- Source of the Story
- Provided to Health Rising
- Name
- Mike Dessin
- Diagnosis
-
- Chronic Fatigue Syndrome
- Disease Course Over Time
- See story
- Approximate Date of Illness Began
- 1996-2000
- Duration
- 11-15 years
- Functionality at it's Worst
- Mostly bedbound
- Symptoms
- fatigue, anxiety, vertigo, alcohol intolerance, coordination, word-spelling problems, hypotension, POTS, light/noise intolerance, food intolerances, emaciation, dementia, pancreatitis, seizures, electromagnetic and chemical sensitivities
- Positive Test Results
- See Mike's story
- Treatments That Made A Big Difference
- Neural therapy (see Klinghardt), osteopathic medicine, prolotherapy, laser therapy, intravenous nutrient replacement, acupuncture and homeopathy.
- Treatments That Made You Worse
- Glutathione IV, DMSA Chelation, Hydrogen peroxide IV, Methyl B12 IV, Vitamin C IV, Alpha Lipoic Acid and herbs. Anything that attempted to move too much mercury at once or the overuse of antioxidants made Mike much worse. The glutathione IV's finally put him over the edge
- Present State of Health
-
- Almost recovered - Able to lead norrmal lifestyle
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.
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.
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.
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.
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.
Part II: Implosion
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.
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.)
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.
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.
Test Results From March 2008
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.
[fright]
[/fright]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.
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.
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.
Back 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.
At this point I could only stay conscious when I was stimulated so he put his hands on my shoulders to awaken me. I could only mumble a few words for a short period of time. After I was done mumbling that I’m sick with mercury poisoning and a bunch of viruses I said “I have M.E,” the doctor looked at me and said in a very gentle voice. “I’ve seen this before and I know I can cure you. I’m a 99% shooter when it comes to curing patients who come in to my clinic.
He looked over at my Dad and said “Your son does have M.E and everything he has said is correct.” I said how are you gonna cure me? and he looked at me and said “All you need to do is have faith and just LISTEN TO M.E. !! ” Which I did.
I would not see him for another several days as we were awaiting test results. He took the results very seriously. At this point I weighed 115 pounds and the tests indicated that I was in organ failure in virtually all my organs including being inundated with mold and worms in my liver.
A few days later he arranged for me to go to the hospital to get a pic line placed so that I could be fed intravenously. That night I got home from the hospital and my doc was at my house waiting for me. Doc said we didn’t have enough time so he was gonna start coming to my house to feed me at night and start my treatment. I overheard my dad say the first office visit was $500 and he could not afford the doctor so I told my doc that. Doc said “Don’t worry about the money”.
A few days after my doc started treating me I told Krystal that I wanted to go to the clinic one day. Boy, was that a mistake. When I got to the office I tried to lean up. I hadn’t really leaned fully upright from just a sitting position in 5 months or stood upright in 2 years. As a matter a fact I was eating flat on my back for at least a year.
Out of the Frying Pan – Into the Fire: Ouch I yelped!!! I had the worst pain I’ve ever felt in my chest. Doc came running over and did an ultra sound on me and he knew right away my lungs had collapsed. He said I had to spend the next few days in the hospital in case my lungs fully collapsed. When I got to the hospital they said my lungs were 15% collapsed on the left and 10% on the right which is known as a pneumothorax. They also discovered that I had pancreatitis.
But they told me my insurance company was refusing treatment and they were sending me home. Once again was I surprised, well, not really. In all my years of having this disease I don’t think the traditional medical community has helped me in any way.
Back to my apartment I went. This started my final spiral that would last about 2-3 weeks. Man, when I say my body was dead, I mean totally dead but with a heart beat. Doc could only feed me because of my lungs. During this time my blood pressure dropped down to 80/40 and I lost an additional 14 pounds. I was now down to roughly 101.
At this point I was literally numb, didn’t really have any sense of touch, smell or sight. I was almost comatose. Doc stands over me and says.. “Have faith, even more faith than me. You gotta fight, you gotta fight!” So I DID FIGHT and continued to fight as doc began treatments again after about 10 days.
“A Blob of Fat!”: The Renewal Begins – It’s now a few weeks later – early January, 09. I’m laying in bed and I feel this blob of fat on my tushy. I also could kinda see the walls around me!! I look up at this plant hanging in my room and I start saying PLANT out loud. Then I start spelling P-L-A-N-T right afterwards. I looked at the door and did the same thing. D-O-O-R. Then the window and so on. What the heck is going on!!?
Doc comes over and he looks at me and says “You’re CURED!! You’re gonna keep on gaining weight and your brain is retraining itself. You’re just gonna keep on improving. It will be like a train that keeps chugging along the path of wellness until you’re FULLY HEALED!!” He laughs and goes “Chuga, Chuga my friend.” Well, as amazing as that sounded I still was in disbelief considering I still felt so horrible.
Doc was right, though. A few weeks later I could lean up to eat for the first time in two years!! I could look at light for brief periods so I eventually took the blankets off the windows. That was so cool, I could see nature again and how beautiful it was. Then my noise intolerance slowly went away. I could only lean up completely for a few minutes but it was so great. Then I started to read just a few words again. Then I could speak a few clear sentences here and there by the end of January.
The Train Keeps Chugging: Walking and Talking: I was also well enough to go into the doctor’s office very gingerly, being able to walk about 15 feet slouched over. Then came the day I stood straight up for the first time in almost two years, perfect posture and I walked 20 feet just like that!! Then I walked 30 feet, then half-way around the building, then I made it all the way around the building!!! I was beginning to see very well again and the psychosis and dementia began too lift.
Driving: By early February on our way out the door to docs I grabbed the car keys out of Krystals hand. My goodness, you should have seen the look on her face!! Sure enough I drove 20 minutes to docs with Krystal shitting her pants the entire way there!! Yes I drove, was I ready for Nascar? Probably not.
I also went into a public place again for the first time. Yea, it was only a speedway gas station but again it was so darn exciting!!! I asked the lady at the counter if I seemed normal and she chuckled. Wow, that was such another wonderful day for me. Over the next several weeks I would continue to rehab my brain and body and relearn the world!!
Back on His Own: On April 5th Krystal calls my dad and says Jay has passed, 6 months after diagnosis. At this point I could show emotion and was so sad. Dad told me Krystal was gonna miss a few days. He said, “Who are we going to get to take care of you?” I looked at dad and said “I think I’m ready to be on my own again.” Dad said “Are you sure? I said “Yes”. Gosh, Such a twist of fate, what a bitter-sweet time it was for me. God Bless Jay and Krystal. Dad took $700 out of his next paycheck and bought me a car. That marked the day I was really free again. 14 years of bondage were over. 14 years a prisoner to M.E gone.
[fright]
[/fright]I don’t have much in the form of wealth anymore. I’m far removed from those days living on the beach running my own business. I have a beat up old car and a crummy old apartment in Ohio. No furniture except for my bed in my room and a platform in the living room I write on, using my old wheelchair for a seat when eating and writing. Most of my personal belongings got lost along the way.
I looked at dad and said “I think I’m ready to be on my own now I’m now 80% functional and expect to be nearly 100% in 6 more weeks. I can basically do what any healthy person can do. Life is grand, more grand than it ever was. I’m full of faith and want others to have faith as well. This time around I hope the world will really…LISTEN TO M.E.
May 10th, 2009
2015 Followup - So long as Mike engages in aggressive pacing and occasional neural therapy, he remains well and at about 85-90% of normal functioning. So long as he paces he is able to exercise, work and interact socially.
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.
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.
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.
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.
Part II: Implosion
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.
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.)
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.
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.
Test Results From March 2008
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.
[fright]
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.
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.
Back 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.
At this point I could only stay conscious when I was stimulated so he put his hands on my shoulders to awaken me. I could only mumble a few words for a short period of time. After I was done mumbling that I’m sick with mercury poisoning and a bunch of viruses I said “I have M.E,” the doctor looked at me and said in a very gentle voice. “I’ve seen this before and I know I can cure you. I’m a 99% shooter when it comes to curing patients who come in to my clinic.
He looked over at my Dad and said “Your son does have M.E and everything he has said is correct.” I said how are you gonna cure me? and he looked at me and said “All you need to do is have faith and just LISTEN TO M.E. !! ” Which I did.
I would not see him for another several days as we were awaiting test results. He took the results very seriously. At this point I weighed 115 pounds and the tests indicated that I was in organ failure in virtually all my organs including being inundated with mold and worms in my liver.
A few days later he arranged for me to go to the hospital to get a pic line placed so that I could be fed intravenously. That night I got home from the hospital and my doc was at my house waiting for me. Doc said we didn’t have enough time so he was gonna start coming to my house to feed me at night and start my treatment. I overheard my dad say the first office visit was $500 and he could not afford the doctor so I told my doc that. Doc said “Don’t worry about the money”.
A few days after my doc started treating me I told Krystal that I wanted to go to the clinic one day. Boy, was that a mistake. When I got to the office I tried to lean up. I hadn’t really leaned fully upright from just a sitting position in 5 months or stood upright in 2 years. As a matter a fact I was eating flat on my back for at least a year.
Out of the Frying Pan – Into the Fire: Ouch I yelped!!! I had the worst pain I’ve ever felt in my chest. Doc came running over and did an ultra sound on me and he knew right away my lungs had collapsed. He said I had to spend the next few days in the hospital in case my lungs fully collapsed. When I got to the hospital they said my lungs were 15% collapsed on the left and 10% on the right which is known as a pneumothorax. They also discovered that I had pancreatitis.
But they told me my insurance company was refusing treatment and they were sending me home. Once again was I surprised, well, not really. In all my years of having this disease I don’t think the traditional medical community has helped me in any way.
Back to my apartment I went. This started my final spiral that would last about 2-3 weeks. Man, when I say my body was dead, I mean totally dead but with a heart beat. Doc could only feed me because of my lungs. During this time my blood pressure dropped down to 80/40 and I lost an additional 14 pounds. I was now down to roughly 101.
At this point I was literally numb, didn’t really have any sense of touch, smell or sight. I was almost comatose. Doc stands over me and says.. “Have faith, even more faith than me. You gotta fight, you gotta fight!” So I DID FIGHT and continued to fight as doc began treatments again after about 10 days.
“A Blob of Fat!”: The Renewal Begins – It’s now a few weeks later – early January, 09. I’m laying in bed and I feel this blob of fat on my tushy. I also could kinda see the walls around me!! I look up at this plant hanging in my room and I start saying PLANT out loud. Then I start spelling P-L-A-N-T right afterwards. I looked at the door and did the same thing. D-O-O-R. Then the window and so on. What the heck is going on!!?
Doc comes over and he looks at me and says “You’re CURED!! You’re gonna keep on gaining weight and your brain is retraining itself. You’re just gonna keep on improving. It will be like a train that keeps chugging along the path of wellness until you’re FULLY HEALED!!” He laughs and goes “Chuga, Chuga my friend.” Well, as amazing as that sounded I still was in disbelief considering I still felt so horrible.
Doc was right, though. A few weeks later I could lean up to eat for the first time in two years!! I could look at light for brief periods so I eventually took the blankets off the windows. That was so cool, I could see nature again and how beautiful it was. Then my noise intolerance slowly went away. I could only lean up completely for a few minutes but it was so great. Then I started to read just a few words again. Then I could speak a few clear sentences here and there by the end of January.
The Train Keeps Chugging: Walking and Talking: I was also well enough to go into the doctor’s office very gingerly, being able to walk about 15 feet slouched over. Then came the day I stood straight up for the first time in almost two years, perfect posture and I walked 20 feet just like that!! Then I walked 30 feet, then half-way around the building, then I made it all the way around the building!!! I was beginning to see very well again and the psychosis and dementia began too lift.
Driving: By early February on our way out the door to docs I grabbed the car keys out of Krystals hand. My goodness, you should have seen the look on her face!! Sure enough I drove 20 minutes to docs with Krystal shitting her pants the entire way there!! Yes I drove, was I ready for Nascar? Probably not.
I also went into a public place again for the first time. Yea, it was only a speedway gas station but again it was so darn exciting!!! I asked the lady at the counter if I seemed normal and she chuckled. Wow, that was such another wonderful day for me. Over the next several weeks I would continue to rehab my brain and body and relearn the world!!
Back on His Own: On April 5th Krystal calls my dad and says Jay has passed, 6 months after diagnosis. At this point I could show emotion and was so sad. Dad told me Krystal was gonna miss a few days. He said, “Who are we going to get to take care of you?” I looked at dad and said “I think I’m ready to be on my own again.” Dad said “Are you sure? I said “Yes”. Gosh, Such a twist of fate, what a bitter-sweet time it was for me. God Bless Jay and Krystal. Dad took $700 out of his next paycheck and bought me a car. That marked the day I was really free again. 14 years of bondage were over. 14 years a prisoner to M.E gone.
[fright]
I looked at dad and said “I think I’m ready to be on my own now I’m now 80% functional and expect to be nearly 100% in 6 more weeks. I can basically do what any healthy person can do. Life is grand, more grand than it ever was. I’m full of faith and want others to have faith as well. This time around I hope the world will really…LISTEN TO M.E.
May 10th, 2009
2015 Followup - So long as Mike engages in aggressive pacing and occasional neural therapy, he remains well and at about 85-90% of normal functioning. So long as he paces he is able to exercise, work and interact socially.
