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Ashley Olsen Chronic Lyme Disease Diagnosis (Olsen twins)

Discussion in 'Lyme Disease and Co-Infections' started by Antares in NYC, May 11, 2015.

  1. Antares in NYC

    Antares in NYC Senior Member

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    Since Lyme disease is now the fastest growing disease in the USA, it was meant to happen that celebrities --just like the rest of us-- would fall victim to this horrible mess of an epidemic. The last one is Ashley Olsen, of the Olsen twins (Full House):
     
    Last edited: May 11, 2015
  2. Antares in NYC

    Antares in NYC Senior Member

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    For those counting, a number of celebrities have come out in the last couple of years, sharing their chronic Lyme disease horror stories. These include:

    Avril Levigne
    (musician), Alec Baldwin (actor), Jamie Lynn Sigler (actress, The Sopranos), Amy Tan (author), Daryl Hall (musician, Hall & Oates), Yolanda Foster (Real Housewives), Kathleen Hanna (musician and wife of Adam Horowitz of Beastie Boys), Parker Posey (actress), Karen Allen (actress), Jennifer Capriati (athlete, tennis), Rebecca Wells (author).
     
    Last edited: May 11, 2015
  3. SOC

    SOC

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    I wonder if some fraction of these people have ME instead of chronic Lyme (or ME and chronic Lyme), but get a chronic Lyme diagnosis because it's slightly more socially acceptable, or their doctors don't know about ME.

    In any case, whatever it is, it seems to be growing rapidly.
     
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  4. Antares in NYC

    Antares in NYC Senior Member

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    You are right, it would be interesting to see. I have been diagnosed with both, and two different doctors explained that my ME/CFS problems likely stem from the untreated Lyme. All Elisa and PRC tests came negative... but years later I had a WB and an Elispot tests that were positive for Lyme, even CDC positive.

    But as you say, who knows what it is that we have at this point. Whether it's ME, Lyme or both, patients are first told it's all in their heads, and then to go away.

    I agree with you this is growing exponentially, which may have prompted the CDC to update the number of reported cases ten-fold.

    In any case, here's a standing ovation to the CDC, NIH, and IDSA for containing the epidemic and treating the growing number of exposed victims with such humanity and compassion... </sarcasm>

    [​IMG]
     
    Last edited: May 11, 2015
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  5. msf

    msf Senior Member

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    This is great news! We need celebrities getting Lyme Disease! Ok, I was joking, as I wouldn't wish it on anyone, but for the other patients, the more exposure the better.
     
  6. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    The reason mecfs is not known to people is nobody famous has got it. If Katie Couric or Brad Pitt or Julia Roberts gets it, - then, all of a sudden, mecfs is a real illness! Not that I would wish this on anybody, but we need a highest profile celebrity to acquire this illness.

    Though Angelina Jolie made the film Unbroken out of Laura Hillenbrand's book, it is noteworthy that she has not done anything so far for mecfs. Amazing!
     
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  7. Valentijn

    Valentijn Senior Member

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    It's inappropriate to demand that someone take on ME/SEID as their pet project - especially when they are already doing a great deal of charity work in other areas.
     
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  8. kisekishiawase

    kisekishiawase sad

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    when i found out i was kind of surprised :eek:
    i saw the news where it says avril was suffered cause doctor said shes crazy and she had to learn about it on her own she said shes never feel depressed but because of it being sick and scared for life was really horibble

    sounds familiar but couldnt believe it could happen to them.

    well i hope this lyme, cfs, me will get more attention around the world and will raise awareness, more research, etc. though i think they will only acknowledge lyme but not really the dark side of it. and for cfs, me i dont know the possibility seem not that high unfortunately :( unless if more famous people and media expose it(me,cfs)
     
    Last edited: May 21, 2015
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  9. duncan

    duncan Senior Member

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    The addition of someone famous to our ranks is important. But obviously it achieves even greater import when the star has solid signs of a pathogen in hand, as can and does happen with Lyme.

    Lyme gives the sufferer potentially more leverage to argue the merits of a contested disease. All one needs to demonstrate is antibody production - and suddenly you have a mountain of proof compared to trying to defend an ME/CFS diagnosis.

    Still, huge hurdles present. Dogma against persistent Lyme is entrenched. The polemics aren't subtle either; this is really a war. It is being waged in the courts, from the balconies of State Legislatures, in the harsh and demeaning narrative of research studies, and in rural family doctors' exam rooms.

    As someone who has argued the case for both ME/CFS and for Lyme, I can say without hesitation that I much prefer to come at this from the Lyme flank precisely because I have laboratory proof. Yes, proof that is contested and has been dismissed by some hardliners, but my Science is every bit as good as theirs, and as articulate and telling.

    It's the ability to debate and convince and dissuade on a personal level, that I like about Lyme. Since I have causal data from Lyme, if Lyme triggered my ME/CFS, then Lyme researchers better follow that trail because that's their friggen job, even if the common denominator is only something like nk cell activity. If it's Lyme, and "only" Lyme & company, then my Borrelia-specific WB's still argue my case better than if only equipped with the latter. Either way, Lyme is almost my equalizer, in a war in which I, and people like me, seem often hopelessly outmatched by the other side.

    With each person that has similar evidence, a chorus is formed and the sound of their arguments is harder for the dogma-drones to drown out.

    So, yeah, when a big name is added to the arsenal, it helps, because they bring a voice that has far greater reach.
     
    Last edited: May 21, 2015
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  10. chipmunk1

    chipmunk1 Senior Member

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    I think more and more people realise that they have been sick for a long time and don't believe that "it's all in your head" crap anymore. Now they are looking for answers, not victim-blaming.
     
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  11. Daffodil

    Daffodil Senior Member

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    a bunch of celebs reportedly have CFS/ME, including Cher, Flea from the chilli peppers, and that director something Blake who was married to Julie Andrews..but i think he died.

    Its strange that the Olsen twin isn't doing well....they are worth almost 1/2 billion! Wonder if she got some bad advice as to which doctor to see.

    Would be nice if celebs did a little more for the CFS/ME community, I agree. For whatever reason, it seems like they want to keep the whole thing private.
     
    Last edited: May 21, 2015
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  12. Valentijn

    Valentijn Senior Member

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    Probably because 1) they can hide it in milder cases of ME/SEID, and 2) having ME/SEID makes them look unreliable to employers/directors. So coming out and taking it up as a cause involves taking an optional risk which might have a big impact on their career.

    Whereas with Lyme, by the time they figure out what it is and come out of the closet, it's gotten pretty bad and they can't hide it anymore anyhow. So they're probably already not working, and have no prospect of working while they are that ill. Yet they can be treated for neurological Lyme and then be (perceived as) cured and completely hire-able again, whereas the ME/SEID patient is perceived to be an ongoing risk even when the disease is being adequately treated or is in remission.
     
    Last edited: May 22, 2015
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  13. Daffodil

    Daffodil Senior Member

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    yes, good point. i also wondered if they kept it quiet in case it ends up being contagious...although lyme might be contagious too and i dont know if you can be totally cured.
     
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  14. Daffodil

    Daffodil Senior Member

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    i just read somewhere that ashley olsen is trying exercise and physical therapy...that could be the problem right there.
     
  15. Valentijn

    Valentijn Senior Member

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    Yeah, I don't think that's the cure for Lyme disease, and would doubt it helps at all. An exercise program even with non-ME Lyme is probably about as ill-advised as doing workouts with the flu.
     
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  16. duncan

    duncan Senior Member

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    I want to add - for those that are not aware - that individuals that continue to test sero-positive for Lyme, ie, CDC 2 Tier compliant, following IDSA-recommended treatment, are dismissed as false positives by the vast majority of IDSA guideline followers. This despite seemingly contrary papers, written by the same fraternity, that state that titers should decline following treatment.

    The position of such individuals is that a couple of early studies by vested concerns indicate that a certain portion of those that were infected will always test positive, even after recovery from the disease.

    It may be relevant that those studies of which I am aware that made those claims were done less than 25 years after the discovery of the agent of Lyme, so I'm a little uncomfortable with how they can make them.

    Moreover, I have read a couple of those studies, and I'm not quite satisfied on what they base "recovery".

    Regardless, there is resistance to any claim of persistent infection post treatment, and I suspect all of these stars are experiencing negative feedback from some quarters, despite their fame.
     
    Last edited: May 21, 2015
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  17. Daffodil

    Daffodil Senior Member

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    @duncan ..but you would think the rich celebs would see the best private lyme docs out there, at the outset..?
     
  18. PennyIA

    PennyIA Senior Member

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    Yeah... unless her doctor is like mine and thinks that advanced lyme is all in the head - ergo, doctors who are successfully treating it are quacks, etc, etc, etc... suddenly they start treating as if treating for depression or deconditioining - and then you get recommended to try exercise and physical therapy...

    So, money or no? Doctors are still doctors and have their own belief systems.
     
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  19. duncan

    duncan Senior Member

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    Daffodil, critics will say they are buying a diagnosis, especially those doctors PennyIA just alluded to.

    Even if they are fortunate enough to land an early diagnosis, anywhere from 10% to 20% of early stage sufferers are not helped by abx, according to some reports.

    If the diagnosis comes after Borrelia disseminates, then the challenges of receiving successful treatment rise significantly, regardless of financial consideration and Lyme literacy of the treating clinician.
     
    Last edited: May 21, 2015
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  20. Sidereal

    Sidereal Senior Member

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    I think late-stage Lyme disease and ME/CFS are rare kinds of conditions where even having half a billion dollars won't get you very far treatment wise. I often ask myself what I would be doing differently if I won the lottery and the answer I come up with is nothing, except I would hire people to clean and cook for me.
     
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