Innate Immune Changes in the Peripheral Blood

[Ema]

P.S. Why do you imagine the Lyme ELISA is mandated as a prerequisite to the Western Blot?

That question would definitely need its own thread! To answer here would take this thread very far off topic indeed.

 

[duncan]

No, Ema, it does not need its own thread. I posted the query because it was strikingly relevant to the points Dr. Edwards made.

It was meant to provoke thought, nothing more; but thought directly pertinent to the gist of the conversation.

I know to open a thread in the Lyme category if I wanted to explore that particular quagmire in detail...

 

[Ema]

No, Ema, it does not need its own thread. I posted the query because it was strikingly relevant to the points Dr. Edwards made.

It was meant to provoke thought, nothing more; but thought directly pertinent to the gist of the conversation.

I know to open a thread in the Lyme category if I wanted to explore that particular quagmire in detail...

But if someone should happen to disagree with the opinion posted and wish to reply, the thread goes off on a tangent unrelated to the original thread that is better suited to a new thread.

Just trying to keep things clean.

 

[Kati]

There are couple of places in the US that tests for NK cell function. First is Miami, lab of Mary-Ann Fletcher, a well season PHD who gets big grants from the NIH. dr Fletcher wants fresh blood for the assay. i believe it has to reach the lab within 8 hours.

the othe lab is in South California, and Quest offers it, and A few Me experts uses it amd trust its results, as lomg as the samples make it on time.

While there maybe more, i think it would be wise to evaluate the labs and techniques used before sending patient samples for comparison.

 

[Gingergrrl]

My NK cell function test was done through Quest Labs. I had the blood drawn at OMI in No CA in July but not sure from @Kati's post if it was then sent to the Quest Lab in So CA or done up north? I have not yet had this test repeated as my doctor said he wanted at least six months of treatment first and that NK functioning tests are very slow to improve/change even if the patient is feeling better and viral titers have gone down. I did feel my score of 5 was relevant but this was the first time in my life I had ever had this test so no way to compare to what my results may have been back when I was healthy.

 

[justy]

what about HIGH NK cell activity? The labs that you mention that find low levels in PWME are also finding some of us with high levels - I have no idea what this means.

 

[liquid sky]

I hope that we are not giving the impression that nobody is excited about anything. I am excited about all sorts of possibilities. I have just been around long enough not to put too much money on a horse before I have seen it run. Science is all about killing 95% of the ideas around so that you can focus on the 5% that might be right. That can seem negative but it is the only way that works and when you find an idea that might work and then discover it works in ten times as many situations as you expected it is all worth it. Just at the moment ME research needs a killing off of an awful lot of stale ideas because there are far too many around for them all to be right. Anyone who is emotionally attached to these ideas has to realise that science does not do emotional attachment to ideas. That does not mean that you are not allowed to paint the town red when you finally get something worth publishing in the New England Journal of Medicine.

I am not emotionally attached to any particular cause of ME. I am emotionally attached to finding the cause/causes involved in the pathology. Horses (ideas) have to be allowed to run before we can find out who wins the race. We need real science done on the findings we have now. It seems too many biological findings are disregarded as unimportant, while we are told that maybe this or that technology might be useful several years from now. Some of us do not have several more years to wait and even if we do, this is not a pleasant existence. The reason I speak of this finding(SFFV antibodies in PwME)) is because it is the subject of this thread. I would like to see many ideas tested. Let those horses run!

 

[Gingergrrl]

I am not emotionally attached to any particular cause of ME. I am emotionally attached to finding the cause/causes involved in the pathology. Horses (ideas) have to be allowed to run before we can find out who wins the race. Let those horses run!

@liquid sky Well said and I am not emotionally attached to any specific cause either and if it turns out to be autoimmune, or infectious, or NK cells or the Vagus nerve or something we never dreamed of... I just want to get well, I have no investment in what the cause is and leave that to the scientists.

 

[Wildcat]

It is discouraging that 30 years of abysmal funding and so few researchers lead us where we are and we are still muddling through thick fog. It is discouraging that our governments have no will to research this disease. It is discouraging that pharma has no interest whatsoever. And now with Ebola, gvernments and pharma will go on their merry way in finding treatment for Ebola, and then they're not done with HIV. It is so frustrating to be left behind and to be told that the tests that we are paying from our pocket (and they are expensive) are insignificant.

Dysfunctional NK cells is a feature that is very much present in ME. I believe Sonya Marshall-Gradisnik could correlate with severity of illness.

Patients (and i will speak for most of us) want proof of illness on paper. Because no one believes us including drs, employers, insurance companies and family members. Surely, in 2014, there is a way to find a biomarker for this disease, and the capacity to have a case definition with defined subsets?

30 years since Incline Village and Lyndonville, NY epidemics. 80 years since the 1934 Royal free epidemics.

I agree, Kati, with the one exception, that the London Royal Free epidemic was actually in 1955. I think the 1934 epidemic was an outbreak of purported ME in Los Angeles, in a central hospital.


Why are the diagnostic criteria the CCC and ICC not being used as a basis for subgroups, with view to identifyfing subgroups, and 'atypical CCC/ICC' subgroups?

.

.

 

[Jonathan Edwards]

P.S. Why do you imagine the Lyme ELISA is mandated as a prerequisite to the Western Blot?

I am not at all familiar with Lyme testing. I guess you are saying you have to do the ELISA before doing a blot? That to me would just make sense on the basis that Western blots are hugely expensive in staff time and very easy to go wrong and I am not sure quite what extra information they would give, but I have no idea of the detail of these particular assays for Lyme.

 

[user9876]

I am not at all familiar with Lyme testing. I guess you are saying you have to do the ELISA before doing a blot? That to me would just make sense on the basis that Western blots are hugely expensive in staff time and very easy to go wrong and I am not sure quite what extra information they would give, but I have no idea of the detail of these particular assays for Lyme.

I assume that suggests that the ELISA test has a highish false detection rate but doesn't miss many cases so can be used as a filter to a more expensive test. If this is the case it would seem to suggest that the ELISA test cannot be relied on in its own right hence the need for the Western blot?

 

[Jonathan Edwards]

I assume that suggests that the ELISA test has a highish false detection rate but doesn't miss many cases so can be used as a filter to a more expensive test. If this is the case it would seem to suggest that the ELISA test cannot be relied on in its own right hence the need for the Western blot?

That makes general sense to me too, but I am not an expert. The advantage of a blot is that you look not just for a staining signal but it has to be in the right place for the right antigen on the nitrocellulose sheet, which ought to make it more specific. It might be less sensitive though, but if it shows staining, but in the wrong place, then it may be a useful way to weed out false positives.

 

[Valentijn]

I assume that suggests that the ELISA test has a highish false detection rate but doesn't miss many cases so can be used as a filter to a more expensive test. If this is the case it would seem to suggest that the ELISA test cannot be relied on in its own right hence the need for the Western blot?

ELISA has a high rate of false negatives. But Western Blot is only routinely used to confirm positive ELISA results.

Hence people getting a little annoyed about the whole fiasco. It's pretty good at ruling out those who really don't have Lyme, but quite bad at detecting those who do have it.

 

[Jonathan Edwards]

ELISA has a high rate of false negatives. But Western Blot is only routinely used to confirm positive ELISA results.

Hence people getting a little annoyed about the whole fiasco. It's pretty good at ruling out those who really don't have Lyme, but quite bad at detecting those who do have it.

That certainly figures.

 

[Valentijn]

That certainly figures.

It's certainly useful for research, where it's important to be quite certain that the patients have a Borrelia infection. Though there is some uncertainty in that it might or might not be excluding non-burgdorferi strains.

It's just not really suitable for clinical use, despite that it seems to have been carried over into the clinical realm as the standard for diagnosing and treating patients.