My MAC and bronchiectasis treatment

Posted by pal131 @pal131, Jan 30 9:00am

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.

Liked by girlbybay

@unicorn

just wondering if anyone is having heart palpitations with this disease?? I have been off meds for 2 years, destroyed my organs, and now the palpitations are getting much worse. High hemoglobin and hemotocrit, Possibly going on oxygen may help. Not the fashion statement I was hoping for.

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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

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@ginak

@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

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any heart problems before the palpitations? high blood pressure or cholesterol, smoke or drink, sedentary??

Liked by ginak

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@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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@ginak

@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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thanks 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. !

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@unicorn

just wondering if anyone is having heart palpitations with this disease?? I have been off meds for 2 years, destroyed my organs, and now the palpitations are getting much worse. High hemoglobin and hemotocrit, Possibly going on oxygen may help. Not the fashion statement I was hoping for.

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@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.

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@windwalker

@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.

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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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I 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.

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@rosalynclifton

I 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.

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@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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@rits

I started on the 3 drugs last March. I couldn't handle rifampin and my doctor said it was fine to drop it. There is a study going on at various locations to find if rifampin, the drug that most seem to find impossible to take, is necessary. After two months on the 2 drug regimen of 3x per week, my monthly sputum samples were negative for MAC. I have been negative ever since (fingers crossed for the specimen I dropped off yesterday).

I do have digestive issues but I also have an unusual digestive system due to colon cancer surgery. If all goes well, I will finish the drugs in June, one year from the first negative. I"m glad I am taking the drugs and grateful that they are working for me. I'm not very good at wait and see when horrible bacteria are sitting in my lungs.

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@rits Hi Rita! My fingers are crossed that your next sputem tests come back negative. I cannot remember, are you nebulizing saline presently?

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@rosalynclifton

I 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.

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@rosaclifton

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@marthachs

@pal131 , I’m so sorry you are needing to join the MAC club, but also, so glad to have you! In my case, by the time I started daily treatment with the “big three” I had a lot of fatigue and weight loss from the disease. After a month on the meds, my energy and appetite began to return. I've had other side effects (all things I can manage) but I can definitely tell that I’m better for taking the drugs. Now I’m worried about what will happen when I stop them in a month or so!

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@marthachs Hi there. I always worry too about people stopping their meds completely when they have finished their time. My dr was a firm beliver in 'maintenance' meds; which is what I am on now. (You can click on my photo icon and read about that) His philosophy was that mac usually returns because the reason you got it in the first place hasn't gone away, i.e. bronchoectasis.

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@windwalker

@rits Hi Rita! My fingers are crossed that your next sputem tests come back negative. I cannot remember, are you nebulizing saline presently?

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Thanks Terri. I brought in a sample on 1/29, first one since October, and, no surprise, I haven't heard anything yet. You may recall that Dr McShane left ME (waaaa!) for Tyler so the specimen sample was given to my general pulmonologist. Unfortunately, it appears that she only ordered the test for ntm and I also had pseudomonas and klibsiella. Those were gone for several months but I continued treating with Arikayce which I had to stop at Christmas. I'm concerned with whether they have come back and hoped for good test results but no test = no results. Sigh.

Dr. Mcshane is going to treat me from Tyler. I was waiting for test results but I'm going to reach out to her this week. I need to get her contact info in Texas from her nurse.

I use a Smartvest, aerobika and 3% saline 2x per day. My lungs which are compromised with severe chronic bronchitis as well as bronchiectasis cannot tolerate 7%. Rita

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@rits

Thanks Terri. I brought in a sample on 1/29, first one since October, and, no surprise, I haven't heard anything yet. You may recall that Dr McShane left ME (waaaa!) for Tyler so the specimen sample was given to my general pulmonologist. Unfortunately, it appears that she only ordered the test for ntm and I also had pseudomonas and klibsiella. Those were gone for several months but I continued treating with Arikayce which I had to stop at Christmas. I'm concerned with whether they have come back and hoped for good test results but no test = no results. Sigh.

Dr. Mcshane is going to treat me from Tyler. I was waiting for test results but I'm going to reach out to her this week. I need to get her contact info in Texas from her nurse.

I use a Smartvest, aerobika and 3% saline 2x per day. My lungs which are compromised with severe chronic bronchitis as well as bronchiectasis cannot tolerate 7%. Rita

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Rita, it sounds like you need to take the bull by the horns and INSIST your sputem be tested for the things you have had before, along with a suseptibility test. And INSIST on it being sent away to either Tyler, Mayo, or NJH for lab testing. Local labs like Labquest, etc., do not cut it.

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@windwalker

Rita, it sounds like you need to take the bull by the horns and INSIST your sputem be tested for the things you have had before, along with a suseptibility test. And INSIST on it being sent away to either Tyler, Mayo, or NJH for lab testing. Local labs like Labquest, etc., do not cut it.

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Terri thanks for your interest. My various organisms were susceptibility tested at NJH and Mayo last year. Azithromycin and ethambutol were effective against my MAC and my sputum samples have been negative since last summer. Arikayce was effective against both pseudomonas and klebsiella.

The testing for NTM requires that the sample be "washed" of all other bacteria prior to culturing. So, it is too late to test for these other bacteria with this specimen. I am waiting to hear what Dr Mcshane wants to do about future testing, i.e. will my samples be tested at U of Chicago or will I send them to Texas.

I first saw my new doctor at the University of Chicago in 2010 for a second opinion with respect to my shocking diagnosis of copd and bronchiectasis. Her opinion was that I was receiving optimal treatment from my Northwestern pulmonologist. Because all of my other doctors were, and are, at the more convenient Northwestern campus, I stayed there until the radiologists who interpreted my many ct scans reported that my nodules were indicative of mycobacteria. My Northwestern pulmonologist disagreed with the radiologists and said it was the bronchiectasis spreading. When she refused to test my sputum, I made an appointment for treatment with my second opinion doctor at the U of Chicago. At my first appointment with her, she gave me a specimen cup. When the test came back 7 weeks later positive for MAC in November 2018, she immediately referred me to an ntm expert, Dr Mcshane, who recently left Chicago for Tyler.

My pulmonologist is not an ntm expert and has no interest in becoming one. She is, however, a copd and bronchiectasis expert and, as a full Professor, teaches those diseases and mentors students in the U of Chicago Medical school. She told me that she will treat my underlying diseases but, if it doesn't work out with Mcshane in Texas she can refer me to an infectious disease doctor at the U of Chicago. She said that was her usual practice with patients who test positive for an ntm and that is what she did in referring me to Mcshane.

I'm sorry this is so long but I believe you have the wrong impression of me. The bottom line is that due to Dr Mcshane's treatment, I have been negative for all the crud that has shown up in my specimens since last summer. It is really bad luck for me that she left before my year of negatives was up. Rita

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@windwalker

Rita, it sounds like you need to take the bull by the horns and INSIST your sputem be tested for the things you have had before, along with a suseptibility test. And INSIST on it being sent away to either Tyler, Mayo, or NJH for lab testing. Local labs like Labquest, etc., do not cut it.

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Thanks again, Terri, and Sue as well, for your interest and support. You're the BEST!

I talked to Dr. McShane in Texas yesterday and she reassured me that she will treat my bacteria from there. The concierge at Tyler has contacted U of Chicago and Dr McShane's records with respect to me are being sent. I hope she will have all the test results, including ct scans and the bronchoscopy as well as her notes. Everything from the year I saw her here. I am so very glad to be her patient because she is such a great doctor and we have a wonderful rapport. We are in agreement with respect to everything, including my water aerobics in an indoor pool, my use of tap water and that my U of Chicago pulmonologist has no interest in treating lung bacteria.

I was anxious to hear what Dr. McShane would say with respect to my stopping Arikayce at Christmas. She said that I was right to stop and she does not want me to take it again. However, she wants me to continue the oral antibiotics until June, one year after the first negative. She had said that I might be able to stop earlier but has decided that she wants me to have the full treatment so long as I am tolerating the drugs.

I will be sending my sputum samples to her in Texas and will send one for that second test that wasn't ordered in Chicago. She said that, after two weeks at Tyler, she knows that the lab receives samples from all over but she doesn't know the procedure. She will find out and let me know.

As for going to Texas, I told her that, if she believes it is necessary, I will come. But I don't want to!

It was wonderful to talk to her again. Rita

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