The Guardian - Lyme disease solution on the way

https://www.theguardian.com/science/2019/jul/20/lyme-disease-is-solution-on-way

Interesting to read that they believe they are reaching a tipping point in the number of sufferers, that will enable effective solutions to be pursued.

There must be many more people with ME, I wonder what 'our' tipping point will be...

 

Disulfiram is the new Dapsone. All this excitement erupting out of a sample size of three.

Three.

 

This article notes between 2,000 and 3,000 new Lyme cases in the UK per year, but suggest NICE thinks it's actually higher. If NICE bases its estimates on the CDC's calculus, then multiply that number tenfold. So between 20,000 and 30,000 UK Lyme cases, year in, year out. Of those - according to Johns Hopkins estimates noted in the article - 10-20% remain uncured.

That's a lot of chronically sick UK citizens that would have accrued over the last 20 years or more.

 

US prevalence figures may not apply in the U.K. and other countries. I know I remember reading in Canada, US prevalence figures are unlikely to apply. But I’m no expert.

 

Understood. That's why I said "If". Those numbers could be lower. They could be higher. It's nice to have a sort of benchmark feel, regardless.

Keep in mind also that 10-20% uncured figure attributed to Hopkins isn't really from Hopkins, and that number also could be lower or higher, depending on, in large measure, one's medical politics.

 

This looks to be a poorly researched article. There are a huge number of unanswered questions raised.

I do not understand how a study of 15,000 people with a vaccine is going to be any use. If the incidence in the UK is 2-3,000 p.a. and you multiply that by ten but then divide by ten to count the long term cases that are said to matter then in 15,000 people vaccinated and 15,000 controls over 5 years you expect two and a half cases in the control group. What would be a result in the vaccinated group - one and a half cases?

Half way through there is a sensible person saying we do not know enough to vaccinate but the journalist ploughs on with the loaded story.

Disulfiram does not sound as if it has got very far. It is unpleasant to take if you want a half of lager. It sounds as if there are no clinical trials as yet.

 

About the Lyme Disease vaccination for dogs; our vet does not recommend it; but does recommend all other vaccinations for dogs, as well as titres if the pet guardian (or the pet, ha!) does not want to get vaccinations every year.

If I recall correctly we were advised not to get the Lyme Disease shot for our dog due to problem side effects.

I looked up a few websites on this vaccination, and it's still controversial on some sites. Others promote it.

 

I felt a bit like this was all about a vaccine pitch, but I'm biased.

Fallon has one thru the NIH. It was just announced, like a week or two ago. And yeah, no hooch while on Disulfiram.

Also, where IDSA parts company often with patients is in the area of subjective symptoms. I wonder what some portion of those vaccinated dogs would like to tell us if they could.

If a vaccine came forward that I trusted, I would endorse it in a heart beat. A couple sound promising, as on paper they would stop other TBDs in their tracks by stopping tick guts - or even saliva? - emptying into victims.

I don't trust where much of the vaccine money could end up.

 

I wish science could engineer something safe that would eliminate ticks. There have been sterile insect programs - don't know how effective they are. The important consideration with a control program would be safety - and also whose definition of safety we're talking about.

 

Vector control may be the answer.

Very difficult, though. Ticks are notorious hitch-hikers. There is now an infamous study of Lyme into Canada. Know how they mapped it? Through birds' migration routes, and canine infection.

 

@duncan

Health officials used to say there was no Lyme Disease in Canada despite it spreading in the Northern U.S.; apparently it couldn't get through Canadian Customs!

 

@DokaGirl , look to Lyme incidence in dogs. They are the canaries in the coal mine. If dogs show it, people will, too, eventually.

Know how they diagnose dogs in the US? With the C6 - same test they use in the UK for people (last time I checked).

 

Disulfuram highlighted. Eh. Although I am a big fan of Liegner - he doesn't indulge in hype as far as I am aware. Does the name Vicky Logan resonate with anyone? Liegner was her doctor. He's a mensch.

https://www.lymedisease.org/disulfiram-kinderlehrer/

 

@duncan


You've probably heard of CanLyme - a national, Canadian, non-profit charitable organization run by volunteers:
https://canlyme.com/
Couldn't find prevalence on the CanLyme website. I'm thinking it has to be there somewhere...



Government of Canada surveillance re Lyme disease from 2009 to 2017 = 144 cases in 2009, 2025 cases in 2017
https://www.canada.ca/en/public-hea...yme-disease/surveillance-lyme-disease.html#a3



I would expect that as with some other health issues, Lyme Disease in Canada is highly under-reported, but this study says not; the authors do say they can't pin down the "precise degree of under-reporting".

"Conclusion
Our comparisons of human case LD incidence, as reported in surveillance and as suggested by canine seroprevalence, in the US and Canada do not support the idea that there is a high degree of under-reporting (< 10% of cases reported) in Canadian human case surveillance. Even if it could be argued that these comparisons are themselves plagued by under-reporting, the extensive surveillance efforts conducted in Canada mean that we have a strong understanding of where LD risk is occurring, how it has evolved and in what ways it is similar to, and different from, that occurring in neighbouring US states. It is clear that, as for other reportable disease surveillance programs, under-reporting of LD occurs in Canada, and in part the surveillance is designed to discover this. However, tick surveillance data, combined with evidence from serological studies in dogs, do not suggest high levels of under-reporting in Canada. We speculate that the rate of under-reporting in Canada may be similar to that seen in regions where LD is emerging in the US [20]. The precise degree of under-reporting is unknown, and further prospective studies are needed to measure this."
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x


I still have my doubts about the level of under-reporting. Governments have gone from saying there is no Lyme Disease in Canada, to saying there are essentially a couple thousand cases two years ago. We know for instance that harms from medical devices are under-reported. The true numbers for several health issues , especially stigmatized ones could be down played.

 

Canada has geography on its side. That matters. Climate matters.

I still wouldn't trust gov't insights. Lots of US tools out there...

 

For those interested, a US Lyme advocate (and I think a new member of the US Tick-Borne disease working panel) responded with what she felt were errors in this article in this twitter thread

https://twitter.com/user/status/1152747497187495937