The lyme world needs the top doctors/ healers etc. to brainstorm together as one.

The only attempt at this as far as I know is the annual, what is it Iliads ? meeting which is in a different location every year? There’s a lot of talking from that but not much action, it’s more like they’re just patting each other on the back. Repeating the same stuff every year, I don’t even bother with it anymore. It might be helpful if you’re new to this but if you’re a veteran it’s never anything new.

And what other several lyme organizations there are, they are more or less just a media outlet for the lyme world.

Not doing this is insane. But then again they were also in it for their own financial reasons.In other areas of science this has helped improve and solve problems.

This comes to mind from a post a couple weeks ago asking if you used antibiotics or herbs for treatment and would you do it differently today.

Well I chose antibiotics because I found a doctor that knew it what they were doing. Had I done herbs on my own it would’ve been extremely overwhelming. Then add the other treatments which are not herbal or abx.

The more treatments explored the more confusing this gets.

I’m kind of rambling here, then again that’s my style ha ha

i think the problem is ultimately a political one - rather than an issue with LLMD's or what information they share at conferences etc

the kind of research needed to develop a new drug to phase one stage is well outside the budget of any LLMD
for example its around $5M to get a new drug to a simple trial stage
its then around $50M minimum to get through FDA approval - that's outside the reach of even a large group of LLMD's

at present we do not have the basic science to understand exactly how, at a molecular level these different organisms are evading current antibiotics.
without that knowledge we do not have the flag on the mountain top to march towards and no real direction to lead drug design or discovery efforts.

as a result all existing trails are along the lines of simple trial and error
eg "here are 4000 drugs that are already approved - lets see if any of these work"

that is not wrong in the circumstances - just a bit of a shot in the dark - and the chances of getting something that is a new single drug cure for chronic Lyme disease from that type of work is rather slim

the basic issues with getting the knowledge needed to design a lyme specific new drug are twofold
1, funding - the amount of government funding available for this type of research has gone up considerably in recent years in the USA , as a result of political pressure, but is still a drop in the ocean - compared to other infectious diseases - for example NIH funding is 200 times less than West Nile virus, on a per patient basis in the USA - which is a disease that most people have probably never even heard of

VIEW IMAGE
source
https://centerforlymeaction.org/?fbclid=iwar0ptnmzuvzi3c-wmltxim3lrkuz5fmp71s_tk1gfqwdwscnnn5qonos-rq

2, a lack of suitable researchers willing to work in this field - this is where the controversy over the existence of chronic Lyme and its persistence despite antibiotic treatment is so toxic. promising new researchers are understandably reluctant to work in a field where a substantial number of their peers and especially the establishment views the subject as bogus. That represents a risk to their careers and there are always safer areas for them to work in.
as a result of this the bodies that allocate grants are actually struggling to place the government funds they have available - so this is actually the primary issue right now.

LLMD's are possibly able to help by channelling patients towards trials - once a drug is found - but they are not the right people with the skillsets to perform the basic research into the microbiology of the Lyme spirochetes.

this is why the public awareness, education and advocacy part is so important, in order to build public awareness, to build political momentum, to change the political policy to replace the people with vested interest in the status quo - its a long term project - circa 30 years perhaps


there are good smart people working on this education and advocacy piece and they have some ideas to optimise treatments based on the drugs etc that we do have
eg here
https://invisible.international/research/

in my view the people that have caused this situation by placing personal gain over the public health they are paid to protect should be tried for crimes against humanity. If your current politicians will not do that you should vote in ones who will.

WalkingbyFaith said...

It can’t just be take antibiotics until you reach remission.

The goal absolutely has to be about something other than finding more antibiotics.

some good points WBF

just to clarify what i mean by research for new antibiotics

the reason current antibiotics do not work - is that they were developed for other organisms and the Lyme organism is able to evade them.
so rather than just more antibiotics that are much the same as the ones we already have - there is the opportunity to develop antibiotics that work properly for Lyme disease - in a way that current ones do not.

we have the technology today to dig into the biology of the organism - understand its functions and design a specific drug that works against it in all its forms and in all locations in the body.

if this was done - it would truly be the game changer we all hope for
a few weeks of such a drug may be all it would take to cure a person of chronic Lyme
not years of 2-5 abx protocols - as is needed with current antibiotics

so the scope would be to develop something all together new - not more of the same type of antibiotics that we already have.

in the absence of that - of course, i agree - we can only optimise what we already have - but as we all know that is a long and arduous road with, huge expense and still an uncertain outcome.

I'm not sure there is another realistic option for a proper curative treatment ( one that doesn't take years of treatment) for the vast majority of patients - other than a new Lyme specific antibiotic agent.

WBF - the second link in my post above is actually to an organisation that is trying to do something very much along the lines you are suggesting

gathering data across many many clinics to try t find the best existing treatments and create a new standard of care

curza 99 ain't gunna come out any time soon so guys like better health guy , lymeninja and jay davidsons lyme summit: pool theyre ducs and knowledge to give us the best of the edge of the fringe ...

aside for astro : 90% of dna connections intial tests were coming back positive cultures . 9 of 10 of smears i see contain borreliosis but when they label it as fibro ,lupus ,rheumatoid ,ms or another bs latin name of a syndrome or named for the duc that found it : persons seem ok with the "what" that borrelia does as a diagnosis; they just dont care to ask "why" ....so long way round the bush even if 90% of the population is already infected nothing will be done whilst we call a stink blossoms "roses " . we need quest or labcorp or another lab to do a two week blood culture test then maybe just maybe we would see the truth of its pandemicy...

Post Edited (bluelyme) : 9/12/2022 5:51:38 PM (GMT-7)

I’m kinda borrowing assumptions from what blue said, but I think if a very accurate test was created to detect borrelia bacteria in the body and widespread testing was done whether symptomatic or not, I bet a high percentage would have it. I bet there are tons of infected people out there who have a variety of mild to moderate symptoms that they either don’t even consider symptoms or think are totally unrelated or blame it on age/genes/lifestyle/injury/stress. They wouldn’t even consider Lyme until crap hits the fan, and they unravel with no diagnosis or treatment in sight.