Avril Lavigne diagnosed with Lyme disease

[Misfit Toy]

I have several friends with Lyme disease who think I'd be better off being diagnosed with Lyme than CFS. They feel that Lyme has a treatment, at least and CFS doesn't.

Ironically, even with the treatments they've done for Lyme, they are all quite sick....so I don't get their rationale.

I don't think it's far more tough being a famous person with Lyme. Especially in CA, they are taken seriously and more importantly, they have the money to go to the best doctors. Again, they can fly all over for treatment. Money is no object. CA is way more progressive when it comes to illness, at least when I lived there. People believed in CFS when I was there.

When you are a celebrity, they don't hear the word, "no" too much.

 

[soxfan]

I subscribe to People and just received that issue.. I didn't think the article had much information in it at all. It didn't really talk about the symptoms she experienced. That is what I was curious about because I was diagnosed almost 10 years ago and am still stuck with chronic nerve pain and fatigue.

I thought I was dying too but the doctors still didn't believe me...even though I had never been sick and suddenly became extremely ill overnight. I am also not sure why the magazine call it a secret health crises...why keep it secret especially when she had a diagnosis.

I really wish I could have stayed in bed when I was at my worse but had to get up and go to work...not ever sure if I would make it through the day. I felt that I had to keep going because the doctors told me to (before diagnosis) and they made me totally question myself if I was sick or a crazy 40 year old woman...

Hopefully she was treated in time so that she can resume her normal life as I never will be able too...

 

[duncan]

Misfit Toy, as far as research goes - and I suppose by extension clinical visits - I have to agree with your friends: I think if someone has a choice, it is wiser to come at either disease from a Borrelia vantage.

Why? Because there is a known pathogen. It's tangible. Identifiable. You can see it, or at least you can see what it stirs in your waters. Follow the pathogen trail, and it (eventually) should come up with something concrete, even if it's merely remnants or debris or a corrupted immune system. And should it be a corrupted immune system, by doggedly sleuthing Bb and watching and documenting how it does this, we can deal with it more effectively. If it's persister Bb cells, then we can marshal our talent and maybe craft some effective abx therapies for all stages.

Even better, there are researchers assigned to this very task (or at least, that is their charter) These researchers belong to teams and organizations whose stated goal is to reveal all the dirty little secrets of Borrelia and all its friends and tbd cousins, and they work in places like the NIH and CDC. And those researchers have associates who study vectors like ticks, and who contribute and levy additional pressure against complacency and even dogma. They help crystalize a process that theoretically should be constantly moving forward.

But 20 to 30 years of gridlock due to a small group of individuals have virtually frozen this process. The result is pretty much the same as we experience in the ME/CFS research community. Even with the pathogen in hand, walls contrived by dogma and a CYA mentality and greed and ego, like skyscrapers have been risen to block progress.

That is frustrating. Even outrageous.

Still, there really is some merit to the argument that it's a lot better to have a known pathogen in hand - at least on paper - and have the potential to dissect it, to follow its every step, and to eventually see how it is it does what it does. We just need a platform of science free from scientists who have checked scruples and ethics at the door. We need scientists who engage that discipline as they were meant to: Bias free, and with fact and truth as their common and singular goals.

 

[Lou]

Actually a pretty good report overall. Thanks, Wayne.



Not to sound like your mother lol, but not advocating isn't necessarily the wrong thing for many reasons, the first of which is protecting one's health. Sometimes it's also important to protect one's reputation in order to continue making money, and let's face it, Lyme and ME/CFS aren't exactly reputation friendly yet.

She doesn't seem the one all that worried about her reputation, appears more like a 'this is what you get' type, which is part of her appeal, at least for me.

Sometimes it's important to simply do the right thing, reputations fall where they may. I hope she becomes a force that leads to better understanding, and even perhaps better treatment for Lyme.

 

[Dufresne]

The lay public is less judgmental of Chronic Lyme because there's a pathogen. Doctors are less judgmental about ME/CFS because it's recognized. That's been my experience in Canada.

 

[5150]

my cardiologist , about 40yo, shared with me that she has Lyme, and she looked TIRED. People are coming out with their LD & Don't seem hesitant about it. I'm not certain an ME patient could successfully do that. If I showed the degree of fatigue that she had, it would be worse for me... some sort of ostracizing would result, i'm sure.
This is something each of us is going to have to consider as we go more public in getting funding. I suppose it will be a case by case individual decision as to what you want to say and represent. Honesty is the best policy? who the heck knows?

 

[worldbackwards]

I was watching 'The Punk Singer' the other day, a documentary about 'riot grrrl' singer Kathleen Hanna, and she was talking about her experience over the last few years with late stage Lyme disease. You got the impression that she'd been called all kinds of crazy (told she was having panic attacks in the E R, etc), so I don't think that it's something that you can get away from.

It was clear that she's got plenty of money ( she's married to one of the Beastie Boys) but given that she had to cancel her tour here last year, I don't think it's done her that much good. Still, it's good that she mentions it in the media and spreads awareness as far as she can - she's never been someone to run away from tough causes.