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Newly diagnosed
Hi. I was diagnosed with MAC and bronchiectasis in July. I just saw ID and have 3 more weeks before starting treatment. I'm delighted I found this group. I have spent the last 2 months with Dr Google and it did nothing but raise more concern.
My symptoms are chronic cough with occasional blood, constant throat clearing, weight loss, heavy chest and an indescribable feeling in my trachea from the inflammation.
Did anyone else have a long wait period before starting treatment? I'm actually ok with it. But 2+ months seems like a longtime to go without support.
Again, I'm glad I found this group. I have found it very helpful from an anticipatory perspective.
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I always had acid reflux and gerd so I suppose my not feeling well was attributed to that. Then I started loosing a lot of weight and they started to look into what was wrong more closely. Xrays and Endoscopies showed damage and the Drs finally woke up that it was serious and finally diagnosed it all as MAC,
I wish you luck and keep going on this site as everyone is very supportive and knowledgeable if you need help.
Jane
Barbara, gave you really good advice and Scoop sent a list of other clinics. Both my Pulmonologist and ID doctor told me NJH is the best. Be aware that nebulizing is what we are all doing and some of us were lucky enough to start immediately upon receipt of the diagnoses-prior to antibiotics. Also, keep in mind that most local ID doctors treat a wide range of infections and are not necessarily experts and/or up to date on the latest NTM research. My concern is why hasn't anyone mentioned to you the importance of airway clearance and nebulizing with 7% hypotonic saline. Do you have MAC cavity disease or BE nodular disease? I have a great local ID doctor, but she is not an "expert" in just NTMs, which is why she supported me to go to NJH. What really impressed me about my local ID dr was that she did not feel stepped on when I told her I contacted NJH. Not all doctors will react that way. My local ID doctor told me she has my NJH doctor in her cell phone contacts and they talk. When I went to NJH, everything changed. My treatment changed and recommended dosage on 1 antibiotic was cut in half-that was the 1st week. My local ID doctor also told me I could nebulize 3% saline and NJH stressed the importance of 7%-which my local Pulmonologist agreed-7% unless you can't handle. I was very fortunate; I was only on antibiotics for 3 weeks prior to NJH determining I could go off the antibiotics-that was the 2nd week when my count and all test results were reviewed. Had I not gone there, I would have been on some really nasty drugs for about 2 years, with only a 45% chance of "culture conversion" for MABC. Macrolide resistant MABC is much harder to treat than MAC. I am currently testing negative but unfortunately MABC has a 50% recurrence/reinfection rate. So, I may be nebulizing 2x/day for the rest of my life-but it's helping keep my lungs clear of all infections. I hope this helps. I can't stress enough the importance of saline and airway clearance.
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3 ReactionsThe weight loss is a curious thing. They say it's from loss of appetite. My appetite has been great. I have lost 8 pounds but I have a small frame. As my friends say 8# I could not afford to lose.
I don't think science knows exactly the mechanism for this weight loss??
I am currently stable at my lowest weight. Inability to gain weight is now the issue. Although for me I am still at a healthy BMI but I need to be conscious of getting extra healthy calories or I will lose more.
Did your weight stabilize after treatment?
Christine
That's a mouthful but I think I got it.
I just heard from my ID and they are still waiting for the results on resistance?
I think it's nodular. Definitely not the other one. I will confirm.
Thank you!
Christine
Hi. I have learned so much from this group! I like my pul doc and ID doc but I was only prescribed the Big 3 and nothing else. I have ordered the Ombra nebulizer and the Aerobika device and wonder why docs didn’t suggest them. I’m anxious to get going. Have been on the three antibiotics for three weeks and so far so good. I saw my ID doc this morning and he said that is the case more often than not so I hope that all goes well for you. The initial diagnosis and learning period is the hardest. Once you get your protocol and timing of meds and airway clearance it will feel much better! You are on the path to a good resolution!!
Thanks Kris.
I'm just about to message my ID, who I think is a good fit by the way, to ask about nebulizing.
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1 ReactionSorry, maybe too much info. Nodular MAC, if not macrolide resistant has a standard treatment protocol, so maybe not as important to rush off to a specialty clinic-as it was for me, but nebulizing is important. Attached is a study that you may find helpful, despite the small study group size. I could not find the UK study that had a larger group, but fortunately Univ of Portland will be starting a study this year with 100 participants. Good luck to you in your treatment!
Outcomes of hypertonic saline inhalation as a treatment modality in nontuberculous mycobacterial pulmonary disease _ European Respiratory Society (Outcomes-of-hypertonic-saline-inhalation-as-a-treatment-modality-in-nontuberculous-mycobacterial-pulmonary-disease-_-European-Respiratory-Society.pdf)
No. Not too much info. It's all good.
I want to take an active part in this thing.
Thank you for helping me sift through it all.
My Pulmo says the weight loss is from the body fighting the infection.
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2 ReactionsThank you for responding. I know my weight loss was a red flag but my pulmonologist never explained it.
I am surprised there is zero counseling on how to prevent further weight loss. Because once it's gone it's very hard to gain back. I can't eat any more than I'm eating now and my weight just hit an all time low. Again, I'm still in an ok BMI range. 2 more weeks until treatment starts.
Christine