Thursday, August 23, 2012

My Story of The Big Brush Off

Yesterday, I had over a dozen seizures. After a traumatic six hour ordeal in the ER, I was told by the neurologist (who witnessed an episode), "Well, you're probably just anxious and depressed because of your Lyme diagnosis." (Ahem, I was diagnosed two and a half years ago, lady!!)

She discharged me and I had another seizure in the car. Never in my life have I felt so completely helpless and outraged by the medical community (and as a Lyme patient, that's really saying a lot).

I had a CT scan and a ton of blood work at the hospital and everything came back normal. How I long for the day when instead of sending you home, the doctors will actually say, "Everything came back normal--except for your Lyme disease tests." But that's a blog post for another day...

The neurologist called my episodes non-epileptic seizures. It may be helpful to read this link about what a non-epileptic seizure is. I, however, was sent home with a very unhelpful and downright demeaning paper describing my supposed disorder (also called pseudo seizures) as "one with no medical cause." It goes on to state in the next paragraph that, "this disorder is caused by stress or emotional trauma." Well, which is it? Is there a cause or not??

The neurologist kept asking me in every way she could possibly think of if I was abused, either currently or in the past. She really didn't seem to believe my answer of no. The clincher? My helpful and informative paper about non-epileptic seizures actually says, "Sometimes, non-epileptic seizures may be due to a person faking the symptoms to get something he or she wants." (I really wish I had a link to where ever they printed this off from!)

The good news is, it's already 7:00 P.M. and I haven't had a single seizure today. I must be still too worn out from my Oscar-worthy performance in the ER last night to muster up the strength to put on another show! Someone give me a trophy, because my acting skills last night were killer!

Jokes aside, I had an MRI this morning and am still waiting on the results of that. I am also waiting on an appointment for a 24-hour video monitoring seizure test that will hopefully shed some light on what the heck is actually going on. I also have an upcoming appointment in a few weeks with a more Lyme-friendly neurologist.

If you don't have Lyme disease, you probably have no idea how badly Lyme patients are treated by numerous medical professionals who are prehistorically out-of-date on their Lyme disease knowledge. If you do have Lyme disease, you likely have your own version of The Story of Receiving the Big Brush Off By Doctors. (Feel free to send me a link to your story and I would be happy to publish a link at the bottom of this post.)

We don't tolerate bullying in schools. So why should we tolerate it in our healthcare system? In my head I keep replaying the scene over and over again--this neurologist who refused to even look at me (all questions were addressed to my husband, not me) asking me the same question: Am I being abused or bullied, either now or in the past?

My new answer: Yes, my whole life, doctors just like you have abused me by discrediting me and my pain, time and again. I am a person, a human being, and I am trusting doctors just like you with my most sacred treasure: my health. You may not understand much about Lyme disease and I'm okay with hearing you utter those words--that you simply don't understand what is happening to my body. But you do not, under any circumstances have the right to insinuate that what I'm going through is in my head or that I am making it up.

Because the truth of the matter is, I've already forgiven doctors just like you who were not able to see my diagnosis as Lyme disease, inadvertently causing me to suffer an inhumane amount of pain and suffering for perhaps the rest of my life from what should have been a curable disease, all because I let doctors just like you convince myself that maybe my pain and suffering wasn't legit.


  1. I am sorry you have to deal with this hell. I really hope they end soon

  2. I truly hope you get some answers and feel better. it's so awful you were treated that way.... so sorry. feel better very soon.

  3. I'm sorry you were treated this way. It's unbelievable how common it is to be brushed off by doctors. I've been told the same thing many times. I had one doctor blame everything on an eating disorder.

    I also had seizures from Lyme and co (two unconscious ones while I was off meds). Luckily, one was in a Lyme friendly office and they did not insinuate that I was making it up.

  4. Wow. I should not read this, on the heals of arguing with my insurance plan over "allowed" and non-participating providers". Grrr. I totally get your frustration, and wish you many more happy experiences, all wrapped up with a big cure.

  5. Just read your blog about your ER experience. So sorry what you endured by another idiotic, narrow minded, uneducated duck. I have no patience for doctors who treat me this way anymore. I used to grin and bear it, not anymore. I have lost so much respect for the medical profession over the years. I really try not to be bitter about it because I know it's detrimental to my health, but it's hard to not to be sometimes. I pray you get better soon Alyson.


  6. Wow, friend! Praying, praying for you and so grateful for your strength and compassion in the face of ridiculousness!!!!! So very sorry you were treated in this way- unacceptable!!! May you rest well tonight- thinking of you..M

  7. So sorry you are going through such horrors of the body and those who are to do no harm beat you up instead of help. Sick and wrong.

  8. Great post. I have dealt with everything you've described. Neurologists are the biggest a-holes on the PLANET. Here's a link to my rant... Chin up and keep up the good writing. Life with Lyme can get better...(and then get worse again, and then get better again...)

  9. These doctors are just awful! I'm so sorry you were treated that way. I hope that the Lyme friendly neurologist will be able to help you. Hugs!!


  10. When the doctor asked if you've been abused, you could have said, "Yes! By Lyme-deniers like you!" ;)
    I'm so sorry that this happened to you, those seizures must be terrifying! I do have my own recent ER brush-off story; when my LLMD told me to go and get evaluated for meningitis, which I was having all the symptoms of. They were very serious and professional until... I had to explain that I am in treatment for late stage advanced Lyme, and then it was like someone flipped a switch and everyone's demeanor changed entirely. The ER doctor actually LAUGHED in my face! The nurses then proceeded to mock me loudly from the nurses station ten feet away from the room they had me in and I could hear every word. Jerks.
    On my discharge paper I noted where the ER doc works outside of the hospital, she works at a practice which is so notorious for being Lyme deniers that it is actually written about quite a bit in Pamela Weintraub's "Cure Unknown".
    I wrote about it at my main blog, which is still mainly a political blog, so please just ignore the stuff in the sidebars. I am building a separate Lyme blog but I got sidetracked by my illness so I'm still writing about my ordeal where I already have readers:

  11. Alyson, I'm so sorry you went through that. Ugh. What a joke! Such disregard is never okay. We could all write a book together of all the times we've encountered docs like that. I hope and pray you are not having as many seizures now. Do take care of yourself. Hope you're feeling better soon. Sending much love your way. Hugs. ~Michelle

  12. That sucks. I'm sorry. :(

  13. I don't forgive the doctors @ all. They have sold their soul. They have turned their back on their oath. I have had doctors tell me every lie, I'm a hypochondriac, have I been through any trauma, how is your marriage? Truth is I lost everything b/c of this disease, except my sanity & self-respect. I don't tolerate their behavior. I don't sign off on those papers. You don't have 2 sign those forms when they discharge you. I have fought over my doctor's medical notes. I have reported them to any and all agencies. If I have an appointment w/ a specialist and they make me wait , I leave. If they talk condescending & are misinformed purposely because they don't want 2 treat the "real" cause, I call them on it. I have called them a liar to their face and I always let them know that right now they r the doctor, but no one gets through this life without them or someone they love getting a serious illness & 1 day they will b sitting where I am, getting treated the same way by a doctor who is just counting the money & when ur there, remember Maureen said f*ck u.

  14. Bullied. I have never thought of it in this light, but you hit the nail on the head. During my last ER visit, the doctor asked me a few questions, then asked to see my husband in the hall. He asked him, "What do you really think is going on here?" My husband told him exactly what I had just finished saying. He pushed further, "Are you sure she isn't under a lot of stress? Is she trying to get your attention?" I'm so tired of this treatment... Thankfully, I have since found a Lyme doctor. I will have someone drive me the six hours to see him before I go to another dr around my hometown. I'm sorry this happened to you. It is scary to feel like you need to be in the ER and the doctors act like you're wasting their time.