - a population of aberrant white blood cells displaying antigens for much longer than they should - driving inflammation in the vasculature and tissues - and that this explains why the symptoms overlap is so large between these diseases. this is based on cutting edge scientific research by a reputable prominent researcher - and large scale randomised control trials are planned this year - so its only really out there as its such early days - and may or may not pan out in the coming months.
2, i am supporting a group of people over on Phoenix Rising - who are trailing a CFS treatment based on autovaccines for what are thought to be chronic bacterial infections / or dysbiosis in the urinary tract as the main cause of CFS. it seemed like the biggest thing over there in terms of new theories of what causes the disease - and i wanted to help them figure out if there is any truth in it so i offered to help facilitate a kind of informal
open label case series type trial to see if we can see a clear signal one way or another. if its of interest you can do a search over there for "Markov Trials"