Monday, January 25, 2016

Nobody Down There Will Help You


Follow along on Instagram @thewildercoast
On December 8th, 2015, I walked out of a brand new practitioner's office holding 13 prescriptions. Among them were anti-psychotics, anti-seizures, anti-convulsants, neurotrophic meds, sleep meds, anti-depressants and mood stabilizers.

This might seem odd, considering that the half dozen doctors I'd visited in the previous two months had insisted, in what felt like a single orchestrated act of dismissal, that I was, in fact, "a very healthy girl".

So I kept switching general practitioners, making the assistant fill out the paperwork she wasn't happy to be filling out, transferring my files to someone new, someone who might listen to me as I sat on the examination table, trying to steady my voice as I read through the growing list of symptoms that I keep recorded on my phone. 

At these appointments, in an effort to appear like someone who should be paid attention to, I always dressed as if I might be attending a job interview afterwards. I learned to keep my words even, free of emotion, as if I were a lawyer presenting the case on behalf of myself. I would try to get through my list of symptoms as quickly as possible, but there was never enough time. I'd choose my top five, the ones I found most disturbing, the most difficult to ignore.

But it kept not working. One by one the doctors appeared in front of me, white coated and dully impressed with themselves. They'd glance at their clipboards and assure me there was nothing much to worry about. One of them handed me a thick white binder filled with the names of local therapists. Another fixed me with a sympathetic look and said, "I'm so sorry you're depressed."

I never said I was depressed. 

On one particularly confusing afternoon, a younger MD I'd been seeing on and off since I moved to Asheville, seemed to be absorbing what I said. She listened, leaning forward with her hands clasped around her knee, nodding at the appropriate times. But the time I'd gotten through my allotted time, she smiled and sighed, with a dramatic shrug. Then she asked brightly, "So are you planning on having a baby any time soon?"       

By the time thanksgiving came around, I was, if not depressed, then at least completely baffled by the fact that nobody would help me. It was the first thought to hit me every morning when I woke up and felt the symptoms descend. On some mornings, my mind would awaken up but I'd find myself unable to move or even open my eyes- a type of nocturnal seizure. I'd lie there for a minute or two, conscious but paralyzed, rolling the question around in my head.

Nobody will help me.

Why will nobody help me.  

It was over thanksgiving that I dragged myself and my husband to a privately run urgent clinic, having been hit with an intense and mysterious symptom known as mal de dembarquement. If I was unable to catch the attention of any doctor, then maybe husband could. 

We were spending the holiday in south central Vermont, where I spent over half my life. At the clinic, I asked for a blood draw to test for lyme. I figured I could take advantage of being in New England, where Lyme is endemic and the doctors, I believed at the time, were savvy ("lyme literate."). The two times I had requested a lyme test in Asheville, I was immediately shut down. ("We don't have lyme in North Carolina.") On both occasions I backed down, thrown off by the way the doctors' faces instantly stiffened with annoyance. 

This time, I demanded the test. I refused to leave until they agreed, until I watched somebody leave the room holding a vial of blood. And the doctor fought me. At first, she gave me the familiar chorus: "Look at you, you're healthy." 

"I'm not healthy. I can barely walk right now."

"You say you can barely walk. Come back to me when you can't walk. Then we'll discuss what could be wrong." (This is not an exaggeration, although it's such outrageously bad medicine that if my husband had not been there to witness it, I probably would not believe my own memory.)

"I'm covered in this rash. It feels like I've been burned. I never get a rash."

She waved her hand- "That'll go away. You need to see a therapist."

"I already see a therapist."

"Listen, I could give you a lyme test, but the tests are largely inaccurate. They give false negatives the majority of the time."

"Maybe mine will be positive." 

"It won't be positive. But what if it is? What if you discovered you had Lyme disease, why would you even want to know? Listen to me. You live in the South. Nobody down there will help you."

This is when David spoke up from his chair in the corner, completely even-keeled. "If she has lyme, she wants to know because it's her right to know."

The doctor turned to face him, incredulous. "And you approve of this?" 

We both just stared at her, barely comprehending the audacity of a doctor to ask approval from a patient's husband like this. She threw her hands up. She was over us. "Fine." The door clicked shut behind her.

She was correct about the lyme test: they are complicated, and notoriously inaccurate. Many people who suffer terribly from lyme disease are presented with false negatives. (The CDC criteria misses between 1/3 and 2/3 of all true positives, especially in later stages.) In many cases, lyme is so covertly hidden within the body that the blood shows up as clear, the blood lies, although mine didn't. 

46 comments:

Chris Burke said...

More, please.

Susan Spaulding said...

Melina, I am so very sorry to hear this. If you didn't have anxiety and depression before, the flatline response from the medical establishment you experienced would cause it for sure! The sheer audacity. Great work advocating for yourself and kudos to David, too! Yet how exhausting! Please continue to take care of yourself! I am sending my best thoughts your way. Susan

Unknown said...

I'm so sorry you are going through all of this. You touched my heart deeply with a piece of sea glass a few years ago. I hope the best for you in this journey and you will be in my thoughts. And I really, really hope you have found a caring doctor!

CKC said...

This is a devastating post. I'm so sad to hear about your suffering. I'm relieved for you that you finally got a diagnosis. I'm pissed on your behalf at the medical community. And I'm in awe that you can still write so beautifully despite the pain and anger you must be feeling. May you find some relief soon.

Danielle Snider said...

What terrible care you got! It wasn't even care at all. I'm embarrassed at the
Medical community for not listening and not running a (simple to collect) blood test. Wow. As a practitioner I'm sorry you had to deal with this. I hope to be a better caregiver after reading this. Thanks for sharing.

Amanda Buck said...

OMG I'm so sorry and excuse me but what a B*#!! Shame on her!! I'm SO sick and tired of doctors acting that way and I can say that bc I work with MANY!! I've had pts say to me many times how he/she was rude, made us feel small, unimportant, like we were lying, etc etc! It sickens me EVERY TIME!! I'm staying hopeful that you've found someone great who is listening to you, treating you kindly and appropriately, and someone who feel comfortable with!

meg bird said...

This is probably an inappropriate time to compliment your writing, but I just have to. This is so well-stated, the whole thing. And also your marriage. I want to give the way you two respect and support each other a round of applause. I can't believe the treatment you've gotten from these doctors. It's unnerving and unnecessary and damaging when you're already broken. I'm so sorry, and look forward to following your recovery. Way to act on your gut.

Anonymous said...

I hope that you've found a doctor who takes your symptoms seriously by now, but if not, I have a friend who had a good experience with a Lyme MD in NYC and I'd be happy to find out his name (if NYC is remotely in the cards) or ask for a secondhand recommendation in the NC area. Even if your test had been negative, even if Lyme weren't a part of this story at all, your symptoms should have been taken seriously and it's unconscionable that they weren't. -Cecily

Katie said...

Melina, your post brought me to tears, not only because of the details of your story but also because how well-written it is. I am so sorry you're having to go through this right now, but I am blown away and impressed with how you are fighting for yourself and the medical care you deserve. Thank you for writing tonight. Sending you so many good thoughts right now - please take care.

Anonymous said...

Have you ever seen the documentary "Under our Skin" ? I think you would find it intersecting after hearing what you have gone through

Anonymous said...

It's available in you tube- Under Our Skin

Anonymous said...

I am in awe of the way you can write in the midst of this. I look forward to reading about your recovery....when you publish your inevitable book.

Maria said...

What a fascinating story! I read it in one go, barely breathing as it felt so intense.

It also felt very familiar because I, too, went through several doctors before I had a full-blown epileptic seizure and someone thought, hey, maybe she has epilepsy. I'd had confusing, vague symptoms for almost two years. One doctor thought I may be a hypochondriac, another one that I am hyperventilating.

In reality what I have is epilepsy, with mild - what they call simple partial - seizures. I get tingling in my face and arms, and I get lightheaded. And it feels good to know because now when it happens, I am not having to question myself, like, whether I am a hypochondriac, or whether I am an attention-seeking housewife, or whether I am plain crazy. Now when it happens I understand what the hell it is and I am not having to be afraid of it, afraid that I am making it all up in my head.

Big hugs to you. I love your writing so much.

abby said...

Melina this is your book. How devastating that not only are you going through this but that you have received no support from the very people paid to help us. But please keep WRITING, you have so much to offer and this story must be told. Sending healthy thoughts your way. I hope something works for you.

Pam said...

I was so happy and excited when I saw that you had posted........... then I began to read........ I am so sorry that the medical profession has put you through so much and given you so little. I must admit I was sad to come to the end..... I want more, I always want more from you. Please take care and hopefully there will be someone in NC to help you through your healing. God bless and my prayers go with you. Thank you for sharing.................

Amy said...

Hi, I have been thinking about you. I love to read your writing. am so sorry to hear about your battle with the medical establishment and your illness. Sending healing thoughts your way. Please keep writing when you feel up to it.

Anonymous said...

I'm sure you're aware of this, but you might find the blog of Glennon Doyle Melton (momastery.com) of interest, as she's suffered from Lyme as well. She's quite religious, which can be slightly off-putting, but she's as open minded and non-religious as religious can get, I suppose, and I enjoy her writing and insights...

Mom Starting From Scratch said...

Holy crap. That's all I can think of to say. And thank you for pushing through the horrible, dissmissive treatment you received - I don't know if it's any consolation right now, but I am sure sharing this story WILL help many people. I have a daughter with a rare syndrome which means I've met a grat many health care providers... Thankfully for the most part they've been amazing (maybe people going into pediatric medicine just are different folks?). But from time to time you encounter someone so, well....AWFUL that you feel literally stunned. Keep fighting, girl!

aimee said...

I am just so sorry it took so long for medical professionals (In the case of your experiences I use the term 'professional' lightly) to actual do something proactive.
Coming from a country where the medical community is widely acknowledged to be progressive proactive and readily accessable, I feel doubly horrified by how you have been treated.

I hope this is the start of a speedy and full recovery for you, a chapter in your life that will one day be behind you and nothing more than a memory.

Also .. this really is your book.

Anonymous said...

Really sorry you're going through this. I've been through Lyme in the past (my tell tale was Bell's palsy), and my brother is currently dealing with it. It can be insidious, and caregivers, as you have found, can be clueless, even when supposedly "Lyme literate". Stay strong and optimistic!

Lori Delgado said...

Oh! I am so glad to see you writing again! I hope you are able to use your words to help explain this mysterious disease to others and shed light on the underdiagnosis, and misunderstandings involved. I have a young student with lyme, and talking with her through some of the bad days has been such a good release for her. I hope you are doing well, all things considered. Creepy hugs from an internet stranger, :-)

Jill said...

Melina, this post made me so upset for you, my hands are shaking. Thank you for sharing this. I don't suffer from anything like lyme, but I do deal with extreme nausea and sensitivity, which surfaces when I have to deal with anything medically physical. I can't take my pulse, hear my heartbeat, get my blood pressure taken, without getting extremely nauseous and dizzy. Every doctor I've gone to, I explain my symptoms so they don't freak out if I suddenly need to lie down. And every doctor I've gone to, except one, has treated me like I am a psychopath. They shake their heads, they question me, as if I'm making this up, as if I like falling suddenly into a swirling well of nausea every time I'm in a doctor's office. I explained it to my cardiologist once and after awhile, I asked if I could lay down. Even though I had just told him about this, he got really shocked and asked what in the world was wrong with me. It's infuriating to be dismissed, to be treated like we don't know our own bodies. I can imagine how this experience was for you and it makes me want to cry with frustration. I hope you found a practitioner worthy to help your precious body. All my love. <3

Tela said...

I am so sorry you are going through this. I had a similar experience, with great disbelief from much of the medical community. Keep being your own advocate!

Northwest Nance said...

I have been worried about you these last few months. I'm so sorry to hear that my concern was valid. The way you had to fight to be heard is absolutely outrageous. I wish there was a way for your story to go viral. I don't know much about Lyme disease but I will research it a little more -- I hope you are getting good treatment that is effective.

Jessie said...

I shared this post as soon as I read it. I encourage everyone to share this post, let's help it go viral. As someone who suffers from chronic disease (but without the words or writing skills to get my story out there, I'm hopeless in that respect!) I encourage everyone to share this post it's important.

Sarah Beth said...

I'm so sorry you're going through this, but so thankful to you for sharing your story. I have 3 friends who have all been (finally) diagnosed with Lyme, but fought long hard battles to find a doctor who would even test them for Lyme. It is awesome that you are willing to share your story and struggles, and hopefully it may make the road for someone else just a little easier in the future.

Elizabeth Springer said...

I love your writing and I have missed you on this blog. I am sorry to hear that you were treated so poorly by a community that is bound to provide care and comfort. I hope that by knowing you have Lyme disease you are able to get treatment and care to feel better and continue living your vibrant and beautiful life.

Anonymous said...

Congratulations on advocating for yourself until you got a diagnosis. That can be a full-time job! I had an epiphany the other day (one I have at least annually) that Western medicine is, in fact, a violent system and that's because it's yet to be emancipated from it's violent roots (my examples would include treatment of "hysteria", the Hottentot venus, the only relatively recent use of pain medication for children during surgery...). My hope for the future is that we can all become more empowered to convert or dismantle this system completely to one that is actually about diagnosing and treating the patient rather than the doctor's own presumptions. Hugs and hope for your treatment and recovery. --Cedar

meghanssj said...

My Dad is the most stoic, Norwegian, hard working, never sick, never complaining, Midwestern, straight forward, non-new agey person I know, and he has Lyme's. Fortunately, we live in Minnesota where it is common, and treated by common everyday doctors. I do hear rumors though, that the Mayo Clinic (also a Minnesota fixture) does not believe it exists. Fortunately for my Dad, when it acts up, it is very easy for those around him to notice because he constantly needs to sleep. Also fortunately, he seems to be able to get it into remission with antibiotics. I find it all frightening, and I hope for you and for him that treatment gets better and that it can be something that fades into the past for for those who suffer, and those who love them. Wishing you the best, Melina.

meg bird said...

http://www.thisamericanlife.org/radio-archives/episode/577/something-only-i-can-see

This reminded me of you.

Ashley said...

Thank you. Lyme is not my world, but your story is like mine. Dr. and Dr., specialist and testing, nothing, nothing-so I'm "healthy" while I struggle to cope with scary, unrelenting symptoms. You will beat this, I am certain.

Kim said...

I'm thinking of you Melina! So many positive vibes and thoughts headed your way. Also, sharing your blog with friends :)

Much love,
Kim

Jes said...

<3 to you. And so many positive thoughts headed your way. I can't help but get angry now knowing story after story of friends, acquaintances, and women online who have been battled by their doctors. It's so sad that we've come to this. Love following your journey on Instagram and have shared it with several others battling lyme in the South. We absolutely have it down here and it's absolutely a problem. ((hugs)) to you & David as you fight this out!

Anonymous said...

What's unbelievable to me is how you can write so cool about this. I am no fire just reading this. Also: beautiful photo. Is that you?

Carolina said...

Ugh, I am so sorry you are going through this! We live in Massachusetts and are pretty aware of Lyme and its symptoms but we completely missed it in my then 7 year old daughter until her joints swelled up like baseballs and she suddenly could no longer walk. It turned out she had Lyme arthritis and she had to be carried everywhere for two months. Luckily, the doctors here recognized the symptoms immediately and we able to get her on a medication that worked. She did heal and you would never know the trauma she went through. One of my least favorite aspects of it is that my outdoors loving child is afraid of nature now. She used to run wild like a little forest fairy but now she stays on trails and prefers to be indoors.I wish she could have that innocence again but I am afraid, too. Lyme sucks! Wishing you wellness!

Carolina said...

One more thing I meant to say! Your doctors are infuriating for many reasons but to say that because you live in the South you could not have contracted Lyme is ridiculous! Lyme can lay dormant for years and many people contract it without ever seeing the tick. My daughter's doctor thinks that she likely contracted it a year before her symptoms showed. I did pick a tick off of her a year before but there was never a bulls-eye, so I thought she was safe. Only twenty percent of bites involving Lyme carrying ticks actually result in the classic bulls-eye. Just wanted to mention that for anyone who has been lucky enough to avoid this frustrating disease. I have a blog post on the subject that has been in the works for a while, too, so I have been feeling very fired up on this topic. Lyme is an epidemic and I hope that your website and others spreads the word! The more it is talked about, the more doctors will hopefully educate themselves about this.
Even my dog has Lyme :-(

Schafergal (Ashley) said...

Glad you're back - I've missed your beautiful writing.
As a medical professional, stories like yours make my blood boil. I am so sorry you have had to experience this.
Lyme is a nasty, tricky thing. A very close friend has been dealing with Lyme for several years, and has been through many doctors trying to find someone who will take her seriously (her main struggle the first year or two) and actually know what to do to help her. The medical community is so incredibly divided on Lyme, with some MDs denying its existence and others going so far as to say it's genetic and autoimmune (and perhaps just triggered by something like a tick bite?). But there are definite success stories! Another friend's mother suffered with Lyme for years and is now healed, healthy, and a great advocate for the Lyme community.
So all that to say that I'm sorry you have to deal with this, but I'm so glad that you are a strong person who is an excellent advocate for yourself. And the fact that you can write so eloquently while feeling terrible is truly amazing. I'm looking forward to reading your book.
Cheers,
Ashley in Montana

Sebastien Millon said...

Thank you for writing about this. I'm sorry you are going through the ringer with this, but it is so helpful that we step up and speak out. I've had similar experiences with doctors. Most are trying to help, but lyme/coinfections is like a third rail.

Doctors tend to get frustrated with cases like ours because they aren't cut and dry, they are complex. It is easier to just blame the patient. I'm still rather baffled at the controversy around lyme and how lyme patients get treated. In the future we will look back at this and see this episode as a black mark upon the medical community for the systematic lack of compassion and disrespect it showed individuals who were very sick and in great need.

But if we keep speaking out, hopefully it will provide impetus to fund more research, and help the medical community understand that there is a true problem that is systemic and large and needs to be addressed. Many individuals are being left behind due to a failure of our medical system.

Katelyn Perry said...

First, I just want to say thank you for sharing this story. Your writing is absolutely beautiful and I have been a fan for a while. Although I do not have Lyme disease, I have been through similar physician experiences while trying to find the cause of some terrible digestive issues. Having a doctor seemingly ignore everything you say is one of the most frustrating things in the world. I hope that you are able to find a doctor and a treatment plan that works for you. Sending you lots of good vibes and wishing for the best! Keep your head up and know that you are not alone!

Sarath said...

Continue down this path fearlessly. Walk in the confidence that has led you this far. Peace to you.

Anonymous said...

So sorry for the trouble you've had getting a diagnosis. Glad you are finally able to have direction for moving forward. Not knowing can be so scary. We spent a week in Massachusetts this past summer. A few weeks after returning, my 16 year old son became ill with headaches, fever, and fatigue. We checked for Mono and other likely things. After a week or two with no improvement, we were back to the doctor. This time they did full blood work and I pushed for a Lymes test and it came back positive. Thank God the doctor listened. A few weeks on antibiotics and he seems to have fully recovered. I'm not trying to brag about my good experience with his doctor, just letting you know that your story serves to remind me how grateful I should be. I know how terrible it can become and it would have crushed me to see my son have long term issues. I learned more about this terrible disease from another blogger I follow. Sharing your story will help others. I just can't believe how your doctors mistreated you. You have my sympathies and prayers that you have a much smoother road to recovery. Stay positive. You are a fighter and can get through this!

SJJ said...

So grateful that you can be proactive about your health, that you have the wherewithal to do your own research and be our own advocate. With stories like this one, I just wonder about those less fortunate - what if they didn't speak English or have the resources for a second opinion. I know this will work out for you Lina. We're all pulling for you. Much love to you (and David - hope he's recovering okay).

Teal Sallen said...

Another moving and vivid post, Melina. You illuminate how jarring is the experience when nearly everyone says the perfectly wrong thing, perfectly fails to hear you, perfectly fails to comprehend. You don't need that test, you don't need to exercise, you don't want to go into the pumpkin patch. We hear you. My heart aches for you. Love.

Natasha Carlsen said...

Melina,

Like somebody else said: Holy crap! The way you've been treated (or rather, not treated) is unbelievable, and it makes me so mad and sort of at a loss for words... My heart goes out to you as you suffer with this vicious and yet (to most doctors) "non-existent" disease.

I've had Lyme for 2 years and I've been where you've been, laying in bed all day in the dark, sleeping 15 hours straight, fevers, headaches, sensitive eyes, aching joints, the lot. But thank God, I found a doctor who understood and I'm being healed, and whenever I hear about someone with Lymes I want to share how I'm beating it, because I really want to help! It's such a helpless and horrible thing to have! There is a doctor in Wisconsin at the Fox Valley Wellness Center, who is helping me rebuild my immune system in order to fight the Lyme. Melina dear, look into the natural healing way, because what you're taking will wreck your body! And girl, you CAN get better and you WILL. :) This doctor/center has helped a lot of people with Lymes, and maybe they'll know of a doctor in your area?

There is also this blog of a guy who beat Lyme, and now he runs marathons. http://curechroniclymedisease.com/lymesdiet.html

I'll pray for healing for you, don't give in! Your body can beat it if it has the right tools.

Their number is 920-922-5433

Love to you and your husband.
Tasha C.

Laura Glass said...

I'm so sorry to read what you're going through. I just read this on NPR and the "not able to wake up" symptom made me think of your post. You might find this helpful/interesting: http://www.npr.org/sections/health-shots/2016/02/08/466032063/scientists-discover-a-second-bacterium-that-causes-lyme-disease?utm_medium=RSS&utm_campaign=news

Rosey Rebecca said...

Ugh! This sounds so much what I went through when I was trying to figure out what was wrong with my body in 2014. It took almost 10 doctors and PTs and prob 20 tests to figure out I had a labral tear in my hip and needed surgery. Meanwhile, I went almost a year without being able to walk or hike or workout, which fueled my anxiety and made the doctors tell me repeatedly that it was just in my head.

Glad your husband took a stand. I'll actually be talking about my hip surgery on my blog tomorrow.