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Update about my wife, the insurance will not pay for the Amikacin "$14,000 a month" until her last sputum test comes back, her last treatment was the end of January, the pulmonologists wanted to keep her on it till 10/2024 1 year, we lived in CA. till 2019 we moved to FL. Doc. office is not very good keeping her in the loop, she doesn't have aids or HIV, she wasn't diagnoses with Mac till 1/2022 they said she's probably had this for years " miss diagnosed for many years.

I am sick of suffering from Mac. I never feel well. The big three make me sick to my stomach. The abs are the least of this disease. Mac itself is the cause of endless suffering. . This horrid disease is extremely slow to respond to medication. . I don’t have sputum even with nebulizing three percent saline and Levabuterol. I cannot be monitored by sputum testing. I had an alveolar hemorrhage during my bronchoscopy , so I’m not doing that again. I almost died and spent two weeks in a hospital because I could not breathe. When I got out I couldn’t even stand up. After five months of treatment I am only somewhat better. I’m tired of doctors trying to put a good spin on any of this. It sucks in every way. Where I live in LA I have found no pulmonologists who specialize in ntm. Can you image one of the biggest cities in the US having no ntm specialty clinic? The whole experience makes me very angry and depressed. 😢

My wife has been diagnosed with MAC, she’s been taking the 3 antibiotics now for about two years, Mac has not gotten worse or better, the doctor had her have a Bronchoscopy, after having another chest X-ray he put her on Amikacin, it’s been 3 months!

People should try thyme tea. You can just make it out of the loose herb, like what you buy in the spice section. Use about a tsp. It definitely helps to clear the extra mucus!

I have Mac histoplasmosis blastomycosis and valley fever and I don't have aids or HIV, I did have Lyme disease and rocky mountain spotted fever the year before I got sick. The antifungal, itraconazol hasn't made a difference in two years so they took me off of it and the three antibiotics were hard core hell and my body can't take it so they told me to stop them and tomorrow I have to get blood work done to test the toxicity in my body. So, now what? After the antibiotics, I feel worse than I had before. People need to know to test for these because two years were lost as dr.s thought that an x-ray was all that was needed and they misdiagnosed me with pneumonia. Take care of yourself and each other.

My infection has long gone but I'm still having a bronchiactasis flare up 8 weeks on. None of the three types of inhaler are working. Nights are horrendous. Mornings worse. I feel like I have a steel wool pot scrubber in my upper airway.

I have what you are talking about I walk my husky every day and when he pulls me my air gets build up then I can't breath.I have COPD inflammation . I got really sick the last time I was hospitalized for a week then it took me 5 months to feel like I can breath without using my oxygen. Bending and reaching is when I can't breath its very scary when you are having this problem. When I watch your video it describes exactly how I feel and the causes that effects my breathing

I need to get sputum up so I don’t have to have another bronchoscopy. Nothing helps

My ID Dr says pain isn’t a symptom of MAC . I m in a lot of pain

Very painful

I’m on imipenum, Amikacin and Linezolid

The reason NTM is in the soil is because the DOD is spraying us with it because they are at war with the human race MF.

This was very helpful to me. Additionally, there is much so more information, all new to me. I have a fairly new diagnosis (under 1 year) of Bronchiectasis & asthma (and previously some allergies). Thank you.

Very good information. Curious about the new sound wave clearance . Did not find the one pictured. Where can I find this to get additional information?

What happens if I get PICC line and can’t tolerate the antibiotics?

I'm a trach, and ventilator patient, and I've grown Pseudomonas since I got knew it in 2016. I got my trach in 2015, and the next year, I had Pseudomonas. I went on Tobi several times through the ventilator, and Nothing worked. Finally I ended up with another pulmonologist in the same facility, and she doesn't want to treat it. She sees no reason to. I had thick secretions, but since receiving an Aerogen nebulizer which I use in line with the ventilator, my secretions are thinner now.. She said treating it would involve putting me in the ICU. So it looks like I'll have bugs in my sputum for the rest of my life. Not only have I grown Pseudomonas, but I've grown other bugs in the past. Let's just hope I don't end up in ARDS.

I'm a ventilator patient, with a trach, who uses a cough assist, a vest, and a Volara. I couldn't get Pulmozyme because well I'm not a Cystic Fibrosiser. I tried the NAC. AND NEEDLESS TO SAY, VERY BAT REACTION. DO NOT GIVE A TRACH PATIENT NAC. I think they should be giving CFers NAC, and the TRACH/VENTILATOR patients PULMOZYME!!! Because these trach patients who are ON VENTILATORS, (LIFE SUPPORT), I believe that WE should get the Pulmozyme. But I'm not going to start droning on about that, because that makes me so mad. I'm growing bugs in my sputum, and my Pulmonologist doesn't want to treat that. So I know how it is not to be able to cough that up. IT IS HORRIBLE!!! HORRIBLE!! TO THE CFers. Be thankful you get all the fancy coverage you do. YOU ARE BLESSED, AND I am THANKFUL that you can live the long lives that you do. YOU DESERVE IT!!! To us trach patients, It's a nightmare. They wanted to refuse coverage for my Vest, because I'm not a CFer. And as for the Volara, We've gone through TWO, Not one, but TWO Medicare trials because they denied the Volara device TWICE. They gave it to me, but I was informed there could be another round of denials, and appeals. I'm already bracing for that, and I'M READY! I AM READY TO FIGHT. I fight for OTHER ventilator patients, who have issues similar to mine. Yes I have Atelectasis. And Yes, I have never had a negative Sputum culture. It's ALWAYS growing at least three or more bad things in there. I'm currently positive for Pseudomonas. But I believe that the trach and ventilator patient, SHOULD HAVE THE ABSOLUTE HIGHEST PRIORITY when it comes to airway clearance. The TRACH and vent patient, and the patient with Bronchiectasis!!! These patients NEED THEIR AIRWAYS TO REMAIN AS CLEAR AS POSSIBLE!

Experimental ? This clearly helps ppl.

👍

I have recently diagnosed with bronchiectasis and I try to learn more about the disease, my question is how often I need to go to my lungs specialist to reassure me that all is ok I start treatment with spiriva respimat 2.5 mg inhaler And carbocisteine 375 mg , I have asthma and I take for asthma duo Resp Spiromax

I had my breast implants removed 4 years ago, and developed a chest wall infection on one side, despite being in two antibiotics. When I told the doctor preforming the surgery, that I was in excruciating pain, she sent me to the ER to get an x-ray and ultrasound, but they just saw a mass of unknown origin and gave me ONE Tylenol! No one believed I was in so much pain. Finally, I couldn’t breathe, and my incision festered, so the ER did a culture. Two days later they called me and told me to go immediately to my doctor, and he gave me a shot, steroids, cipro, and pain meds. The pain subsided within 12 to 24 hours, BUT I’ve had recurring leg aches every day since then. They are the same leg aches I had as a child until my 20’s. Im now 67, and get these every single day after that last surgery. I have to take pain medicine for that and my lower back, which may be Ankylosing spondylitis. Would this bacteria cause this pain? I can’t think of anything else that would have brought this on again. Thank you! 💕🙏💫

my public pseudomonas.

I must appreciate my wife who took it upon herself to take care of me even when all hope was lost. I thought I wasn't going to survive this Idiopathic pulmonary fibrosis disease I had but so luckily my wife found Dr Madida on RUclips, a herbalist that has cure thousands of people with his herbs due to our notice of his patients positive testimonies, so my wife bought me a herbal medicine from him which I used. Before i was on sick bed can't do anything but right now I play with my kids, play football with them. I have no obstruction on my lungs anymore, breathing freely without pains or shortness of breath. I am just living normally as a healthy fellow after using Dr madida herbal medicine and right now I must conclude that he cured me.

Thank you. I found this very helpful.

Thanks for posting this - VERY helpful.

Asthma is fully reversible? Please demonstrate.

Good basic information, thank you!