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My MAC and bronchiectasis treatment
I have been diagnosed with Mac disease and bronchiectasis 15 years ago. I've had many bouts of pneumonia and bronchitis. Finally my local Dr in Naples FL has said that I have active MAC issues going on and he wants me to go on the 3 drug plan for 18 months. I am very interested in hearing from others that have tried this plan and see if it is worth doing in the long run. I have heard that it sometimes makes you nauseous and you lose weight. And from other friends that have already been on this plan and they still have many issues with both of these diseases. One has become resilient to taking many antibiotics and they are no longer effective. I feel like maybe I should just make sure that I have the pneumonia shot every other year and take elderberry, vitamin C, echinacea, probiotics and airbourne every day and give that a try and see if it is effective before doing the 3 drug program. I'm afraid that it will damage my organs etc because they are so strong. Any suggestions or help from others would be appreciated. I did have a bronchiscope done and sputum test and breathing test all came back with bad indicators of my serious problem. Thanks.
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@unicorn I started having palpitations about a year before I had my MAC diagnosis. That’s what sent me to the Dr to start with. It was during an x ray and then subsequent CT scan that my Dr saw the nodules and then the NTM and bronchiectasis diagnosis came after my hemoptysis. I had then also been Dx with atrial fibrillation (A Fib) and had an ablation procedure. I wonder if the shortness of breath could contribute to the palpitations. I haven’t had it again since the ablation 2 years ago and I’ve never taken any of the antibiotics for the NTM. Just another mystery of this disease.
Gina
any heart problems before the palpitations? high blood pressure or cholesterol, smoke or drink, sedentary??
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1 Reaction@unicorn I had never had ANY medical problems before the palpitations, and I wasn’t on any type of medication. I barely took antibiotics if I got sick. Excellent blood pressure, cholesterol and weight. When I went to the Dr the first time it happened, I asked if it could be a symptom of menopause. I was 54 and had started menopause. I was always a very healthy, athletic person; gym, Scuba diving, sports, hiking, vacations etc. No heart disease in my family. Menopause was the only thing I could think of. My parents were smokers and I did smoke, but I had quit about 20 years before. I do drink occasionally, but not excessively, and I never did any types of drugs. I don’t know when I got bronchiectasis or MAC/MAI, or if one thing had anything to do with the other, (meaning palpitations and lung issues). I’m just glad I don’t have the palpitations anymore. Good luck and I hope you have your answers soon.
Gina
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2 Reactionsthanks Gina, me too. I think mine is just another complication of the MAC, or the hiatal hernia and gerd which is also complication of the MAC. !
@unicorn Crista!! So glad to hear from you! You have been on my mind a lot. As for the heart palpitations, YES! I was getting them a lot also. I was told I have SVT (superventricular tachicartia) I was put on heart meds; Cartia 240 mg. It has helped a lot. I sleep with oxygen and use it at the gym; so I think the oxygen supplementation has helped. The heart and lungs work pretty much as a unit. When the heart is bad, the lungs falter. When the lungs are bad, the heart suffers. I find it interesting that heart palpitations are shaping up to be a common thread with this disease.
Hi! Thanks Terry, see cardiologist Thursday and will read her your email. I am trying to avoid meds, but may have to go on something. The plant based diet (with a little cheating) helped my cholesterol and sugar go down so doc said to just keep doing what I'm doing, a little encouragement. I can deal with the bowels, the hiatal hernia, the gerd, but the heart is really scary. I told my son if I have a stroke to just throw me in the ocean, as I will not go into a care home.....I cancelled Europe this year but am going on a dog vacay up to Big Sur! Staying in country close to hospitals in gorgeous areas. xo
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1 ReactionI have the nodular form of MAC and tried the 3 drug cocktail about 12 years ago. After 2 months I had severe joint pain and swelling from a reaction to one of the drugs that has no alternative. My doctor said there was no guarantee the the MAC would be eradicated with 18 to 24 month treatment. We decided that the cure was worse than the disease and I stopped treatment. The MAC has remained fairly stable as shown in CT scans. My bigger problem is Bronchiectasis and pseudomonas. I’m trying various treatments for those with with disappointing success. Good luck.
@rosalynclifton I'm sorry to hear you are struggling with bronchiectasis and pseudomonas for so long. Bronchiectasis can be particularly scary since there really is no cure - only management is yours stable or does it seem to be worsening?
I have been lucky that my condition, other than the infections with MAC and pseudo, is fairly mild, my lungs are still working okay and are able to produce a good cough for clearing. Both my husband and I found pseudomonas hard to beat, but inhaled Tobramycin finally knocked mine out. He was on 4 different antibiotics before his infection finally responded to doxycycline.
What treatments have you tried?
Sue
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3 Reactions@rits Hi Rita! My fingers are crossed that your next sputem tests come back negative. I cannot remember, are you nebulizing saline presently?
@rosaclifton