“Listen To M.E.” : An ME/CFS Patient Recovers (May, 2009)
“Listen To M.E.” : An ME/CFS Patient Recovers (May, 2009)
The next thing I expected to hear about this person was that he was dead. 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. That was over a year ago. About three weeks ago I got an e-mail from him. This is what he told me..
LISTEN TO M.E.
Yea I had asthma, good amount of anxiety, chest infections twice a year just in time for fall and spring. I guess you could say growing up I certainly had some signs of auto-immune issues. 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.”
Luckily our family’s best friend was a doctor, so we always got excellent treatment when someone in my family or I would get sick. I grew up in an upper middle class neighborhood and had a fairly normal family, I hesitate to say normal or perfect family because I’ve never seen a perfect family except on Leave it to Beaver. 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, heck more like meningitis that wasn’t. The meningitis that wasn’t lasted about 1 week. The only real symptom I had was a 104 fever. I remember it so vividly, my girlfriend had to soak me in ice for hours each day and I refused to go to the hospital.
Luckily for me the fever went away and I was so glad to be normal again or so I thought. Well, that was until I decided to go for a jog a few days later. What the heck was this? I had a sharp pain in my heart and this weird feeling afterwards that I would soon know as post-exertional malaise. Kinda felt like my brain was being deprived of oxygen leaving me with a very disoriented feeling afterwards that would last from minutes to sometimes days. I always still tried to work out even though many days I would just walk in the gym and leave a minute later because I would get that ill feeling upon the most minute amount of exertion. Then several weeks after that fever 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 had allergies my entire life and never felt this way before. He told me not to worry and it was nothing else.
It seemed like I was getting under his skin. So on my way I went.
I wondered why the doctor didn’t really pay attention. Why he didn’t really LISTEN TO M.E. Well, anyways, it seemed like I was getting under his skin. So on my way I went.
Well, none of that stopped me from having my college fun as I was in a fraternity, had a bunch of friends and was extremely popular. Even with those additional odd symptoms I still made it thru college in five years and had an above average college life. Then it was off to California to live the dream life. I always wanted to get away. (Or was it deep down I was thinking that these weird symptoms might go away if I Iived somewhere else? Was I just trying to run away from something that was impossible to get away from?) Regardless I made the leap from Ohio to California.
Boy, did I live the dream for the next 7 years. I was renting a beautiful house seven houses away from the sand in beautiful Newport Beach which is between L.A and San Diego. 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. I used to always hear “Mike, you’re so down to earth, so normal, such a good guy.”
Life was nearly perfect except for my odd ball symptoms which I had kept a secret from family and friends. At this point I had about 20 just very wierd symptoms which mostly equated with folks who have mild M.S. I was 85% functional and just as in my college days I would never really let those nagging symptoms get the best of me throughout my twenties.
Little did I know I had one of the most debilitating diseases on the planet. …and I was accruing virus after virus, huge amounts of toxins and a tremendous amount of neurological damage
I had gone to the doctor on a few occasions and mentioned my symptoms and they always said stop being a hypochondriac, it’s allergies, you’re normal, here’s an anti-depressant. But surely there couldn’t be anything really wrong with me? The docs have all this knowledge so I thought they’re right – I’m just complaining about nothing, really. Little did I know I had one of the most debilitating diseases on the planet. Little did I know I was accruing virus after virus, huge amounts of toxins and just a tremendous amount of neurological damage even though I seemed to have above average intelligence. Little did I know I had a disease called Myalgic Encephalitas/Encephalomyelitis which is better known by it’s abbreviations, M.E.
All the chronically activated virus they found on my blood work throughout the years was just no big deal to the docs. “Oh, it’s just chronic Epstein Barr” or “You might have CFS which is no big deal.” they’d say. I wondered why the docs always referred to Epstein-Barr when my tests consistently showed several other active viruses such as CMV, HHV-6, HHV-7 not just Epstein-Barr. Gosh, I was just looking at my Mycoplasma Pneumonia titers from several years ago and it showed 871 when the normal range is 0-200. Surely doesn’t sound like it’s just chronic Epstein-Barr to me?
I just felt like something might be really wrong all along…But the docs just wouldn’t LISTEN TO M.E.
Anyways, summer of 2005, I’m 30 years old and my mom gets diagnosed with Lung Cancer. Yea, they cut her open, did radiation and chemotherapy – all the stuff people associate with treating cancer. I decided to buy a video recorder and tape my life, little did I know this would be my last year seeing mom and my grandparents. As well as the last year on my feet. 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. This was just 8 months after she was diagnosed.
After my mom’s death the symptoms I had since my initial infection gradually got worse and I had a new symptom, unrelenting vertigo. Also I just 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 just get so sick, like a panic attack times 100. This was unusual because I made my living speaking with people. Furthermore I started getting clumsy; fumbling things, walking into walls. I had absolutely no balance or coordination. Holding my pen for more than ten seconds became a chore.
The neurological dysfunction would become so unusual and obscure that I really am gonna have trouble finding words to describe it.
In Oct 2006 I had to quit the company I had spent several years building. Later that month I began a neurological windfall that only those with the severest form of M.E. MIGHT be able to understand. I wouldn’t wish it on my worst enemy!! The neurological dysfunction would become so unusual and obscure that I really am gonna have trouble finding words to describe it. Actually there are no words to describe it except pure human torture minute to minute, day to day and so on.
In November my grandpa would pass and I had to make a trip from California to New York. This was very bad timing, however I had too force myself to go as he had made no will for my grandma and I needed to make living arrangements for her. At this point I started getting severe brain fog and gait problems and I noticed I started spelling words backwards and with double letters as well. Just very very odd stuff. So off I went to New York with severe exhaustion/weakness and all the other issues I had mentioned earlier. Well, I wound up making it there and all went according to plan with my grandma but not with me.
While in New York for the funeral I fell down face first with exhaustion in the hotel lobby!! My dad knew I was sick but didn’t really know to what extent or what M.E/CFS was. Anyways he 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 CFS which is Chronic Fatigue Syndrome abbreviated. That I most likely I had a form of it called Myalgic Encephalitas(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.
Anyways 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 lady! 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, at which I could barely function due to brain fog and exhaustion she loaded me up with drugs – Haldol, a antipsychotic drug, and Ativan. Very high amounts and I hadn’t even had anything like those before. 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 didn’t LISTEN TO M.E.
They stripped searched me for drugs, made me put on a green gown… the warden lady…said “we were all nuts.”
Back to California I go. I could no longer really take care of myself on a regular basis but luckily there was a girl renting a room in the house I was staying at who was kind enough to help me. 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.
I called my dad to go to a promising clinic with me and let him know what was going on with my health. I just wanted someone to at least tell him that his son had M.E/CFS. Well dad came out to California and went to the clinic with me. 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 somewhat sick and not really psychiatric like the warden in New York had told him. 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 !
The truth of the matter, was that I was loaded to the gills with mercury that had been released during my treatment – so I literally was suffocating in my poisons. There was just no helping me, my body could not detox normally!! I had told my dad and the clinic that I was not crazy, I was sick. But nobody would LISTEN TO M.E.
Then I heard about a MD/Naturopath in Arizona which was 6 hours away. I decided with all my effort I would give it one last shot. The doc said I would be there a few months and that he could cure me!!! So I decided to completely move out of the house and stay at a hotel in Arizona. Well, 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. Not only did I get sicker physically but my brain fog turned into a thing of the past leaving me with a much higher level of neurological dysfunction.
Well, at this point my caretaker decided to quit on me 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 wasn’t crazy, just extremely neurologically impaired from the toxins and my viral load and didn’t react positively to his treatment. The doctor, however, took it personally. He refused to believe or try to treat me anymore.
At this point I was at about 30% functional. 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 in utter confusion. I had to use a wheelchair for the first time. The wheelchair would be short lived because my POTS got too severe for me to even sit up in a wheelchair.
And now I had no one to take care of me. Not only that but I had no one too pick me up from Arizona because all my friends thought I had gone mad. I told the doc I needed help, that I had M.E and to please just LISTEN TO M.E. but he wouldn’t.
So I was all alone at this hotel in Arizona unable to care for myself and unable to get a service who would take care of me in a hotel. I had no other options but to call a nursing home. There was only one in town that would accept folks under 58 I believe. Ten minutes later a seemingly nice lady showed up. It was the coordinator of the nursing home. She said they had a room available and all I needed was too get a TB X-Ray and I was in. Well, all looked good with the TB X-Ray and off to the nursing home I went. Mind you six months earlier I was running a business and 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. I actually roomed with an 81 year old lady who couldn’t understand why I was unable to join her every Thursday to play bingo. Truth is I didn’t have enough physical or neurological energy to play bingo. Yep, it was actually too complicated for me.
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 even 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. I started begging them to keep it down for me but 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 with questions.
Being as neurologically incapacitated as I was it was difficult answering any question. I just told her I had M.E./CFS and gave her a pamphlet on the disease which she dismissed. 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. “I’m sane I’m just sick with a compromised immune system” I tried to tell her. She said she would be back in 3 days to get me after she got approval from her superior.
The next day at the house they started serving my food partially frozen. When I asked why they weren’t cooking my food all the way they said “This used to be a happy house before you arrived and we want you out” I said I’m sorry, I’m just starting to suffer really bad and I need you guys to please understand. Please just LISTEN TO M.E. But they wouldn’t.
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. She showed up the following day and I was off to California again.
But this time I had a big problem. I had nowhere to stay once we got to California. I couldn’t hear noise, see light, walk more than ten feet and had a host of other symptoms. I had no choice but to stay in a hotel when I got there. Well, I wound up living in a hotel for 2 months!! It was miserable but at least I had a caretaker who was fairly accepting of my odd limitations. He put blankets on the windows and got me a good pair of wax ear plugs. Unfortunately, while in the hotel 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. Furthermore I was starting to have a hard time reading and writing on the computer. My eyes could see the words but my brain just could not comprehend them; off and on I could not read anymore.
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.
Then one day I was watching T.V with the volume very low and all the sudden my brain had this scrambling reaction when I looked at the screen !!! It was so horribly awkward and debilitating that it’s hard to describe to someone who hasn’t experienced it. I would roll around squealing like a pig in agony just from watching 3 seconds of T.V. (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 input including light, noise and images would all get jumbled and distorted throughout the brain. To make matters worse this distortion had a ripple effect right thru the spinal cord. 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. So, to add to all of my discomfort I could only read or write for brief periods of time. Plus I couldn’t watch T.V or listen to the radio anymore. This would soon bring me into the next 16 months of complete isolation.
Well, I started to run out of money and had no other options except to return back to Ohio where my dad would rent me an apartment. With my last bit of money my care taker was kind enough to take me to Ohio. I didn’t have enough money for the entire trip so he fronted some money which I still owe him for. So blind-folded and with my ear plugs in, off to Ohio I went. The ride to Ohio was difficult and my condition did worsen on the way but I had no other choice.
Ok, so I’m back in Ohio where my dad was kind enough to get me an apartment and new care taker. However, he still could not understand what was wrong with me because no doctor had ever told him I had a disease that could be so debilitating.
At this point I was living in a complete black room 24 hrs a day with not a bit of noise and rarely using the phone as I was too weak. Plus the vibration of my voice when on the phone would stimulate my spinal cord a bit too much. The only time I really had to use the phone anyway was during my attempts to find someone too help me – but I was running out of options. I was 150 lbs and losing weight fast as I couldn’t eat hardly anything. I was around 15% functional.
I would later find out what was happening was that I was going into dementia.
Then I had a new symptom – as I whispered to my care taker – “I’m having a hard time seeing around me and I kinda feel like I’m 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. (Even though I would never have a reason to go to the closet anymore). I would later find out what was happening was that I was going into dementia. My dementia would continue to worsen. I couldn’t sit still for the same reason old folks walk around at night. IT’S VERY UNCOMFORTABLE to say the least. Over the next year it would continue to worsen to the point typically experienced by end-stage AIDS patients!!!.
Well, a year ago in April I had my caretaker contact an autism specialist who was very nice but did not now much about M.E. What was interesting, she told me that she had never heard of M.E. This is a lady who even though she was an autism expert, many patients in the CFS spectrum of illnesses had sought her advice. So it seemed odd to me that she had never heard of M.E. but not too outlandish considering the incredible lack of awareness surrounding this disease. The doctor couldn’t offer me much help, however she did authorize several nutritional tests and a genetic profile test to be done. So I sent in a hair and blood sample to the lab.
My results came back and showed I had no minerals or amino’s in my body whatsoever. The autism doctor looked at the results and recommended that I go to the hospital I said “No!”. She couldn’t understand why I didn’t want to go to the hospital. Well, my first experience with the hospital in New York had been brutal like I had mentioned earlier. But 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 how M.E. Patients with severe sensory overload need a controlled environment.
We made one more call to a friend of mine and a person who knew M.E/CFS fairly well. 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 who was our family doctor and Dad’s best friend. I really could not travel to his office because of all my limitations and I hadn’t been out of my bedroom in 6 months so I decided to call him and see if he could come over. I actually had called him from California about a year earlier when I was just getting very sick and I remembered he said there was no such thing as M.E., that I just had chronic Epstein Bar and it was no big deal like the other doctors had said. Well, anyways, I called him and he said he wouldn’t come over and that I needed to come to his office. He said he would only treat me if I came in. Well, he was very nice on the phone but I was so surprised that he wouldn’t come over. When I was kid having asthma attacks in the middle of night he would come right over. But now I was so deathly sick he wouldn’t come see me? Plus he only lived five minutes from my apartment.
I was extremely hesitant to go because I knew the repercussions of exceeding my physical limits could put me in a death spiral. I had my dad’s friend Carol call the office and let them know my limitations. At this point any light would scorch my eyes and the slightest noise was deafening. 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 and I came in the back door to a very close room like I had always done growing up.
“I’ve dealt with this before and I’m gonna put you on anti-depressants that’s the way I treat this.”
Well, here comes Steve, our family’s best friend, yelling and screaming “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.
I handed him all of my nutritional information and all my past blood tests. He browsed through a hundred pages 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” , Then he said before you leave I want to see you take this pill, which was an anti-depressant. I really didn’t want to take even one pill because I knew I might react badly to the chemicals. I placed the pill in my mouth and pretended to take it. At this point I was crawling on the floor on my way out of the office. I said “Please, Steve just LISTEN TO M.E.” in a real raspy voice but he wouldn’t.
Later that week my dad finally called 911 to take me to the hospital as I could barely function. O.K so we’re at the hospital and I’m getting my initial evaluation. I told the doc who evaluated me that I had malnutrition because I can’t eat due too my chemical sensitivities to food. Also that I had M.E which she didn’t know what that was so I said Chronic Fatigue Syndrome after that. I said I really came here to get nutrition, I’m starving!!! I knew there weren’t any treatments she could do to help my disease so I only asked for I.V. feeding at this point. I was seriously starting to go into a state of delirium from lack of nutrition. She seemed somewhat compassionate although I couldn’t really make her out very well because I literally had a hard time seeing or hearing the words come out of her mouth! They hooked me up to a saline bag which was at least a start. 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 she had called him.. Steve told her I was PSYCHIATRIC. (These doctors really like to stick together I’ll tell ya.) She told my dad I had ADD and was psychiatric and they were gonna release me. My dad said to the doctor I had M.E and explained what it was and that many M.E patients had severe sensory overload but she dismissed his comments continuously. Well ,she came back in the room and said “Mike we’re going to release you” and I begged in my real raspy voice again, please just LISTEN TO M.E.
I literally heard the other doc say to him I was nuts
Well my dad finally convinced her as she grew increasingly angry to have a G.I doc evaluate me. Well, they did let the G.I. doc come to my room. But before he came in I literally heard the other doc say to him I was nuts. My dad gave the G.I. guy my tests which were absolutely as bad as they could possibly be. The G.I. doc pretends to look at the tests from what my dad says, and the G.I doc declares my tests are NORMAL. He says “I should start eating.” I mumbled I try to eat but get very sick, I react to everything and my throat even closes when I try eating. Please LISTEN TO M.E!! The G.I guy was a real smart ass to my dad and just scoffed at us once again.
At that point I was becoming very ill and my dad wanted to get me out of there before I worsened anymore. Yea, hard to believe I actually had to leave a hospital so I didn’t worsen. By the way my official weight at the hospital was 126 pounds, don’t forget I’m 6’3. I was so sick and more than 50 pounds under weight but couldn’t get help. At this point dad was just so baffled. How could my son be so sick and dismissed by society and medical professionals alike? All dad’s friends would continually tell him I needed a psychiatrist or to just put me in a nursing home. In additon, anything he would ever hear from docs is his son is crazy. This included two or three home docs who would come to the house as well. Dad would eventually lose all his friends but he never gave up on me despite being confused about the situation and all the doctor’s opinions.
My official weight at the hospital was 126 pounds… I’m 6’3.
Back to the apartment where I made a few last desperation phone calls, which would be my last time on the phone for quite a while. My health started another descent for the next 6 months. This descent would take me to a world of suffering that without a doubt very few people have seen before and lived to speak of it. This descent would last until January, 2009.
Towards fall I remember asking a lady on my support group to please help. I gave her my number and she called my dad. You would think that she would totally try to help and LISTEN TO M.E. Instead she thought doing things her way would be best for me.
I won’t get into details, but the jist of the matter is that I’d told my dad I needed to be completely alone in my own apartment again. Sorry, I forgot to mention my dad had moved me in with him because he couldn’t afford my own apartment anymore. This lady told my dad I was selfish and didn’t appreciate the hand that fed me. “There was no reason for me to live away from him,” she said.
Well what she didn’t understand…..is that dad’s room was right next to mine and it was nearly impossible for him to be quiet enough for my safety. At this point I was in and out of consciousness, not sleeping but blacked out most of the day. 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 so sick. I hadn’t bathed in many many months and the walls around me were literally disappearing due to my dementia. Since my dad couldn’t get close to me, most days he would leave my food outside the door. I would crawl to get my food when I came to during the day.
I just needed to be even more isolated so my nervous system could heal but we couldn’t afford a caretaker plus my own apartment. 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!! There was no way we could afford both and my dad was too busy with his new job to take care of me at a separate apartment. Well 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. It kinda brought back memories of when my mom was diagnosed. However, unlike my mom, Jay had a very treatable colon cancer. Also I just learned that my grandmother who I had helped make living arrangements for when grandpa passed had just passed on as well. I was to 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 as she saw how sick I was. She was the most perfect caretaker we could have asked for..
By early November the suffering was just relentless and I was dying. 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. That was interesting my dad thought because he had never heard anyone say M.E besides what he read in literature and from me saying it. Even though this proclamation interested me somewhat, a few days went by before it kinda sunk in that there might be help on the horizon. It took a few days because I could barely think anymore and the reality of just being alive had faded away. Also, I had never heard of anyone being cured of M.E and I was set on the fact that after having M.E for 14 years that there was no cure.
A few days later I decided to take the leap of faith that would allow me to RISE FROM THE ASHES. In critically bad condition, to say the least, I crawled into my dad’s car – him leading the way because I was really unable to make out much of the surroundings. We arrived at the doctor’s office where I crawled my way into the lobby. I just laid in the lobby of his clinic until my name was called. Dad lifted me up onto the table and the doctor walked in.
He looked over at my Dad and said “Your son does have M.E and everything he has said is correct.”
At this point I could only stay conscious when I was stimulated so he put his hands on my shoulders as I laid on the examining table to awaken me out of my comatose state. I could only mumble a few words for a short period of time but I mumbled as much as my weak body would allow. After I was done mumbling that I’m sick with mercury poisoning and a bunch of viruses. I said “I have M.E,” which I proclaimed for the last time!! 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. As usual testing came back horrible but 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 throughout 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. The hospital stay was much easier because they were aware of my condition and the procedure was only about a half hour thankfully. So now I could at least be fed thru my feeding line. That night I got home from the hospital and would you believe my Doc was at my house waiting for me.
Well, Krystal was a caretaker but not a nurse so she didn’t know how to do IV’s and it was gonna take several days for the insurance company to approve a home nurse. Doc said we didn’t have enough time so he was gonna start coming to my house after he got out of work, feed me at night and start my treatment as well. I overheard my dad say the first office visit was $500 and he could not afford the doctor so I told my doc that when he arrived at my house for the first time. Doc said “Don’t worry about the money I’m more concerned about saving lives” NO SHIT!! Not only that that, doc would come over every night for 6 weeks in a row!!
A few days after doc started treating me I told Krystal who was still taking care of me and doing an amazing job that I wanted to go to the clinic one day instead of doc coming over. Boy, was that a mistake. When I got to the office I tried to lean up after he treated me and 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.
So the hospital staff came in and said they were sending me home and the Insurance company wasn’t going to pay!!
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 knew right away because he’s a former ER doctor so he has seen it all. 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 even discovered in the scan they did that I had pancreatitis which, as bad as that is, doc and I weren’t too surprised giving how sick I was!!
At the hospital they wanted to do a procedure in which they stick a tube in your chest; basically it’s done to help get air back into your lungs and lift them back up again. Doc told the staff I was too weak for it and to do a much more minor procedure. And that I needed to stay there for a few days evaluation afterwards in case my lungs fully collapsed I would be in a safe place. Well, they told me my insurance company doc and he was refusing treatment. So the hospital staff came in and said they were sending me home and the Insurance company wasn’t going to pay!!! This was ridiculous. The treatment would have killed me looking back. But to release me when I couldn’t hardly breathe or move my body an inch to the left or the right without having severe pains in my chest? 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 too 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.
Worst of all, doc could only feed me and not treat me for several days because of my lungs. If he treated me and my lungs collapsed I would die for sure or be on a ventilator at the very least. During this time my blood pressure would drop down to 80/40 and I lost an additional 14 pounds. I was now down to roughly 101. I say roughly because my doc’s recordings are at 106 but he knew I lost an extra couple pounds after that and I had clothes on when he weighed me. He would bring the scale over to my house. Not only that, my mitochondria were barely producing enough energy to sustain heart function. Yea, imagine not even producing enough energy to sustain heart function. I had to lay perfectly still, only moving slightly to use the restroom or my heart would start fluttering continuously. Furthermore, I needed to lay perfectly still so my lungs could heal on there own.
Doc stands over me and says.. “Have faith Mike, even more faith than me. You gotta fight Mike, you gotta fight!”
I was literally comatose at this point. I had all of the symptoms previously mentioned plus about 20 more. At this point I was literally numb, didn’t really have any sense of touch, smell or sight. Doc stands over me and says.. “Have faith Mike, even more faith than me. You gotta fight Mike, you gotta fight!” So I DID FIGHT and continued to fight as doc began treatments again after about 10 days.
Krystal was still coming every day and even helping take out my feeding I.V each morning. She was doing so great for me!! – really doing so much work for the doc as well to help keep me alive. I was so darn lucky that Jay had let his daughter help me so much.
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 hell is going on here? What the heck is going on!!?
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.
Doc comes over and I tell him what I just mentioned. He looks at me and says “You’re CURED!!, I promise. You’re gonna keep on gaining weight and your brain is retraining itself. You’re safe and OK. 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 felt so horrible still.
Doc was right, though. Sure enough the train would keep on going. 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. 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 as the lactic acid was fading off my neurons and the psychosis and dementia began too lift.
“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.”
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!!
On April 4th on our way back from docs office, Krystal gets a call that Jay only has a day or two to live!!! My god!! I asked Krystal how could your dad be that ill? Well my doctor had told Krystal a few months earlier to tell her dad, please do not get radiation or chemo that it would make the cancer spread and kill him, even though he did not have a very aggressive form of cancer. Well, Jay took the other route and listened to his oncologist that were appointed thru the doctors network and insurance he was provided. Sure enough Like mom, they cut him open, did radiation and chemotherapy. The next day 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.
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 again.”
Although yesterday dad comes over with tears in his eyes and says he found a tape I’d made. Sure enough it was the video I had decided to make of my life the year before I became severely ill. I know mom and the grandparents would be looking down with the biggest smile ever right 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
From the Editor This is the most astonishing thing I’ve heard in the five years I’ve been running this website. It’s so far beyond our conception of what the medical community can do for ME/CFS patients that it beggars disbelief. If so many people with a less severe case of ME/CFS can’t get help how is it that this person could recover – perhaps completely – in six months? It asks us to believe that one doctor somewhere in the United States has somehow gotten a very good handle at treating the most extreme cases of ME/CFS – something that’s understandably hard to swallow.
I would suspect that someone’s running some sort of scam. But this is not how one runs a scam. Scams work by focusing out isolated, vulnerable, usually ignorant people – not by testing them out on prominent individuals in a community – which, as you will see, is what ‘Patient X’ proposes. This person also didn’t just pop out of nowhere – he frequently interacted on ME/CFS forums before he became too ill.
Of course, the big question is who this treatment will work on? ‘Patient X’ – who wishes to remain as anonymous as possible as he recovers – in part to protect his doctor’s identify – did not have a typical case of ME/CFS. (But then again what is a typical case?) The infectious onset is familiar but some other aspects weren’t. He had a mild case of ME/CFS for many years but a stressful event kicked off more symptoms which lead him to seek more help. One treatment, in particular, left him horribly debilitated. (The doctor, interestingly told him afterwards told him “that is the risk we run” – he had seen that reaction before). After that he reacted badly to every treatment he tried (except the last) with his health taking an incredibly precipitous descent. Detoxification problems were critical arena for him.. Despite his high pathogen loads he believes that anti-virals probably would have killed him had he tried them. That’s obviously not true for all patients.
His symptoms reached a point that few, fortunately, ever have to face. If you take away their magnified nature, though, they are not so different from the ones that ME/CFS patients experience all the time; the exhaustion, the cognitive problems, the problems with stimuli and coordination, the orthostatic problems, and chemical sensitivities are all commonly found – in lesser amounts – in manhy people in the ME/CFS community.
What Now? “Patient X’ s” goal is to provide hope and to find ways for patients, particularly the less well off, to access this treatment and to provide safe facilities for them to use and ultimately to spread it beyond the small area it’s currently limited to. But there are significant problems. RIght now his doctor has his hands full treating the patients in his local area. (He is a Doctor of Osteopathy (DO); DO’s are licensed medical doctors (i.e. M.D.’s) who specialize in the muscoskeletal system and focus more on preventative medicine. As with allopathic doctors (M.D.) they are licensed to prescribe drugs and perform surgery). He uses his own version of an unusual technique that tradional western minded doctor’s probably wouldn’t touch with a ten foot pole. He has his license to protect; something that could be in jeopardy if the headlines started appearing stating “Dr. Claims Miracle Cures of Near Dead Patients!”. But he also recognizes that if he really does have a fix on how to treat these patients that this information needs to get out. If we can find a way to help him safely do that he is willing to try.
We see four roadblocks to this therapies acceptance.
- Legitimacy – ‘Patient X’ is confident that this approach has widespread applications but until the patient community sees more people that it knows become well it’s scope will naturally be limited.
- Cost – This is a hands on, time and labor intensive approach which means it’s relatively expensive. ‘Patient X’ was given the treatment pro-bono – but any doctor can only do that so many times. This limits it’s scope to more well-off patients something that ‘Patient X’ finds unacceptable.
- It’s Unique Nature – The unusual treatment approach presents a biggest challenge to it’s widespread use. This is the only doctor in the US, so far as we know, that does this type of treatment! Other doctors use some similar procedures but he has apparently tweaked them significantly. (It almost couldn’t be worse – lone doctor practicing his own brand of medicine – nothing comes easy in this disease!).
- The Doctor’s Concerns – we all know the difficulties alternative minded health practitioners can have with the FDA. If this treatment is effective across a broad range of ME/CFS patients it’s important that (a) this doctor be protected while (b) his protocol gets disseminated safely.
Our Plan – We have a steep road to climb! Our first goal is to document its effects. To that end we’re attempting to enroll members of the ME/CFS community who we can follow through the process and document their progress. It takes several weeks at a minimum to produce significant effects. Because we’re trying to document this treatments effectiveness we ask that you be willing to go public with its effects. E-mail me if you’re interested. Basically we’re in a our ‘treatment trial’ stage.
It may be that this procedure will always be – at least in the United States – a kind of ‘back-door’ treatment option. Since it takes considerable skill, training and experience to master it’s not something an MD can pick up quickly. There are, however, a considerable number of practitioners who do have experience in some of techniques the doctor uses. Interestingly this doctor’s model of this disease, so far as I understand it, fits in well, with other theories regarding this disease – it’s his treatment approach that’s so different.
How is patient X doing right now? The road back has been exhilarating to be sure but not easy at all. He started the treatments in late November of last year and takes them twice a week now. Periods of progress have been interspersed with down cycles – something his doctor says is a natural part of the healing process. On his four steak a day diet (!), though, he’s recovered most of his weight, he’s almost 100% functional and he reports he’s almost symptom-free – right now he’s simply continuing to rebuild his body. Two days ago he went jogging for the first time – “No problem” he said.
Next Up – We go over the doctor’s theory of ME/CFS and post Patient X’s test results; before and after.
Cort Johnson1 comment