Well known, famous people reported to have Lyme Disease.

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!
 
InitialConditions said:
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!
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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. :( :cry:

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.
 
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lunarainbows said:
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. :( :cry:

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.
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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.
 
JES said:
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.
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That's a good point. I was thinking of a test that showed any past infection, rather than present/acute infection
 
Kalliope said:
Henrik Vogt has a an opinion piece about Justin Bieber in a Norwegian newspaper today. Henrik Vogt is MD and leader of the user organisation Recovery Norge, which shares stories mostly about people who say they were cured from ME by Lightning Process. This in order to "provide hope".

He warns about uncritical reporting about Lyme disease, and how the media and the public accepts such celebrity stories without asking questions. Bieber has a lot of influence, and can thus spread misconception.

He says that Lyme disease has, particularly in USA, become a pseudoscientific, alternative-medicine-explanation for several debilitating symptoms. Symptoms without specific diagnostic explanations which are often considered as "medically unexplained", but that may, for instance, be compatible with prolonged, severe stress.

The symptoms are the same as in CFS or ME and then he links to this article from BBC: Long-term Lyme disease "actually chronic fatigue syndrome"

He further talks about a pseudoscientific alternative-medicine environment on the rise in USA with doctors on the forefront and with research "as resistant of facts as vaccine resistance".

Then he writes:
There are many people with health problems that can be difficult to explain.It is important to emphasize that these problems can be serious and need better understanding and better help for patients. But it is also important for medical ethics and public health to put an end to this alternative medicine, and celebrities in search of explanations are unfortunately the most effective vectors for their medical misinformation.

And towards the end he writes
The fact that doctors are in the foreground does not mean that it is durable. There are many examples of doctors acting wholly or partially with questionable treatment.

Nei, Justin Bieber har sannsynligvis ikke borreliose
google translation: No, Justin Bieber probably doesn't have Lyme disease
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.. 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:

HENRIK VOGT
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.
 
Kalliope said:
.. 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:

HENRIK VOGT
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.
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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.
 
Kalliope said:
.. and Henrik Vogt just received the Norwegian Medical Association (GP's) annual writer's award for that opinion piece.. (source)
...
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
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Good grief, it's just like Simon Wessely winning the Standing Up For Science award. :yuck:

This was also amusing:
He warns about uncritical reporting about Lyme disease
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From the guy who uncritically reports about what a great cure the Lightning Process is.
 
EzzieD said:
From the guy who uncritically reports about what a great cure the Lightning Process is.
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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.
 
Merged posts
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ABC News: 'Justin Timberlake reveals Lyme disease diagnosis'

'Music superstar Justin Timberlake has been diagnosed with Lyme disease.'

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'"If you've experienced this disease or know someone who has -- then you're aware: living with this can be relentlessly debilitating, both mentally and physically," Timberlake wrote. "When I first got the diagnosis I was shocked for sure. But, at least I could understand why I would be onstage and in a massive amount of nerve pain or, just feeling crazy fatigue or sickness. I was faced with a personal decision. Stop touring? Or, keep going and figure it out. I decided the joy that performing brings me far outweighs the fleeting stress my body was feeling. I'm so glad I kept going."'

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'Most cases of Lyme disease can be effectively treated with a 10- to 14-day course of antibiotics. However, in some cases, prolonged symptoms may persist after treatment, including fatigue, body aches, and difficulty with concentration or memory. This condition is sometimes referred to as Post-Treatment Lyme Disease Syndrome, or PTLDS.'

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'Other celebrities who have spoken publicly about their struggles with the disease include comedian Amy Schumer, singers Shania Twain and Justin Bieber and Reddit co-founder Alexis Ohanian.'
 
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I wonder if some celebrities with ME/CFS declare that they have (post-infection) Lyme disease because it is a politically/culturally more acceptable diagnosis.

At least in the news article posted above I didn’t see JT mentioning his bullseye rash from his tick bite, etc.
 
Skateboarder Dan Corrigan (also living in Los Angeles). Not super famous but he uploads daily to YouTube and gets around 20k views.
He also talks about his health struggles publicly.
See this recent scene for example:

Transcript (edit: formatted and highlighted symptoms)
I just have like a little bit of a mental breakdown. I just beat the [] out of my car with my skateboard.
I smashed down my tail light. I [] dent it in the side throwing my skateboard at it over and over.
Um, I I cannot begin to express how frustrated I am with this whole health situation and not really being able to do anything about it.
I I get so many comments like, “You got to go see this person and go do this and try this.”
Like, I’m doing all of that stuff. Like, I’m talking to professionals. I’m making phone calls. I’m making appointments.
It’s like it like I’m so appreciative I really am of like how cozy and comfortable my life is and the fact that I get to skateboard for a living and get to like hang out with my friends for a living.
But to not be able to participate or to like skate in general, like the only reason I went this route was so I could skate more.
Like in all seriousness, the reason I wanted to do YouTube was not because I thought I was going to make decent money, which like I’m making enough to pay my bills. I’m It’s awesome.
But it was just to be able to skate more. And now that I can’t, it like makes me want to like just stop. Like it I I’m not going to. It’s just this is just like an overreaction, like an emotional knee-jerk reaction of like I want to quit YouTube.
I want to move back to the East Coast. I’m just going to go get a normal job again cuz it’s it’s too frustrating to be around all of this great time going on behind me on this curb and to not be able to do it, which is a reality that everyone faces when they get too old.
You know, their body gives out or they have a serious injury or something like that.
But the fact that a [] tick bit me and that’s what’s causing this to where I feel like I could skate.
Like sitting here right now, I feel like I’m I could go out there and do some flip tricks, but the second I start doing any physical activity and the blood starts pumping, I immediately start shutting down. Like my body just won’t let me do it.
Like, not only is my fatigue super high and I get tired fast, my equilibrium is so off. I feel like a beginner. Like, it’s it’s crazy, dude.
And it sucks that like, you know, Ben’s out here, you know, he’s in from Canada. This the dude solo skates here with a friend.
Like there there’s all these people that I want to be like having fun with.
And I’m just in such a bad mood. I’m sitting in my car as they skate around me cuz I’m too angry, like really really angry to like have a conversation with someone and not be some like bitter brat about, oh, like I can’t skate right now.
And I do think that I have valid reason to be upset. I do. But it’s like I don’t want to ruin someone else’s time with that.
So, I’m gonna sit in here for a little bit. I’m gonna try to calm down. I’m gonna go back out there and continue skating and filming with everyone.
I feel like this is probably a separate video than this what you know what you’re seeing. But yeah, like totally I just [] absolutely took thousands of dollars of worth off of my car just now.
Like just beat the [] out of it. Um, dude, like mental breakdown in front of everyone, which, you know, it’s I can’t help but feel guilty to have like such a extreme reaction when in actuality I still have a very good life, you know?
Like I’m not living paycheck to paycheck for the first time in my life, you know? But it’s like, god damn, dude. I’m so sad. Like I want to like I legitimately feel like if I sat here and dwelled on it for just a couple minutes and thought real hard about it, I would like legitimately cry.
And you know, and I know a lot of people probably like, “Dude, this is not skating.” Like, big deal. You You’ve not skated way longer than that when you roll your ankle.
The reason that it’s different is because I know that this is with me probably for life.
And that the the last time that I had a flare up this bad, it was it was over two months that I couldn’t do anything.
And it’s not just it’s not just that I can’t skate. Like the brain fog is so next level. I can’t concentrate. Like I couldn’t edit videos because my brain was so like [] up.
I can’t daydream properly. I can’t sleep good. It’s it’s like all of the uncomfortabilities of being like very sick and a flu and a fever on top of like just not being able to like be yourself in your own head.
Like I feel so foreign into my own thoughts. It’s like, oh man, it’s it’s frustrating. It’s very very frustrating.
But as I’m talking about this, uh, it’s definitely calming me down cuz when I say these things out loud, it does make me realize like, hey, yeah, like at least you get to do this stuff, you know, and at least like I’m aware that things are good.
I these are just an emotional reaction. It helps bring me back to reality. And I’ve said this in past videos, like even if you don’t do YouTube, you should talk to your phone and record yourself because it forces you to kind of have a conversation with yourself because that’s what I’m doing right now.
I’m having conversation with myself in front of you. Um, not talking myself down, but talking myself through how I’m actually feeling and stuff like that. And I think there’s a lot of value in that.
I think I think it is extremely therapeutic to hear yourself out out loud because when you hear it out loud, it’s not that it’s coming from another person.
But speaking out loud, I think puts you in a position with intent to where you’re not hidden behind your… emotions and your own thoughts.
Cuz when I think about things, it’s not like I’m just thinking about this thing very specifically. It’s a very broad feeling.
But when I’m saying things out loud, it makes me get very specific and detailed about what I’m trying to portray or what I’m trying to get across.
And I think in those niche intricate thoughts is where you can sort of sift through and see how you actually feel.
Also, I drool a lot now. I don’t know if you’ve been noticing that. I drool a lot when my lime flares up.
Oh man, but my neck feels better and my knees don’t hurt right now when lime flares up a lot.
I get like really swollen knees. I’m like, they feel fine. Oh man, I got to go get a tail light now.
Dude, this sucks. It doesn’t It’s fine. It’s better than it’s been. It’s just I I keep having this over-the-top worry that this is the end. Like I’m not going to be able to skate at normal ever again.
And it’s like, all right, I’m going to sit here for a couple more minutes and I’m going to go hang out with everyone.
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Jaybee00 said:
I wonder if some celebrities with ME/CFS declare that they have (post-infection) Lyme disease because it is a politically/culturally more acceptable diagnosis.

At least in the news article posted above I didn’t see JT mentioning his bullseye rash from his tick bite, etc.
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I don't know. In the hierarchy of things medical professionals hate, there's us, many levels underground, and many, many levels down there is chronic Lyme. It gets some of them spitting mad where we just get bored indifference. Somehow. It's actually really odd and unhinged.

On the other side, having fuck you money like Timberlake has makes them not really have to care about any of this.
 
rvallee said:
I don't know. In the hierarchy of things medical professionals hate, there's us, many levels underground, and many, many levels down there is chronic Lyme. It gets some of them spitting mad where we just get bored indifference. Somehow. It's actually really odd and unhinged.
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It also makes medical professionals automatically discount post-tick bite meat allergies, because anything tick related is seen as bogus. And meat allergies can be tested for with a blood test, it's not in the same "there's no biomarker" field as the rest of the post-infection/insect bite stuff.
 
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