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

Hi Heather @heathert. Yeah, imagine if people with other diseases all had to wait 8 or more weks to get the results from blood tests or biopsies ! There would be riots for sure.
Usually these days I seen to be okay waiting until about week 5 or 6 -- after that I steadily get more and more crazy with the waiting, LOL.
All could be shortened for the patient if labs used Real-time PCR (qPCR) machines to look for MAC/MAI DNA -- we'd know we were positive a lot sooner

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.

Bill, my X-ray also showed hyperinflated lungs. And it didn’t make sense that I had COPD with my PFT results. I was told it was because of my anatomy too.

Thanks for lettimg me know @goatlady. You poor thing! I hope you recivered quickly after stopping the Arikayce. I;ve read that the original drug -- Amikacin ;; can cause tinnitus and deafness. I was really hoping the liposomal inhaled form wouldn't do that. It's all just luck isn't it?

Sounds like a worse form of what happens for some of us with Azithromycin. That gave me tinnitus in the first 2 weeks, and continues to give me some diarrhea too. Now after 2 and a half years it's also giving me Long QT heart problems as well. I need to be ECG monitored every 2 or 3 weeks. (I just had another bout of that).
If I hear of any alternatives to Arikayce in the future, I will let you now.
Hugs from Annie

This discussion re: delays in getting lab results reminded me that we’re using drugs that were developed for other diseases as Mac/NTM is considered an orphan disease and hasn’t been profitable for pharmaceutical companies to invest in research and development.

It’s coming 2 years since I read on this forum that SPER Therapeutics was close to the trial phase in the development of a drug specifically for Mac/NTM. I haven’t heard anymore about whether they are getting closer to making this drug available.

Has anyone been following this?

Dear kathyhg,

Thank-you, for adding to my list of things to research. This MAC is pretty new to me, as i am trying to figure out what is wrong with me.
If you care to read it, here is a link;
https://connect.mayoclinic.org/discussion/throat-radiation-after-effects-aspiration-suffocating-mucous/
Thanks again for the insight.

Hello poodledoc, Sounds like you went to more than one Pulmonologist until you finally got service! After my Bronchoscopy last October, the second opinion Pulmonologist said he could find nothing that was causing the choking mucus. That was that, because his office will not answer phone calls. Not knowing me--and if I were to read what was just written--I would probably be thinking "she must be some kind of irritating nut, for the doctor to ignore her!" My husband says to tell you I am not!!! Haha. Really, there is no reason for the doctor to treat me this way, and it is very confusing and hurtful. The last time I spoke with his office, his nurse was yelling at me on the phone saying they would not prescribe antibiotics. I asked her what was I supposed to do, die? Without antibiotics, the mucous changes consistency which is impossible to cough up no matter what method is used. The nurse just laughed. So, for the 20th time, it was off to the ER, because my throat closes up. Only then, after it is critical, will antibiotics be prescribed. This vicious cycle is ongoing. The part that is really confusing is, they did find e-coli in the Lavage sample, and MRSA, plus Stenotrophomonas Maltophilia in a sputum sample. I was once again in the ER coughing up blood, and barking like a seal in a futile attempt at getting the cement in my lungs to break loose. Sorry, no jackhammer available. Honestly, if they do not figure this out, my life is surely going to be cut way short. Thanks for your kind reply, and I hope you feel better.

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

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.

Hi PSSurfer,This is all new to me and I don't know the extent of my illness but I wanted to share what seems to work for now. So I get up in the morning and take a one hr walk. When I get home I do an hr of yoga. After I do inversions like the plow or shoulder stand, it stimulates mucus and I release small gobs of greenish mucus. Ill do standing poses and keep clearing mucus. When I finish Ill use the aerobika for 10 minutes and that usually clears white mucus. Then I have usually a bowl of fruit for breakfast . After that say within a half hr I'll use my nebulizer for two treatments. One is budesonide 0.5 mg. 2ml. The other is sodium chloride 3% 4ml. These give me added mucus clearance. And I seem ok after that. I repeat the solutions toward evening. I started this a week ago and observing how all of this works out.