Discussion in 'Infections: Lyme, Candida, EBV ...' started by Patient4Life, Jan 8, 2020.
I would put a lot of money on Justin Beiber not having Lyme disease. In fact I'd put a lot of money on a lot of people not having Lyme disease!
I really wish someone could know conclusively whether they have Lyme disease or not. The problem comes when you hear/learn that the test is not conclusive & produces false negatives & false positives. how do you know if you have it or which doctors (either saying you have it, or you don’t), are right?
I feel worried when discussing because theres a thought in the back of my mind - could I have Lyme? I had positive tests at a private clinic - but later found out one of the tests cross reacts with autoimmune antibodies, which I do have - so it didn’t necessarily mean I had Lyme. Yet it was taken to mean I definitely did by the doctor, which made me uneasy. Then the more specific test - came back negative. But people with the exact same test results as me got treated for Lyme, sometimes for years, with antibiotics, herbs etc. Some of them have improved so much, but they also had other treatment as well eg PoTS.
But nearly everyone I knew who went there, with ME, despite different symptoms sometimes, was diagnosed with Lyme. Maybe they did have Lyme - but then it would seem everyone with ME really has Lyme as an underlying condition. But that can’t be true because the OMF etc have investigated that I’m sure...But the Lyme publicity is enough that once in a while someone will mention Lyme to me & how they knew someone who had it and took the herbs and now is fully cured and walking around again - and get me to look into it or research or speak to someone - I will feel bad all over again that I didn’t go for Lyme treatment & question if that’s the reason I’m still ill.
This is one of those things that I wish we had conclusive answers for, as I feel confused whenever I listen to “either side” of the debate.
I was just thinking about this earlier. A clear-cut diagnostic test for Lyme would really improve the situation. A lot of people would find they had been misdiagnosed.
Almost certainly a lot of people are misdiagnosed with Lyme due to inaccurate tests, and vice versa. The problem isn't solved even by having accurate tests though, as many highly rated immunologists think having acute Lyme may trigger a real post-infectious condition, where the infection is no longer active. After all, that's more or less exactly what happens in ME/CFS as well, i.e., often you have an acute viral infection, after which you never recover, but most of the time no active infection is found later on. The difference is, post-Lyme patients usually don't have certain characteristic ME/CFS symptoms like PEM for example. So the issue then becomes, if you got badly ill following an acute Lyme infection, but a bulletproof test told you were negative, what are these patients supposed to do next? They'll end up exactly in the same pit as ME/CFS patients, or even worse because their only diagnosis is taken away, with no support from doctors.
My understanding is that Lyme patients have a higher success rate of recovering if treated early. Three months of treatment is sufficient.
That's a good point. I was thinking of a test that showed any past infection, rather than present/acute infection
.. and Henrik Vogt just received the Norwegian Medical Association (GP's) annual writer's award for that opinion piece.. (source)
Here's a google translation of the jury's justification:
The winner of the writer's award for 2020 has for several years been responsible for a number of well-formulated articles and comments in which the case of vulnerable patient groups is spoken. The scientific tab is kept high, and simple solutions and simple explanations of complicated problems are addressed.
Vogt has published in a number of renowned international and national journals and is an active debater at home and abroad - a particularly clear and fearless thought with clear opinions - he has an impressive general medical literary CV. The setting reads as follows:
This year's winner dares to put himself in an exposed position and has repeatedly proved to be a fearless writer who defends unpopular positions - an example to follow for writing general practitioners.
In addition to his medical education, this year's winner has studied history and is a trained journalist. He took his medical doctorate on the subject of systems medicine.
He is a GP in Oslo, more specifically at Ullevål Hageby Medical Center, and a postdoctoral fellow at the Center for Medical Ethics at the University of Oslo.
This year's winner will receive the award for the debate post No, Justin Bieber will probably not have Lyme disease in Aftenposten on 10 January 2020.
They literally gave a participation trophy. Even the explanation is literally "he did things". He also often gets dunked on and dissembles into thought-terminating clichés and insults whenever anyone counters his weak arguments. Utterly pathetic. Medieval level of pathetic failure. And for an opinion piece, which is basically excessive symbolism here (and "diagnosing" at a distance, but that's another problem). Certainly right there with courage in standing up to the weakest, most maligned patient population out there and crushing us for rejecting consent, what is supposed to be a right.
Good grief, it's just like Simon Wessely winning the Standing Up For Science award.
This was also amusing:
From the guy who uncritically reports about what a great cure the Lightning Process is.
Also not really understanding what reporters do. They report, they don't criticize. Other people do that, like science writers or scientists, not reporters. What he wants is for those reports to be interpreted differently, which wouldn't be reporting, it would be opining. Both responsibilities exist, they have different aims. This is one reason most newspapers have a news division and an editorial division. They are not in contradiction to one another but they are quite different. Henrik got his participation trophy for opining, and that says it all.
And seriously going back to the fact that medical professionals clearly don't object to one of their peers "diagnosing" mental illness in someone (well millions but he made a special case here with the Biebs) at a distance without ever having met them or seen their case. I was told this was a bad thing and that doctors don't do that. It's often said so, it sure was said often in US newspapers between 2017 and 2021 because of some reasons. Henrik got a participation trophy for doing that, because apparently it's all well and good to "diagnose" speculatively someone with a mental illness without ever having even spoken to them if it fits the kind of narrative that ends in participation trophies for opining and speculating.
Rules and oaths are just empty words unless their letter and spirit are actually enforced. That's clearly the case for most of the rules in medicine, they may be rules, but there are more exceptions than you could count in a lifetime, tens of millions at the very least.
Separate names with a comma.