2 years update !
(may 2 2014 it will be 2 years since I started)
Sometimes I get asked about the list of diagnoses, here it is;
- Cronic asthma/Bronchitis,
- Lungtissuedamages after EDS, Scartissue after many pneumonias, Left lung especially damaged
- Spinal damage, paralyses,
- Cronic sciatica after operation
- Nervemuscular damaged to the urinbladder after operation
- Interstitiel Cystitis;/Painfull Bladder Syndrom
- Overactive bladder
- EDS Ehlers-Danlos Syndrom - rare tissuedesease
- Cronic longterm nonmaligne painsyndrom
- Posttraumatic Stressdisorder
- Septal Perforation
- Damagedes,ulcers and irritations of the stomach
and intestines mucous membranes and tissue.
- Plus the uniq symptomes and chainreaction these above do interacting
- Others under suspecion but not posssible to exam.
Still in the chamber twice a day - fantasic effect !
Also still connected to oxygen in highdose many hours per day.
When I started HBO hometreatment the most
dangerous situation/symptoms was;
Heavy spinalcramps combinbed with
bleedings in tissue and organs.
(Had almost constant black spots/internal
bleedings due to the fragile tissue)
Patients with EDS has serius problems
with bloodcoagulation, make scars
that are strong !
Bleedings just have to be avoided !!!
I had bleedings in the urinbladdder for
long periods the bladdercramps was
provocated by the spinaldmage
- it was unbearable and
completely impossible to ease in any way !
The joint, general; In general much
Hands, fingers, wrists;
HUGH difference ! I am able to use/work a little every day - a totally
Still in need for heavily fixating with braces every time I do anything as they
are still fragile and breaks easy out of
joint and that is diffficult and painfull to set back again !
But a very unexpected and wonderfull
Sleeps now about 5 hours, good, deep
sleep often with oxygen in mask.
Due to the extreme painlevel, from
backsurgery in 1991 to oxygentreatment
2 years ago, I stopped breathing in sleep.
This is confirmed by sleep analyses !
Here I mean the mecanism between
activity, getting tired, resting and feeling fresh again !
Natural mecanism I have forgot about !
Now I am able to easy activity
- feeling normally tired, resting and able
to activity again !
The HBO treatment has given me 12
hours a day in general - before I was
just in bed- 4 years without any activity
beside fighting for my life, trying to avoid these awfull spinalcramps got worse !
THAT alone is an amazing gift !
General energylevel is much higher and
Concentration, surplus, cognitiv much, much better !
Lower back has changed dramatically !
You can SEE it with the eye when you look at the back !
The back is no longer wristed into a
harmfull,very unnatural and extremely
painfull position !
Cronic sciatic pain -lowered
Generally lowered but it is offcourse
provocated by activity
The splitup I feel in my body below the
operationpoint; one side of the body
buried in redglowing lava and the other
in a deepfreezer, still there - but
much lowered !
Right leg, still paralysed, but with a much
better coordination - it is easier to work out and train it
Balance - MUCH better !
Pain generally -changed completely !
Se link to a blog about the level !
Back then; a clear 15 most of the time;
now ...8 ...at the max !!!
In general offcurse ...but an amazing
I still need to use mental resurces on
pain-management but not what I am used to Also still the first thing I do each
morning but the day is so much easier !
This, and the fact I am am able to recover
/restitute makes my level of activity much higher and easier.
I have for many years becomed used to what is called sensory
perception is completely affected by the severe pain
level - meaning the way we experince our
surroundings, balance, feeling sick,
vommiting, sense of hearing,sensse of touch, sense of vision was deeply affected
I constanty saw the red fog of blood in
front of my eyes - and tasted the metal in my mouth !
Frontyard to Hell !!
The stresslevel has offcourse also
changed dramatically !
Almost no wounds anymore
Patients with EDS has constantly small wounds all over !
The gums no wounds at all !
Looks fresh and healty
All the damages are gone !
Lungs, asthma, broncitis - changes due to EDS and many penumonias.
- I still use preventive medicine but no
attachmedicn for asthma at all !
And havent done it for 2 years now - in
spite of awfull fog here in Denmark !
Left lung - tissuechanges, scartissue
Still painfull outside, especially in cold
I still need to use a mask that warms up
the air that I breathe !
But no dolphinesound anymore (a very rare
symptom from EDS)
I also had the “unstoppable breath”
- my breathing is the best it has been
For many years I had several pneumonias and other air-wayinfections
( 8 yearly was not unusual !!)
In 2013 I had 2 !
Nose -still the big hole/wound in cartilage due
Still reaction to hot, cold weather, dust,
dry air, and especially the temperature
the air I breathe, cause it makes it difficult to warm up the
air I get in my lungs !
Infections start so extreme fast in this
nose and almost imiditaley gets down in
the lung...and the pneumonia is a reality !
Fluid Retention after treatment with
Cortisol - still alot in the tissue
Post traumatic stres
Very different !!! Almost no symptoms!
It will be way to long to go into all the
changes here - there are so many !!
Please feel free to look at the blog and the other updates
Gastric mucosal ulcers
One of the few worsening problems
Still vommitng 10 - 12 times a day !
Due to the fluid retention I dont look like
a person that cant tollerate food
- but actually I can only
tollerate very, very few things without
very aggresice reactions.
I now have symptoms that the hole
stomach has these bleeding ulcers !
As an EDSpatient I cant have anything done to it - what there is to do has been
Bladder many diagnosis with many symptoms !
But the cramps has lowered a lot as the
spinalcramps got lower !
But as in the stommach - when you loose
the inner, proceting layers of the organs, your reactions gets vey strong as anything gets pure chemestry !
That is very painfull, exhausting and
Mucosal irritation and ulcers in the deep tisssues is one of EDS “specialties”
Urine is still like boiling acid in open ulcer!
Still up to 40 urges per day -(an urge is the feeling that you need to
empty your bladder right here and right
now cause it is completely filled. )
But with spinal and nervedamages and the painfull bladder syndrom it dosnt matter
if the bladder is full or completely empty - the nervedamage is broken and the body reacts extremely strongly to the signal !
Goosebumps, freezing feeling in the hole
body, shakings, and unfortunately - bleedings !
Not so heavy as when the spinaldamage made it worse
The EDStissuedesease makes the tissue
fragile and breaks easily - and it bleeds !
So with the higher activity level I am able to now makes it very difficult sometimes
to avoid !
And my spinaldamage is very sensitive to
driving in cars, as the shaking is enough to start the reactions again...........
Infections; I still react with fever when I am with larger group of people.
Had pneumonia both january and february this year !
In many,many symptoms is there such a
hugh change it can be difficult to see
that it is the same person, the same
And that this change has to do with only
one kind of treatment !
With no sideeffects !
But the problems left develop negatively
and not reacting as when I was treated in hospital for 25 days !
Then ALL symptoms reacted postively !
Also the bladder, the general immunsystem was better and I was able to “do things” - meaning it was better even at challenge.
It is a "pressure-thing"
In this pressure most rheumatological /
neurological symptoms reacts positively-
(referring to dr Petra Kliempt, Dr Proff
Philip James and other documentations
- I dont want this to be a medical discussion but this is what I am advised and have
read in dokumention)
My body DO love to be inside my chamber and that is certainly and absolutely the
place I feel most comfortable !
But as time goes and changes comes and
goes. I am so much better in so many ways but are still housebound most of the time ! And still has very strong, serious reactions at certain challenges.
It has taken my a little while to accept
and realize ..the need for a higher pressure.
Noone did ever expect I got so far as to where I am today !
But in order to move on and be able to do what I actually am able to do now, I need to have the last symptoms covered too.
Both spinaldamage and hereditary disease are neurologiske og rheumatologiske but a part of THEIR DOINGS are ulcers
- fresh and cronic !
And ulcers are treated in higher pressure
when you talk HBOprotocols and documentation ! My ulcers comes, due to damages of
ilnesses that dont disapear
- they dont get healed in
HBO - but their symptoms gets
lowered to a minimal if you have acces to HBO regurlarly !
- therefore we belive that the last
symptoms also will react positive at
longterm use in higher pressure like at the hospital !
There is absolutely no doubt - having my
chamber and using it saved my life 2 years
I am feeling much better and I have
choosen to be positive and take this as a
step in “the road to recovery”
The last 6 years has been directly and
exclusevly about survival
- the first 4 indescribable
- the last 2 - an unbeliveable journey back to life - where each day had unexpected gift
I am still so extremely gratefull and
appreciate the help I received - every
day I think about it and do so enjoy thethings I slowly has been able to do
HOPE is the worse you can take away from
someone - when I had the chamber home
I rememeber the desperation, the need
for that hope ! It prooved itself !
Sometimes still have a day where I have
the full package of symptoms - last time
not long ago !
...I had the full crampchainreaction and it
took several days to recover from.
And I am so chokked of how I
managed to be there
ALL THE TIME without a seconds break !
I dont know !
It only proves that you cling to life and
carry the hope in your heart !
It is so difficult to explain the
difference as these updates are only
..lists of symptomes ...
..it is so difficult to describe the
I hope you can SEE it !!!
And also my gratitude and happines !
But some things needs a new solution-
we are working on it !
A big and heartfelt
thank you to all who have helped and
supported this fight
- you are with me each and every day
as this difference is a proof of your
help and makes it visable each day !
Denmark, march 22, 2014