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My ID's Plan for Me - Your Thoughts
I'm new to this awesome forum and have already learned so much reading your posts. Following blood work, CT scan, and a bronchoscopy I was awarded the distinction of becoming a member of the Bronchiectasis club. Being an over achiever, the biopsies and cultures earned me merit badges for pseudomonas, aspergillus, and mycobacterium abscessus. The ID doc had more questions for my pulmonologist on the pseudo and asper, but here’s her plan for attacking the MA.
She is starting at it with three antibiotics, two of them by IV so I would have a port installed. The IV drugs are Tigecycline (possible nausea) and Amikacin (possible hearing loss), - and a once a day pill, Linezolid. Several other options were ruled out because of antibiotic resistance. If this regimen is approved and I start (it is working its way through the insurance jungle as you read this), I would be going in weekly for blood work to determine if other organs are being affected by the IVs and inspect/dress my port. I brought up hearing loss from what I had learned here on the forum, and she said to notify her immediately if that became the case. This would be my routine for a minimum of 6 months. I have no problem with doing what I have to do. My only concern is getting sidelined by side effects.
There is also the possibility of imipenem - not sure if she said that was definite or not.
So, for you experienced folks does this sound like a reasonable approach for attacking what I have?
PS: I’ve been nebulizing Tobramycin for almost 2 weeks along with all my other nebulized medications. MY THROAT!!!!!! I brought some honey thinking that might help sooth it. Then after checking with Dr. Andrews, I took a spoonful prior to nebulizing thinking it might coat my throat and give me some relief...it seems to have helped. So it appears that, in my case, a spoonful of honey helps the medicine go down!!!!
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I'm new as well. Joined yesterday. I feel for you. My diagnoses were in the opposite order of yours. First I was diagnosed with Primary Immunodeficiency, then MAC. I'll be starting Immunoglobulin G monthly infusions Wednesday. After I get a few of those in me, I'll be taking rifampin, azithromycin and ethambutol orally. All of these can have some nasty side effects. I'm praying for minimal side effects and maximal healing. Same for you as well.
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4 Reactionsmpowers. I've done Toby off and on for four years. I've gotten more and more sensitive to the treatments. Last round of treatments I decided to try throat cough drops, i.e. Halls. I put one in my mouth a couple of minutes before starting the nebbing and it seems to help me. Good luck and you navigate this infection.
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5 ReactionsI cannot speak to the MAC treatment, but one suggestion for your throat issues after Toby: My ENT suggested nebulizing 0.9% saline after the Toby as a "vocal rinse." You can buy it without a prescription from many different sites. It has helped me not lose my voice quite so much. Maybe it's something that would soothe your throat.
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5 ReactionsSounds like a very aggressive treatment! You must have very heavy loads of those 3 to have gotten that treatment right out of the gate. Consider going to National Jewish Hospital if that is the case. I was also diagnosed with bronch via CT, MAC via several sputum as well as asp and another bacteria Serratia marcescens. This was all over the last 6 months. I'm feeling really good now, took 2 antibiotics for 60 days each, not any of the big 3 tho.
Anyway....after my initial diagnosis I was told that NJH was the best and so I made an appointment, took several months, I go in June.
Best of luck, this is a really great group and I'm sure you'll be learning much just from reading from other patients and their experiences.
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2 ReactionsSo sorry mpowers — that’s a lot to deal with all at one time, but your attitude is awesome.!!
Besides honey, I’ve found very thick cold yogurt works for my throat after nebulizing. I can’t do dairy, but I use the almond milk or coconut milk yogurts.
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2 ReactionsI have Bronchiectasis with Pneumonias and was initially given Albuterol, 7% Saline and nebulizing with the Aerobika and the vest. Then I started inhaling Tobramycin for 4 weeks on and 4 weeks off. This totally destroyed my voice & throat. I used everything possible to help my throat and then I thought of Manuka Honey. I nebulize Toby now for 2 weeks on and 2 weeks off and religiously melt a teaspoon of honey to coat my mouth when I am done. I haven't had any issues with my voice or throat since.
Isn't this group of members amazing! I have learned so much from everyone and I am so grateful to have found you all.