New doctor wants to treat empirically for Lyme, good idea?

[kungfudao]

Each test should be assessed under the conditions that those who designed/use the test claim is best. eg: if they say samples should be stored and transported in a particular way, then that should be done. If they say that the testing is intended for those from a particular part of the world, then samples from there should be used. A lot of these potential problems can be easily overcome imo.

"Some medical tests cannot even be replicated from lab to lab."

That's a serious problem, and indicates that the test is not ready for commercial use imo.

"As for honesty of doctors I have seen so much in the medical systems that it beggars belief. They say so much that is scientifically rubbish. The same with hospitals."

I agree and really want to see higher standards in medicine.


That paper showed that the Igenex test was unreliable under blinded conditions, finding samples positive and negative seemingly at random. I can't remember exactly what the results for the mainstream testing were in that paper, but they were significantly better.

Each test should be assessed under the conditions that those who designed/use the test claim is best. eg: if they say samples should be stored and transported in a particular way, then that should be done. If they say that the testing is intended for those from a particular part of the world, then samples from there should be used. A lot of these potential problems can be easily overcome imo.

"Some medical tests cannot even be replicated from lab to lab."

That's a serious problem, and indicates that the test is not ready for commercial use imo.

"As for honesty of doctors I have seen so much in the medical systems that it beggars belief. They say so much that is scientifically rubbish. The same with hospitals."

I agree and really want to see higher standards in medicine.



That paper showed that the Igenex test was unreliable under blinded conditions, finding samples positive and negative seemingly at random. I can't remember exactly what the results for the mainstream testing were in that paper, but they were significantly better.[/QUOTE

This was the Paper: http://www.amjmed.com/article/S0002-9343(00)00701-4/abstract
It is not complete,I guess they want you to purchase the full text. We have some common ground on unreliability of testing.
This paper doesn't say much to me,There is no comparisons to other labs, even though there is 1or2 markers in kilodaltons that are present or not it doesn't change the positives or negatives.They are all consistent regardless of several bands being inconsistent.They are not comparing Igenex results with the so called mainstream testing, and they are only showing the western Blot which is part 2 of two tier testing. The authors are using the Idsa standards which are dis proven,and some of the authors have conflicts of interest.
We agree that testing needs to be improved. I am waiting for Advanced Laboratory Services research to be finished testing, since they are the gold standard.they were the biggest thing to happen in lyme testing ,actually culturing and photographing the bacteria.They got a bad wrap from the Cdc, which turned out to be a false assessment and they proved it.
I guess where we disagree is on waiting to treat horribly sick people. I am in lyme groups and have seen my close Friends Die or go into a coma."A 16 year old girl 110 lbs get encephalitis and go into a coma, her stomach shut down
,her lungs collapsed she came out of the coma with serious brain damage,fists curled into a knot, and unable to move or talk, tracheotomy ,looking like a wwII death camp victim,but frozen nervous system,40 lbs her treatment was to late.
I f Doctors are getting results,than treat them.The fact that some tests are not getting consistent results. is the very reason people go to labs like Igenex. It is well known in the lyme community that the tests being run by mainstream Doctors are garbage. The problem isn't people getting over treated its people getting under treated,even if they are lucky enough to get the correct results and Diagnoses (including the co infections). that they deserve,then they will be treated under the CDC and IDSA guidelines,to no evail.Respectfully I think you've got the whole thing backwards.People are suffering because they cant get treated.Its kind of odd that people test positive for multiple tick borne co infections, and even though they show the markers on the western Blot, They don't meet the 5 band criteria set by the Cdc,and they don.t get treated
Here is some info on the acuracy of the Elisa: https://www.lymedisease.org/lymepolicywonk-new-study-shows-lyme-persists-in-monkeys/

 

[GcMAF Australia]

The dilemma of mainstream Lyme diagnostics can be likened to the doctor who used a two-meter tape strip to confirm who was 21 years or older . The doctor could estimate if someone was over 21 simply by looking at them, by examining them. But, when in doubt, he could bring out that two-meter tape.

Anyone taller than the two-meter strip was deemed at least 21. Anyone shorter had to be under 21. That was the rule. It was a scientific rule because it had been tested in NBA land where most adults were taller than the two-meter tape. So it was a good rule.

It certainly did a good job at preventing most children from being incorrectly identified as being 21 or older. It also frequently helped confirm that persons who were longer than two meters were, in fact, adults.

Unfortunately, many adults aged 21 and older proved shorter than two meters. Afterall, this was not NBA land where the test had been developed. In the town where the doctor practiced, the height of the average woman was less than two meters. So was the height of the average adult male. Some teenagers were taller than two-meters. Many very old people who once measured more than two meters had shrunk and were now shorter than two meters.

This would not have been a problem had the doctor simply learned to listen to his customers, but he was highly suspicious of every one of them. To resolve the problem, the doctor and his peers simply decided to dismiss the results that did not conform to their proposed tape metric, and ignore the complaints from the unruly adults insisting they were over 21.

The bad news was many adults were told they were children. The good news was that the average age of the community was lowered and the need for social security greatly reduced.

And the doctor became very Rich as his friends were in power and could suppress any questioning of this 2Metre Rule.
And most short people accepted the 2Metre rule as they had childish minds and accepted the 2Metre Gospel
and they could go to the doctor and get good measurements of their heights (well if they paid the fees)
Also they could get a lot of drugs to increase their height, or cheat by wearing high heels which they could by from recommended reputable outlets. Of course these were recommended by the good doctor who was always being in the press as a great man of great intelligence

 

[kungfudao]

Each test should be assessed under the conditions that those who designed/use the test claim is best. eg: if they say samples should be stored and transported in a particular way, then that should be done. If they say that the testing is intended for those from a particular part of the world, then samples from there should be used. A lot of these potential problems can be easily overcome imo.

"Some medical tests cannot even be replicated from lab to lab."

That's a serious problem, and indicates that the test is not ready for commercial use imo.

"As for honesty of doctors I have seen so much in the medical systems that it beggars belief. They say so much that is scientifically rubbish. The same with hospitals."

I agree and really want to see higher standards in medicine.



That paper showed that the Igenex test was unreliable under blinded conditions, finding samples positive and negative seemingly at random. I can't remember exactly what the results for the mainstream testing were in that paper, but they were significantly better.

So One big Question??? Esther12 What do you conclude on the Lyme Policy Wonk's assessment of "Study Shows Lyme Persisters In Monkeys PART 1-5 (EMBERS STUDY) it is worth reading. Nothing could be more relevant.
https://www.lymedisease.org/lymepolicywonk-new-study-shows-lyme-persists-in-monkeys/

 

[kungfudao]

Each test should be assessed under the conditions that those who designed/use the test claim is best. eg: if they say samples should be stored and transported in a particular way, then that should be done. If they say that the testing is intended for those from a particular part of the world, then samples from there should be used. A lot of these potential problems can be easily overcome imo.

"Some medical tests cannot even be replicated from lab to lab."

That's a serious problem, and indicates that the test is not ready for commercial use imo.

"As for honesty of doctors I have seen so much in the medical systems that it beggars belief. They say so much that is scientifically rubbish. The same with hospitals."

I agree and really want to see higher standards in medicine.



That paper showed that the Igenex test was unreliable under blinded conditions, finding samples positive and negative seemingly at random. I can't remember exactly what the results for the mainstream testing were in that paper, but they were significantly better.

Actually there was no comparison of mainstream testing in the paper I referenced ???
http://www.amjmed.com/article/S0002-9343(00)00701-4/abstract

 

[Esther12]

So One big Question??? Esther12 What do you conclude on the Lyme Policy Wonk's assessment of "Study Shows Lyme Persisters In Monkeys PART 1-5 (EMBERS STUDY) it is worth reading. Nothing could be more relevant.
https://www.lymedisease.org/lymepolicywonk-new-study-shows-lyme-persists-in-monkeys/

I don't think that it is relevant to any of my concerns about alternative testing. The other areas of controversy and uncertainty around Lyme disease really don't do anything to validate alternative testing.

Actually there was no comparison of mainstream testing in the paper I referenced ???
http://www.amjmed.com/article/S0002-9343(00)00701-4/abstract

Well then it can't have shown that mainstream testing was no more reliable than alternative testing.

 

[kungfudao]

I don't think that it is relevant to any of my concerns about alternative testing. The other areas of controversy and uncertainty around Lyme disease really don't do anything to validate alternative testing.



Well then it can't have shown that mainstream testing was no more reliable than alternative testing.

This is your quote:my underlining
Esther12-Quote 351# mainstream testing: that which has been assessed under-blinded conditions and found to have some internal consistency and an association with a cluster of symptoms.

Kung Fu Dao:After reading my research paper it does not sound like internal
consistency.

Esther 12- Quote,# 4"There's no evidence to suggest that any alternative testing is more accurate and reliable than mainstream testing, and there was an old double-blind study of some alternative testing IgeneX was providing that found it to be unreliable."

Kung Fu Dao: I am showing you a published research paper that shows that after 27 weeks mainstream testing (Elisa) failed to detect Borrelia 60% of the time in untreated monkeys. In addition, the antibody test failed to detect active infection in 100% of the treated monkeys. This suggests that the C6 test is not sensitive enough to detect active disease in those who have had the disease for more than a few months or who in those who have been treated for the disease, but have persistent infection.
In the last 20 pages of your posts, you have been going on about the unreliable of "alternative" testing, and the the dangers of using these tests which leads the reader to believe "mainstream testing" is completely accurate, you have challenged people to show proof that alternative testing is as accurate as mainstream testing. You have also talked of the dangers of using non mainstream testing. Your wording is circumventing.You disregard any evidence that proves your position is wrong,and just wont read it. You are trying to make a point about the dangers of doing the wrong treatments, focusing only on alternative testing and blatantly brushing off the inaccuracy of mainstream testing. You cant get any lower than 100% inaccurate in Chronic Borreliosis. What would you say if this test was done on Igenex???

Esther12-Quote "Happy to look at anything you think is meaningful evidence alternative testing is more reliable than mainstream testing".

Kung Fu Dao: I think my paper shows exactly that.

Esther12-54# Mainstream testing has been shown to be of some value, if that's what you mean by 'accurate'. Alternative testing has not shown itself to be superior in any way yet lots of patients are being told otherwise and encouraged to spend their time and money on testing and treatments which are not supported by any good quality evidence. I just want patients to be able to make properly informed decision about their health care.

Kung Fu Dao: I am still waiting for your evidence of the accuracy of mainstream testing.

Esther-12 Quote 15# The only example I can find of IgeneX's testing being assessed under blinded conditions and coming to different results than 'mainstream' testing is one which showed the test IgeneX was selling was unreliable:

Kung Fu Dao: You are saying, "and coming to different results than mainstream testing" . What are the main stream testing results you are referring too??? They are not in the study???

Kung fu dao: So I guess the bench mark set now to show meaningful evidence that alternative testing is more reliable than mainstream is 100% inaccurate.
In reference to The test you have posted on Igenex so called unreliability: You keep challenging people to prove that "alternative"(your words) testing is better than "mainstream" testing, but you haven't proven that mainstream is better than alternative.Your reference study: http://www.amjmed.com/article/S0002-9343(00)00701-4/abstract ...done 15 years ago is flawed. One sample was sent in immediately and the other was frozen for 6 months.The people conducting this research are the same people that don't believe the bacteria is pleomorphic or changes from one form to another.That is now a medical fact .The study I presented, that you wont read also proves that position. If the Bacteria can change into a cyst, L-form, biofilm,or capable of antigen shifting in changing environments,Who is to say that freezing the bacteria for 6 months couldn't change the outcome of the test. A Better way to conduct the test would have been to send in two samples immediately and compare those samples from the same serum.
You set this narrow one way road, which is not even the topic, and if someone does't go down your road the way you have dictated than you just run them off the road with these words"evidence of alternative testing being more accurate than mainstream testing,
I really find it hard to believe that your only concern is the health ad welfare of sick people, or you wouldn't be so hell bent on defending an IDSA-CDC position...Respectfully

 

[Esther12]

This is your quote:my underlining
Esther12-Quote 351# mainstream testing: that which has been assessed under-blinded conditions and found to have some internal consistency and an association with a cluster of symptoms.

Kung Fu Dao:After reading my research paper it does not sound like internal
consistency.

re the paper that was being discussed here, I had already said:

So the first reliable message from that study is that the Igenex urine test for Lyme was utter crap in 2001. And I wouldn't assume the situation had improved unless there's a very reliable indication of that

That was what I'd cited that study to show, and the possibility of this sort of result is why I think that this sort of assessment needs to be done. If a test leads to results like this, then that shows it should not have been sold to patients.

It was you who had started using it to make points about mainstream testing, not I.

re internal validity, I don't have a collection of references for this, but I did a google earlier in this thread and turned up this paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC85863/

Esther 12- Quote,# 4"There's no evidence to suggest that any alternative testing is more accurate and reliable than mainstream testing, and there was an old double-blind study of some alternative testing IgeneX was providing that found it to be unreliable."

Kung Fu Dao: I am showing you a published research paper that shows that after 27 weeks mainstream testing (Elisa) failed to detect Borrelia 60% of the time in untreated monkeys. In addition, the antibody test failed to detect active infection in 100% of the treated monkeys. This suggests that the C6 test is not sensitive enough to detect active disease in those who have had the disease for more than a few months or who in those who have been treated for the disease, but have persistent infection.
In the last 20 pages of your posts, you have been going on about the unreliable of "alternative" testing, and the the dangers of using these tests which leads the reader to believe "mainstream testing" is completely accurate, you have challenged people to show proof that alternative testing is as accurate as mainstream testing. You have also talked of the dangers of using non mainstream testing. Your wording is circumventing.You disregard any evidence that proves your position is wrong,and just wont read it. You are trying to make a point about the dangers of doing the wrong treatments, focusing only on alternative testing and blatantly brushing off the inaccuracy of mainstream testing. You cant get any lower than 100% inaccurate in Chronic Borreliosis. What would you say if this test was done on Igenex???

"You disregard any evidence that proves your position is wrong" - what position of mine do you think you are even challenging, never mind proving wrong?

Esther12-Quote "Happy to look at anything you think is meaningful evidence alternative testing is more reliable than mainstream testing".

Kung Fu Dao: I think my paper shows exactly that.

How? It does not even start to assess alternative testing.

Esther12-54# Mainstream testing has been shown to be of some value, if that's what you mean by 'accurate'. Alternative testing has not shown itself to be superior in any way yet lots of patients are being told otherwise and encouraged to spend their time and money on testing and treatments which are not supported by any good quality evidence. I just want patients to be able to make properly informed decision about their health care.

Kung Fu Dao: I am still waiting for your evidence of the accuracy of mainstream testing.

I posted the paper above earlier in the thread to show that mainstream testing was of some value, if that's what you mean.

Esther-12 Quote 15# The only example I can find of IgeneX's testing being assessed under blinded conditions and coming to different results than 'mainstream' testing is one which showed the test IgeneX was selling was unreliable:

Kung Fu Dao: You are saying, "and coming to different results than mainstream testing" . What are the main stream testing results you are referring too??? They are not in the study???

I just said "and coming to different results than mainstream testing" as some 'alternative' testing is 'mainstream' 'testing which is then interpreted in 'alternative' ways, and I just wanted to make clear that I was talking about the sort of testing which came up with different results. It was nothing more important than that. I realise that this terminology is a bit loose, but because there are lots of these sorts of details that can be a pain to write out every time I think that it is fair to try to avoid writing marathon posts all the time.

Kung fu dao: So I guess the bench mark set now to show meaningful evidence that alternative testing is more reliable than mainstream is 100% inaccurate.
In reference to The test you have posted on Igenex so called unreliability: You keep challenging people to prove that "alternative"(your words) testing is better than "mainstream" testing, but you haven't proven that mainstream is better than alternative.Your reference study: http://www.amjmed.com/article/S0002-9343(00)00701-4/abstract ...done 15 years ago is flawed. One sample was sent in immediately and the other was frozen for 6 months.The people conducting this research are the same people that don't believe the bacteria is pleomorphic or changes from one form to another.That is now a medical fact .The study I presented, that you wont read also proves that position. If the Bacteria can change into a cyst, L-form, biofilm,or capable of antigen shifting in changing environments,Who is to say that freezing the bacteria for 6 months couldn't change the outcome of the test. A Better way to conduct the test would have been to send in two samples immediately and compare those samples from the same serum.
You set this narrow one way road, which is not even the topic, and if someone does't go down your road the way you have dictated than you just run them off the road with these words"evidence of alternative testing being more accurate than mainstream testing,
I really find it hard to believe that your only concern is the health ad welfare of sick people, or you wouldn't be so hell bent on defending an IDSA-CDC position...Respectfully

There is some good evidence that mainstream testing is of some value. There is no good evidence that alternative testing is. I would like to see more good quality blinded assessment of the alternative testing being sold to patients, and think that those profiting from these tests should conduct this research. At the moment we only have that one paper from 15 years ago.

I'm not hell bent on defending the IDSA-CDC position, tbh, I don't even know what their position is, or care. I just care about the lack of evidence that alternative Lyme testing is of any value. Particularly when this lack of evidence is not being explained to the patients paying for this testing and making important decisions about their lives on the basis of it's results.

 

[duncan]

@Esther12 : "There is some good evidence that mainstream testing is of some value."

Yes, some value - about $500 mill annually, if you're the right people.

You attack what you call alternative testing, and by extension you seem to give a pass to FDA-approved tests that may fail tens of thousands, and may result in unknown suffering. Saying you are indifferent or ignorant of mainstream testing is not good enough. Attacking one side when both sides may be coming up short is at best misleading.

As I - and many here have reasonably pointed out - we need across-the-board improvements in TBD diagnostics.

Science needs to be indifferent to entrenched dogma, or patents & profit margins, or insurance lobbies, or legacy concerns, or name your poison. Right now, it is not.

You want to pick a side, that is your business. But if you're going to base that selection on the sheer volume of potential victims of poor Science or bad policy, I think history may prove you've selected unwisely.

 

[heapsreal]

Back on track.
ivermectin , is this just used for lyme and or coinfections?

What doses are prescribed by lyme drs?

 

[Esther12]

@Esther12 : "There is some good evidence that mainstream testing is of some value."

Yes, some value - about $500 mill annually, if you're the right people.

You attack what you call alternative testing, and by extension you seem to give a pass to FDA-approved tests that may fail tens of thousands, and may result in unknown suffering. Saying you are indifferent or ignorant of mainstream testing is not good enough. Attacking one side when both sides may be coming up short is at best misleading.

As I - and many here have reasonably pointed out - we need across-the-board improvements in TBD diagnostics.

Science needs to be indifferent to entrenched dogma, or patents & profit margins, or insurance lobbies, or legacy concerns, or name your poison. Right now, it is not.

You want to pick a side, that is your business. But if you're going to base that selection on the sheer volume of potential victims of poor Science or bad policy, I think history may prove you've selected unwisely.

Of course it's always good to improve the testing we have available to us, and we want science to progress according to a rigorous examination of the evidence (which it can fail to do), but these observations are not any substitute for evidence of the value of alternative testing.

There is some good evidence that mainstream testing testing is of some real value to patients. Alternative Lyme testing does not have any good evidence of value. If acknowledging that fact places me on some side in some battle, then so be it, but I have no interest in this.

 

[kungfudao]

Of course it's always good to improve the testing we have available to us, and we want science to progress according to a rigorous examination of the evidence (which it can fail to do), but these observations are not any substitute for evidence of the value of alternative testing.

There is some good evidence that mainstream testing testing is of some real value to patients. Alternative Lyme testing does not have any good evidence of value. If acknowledging that fact places me on some side in some battle, then so be it, but I have no interest in this.

You are impossible .I just gave you a published research study showing that testing, by the Steere camp (you can be sure that they weren't using Igenex) showing that after 27 weeks mainstream testing (Elisa) failed to detect Borrelia 60% of the time in untreated monkeys. In addition, the antibody test failed to detect active infection in
"100%" of the treated monkeys. This suggests that the C6 test is not sensitive enough to detect active disease in those who have had the disease for more than a few months or who in those who have been treated for the disease, but have persistent infection.and you still have the gall to say QUOTE:"There is some good evidence that mainstream testing testing is of some real value to patients"??? are you joking???
Your remarks ??? are a dissidence in my mind. what dont you understand about"100%"
your credibility just took a major nosedive.

 

[GcMAF Australia]

Back on track.
ivermectin , is this just used for lyme and or coinfections?

What doses are prescribed by lyme drs?

I googled some stuff
http://lymebook.com/ivermectin-albendazole-diethylcarbamazine-alinia-mimosa-pudica
http://forums.phoenixrising.me/inde...-for-lyme-good-idea.38866/page-20#post-629028

Also from Klinhardt
There is one particular nasty parasite I want to mention. It's called the lungworm in dogs. It's called the lungworm. As it made the transition into humans, it's one of the roundworms that's called Varestrongylus klapowi. Larry Klapow was the biologist who discovered that one. It's in over 80% of the chronic fatigue patients that's present. When you successfully eliminate the parasite, the fatigue is gone. There is a direct relationship.

I've been working with that now for four years and I'm actually convinced that this parasite is present in most people with chronic Lyme disease and should be treated first. The way we're treating is two-fold, one we create a liposomal worm cocktail. We use an herb that unfortunately, the last time I even mentioned it only at one of my courses, the entire stock in the U.S. is bought up and no longer available because thesources have immediately dried up because there is not enough production. So I'm not going to mention it to you Joe.

There is a medical drug that comes close to it. It's a cocktail of ivermectin. It's the key ingredient for the lungworm. We use a high dose of 12 mg two to four times a day. We put that in the cocktail and then make it liposomal. With that, it would have a huge effect on the lungworm. In addition that we let patients inhale SSKI, that's potassium iodide. It kills the parasite on the surface. That is important. It has become a hugely important first step to eliminate the lungworm from the patients.

With that everything changes. People feel better. They have more energy. Their brain gets clearer long before we even get to treating the Lyme disease. So we do the parasite thing first and then we do the cocktail for the Lyme spirochetes and Babesia, and Bartonella.

DM: That is interesting. I just read an article today or yesterday that noticed an observation that in Africa when they put patients – I think it was some type of parasitic infection. I think they called it river blindness in Africa. They treat them once or twice a year. I think once a year and they're trying it for twice but they noticed that the communities where the individuals were treated that they radically reduced the incidence of malaria.

DK: Absolutely. It's the same here, you know, the relationship between parasites and Babesia is the same as the parasites in Africa and malaria. People that have parasites don't have defenses against malaria get malaria. They eliminate the parasites and the malaria has no chance of finding fertile ground in the patient.

 

[GcMAF Australia]

Back on track.
ivermectin , is this just used for lyme and or coinfections?

What doses are prescribed by lyme drs?

I received this after submitting to another group of including Lyme Drs

"
someone who has a lot of experience with it as a patient. Thought I’d pass it on.

I have a girlfriend who used Ivermectin for horses (& maybe cattle?), until I told her about the compounded version I used, from Key pharmacy in Washington. She thinks Ivermectin helps with her Bartonella, but she also thinks she has filarial parasites similar to mine. I used Ivermectin for parasites.
I’ve also used DEC, aka Diethylcarbamazine , aka hetrazan) and purchased that from internationaldrugmart.com. Watch out for peripheral numbness though, all parasite drugs, including babesia drugs, seem to cause numbness for me. I also had funny vision symptoms with ivermectin, flashing “lights” in my eyes at night which disappeared after several courses of the drug. I still use ivermectin & sometimes DEC -. I take Ivermectin 36mg BID (compounded from Key pharm in WA state) 4days on 10 off.
I worked up to 3 DEC (150mg) twice/day but that’s a very high dose. My filarial symptoms are: inflamed knee, biting or itching sensation(s) that flare and strange shooting pains in my legs upon waking.
Eva Sapi discovered that ticks harbor filarial a few years ago but we’re not sure if I got my parasites from my tick bite or when I lived in South America since filarial are also transmitted by other biting bugs and flies in several regions of the world"

 

[Esther12]

You are impossible .I just gave you a published research study showing that testing, by the Steere camp (you can be sure that they weren't using Igenex) showing that after 27 weeks mainstream testing (Elisa) failed to detect Borrelia 60% of the time in untreated monkeys. In addition, the antibody test failed to detect active infection in
"100%" of the treated monkeys. This suggests that the C6 test is not sensitive enough to detect active disease in those who have had the disease for more than a few months or who in those who have been treated for the disease, but have persistent infection.and you still have the gall to say QUOTE:"There is some good evidence that mainstream testing testing is of some real value to patients"??? are you joking???
Your remarks ??? are a dissidence in my mind. what dont you understand about"100%"
your credibility just took a major nosedive.

If you think that study shows that mainstream testing will not detect active infection in 100% of patients then you have misunderstood it. If you don't think that, then I don't understand why you think that this refutes anything I have said.

When that study came out I remember thinking that it was interesting, but that it was not relevant to showing the value of alternative testing. I don't see how you can claim otherwise.

 

[Valentijn]

There is some good evidence that mainstream testing testing is of some real value to patients. Alternative Lyme testing does not have any good evidence of value. If acknowledging that fact places me on some side in some battle, then so be it, but I have no interest in this.

It's of real value to about 50% of patients. It leaves the other 50% with actual Lyme infection undiagnosed. I think that's a huge problem. And until it is sorted out, "alternative" testing is going to continue to be widely used.

But since the LTT-Elispot solves the false-negative problem, while not resulting in a higher rate of false positives, it's looking quite a bit better than the mainstream test. And that has been published, and mentioned repeatedly. One useless urine test from Igenex 15 years ago does not suggest that all alternative testing is worthless.

 

[Esther12]

It's of real value to about 50% of patients. It leaves the other 50% with actual Lyme infection undiagnosed. I think that's a huge problem. And until it is sorted out, "alternative" testing is going to continue to be widely used.

But since the LTT-Elispot solves the false-negative problem, while not resulting in a higher rate of false positives, it's looking quite a bit better than the mainstream test. And that has been published, and mentioned repeatedly. One useless urine test from Igenex 15 years ago does not suggest that all alternative testing is worthless.

Amongst those who have already been infected for a month or so, it is not widely accepted that only 50% of those infected get a positive result, but even if that were certainly the case it still would not show that alternative testing was of any value.

I don't know much about the LTT-Elispot and Jonathan Edwards was sceptical here: http://forums.phoenixrising.me/index.php?threads/validity-of-elispot-ltt-lymes-test.35634/

If there is a test which has good evidence that it is more reliable than current testing, then that would be great, but I'd like to see it be assessed under blinded conditions. That the only time alternative testing has been assessed under blinded conditions it was shown to be worthless does show that there's no good evidence alternative testing is of any real value, and is good reason to be sceptical of those selling it imo.

 

[Valentijn]

Amongst those who have already been infected for a month or so, it is not widely accepted that only 50% of those infected get a positive result, but even if that were certainly the case it still would not show that alternative testing was of any value.

The study finding 33% false negatives in stage two (Western Blot) of the standard test protocol did not involve early infection. And if they had included the first stage (IgG/IgM serology) even more would have tested negative and not even make it to stage two testing.

I don't know much about the LTT-Elispot and Jonathan Edwards was sceptical here: http://forums.phoenixrising.me/index.php?threads/validity-of-elispot-ltt-lymes-test.35634/

Well gosh, if a doctor somewhere is skeptical of something, then I guess that proves it's invalid. Even if he hasn't bothered to read the existing research on the test or regarding Lyme in general.

If there is a test which has good evidence that it is more reliable than current testing, then that would be great, but I'd like to see it be assessed under blinded conditions. That the only time alternative testing has been assessed under blinded conditions it was shown to be worthless does show that there's no good evidence alternative testing is of any real value, and is good reason to be sceptical of those selling it imo.

Stop applying the results of one test to every single other test. It's irrational. And the problem still remains of a very high rate of false negatives on the standard test.

 

[Esther12]

The study finding 33% false negatives in stage two (Western Blot) of the standard test protocol did not involve early infection. And if they had included the first stage (IgG/IgM serology) even more would have tested negative and not even make it to stage two testing.

The figures I've seen presented for the reliability of mainstream testing are much better than those which you are using, but I've not looked closely at the evidence.

Well gosh, if a doctor somewhere is skeptical of something, then I guess that proves it's invalid. Even if he hasn't bothered to read the existing research on the test or regarding Lyme in general.

That's not what I said. I've not seen good evidence of the value of this test and it seems that your belief that it is an improvement on what we have is not universally accepted. Maybe good evidence of it's value will emerge, but I don't think that I should value your opinion over Edward's.

Stop applying the results of one test to every single other test. It's irrational. And the problem still remains of a very high rate of false negatives on the standard test.

I'm not applying the results of one test to every test, but I am pointing out that this is the only time alternative testing has been assessed under blinded conditions. Until good evidence of other alternative tests being more useful than this, we cannot know that they would perform any better. If the only time mainstream testing had been assessed under blinded conditions it had produced equally poor results then I would be just as condemning of mainstream testing.

 

[Valentijn]

The figures I've seen presented for the reliability of mainstream testing are much better than those which you are using, but I've not looked closely at the evidence.

So you're just assuming it's fine, even if you can't be bothered to find the evidence.

That's not what I said. I've not seen good evidence of the value of this test and it seems that your belief that it is an improvement on what we have is not universally accepted. Maybe good evidence of it's value will emerge, but I don't think that I should value your opinion over Edward's.

It's not his (or your) opinion versus mine. It's his and your opinion versus the published evidence.

I'm not applying the results of one test to every test, but I am pointing out that this is the only time alternative testing has been assessed under blinded conditions.

And where's the research where the mainstream test has been assessed under blinded conditions?

You're setting a ridiculously high bar for alternative tests at this point, while giving the mainstream two-tier test a free pass.

 

[duncan]

@Esther12, you've failed time and again to adequately explain the value of mainstream testing, so adopting a rigid position that (what you call) alternative tests need to be validated in a manner similar to those same questionable mainstream tests, is an uncomfortable corner in which to have painted yourself. That you cannot see that is puzzling.

Some have approached this from a business dynamic, e.g. former CT Attorney General Richard Blumenthal when he took the IDSA to court. That might help explain why you categorize diagnostics the way that you do. Do you own stock in TBD diagnostic companies like Immunetics or Imugen?

I wouldn't invoke Edwards, as I seem to remember he has already hinted his Lyme expertise is limited, much like the value of those mainstream tests of which you seem so fond.