~ Atypical TB * My Story ~: Antibiotics -Tests

(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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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 fiercly, 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:

http://malasseziayeast-mypersonal-battle.blogspot.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

(The Tigress in Me)

he said softly: "Let's try again"

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

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( See Also: Atypical TB -Medication and Side Effects )

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