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

[Esther12]

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 do not trust any of the claims made.

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

If this new test has been assessed under blinded conditions, then please show me the evidence.

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

There have been a few studies, but I don't keep track of them. I googled up, and we discussed, this one earlier in the thread: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC85863/

edit: Also there was a protocol for a meta-analysis on this which looked due to be published soon.

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

I have the same standards for all testing. It should be shown to hold up under blinded conditions.

@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.

LOL. Nope - no COI here. No stock of any sort I'm afraid.

I've answered lots of questions about how alternative testing could be assessed in ways which allowed those who designed alternative testing to have control over the standards and procedures, so long as it took place under blinded conditions.

 

[GcMAF Australia]

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

What doses are prescribed by lyme drs?

Another person on Ivermectin

I used this for 18 months or so. One tablet per month initially then once per quarter along with antibiotics (never without). It cleared up a nasty large worm (Filiarisis?) infection i had which you could see around the base of my spine.

Can’t see how it’d work for borrelia though. Any ideas why it might work directly on borrelia?

It worked well on my worms which is suspect were a co-infection from tick bite. They appeared about the same time in my early teens as I was bitten by a tick and had a very high fever. Worms I think are all gone now, though I suspect they have a long, slow growing cycle. An as I understand it ivermectin only kills the youngsters and not the adults. They were large and living on my back. Can’t see/feel any now. Plus I lost a lot of soft tissue swelling/puffiness and it was immediate with first tablet. Lost about a stone and I had a typical reaction to ivermectin if you have worms – like a vibrating inside sensation. An infectious diseases doc who’d worked in Africa knew what I was talking about

AND
Ivermectin and most antiprotozoal drugs can cause numbness and tingling in fingers. I feel this is because when protozoa such as FL1953 and babesia die, they break down into big pieces of "saran wrap". These then clog the capillaries producing those, as well as ocular symptoms.
To dissolve the "saran wrap" pieces I use either a combo of RedRoot and Boneset or BLT (from Research Nutritionals). Red Root and Boneset are toxic if overdoseed. Follow directions and do not use more than 3x/day.
If increasing the BLT or other does not have enough success, esp with ocular symptoms, then I decrease the dose of ivermectin or mepron, artemesinin, etc.
Also I often find Albendazole works better for some of the non-FL1953 protozoa and parasites. It is much cheaper compounded. I pulse it, 4 weeks on, 2 weeks off, for 3 cycles. It has cleared up many wierd rashes which may indicate a larvae migrans.

 

[GcMAF Australia]

can we get of the test debate
PLEASE

 

[heapsreal]

can we get of the test debate
PLEASE

Agree.

 

[Valentijn]

If this new test has been assessed under blinded conditions, then please show me the evidence.

Blinding is no longer necessary for most forms of Lyme testing. The results are generated automatically - there is not someone looking at it to decide if a smudgy line is positive or negative. Bias of researchers is not affecting the results coming out of a machine. It might effect reporting, but doing that dishonestly would be fraud, not bias, and blinding has never been sufficient to control for fraud.

It's ridiculous to demand blinding when blinding is irrelevant for the method of testing being done.

 

[kungfudao]

That's not what I said. I do not trust any of the claims made.



If this new test has been assessed under blinded conditions, then please show me the evidence.



There have been a few studies, but I don't keep track of them. I googled up, and we discussed, this one earlier in the thread: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC85863/

edit: Also there was a protocol for a meta-analysis on this which looked due to be published soon.



I have the same standards for all testing. It should be shown to hold up under blinded conditions.



LOL. Nope - no COI here. No stock of any sort I'm afraid.

I've answered lots of questions about how alternative testing could be assessed in ways which allowed those who designed alternative testing to have control over the standards and procedures, so long as it took place under blinded conditions.

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.

The Herb You are talking about for lung worm is Mimosa Pudica Powder I ordered it From Bulk Herbs some time ago ,It tastes like poo poo,But who cares if it works..I guess I am one of the 20% I didn't get much effect although I greatly respect Dr Klinghardt.

 

[Valentijn]

There have been a few studies, but I don't keep track of them. I googled up, and we discussed, this one earlier in the thread: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC85863/

No, that one was assessing the usefulness of a new type of Elisa, the C6 Elisa, especially in regards to results obtained following vaccination. So ... an alternative test, basically

 

[Esther12]

Just read the paper and dispute the outcome!!!

Why would you think I'd have any interest in disputing the outcome? What have I said that makes you think that I'd disagree with it?

Blinding is no longer necessary for most forms of Lyme testing. The results are generated automatically - there is not someone looking at it to decide if a smudgy line is positive or negative. Bias of researchers is not affecting the results coming out of a machine. It might effect reporting, but doing that dishonestly would be fraud, not bias, and blinding has never been sufficient to control for fraud.

It's ridiculous to demand blinding when blinding is irrelevant for the method of testing being done.

I think that blinding is a useful way of avoiding unforeseen errors and changes in how samples are treated that may seem trivial at the time. If you don't have blinded assessment, then what evidence is there that this test is more reliable at distinguishing from those with Lyme symptoms from healthy controls than mainstream testing?

No, that one was assessing the usefulness of a new type of Elisa, the C6 Elisa, especially in regards to results obtained following vaccination. So ... an alternative test, basically

Told you I don't keep track of them. (Blinded assessment results similar to other 'mainstream' testing mean that it probably wouldn't fulfil my 'alternative' criteria, but it can be difficult to define these things). The CDC itself does talk about validate ELISA tests for Lyme. Are you saying this is an 'alternative' type of ELISA? I did say that I don't follow mainstream testing anymore.

There was an older blinded assessment of ELISA testing here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3298054/

 

[Valentijn]

There was an older blinded assessment of ELISA testing here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3298054/

It's only partially blinded. Samples were tested at three labs: once in one lab, twice in another lab, and twice unblinded in a third lab.

And as they say at the end of the discussion, they were looking at reproducability between the labs, not accuracy of the test itself:

Users of the wls test may therefore feel fairly confident that it is relatively reproducible by the standards applied to most laboratory tests. Laboratory factors that can improve and maintain the reproducibility of Lyme serological tests are discussed by Duffey and Salugsugan (30). However, as others have pointed out (31,32), this high reliability does not translate into high validity. In low prevalence situations the positive predictive value of the test may still be quite low, and this has lead to the practice of confirming positive elisas with Western Blot tests, which are believed to be more specific. Deficiencies of Western Blot tests as confirmatory tests for Lyme disease have recently been pointed out (33). It is therefore important to emphasize that the diagnosis of Lyme disease is primarily based on appropriate clinical presentation, with laboratory tests providing backup (33).

 

[Esther12]

It's only partially blinded. Samples were tested at three labs: once in one lab, twice in another lab, and twice unblinded in a third lab.

And as they say at the end of the discussion, they were looking at reproducability between the labs, not accuracy of the test itself:

Yes, but this is till the sort of assessment which we need for alternative testing, and they did also use non-case controls.

I feel like people keep thinking I've said things I have not. I think that there is good evidence that mainstream testing is of some value, but I've not taken the time to go in to see exactly how much value and what problems there are with it (I am planning to read the meta-analysis on this due, but I'm not going to take the time to go back to read all the original studies, so will still remain cautious about any conclusions). I am largely agnostic on a lot of these issues and have never claimed that mainstream testing is anything like perfect. There is good evidence that it is of some value, and there is no good evidence that alternative testing is of any value. That's the limited point I have been making.

 

[kungfudao]

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.

Unless you are saying that all alternative testing is below 100% wrong that that goes to say that alternative testing is more reliable and accurate than mainstream testing. It is important to note that alternative testing is not considered the standard in medicine. The Elisa is considered the standard . (the test that came up 100% negative)and only followed up with a western Blot if the (100% negative test after 27 weeks) "Elisa" is positive. So as you say you are concerned about human suffering ,than just think about the ramifications to human suffering following this mainstream standard...And you wonder why people go to Igenex???

 

[Esther12]

Unless you are saying that all alternative testing is below 100% wrong that that goes to say that alternative testing is more reliable and accurate than mainstream testing.

I think that you've misunderstood the implications of that paper.

 

[kungfudao]

I think that you've misunderstood the implications of that paper.

I said the Elisa Test used in the Embers study after 27 weeks was wrong 100% of the time:assumed: in the treated monkeys" using the mainstream test Elisa. What is not understood about that.

 

[Esther12]

I said the Elisa Test used in the Embers study after 27 weeks was wrong 100% of the time:assumed: in the treated monkeys" using the mainstream test Elisa. What is not understood about that.

Why you think that this has any implication for the value of alternative testing.

eg: This is not right -

Unless you are saying that all alternative testing is below 100% wrong that that goes to say that alternative testing is more reliable and accurate than mainstream testing.

 

[kungfudao]

Why you think that this has any implication for the value of alternative testing.

eg: This is not right -

Time For you To show some better evidence that " Alternative " testing is less reliable than mainstream

 

[Esther12]

Time For you To show some better evidence that " Alternative " testing is less reliable than mainstream

Better than what?

 

[kungfudao]

Better than what?

Better tan the old outdated paper you supplied before

 

[Esther12]

Better tan the old outdated paper you supplied before

Alternative Lyme testing has only been assessed under blinded conditions once. That's all I can supply. When there is no good evidence that alternative Lyme testing is of any value I have a limited range of evidence to draw upon. I've been saying that this is a bad thing, and that patients need to be informed of this before they decide whether they want to pay for alternative lyme testing.

 

[Valentijn]

Actually the conclusion seems to be that standard testing is useless enough to treat based on symptoms anyhow. At least, that's what the researchers concluded in one of the studies @Esther12 quoted as supporting mainstream testing.

 

[Esther12]

Actually the conclusion seems to be that standard testing is useless enough to treat based on symptoms anyhow. At least, that's what the researchers concluded in one of the studies @Esther12 quoted as supporting mainstream testing.

If you're talking about the paper which looked at IgeneX testing, I had said that I'd only cited that paper as it was the only blinded assessment of alternative testing available.