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aperiomics

frozenborderline

Senior Member
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4,405
Sometimes studies rebuking labs can be a hatchet job as they too have their odd motivations and conflict of interest.
Study was done by someone who believes in lyme persistence and long term antibiotics for lyme and has done important studies in that field , even wrote a book on that I think. The people who believe chronic Lyme is fake hate this guy. He's not in some establishment that blindly trusts cdc or whatever. But I guess people can find any excuse to not trust science. If people want to believe a narrative they will believe it and come up with a retroactive justification
 

vision blue

Senior Member
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1,907
@frozenborderline Same holds true for you as well Not sure how you got to the conclusion that anyone was rejecting science. Sometimes people who say things like that dont k ow how to do science themselves, latch o to others they believe to be respected scientists, anf just take their word for it
Scientists also Wouldn't take all the other arguments a d instead of evaluating and considering each one instead dismiss all out of hand by saying people will come up with anything to not believe. So i think what you accuse others of is actually what you yourself are doing.
 

YippeeKi YOW !!

Senior Member
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16,064
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Second star to the right ...
But I guess people can find any excuse to not trust science.
Uhhhh ... maybe because Science has shown itself to be so malleable, so changeable, so open to financial blandishments, so .... you know, occasionally wrong.

Eggs are the demon seed ..... coffee will kill ya .... wine is good for you, wait, no, it's bad for you, no wait these 15 studies, all under-written and paid for by large adult beverage companies, prove it, whatever 'it' is ....

Science is as fallible as the people who work within its lab walls, direct it, and profit from it, and just as susceptible to faddish thinking and being occasionally led down the primrose path. Just as we're all fallible to some degree or another ....

I'll see myself out now. Play nice ....
 

duncan

Senior Member
Messages
2,240
I don't see how one case can disprove a larger study , even if that is interesting. The larger study did tbe same thing but with more than one test. They found a significant false positive rate but it wasn't 100 percent, so having some people get correct test results doesn't prove that wrong. This is the Fallon study.
So, Fallon is an infectious disease specialist?

But I really can't be bothered to try and convince someone of that with very much effort. It's simple. They have the burden of proof that their tests are validated and they don't show that. The one study I know of shows they have High false positives. Maybe none of this is definitive but with that balance , I don't know why anyone would trust them.
High false positives? Determined how? Also, at the time this study was being done, the U.S. was suffering from about 250.000 Lyme cases each year. This study worked with a cohort of, what, 37? 37. Plus 40 healthy (as in no KNOWN Lyme history) controls. See any potential hurdles statistically speaking?
 
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Garz

Senior Member
Messages
374
So, Fallon is an infectious disease specialist?


High false positives? Determined how? Also, at the time this study was being done, the U.S. was suffering from about 250.000 Lyme cases each year. This study worked with a cohort of, what, 37? 37. Plus 40 healthy (as in no KNOWN Lyme history) controls. See any potential hurdles statistically speaking?

Yep - we are all in our own information bubbles and becoming more and more polarised all the time.

it could be that all of these serologic based tests are simply fallible - with both high false negative and high false positive rates.

for instance - its well documented in the scientific literature - but not well publicised - that things like EBV - which 95% of the adult population has had - and will still have virus in them for the rest of their lives - causes cross reactive antibodies with lyme disease - so do a number of other viruses and bacteria

and on the other side - lyme disrupts the immune systems ability to produce the expected antibodies to the Lyme spirochete - and this is one of the reasons for false negatives ( generally its poor science to test for something with a technology that is undermined by the very organism you are trying to detect).

so it may not be that lab X is poor or corrupt - and lab Y is good and honest

more it may simply be that the accuracy of the test technology being used is poor.
when that is the case you can move the slider over and have less false positives - but that will inevitably cause more false negatives - or visa versa - you cant have few of both with poor test technology - and serology is demonstrably poor for lyme.

but until quite recently we have had no other better options - and so i think everyone has more been just having to make do with what we have and do their best with the tricky interpretation piece.

the other issue is prevalence - its is assumed that the presence of Lyme disease causing spirochetes in humans is rare - and if a human is infected with these spirochetes then they will be ill with Lyme disease - nice and simple and clear cut.

however, if you spend any time looking into the epidemiology of lyme and its vectors and hosts - you will find it inhabits a huge range of animals in the wild from rodents to lizards and birds including seabirds and migrating garden birds that respect no national boundaries - as well as every tiny rodent - biting flies and spiders - basically if it bleeds something that can carry lyme will bite it - including us humans. and we can be exposed by simply sitting in our gardens or on the beach - no need to go off into the wilds.

think also about how we humans used to live only a few generations ago - in huts and shacks in the countryside surrounded with our animals, livestock, dogs and wildlife - often sleeping next to them.
Given that the lyme disease spirochete is not a new disease ( has been found in Egyptian mummies, iceman from the Italian alps etc from thousands of years ago)
so why were they not all dropping like flies from lyme? and why are the numbers of people getting ill from lyme growing exponentially in the last few decades?

it seems likely that our underlying paradigms about this disease are some way off the mark - it may be much more prevalent than we have so far recognised - but only makes some people actually ill - most likely when other factors kick in

with the advent of newer methods like qPCR of tissue - and even newer phage based test approaches - its being found in a high percentage of so called "healthy controls"

so could this be the explanation for why serologic testing for lyme is so contentious?
its well known how problematic serologic testing is for things that are very prevalent
you are basically reduced to trying to pick how positive is a "positive" - when everyone is positive to some degree - eg with EBV serology
throw in the fact that lyme messes with the immune system of those affected and you can see what a mess serologic testing is likely to be

food for thought...
 

duncan

Senior Member
Messages
2,240
more it may simply be that the accuracy of the test technology being used is poor.
Sure.



but until quite recently we have had no other better options - and so i think everyone has more been just having to make do with what we have and do their best with the tricky interpretation piece.
Better options? But yes on the tricky interpretation part.

Given that the lyme disease spirochete is not a new disease ( has been found in Egyptian mummies, iceman from the Italian alps etc from thousands of years ago)
There's Borrelia and then there's Borrelia. :)

it seems likely that our underlying paradigms about this disease are some way off the mark - it may be much more prevalent than we have so far recognised - but only makes some people actually ill - most likely when other factors kick in
This. And this is where it gets complicated and potentially more sensitive. We are talking about more factors than just sloppy Science and legacy concerns and avarice.

food for thought...
Good food for thought, for sure. There is so much more. The whole chimera thing, or the Rickettsia found by Burgdorfer in pretty much all the samples he tested back in 81/82 from Long Island in which he found spirochetes.

It goes way beyond a single lab's choice of Bb outer surface proteins to test its WB against.
 
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frozenborderline

Senior Member
Messages
4,405
wever, if you spend any time looking into the epidemiology of lyme and its vectors and hosts - you will find it inhabits a huge range of animals in the wild from rodents to lizards and birds including seabirds and migrating garden birds that respect no national boundaries - as well as every tiny rodent - biting flies and spiders - basically if it bleeds something that can carry lyme will bite it - including us humans. and we can be exposed by simply sitting in our gardens or on the beach - no need to go off into the wilds.

think also about how we humans used to live only a few generations ago - in huts and shacks in the countryside surrounded with our animals, livestock, dogs and wildlife - often sleeping next to them.
Given that the lyme disease spirochete is not a new disease ( has been found in Egyptian mummies, iceman from the Italian alps etc from thousands of years ago)
so why were they not all dropping like flies from lyme? and why are the numbers of people getting ill from lyme growing exponentially in the last few decades?

it seems likely that our underlying paradigms about this disease are some way off the mark - it may be much more prevalent than we have so far recognised - but only makes some people actually ill - most likely when other factors kick in


I covered all these questions here: I highly recommend a listen. Bc it's not something that can be easily answered in a couple of paragraphs even if I was well enough to write at length.

I don't think there are perfect answers yet but the questions are on point. Basically yes, borrelia burgdorferi has been around awhile. But was it seeded through novel vectors like ticks in bioweapons research? That's plausible but we can't know for sure. There's also the obvious point that a combination of lack of predators (they help keep deer and other hosts of the disease in check , and overall promote healthier ecosystem ) and climate change has caused range of deer ticks carrying lyme to spread.

There's also the problem you mention of why some people have lyme infections and are fine while some get it and are very ill for the rest of their lives. There are these remote Siberian tribespeople that are sero positive for lyme and they are healthy. I think that the answer may be in the environmental microbiome and health. It may be in the exposure to environmental toxins and clean air versus bad air.

Infections matter, but every infectious disease causes sequelae in some people while not in others. I think the resilience or lack thereof to infections has a lot to do with environmental pollutants and toxins. This is what I cover in my podcast above. I think I and my host do a good job covering this subject, which is infinitely complex.

Of course there's always room for improvement , but most lyme podcasts don't discuss the dual factor theory, as @Hip calls it, or lake Tahoe and cfs viral outbreaks that may cause tbe same outcome.
And not many lyme podcasts discuss the nanoparticle mold toxicity issue , so that's some novel ground we cover. We also covered the Swiss agent theory briefly.
 
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frozenborderline

Senior Member
Messages
4,405
Secondly,
I
may have been too agressive earlier , and I didn't mean to attack any individual for disagreeing. But I am frustrated by the idea that people are assuming that because I'm critical of igenex I'm naive about how political the scientific process can be and that I somehow agree with the establishment. So I got annoyed at that.

Is it possible to discuss this without people implying that anyone who is critical of private corporations like igenex or some of the shadier "lyme literate" doctors is a tool of the establishment or not open minded? I agree that lyme is a very complex problem, there may be persistence , it's not studied enough , the establishment has been inadequate in both research and treatment. I address all of this on the podcast. In no place do I agree with the mainstream dismissal of chronic lyme, in no place do I agree

What I was frustrated with earlier is how people assume without looking into it that people like Fallon are tools of the establishment bc they criticized Igenex. In the past I read a solid amount of fallons work and all of the papers on antibiotics and lyme persistence and I think that Fallon is not only a good scientist but one of the few people within mainstream academia who is on our side and advocating for lyme patients and for researching our disease. I have lyme too, and I think im a decent citizen scientist. I realize science doesn't happen in a vacuum , and that there are political and economic incentives that condition it. But rather than take a relativistic perspective in response to this I just think the scientific process and its products still matter, and we just need to raise tbe quality of the science and stay vigilant about the process. And I didn't see any detailed criticisms of Fallons work or any good defenses of igenex. I don't think we should trust a private corporation making big bucks off lyme patient and patients who may not have lyme, just bc they tell people something that gives them comfort in certainty. They're just as suspect as "establishment science" or the cdc. Patients with illnesses like ours are very vulnerable to being taken advantage of, not bc we are stupid, I don't think that, I admire the researchcapacity of the citizen scientists here... but rather bc we are desperate bc we have one of the most horrible illnesses ever with no treatment really. And no certainty. So if someone offers us a straightforward answer it is hard to not believe it.

Anyway this last part is not a response to anyone in particular. It's more of a response to all of tbe responses to the criticism of igenex. I decided it would be best to separate this part from the other part where I discuss my theories on lyme , bc the first part I actually probably would find a lot of agreement with people here, but obviously this part would be contentious.

In general sometimes I see an overly broad split between the scientific establishment and anti establishment theories where people who are screwed over, as we have been, by mainstream medicine, sometimes assume that means all mainstream medical processes or science are suspect. And discount the way mainstream medicine (with pressure from activists) gave us huge treatment advances for things like HIV/AIDS or polio or many illnesses even as it's currently failing huge amounts of chronically ill people. I am very upset about the cdc and nih but I personally have found that there are untrustworthy people in every field, including in alternative medicine. It's not always a good alternative to mainstream medicine. We want there to be straightforward answers. But sometimes we just have to live with uncertainty. It's nice to want things like the answers igenex gives people to be true.

Anyway here's my personal skin in the game: I'm very ill, it started with lyme and mold toxins.

It started with a very textbook acute lyme case which was before I even knew what chronic lyme was, so it wasn't diagnosed using igenex or any alternative labs. Was just based on both clinical positive (fever, aches, obvious bullseye rash after working in endemic region), and positive on the CDC tests that my primary care doctor ran. The antibiotics initially cleared up the symptoms it seemed but at some point they returned. I tried some furrhrr courses of antibiotics but at some point I came to believe that it wasn't an active infection, or if it was, that the treatments LLMDs use were not useful, and that's when I sought an Me/CFS and MCAS diagnosis and got them. I came to think that the infection triggers long term illness but isn't necessarily active after the first phase. Eventually I came to learn that mold toxins were in my house and outdoor area and affected my health a lot. At this point i wss bedridden and I already had permanent damage to my joints. Arthritis like damage. I've had to have several surgeries bc of that and the most recent ones have failed bc of bone fusion issues.

So I'm not dismissive of the issues that can be caused by lyme and I'm not naive about science or scientism or the weakness of the existing treatments
. I have been harmed and given false hope by LLMDs though and I know others who have been, like Ana Harris. I don't think they're always wrong by any means , but I do think it's a field where there is as much capacity for harm as the establishment medicine that forces people to do CBT/GET based on wrong and outdated science. Both can cause harm even though one of them seems to be more "on our side". I personally think that fallons studies of igenex are pretty damning but even without his study, I would be concerned by a company that isnt very transparent about their testing and doesn't have double blind studies proving it works.

However science aside, I do think intuition comes into play at some point. And if people really do intuitively think that active lyme is causing themharm, maybe it is. And they should do whatever treatments they need. My intuition was that active lyme is not the main issue even tho a devastating acute case of it caused by onset. But if other people differ on that I don't see an issue. I just don't know why one would need a private test that doesn't have that much scientific validation and has sketchy financial motives , to tell someone what they already believe. I've certainly made treatment decisions based on intuition and n=1 experiments where science is lacking , so I don't think there's anything wrong with that, but I also wouldn't seek any kind of private mold tests , for example, that don't have scientific validation. I would just trust my gut if there isn't enough science to do anything else.
 

frozenborderline

Senior Member
Messages
4,405
Rickettsia found by Burgdorfer in pretty much all the samples he tested back in 81/82 from Long Island in which he found spirochetes.
The Swiss agent, right ? I covered that here. It's pretty wild.

I do have to conclude ultimately that there may be some environmental dysbiosis, like planetary scale , we should consider , that before we messed up the planet so much "good " and "bad" pathogens were more in balance.
 

frozenborderline

Senior Member
Messages
4,405
You haven't answered either of my questions.
What questions? This is a very long thread , and there are a lot of posts since I last posted, and not all of them were directed at me.

I tried to address more general questions or disagreements in my two long posts above. Given that I'm sick enough where typing for that long wears me out , I did that out of attempt to engage in good faith with people who may disagree. I don't know what I missed , but please be patient
 

duncan

Senior Member
Messages
2,240
When you feel better, maybe re-read the Fallon study and parse down on the conventional Lyme WB metrics. NOT where Igenix uses the vaccine proteins that by definition will not conform to the CDC surveillance criteria.

. He's a psych, btw.
 

frozenborderline

Senior Member
Messages
4,405
So, Fallon is an infectious disease specialist
It's been awhile since I read his work, but he focused a lot on ID, and has done a lot of research on the field. Idk if he is board certified in ID , all I know is his research and advocacy, and you don't need to be an MD with an ID certification to have an opinion on this.
High false positives? Determined how? Also, at the time this study was being done, the U.S. was suffering from about 250.000 Lyme cases each year. This study worked with a cohort of, what, 37? 37. Plus 40 healthy (as in no KNOWN Lyme history) controls. See any potential hurdles statistically speaking
So your point is interesting, that you think lyme has maybe disseminated into the population widely enough that even the people they pick for healthy controls could have lyme ? That's what I'm picking up on from what you're saying.

But while there are some populations, like the aforementioned siberian tribes , who live healthily with lyme , maybe bc of their lifestyle and exposure to healthy air , I think that's unlikely in the US. The population is broadly not that healthy and lyme cases tend to be symptomatic. I also think the western blot cdc tests and Elisa are about 99 percent accurate. So I trust a study design that relies on clinical history and testing to find healthy controls. Especially bc I think lyme is not widespread in every single state , I think it's generally endemic in the northeast , mid Atlantic, and the northern Midwest, and far less common in every other region. I get what you're saying but also, if you really think it's impossible to find healthy controls bc everyone could be exposed to lyme and the existing tests are all wrong , then do you simply think it's impossible to study this ? I don't believethat, personally. I think that the study design is pretty good. I also think that even if it wasn't. It's the responsibility of the people selling the new test to show it works , and that's where I'll end it. You have some interesting takes on difficulties of studying a disease if it's endemic everywhere, but I just will have to agree to disagree if you think its impossible to find healthy controls without lyme bc of that. I don't think it's reached that level. Even if we disagree on that, don't you think the test maker has to prove their test works rather than the other way around?

They're tbe ones saying a new test , unapproved b public health agencies, works. They need to prove that . I personally think fallons study is good but even without it, I wouldn't trust their test until they prove it

Maybe I'm not that intelligent , if my points aren't getting thru, I'm In a crash currently anyway, but there was a thread on this topic already and we may all be rehashing arguments already made. Maybe someone in that thread already went over the same points.
 

frozenborderline

Senior Member
Messages
4,405
. He's a psych, btw
Yeah, but he is not really a wessely type, if you look at his career he has focused on necessity of antibiotics and other treatments for neuroinflammation from lyme. I know he has a psych background , I also know he is so much outside the mainstream that all the lyme skeptic people think he's a quack bc he believes that antibiotics can help lyme. So he's not part of tbe establishment that totally disbelieves in lyme. Maybe he's not totally anti establishment, but knowing his work, he's not blindly pro establishment either. There's a psychiatrist eho works on mold illness bc moldcauses psychiatric issues via neuro inflammation. She doesn't think mold illness is psychosomatic its the other way around , rhat a lot of psych illness as well as physical illnesses have a neuoinflammatory cause from mold exposure. Her name is Mary ackerly. I am pretty sure this guy, Fallon, is more like her than like a wessely type .
 

frozenborderline

Senior Member
Messages
4,405
When you feel better, maybe re-read the Fallon study and parse down on the conventional Lyme WB metrics. NOT where Igenix uses the vaccine proteins that by definition will not conform to the CDC surveillance criteria.
I'm sorry, I really don't understand what you are saying the study did wrong. Maybe will have to come back to it when I feel better , but still what are you saying is wrong with their design. I can come back to it later but I still don't think I would understand the problem either way.

They use healthy controls and give them the igenex tests and they have many positives. I think the study design is simple. Unless you think the healthy controls aren't healthy. But lyme isn't something everyone is widely exposed to like environmental toxins or mono , so finding healthy controls is somewhat simple.

What would you do to see if the study works, how would you change the control selection?
 

frozenborderline

Senior Member
Messages
4,405
https://forums.phoenixrising.me/thr...-57-5-false-positive-rate-im-horrified.49417/
BTW the thread also has igenex responze as well as another study on them. Honestly the ground has already been gone over so I think maybe I have nothing more to say. People in that thread and others on igenex have already repeated criticisms I agree with. For example
False positive is when the person is healthy and their blood comes up positive. Now, in theory, certainly some of these healthy people could have Lyme antibodies from real exposure. Not sure how prevalent this scenario is. If you accept that the healthy people are actually healthy, using alternate criteria instead of CDC criteria for positivity generally leads to higher false positives (source: Fallon 2014). If you don't accept this assumption, then the waters are muddied considerably. So you're correct in a sense depending on a few things.

What people can criticize Igenex for is using alternate testing criteria with no scientifically publishable findings backing this decision. Why did they choose to use alternate criteria? Can they defend this choice to the broader scientific community? I don't think so. So this does make them a bit shady, I'm afraid.

I'm further afraid that their whole business model exists only because the current Lyme tests suck. They spread the idea by word of mouth (not by scientific scrutiny) that their test is 'better' because it's 'different', with no real proof.

That's basically grifting, and taking advantage of sick people to do it
 
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