Listen To M.E. – An ME/CFS Recovery Story: Part I

July 12, 2009

Posted by Cort Johnson

This is  the most extroardinary recovery story I’ve ever heard. I’d known this person before his health had completely fallen apart. He’d participated heavily in the ME/CFS forums and had obviously studied this disease intensely but he’d basically slid off a cliff.   His case of ME/CFS had progressed far, far beyond what most people face, and quite frankly, I shuddered to think of what he was going through. I’d offered my feeble idea’s- which he gently brushed aside – and then he disappeared.  The next thing I expected to hear was that he was dead. That was over a  year ago.  About early May I got an e-mail from him. This is what he told me…

Yea, I had asthma, a good amount of anxiety and chest infections twice a year but I was never too sick to stop from running cross country, playing basketball, hanging out with friends and doing all the things any normal kid would do.

“(I was) never too sick to stop.. from running cross country, playing basketball, hanging out with friends and doing all the things any normal kid would do.”

Our family’s best friend was a doctor, so we always got excellent treatment when someone in my family would get sick. I grew up in an upper middle class neighborhood and had a fairly normal family. I would say I had an above average life as a child and through adolescence.

In the late summer of 94′, just before my second year at the University of Cincinnati was to begin, I got that flu. The only real symptom I had was a 104 fever. I remember it so vividly, because my girlfriend had to soak me in ice for hours each day.

Luckily the fever went away and I was glad to be normal again until I decided to go for a jog a few days later. I had a sharp pain in my heart and felt disoriented afterwards. Then several weeks after that I developed some fatigue and had some mild panic attacks. I went to the University doctor to let him know something just didn’t feel right. After his evaluation he said I had allergies. I told him I’d had allergies my entire life and never felt this way before. He told me not to worry. It seemed like I was getting under his skin. So on my way I went.

None of that stopped me from having my college fun. I was in a fraternity, had a bunch of friends and was extremely popular. Even with those additional odd symptoms I made it thru college in five years. Then it was off to California to live the dream life.

In Newport Beach

Boy, did I live the dream for the next seven years. I was renting a beautiful house seven houses away from the sand in beautiful Newport Beach. I worked out as much as my body would allow and looked fit, went boating often, had plenty of girl friends, went to parties from Orange County to the Hollywood Hills and eventually partnered in a car business that became very successful. I was the guy everyone wanted to be around.

Life was nearly perfect except for my  20 or so weird symptoms which I kept a secret from family and friends. I was 85% functional and I never let those nagging symptoms get the best of me.

I had gone to the doctor on a few occasions and they always said stop being a hypochondriac, it’s allergies, you’re normal, here’s an anti-depressant.  All the chronically activated virus they found on my blood work throughout the years was just no big deal. “Oh, it’s just chronic Epstein Barr” or “You might have CFS which is no big deal” they’d say.  I just felt like something might be really wrong all along…But the docs just wouldn’t LISTEN TO M.E.

Little did I know I had one of the most debilitating diseases on the planet. Little did I know  but I was accruing virus after virus, huge amounts of toxins and just a tremendous amount of neurological damage.

Little did I know I had one of the most debilitating diseases on the planet. …and was accruing virus after virus, huge amounts of toxins and a tremendous amount of neurological damage

Anyway it’s the summer of 2005, I’m 30 years old and my mom gets diagnosed with lung cancer.  I decided to buy a video recorder and tape my life. I taped everything – from me at work, me socially, mom and dad at home in Ohio, grandparents in New York and just life in general. Mom dies Feb 25th, 2006.

After my mom’s death the symptoms I had since my initial infection gradually got worse and I had a new one – unrelenting vertigo and I couldn’t drink alcohol anymore. So I decided to see an herbalist. This was my first venture into the world of natural medicine. For the next five months he would treat me to no avail.

Soon I would start getting these ‘panic attacks’, well, not really panic attacks, they were much worse, it felt like anytime I would have to talk to customers at work my nervous system would get ‘sick’. This was unusual because I made my living speaking with people. Furthermore I started getting clumsy; fumbling things, walking into walls.  I started spelling words backwards and with double letters as well. Holding my pen for more than ten seconds became a chore.

Viral and Immune Test Results from 2006

With no help from the medical profession forthcoming I started researching on my own and eventually came to the conclusion that I had myalgic encephalomyelitis (or chronic fatigue syndrome).

In New York I fell down face first with exhaustion in the hotel lobby. My dad called 911 and the ambulance came and took me to the hospital. On the way to the hospital I told the techs that I had severe exhaustion due to Chronic Fatigue Syndrome. That I most likely I had a form of it called Myalgic Encephalomyelitis (Inflammation of the brain and spinal cord). Well when I arrived at the hospital they said my vitals were normal and I had psychiatric issues and checked me into the Psych Ward. Dad was surprised but kinda thought it was normal procedure with our hospitals.

They stripped searched me for drugs, made me put on a green gown… the warden…said “we were all nuts.”

I could barely function when I was admitted but was clearly sane. Man, this place was scary, just like the movies. Just real chilly and dark with an evil looking warden. They stripped searched me for drugs, made me put on a green gown and interview with the warden. I told her my disease, even had her speak to my naturopath to confirm my diagnosis. She said “we were all nuts.” So after my interview she loaded me up with drugs – Haldol, a antipsychotic drug, and Ativan – very high amounts.

Well, I certainly slept for the first time in a while.  Just like a 1000 pound elephant would have slept on all that medication. The next morning she decided to let me go after another interview but not before telling me I slept so well because I was psychotic and that’s why the medicine worked. I told her I was sick not psychotic but she wouldn’t LISTEN TO M.E.

Next Up- Part II: Implosion

6 comments

{ 6 comments… read them below or add one }

David Walker July 15, 2009 at 8:56 am

This is a very interesting story, and well-written too. I eagerly await Part II!

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Sarah Robinson July 15, 2009 at 10:53 am

I join you in eagerly awaiting Part II. I reckon all of us have been told that we’re crazy instead of physically ill. It’s dreadful but somehow reassuring to read about someone else on this twisted path. Thanks so much to Cort and to the man whose story this is.

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Louise Mowder July 15, 2009 at 12:36 pm

Where is Part II? We’ve been waiting three days now!

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cort July 15, 2009 at 12:52 pm

Sorry Louise. I intended to publish Part II as soon as the link showed up on Co-cure (so the posts wouldn’t overlap) but Co-Cure (once again) lost my message and it took them three days to get the link up. They finally put it up this morning. Part II will be up tonight!

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Keith July 15, 2009 at 6:07 pm

I’ve had CFS for 22 years. Just lost my great ,understanding doctor of 12 years. Went to this new Doctor in the mids of a horrible relapse and was treated horribly and dismissed as a whiner. He upped my Lexapro and said see you in six months. I can relate to this story so much.Thank you Cort for all the work you are putting into this sight. It is great.

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Terri August 31, 2009 at 10:54 pm

Hi Cort,
We lobbied Congress together a few years ago, I was the blonde from La Jolla, CA. I had NO IDEA of what you went thru !!! And YOU are NOT crazy ! I am amazed at how well written you are. I , myself and having problems with memory and cognitive dysfunction, spelling, reading things wrong, can’t add or subtract anymore and mix up appmts, people, etc. I have the same symptoms that my mother had (she has early onset moderate dementia now) in her early stages.
God Bless you and all of us who struggle with the bullshit that we deal with everyday.
Hugs,
Terri **

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