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

[GcMAF Australia]

That does seem pretty high. Is there good evidence that the testing which generated these figures is useful?

Some of the tests are of the highest quality, meaning PCR DNA tests.
The usefullness comes from the appropriate knowledge to then apply the results of the tests.
That is treatment protocols that are useful in improving the person who has infections.

 

[GcMAF Australia]

For some information regarding Lyme from an Australian perspective these sites may help.
http://www.karlmcmanusfoundation.org.au/
and
http://www.lymedisease.org.au/
There are also numerous fb support groups

 

[GcMAF Australia]

In fact legal actions have been launched by Lyme sufferers because they were NOT given appropriate tests.
These are heart rendering stories about medical malpractise and medical negligence.
Furthermore the Lyme community has launched extensive political pressure, which is raising awareness.
Class actions are being organised.
The lyme community is tackling this on multiple fronts.
Almost everyone in Australia has become aware of Lyme Disease and the neglect by governments.

It is almost certain that this will help all sufferers of these diseases, including ME/CFS if people want to use their personal preferences for classification.

I use Lyme Disease not necessarily because I think that it explains everything. Certainly things are complicated.
Rather I think I can make the greatest difference this way.

 

[GcMAF Australia]

There have been a number of very sick people on PR who have been diagnosed with Lyme Disease. Many of these are Australians.
I am aware that a number of these are improving after their diagnosis, some were extremely ill.

Another good site is
http://www.tickedoffandtravelling.com/
Tennille Pooley was very very ill , in a wheelchair. She has recovered and is now travelling Australia to raise awareness of Lyme disease. She has done a fantastic job. This is but 1 of many stories of great recoveries in Australia that I know of. People can wait 20-40 years before they get Lyme Tests done.

 

[GcMAF Australia]

One of the things that the Lyme community in Australia agree on is to look at the diet. The Lyme community here suggest that at least people do this before the results of the Lyme Test come back.
I would suggest if the doctor suggests ABX before the tests come back then that is great. At least that doctor is thinking!

 

[Esther12]

Some of the tests are of the highest quality, meaning PCR DNA tests.
The usefullness comes from the appropriate knowledge to then apply the results of the tests.
That is treatment protocols that are useful in improving the person who has infections.

But we saw with XMRV how PCR can still be misleading. We need testing that has been shown to hold up under blinded assessment, otherwise the results it provides may just be worthless.

 

[duncan]

@Esther12, until diagnostics are separated from treatments, i.e., in many areas, once you have received treatment any positive is usually considered a false positive, pretty much all diagnostics are worthless except for a small window of opportunity after antibodies have had time to form, and before treatment is rendered.

Most are technically only good for demonstrating past exposure to Bb. That is true for main street, FDA-approved diagnostics like the ELISA and Western Blot.

 

[GcMAF Australia]

@Esther12, until diagnostics are separated from treatments, i.e., in many areas, once you have received treatment any positive is usually considered a false positive, pretty much all diagnostics are worthless except for a small window of opportunity after antibodies have had time to form, and before treatment is rendered.

Most are technically only good for demonstrating past exposure to Bb. That is true for main street, FDA-approved diagnostics like the ELISA and Western Blot.

Indeed and thank you Duncan

The DNA tests that I am talking about are also backed up by Antibody tests. They can also be backed up by live culturing of Borrellia. Also the Borrellia can be visualised under the microscope. Also I believe that some labs do some DNA sequencing as well.

The CDC has lost its legitimacy in the eyes of many people. I am talking about researchers in the feild who no longer are impressed by CDC. Much of the literature associated with the CDC has major flaws. CDC can be considered a dinosaur.

 

[GcMAF Australia]

Many people here find that their autistic children have Lyme Disease.

Also see this abstract


Med Hypotheses. 2014 Sep;83(3):321-5. doi: 10.1016/j.mehy.2014.06.005. Epub 2014 Jun 16.
Divergent opinions of proper Lyme disease diagnosis and implications for children co-morbid with autism spectrum disorder.
Kuhn M1, Bransfield R2.
Author information
Abstract
This paper proposes that some children with an autism spectrum disorder (ASD) in the United States have undiagnosed Lyme disease and different testing criteria used by commercial laboratories may be producing false negative results. Two testing protocols will be evaluated; first, the Centers for Disease Control (CDC) and Infectious Disease Society of America (IDSA) approved two-tiered Enzyme Immunoassay (EIA) or Immunofluorescence Assay (IFA) followed by an IgM and/or IgG Western Blot test. Second, a clinical diagnosis (flu like symptoms, joint pain, fatigue, neurological symptoms, etc.) possibly followed by a Western Blot with a broader criteria for positive bands [1]. The hypothesis proposes that the former criteria may be producing false negative results for some individuals diagnosed with an ASD. Through an online survey parents of 48 children who have a diagnosis of an ASD and have been diagnosed with Lyme disease were asked to fill out the Autism Treatment Evaluation Checklist (ATEC) before they started antibiotic therapy and after treatment. Of the 48 parents surveyed 45 of them (94%) indicated their child initially tested negative using the two-tiered CDC/IDSA approved test. The parents sought a second physician who diagnosed their child with Lyme disease using the wider range of Western Blot bands. The children were treated with antibiotics and their scores on the ATEC improved. Anecdotal data indicated that some of the children achieved previously unattained developmental milestones after antibiotic therapy began. Protein bands OSP-A and/or OSP-B (Western Blot band 31) and (Western Blot band 34) were found in 44 of 48 patients. These two bands are so specific to Borrelia burgdorferi that they were targeted for use in vaccine trials, yet are not included in the IDSA interpretation of the Western Blot.


Also there are publications regarding the presence of Borrelia in Alzheimer's Patients. This includes DNA markers and visualistaion of spirochetes

 

[duncan]

There is much that Lyme has been associated with. To get beyond that stage, serious people with no bias, backed with budgets that speak to years and decades, will have to get involved. They will also have to have license to exercise robust efforts without interference from legacy concerns.

I doubt it will ascend from basement and low budget affairs until...well, not anytime soon.

 

[GcMAF Australia]

There is much that Lyme has been associated with. To get beyond that stage, serious people with no bias, backed with budgets that speak to years and decades, will have to get involved. They will also have to have license to exercise robust efforts without interference from legacy concerns.

I doubt it will ascend from basement and low budget affairs until...well, not anytime soon.

In Australia it is rising from the basement.
Time will tell.
Meanwhile many people who have done some decent Lyme Tests are improving their health.

 

[GcMAF Australia]

Here is a website of a German Dr in the Lyme Field
http://www.arminlabs.com/en/about/dr-armin-schwarzbach

 

[MadeleineKM]

In Norway the PCR test are considered as the "golden standard" test, a positive PCR and they never claims that theres no Borrelia precent, even though our health directory understands very little that Borrelia excists they always admit the diagnosis on a positive PCR. Telling that the PCR can be false positive for the spirochete is like going backwards by my opinion but I often make mistakes. In Norway after getting the new priminister two new projects about Borrelia has been started, one about testing and one about neuro borreliosis and genes to try finding out why some get ill and some dont. This has became a big problem and a epidemi in Norway, sounds similar in Australia

 

[GcMAF Australia]

In Norway the PCR test are considered as the "golden standard" test, a positive PCR and they never claims that theres no Borrelia precent, even though our health directory understands very little that Borrelia excists they always admit the diagnosis on a positive PCR. Telling that the PCR can be false positive for the spirochete is like going backwards by my opinion but I often make mistakes. In Norway after getting the new priminister two new projects about Borrelia has been started, one about testing and one about neuro borreliosis and genes to try finding out why some get ill and some dont. This has became a big problem and a epidemi in Norway, sounds similar in Australia

Absolutely MadelaineKM
Interesting projects there do you have some more information??

 

[Valentijn]

Provide the information/scientific evidence as it currently exists that might show the strengths and weaknesses of various lyme tests (there is some out there).

A nice thought, but @Esther12 has repeatedly refused to do this. And I'm not willing to look for papers which support her point, just so I can find the flaws in them. So she'll keep saying alternative Lyme tests are invalid, providing no support, and I'll just keep saying she's wrong, maybe citing the LTT-Elispot paper if I feel like it, but probably not since she can't be bothered to cite anything.

 

[GcMAF Australia]

A nice thought, but @Esther12 has repeatedly refused to do this. And I'm not willing to look for papers which support her point, just so I can find the flaws in them. So she'll keep saying alternative Lyme tests are invalid, providing no support, and I'll just keep saying she's wrong, maybe citing the LTT-Elispot paper if I feel like it, but probably not since she can't be bothered to cite anything.

LOL
Mostly i go to other sites re Lyme as there ar too many sceptics here

 

[Esther12]

A nice thought, but @Esther12 has repeatedly refused to do this. And I'm not willing to look for papers which support her point, just so I can find the flaws in them. So she'll keep saying alternative Lyme tests are invalid, providing no support, and I'll just keep saying she's wrong, maybe citing the LTT-Elispot paper if I feel like it, but probably not since she can't be bothered to cite anything.

I had posted the study which was the only time testing from an alternative lab had been assessed under blinded conditions (where it was found to be internally inconsistent): http://www.amjmed.com/article/S0002-9343(00)00701-4/abstract

And just randomly googled that blinded assessment of mainstream testing, where it was shown to be of some value: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC85863/

But my main point is that lots of alternative doctors and labs have been making claims about Lyme being the cause of a high percentage of CFS patient's symptoms for decades, and that they have reliable testing which shows this, and yet no evidence to support these bold claims has been produced. I can't post links to their lack of evidence, because it's not there, and that's the problem!

If these claims had only been made for 18 months, and proper blinded assessments were only just being done, that would be one thing, but this has been going on for decades. At some point, the failure to produce good supporting evidence becomes damning in itself, particularly when setting up an independent blinded assessment of testing would not be that difficult, and lots of patients are being convinced to part with their money for testing and treatments that do not have good evidence of their value.

 

[duncan]

Ah. Another ME/CFS warrior with a bias against Lyme as a trigger mechanism for ME/CFS.

What a strangely surreal world this is at times.

@Esther12 , I think you're mixing apples and oranges here. I thought your beef was with the differences in accuracy claims in uncovering Bb infections between FDA-approved CDC-preferred tests, and "alternative" tests.

 

[Esther12]

Ah. Another ME/CFS warrior with a bias against Lyme as a trigger mechanism for ME/CFS.

What a strangely surreal world this is at times.

@Esther12 , I think you're mixing apples and oranges here. I thought your beef was with the differences in accuracy claims in uncovering Bb infections between FDA-approved CDC-preferred tests, and "alternative" tests.

I had said:

I've always been open to the possibility that some of those with CFS have problems resulting from Lyme infection, and it does seem that some of those who have suffered from Lyme disease go on to suffer long-term problems which could lead to a diagnosis of CFS.

In reply to you I'd earlier said:

Nonetheless, we have had decades of alternative doctors claiming that a large percentage of patients with CFS-like symptoms really have Lyme and that alternative testing shows this to be the case. In all this time, we've had no good evidence that there claims are true, despite the fact that if it were true gathering such evidence would be relatively easy. I've seen a lot of patients waste their time and money on these tests and interventions and I feel bad about that. I've also seen a few report recovering, although it's difficult to know if that's anything more than what we see with things like the Lightning Process.

 

[duncan]

Well, yeah, but that was a week ago.

I thought you recently were debating which Lyme tests were good or not, not biases against different mechanisms behind ME/CFS.