Dear Kirsten,
I have had everything you have presently and can give u several answers. First, I don't know if this Patient site has a blog for NTM but if they do you'd surely get some good replies from the people suffering from NTMs. I do know I have talked about it on this BX space but only in the context of how I got rid of mine. If there is one for NTMs you would get better answers from them since they can tell you first hand what to expect. I did lots of reading online to learn about NTM.
You don't say what your NTM is. I had gordonae and I had avium complex. Neither one did I want treatment for because of the severity of the treatment And gordonae was said to usually be a 'lab contaminant'. You don't say how old u are.
You are in the hospital from the sound of it and that's good you are because you need the antibiotics for the abscess. I had a lung abscess but I was only 13 and I had penicillin for it and that was fine. The bad part is that years later it has caused damage to the lungs which caused scar tissue and I'm told that leads to other things in future. I am now in my 70s. Four or five years ago I got two NTMs at two different times but they did not make me sick. They just showed up in the sputum tests. I joined a support group for that but found out I wasn't sick like most of them were. I went to an Infectious Disease Dr. who actually did me a great favor and warned me about the drugs I'd have to have and she said she wouldn't take them. So that was another warning for me. I called the health dept.and told them about my sputum results because some of those NTMs I think have to be reported and they referred me to a National Jewish trained Dr. at a teaching hospital where I live (I'm in the US) and he just wanted more sputum tests (he said he doesn't want CT scans because they are so changeable in their results, but he loves sputum as he says he can rely on it). I thought that was crazy but he was a specialist in NTMs and surely knew what he was talking about.
I was also going to a natural doctor at the time and for the NTM specifically, he put me on IVs of Vitamin C for 10 wks. As I said I did not feel sick and the IVs didn't make me feel different altho I felt maybe healthier . they test your blood first to see how much your body can tolerate at first and then they increase it the next time. When I had my next sputum test at the end of 10 wks the NTM was gone and no pseudomonas either which I'd had show up prior to that. (By the way I get rid of pleurisy with lots of extra c - it takes mine away in a day) That was as I said years back and I have not had an infection since - I think I had another sputum test after a year, just to see, and it was clear. SO the NTM can colonize in your lungs but doesn't have to make u ill.
Since u have an abscess that may not be the case with you because that is very serious and likely you'd have no way of knowing if the NTM was making you sick.
Now you don't have much choice but to go along with their treatment and you have to get the abscess gone and that could take awhile for that. It's too bad that they are giving u treatment for the NTM because how do you know if it was that making u sick or just the abscess? I would have wanted to talk about it and get more opinions and I really don't know how I would handle it now that treatments have begun although I suppose one could always stop the treatment once you leave the hospital. As you say the side effects are horrible and it's time consuming having the necessary testing several times a year and most people do not tolerate the drug regimen and get off the drugs and then get on again or try different mixes possibly only to find them not working well either.
I think if it were me in your situation, if one is available I'd go first thing to an alternative medicine doctor or naturopath or whomever in your area deals in natural treatments and does Vic C IVs and just make an appointment and check it out asking of course what effects could be had from all the antibiotics they are now giving you, if Vit. C can be taken that closely to the Abs. etc. etc. Lots of questions there. I wish you much luck and just know that your hospital may not have other patients being treated for NTM but there are people outside the hospital treating themselves at home and going to Infectious Disease Doctors and as I understand it NTMs are growing here in this country. I suppose you know you get the bacteria from water (shower heads that are old), earth, planting supplies or dirt in the ground or around water and in the air. We all are exposed to these bacteria every day but it's when they make us sick that is important to treat. I work with plants and suspected that's where I picked mine up but can't prove it. They do say to clean your shower heads with white vinegar and kitchen drinking water - I keep my water on the hottest setting so it 'boils' away bacteria in the pipes or whatever and don't inhale steam when having a shower but keep it cool. So many things to learn.
Please let us know what happens and if you are able to even find out if you can have time to check out alternatives. They sprung this on you all at once in the hospital - what a shock that is. Also - if you did get off treatment (due to some side effect) you can always later get back on again if you wanted to try something else to see how your body would react. If you are very young I'd want to try anything else. Because the abs could weaken your immune system to where alternatives may not be able to overcome them.
By the way, my pulm. dr. sent me right away for the antibiotics to the Inf. Dis. Dr. and he never did understand how I could refuse treatment and he never understood why it never made me sick. I guess my body was stronger than any of us knew. He was happy later to learn that I'd done so much research on my own but being a medical doctor he just didn't understand it.
Tabatha