Atypical TB Original Site

   (Sign above copied from my Original Site – click to enlarge)

I was Formally Diagnosed with Atypical TB July 2001
Symptoms had started 18 months earlier

* * *

Update Jan 2016 – Comments and Emails – Quick Helpful Tips            

                                 I Am Still here!

    Atypical TB - Figthing On

Mid 2009 I Stopped All Antibiotics, Tests, Doctors and Specialist Visits.
Atypical TB has been the least of my problems since then, if it is at all.
I have been primarily dealing  with the devastating consequences
incurred by Long term use of Antibiotics, as detailed in related entries

Had i known it would have been so hard i would have never done it at all.
Nevertheless, i have found ways to improve to best levels possible
and live a more tolerable life and survived well over the expected
survival term -even from after termination of treatment- and still going…

Comments and Emails

Comments Atypical TB

Although i Do Not conduct Private correspondence anymore
i am prompted by a few emails i have received recently
to Post a modified Entry that contains general points
– which i addressed in a few cases that i did sent a reply –
one of Interest to many  Visitors with similar questions and concerns,
together with a List of Hints gathered from Recent experiences
that have not been included in earlier Entries.

       General Response to Emails 

“I am not in a position to offer advice regarding the right course of action
when even the Specialists who treat many people cannot decide effectively
what is the correct and most beneficial course of action for each individual.
It has taken me a long time and have paid a mighty high price of pain
and extreme discomfort  which could have been avoided
had i known back then what i have come to learn along the way.
I would have been able to have made much wiser decisions
and would be in a much better condition than currently.

Nevertheless, i have survived it all and managing to live a better life.

In my Blog i have related many of my basic Experiences -though not all-
and if one has the patience to read through All the Entries,
they might get a good idea of what may prove helpful
in making More Suitable decisions for themselves.

Additionally i would advise visiting and reading the Malassezia Blogs
as All Three of them show how the story continued and how the Long Term
Antibiotics have brought me to a place where i often wanted to stop fighting
and give up living. Fortunately again, having left the doctors behind
i found my own way through and have arrived at a much better
more tolerable state of living.

It all comes down to choices and what is Best For Helping the Body
to Help Itself and Fight or Contain the Illness and Survive a Better living.
There is plethora of information one can find in these Blogs, many directly
connected to the Health of the Lungs –as Malassezia is one more of the ills
affecting the Lung – (Including Photos of presence in Sputum and Analysis)
and many entries dealing with Problems it presents- and solutions-
and of Improving Overall Health and Immunity.
It may take time reading through them all but it is time worth spent
presenting Valuable Information that may bring  Hope and Benefits
and may help Avoid trials and possible errors
that could prove painful for the long term.

One question that may arise after reading these entries may be:
“Would One Be Better Off Not taking any Antibiotics?”

Atypical TB Questions

This is not a question i could answer for other people.
It is a Decision for each individual to make after thorough Research
and Serious Considerations of their Personal Condition and Life style.

I believe this is where my sites provide some information
-though based on my personal condition, and experiences-
of possible repercussions as well as helpful solutions.

                     Some Quick Tips

Atypical TB Quick Tips

* Take up Long Exercise that Forces the Lungs to Inflate
* Provide ‘Live Nutrients’ to Boost the General Immune System
* Provide Adequate Hydration To Promote Mucous Elimination
* Avoid Air-Conditioned Places (Warm or Cold)
* Avoid Consuming Cold Foods/Drinks–Best at Room Temperature
* Avoid Foods that Burden the Digestive and Eliminative Processes

Details and More Tips and Suggestions are Presented throughout , in

Malassezia BlogMalassezia DailyMalassezia Health Quest.

 Suggested Related Entries:

1 Malassezia Green and the Lung Experiment
2 Acidophilus in Lung Experiment

To continue on this Site, scroll to the next Entry

=============================

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Atypical TB -Update 2016- Rebuilding and Fighting On

                       

                          Welcome!… Thanks for Visiting

~Atypical TB MAC ~

Rebuilding and Fighting On!

*

Atypical FRAME

                                                                               *    *    *

                                              WHAT THIS SITE IS ABOUT:

                                      * LIVING WITH ATYPICAL TB – MAC

                                      * A SUCCESSFUL 13 YEAR BATTLE!!

                                      *ANTIBIOTICS – AND EFFECTS DURING AND AFTER

                                      * LUNG HEALTH CARE 

                                      * DIET

                                      * EXERCISE

                                      * SUPPLEMENTS

                                      * TIPS FOR MINIMISING SIDE EFFECTS

                                      * LOOKING AFTER THE LUNG 

                                      * IMPROVING IMMUNITY OVERALL

                                      * REBUILDING AND FIGHTING ON

    

* * *

* Update Jan 2016 *

I Am Still here!

Mid 2009 I Stopped All Antibiotics, Tests, Doctors and Specialist Visits.
Atypical TB has been the least of my problems since then, if it is at all.
I have been primarily dealing  with the devastating consequences
incurred by Long term use of Antibiotics, as detailed in related entries
Had i known it would have been so hard i would have never done it at all.
Nevertheless, i have found ways to improve to best levels possible
and live a more tolerable life and survived well over the expected
survival term -even from after termination of treatment- and still going…

The Story of what followed and what i have been through since then
has been Unfolding in Order of Events in my Three Blogs

Malassezia BlogMalassezia DailyMalassezia Health Quest.

See also:

Malassezia in Lung Sputum TB

1 Malassezia Green and the Lung Experiment

Acidophilus for Lung TB

2 Acidophilus in Lung Experiment

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WHAT THIS SITE IS ABOUT

ATYPICAL TB – MY STORY

 

*
Welcome!… Thanks for Visiting

~Atypical TB  MAC~

Rebuilding and Fighting On!

*

Fighting On                                         

                                                   My Story

(Dec 24/2011)

Hi, i am Sonata

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 barbecue 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 different 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’ will be detailed in a near future linked Blog)

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 (my Blog name)

                                     ***

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DIAGNOSIS : ATYPICAL TB MAC AVIUM & Life Style Changes

                                 

                                  Diagnosis:

             Atypical TB – Mac Avium (MAC)

                                          *                                                             

                                               (Dec 26/2011)

                                  Diagnosis Atypical TB

                                              

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! …”

The Chest X-Ray displayed an old granuloma and Extensive Bronchiectasis…

This was followed with an Urgent appointment at the Outpatients Specialist Clinic

at the Local Hospital where more X-Rays and Sputum sample tests were done.

When the Sputum sample returned indicating active TB Mycobacteria,

i was ordered to pack up and present at the Local Hospital ASAP

where i was placed in the Isolation Ward for 5 days until the Mycobacteria

was identified as Non-contagious and was free to return home

but not before i was given “The Good news … and the Bad news”

together with a bagful of a Lethal Cocktail of Antibiotics.

“The Good news, i was told, was that it is Not Contagious.

The Bad news was, it is Harder to treat and takes Longer… if it works!”

None of this meant much in my fogged up antibiotic loaded head at the time.

All i wanted, was to get out of there and Breath Fresh Air again and Go Home!…

I was referred back in to the care of the Outpatients Specialist Clinic

where the then Lung Specialist gave me more details

after many confusing, puzzling questions:

Atypical TB -Mac Avium Complex – MAC

Harder to treat – More Resistant

Long Term Antibiotic Treatment ( 12 – 18 month)

Two to Five year Life expectancy (if treatment did not work )

*AIDS Test – returned Negative.

——————————————————————————————-

         Atypical TB -Mac Avium Complex – MAC

MAC AVIUM Complex

                                                      * * *

“Nontuberculous mycobacteria are not transmitted from person-to-person; they are ubiquitous in the environment and are typically transmitted through aerosolized water droplets. There are a number of species, but the most common infectious agent is mycobacterium avium complex (MAC), which is a combination of mycobacterium avium and mycobacterium intercellularae. The two species present the same clinical manifestation and can only be differentiated by DNA analysis.”

For more info

Source:

http://brighamrad.harvard.edu/Cases/bwh/hcache/332/full.html

Photo links:

http://www.google.com.au/images?hl=en&gbv=2&tbm=isch&sa=3&q=atypical+Tb+mac+avium+x-ray+photos&btnG=Search+images

http://www.uaz.edu.mx/histo/pathology/ed/ch_9b/c9b_mtb_mac.htm

http://www.google.com.au/search?q=mac+avium&hl=en&gbv=2&tbm=isch&ei=Lav7TpS-CsGeiAfd1t3tDA&start=63&sa=N

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TB meant Action and Radical Changes

 

 Living with TB  called for Radical Changes

                                   (31 Dec 2011)

          Living with TB -changes

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 known by medical /Lung specialists
  • Research still done – and More needed
  • Not many available effective medications etc.

On a personal level, it took me some time before the grim reality

actually sunk in -and accepted- that this was not a simple ailment

that i could apply my health tricks and make it go away…

Once the message had come clearly into focus, i sprang into action.

Generally speaking, being a Vegetarian and Health Food minded

my diet was considerably Healthy and Nutritious

but for a killer illness like this, it did not seem to be adequate,

More needed to be done and not just in that area alone…

           So, the first step was to start Swimming.

               Swimming for TB          

Fortunately the local -heated-pool was just a block away.

I used to be spending quite some time there watching my younger daughter

been coached when learning how to swim then advancing to squad training.

I had learned a lot … visually… but getting in the water and applying it all

was quite a different story, adding the surprise of a lung ‘chock-a-blocked’

with mucous and felt like suffocating.

It was very difficult and embarrassing at first,

especially being watched by regular swimmers as well as coaches !…

I persisted nevertheless and the first three laboured, near drowning strokes

with tremendous, burning effort, discipline and determination,

over time advanced to near 3 K daily swim, learning and practising All strokes,

Butterfly last, when i felt all other challenges became easy.

I was fortunate to receive not only unprecedented support from all regular swimmers

but frequent instructions, from sympathising to my story and effort, Coaches as well.

I must mention here that swimming alongside with Olympic Medal swimmers

had a very helpful and inspiring effect  that minimised any difficulties or discomfort

or resistance met along the way.

Swimming was the Number One Beneficial, Life Supporting Element 

that Contributed in my Still Being Here among the Living

and without oxygen machines/ support to this date (April 13)

 

                        The Second Life Supporting Element was

                             even for my already healthy standards,

                           Many Dramatic Changes in my Diet.

Healthy Lung Diet                     

                             Swimming And Diet :

      The Two Legs that Kept me Making the Distance!

(Details about Diet and Other Changes will be detailed in subsequent entries)

                                                     *

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Atypical TB and Implemented Changes

(July 2012)

Atypical TB and Implemented Changes 

       

                            Swimming for Lung

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

and all 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
 

I researched about

* The Antibiotics and the array of their Side effects

* Percentage of Success or Failure and Survival

* The Illness A-TB (MAC) and how much was known

* Research areas done at the current time

* Treatments and Options (available then)

* Lung Transplant facts and options

General Related Health Information
 

* Possible causes of Irritation to the Lung

* Possible Beneficial Tips 

* Physiotherapy, Breathing Exercises etc

* Helpful Diet and Supplements

* Ways to Boost Immune System

 

Self Help /Observations

 

* Diary of what made me feel good or bad from past repeated occurrences

   and current ongoing observations

* Alertness and watchfulness of any significant signs or changes

* Areas needing changes and adjustments to the current condition

   that could inhibit Improvement

 

As I mentioned previously in the *Living with TB-meant-Radical Changes* Entry

Taking up Swimming was the very first change introduced, as soon as i knew

there was a serious problem and before the exact type of illness was discovered.
This gave me a head start during the ‘waiting to see a specialist’ time

into Inflating the Collapsed Lungs and getting them  to Breathe again

under the difficult environment of the water discipline

and by the time MAC was diagnosed, it was a matter of perseverance and daily practice.

 

Immediately after MAC Diagnosis and the Commencement of Antibiotics

serious changes of Diet was the next step and a constantly and throughout evolving

plan to suit and produce the best and most beneficial results.

 

Other Major or Minor Changes Implemented

(also evolving and adjusted with time) were:

 

Avoiding Totally or as Often as Possible

 

* Smoking areas 

                           Lung TB No Smoking

   (and sending outside the occasional smoking visitor)

 

* Enclosed Places where Cold, Germs or Flu Viruses may be present

   such as Cinemas, Restaurants, Libraries, Enclosed Shopping Centres

   Doctors Surgeries, Pharmacies etc

   Doing as much shopping On-line as possible.

* Avoiding Contact with People if Sick with Cold or Flu

   until they are well recovered

                      Lung TB Fevers

* Air-Conditioned Places (Much as above)

                    Cold and Lung TB

* Minimizing Handling and Close Contact with Pets

                   Not a favourite restriction

     but eventually it developed into a necessary one

                     Lung TB and Pets

      They can be enjoyed in proximity

  

* Household Sprays and Aerosols of All types,

  Deodorants and any other Chemical Irritants

                     Chemicals and Lung TB

* Allergenic or Inflammatory Foods

  

* Eating or Drinking Cold Foods or Beverages

   even if this is the traditional way people consume them.

   MAC in the Lung cannot cater for traditional ways,

   which are normally based on maximising taste rather than digestion

   and are generally not the best ways as far as health in general is considered.

                          Lungs and Soothing Drinks

* Eating or Drinking Too Hot Foods or Liquids

   Burning and aggravating the internal linings with  Too Hot Soup

   Coffee or Teas, is no doing a favour to an embattled area.

  

Establishing Beneficial Routines and Habits
 

    such as

  * Going to Bed Early and Allowing Plenty of Rest

     as these are the times when the body Recuperates.

                     Sleep and Rest for Lungs

* Adjusting Sleep Position

   to Facilitate Easier and Deeper Breathing

             Sleep Positions for Lungs

* Allowing as much Fresh Air as Possible in the House

   and Especially so in the Bedroom during Sleep time.

   Opened   doors and windows all day to air well and closed at night

   but leaving some small opening either in window or door

   for continuing replenishment of fresh air

             Air and TB

 * Developing a Sense of Alertness to the Body’s

   and Especially the Lung’s Needs and Responses

   – and be prepared to Adjust.

 

   If something feels good and soothing, it probably Is

   If something makes the Lung choke and cough or bleed it definitely is Not

   even if in some instances the purpose is meant to be beneficial.

  

  For example, drinking something Cold that Irritates the Lung

  and causes a coughing fit is not the same as the Lung coughing

  when trying to get rid of accumulated mucous, dust or allergenic irritant.

  Its signal and action appears the same but the cause in the first case

  is provoked unnaturally and is not beneficial, while in the second

   the Lung is doing its job in a more regulated manner.   

 

 Incidentally, although there is nothing gentle about clearing mucous,

 there are much better and more gentle ways of achieving it 

 than irritating and punishing the Lung – with which i will deal

 in upcoming entries.

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TB Tests, Antibiotics and Side Effects

                         

                   Tests-Antibiotics and Side Effects                                                    

                                                (Dec 30 2011)

                          TB Antibiotic side effects

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.

   Antibiotics :

* Pyrazinamide

* Rifampicin

* Ethambutol

* Clarithromycin
 

  Monthly Tests:

* Blood tests

* Sputum tests

* X-ray Tests 

I also had One Breathing test and One CT Scan -and never another!

That was my choice… i was a very difficult patient back then

and the relationship with the first Lung Specialist was rather strained and grinding…

Partly due to the patronising way i felt he treated me

and partly due to my difficult character when it comes to following orders

especially trusting decisions about my body in the hands of another.

Initially i fought fiercely, Wild Stallion style, perhaps because something in me

refused to believe that i was so sick and partly because his fixed tack

of constantly defending all ugly, uncomfortable symptoms i was experiencing,

as due to supplements i had been taking for well near two decades,

instead of accepting they were the usual side effects caused by the antibiotics.

I had never been a pill popper person, hardly used antibiotics more than 4-5 times

in my entire life till then and painkillers or anything coming from the chemist

was avoided like the plague.

The sudden overload of them, in number, frequency and quantity

so overwhelmed my body that i found impossible to operate

– was heavily fogged up and felt so ill that i wanted to die.

One of the most torturing problems was a burning sensation

in different parts of my body as if burned by trillions of hot pins

and the appearance of lesions in my private areas.

When i mentioned these symptoms and complained

(back then suspecting they were caused by the Pyrazinamide,

because Pyra comes from the greek ‘pyra’ meaning fire)

i was bluntly told i was …”highly strung!” …

I was insulted and frustrated on top of desperate

but i knew there was nowhere to go with this fellow

so i turned into investigating other possibilities

such as Candida yeast -suggested- but not checked- by my GP-

and told to use Clortimazole without any effect whatsoever.

Eventually, as the idea had started to dawn that it was either

antibiotics and their ills or dying, made me reluctantly surrender ,

i stopped complaining and accepted the lot as a general antibiotics side effects…

Unbeknownst at the time, both to him as well as to myself

was that some of the worst side effects mentioned above

were caused by an overgrowth of Malassezia Yeast Fungus
started and promoted by the heavy long term use of the antibiotics.
 

(This true cause of problems and effects

became apparent and clear just recently

the details of dealing with, in a separate blog

currently under construction:

 http://malasseziablog.wordpress.com/

At the end of 9 months of the above treatment

i felt like my body was just about to explode

and that if i did not stop, something more dire will happen

so i made the sudden decision to Stop the Antibiotics
-they had not been working up to then anyway.

My Lung Specialist was initially taken aback but he knew by then i was determined.

 He accepted and we left it at ‘see how things go’ in three monthly follow up visits.

I felt better, more enthusiastic, and the sense that something was going to explode

disappeared within a few days…

After taking some L-Phenylalanine capsules for a few days, the burning fire of hell

and its lesions also eased and cleared.

The Specialist was rather surprised to see how good i looked during the following

two visits, and he seemed genuinely pleased, which helped my feelings mellow a bit

-our strained relationship having already improved with time.

But three months later, after a total of also 9 months off the antibiotics

i suddenly started to cough up blood …

so when i went back for the next visit i asked:

“HOW LONG from here?” … meaning …till i die …

He took in an exasperated breath, followed by a rather distraught expression on his

face and with a low voice, much like approaching a dangerous unpredictable animal

                       Tigress me
                           (Tigress in Me)

                He said softly: “Let’s try again”

I surrendered …

but remembering the trouble of the trillion pins of burning fire and lesions

i declared adamantly: “I am not going back to Pyrazinamide!”

After a few phone calls he presented me with an adjusted dosage of the remaining three :

* Ethambutol * Rifampicin and * Clarithromycin.

It was not long within this routine that i discovered to my dismay three things:

1) It was not the Pyrazinamide causing the Fire and lesions

which returned with a vengeance … (so i started to suspect the Rifampicin… )

2) After every hospital visit whether for the routine tests of X-Rays, Blood, Sputum

or to see the Specialist and the test results, i would get very ill with severe,

flu similar symptoms, would frequently bleed, as well as get new,

more severe lesion outbreaks, extending to my shoulders and back as well as underarms.

3) Changes were in motion due to Local Government /Hospital reconstruction

which meant my Lung Specialist moved to a different hospital

and i was passed on into the care of the TB Control Clinic – held at our local hospital.

The change was good, the TB Control Specialists were great and very cooperative

and after having explained that i was not interested in living long and running around

perpetually chasing tests of all kinds, if they were not contributing to cure as such,

and that all i wanted was living ‘quality’ of life while possible, for and with my family,

and due to reason number 2 above, the routine visits were accordingly set initially

to three monthly, as blood tests indicated, that with my successfully detoxifying diet

i was nowhere near any danger of dying from liver toxicity.

So, having accepted the fire and the lesions as antibiotic side effects

all run smoothly from there on for some years to follow.        

 

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