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Re: tobra/tobi s/e

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Hi Eileen, Joan,

....fraid seems so, my GP even went so far as to say last time I saw him “well, it’s uncontrolled infections....or side-effects, I know it’s a hard choice, but that’s what it is”. Devil & deep blue seas, rocks & hard places spring to mind.....

I use the uZap belt daily, which keeps the volume of sputum from building up seems is the only way I can keep infx level under control. Even after abx I have infx again within less than 2 wks, so doesn’t seem much point.... Maybe if the massage belt can stretch the gaps between abx, instead of 4-5 x yearly...then maybe my hair won’t keep falling out in clumps, rashes and sores aren’t so bad, and the other vestibular / hearing losses hopefully reduced...???

The fact that the hearing/vestiblar s-e can start months after makes it hard to ‘prove’ any particular cause, and doesn’t help in estimating degree of impact does it?

Oh, the things we have to deal with!!!

I wrote a while ago I have been selected to represent people with respiratory diseases in my State and attend my first bunch of meetings and forums on Dec 3 and 4. My mention of how many people in UK, US and other areas of Australia find similarity of problems seems to have made quite an impression. I’ve learnt so much from this site – far more than any doctors...but it shouldn’t have to be we have to find out SO much for ourselves tho.

Past my tea-time!

‘night,

joy

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