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

[kungfudao]

I wasn't interested in trying to assess your knowledge - I've only asked questions of you when I do not know any good answer to them or when I needed to clarify your position on something. That's how discussions and debates normally work.

PS: Also, your questions were irrelevant to the matter I have raised. I'm happy to admit knowing little to nothing about the mechanics of the Elisaspot-LTT, and am really only interested in it's results and their reliability.

nothing is irrelevant when the bigger topic is human suffering as a result of these conditions.

 

[Esther12]

nothing is irrelevant when the bigger topic is human suffering as a result of these conditions.

Some things are irrelevant when the topic is the evidence for validity and accuracy of blood tests.

 

[duncan]

I can think of few metrics as telling of the inaccuracy of blood tests, as humans who are told they are disease-free based on blood tests, when in fact they are not, and they are suffering for want of treatment due to those tests.

Of course, there are clinicians and researchers who do no place much weight in patient reports.

 

[Esther12]

I can think of few metrics as telling of the inaccuracy of blood tests, as humans who are told they are disease free based on blood tests, when in fact they are not, and they are suffering for want of treatment due to those tests.

Of course, there are clinicians and researchers who do no place much weight in patient reports.

An association with a particular constellation of symptoms that holds up under blinded assessment would be a good start. If the claims of alternative/non-mainstream/LL MDs are justified in their claims, that shouldn't be too hard to arrange.

 

[duncan]

Who decides which symptoms?

I fear the difficulties associated with non-specific symptoms and Lyme diagnoses are only going to grow more pronounced.

There are some that may wish to make the list of Lyme symptoms more restrictive, reducing them to minority manifestations. This may render a meaningful correlation with tests more elusive, or reinforce current biases. For instance, making swollen knee joints a required symptom may be merely repeating an emphasis on a specific strain - and there are over a 100 strains.

 

[Esther12]

Who decides which symptoms?

Whoever has designed the test gets a go picking first imo.

 

[duncan]

Odds are the NIH would be involved if it is a diagnostic that might be employed in the US.

Would you want the NIH determining which symptoms belong in an ME/CFS diagnosis?

 

[Esther12]

Odds are the NIH would be involved if it is a diagnostic that might be employed in the US.

Would you want the NIH determining which symptoms belong in an ME/CFS diagnosis?

If they had a blood test that held up under blinded conditions they should choose whatever symptoms were more appropriate for that. I suspect that the ME/CFS label would go on with those for whom we still did not know the cause of their ill health. This is a bit besides the point though, I was talking about the assessment of a blood test - an accurate blood test for most people with ME/CFS would affect so many things around the way the condition is diagnosed that it's almost pointless to speculate on specifics in advance.

 

[duncan]

Really? So the NIH picks fatigue lasting for more than six months, and IL6 in CSF or serum. If you have abnormal IL6 values, and fatigue for more than six months, you join the ME/CFS fraternity.

You'd be ok with that? I would not.

As for who decides what symptoms characterize which stage of Lyme, it matters. You need to connect the dots between Bb diagnostics' tests, and who holds the most sway in deciding about how to approach different solutions, and who stands to benefit. I'm not going to do that for you. You also need to figure out who WILL make that decision - and soon - and what they are likely to recommend, and why.

Little in the Lyme world happens in a Science vacuum devoid of pre-existing spheres of influence and prejudice.

 

[Esther12]

Really? So the NIH picks fatigue lasting for more than six months, and IL6 in CSF or serum. If you have abnormal IL6 values, and fatigue for more than six months, you join the ME/CFS fraternity.

You'd be ok with that? I would not.

As for who decides what symptoms characterize which stage of Lyme, it matters. You need to connect the dots for Bb diagnostics' tests. I'm not going to do that for you. You also need to figure out who WILL make that decision - and soon - and what they are likely to recommend, and why.

Little in the Lyme world happens in a vacuum.

Assessing the value of a blood test is different to creating a diagnosis/criteria.

If the NIH thought that they had a blood test which could help identify the cause of some people's fatigue, and they assessed under blinded conditions the association between abnormal IL6 results and six months of abnormal fatigue, then that would indicate that their test was of some value in helping us understand some patient's fatigue.

You were the one who jumped from my stating

"Whoever has designed the test gets a go picking first imo"

to

"Odds are the NIH would be involved if it is a diagnostic that might be employed in the US.

Would you want the NIH determining which symptoms belong in an ME/CFS diagnosis?"

My statement does not say anything about who would get to determine what symptoms belong in an ME/CFS diagnosis.

Alternative Lyme doctors don't need to have the power to determine when the 'Lyme' label is applied in order to show that they have testing which holds up under blinded conditions and is strongly associated with a certain constellation of symptoms which they have identified.

 

[duncan]

You said the diagnostic would be associated with a symptom cluster.

I merely pointed out who decides which symptoms get put into that cluster does matter.

It certainly matters in the Lyme world as symptoms vary by species/strains, and the only diagnostics widely available test for a single strain - B31.

I think it would matter for ME/CFS, too, especially if the architects of a given study might have an interest in keeping the ME/CFS diagnosis as broad as possible (precisely the opposite of the problem in Lyme).

 

[Esther12]

You said the diagnostic would be associated with a symptom cluster.

Where?

Do you mean:

An association with a particular constellation of symptoms that holds up under blinded assessment would be a good start. If the claims of alternative/non-mainstream/LL MDs are justified in their claims, that shouldn't be too hard to arrange.

I merely pointed out who decides which symptoms get put into that cluster does matter.

That is obviously true, but it's not the same as saying that those who developed a blood test which they claims is associated with a cluster of symptoms are allowed free reign to create/define a diagnosis however they want.

 

[duncan]

Well, in some ways, actually it pretty much is.

No offense intended, but I get the feeling you have little idea what is going on in Lyme.

There is a small core of very influential individuals that arguably wish that symptom cluster could be pared down to four or five symptoms, and would align with B31.

By doing so, the effect could be that thousands of patients could be left out in the cold if their symptoms were different, and/or if they suffered from a different strain/species.

It's a mess as it is with only the B 31 strain that is open to different symptoms.

This is not necessarily a fair and scientific process. Many feel the game is rigged.

This is precisely what people have been trying to advise you about.

EDIT: Even this is a gross oversimplification and misses many important overt and subtle problems.

 

[Esther12]

None of that stuff is reason to think that the alternative testing available is of any value, which is all I've been talking about.

I think that we're back to the start:

An association with a particular constellation of symptoms that holds up under blinded assessment would be a good start. If the claims of alternative/non-mainstream/LL MDs are justified in their claims, that shouldn't be too hard to arrange.

You may be interested in other controversies around Lyme, but I have not said anything about them. I'm interested in whether the alternative testing for Lyme is of any value.

 

[duncan]

How can anyone determine - and then demonstrate and promote - which alternative tests hold value if some of the ultimate judges have horses in the race, or have ties to people that do?

You cannot debate Lyme issues on a theoretical level and come to any meaningful conclusions. You need to appreciate hard-core realities.

This isn't Biology 101. It's Advanced Ethics.

 

[Esther12]

Those who have developed alternative testing can arrange for a blinded assessment of their tests. If there testing was shown to hold up under blinded conditions that would make it easier for them to gain research funding.

 

[duncan]

No.

That SHOULD be the way it works.

 

[Esther12]

No.

That SHOULD be the way it works.

The only time alternative testing was assessed under blinded conditions it was found to be unreliable.

MAYBE if new alternative testing was found to be reliable and useful it would be covered up by those whose careers would be harmed by acknowledging that the alternative Lyme doctors had been doing valuable work... but it would be pretty difficult to dismiss good quality evidence that alternative testing was reliable, and surely the first step for those promoting the alternative approach is to do the sort of blinded assessments needed to gather good evidence.

 

[kungfudao]

Who decides which symptoms?

I fear the difficulties associated with non-specific symptoms and Lyme diagnoses are only going to grow more pronounced.

There are some that may wish to make the list of Lyme symptoms more restrictive, reducing them to minority manifestations. This may render a meaningful correlation with tests more elusive, or reinforce current biases. For instance, making swollen knee joints a required symptom may be merely repeating an emphasis on a specific strain - and there are over a 100 strains.

well said Duncan, talking about two tests and the "mainstream" trying to make the least reliable tests mandatory, before following up with other tests, only delays critical treatment that could save a person a life of suffering...And when did you ever hear about a "Traditional doctor" testing people for co infections. I tested negative on every test for Babesia until I went to Igenex, and they actually photographed it. Its kind of important to know if you have a red blood cell parasite related to Malaria. I would ask Esther12 why is it so important to test positive on an Elisa test before testing the Western Blot .That is the recommendations of the CDC and IDSA. ???

 

[kungfudao]

Well, in some ways, actually it pretty much is.

No offense intended, but I get the feeling you have little idea what is going on in Lyme.

There is a small core of very influential individuals that arguably wish that symptom cluster could be pared down to four or five symptoms, and would align with B31.

By doing so, the effect could be that thousands of patients could be left out in the cold if their symptoms were different, and/or if they suffered from a different strain/species.

It's a mess as it is with only the B 31 strain that is open to different symptoms.

This is not necessarily a fair and scientific process. Many feel the game is rigged.

This is precisely what people have been trying to advise you about.

EDIT: Even this is a gross oversimplification and misses many important overt and subtle problems.

Someone posted earlier about the interview with Willie Burgdorferi and Andy Abrams... A bang on the door ...someone from Rocky Mountain Labs saying he needed to moderate what was said,they didn't let him in ...When the cameras were turned off Willie Burgdorferi said " I didn't tell you every thing".
There is apparently a lot of secrets, Biowarfare, Plumb Island.The deciding members of the IDSA having conflicts of interest, Panel members have stepped down...And a lot of people trying to suppress information, like Alzheimer's and ALS connections to Lyme. Blatant lies like Shapiro in Under our Skin, saying he has never seen Lyme transmission transplacentally, or Fetal death as a result of Lyme.There is multiple studies and research showing both. (see video of Alan Mac Donald reviewing his pathology report of death from lyme)... These are the same people trying to keep the two tier testing just the way it is. Why is that so important . It has left tens of thousands of people dieing or homeless. While we are here debating on wether or not a doctor should be able to legally help someone on deaths doorstep. The real difference between ILADS Doctors and IDSA Doctors is: at a time of desperation, when your whole life flashing before your eyes, one group says your lazy and puts you on antidepressants or pumps you with steroids for pain.(which by the waw is one way to tell you have lyme because it becomes chronically active ,which is my personal experience). Or someone that will sit down with you, sometimes for hours, carefully documenting your life, exposure ,history, pages of Questioners and a gaggle of blood tests to have done asap. and sometimes putting you on a trial of antibiotics to prevent it from going chronic.YES...I've had doctors look me in the eye and say "so many people are going to halve to die before the proper research is done,so I'm sorry I just cant help you." Maybe thats fine with some of you, who are not the ones on the death list. But its NOT OK with me.Because I am on that list.
It is really beyond me why someone would put so much effort into debating about which test is best. none of them are perfect and that is the point. These sick people need help. People with Lyme understand this. Even the Micro Biologist Eva Sapi Changed from Cancer research to Lyme research after being bit by a tick and coming down with Lyme. She realized this was no little thing, it was major. Alan Mac Donald's father died of Lewy body Dementia ,which led him into Alzheimer's research as a Pathologist, He made the connection of General Paresis Dementia from Syphilis and realised a cousin of Syphilis ,Borrelia could likely be the cause of Alzheimer's.Most people have a reason for having such a huge interest in something. It is my opinion that some peoples reasoning is Questionable.