New Site for *Atypical TB–My Story*

                                       

                                         

New Site 

for *Atypical TB–My Story*

 Revised, Improved, Updated Entries

                       *Atypical TB–MyStory*                      

http://atypicaltbmystory.wordpress.com/

NO DEFEAT IN FIGHTING...

About me

                                   

                                   

(Dec 24/2011)

So many memories are flooding back i dont know where to start from...

Perhaps a simple introduction would be best before i get into the history of events:


Hi, i am Sonata (my Blog name)

I live in the South East Queensland in Australia.

For near ten years my husband and i and our two kids lived in a large
old typical high set house with our dogs and cats, one canary bird
and a back yard with a never used barbeque and a set of swings and all.
A small ordinary, rather quiet and happy family.

Then i was diagnosed with a serious Lung illness.
I was given 2 to 5 years maximum and was put on long term antibiotics.

Soon we sold our home, gave our pets for adoption and moved into a new
waterfront apartment so that i could live my dream and enjoy the sea
while i started 3k daily swimming laps at the local pool.
Later on we moved again to a differnet newly built unit
and for the past near nine years i have lived in this type of clean, pet free
environment with a 100% Natural, Fresh Fruit/ Vegetable diet, Goat milk,
Nuts and Seeds, supplemented with daily Vitamins.

After a couple of years, my specialists informed me that the antibiotics
were not working and that generally they were not doing me much good.
I was faced with the dilemma to stop and let nature take its course
or keep on taking them to slow the process (as i assumed) and see how things go.

The decision came soon after a walk with my younger daughter
who was then a High School student and while not even having
a boyfriend at the time, she told me:

"Mum, i want you to be at my wedding!
I cannot bear the thought that you might not be there..."

While i was considering silently in my head
that she would be studying medicine and would have to do internship,
find a boyfriend and if all well, wait for him to pop the important question
and then arrange a time ... etc... etc...

I was surprised to hear 'her mother' part of my brain replying:

"Of course sweetheart!.. i promise you, from this moment on
i will do all in my power to live and be at your wedding
and i will be there no matter in what condition i am."
and then the trailing part of my thought completed itself silently in my head:

"...and if i am not here - as is most likely- ... i will still be at your wedding..."

So i continued on with the antibiotics.

Beyond all odds i survived and made it to her wedding
but one month later my condition deteriorated so much
that i almost past away one evening.

When morning arrived and found i was still here i decided it was now time
to stop the antibiotics as i had fulfilled my promise
and was time to give my body a chance to recover
or for events to follow their natural course...

Miraculously i started to recover - and recover Fast and Vigorously!
All Bleeding Stopped and i felt Better and Stronger
than i had ever felt for a long long time
and was able to fortify my diet with additional Nutritional Foods
that while on antibiotics my body somehow could not tolerate.

All was good and getting better and better until six months later
when suddenly i felt like i had somehow caught head lice...

(The story about the supposed 'head lice' continues in my other Blog:
http://malasseziayeast-mypersonal-battle.blogspot.com/

The Lung story will unfold from here on in this blog as time goes by
unless ...i depart suddenly - a possibility that always sits in the forefront of my mind as i have been living one day at a time...

Sonata

Next Entry: Diagnosis: Atypical TB- Mac Avium Complex (MAC)

Diagnosis: Atypical TB - Mac Avium Complex (MAC)

(Dec 26/2011)

                                                                                                      
                        (Visually closest to my own X-Ray)


It was a hacking raspy cough that attracted my GP's attention during a visit
and ordered an immediate Chest X-Ray.

I had deliberately -and very unwisely- tried to stifle and hide that cough
for near two years during my HRT prescription visits
not thinking it was anything too serious and wanted to avoid
a round of around the mill tests that would end up showing nothing
as it had always been the case with any tests i had ever done
but this time i was caught and it was just one unguarded little cough
that elicited a surprised exclamation of "WOW! .... what was THAT! ..."

..........  . /.  .......... 

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    i

Antibiotics -Tests - and Side Effects

(Dec 30 2011)

               
                                                 

Initially when first diagnosed in 2001 i was prescribed Four different Antibiotics
dosage based on my then steady weight of between 51-53 kg, taken Twice daily
and a Monthly routine of Tests.

..........  . /.  .......... 

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Living with TB - meant- Radical Changes

(31 Dec 2011)

The Two Legs that kept me making the distance!

After the initial difficulties- denial-resistance-et al
i started frantic research trying to find out as much as possible
in order to get to know how best to deal with it.

The findings in regards to cure were mighty disappointing:

-Not much know by medical /lung specialists
-Research still done - and more needed
-Not many available effective medications etc.

..........  . /.  .......... 

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    i

Atypical TB : Medication and Side Effects

(July 2012)

                             

It has now been Three Full Years since i came Completely Off Antibiotics.

Some of the side effects vanished soon after the termination.

Some are still present and persistent as a result of the long term use

and Some have become irreversible.

During the first Six months the Side Effects were very Severe on all levels

from the pure Physical, to the Mental and Emotional as there was no area

that normal body functions had not been affected and thrown out of balance.

After that came a rather abrupt body adjustment

and it all felt kind of Normal ... within its new established ... Abnormality!

Side Effects during first 6 months and onwards while on Antibiotics

..........  . /.  .......... 

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Atypical TB : Life Style Changes

(July 2012)


          

After the Test Results and the Official Diagnosis of A–TB (MAC)

and information and questions  that could be answered by the Specialist

it was time for my own frantic in-depth research

for as many as possible areas  related to the illness.

Medical Research

..........  . /.  .......... 

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ATYPICAL TB (MAC) - and DIET

(July 12)

                                        Diet

*Nutrition -for me -Is the Equivalent Of One’s  Financial Capacity

  TO Build either A POOR HUT or ... A LUXURY MANSION!

..........  . /.  .......... 

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Atypical TB: and SUPPLEMENTS

(July 12)

                  Supplements

                       

There are many people who believe that their Diet provides them 
with all the elements they need.

I am Not one of them! – even though my Diet is 95% Raw and Unprocessed

i know if i just relied on it to provide my body with all it needs it would be fantasy.

I have tried both ways, several times, with and without supplements

and have always confirmed a marked difference very convincing to me.

Adding the Fact of a Serious Illnes such as A-TB (MAC)
and the heightened need for Extra - for me, leaves no space for argument.

There have been many different combinations of Supplements i have used

throughout the time, both Before as well as During the TB illness

and there have been many modifications i had to make in the recent years

according to specific needs and /or intolerances at a time.

The Current Regular Daily vitamins and dosages i am on, are :

..........  . /.  .......... 

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Atypical TB (MAC) : INFLATING THE LUNG

(Aug 12)

                          Inflating the Lung

                             
                           

The Initial X-Ray indicated  two Collapsed lungs

widespread, extensive Bronchiectasis

and a heavily A-TB (MAC) occupied area

the latter diagnosed after the Sputum Test.

..........  . /.  .......... 

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Atypical TB: and HYDRATING the LUNG

(Aug 12)

                          Inflating the Lung

                             
                           

The Initial X-Ray indicated  two Collapsed lungs

widespread, extensive Bronchiectasis

and a heavily A-TB (MAC) occupied area

the latter diagnosed after the Sputum Test.

..........  . /.  .......... 

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    i

Atypical TB (MAC) : and RELAXING the LUNG

(Aug 12)

                Relaxing the Lung

                             

A Relaxed Lung is essential for Better, more efficient Breathing,

less Coughing and Aggravation and allowing Mucous to Loosen up

among many other things.

..........  . /.  .......... 

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ATYPICAL TB: AND EXPECTORATING / Clearing the Lung

(Aug 12)  

       Expectorating / Clearing the Lung
                           
                                          

Expectorating/Clearing the Lung at Least Once a Day

is one of the most Important routines for Insuring:

* Better Lung Care and Health

* Easier Breathing

* Less chance of secondary Respiratory Infections

* Easier Talking without Chocking

* Quiet uninterrupted Eating

* Laughing without coughing and chocking

* Lighter chest during Sleep

* Less ‘mucousy’ odour from within

* Less going accidentally down the stomach

* Better, easier Exercise 

* A generally Lighter feeling

..........  . /.  .......... 

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ATYPICAL TB (MAC) : And MINIMISING BLEEDING

(Aug 12)             

                    Minimising Bleeding 

                                              

Late in the process when it was clear that the antibiotics were not working

my Specialists presented me with some available options if i elected.

..........  . /.  .......... 

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Atypical TB: 8 Year Revision of Medication Side Effects

                       

                   Copied Directly from my Diary Files

              Recorded prior to Terminating Medications

..........  . /.  .......... 

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Atypical TB : DETOXIFYING LIVER and KIDNEYS

(Aug 12)

                           Detoxifying Liver And Kidneys 

                                   

The Liver and pair of Kidneys are the two main Organs

that shoulder the greater impact of Antibiotic Toxicity.

..........  . /.  .......... 

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HEALING ENERGY

26 February 2011

                                         Healing Energy

                                           

* A short Healing meditation i created and have been practicing

  as part of my contribution in helping alleviate all kinds of suffering in the world

  whether it be Physical, Emotional or Mental, such as Illness, Grief, Sorrow etc.

..........  . /.  .......... 

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ONE STEP AT A TIME...

(Aug 12)              

                  One Step at a Time...                                                          

                   

Every Day that goes by

I feel as if i have climbed one or two steps

towards the end of my Final Destination...

One that I often like to fantasise

that there is a Benevolent Presence

somewhere along the way of that celestial Ladder

waiting for me - and when we meet i will be told:

‘You have suffered tremendously

and have fought long and hard

so now is the time for a break

and be granted your One wish

to Enter a warm Golden Cloud

and feel wrapped and rested by Eternity...”

Well... i know it is not going to happen

but it does not hurt to imagine it

as anything regarding the other side is unknown 
and created by people’s unique imaginations

and comforting wishful thinking -much like mine

while in the physical plane there is a sense

of a strong ‘denseness of the down...here’

and very little comfort to come with it...

                        

 In the meantime, while i am still in the arena of the ‘Down here’

there is a story that influenced my attitude throughout my double fight

of A-TB and even worse of the Malassezia Yeast.

I don’t know how long it can keep me going, as at times the daily battle

with the second beast, plunges me emotionally under water

and i see my constant fight as futile and without any purpose

-this only temporarily, as surprisingly from the depths of despair

 arises something that lifts me up, and throws me back in the arena...

 * A Will Greater... *

Anyway, here is the Story:

My first vibrant and youthful Mother in Law, many years back 
was diagnosed with malignant Breast Cancer and lost one breast.

Even though i was not as informed or involved with Nutrition as i am now

-been young, pretty and healthy and when all bad things were happening

to other people- i still said from some wise part of myself:

“I guess now you will have to change Your Diet!”

She replied:

“ Oh!..Nah!.. No way!... I cannot live without my Stake! ”

I was stunned and confounded and did not know what to say.

Less that 2 years later she passed away due to advancing Cancer.

I felt really sorry because i liked her but the message for me was:

She could have LIVED without her Stake... but not with it...

My second Mother in Law also diagnosed with Breast Cancer

and a great ‘Fighter’s Inspiration’ for me, did exactly so:

She changed over a New leaf to the best of her knowledge,

incorporated a lot of fresh raw items in her diet and some supplements.

How good or bad i am not aware, but there was a point

in one of our gatherings that i thought ‘she is eating much like me now!

She is still alive today and in a very advanced age 
despite a heart condition on the side.

For My Self:

------------------------------------------------------------------

          I have No doubt in my mind that

            “Having Chosen Nutrition

               i have Chosen Life

       Had i Chosen Taste or Habit

       i would have Hasten Death”

------------------------------------------------------------------

It has been exactly three years almost to the day, Aug 09 to Aug 12

that i have been completely Off the Antibiotics 
and i do not know whether they helped in the end
or simply landed me in the Malassezia Yeast Hell.

I will never know, it is mainly what i believe based on events and results.

For now

* I Climb up 101 Steps Daily

* Walk 3K

* I am Not on Any medication whatsoever for A-Tb or Anything else

* I need No Oxygen machine (...yet)

This is not too bad for a person with the size of a matchstick box
of remaining of healthy(?) lung and supposed to have Died 10 years Back

not to mention fighting Malassezia Yeast on top
which is highly antagonistic to anything good i try to do for my lungs...

Due to Not being able to swim any more
my condition is definitely deteriorating Fast...
I can Feel it but i keep going...

   

I have No regrets and could not have done anything better, except for one thing:

“Get Off the Antibiotics as soon as possible and give my Body a chance!”

instead of over-bombarding it Day and Night Non-Stop, for so Long...

Now that i have been through this hard journey and have learned so much

-the hard way as is usually the case- i am wondering in retrospect

If i were able to Rewind Time, Events and Decisions

what would i choose to advise myself if starting with a clean slate?

* Give a chance to the ‘Recommended Length’ of Antibiotic Treatment;

  If it Works, get out as soon as possible –unless otherwise advised

  and there is good reasoning behind the recommendation-

  and then Get On with Earnestly Building my Immune System.

* If it does Not Work... no reason flogging a Dead Horse and poisoning

  my entire body with consequences waiting to pile up at the end

  if  lucky / unlucky to reach the other end and ...

  Get On with Earnestly Building my Immune System

  and NEVER Stop until my Body Is No More ...

 

For Now and while still here

My Motto and Rules are - and always have Been:

* Be Gentle and Nurturing to the Ailing Organ or Area

* Be Kind and Protective to My Body

* Allow Time and have Patience to discover the True Cause

* Be Prepared to Correct it with All means Available if not harmful

* Listen to and Trust my Body’s Messages

* Rely on Its Inherent Willingness and Wisdom to Heal

* Be Brutal and Relentless Only to the Enemy if possible.

                                          * * *

Previous Entry: Atypical TB: 8 Year Revision of Medication sideEffects

Next Entry:  Healing Energy



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for *Atypical TB–My Story*

 Revised, Improved, Updated Entries

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                http://sonatasstory.wordpress.com/

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