Tuesday, April 19, 2016

You were wrong, doctor.

Please consider helping me fight my battle against Neuroborreliosis. I am five months into one year of intensive and incredibly expensive treatment. Absolutely nothing is covered by insurance and the expenses have become impossible. As a thank you, I will write you a written thank you card in the mail, and ship you a freshly picked, handmade sea-glass necklace if you request one. Please click the yellow donate button on the top right column. And thank you. 
left side bells palsy and eyelid droop, both markers of Chronic Lyme
--(To hear more of my story, listen to my new episode on the Dirtbag Diaries Podcast) --

When the doctor at the urgent clinic in New Hampshire told me that nobody down South would be able to help me, she was more than just bizarre and callously dismissive. She was completely wrong.

A few days after returning to Asheville after thanksgiving, I found myself under the care of a Lyme Literate PA who works under Dr. Jemsek- 'Dr. J' as he's known in the Lyme community.

Perhaps the world's greatest expert on the treatment of chronic Lyme, Jemsek's story is the focus of the documentary "Under Our Skin."  He began treating critically ill chronic lyme patients with intravenous, high dose, long term antibiotics, and these patients who had been offered no hope from decade's worth of doctor, dismissals, misdiagnoses and drugs....were starting to recover. Many of them completely.

The insurance agencies, however, were not keen on expensive, long term antibiotics being doled out to every chronic lyme patient out there. For treating these patients in a manner that was considered outside of normal protocol (although there is no medically accepted or effective protocol for Chronic Lyme) Jemsek lost his medical license for one year.

The patients who had finally found the answer, the doctor, and potentially the cure, had to go without help or treatment for a year as their health continued to deteriorate.

Jemsek is now back in practice, running the Jemsek Specialty Clinic in Washington DC. He continues to treat the most severe cases of Chronic Lyme in the world.

There are only a small handful of medical practitioners that work below this renowned physician, and one of them lives in Asheville, NC and was able to see me three days after I had a positive ELISA test, and then a Western Blot that showed multiple markers of Borrelia Burgdorferi.

I wish to tell that urgent care doctor how wrong she was.

Somebody 'down here' is helping me.

I wish to tell her that next time she comes across a woman sitting on the butcher-paper lined exam table, a woman covered head to toe in livid red spots who can barely use her legs and is begging for help, she might consider saying something other than, "you need deep psychological counseling."

I wish to explain to her that the symptom I was presenting with, an overwhelming experience of being sucked down to the ground as if by centrifuge, one that made walking impossible and lying down a nauseating, stomach-dropping experience is not 'anxiety' at all but a symptom known as mal de debarquement. MDD is a hallmark symptom of late stage, Neuroborreliosis.

Most of all, I wish to tell her exactly what it was that her ignorance cost my husband and I, because it is brutal, and impossibly sad, and we will never fully recover from it.

----please share my this story. The culture of ignorance over the growing pandemic of Lyme Disease is leading to despair, suicide, bankruptcy and suffering for patients and their families---

12 comments:

Anonymous said...

oh melina. the more your story comes out, the more my heart goes out to you. I see you on IG feeling better, and I am thankful to God for that, but I am always on the edge of my seat when I read posts like this. I'll be praying for you.

Jaime said...

I wrote several drafts of this comment and deleted them all. Actually, I've written emails too, but nothing seems to be coming out right. I'm so sorry you have gone through this. I admire you so much. Promise me that you are outside enjoying this beautiful day today. You deserve it.

Andrew Takahashi said...

Gah, this is upsetting. I am constantly floored by your story, but more than your story I am inspired by your strength. I love you and I'm always here supporting you.

bekah said...

I am still so furious. Just so angry at the way you were treated, and so sorry you have gone through so so much.

Anonymous said...

Have you told her? I hope so. Send a letter. It doesn't have to be accusatory. Stick to the facts. She was wrong, and she should know that. In fact, it's her obligation to WANT to know, and your obligation to tell her.

Maria said...

"I wish to tell her exactly what it was that her ignorance cost my husband and I, because it is brutal, and impossibly sad, and we will never fully recover from it."

A pregnancy that wouldn't lead to a child? I am trying to think what you're referring to, but that's the only thing I can come up with.

Rhett said...

I'm am so glad you found someone who is helping you and angry you were dismissed with "you need deep psychological counseling". I think you should tell her. Hopefully she can learn from her mistake and never blow a patient off again. Your strength is inspiring, Melina. Love, light, and hope.

Anonymous said...

I feel for you. What a terrible, terrible experience and a terrible Doctor. I am curious about your last statement-I hope you'll follow up and explain what you are alluding to? Such a teaser statement must make everyone want to find out about what happened.

Aimee said...

To be honest I would probably report her to the medical board. Not only was her callous disregard of you and your symptoms incorrect, medically inadequate and wholly wrong, it also highlights a deep diagnostic incompetence. Not to mention the bedside manner of a potato.

But boy are you showing her how wrong she was, and I am sure you will be one of those who can fully triumph over this awful chronic illness. And while doing it you are an amazing platform for change and information sharing as well.

xxxx

Anonymous said...

So sorry to hear about how your suffering was dismissed. Do write to that Dr. Hopefully if your letter gets through her prejudice it might help save someone else who will come to her for help in a similar situation.

Also the podcast episode you mentioned, is that an additional one to the "Miracle of Darkness" as I loved listening to that but can't find the second one via that link?

Pam said...

I look forward to every word you write. The gift you share with us is a blessing. Thank you very much and I continue to pray for you and your recovery. God bless you dear Melina. Feel better.

CaliGal said...

It's been a long while since I've been able to leave a comment for you but, I want you to know that I've been reading and following....and praying for you. Not only for a long, happy and healthy marriage but for your health and well being.

I relocated from LA to South Florida, having lost my mom in the summer of 2014 and then making the big decision to return home to be with my dad, and to eventually care for him when the time comes.

I was worried about you because I understand what it's like to live with chronic pain and illness. Holy Cow I wish I could be of help to you! We all face some type of issue or issues as we grow. I've had my share and still deal with some major health issues but, one thing that I found that helped me most was my own positive attitude. It sucks today but remember that: This Too Shall Pass.

I love how diligent you are in taking control of your health and health needs. Reminds me of myself. So, all I can say is keep it up, don't stop and never settle! EVER!

You're beautiful inside and out and I have total faith that you'll find what you need to help you and everything will get better.

Much love to you and your man... xoxoxo "CaliGal" (Elizabeth)