Tilting South: Seeing Dr. Klimas in Miami – ‘A Chronic Fatigue Syndrome Chronicle’ # 13

by Carol Lefelt | Sep 21, 2013 | Stories | 48 comments

Dr. Nancy Klimas, Chief Medical Officer of the Chronic Fatigue Center for Research and Treatment for Neuro-Immune Disorders, Miami, Florida, and her associate Dr. Irma Rey

It was a pleasure to meet with people who believe in the disease, know its details, and understand the ordeals of its sufferers

This is by far the longest distance we’ve traveled for my disease. Steve and I wedged ourselves into those cramped Continental seats. (I’m always in the middle because he needs to sit on the end so he can more easily make multiple trips to the bathroom. That means I sit next to some stranger who might or might not want to talk, but who also must make multiple trips to the bathroom, causing me too frequently to squeeze my way out into the aisle.)

Because we would spend only two nights in Miami, we took only an overnight bag and therefore proceeded directly to our rental car after my wheelchair arrived from baggage. Steve was at my side the whole way and took over the difficult logistics.

He entered the clinic with me for my 9:30 am appointment, and stayed in the waiting room the whole day, until I finished at 5pm. I must have done something right in my previous life to deserve him.

The office staff is dedicated to Dr. Klimas and to the mission of the clinic:

“to use the latest scientific breakthroughs in therapeutics to provide comprehensive diagnostics and treatment plans for their patients. The integration of research, diagnostics and therapeutics within an extremely patient oriented clinic will help optimize treatments best suited for the patient’s disease type and avoid potential misdiagnosis or under-treatment due to a general or limited approach for treatment of the conditions.” http://www.cfsclinic.com/

It was a pleasure to meet with people who believe in the disease, know its details, and understand the ordeals of its sufferers. I was impressed by a friendliness and caring I hadn’t found with other CFS doctors, as well as thoroughness, expertise and the highest quality of medical care. Too bad Dr. Klimas’ clinic was only 3 years old; nothing like this existed during the worst years of my illness.

A tall lady (in her 50’s maybe?) with long straight light brown hair parted at the side, Dr. Klimas wears stylish eyeglasses but no makeup and dresses unpretentiously. I’ve seen her in various Internet interviews and she always wears plain slacks and a sweater under a white lab coat. She has an easy smile and happy voice that helps put patients quickly at ease.

After a long interview in her office, where she carefully reviewed my records (including detailed questionnaires I had completed and sent to the clinic earlier) and listened to my answers to her questions, she decided I should take a ‘tilt-table’ test, something I’d heard about but never had. I was strapped down like Frankenstein’s monster to an examination table and attached to EKG and blood pressure monitors.

For the first time in her long journey with ME/CFS, Carol gets on a tilt table – and receives two new diagnoses…POTS and neurally mediated hypotension

Nina cranked up the table until I was standing but able to lean back. There I remained for about ½ hour as she scribbled marks on a chart. After about 20 minutes, my heart rate soared and my blood pressure dropped. I was released from the table and given IV electrolytes for ½ hour, and then returned to the table for another half-hour.

The diagnosis: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH), conditions which make one lightheaded, dizzy, nauseous, fatigued and cause headaches, visual disturbances, sweating, and breathing difficulties. Blood seems to pool in the feet and not reach vital organs, including the brain. The treatment: a small dose of a beta-blocker and continually gulping down electrolytes, like coconut water and Gatorade-type products. http://www.cfids.org/about-cfids/orthostatic-intolerance.asp

Nurses drew more blood from my overtaxed and complaining veins (I say ‘nurses’ because it took 5 of them and much stabbing to finally get the blood flowing) for immune system testing.

In a telephone conference a few weeks later, Dr. Klimas explained that the blood tests revealed I had a very low Natural K cell function (normal = 25%; me = 8%) and a high white blood cell count, indicating that my system was in “anti-viral overdrive”.

Oy.

“But we can help you,” she said. The treatment is Immunivir, an amino acid that stimulates the immune system, which has to be purchased from Canada. (The amino acid, not my immune system – though I’d be happy to buy a new one.)

I admire Dr. Klimas’ dedication to this disease, her patient, compassionate demeanor with CFS/ME sufferers, her skills and intelligence. Her push to increase research funding and her attention to the devastating effects on so many people, provide hope and validation for those of us whose lives have been turned inside-out. And for our caretakers.

I have visited the clinic 3 times, the last two with Dr. Irma Rey, who sees patients also at the new Institute for Neuro-Immune Medicine at Nova Southeastern University founded by Dr. Klimas. Dr. Rey is another compassionate professional, with lots of experience in the ways of ME/CFS and the immune system. She is patient and understanding and full of good humor, AND SHE ANSWERS EMAIL, LIKE, IMMEDIATELY! I am grateful for her expertise and intelligence.’

Full Disclosure

Carol’s low NK cell functioning and her high white lymphocyte counts suggested she was fighting off an infection

But full disclosure: As I write this in September of 2013, I am in the middle of a severe inflammatory cascade with symptoms I haven’t experienced in years. I’ve been taking Atenolol, the beta blocker, and Immunovir for 2 years and saturating myself with Electrolyte water for POTS and NMH.

But for some reason not even Dr. Rey can figure out, the headaches, brain fog, stiff neck, hot flashes, weakness, fatigue and body aches have returned with a particular meanness. The latest blood work revealed a continuing weak and pooped out immune system plus new viruses as well as a continuation of the ever-present HHV6, and so the treatment now includes the anti-viral Famvir and another trial of Low Dose Naltrexone (which I’d tried before but stopped because of difficulty sleeping – so now it’s LOW Low Dose Naltrexone for me).

I’ve had so many dismaying experiences with doctors: Doctors who don’t listen, who can’t say “I don’t know,” who hear only the symptoms that will fit your case into their specialty or pre-determined diagnosis; doctors who blame you for an unsuccessful treatment; doctors who inflate themselves like pufferfish, dismissing colleagues and belittling their patients; doctors who make money by selling products they prescribe; doctors who don’t remember you from one visit to the next and ask the same questions over and over without looking at their records; doctors who squeeze so many patients into a day so that a visit takes a whole morning or afternoon; doctors who endorse wacko treatments without hard evidence of success.

I’ve also encountered wonderful doctors, smart, experienced people with wisdom and compassion, who believe in my illness, take the time to listen patiently and offer what they can but realize and admit their limits and the limits of medicine in general. I’d prefer a cure, of course, but I know that ain’t gonna happen, and so at least for now I can rely on the strength, honesty and expert knowledge of Dr. Klimas, Dr. Rey and Dr. Hamm.

Read more of Carol’s blogs here

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