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suzylulu
@suzylulu

Posts: 42
Joined: Feb 02, 2017

MAC symptoms

Posted by @suzylulu, Apr 23, 2017

I was diagnosed with MAC about 6 months ago but have been on the 3 medicines for almost a month. What are the symptoms of MAC and the drugs. I am having a lot of trouble with weakness, muscle pain.. I periodically get chills and a fever. Is this normal. I also have pulmonary hypertension and an autoimmune disease-Scleroderma..

Liked by chinasmom

REPLY

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
“Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
– Fever
– Weight loss
– Cough
– Lack of appetite
– Night sweats
– Blood in the sputum (phlegm)
– Loss of energy”

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Liked by chinasmom

Thanks for your response. The overall weakness has been going on for about a month and the muscle weakness is since starting the meds..

Liked by chinasmom

@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
“Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
– Fever
– Weight loss
– Cough
– Lack of appetite
– Night sweats
– Blood in the sputum (phlegm)
– Loss of energy”

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

When I first diagnosed in September 2014, I coughed up blood out of the blue. It was initially suspected as TB. But the sputum tests came back negative for TB. I then had an appointment with a pulmonary specialist who ordered sputum tests for MAC and they came back positive. I have had excess mucus for the past 20+ years. But before being diagnosed with MAC, I was in very good health otherwise. With the diagnosis of MAC, my history of excess mucus came into focus. CT scan suggested that I had bronchiectasis which causes me to be susceptible to MAC. So far I have coughed up blood twice.The first time there was quite a large amount and no other symptoms and the blood stopped in less than 24 hours. I did not take any medication for it and had been symptom-free (other than excess mucus) until last month. I had a cold with low fever and chills on and off for a few days and started seeing some blood in my sputum, although there was much small amount this time around. The pulmonary specialist prescribed antibiotics for 10 days. I again recovered with no systems other than excess mucus. I have not had most of the symptoms that are listed above.

@suzylulu, hello, i hope you are feeling better and I’m glad you found the group. Sometimes just being able to share your story with others who are going through this too is reasuring and comforting. You will find a wealth of information by reading past post, so I encourage you to do that. MAC People put links to good information in their posts that you can click on to read what they have found. Take what you need to help you be more confident in your own MAC journey. You are welcome here so keep coming back!
Becky

@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
“Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
– Fever
– Weight loss
– Cough
– Lack of appetite
– Night sweats
– Blood in the sputum (phlegm)
– Loss of energy”

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

I coughed up blood a few times in early 2014 and was reluctant to tell anyone. I had lots of sinus and respiratory infections throughout the years that in hind sight should have been properly managed or refered to pulmonary. I was give the z pac ( which is azithromicin) everytime but it never seemed to take it all away. I went to the ear, nose, and throat doctor for evaluation for a balloon sinuplasty becuse of repeated infections. I told him about my constant clearing of my throat and coughing up blood. He ordered a chest xray and pulmonary function test. Both test results said to follow up with a CT scan. So my primary care doc ordered the ct scan and she called around to find a pulmonary doc that could see me that day. That pulmonary doc said i had bronchiectasis and would need lots of monitoring for infection and lifelong antibiotic treatment.He
scheduled a bronchoscopy the next day. I went to see him the next week for antibiotcs and 2 inhalers he had samples of. I came back in 2 weeks, then monthly for chest xrays and to monitor my symptoms. I really liked this doc as he truly cared enough to call his patients at home and check on them. He had to leave the country to be with his family in iseral, so who could be mad about that. I did go back to ear, nose and throat for the balloon sinuplasty and would say it helped alot and would highly reccomend it for anyone with sinus problems. I’ve since had a pulmonary doc and a nurse practioner she was better than the doc. at getting medications and nebulizers and a chestwall vibrating vest from hill rom, but they left the practice and the pulmonary doc left behind did not come recommended by anyone. So im seeing a pulmonary doc and an infectious disease student. Im not confident in any of their care. So im reserching and trying to find a doc to handle my bronchiectasis and my mac. Im on the big 3 daily and i take them all at 7 pm. Im having alot of fatigue, feeling drained and i have numbness in my hands and feet and very loud ringing in my ears that makes it hard to concentrate.i did have daily head aches and night sweats but those went way in 2 months. Im also having a rash and occasional hives and chest pain and i can’t get anyone to look into it. It’s so frustrating and tiresome to find good care. I had a great primary care doc for 10 years and she moved to colorado and I just dont like the lady at the practice. I liked going there because all my doctors were in one place with the hospital and lab all in one. Everything there is fareley new and really clean the way it should be! I hope everyone has a good day and keep shareing your stories so we can learn from eachother!!!
Becky

@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
“Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
– Fever
– Weight loss
– Cough
– Lack of appetite
– Night sweats
– Blood in the sputum (phlegm)
– Loss of energy”

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

@chinasmom Becky, it was very interesting reading about your history. Although ours are not quite the same, there are some similarities to make me feel that I can relate to your ordeal. Without proper diagnosis for 20+ years of excess mucus (constant coughing and the urge to clear my throat were driving me and my husband nuts) had led to me eventually coughing up large amount of blood one day. That was the first time I was suggested to see a pulmonary specialist. Before then, my primary physician had tried her hardest to treat me as having post-nasal drip, sinuses, allergies, etc. to no avail. Although I do have allergies for tree pollen, dust mite, etc. and 5-years of allergy shot regimen had made the constant coughing nearly stop, it barely made a dent to the amount of mucus and constant need to clear my throat. It seems odd for me to feel relieve that I know I have bronchiectasis. But it now all makes perfect sense rather than questioning why nothing seemed to help my mucus situation and feeling utterly frustrated. At least I know exactly what I’m dealing now.

@chinasmom and @suzylulu…..Becky, where do you live? Just wondering if anyone could help give you a pulmonary doc recommendation. Just curious, are you the one that had all the problems with your medication when you started and your daughter was helping you out? I hope you get some answers.

@suzylulu…..the only reason I knew I had MAI was because I threw up blood about 4 years ago when we were stationed in Germany. While in Germany they monitored my status through catscans, but nothing that they wanted to act on with medication. (They did not tell me I had bronchiectasis nor MAI…he may not have known what to look for, or maybe I didn’t have it at the time?) Then, I moved a little less than 2 years later and started seeing a St. Louis pulmonologist. He diagnosed me with mild bronchiectasis and probability of MAI. However, I guess my MAI was not active so he did not act with medicine. This past Xmas, my catscan got worse with the MAI and the bronchiectasis, so I took a sputum sample to ensure that I had MAI and started on the meds. I will have now been on all three meds for one month this Thursday. I am lucky that I have really had no symptoms taking the medicine….occasionally a headache which could also be from dehydration too. I get tired at times, but nothing that I can’t usually push through. But, I also will not hesitate to lay down if I need it. Maybe I have taken a nap 3 times in the month. OH….yes, I do have a side effect…a little insomnia. I think the insomnia might be getting a “little” better…I feel I am able to get “enough” sleep to help me feel rested when I wake up.

Liked by chinasmom

Hi all,
You’ll find some MAC doctor recommendations in this discussion thread. Please add yours.
– Good MAC Doctor? http://mayocl.in/2paMbB7

Liked by chinasmom

@colleenyoung

Hi all,
You’ll find some MAC doctor recommendations in this discussion thread. Please add yours.
– Good MAC Doctor? http://mayocl.in/2paMbB7

Jump to this post

Dr. Levanthal at Mayo Clinic in Jacksonville is fantastic.
 

Liked by chinasmom

I live in Rochester MN, part of the year, but I understand that Dr. Aksamite (sp ?) is not taking new patients. Can someone suggest a doctor @ Mayo Clinic in AZ?

Liked by chinasmom

@beatitnow

@chinasmom and @suzylulu…..Becky, where do you live? Just wondering if anyone could help give you a pulmonary doc recommendation. Just curious, are you the one that had all the problems with your medication when you started and your daughter was helping you out? I hope you get some answers.

@suzylulu…..the only reason I knew I had MAI was because I threw up blood about 4 years ago when we were stationed in Germany. While in Germany they monitored my status through catscans, but nothing that they wanted to act on with medication. (They did not tell me I had bronchiectasis nor MAI…he may not have known what to look for, or maybe I didn’t have it at the time?) Then, I moved a little less than 2 years later and started seeing a St. Louis pulmonologist. He diagnosed me with mild bronchiectasis and probability of MAI. However, I guess my MAI was not active so he did not act with medicine. This past Xmas, my catscan got worse with the MAI and the bronchiectasis, so I took a sputum sample to ensure that I had MAI and started on the meds. I will have now been on all three meds for one month this Thursday. I am lucky that I have really had no symptoms taking the medicine….occasionally a headache which could also be from dehydration too. I get tired at times, but nothing that I can’t usually push through. But, I also will not hesitate to lay down if I need it. Maybe I have taken a nap 3 times in the month. OH….yes, I do have a side effect…a little insomnia. I think the insomnia might be getting a “little” better…I feel I am able to get “enough” sleep to help me feel rested when I wake up.

Jump to this post

I also suffer from terrible breathlessness

Liked by chinasmom

@swrtwdml

I live in Rochester MN, part of the year, but I understand that Dr. Aksamite (sp ?) is not taking new patients. Can someone suggest a doctor @ Mayo Clinic in AZ?

Jump to this post

Hello. The Mayo Clinic has very high standards; I feel like they would not
hire just any slouch. I would feel confident that any doctor you saw there would
be top notch. I have seen three at the Mayo in Jacksonville, and hold all of
them in high regard. In a nutshell, I don’t think you can go wrong with anyone
there.
 

Liked by chinasmom

@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
“Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
– Fever
– Weight loss
– Cough
– Lack of appetite
– Night sweats
– Blood in the sputum (phlegm)
– Loss of energy”

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

Its kind of ashame that we get our diagnosis and in hind sight we see we’ ve had these symptoms for awhile. Un treated or under treated our lungs have paid the price. I wish it were different but i dont see things changeing. When you know the truth. You can then arm yourself with really good information and then pass it on. Tell us and your doctors. Thanks for asking questions and telling your story so that i can learn from you!
Becky

@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
“Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
– Fever
– Weight loss
– Cough
– Lack of appetite
– Night sweats
– Blood in the sputum (phlegm)
– Loss of energy”

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

You are right. It is very frustrating. About 2 years ago they found nodules in my lungs and it has taken all this time for a diagnosis. I’ve been on the meds for almost a month. The awful weakness could be MAC treatment or my autoimmune disease-scleroderma.

Liked by ling123

@beatitnow

@chinasmom and @suzylulu…..Becky, where do you live? Just wondering if anyone could help give you a pulmonary doc recommendation. Just curious, are you the one that had all the problems with your medication when you started and your daughter was helping you out? I hope you get some answers.

@suzylulu…..the only reason I knew I had MAI was because I threw up blood about 4 years ago when we were stationed in Germany. While in Germany they monitored my status through catscans, but nothing that they wanted to act on with medication. (They did not tell me I had bronchiectasis nor MAI…he may not have known what to look for, or maybe I didn’t have it at the time?) Then, I moved a little less than 2 years later and started seeing a St. Louis pulmonologist. He diagnosed me with mild bronchiectasis and probability of MAI. However, I guess my MAI was not active so he did not act with medicine. This past Xmas, my catscan got worse with the MAI and the bronchiectasis, so I took a sputum sample to ensure that I had MAI and started on the meds. I will have now been on all three meds for one month this Thursday. I am lucky that I have really had no symptoms taking the medicine….occasionally a headache which could also be from dehydration too. I get tired at times, but nothing that I can’t usually push through. But, I also will not hesitate to lay down if I need it. Maybe I have taken a nap 3 times in the month. OH….yes, I do have a side effect…a little insomnia. I think the insomnia might be getting a “little” better…I feel I am able to get “enough” sleep to help me feel rested when I wake up.

Jump to this post

@beatitnow, hope you are feeling good today. I live in Pevely, Missouri, 30 miles south from st. Louis. So i would love to have your doctor information if you don’t mind. Thanks for the concern, but i think that was carmen who’s mom was really really sick from her meds. But i did try to help her as much we can. I hope they’re doing better. Stay strong!!!
Becky

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