Tick-borne diseases in Australia

Australian government tender for clinical pathway development for tick related diseases

https://www.tenders.gov.au/?event=p...tz0XySjVsJFHKoPE8ueJ1N8Ct24FhvXVgj9JO6sqJnjKs

 

Copied from this thread:
The relationship between psychosocial trauma type and conversion (functional neurological) disorder symptoms: a cross-sectional study, 2021, Morsy

The name 'Kanaan' looked familiar. It turns out he's an old crony of Wessely, Sharpe, and Stone. His publication history is full of quackery and pseudoscience and he has been influential in promoting the nonsense of 'secondary benefits'.

Unfortunately for Australians, he appears to have moved here.

In true BPS fashion, he also has managed to keep his snout firmly planted in a trough of taxpayer's money. He scored a grant not long ago to develop a 'treatment' for Australians with suspected tick-borne illness. Unsurprisingly, the treatment is.... you guessed it... CBT.

Patients with tick-borne diseases here are furious that, after years of lobbying to get decent research funded in this area, this rent-seeking quack ended up with much of it.

 

Omg that's awful.

I've got tick borne infections and the only thing that helped me get out of my bed and wheelchair was antimicrobial treatment over years. And I still remain on them daily or I relapse (due to immune deficiency).

There is no way or plausible mechanism for CBT to impact on infection. CBT helped me to clarity that I needed medical care if I had any chance at recovering my health and quality of life. Helped me to realise just how shockingly ill I was and so forth.

But CBT to cure a TBI - that is epic fantasy land woooo hooo

 

The view of the medical profession in Australia is that tick borne infections don't exist here. From what I've heard, this is based on one flawed study which looked for and didn't find borrelia burgdorferi in a sample of Australian ticks (I haven't had the cognitive capacity to verify this for myself).

Therefore any people claiming to be ill after a tick bite (even if they got a rash and other obvious symptoms) are considered to be suffering from delusional illness beliefs -- much like ME/CFS patients. Thus CBT is considered a viable treatment.

 

I don't know about that study, but at a medical conference in 99 I had a chance to talk with Australia's government expert on Lyme. The official position was that most cases were from people who had been overseas. However on a typical year there were 7 cases of people who had not left the country. That they knew of. They also ignore that we have ticks aplenty, and the exact species causing the issues here is possibly not being detected. Ticks generally carry a large number of infective agents.

 

The climate has changed a lot since then. My GP was suspended for 6 months for merely testing for borrelia. A large number of doctors have been struck off (for life) for treating patients with borrelia.

It's so bad that even patients with rickettsia are unable to get treatment (apart from treatments for 'anxiety' of course).

 

My point was that, officially, there were at least seven cases a year they could not account for. There were probably many more that went undetected.

 

I believe that many of the tests for lyme disease have a high false positive rate, so if you conduct them on enough people many will think they have lyme disease when they don't. And those positive tests don't actually give any reason to belive that lyme disease exists in Australia.

If you test someone for lyme disease in a country where there isn't any evidence lyme disease exists, diagnose them with lyme disease based on a test with a high false positive rate, and then give them long term antibiotics, then that's very bad medicine. We shouldn't be endorsing that or giving credibility to that.

 

...but what happens if their symptoms improve after the treatment?

 

That truely is shocking. Sadly there is much denial in the UK too.

 

Not my experience nor understanding.

The testing set up for Lyme is a mess. Specific bands on Western blot testing are excluded due to desire to be able to identify people with infection from those who were vaccinated (way back when that was an option).

I have tested negative using the low quality tests used by the NHS whilst simultaneously having the borrelia bacteria cultured from my blood with ease. The three specific species being identified using immunofluorescence assay. Antibodies to these same three species were identified via testing at Dr Vojdani's lab in California.

It's pretty clear to me who has the better grasp of the science.

Until there is a test showing clear, objective evidence of ongoing infection people with borrelia infections will be left to rot by UK medical system with a few notable exceptions.

The denial of Lyme and chronic Lyme and other tick borne infections is bizarre and baffling to many patients afflicted. Sadly it is based on fear and inability to approach and understand. Easier for some to avoid and ignore.

What is clear is that better, more accurate testing is needed. I doubt very much if your belief that there is a high false positive rate will stand up in time.

I have supported many ME patients to explore the possibility that their symptoms are being caused by ongoing tick borne infections. Those who are able to access long term therapy (usually 3 years plus) tend to get better.

 

Exactly. Mine did.

I went from bed/wheelchair for more than a decade to working full time, completing doctorate and back to cycling 50 miles per day with ease. Took 12 years to figure it out, treat and get stability. Headaches are still a pest. And I'm immune deficient as a consequence. Largely manageable.

My ME wasn't manageable. Absolute nightmare. Total horror.

 

Shocking. That's not medicine - it's institutionalised disease denial. Sad. Science is the answer. Not this type of denial hysteria.

 

Wow so you have a recognised infection that is known to be chronic with the symptoms you have (as in ME symptoms) and you cannot access medical care or treatment for this? Wtf?

That's truely shocking. I'm saddened by this. I hope that the situation changes for you.

 

Do you have reputable sources to back up what you're saying?

Here is what the CDC has to say about Lyme Disease tests: https://www.cdc.gov/lyme/diagnosistesting/index.html. And tests that are not recommended: https://www.cdc.gov/lyme/diagnosistesting/labtest/otherlab/index.html

 

I think we’re getting way off topic, but I’d just like to add that a lot of these concepts have been discussed quite a bit in the infections sub category.

 

My understanding over the years is in line with ILADS and is summarised below:

"Widely-used tests for Lyme are unreliable

• The commonly recommended testing scheme for evaluating a person suspected of having Lyme disease calls for a first step using a highly sensitive ELISA, with subsequent performance of IgM and IgG Western blots only when the ELISA result is positive or equivocal. In this scheme, samples that are negative by ELISA are not investigated further.
• Tests used in this strategy are subject to confounders of testing that affect accuracy and reliability, and because they are linked sequentially in the stated manner, those confounders are magnified, making the possibility of false negative test results much greater.
• Performance characteristics are not only affected by the timing of testing but also by the particular disease manifestation being evaluated. In addition, seronegativity, even with serial measurement of antibodies, has been well documented to occur. (Engstrom, Dattwyler)
• The interpretation criteria for IgM and IgG Western blots, adopted by CDC and ASTPHLD for standardization at the Dearborn conference in 1994 and used for surveillance purposes, were selected to have a specificity of 99%.
• Primarily designed and intended to enhance specificity, this sequence necessarily results in reduced sensitivity. Thus, the two-step process recommended by the CDC fails to capture a significant number of infections.
• Other Western blot interpretation criteria have been suggested that may enhance sensitivity.
  • Hilton E Sivik SL Tilton RC
• The following individual antibody bands are thought to be significant with regard to providing evidence of Bbsl exposure: 23-25, 31, 34, 39, 83-93.
• Emerging testing modalities, including a more promising method of culture, T-cell activation testing, antigen capture techniques, and proteomic methods present new opportunities for addressing the challenges faced in laboratory evaluation of Lyme disease. As in all testing, interpretation of positives and negatives depends upon the clinical setting.
• Stated simply, laboratory results can support the diagnosis but cannot, in isolation, make or rule out the diagnosis of Lyme disease."

The issues with testing goes back to 1994 - to the Dearborn conference -if you want to know more please have a Google / read about this. there are a couple of blogs and so forth that cover this. I've picked up my knowledge over the years from multiple conferences and my personal experience and many others with TBI is that there is something very wrong with the testing. It's I think important to have this information in mind when trying to understand the testing and weaknesses and strengths.

I used to have a detailed document listing the hundreds of paper demonstrating negative tests although objective evidence could be found in tissue samples etc but I can't find it on this computer and my desktop is in storage.

Bw Joan

 

1988 paper:

https://pubmed.ncbi.nlm.nih.gov/305...eri, the spirochete that causes this disorder.