I hope you are all well. Please forgive me if this is in the wrong section.
I'm posting this really as a last resort. I've tried many things but nothing has really helped.
I am a 20 year old Cystic Fibrosis sufferer with chronic chest infections. I have a Pseodomonas Infection that's going on 12-15 years and many before
that but that's not really what I am worried about at the moment, even though its multi-resistant there are still antibiotics that have an effect on
it, although it doesn't eradicate it. It's kind of like cutting the grass, I take IV antibiotics every so often to cut the infection back.
The one I am worried about however is a nasty bug called Atypical Mycobacterium Abscessus and it's extremely hard to eradicate. It's a bug that's in
the same family as TB but it's worse than TB.
Nontuberculous mycobacteria (NTM) are a heterogeneous group of organisms that occasionally are a primary cause of lung disease but more commonly
affect patients with underlying chronic lung disease such as bronchiectasis, pneumoconiosis, or healed tuberculosis (1, 2). From an epidemiologic
perspective, patients with cystic fibrosis (CF) are at high risk of NTM infection, but the clinical signs and symptoms of NTM are often difficult to
distinguish from chronic bacterial pulmonary infections found in the advanced stages of CF.
Atypical mycobacteria are obligate aerobes that can be found in the environment in soil, water, vegetables, and even in domestic animals and dairy
The mycobacterium is resistant to nearly all antibiotics and we have tried to eradicate it with no success, the only antibiotic it is sensitive to is
Tigecycline and I was only able to tolerate that for about 6-8 weeks before I went into renal failure and lost most of my hearing. The regime
consisted of Doxycycline, Clarithromycin, Tigicycline and Amikacin and it didn't touch the atypical, after that I was on long term IV and oral
antibiotics for almost 2 years with no success.
I have a lung function of about 23-25% at the moment and having the atypical really complicates trying to go down the transplant route. I've tried two
transplant centres, the first gave me a resounding no because of the atypical mycobacterium and the other centre is concerned as it heightens the risk
of fatality during a double lung transplant. I've been trying to go down the transplant route for almost two years now and time is of the essence.
I have an upcoming hospital appointment this week and it would be great if I could have some information to take up with me to discuss with the
doctors. I'd probably be going up a few times over the next couple of weeks as I feel it's time for some more IV antibiotics.
I've decided to ask if anyone has any idea of things to try, are there any herbal or alternative therapies that can help? I know I probably won't
eradicate it this way but anything that can help is a step in the right direction.
I've gone as far as I am probably able to go with the antibiotic side of things, I know I won't find a miracle but anything is better than noting and
I'd rather try and fight it then sit back and let it take over.
I'm off to bed now as it's late here but I'll be sure to check back tomorrow.
Thanks in advance everyone, I really do appreciate it.
edit on 7-1-2012 by CheekyRob because: Changed Title