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    Major Lazer Power BlazerStassa Edwards
    3/29/16 1:47pm

    i’m not an MD, and the only person i’ve ever known with chronic lyme was also a pretty serious drug addict so IDK what’s real or not.

    what i do know is yolanda is a terrible spokesperson and if i had chronic lyme i would be PISSED she is being ‘the face’ of this on national tv

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      SkyNetMajor Lazer Power Blazer
      3/29/16 1:57pm

      I’m currently suffering from Lyme. I suppose you could call it chronic since the initial round of treatment didn’t take care of it.

      That said, it’s very real and it has totally screwed my life up.

      I would much rather have Neil DeGrasse Tyson as a spokesperson but at least Yolanda is raising awareness which will hopefully bring about positive change in Lyme treatment, research, and detection.

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      UmeboshayyMajor Lazer Power Blazer
      3/29/16 2:02pm

      Why is she a terrible spokesperson for chronic Lyme? I watch real housewives and I not only appreciate her experience with Lyme but I feel sick when the women attack her for faking it and I think she's done well in the face of all that harassment.

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    eye-surgeonStassa Edwards
    3/29/16 2:43pm

    Most MDs, myself included, would agree behind closed doors that chronic lyme, fibromyalgia, and chronic fatigue syndrome, as they are commonly diagnosed, are all different manifestations of depression. But people don’t want to hear that they’re depressed, and people get angry when you point out this truth. As the comments to follow will likely illustrate.

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      mimaweye-surgeon
      3/29/16 2:50pm

      Yes, the problem could not possibly be something you guys just haven’t developed a test for and figured out yet, right? Instead it’s a different vague problem that you know how to throw pills at...but you aren’t sure which pills will work for which people, or if the side effects will be worse than the problem you are treating.

      Snarkiness aside, I know people who have been diagnosed with depression for whom treatment with antidepressants has been very successful. For other people, the diagnosis and the treatment have not. So maybe depression really is not the answer for every unexplainable symptom.

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      Throwin a Boba Fiteye-surgeon
      3/29/16 3:13pm

      Hence why Wellbutrin was prescribed for Fibro for yeeeeears....maybe still idk

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    BlondeGoddessStassa Edwards
    3/29/16 2:22pm

    Thyroid disorders (Graves disease, Hashimoto’s, to name two) are very real, and easy to detect (a simple blood test), so don’t know why that’s being lumped in with ‘diseases and disorders that many claim they suffer from, yet are unrecognized by evidence-based medicine’. Makes me question the rest of the article (which I haven’t read beyond the sentence above).

    ETA I’m actually feeling upset about this! I’ve had Graves for 15 years, it has seriously impacted my life and if it goes untreated you die. DIE. I have arrhythmia because of it, eye trouble, and indirectly it caused a minor stroke. Not to mention the chronic fatigue etc, but hey, I don’t want to complain too much about my invisible illness.

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      deerlady83BlondeGoddess
      3/29/16 2:31pm

      I’ve it, too. It’s under control but get there was rough and scary.

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      crankylittlephotonBlondeGoddess
      3/29/16 2:40pm

      I read that as describing the people who have no demonstrable laboratory abnormalities that still claim to have hypothyroidism. I know several people like this, some of whom use “natural” thyroid supplements which are supposed to boost energy and promote weight loss.

      It’s actually a really great article.

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    crankylittlephotonStassa Edwards
    3/29/16 2:10pm

    To have great pain is to have certainty, to hear that another person is in pain is to have doubt.

    Fantastic piece, Stassa. I work with some pretty incredible doctors every day, and none of the infectious disease specialists believe that chronic Lyme is a real entity. As a scientist, I have trouble believing some of the claims made by these advocacy groups. As someone trained to practice evidence-based medicine, it’s extremely hard to endorse treatments with no proven benefit. But, as someone with an “invisible illness,” I’m trying to be more empathetic. I’m going to print out the above quote and tape it to my desk.

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      randilynisFINDILYNcrankylittlephoton
      3/29/16 2:16pm

      That quote is brilliant in its simplicity.

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      horseasaurusrexcrankylittlephoton
      3/29/16 2:20pm

      I’m sure that these women are suffering. Whether their efforts are best spent chasing the specter of chronic lyme which (probably) isn’t real, is questionable. I too suffer from an “invisible” chronic pain disorder (chronic migraines) so I get the “you don’t look sick” thing, but I just can’t get behind long-term antibiotics for many many reasons.

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    MorganESAStassa Edwards
    3/29/16 1:57pm

    You don’t need to be an M.D. to see that Yolanda almost certainly does not have lyme. If I had to hazard a guess, I’d say it’s depression (which can absolutely manifest as physical symptoms) being exacerbated by menopause. It also seems like she’s being taken advantage of by a lot of people selling snake oil cures.

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      IHateGoatsPartDeuxMorganESA
      3/29/16 2:28pm

      She also insists that she broke her back giving birth due to a potassium allergy (literally impossible for a human to be allergic to potassium). She’s not exactly reliable.

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      thetallblonde loves twinjaMorganESA
      3/29/16 2:29pm

      You don’t need to be an M.D.

      no! you just need to be an anonymous internet commenter who knows more than scientists!

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    stoprobbersStassa Edwards
    3/29/16 2:30pm

    Lyme isn’t a joke, and whether or not “chronic Lyme” is real, all Lyme, and especially late Lyme, need significantly more attention and improved testing, diagnosis and treatment standards. My sister’s life has been destroyed by late Lyme — 10 years before it was diagnosed (she kept taking tests that would be positive, then negative, and so her doctors all said they were false positives), it has destroyed her joints, completely fucked with her mental health, and the treatment for it — similar to Hanna’s: weeks with a PICC line, a little break, weeks with a PICC line, IV antibiotics for six months, I believe — killed the insane infestation of bacteria while utterly decimating her immune system. As the infection grew more entrenched and her symptoms both more varied and more pronounced, doctors dismissed it as depression, as hypochondria, as anything other than possibly a mistake in diagnosis by them. She is four years younger than me, still her 20s, and often feels like her life is already over. That is bullshit. I am FURIOUS on her behalf.

    In the years - YEARS - since her diagnosis and intense treatment she’s improving slowly but steadily, but remains plagued by chronic pain, chronic fatigue, and depression. Whether or not “chronic Lyme” becomes an official diagnosis, there should be no doubt that such severe infections leave bodies and minds with permanent damage. Every time she gets sick she goes into a panic thinking the Lyme is back (it appears to be gone but there is no way to guarantee that the bacteria isn’t hiding somewhere, waiting to come out again when it feels safe). It’s horrible. So while I’m not about to be on the side of chronic Lyme conspiracy theorists, I am absolutely sure that the CDC and IDSA need to reexamine and rework their standards for diagnosis, treatment, and aftercare. This is real. I’ve seen it up close and personal. And it is horrible.

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      SkyNetstoprobbers
      3/29/16 3:31pm

      Word. Really well said.

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      stoprobbersSkyNet
      3/29/16 3:33pm

      Thanks. What happened to my sister is a tragedy and an injustice. I will always, always have her back on this.

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    deerlady83Stassa Edwards
    3/29/16 2:04pm

    I’m not sure if chronic Lyme is real or not. I live in an area with a lot of ticks and we all fear Lyme. One of my aunt’s dogs died from complications of it. To be honest, I've heard of anyone suffering from chronic Lyme here. I'll have to ask around.

    I do have an invisible condition that requires daily meds. It did take awhile before it was diagnosed. At one point, my parents thought I had a brain tumor. It's under control and I manage it.

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      fondue processdeerlady83
      3/29/16 2:12pm

      I’m from a tick-infested location as well (and have heard that due to the mild winter, this year we’ll have more than usual!) and while my mom has had Lyme 5x (and I’ve had it 2x), I only know of one person with what sounds like chronic Lyme. When I was in middle school my friend’s mother had Lyme and even after treatment she ended up quitting her job because she just couldn’t work anymore due to chronic exhaustion, pain and mental fogginess. I remember her being home all day and sleeping on and off, only occasionally coming downstairs to absentmindedly saying hi to us kids. They had to get a live-in nanny.

      I think it did eventually go away after a few years, but I can’t remember ever seeing someone acting that way before in my life.

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      WerkwerkwerkisaBurnerfondue process
      3/29/16 2:30pm

      Yeah, I believe because the behavior of the one person I’ve ever known who was diagnosed with chronic lyme made no sense otherwise. She was bitten before starting her sophomore year at college, super-high achiever, majoring in chemical engineering, always active and very responsible. She failed two classes that semester and very nearly lost her full ride. She used to call me crying sometimes because her joints hurt so bad, she couldn’t make herself get out of bed.

      After about two years of seeing a "Lyme-Literate" doctor she improved greatly and functions quite normally now.

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    scowly brow spinsterStassa Edwards
    3/29/16 2:13pm

    Does anyone ever get the Epstein-Barr or Chronic Fatigue Syndromes any more? What about the full environmental allergies that used to be a thing?

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      Mental Iceberg's Burnerscowly brow spinster
      3/29/16 2:18pm

      That’s what I was wondering about.

      I only know of CL from Yolanda, but every ailment she says she has reminds me of someone that I knew in the 80s that had Epstein-Barr.

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      BlondeGoddessscowly brow spinster
      3/29/16 2:25pm

      Mono is a manifestation of E-B, so yeah, I know loads of people who still get that.

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    feldaStassa Edwards
    3/29/16 2:18pm

    As a med student, I’ve already seen enough patients coming in requesting to get checked for Lyme for all their vague symptoms. Welcome to the new gluten allergy.

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      mimawfelda
      3/29/16 2:43pm

      I think in fairness to people, they can be aware that they are experiencing pain or discomfort that the medical community is unable to diagnose. I actually spent much of my mid-t0-late 20s convinced I had a thyroid problem because I had every classic symptom you could have...but every test or every type came back negative. It was not until I overhauled my diet to (almost entirely) remove gluten based on food allergy testing and an elimination diet (ordered by my allergist and gastroenterologist after surgery to alleviate symptoms of an autoimmune reaction) that I finally started to feel “normal” again. Eating gluten in “normal” or “recommended” (ugh, God, that fucking food pyramid) clearly affects me very negatively. However, during that surgery they confirmed that I am not celiac. So yes, maybe the medical community has not yet caught up to having the tests to diagnose the pain and label it, but it does not mean people are not living it.

      On the whole, I find Yolanda insufferable because she uses her pain to make excuses for her shit behavior, but I am not going to judge people who say they are hurting and are simply trying to find a way to fix that. It can be a very desperate, damaging situation.

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      twoifbyseefelda
      3/29/16 2:50pm

      Right. And 90% of people who think they’re allergic to gluten aren’t. Just make sure you don’t dismiss the 10% who are suffering from real symptoms because of all the delusionals. Something to keep in mind as your studies progress

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    Henry PorterStassa Edwards
    3/29/16 2:06pm

    I read some of this article before I got bored with it. It’s well written, but I just don’t care.

    What’s the difference between Lyme’s Disease and Chronic Lyme? It never goes away, you can just treat it for the rest of your life. Actor/musician John Lurie has been suffering with it for years, he doesn’t do much these days as a result.

    I was once bit by a tick years ago, which I found on me while showering after a camping trip. My father, who is in the medical field, pulled it out and did some research, deemed it wasn’t a lyme carrying tick. All these years later, I’m wondering if he was wrong as I am more mellow than most folks around me. Though, that could be from my chronic alcoholism and lack of sleep.

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      BlondeGoddessHenry Porter
      3/29/16 2:27pm

      I met Lurie maybe ten years ago, it was the first time I heard about chronic Lyme - he had a shitload of neurological complaints.

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      thetallblonde loves twinjaHenry Porter
      3/29/16 2:28pm

      What’s the difference between Lyme’s Disease and Chronic Lyme?

      maybe read the rest of the article.

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