(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hi, Connie-

I am so glad I came across your post. You sound like you are in the same situation as I. I was diagnosed in October 2020. One of the most terrifying symptoms I am having is my throat closing/swelling. When it is at its worst I I feel like I have to sleep with my head in just the right position or I am not going to get air through my upper throat. I have had about 15 good days since I was diagnosed and this was about 3 days into a 10 day course of Augmentin through about 4 or 5 days after I took my last dose. I have just been given another prescription of Augmentin by my GP but I feel like it was against his better judgement and I am terrified of the side effects that he says it may cause but the terror that I am feeling without taking it is worse. I have had 3 trips to the ER since October and I have trouble having them listen to me when I say it is my throat and not my lungs that is causing the panic. I went to an ENT and he did a laryngoscopy and said that reflux had damaged and irritated my voice box. I have had an endoscopy, a 24 hour pH-Impedance test off of my acid reducer for one week and an esophageal manometry test. Minimal/Normal results and they told me I didn't need to take my acid reducer anymore. I still have bacteria growing in a lab somewhere. The worst part of all of this is that inhalers, nebulizing and my Aerobika device make my throat situation even worse so I have only been able to do deep breathing and huff coughing for airway clearance. I also feel like I have other strange symptoms when I start to spiral like my legs feeling heavy and numbness in my toes and fingers and also my fingers being weaker. Sometimes I can hardly get the top off of a bottle of water. I will keep you posted on any developments that might be helpful to your throat situation that I find on my journey. I am so sorry you are feeling badly. This is all terrifying.

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Hope you’re now with another doctor. No one should put up with that rude behavior.

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Dear cavlover, I am a catlover! Really though, thank-you for support. The (I was going to say the funny thing is) not-so-funny thing is, the hospital that the doctor works from has horrendous reviews. I about fell off the chair the other day. I was looking up medical records for this hospital, and the reviews for it popped up....about 100 of them spanning the last four years. There are only a few that have more than one star out of five, with most people stating they would not have given it any stars. They had to leave at least one star, for the review to be published. It is sad to say, but it did make me feel better knowing I am not alone. That Isn't very nice of me, but human unfortunately. One review summed up all the others when it said to only go to this hospital if you want to die! What The heck is happening to our healthcare system? When I was a kid, my folks always took me to military hospitals because my dad was a 22-year Marine--survived The Chosin" Reservoir conflict in WWII. Those hospitals were the greatest...at least treating kids like me with earaches and such. Now, it IS like they want you to die. Do they? Or, do they just not care when a person gets old?
Thank-you again for the much needed support!

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Please take me off your email list you're driving me crazy with 10 to 15
emails a day

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Yes Sue, I've looked at quite a lot of that research too. qPCR machines (Quantitative or Real-time PCR machines) are better now at detecting small amounts DNA of NTMs.
My feeling is they could start beingb a lot 'kinder' to the patient....(especially if you must have bronchoscopies and can't get info out of a hospital without a long wait).
Most of us only want to know if we are still sero-positive for an NTM. They could use a qPCR machine to quickly tell if we are still positive FIRST, (i,e, if they still find any mycobactetial DNA) and relay that info to us much more quickly. Then the exact NTM disease typing could take longer after that. A lot of our tests are just looking for persistence of the same NTM we were originally diagnosed with. To wait so long for any results EACH TIME is very unfair to us patients.
But instead they continue to do it the cheaper, older way, slowly growing the bacteria in a dish, and make us wait and wait and wait.

I'm just grumbling, LOL. But I really do think most other patient groups with other kinds of diseases would complain a lot. The long long delay we face each time just makes me feel like the system doesn't care much about us.

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On the topic of nebulizer/Aerobika use. I use the two attached to each other with 3% saline. I do this while simultaneously running my vest for 30 minutes. My pulmonologist recommended this approach. Mucus often comes up after the first 10 minutes and continues later in the vest/saline/Aerobika treatment. Sometimes there is nothing substantial until after the treatment or when I subsequently nebulize Perforomist. If I drink water or a citrus drink after the treatment, that seems to help bring up the mucus. With brochiectasis and a pseudomonas colonization, my lungs are producting a lot of mucus. I'm only taking azithromycin at this time. I've been off other antibiotics for the pseudomonas for at least 6 months. I'm convinced that keeping my lungs clear of a mucus breeding ground with this vest/saline/Aerobika treatment is the reason. Have others followed this or a similar approach and share my speculation about effects?

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Hi Sue thank you for your answer. You have wonderful answers and knowledge about the field of NTM and always are right on the dot of controversy in such a kind way. Does Mayo have a research clinic that they could answer this or National Jewish or NTMIR as well? Could the mentors get this inquiry to Mayo’s Drs of expertise/research. It would be very interesting for all of us for them to answer this. Thank you—

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@karensarasota You have to change your own settings and/or notifications in your profile to not receive emails. Unfortunately, I’m not sure how you do it so I can’t help. But I’m sure one of the mentors can help you.

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I did it in the unsubscribe area at the end of an email and after a year I missed it so much I sign back on!!!!

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