"Listen To M.E." : An ME/CFS Patient Recovers
(May, 2009)
The next thing I expected to hear about Mike Dessin 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
early May I got an e-mail from him. This is what he told me...
LISTEN TO M.E.
Yea, I had asthma, a good amount of anxiety and chest infections twice a year but I was never too sick to stop from running cross
country, playing basketball, hanging out with friends and doing all the things
any normal kid would do.
"(I was) never too sick to stop.. from running cross
country, playing basketball, hanging out with friends and doing all the things
any normal kid would do."
Our family's best friend was a doctor, so we always got excellent
treatment when someone in my family would get sick. I grew up in an upper middle class
neighborhood and had a fairly normal family. I
would say I had an above average life as a child and through adolescence.
In the late summer of 94', just before my second year at the University of
Cincinnati was to begin, I got that flu. The only real symptom I had was
a 104 fever. I remember it so vividly, because my girlfriend had to soak me in ice for
hours each day.
Luckily the fever went away and I was glad to be normal again until I decided to
go for a jog a few days later. I had a sharp pain in my heart and felt
disoriented afterwards. Then several weeks after that I
developed some fatigue and had some mild panic attacks. I went to the
University doctor to let him know something just didn't feel right. After his
evaluation he said I had allergies. I told him I'd had allergies my entire life
and never felt this way before. He told me not to worry. It seemed like I was getting under his skin. So
on my way I went.
None of that stopped me from having my college fun. I was in a
fraternity, had a bunch of friends and was extremely popular. Even with those
additional odd symptoms I made it thru college in five years. Then it was off to California to live the dream life.
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. Viral Test Results
From 2003
Little did I know I had one of the most debilitating diseases on the planet.
Little did I know but I was accruing virus after virus, huge amounts of toxins
and just a tremendous amount of neurological damage.
Little did I know I had one of the most debilitating diseases on the planet.
...and was accruing virus after virus, huge amounts of toxins and a tremendous
amount of neurological damage
Anyway it's the summer of 2005, I'm 30 years old and my mom gets diagnosed
with lung cancer. I decided to buy a video recorder and tape my life. I taped
everything - from me at work, me socially, mom and dad at home in Ohio,
grandparents in New York and just life in general. Mom dies Feb 25th, 2006.
After my mom's death the symptoms I had since my initial infection gradually got
worse and I had a new one - unrelenting vertigo and I couldn't drink alcohol
anymore. So I decided to see an herbalist. This was my first venture into the
world of natural medicine. For the next five months he would treat me to no
avail. Soon I would start getting these 'panic attacks', well, not really panic
attacks, they were much worse, it felt like anytime I would have to talk to
customers at work my nervous system would get 'sick'. This was unusual because I
made my living speaking with people. Furthermore I started getting clumsy;
fumbling things, walking into walls. I started spelling words backwards and
with double letters as well. Holding my pen for more than ten seconds became a
chore.
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 Oct 2006 I had to quit the company I had spent several years building. In
November my grandpa passed and I had to make a trip from California to New York
to make living arrangements for my grandma.
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 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.
They stripped searched me for drugs, made me put on a green
gown... the warden...said "we were all nuts."
I could barely function when I was admitted but was clearly sane. Man,
this place was scary, just like the movies. Just real chilly and dark with an
evil looking warden. They stripped searched me for drugs, made me put on a green
gown and interview with the warden. I told her my disease, even had her
speak to my naturopath to confirm my diagnosis. She said "we were all nuts." So
after my interview she loaded me up with drugs - Haldol, a antipsychotic drug, and
Ativan - very high amounts.
Well, I certainly slept for the first time in a while. Just like a 1000 pound
elephant would have slept on all that medication. The next morning she decided
to let me go after another interview but not before telling me I slept so well
because I was psychotic and that's why the medicine worked. I told her I was
sick not psychotic but she didn't LISTEN TO M.E.
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.
My caretaker quit so I asked the doctor to call my friends for me and let them
know what's going on. Well he called alright and told them I was crazy!
I had no other options
but to call a nursing home and off to the nursing home I went. Mind you six months earlier I was
running a business. Now I was a 32 year old in a nursing home. I would spend
the next 30 days in the home. The youngest person besides myself in the home was 71.
Now I was starting not to be able to tolerate light or noise.
While I was in the home my neurological issues began to get worse. Now I
was starting not to be able to tolerate light or noise. You would think in an
old folks home all would be quiet - well that's not the case. Most of them are
hard of hearing so they speak very loudly and the assistants there speak loudly
as well. Not to mention they all had their TV's on full volume. They just could
not understand how a human being could not listen to noise or be sensitive to
light. This got the coordinator very suspicious about my mental stability.
So
before you know it a middle-aged women I had never seen, walked into my room and
started drilling me. I told her I had M.E./CFS and gave her a pamphlet on the disease. Sure enough.. ..she was from the state psychiatric social
services department. She said that I had problems and she was gonna have to make
arrangements for me. Oh God!! I knew what those arrangements would be. She said she
would be back in 3 days to get me after she got approval from her superior.
Well, I frantically started dialing all my friends to come drive 6 hours and get
me. Finally I had a taker, one of my good girl friends. Back in California
I had no choice
but to stay in a hotel. Unfortunately my health continued to deteriorate
as now I was developing food and chemical sensitivities. I started trying dozens
of different foods but my body could literally only tolerate squash, yellow
squash to be exact.
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 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. 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 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.
We made one more call to a friend of mine and an independent ME/CFS researcher.
He looked at my profiles and sure enough he said that it would be best to go to
the hospital as my body was literally starving.
Since I was back in Ohio I said to my dad let's at least call Steve - our
family doctor and Dad's best friend. He said he would only treat me if I came in. I was extremely hesitant.
The staff was so sweet when I arrived. They all knew me and took care of me
since I was a little boy and sure enough when I got there the environment was
perfect for me. They actually dimmed all the lights.
Well, here comes Steve yelling "Turn on
the lights!" Tell's Carol to get out of the room, turns on the lights - to which
I had put on very dark sunglasses again - and tells me "I've dealt with this
before and I'm gonna put you on anti-depressants that's the way I treat this." I
was shocked....I told him I'm not depressed and I understand that those
medications have helped some people in the past in certain situations but I'm
starving and very sick.
I handed him all of my nutritional information and all my past blood tests. He
browsed through them in 30 seconds, scoffed at me and said they were all normal.
I told him I'm starving, I can't eat without having a serious reaction and worst
of all my throat would close up. He told me to start eating and then said "Now
you need to get out of my office so I can do my rounds at the hospital" I said "Please, Steve just LISTEN TO M.E." but
he wouldn't.
"I've dealt with this
before and I'm gonna put you on anti-depressants that's the way I treat this."."
Later that week my dad called 911 to take me to the hospital as I could
barely function. I told the doc who evaluated me that I had malnutrition because I
can't eat due to my chemical sensitivities. I knew there weren't any treatments she could do to help my disease so I only
asked for I.V. feeding. She seemed somewhat compassionate and they hooked me up to a saline bag.
Then she told me she would see me in the morning for further
evaluation. ation.
Well, the next morning I could hear arguing outside my room. It was my dad and the
doctor going back and forth. Turns out Steve was listed as my doctor and Steve told her I was psychiatric. She told my dad I had ADD and was
psychiatric and they were gonna release me.
My official weight at the hospital was 114pounds... 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 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.
He looked over at my Dad and said "Your son does have M.E and everything he has said is correct."orrect."
AAt 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. WE
NEED THESE TESTS.
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.
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 intravenously 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.
Doc stands over me and says.. "Have
faith, even more faith than me. You gotta fight Mike, you gotta fight!"
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.
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.
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 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. 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.
"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 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.
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
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 Mike proposes. Nor did this
person just pop out of nowhere - he frequently interacted on ME/CFS forums
before he became too ill to do so. Rich Van Konynenburg, the creator of the
Methylation-Glutathione theory of ME/CFS interacted closely with this person as he
became more and more ill.
"I began to be aware of the details of " X's" condition when
he wrote to me shortly before Christmas, 2007, though I had read posts from him
to the ME/CFS internet groups prior to that time. He was one of the most
seriously ill PWMEs I have encountered in 13 years of trying to help people with
this disorder. His condition was such that nothing I could do was adequate to
help him. He needed intensive onsite care and special, tailored treatment from
qualified medical personnel.
I attempted to find people in his area who could
and would come to his home to help him, and I communicated with several doctors,
to no avail. As time went on, his condition became even more grave. What we
could do was to pray for him, which we did.
At the darkest hour, in November,
2008, a physician who was willing and able to help him was found, with the help
of a friend. The treatment he subsequently received was extraordinary, and the results have
been profound. My hat is off to that physician, and also to the Physician
upstairs.
" Rich Van Konynenburg
Of course, the big question is who this treatment will work on? Mike did not have a typical case of ME/CFS. (But then again what is a typical case?). 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're not so different from the
ones 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 - certainly in much lesser amounts
- in many people in the
ME/CFS community.
What Now? Mike's desire is to provide hope and to find ways for
patients, particularly the less well off, to access this treatment, 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).
The Protocol: the doctor uses
his own version of a technique called neural therapy that traditional western minded doctor's probably wouldn't
touch with a ten foot pole. He believes that the body’s response to a
viral infection, probably one or more strains of coxsackie virus and possibly
CMV, alters the functioning of the amygdala and other areas of the brain
adjacent to it resulting in the deregulation of the autonomic nervous system,
HPA axis and immune functioning. The therapy is designed to re regulate
psycho-neuro-endocrine-immune function so that the person can return to a
healthy state of mind and body.
The doctor uses various treatments that integrate osteopathic, eastern
acupuncture and homeopathic principles. A primary focus is a technique
frequently used in Germany called ‘Neural therapy’ that has gained a margin of
acceptance by the work of Dr. Klinghardt here in the U.S. His unique
contribution to the neural therapy field has been his application of homeopathic
formulas in place of the anesthetics usually used in neural therapy. These
formulas are hand-picked on a day-to-day basis and are injected into neural
points to return balance to the neuro-muscular-endocrine response and fight off
the infection. He also utilizes prolotherapy, laser therapy, intravenous
nutrient replacement and other techniques that help revitalize the competency of
the body as a whole.
We see four roadblocks to this therapies acceptance.
- Legitimacy - Mike 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. He 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 he 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 altered them significantly.
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.
Some practitioners do have experience in the 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 Mike 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 all of his
weight, he's 90% recovered
Eight weeks ago he went jogging for the first time. Now he's working out
for over an hour at a time at the gym without issue. He made his first cross-country trip
in an airplane with no side effects. His intolerance to alcohol has disappeared.
Is it too good to be true? We'll see.
(We are following the progress of a few patients in his clinic.
We did so on a public group for almost six months - that group was shut because
the patients no longer felt comfortable expressing themselves given the vigorous
efforts of a few individuals to promote this as a scam.. Six months down the
road several have improved significantly but are not nearly healthy. One has
minimal progress. None have experienced a miraculous recovery comparable to
Mike's. This is an expensive, time consuming treatment. The Doctor is not
accepting new CFS patients. )
July 10th, 2009 Cort Johnson