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Reply To: FYI: article on substitution of Avium for Abscessus during treatment

Home Forums NTM Support Forum FYI: article on substitution of Avium for Abscessus during treatment Reply To: FYI: article on substitution of Avium for Abscessus during treatment

#5080
Jacquesmossjacquesmoss
Member

Pipsqueak,
I do not know if there is a right or wrong decision in your case but let me enlighten you with what happened to me. I was diagnosed with M Abscessus some 8-9 years ago and the my doctors decided that NTM was just ‘colonizing’ my lungs and not ‘infecting’ them so they decided not to treat them. Like yourself, I agonized and worried and finally went to NJH where they proposed an aggressive treatment plan. My physicians here were not too keen but I insisted and finally they started the treatment with i.v amikacin,etc. within a few weeks, I had to give it up due to toxicities. My physicians did not want to follow through anymore. I lasted another few years and then started to loose weight, lung function – they sent me to be evaluated for a lung transplant – I went for one meeting and came back and decided that maybe I could get this thing treated.
I got accepted at the NIH for the clinical trial and have been on aggressive treatments since then under the care of Dr Olivier – he is the best. Granted it is a tough route to take but I am doing well. I have been told that I would probably have to take these drugs for a very long time – probably for life since the disease has progressed and eventually head for a transplant if I choose to go that route. Right now, I am doing quite well and am confident that these treatments have helped me tremendously. I was never a big fan of antibiotics but I have to admit, they do do the job. I am pleasantly surprised at what I have been able to accomplish since I have started the treatments. The toxicities were difficult intially but once my body adapts, I do very well thereafter. My local doctors are always putting up a big fuss to give me antibiotics but I stick to the plan and I have to say, it has worked well for me. There are not many physicians out there that know how to treat NTM and they do not want to learn. Its sad.

If I were you, I would get myself in very good hands as soon as possible and they exist out there. Its a tough decision but inform yourself as much as you can and then make a decision.
Jacques