"Healing
is not necessarily restoring the original condition. It
is not returning to paradise. Healing is helping to align
the individual with the trajectory of the soul. Healing
is the field of beauty through which the details of the
larger purpose of an individual’s current life in
relationship to his/her own history, ancestors, spirits,
the present, the future, and global healing are revealed
and enacted."
Deena
Metzger -"THE
SOUL OF MEDICINE"
MY PHYSICAL STATE
Friday 13 January 2006
A
work in progress.
Many
people ask me about what is going on with me physically, as
I am so frequently ill. I don’t have a simple answer.
An
equal number of people tell me what is going on with me, so
for the record here is my account:
About
10 years ago, in my mid 30’s, I manifested the symptoms
of a ‘condition’ that has a number of names and
particular symptomology: Chronic Fatigue Immune Dysfunction
Syndrome – CFIDS, or simply CFS, Chronic Fatigue Syndrome,
or ME, myalgic encephalomyelitis, fibromyalgia, Gulf War Syndrome,
Post Viral Fatigue syndrome. Ken Wilber calls his version
of the illness Rnase Enzyme Deficiency disease (REDD). I suspect
he does this to support the movement to understanding the
condition better, rather than righting it off as simply “yuppie
flu” or a neurotic form of tiredness.
I
was tired all the time, bone tired, and had frequent bouts
of Herpes Simplex, which I contracted in my 20’s. I
had terrible ‘brain fog’, and my ability to multi
task became nil. My occasional heart palpitations became more
frequent.
I
had some tests done by my doctor, nothing thorough. I showed
elevated cholesterol and a significantly unusual diminishment
of a hormone called DHEA which normally reduces in old age.
(Some doctors do not believe there is any thing unusual about
low levels in youth). My heart was in perfect shape.
My
doctor at that time worked with a naturopath, and agreed with
the naturopath’s diagnosis – Chronic Fatigue.
The naturopath warned me about the dangers of ‘naming’
any illness, and that in fact no-one knows what CFIDS actually
is, what causes it or how to cure it. He suggested I take
a position of not entering into this "room" of an
incurable illness by thinking and living outside the box.
I took all sorts of homeopathic and naturopathic supplements,
and did whatever personal work I could find. After two years,
I had a dramatic improvement from the condition during an
exchange with Paul Lowe at a retreat in California.
The
following years I was always physically ‘sensitive’,
and had to take care to listen to my bodies needs. If I didn’t,
I’d get sick or exhausted. I often did not listen. I
had chronic insomnia, and for about a year and a half only
had 2-3 hours sleep a night. This improved, but uncertain
sleep was always with me. I considered myself well, however,
and over CFIDS, if that is what I had. My knowledge at the
time of this condition was that it lasted anything from 2
to 10 years.
Two
years ago, I started getting ‘sick’ again, with
symptoms I was not accustomed to: low grade fever, feeling
nauseous and achy. The symptoms came and went, and I had frequent
bouts of Herpes, but I was never debilitated long enough to
seek orthodox medical help. I assumed I had a return of CFIDS
like symptoms. I did, however, see a number of alternative
healers and therapists - I was very lucky to have access to
some of the most gifted body workers and alternative practitioners,
including a Mexican shaman. Almost everyone I saw I felt supported
by and I left feeling 'expanded' in a way that did not regress,
and sometimes I felt radically better physically for a period
of time.
A
year later, I became acutely ill with very high fevers. I
went to the doctor, who only after extensive tests discovered
I had an acute kidney infection (pyelonephritus, E. Coli in
the kidneys). This had probably been chronic the previous
year. I also had Mycoplasma Pneumonia – “walking
pneumonia’’, something else you can continue daily
life with without really knowing you need medical attention,
and often affects those in poor living conditions (not my
case). The blood tests also showed that I had been exposed
“at some point” to Epstein Barr, a virus sometimes
thought to be a precursor to CFS. I tested negative to Lyme
Disease and HIV.
Given
my medical history, my doctor decided not to give me antibiotics
because of the potential side effects and possibility of re-infection
with a stronger strain of bacteria. However all the alternative
medications and healing I did to focus on this illness did
not work. I finally took antibiotics, the big guns: Cipro
(ciprofloxacin). I felt great after 3 days and in two weeks
had the worst case of the infection ever. I had been told
about D-Mannose, a simple sugar that helps prevent E. Coli
from ‘sticking’, and tried it. It worked.
It
felt like a miracle.
I
was ‘better’ for several months. Last summer I
became very unwell again. I did not have the kidney infection,
but I was constantly exhausted and frequently ill with various
bacterial and viral infections. I had the brain fog again,
and was shocked at the slightest noise or unexpected outside
movement. My eyes were very light sensitive, and I was anxious
most of the time.
My
research into CFIDs suggested that there might be a three
phase part to the disease, and that it did not, in fact, go
into remission except in rare cases. The doctor I saw at the
time agreed that what I was experiencing was CFIDs, and his
method of treatment was to cure the insomnia. Lack of sleep
is definitely a factor in immune dysfunction. I preferred
not to take pharmaceutical drugs to get me to sleep unless
I was desperate, which was about twice a week, after 3 nights
of very little sleep.
I also self-treated with high level nutritional's (antioxidants
and a number of herbs and vitamins, and DHEA), and started
to eat small amounts of organic red meat. I had been vegetarian
for 15 years.
At
the end of September 2005 I had a lot of traveling ahead of
me. I did not know how I was going to cope. I decided to take
the sleeping pills every night.
I
experienced a major shift in my health. Instead of feeling
fairly awful and exhausted most of the time, I started to
feel very alive and energetic for a period of weeks, followed
by an acute illness. This has been the pattern since last
September. The acute illnesses have varied, but most of them
have acute flu-like symptoms and I am more or less bed-ridden
for a week or two. I still have some of the brain fog, and
get easily on overload. My heart seems to work on overtime,
and I have frequent ‘strange’ pains in my body.
I
am in touch with others who have a similar physical profile
to myself, and there does seem to be a pattern that is not
personal. One of the most respected doctors in this area,
Dr. Majid Ali, author of “The Canary and Chronic Fatigue”
suggests that people with this symptomology are the canaries
of the human race. Perhaps this is so. I would even suggest
that such people are acutely sensitive and feel things that
are going on in the world thousands of miles away.
So,
this is the situation as it stands.
If
you were to ask me why my body is like this, I do not have
an answer. I have some ideas, however.
I
was not a sickly child. But when I was seven my family experienced
a fairly major trauma: during a holiday in Crete, we all went
out to celebrate my brother’s 11th birthday. Afterwards,
my father drove my mother, my brother and myself, and three
other adults back to the village where we were staying. While
trying to avoid an oncoming vehicle, my father crashed into
a tree. He died. Everyone except myself and my brother and
one young man sustained severe injuries. My mother contracted
infectious hepatitis from unwashed needles at the hospital.
She was very ill for some years.
I
suspect some part of me disassociated at this point.
In
my teens I had frequent bouts of tonsillitis, treated by antibiotics,
but otherwise a fairly normal physical state. In my twenties
I contracted Herpes, followed by cystitis, which developed
into a severe kidney infection. I was traveling in India at
the time, and the doctor I saw said “I was a little
bit pregnant”. Needless to say, I did not take the pills
he gave me. I was finally treated in a hospital in Thailand,
with antibiotics. I had been having temperatures from 101
to 105 Fahrenheit. It took me a long time to recover, and
the two years following I had chronic cystitis, and one acute
bout of PID ( Pelvic Inflammatory Disease).
I
had Bulimia Nervosa for several years from my late teens to
my late twenties. During this time I was relatively healthy,
in spite of the way I was treating my body. I did get a bad
case of mumps, however, towards the end of my addiction.
In
my late twenties I married. During a holiday, I got tick bite
fever in Africa. Other than that, I was healthy. After a few
years my husband became severely ill with Ulcerative Colitis.
He nearly died, and I nursed him in and out of hospital for
nearly a year. Shortly after his recovery, I contracted chicken
pox, for the second time ( first as a child). Then my husband
ended the relationship. I was physically on empty from the
previous year, and was emotionally devastated by him leaving.
It triggered deep abandonment issues from my childhood. I
got the first symptoms of CFIDS just less than a year after
the end of this relationship.
I
suspect all of this ‘history’ has something to
do with my physical state now, not least of all the weakening
of the system by Bulimia. Chinese and Tibetan doctors diagnose
a ‘great shock’ in early childhood, emptying my
‘batteries’ to a point where it’s hard to
fill them up.
The
statistics of people getting acutely ill after taking care
of someone who is severely ill or dying are very high. Ken
Wilber got ill while on holiday with his wife, recuperating
from another round of chemotherapy for her cancer. There was
also a toxic dump of pollutants in the area, and over 200
people also got ill, so this could be another factor for him,
albeit not proven.
And
it is simply a journey through the body. I am deeply grateful
for everything that I have discovered on this journey so far.
Sometimes I complain, sometimes I feel it’s simply not
worth it, but mostly I’m in touch with a place where
everything is okay, no matter what my body is experiencing.
I
still prefer not to 'fix' what I have and call it CFID's.
I'm always open to miracles, I've experienced more than one.
And, if this journey through the body has a lesson for me,
I am the student until the teacher lets me go. (Thank you
dear Roger K. for this).
I
do a lot of healing practises from Qi Gong to body meditations
along the lines of what Eckhart Tolle suggests for the 'pain
body', to moxibustion, and I take a lot of supplements of
various kinds. Mostly, I try to remind myself to stay present
to what is, and to include everything that my body experiences
in my awareness, rather than to shut it out or ignore it.
Some
people are chronically well, as my dear partner David reminds
me. The worlds of being ill and being well are different,
but not better or worse than each other.
There
is much more to say on this topic of health and illness. At
some point I will create a page with links to things I find
relevant or interesting. My favourite is still Ken Wilber's
piece on REDD.
Perhaps
the most troubling thing I have come across is that many young
and very young children are now manifesting symptoms of CFIDS.
Friday,
30 January 2006
A
friend mentioned that he felt I had some subtle identification
with being sick & the story of it all.
I've
noticed a not so subtle identification when I am actually
sick, with being sick. And then, when I'm well, it is as if
I never was or will be sick. It feels like a totally different
'world/dimension'. I'm not interested in any of my 'sick world'
when I'm in my 'well world'
What came to me, was that, when I'm well, I probably just
shift my identification to being a 'well person'.
Tuesday,
8 August 2006
When
I was in Berlin recently had a Kinesiology session with a
Dr. Franziska Schindler. She came recommended to me by a friend's
daughter with a similar health history to mine, who discovered
she had Lyme disease.
Dr.
Schindler has trained with Dr. Klinghardt (http://www.neuraltherapy.com)-
and since I know about him and his work from another dear
friend for years now it seemed quite synchronistic.
Dr.
Schindler did one long complicated kinesiology session with
me. The way she did it was impressive and I'm sure her findings
can be checked by blood tests.
Lyme
disease tested negative (as did my blood test a couple of
years ago). But I had a very positive test to Rickettsia.
This is often a co-infection of Lyme disease, and is similar.
I would have most likely got Rickettsia in 1993 when I was
travelling in South Africa, and was out in the 'wilds'. I
got what they call tick bite fever at the time, and so did
my sister in law. The ticks carry Rickettsia. I mention this
in my history above. It was not treated ( I went to the hospital
of tropical diseases in London, and they said I would be fine
and there was nothing to do about it). My sister in law and
I both got chronically ill with various things about 1 - 2
years after this initial infection. I always thought there
was some connection, but no doctor suggested it.
I
also tested positive for something called Babesia, a malaria
like organism, and often a 'co-infection' of lyme-like syndromes.
but not so strongly.
Dr.
Schindler then tested for the things that would help me get
rid of these bacteria:
BioPure PC Noni (an extract) and the herb Andrographis. I'm
to take these at high doses for at least a year! I've just
started... so far I would say there has been a change in my
general state of health, I feel more 'resiliant'.
November
8, 2006
Shortly
after starting the protocol above, I experienced a one-month
period of relative health - the longest such period that I
can remember. After this I returned to feeling sick off and
on - the same flu type symptoms, but nothing incapacitating.
For the month of September I felt more or less continuously
ill, inspite of a relatively supportive and relaxing environment.
After this I had a two week period of intense travel, and
I suspect my adrenalin ( or something ) kicked in and I felt
okay, until I returned 'home' to France where I got very ill
for about 10 days. I am, however, now on a good stretch, perhaps
for two weeks.
I
would say that on the whole I am doing better than before
starting the protocol. I added to this the Ayurvedic herb
mix Triphala - morning and night. I had read amongst Dr. Klinghardt's
papers that this is very good for all herpes viruses, and
indeed the incidence of these has dropped dramatically.
During
the 'intense travel' period I spent sometime with another
German doctor, a client of my husbands, who was interested
in my 'case'. He took a number of blood tests, some of which
indictate that I might have a genetic predisposition to not
being able to deal with bacteria/virus etc. More details on
this when I have them. He is still doing further tests.
On
another note, I'm less 'involved' with my health, and more
involved with my writing and my workshops. This feels better
on many levels, even if the body is often very uncomfortable.
And, I continue to do moxibustion, yoga, garlic drinks and
so on.
June,
2007
I
am nearly finished my year long protocol. I would not say
I am 100% better, but most definitely the length of days sick
in bed have reduced drastically. The longest I feel ill is
perhaps two days. I will return to the Doctor who originally
tested me for Rickettsia and Babesia in July and see what
she says. I do not feel the virus has completely left my body,
and I still get minor infections, but I am definitely much
more 'resiliant' than a year ago. At the same time I am pursuing
my creative activities - writing and teaching writing, and
these are the primary focus of my life rather than my health,
which feels like a great gift. I notice that when I get 'sick',
I'm far more able to simply be with the sensations rather
than go into resignation or depression - I don't say 'no'
to my body or feel I've done something 'wrong' to have caused
the uncomfortable sensations. I accept them, rest, take care
of myself as best I can, and am very grateful for my life.
December,
2007
Well,
according to Dr. Schindler I am now free of Rickettsia and
Babesia. She tested me in September. During that time I had
a chronic kidney infection - not acute, but chronic, so it
was hard for me to feel that there was much change. I tried
to treat the infection with the method that worked before:
D-Mannose, but this time it did not work. The Doctor tested
me for what antibiotic my body would work best with - the
result was Trimethoprim. I used this, and it worked, and there
was no recurrance of the infection as previously when I used
antibiotics. Since then I have been much better - with only
the occasional 'sick' day. I do sometimes go through brief
periods of exhaustion, especially in the early evening, but
if I pace myself all is well. I am still taking pharmaceuticals
to help me sleep - and this is my next goal, to reduce these.
August
2009
I
would say overall I am much better. Fewer acute infections,
and minor infections do not last very long. I still cannot
overdo things and am affected by all sorts of things most
'healthy' people are not.
However,
the first three months of this year I seemed to dive headlong
into menopausal symptoms (everything but hot flashes), including
depression and some weight gain (remarkable for me as I have
been underweight for many years and unable to put on weight).
I used Agnus Castus, Evening Primrose oil, and topical progesterone.
(Topical progesterone should not be taken in conjunction with
Agnus Castus, as I discovered - causes 'breakthrough bleeding').
Agnus Castus seemed to work best, I took it consistently for
two months. I am now, more or less, back to 'normal' in terms
of hormones (this is an intuitive reading, I do not have access
to helpful diagnostics here in Ireland).
Earlier
this year I discovered MMS:
http://jimhumble.biz/ and http//www.miraclemineral.org
(and all over the internet, including YouTubes of Jim Humble.
I had a strong 'hit' that this is an excellent product.
I
used the MMS a couple of times with what is known as Clara's
protocol - the 6x6 protocol - and it worked very well to stop
colds etc. Given the other information and extraordinary,
albeit anectodal, information about MMS and herpes and cholesterol
and the fact that I still often feel not so great, I thought
to start a longer term MMS protocol.
I
went up to 10 drops 3 times a day for a few days and then
felt I couldn't carry on with the low grade nausea and lack
of appetite (common side effects). I stopped for about a week
and then started again, building up to 9 drops twice a day,
but felt incredibly ill (nausea) at that dosage so dropped
it back to 6 and built up again to about 8 drops twice a day.
This over about 10 days. I was doing ok, only the mildest
nausea occaisionally.
Then
I woke up feeling like I had some kind of bug -- extreme,
and I mean extreme weakness, some aches. No other symptoms,
but it felt like a bug. I did the 6x6 protocol twice, and
the next day three times, feeling perhaps 2% better each day,
and then again the 6x6 protocol three times a day for about
2 days and then upped the dose to 7 drops (i.e doing the 6x6
protocol but with 7 drops), 3 times a day. No nausea at all,
slightly loose bowels. But throughout feeling incredibly weak,
to the point that speaking was too tiring. I felt like all
I could do was lie in bed. It's the weakness you feel with
any severe illness, only I had no other symptoms, other than
a 'sense' that this was a pathogen of some kind being activated
or...?
I
thought I was getting incrementally better, but then, I got
much worse, and had to stop taking MMS entirely. I am beginning,
after two or more weeks, to feel like myself again, wiped
out but not the same kind of wiped out. I feel I can start
rebuilding my strength, which is not what I felt during the
'weakness' stage.
The
weakness and feeling-state of the body had felt like a complete
step back to some years ago. Perhaps it was a herxheimer response.
I suspect my body is still very sensitive and does not respond
'normally' to such protocols
Recently
I found this article
on MMS and Lyme -suggesting that the usual dosage instructions
are not appropriate with Lyme, and so, I imagine with Rickettsia.
I am assuming I do not have the Rickettsia any more, but as
with Lyme, even once the pathogens are eliminated, it does
not mean to say full 'health' is restored.
Right
now I feel that I cannot and should not continue taking full
dosage MMS unless under the supervision of a doctor or health
practitioner, which is unlikely here in rural Ireland. I am
experimenting with taking 8 drops three times a week, with
no untoward symptoms. I believe for 'normal' bugs, the 6x6
protocol is excellent, and will try that again if I get signs
of a cold etc.
More
importantly, I attended a writing retreat with Deena Metzger
in May of this year. It was an extraordinary time for me,
and has supported me to take a look at deeper aspects of my
life, and perhaps to begin to ask the question, what is the
'story' that my illnessess tell? And how can I live my life
in a way that it truly supports me, my environment, the people
I am connected to, and indeed, the world?
Some
useful resources:
Ken
Wilber:
www.integralworld.net/redd.html
Dr. Klinghardt:
www.neuraltherapy.com
Dr. Majid Ali:
www.majidali.com/
Dr. Majid Ali on CFS
www.majidali.com
Interesting compilation of information:
www.cfs-healing.info
The Three Phases of Chronic Fatigue Syndrome: Dr.
Paul Cheney's Theory:
at ImmuneSupport.com
Research article by m.u.:
CFIDS:
A Mysterious Enigma
MMS:
http://jimhumble.biz/
and http//www.miraclemineral.org
Deena
Metzger:
http://www.deenametzger.com/
