Listen To M.E.-An ME/CFS Recovery Story: Part II – Implosion

July 15, 2009

Posted by Cort Johnson

To Read Part I Click Here

When last we left ‘patient X’ he had spent a night in a New York mental facility after collapsing with exhaustion and telling medical personnel that he had myalgic encephalomyelitis/chronic fatigue syndrome. Now back in California, with his health failing he’s  going from clinic to clinic trying to find some help.

A Desperate Search. For the next 6 months I would run around from clinic to clinic trying treatment after treatment. With each treatment I just got sicker and sicker. At the end of 6 months, which was March, 2007 I was almost completely bedridden and was down from 180 to 165 pounds.

I called my dad to go to a new clinic with me and let him know what was going on with my health. They told him that his son seems fairly viral and could be toxic and needs to detox. This was actually kinda cool, at least he knew I was sick and not really psychiatric. Unfortunately I reacted poorly to my first treatment, so poorly I began mumbling to myself and sure enough the doc there insisted I was psychiatric and they could no longer treat me in a clinical setting and that I needed a shrink !

Then I heard about a MD/Naturopath in Arizona.  The doc said I would be there a few months and that he could cure me!!!  I hired a caretaker to help me while I was there. The very first treatment I reacted to horribly again but this one would put me on my back for the next 2 years. Soon I started walking completely slouched over because of severe hypotension/POTS, my hands and feet began turning red due to nervous system deregulation and I would have to take showers laying on the bathtub floor with the water just splattering on my face. I also had to use a wheelchair for the first time.

Odd Man Out at the  Nursing Home. My caretaker quit so I asked the doctor to call my friends for me and let them know what’s going on. Well he called alright and told them I was crazy! I had no other options but to call a nursing home and off to the nursing home I went. Mind you six months earlier I was running a business. Now I was a 32 year old in a nursing home. I would spend the next 30 days in the home. The youngest person besides myself in the home was 71.

Now I was starting not to be able to tolerate light or noise.

While I was in the home my neurological issues began to get worse. Now I was starting not to be able to tolerate light or noise. You would think in an old folks home all would be quiet – well that’s not the case. Most of them are hard of hearing so they speak very loudly and the assistants there speak loudly as well. Not to mention they all had their TV’s on full volume. They just could not understand how a human being could not listen to noise or be sensitive to light. This got the coordinator very suspicious about my mental stability.

So before you know it a middle-aged women I had never seen, walked into my room and started drilling me. I told her I had M.E./CFS and gave her a pamphlet on the disease.  Sure enough.. ..she was from the state psychiatric social services department. She said that I had problems and she was gonna have to make arrangements for me. Oh God!! I knew what those arrangements would be. She said she would be back in 3 days to get me after she got approval from her superior.

Well, I frantically started dialing all my friends to come drive 6 hours and get me. Finally I had a taker, one of my good girl friends.  Back in California I had no choice but to stay in a hotel.  Unfortunately my health continued to deteriorate as now I was developing food and chemical sensitivities. I started trying dozens of different foods but my body could literally only tolerate squash, yellow squash to be exact.

Nervous System Collapse. Then one day I was watching T.V with the volume on very low and all the sudden my brain felt like it was ‘scrambling’.  It was so debilitating that it’s hard to describe. (I would later learn from my current doctor that this phenomenon occurs because the cluster of nerves called the ganglion get damaged by the enterovirus that causes M.E. So any sensory inputs can get jumbled and distorted. This effect would stimulate my nervous system so severely that down the road I would not be able too tolerate touch, whispers or even be able to sustain a mere thought process without getting over stimulated!!! If I was pushed too far mentally I would have a seizure from the over-stimulation.)

This effect would stimulate my nervous system so severely…I would not be able too tolerate touch, whispers..If I was pushed too far mentally I would have a seizure from the over-stimulation.

I believe by far this is the most debilitating and confining element of severe M.E. This is what drives people with M.E. into complete isolation.

The Last Safety Net – Home – I started to run out of money and had no other options except to return back to the Midwest. So blind-folded and with my ear plugs in, off to the Midwest I went. My dad  was kind enough to get me an apartment and new care taker. I was living in a complete black room 24 hrs a day with not a bit of noise.  I was 150 lbs and losing weight fast. I was around 15% functional.

I would later find out what was happening was that I was going into dementia.

I started having a hard time seeing around me and kind of felt like I was floating in space . My brain could not take in the surroundings. For example, I would look at the closet and know I need a shirt but would not know how to pick it out. I would later find out that I was going into dementia.

In April (2008) I had my caretaker contact an autism specialist. The doctor couldn’t offer me much help, however she did authorize several nutritional tests and a genetic profile test.  My results came back and showed I had very low minerals and amino acids (Click here to see test results.) The autism doctor recommended that I go to the hospital but I said “No!”. My first experience with the hospital in New York had been brutal. Most importantly the environment of the hospital would not be M.E friendly. Lot’s of noise and light and just a real lack of understanding of M.E. Patients with severe sensory overload.Very ill ME/CFS patient

The Family Doctor We made one more call to a friend of mine and an independent ME/CFS researcher.  He looked at my profiles and sure enough he said that it would be best to go to the hospital as my body was literally starving.

Since I was back in Ohio I said to my dad let’s at least call Steve – our family doctor and Dad’s best friend.  He said he would only treat me if I came in. I was extremely hesitant. The staff was so sweet when I arrived. They all knew me and took care of me since I was a little boy and sure enough when I got there the environment was perfect for me. They actually dimmed all the lights.

Well, here comes Steve yelling “Turn on the lights!” Tell’s Carol to get out of the room, turns on the lights – to which I had put  on very dark sunglasses again – and tells me “I’ve dealt with this before and I’m gonna put you on anti-depressants that’s the way I treat this.” I was shocked….I told him I’m not depressed and I understand that those medications have helped some people in the past in certain situations but I’m starving and very sick.

Near Starvation. I handed him all of my nutritional information and all my past blood tests. He browsed through them in 30 seconds, scoffed at me and said they were all normal. I told him I’m starving, I can’t eat without having a serious reaction and worst of all my throat would close up. He told me to start eating and then said “Now you need to get out of my office so I can do my rounds at the hospital”  I said “Please, Steve just LISTEN TO M.E.”  but he wouldn’t.

“I’ve dealt with this before and I’m gonna put you on anti-depressants that’s the way I treat this.”.”

Later that week my dad called 911 to take me to the hospital as I could barely function.  I told the doc who evaluated me that I had malnutrition because I can’t eat due to my chemical sensitivities. I knew there weren’t any treatments she could do to help my disease so I only asked for I.V. feeding.  She seemed somewhat compassionate and they hooked me up to a saline bag. Then she told me she would see me in the morning for further evaluation. ation.

Well, the next morning I could hear arguing outside my room. It was my dad and the doctor going back and forth. Turns out Steve was listed as my doctor and Steve told her I was psychiatric. She told my dad I had ADD and was psychiatric and they were gonna release me. My official weight at the hospital was 126 pounds… I’m 6’3.

ME/CFS Patient Bald Emaciated with ME/CFSBack to the apartment I went. Towards fall I told my dad I needed to be completely alone.. (My dad had moved me in with him because he couldn’t afford my own apartment anymore.)  His room was right next to mine and it was nearly impossible for him to be quiet enough. I was wearing sunglasses in my pitch dark room, could not bear to have anyone near me as the stimulus of just someone getting close to me was making me sick. Since my dad couldn’t get close to me, most days he would leave my food outside the door.

Well, my dad just got a new job at the dealership which was bringing in a little money on top of my disability but a caretaker would be a thousand a week!! Finally we ran into some luck. My dad’s boss Jay whom I am so grateful for said his daughter would be able to take care of me for only $220 a week!!!! My god, did we luck out, this was just a blessing.

So in November I finally got my own apartment and Jay’s daughter Krystal was my new caretaker. Sadly just two weeks later Krystal  would tell me Jay was diagnosed with colon cancer. I just learned that my grandmother had just passed on as well. I was too ill to mourn my grandma’s loss and think about Jay as any emotion would literally put me into convulsions. Even though Krystal’s dad was diagnosed she would not let anything get in the way of taking care of me. She was the most perfect caretaker we could have asked for.

By early November the suffering was just relentless. At that point a friend of a friend got in contact with my dad’s girlfriend and said she knew about a doctor who cures disease and could cure M.E. Even though this interested me, a few days went by before it kinda sunk in that there might be help on the horizon.

A Leap of Faith. A few days later I decided to take the leap of faith.  I crawled into my dad’s car. We arrived at the doctor’s office where I crawled my way into the lobby. I laid in the lobby until my name was called. Dad lifted me up onto the table and the doctor walked in.

Next Up: Last Chance

Listen To M.E. Part I

Add Your Comment

{ 0 comments… add one now }

Leave a Comment

Previous post:

Next post: