The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Avril Lavigne diagnosed with Lyme disease

Discussion in 'Lyme Disease and Co-Infections' started by Apple, Apr 1, 2015.

  1. Apple

    Apple Senior Member

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    "It wasn't exactly the way she imagined spending her 30th birthday.

    When Avril Lavigne went to Las Vegas with a couple girlfriends last October to celebrate the milestone, she felt like doing anything but partying – in fact, she'd been feeling terrible for several months, but the doctors she'd seen couldn't pinpoint exactly what was wrong with her.

    "I could barely eat, and when we went to the pool, I had to leave and go lie in bed," she tells PEOPLE in this week's exclusive cover story. "My friends asked, 'What's wrong?' I didn't know."


    Shortly after, following months of feeling lethargic and lightheaded, the normally energetic singer got her diagnosis: she had a severe case of Lyme disease.

    "I had no idea a bug bite could do this," says Lavigne, who believes she was bit by a tick sometime last spring. "I was bedridden for five months."

    More at the source. Wasn't sure if I was allowed to copy and paste the entire thing.

    http://www.people.com/article/avril-lavigne-lyme-disease-bedridden

    Seems like she's on the up now! I wonder what her treatment regime was/is..
     
    Last edited: Apr 1, 2015
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  2. Misfit Toy

    Misfit Toy Senior Member

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    I'm very glad that she got well or is getting better but at the same time I feel like isn't it amazing what money can do? You rarely see celebrities stay sick for too long. They can have their blood filtered, fly to Germany for stem cells, and have anything they could want or desire to do with the amount of money they have and good for them!

    But, I am jealous!
     
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  3. Martial

    Martial Senior Member

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    Many of them find the money does not get them well either, good treatment can happen very cheaply as well. Yolanda Foster spent over 500,000 dollars trying to treat her Lyme at various clinics. Personally I feel people that run a lot of those places take advantage of patients with money. You should never have to pay ten grand or more just to have some treatment protocol and see a doctor (out of pocket because insurance will not cover). Money always helps of course too, better then going bankrupt treating stuff. I just wanted to give the flipside.
     
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  4. soxfan

    soxfan Senior Member

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    I am just thinking maybe doctors believe the celebrities when they say they are sick and something isn't right. My doctor didn't believe me and I spent over 2 years trying to get a proper diagnosis for Lyme and Bartonella. So now I have been spending the past ten years fighting this disease and I feel it has also caused a lot of CFS symptoms for me as well....

    I would have gone into debt if it would have helped me get better but without a proper diagnosis and not just a "you are depressed" or "need a vacation" then all the money in the world wouldn't have helped at that time....
     
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  5. Wayne

    Wayne Senior Member

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  6. Martial

    Martial Senior Member

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    “According to the CDC, 10 to 20 percent of people who are treated early may get post-treatment Lyme disease,” Besser said.

    After a 2 to 4 week course of antibiotics, people with the condition still have lingering Lyme symptoms including fatigue, pain, and muscle aches. Symptoms can last for 6 months or more, the agency said.

    The CDC goes on to say that “chronic Lyme disease” is sometimes used to describe symptoms in people who have no evidence of a current or past Lyme infection but the agency prefers to avoid this term because there isn’t enough evidence to support it as a true scientific diagnosis."

    This false and outdated information is disturbing, as well as even possibly deadly to those with the infection.
     
  7. redviper

    redviper Senior Member

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    Hopefully she will do the right thing and become an advocate for the Lyme community moving forward.
     
    justy likes this.
  8. SDSue

    SDSue Southeast

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    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.
     
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  9. Misfit Toy

    Misfit Toy Senior Member

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    @Martial -if you watch the Real Housewives of Beverly Hills, she's a pretty active person, that Yolanda. Yolanda Foster works out, runs and wears LuluLemon. She flies all over the place and she lives a pretty good life for someone with Lyme disease. I agree with you that not all the money in the world can make people well but it sure can help.

    I have a cousin who is a celebrity. He's worth over 100 million and he has flown to Germany for stem cells. He had hepatitis C and cured it in Boston by having his blood filtered.

    Every day people can't do that. He's always telling me that I need to go to Germany for stem cells and the last time I told him, "hey, I'll go if you pay!"

    Yes, my cousin has nine lives all due to money.

    He always asks me, "How's that WTF syndrome?" Lol....I have to laugh at that one. It's a whole lot of WTF...that's how it is!
     
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  10. August59

    August59 Daughters High School Graduation

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    WTF would be a good interim name!:jaw-drop:
     
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  11. Misfit Toy

    Misfit Toy Senior Member

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    @August59 -perhaps we should have it as a possible name change?!

    In the New York Times... "The disease that was once called Chronic Fatigue Syndrome, or ME and then SEID has now been renamed, WTF Syndrome. Patients are happy with this name because it pretty much says it all."
     
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  12. catly

    catly Senior Member

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    @August59 @Misfit Toy

    "WTF would be a good interim name!:jaw-drop:"

    In the New York Times... "The disease that was once called Chronic Fatigue Syndrome, or ME and then SEID has now been renamed, WTF Syndrome. Patients are happy with this name because it pretty much says it all."


    Love It!

    :D:lol::rofl::D:lol::rofl:!
     
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  13. duncan

    duncan Senior Member

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    If we can rely on the accuracy of the reports, she had/has late stage Lyme. The media needs to be educated on the distinctions. These aren't even nuances; they are as important as Stage three vs stage one cancer.

    I hope she is cured. Time will tell.

    But WTF syndrome is a keeper. :)
     
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  14. Folk

    Folk Senior Member

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    Well Laura Hillenbrand is famous and still sicker than most people (even than most people with ME/CFS/SEID/WTF)...
     
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  15. CantThink

    CantThink Senior Member

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    If I was your cousin I'd have flown you over to at least try the treatment if you wanted to try it. I had a friend who was a death's door in her 20s from cancer even after having everything removed - she was wealthy so flew to Germany and had stem cell... Was cured. Back to her medical studies and last I know she was a fully qualified doctor. Money does open up options IMO (whether or not they should be so expensive is another matter).
     
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  16. NK17

    NK17 Senior Member

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    @Misfit Toy awhh you made me laugh so much and I'm still laying in bed hurting all over after a night of sleep ...

    WTF is absolutely a keeper as @duncan well said!
     
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  17. Misfit Toy

    Misfit Toy Senior Member

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    @NK17 -I am so glad to make people laugh. "WTF Syndrome" it is. I think that is what I will refer to it on here. WTF.

    @CantThink -I love my cousin, he is extremely talented but a true narcissist. He doesn't even help out his sister. It's crazy. This guy...everyone knows him. He is...pretty famous. None of us in the family understand and we don't ask for anything. I don't ask for anything that someone is not willing to give.
     
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  18. 5150

    5150 Senior Member

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    There is no doubt about the stigma that goes with "CFS" / ME. You can be shunned by 'your friends', etc. 'your co-workers. And you will lose work, if you have any strength to work that is.

    So yes, let's take the more socially acceptable way: I can say it's Lyme and all negative thoughts re "CFS" & I are gone. Magic. I know people are doing this. Not saying anything against the true LD community. Just that, at least a CFS'er won't be looked at as one of "those crazies" anymore, because it's Lyme Disease, and that's more ok. Treat the ME though.
     
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  19. valentinelynx

    valentinelynx Senior Member

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    Really? I'm more afraid to tell people I have late stage Lyme than that I have ME/CFS (WTF disease!!!). I think "Lyme" has a greater "crazy" factor at this point.
     
    celeste likes this.
  20. Martial

    Martial Senior Member

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    I can attest that it really depends on whom you speak to. I have a lot of friends from back East, as well as where I originally grow up and the exented family. They understand how serious and complicated it can get I had several cousins contract it too. One developed bells palsy and got really ill as well. Other people get very opinionated and tell you off like you are crazy, usually ill informed doctors.

    Some people do a quick google search and because of the CDC's vagueness with the "chronic form" they just say its in the head, question peoples mental state, etc. I imagine its far more tough being a famous person with Lyme, they already get slammed from publicity for every little nitpick thing. Those magazines have a sick twisted humor of wanting to watch famous people crash and burn for some reason.
     
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