Extreme fatigue with MAC

Posted by src3acs @src3acs, Feb 26, 2018

Good Morning, I am new here so this may have been discussed before. I was diagnosed with MAC in 2012 after I was diagnosed with breast cancer. I had a biopsy and lung wedge resection…both confirmed the MAC. In 2015 I had a bronchoscope done which again confirmed the MAC and bronchiectasis. I have seen a Pulmonologist, infectious disease and my primary care doctor. Everyone seems up in the air whether to treat or not. They seem to be leaving the decision up to me. I don’t have a cough, I do have some shortness of breath occasionally but I am always tired. No matter how much I rest or sleep…..I am tired and sometimes exhausted after minor activity. Is fatigue a main symptom of the disease. Would treatment help my fatigue or make is worse. Thank you!

@alleycatkate

@windwalker If you are researching Dr's in S. Florida, I would really love a recommendation. W. Palm…Stuart, anywhere from Melbourne Beach going South if you come across a good one. . I am in Vero Beach and am in need of a new Dr. for MAC Thank you. I am seeing my GP this week to see if she will prescribe the nebulizer and 7% sodium Chloride so I can get going on that.

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Any support groups in SE Michigan? Thanks

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@soflo

@windwalker Hey Terri, I went to see my GP today and he supported my decision and stop being the big 3 after two weeks. He thinks we should wait right now for a nebulizer because he feels I’m not symptomatic? And he does not want me to inhale anything at this time and that he wants to discuss it again after I see my pulmonologist. Forgive me because I’m not sure if I am using correct medical terms. I’m going to see my Pulmonologist and my ID in two weeks and will discuss the saline nebulizer and if I should go on a lighter treatment. Thank you for the info about the nodules. I guess that’s good news? I’m confused because I’m not sure what symptoms I need to be on top of. My GP wants to monitor me to see if I start getting worse symptoms and wants to wait and see what my Pulmonologist says after my next visit before he reconsider a lighter treatment. So I guess I will wait to see what the pulmonologist says in two weeks. Thanks Dee

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@soflo Please read this all of the way through. NIH is a super reliable source for info.This may help you with your treatment decision. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4749270/ click on this link to open.

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@alleycatkate hi Kathy thanks for your response. I too felt as if I was hit by a truck when I received the news and I also do not trust many doctors. That’s why I am so happy I found this site. Can I ask you why you have decided to nebulize and your doctor said not to? I mentioned it to my GP and he said not to do anything yet. I just don’t want to be sitting around if I should be doing something. May I ask you how you supplement? I would love to start taking something natural for my immune system and for my lungs. This is new for me as well and I just have so many questions that is why I get confused and I don’t know what advice to listen to sometimes. Do you think at some point you may want to go to a Mac center like Mayo. Im waiting to see if Terri on this site can recommend doctor closer to me. I wish you great health as well. Please stay in touch I would love to know what you decide on doing moving forward. Hugs Dee

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@alleycatkate I think we have all been there, being told we have a life changing health issue then being told not to do anything. How can that be. We of course want to do something to help ourselves. Personally, I wish that I started the treatment earlier before the bacteria increased. I tried antioxidants the Bidens and Corelepsis that one of our members used but I did end up starting treatment. I got a second opinion and got the impression they may have continued to wait a bit. But nonetheless, I started treatment with the "Big 3" and I think stopping early could lead to resistance, so I would like to stick it out as long as I can. One MD told me the best thing for your immune system is to make sure your Vitamin D level is normal and supplement that. You should ask to have your Immune system tested, blood test.

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@jkiemen Hi there. How are you feeling and doing with the big 3? Do you mind if I ask what your symptoms were/are? I feel overwhelmed at times and not sure how to proceed at this time. Thankyou for the info about vit D. Mine is low and will stat my supplement again. 🙂

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@soflo I found out I had MAC after a sudden pneumonia. I had always been healthy, exercised 4 miles a day never sick. Then the pneumonia. Bronchoscopy was done returned with MAC. Follow-up Chest XRays showed nodules. I did not have any symptoms initially other than the sensation of increase in mucus in my throat on occasion. I have follow up CT's to watch the progress. Again not really many symptoms, I had occasional dry cough. One time I coughed up a small amount of blood. This November, my CT showed changes and then I was started. I could not take Rifabutin due to severe aching and switched to Rifampin. I have stomach ache more often than the beginning of treatment and fatigue. I lost about 5-6 pounds. I keep trying to eat. I still don't have much of a cough but still have the sensation of mucus in my throat that is seeming like it is more in the upper throat like post nasal drip. I take a probiotic and vitamins including D3. I am on Month 7 of treatment. My last sputum cultures were negative but I am not sure they were great samples because I can't get much up because the cough is dry. Sputum inductions with concentrated saline didn't work and they suspected there was not much there to get out.

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@soflo

@windwalker Hey Terri, I went to see my GP today and he supported my decision and stop being the big 3 after two weeks. He thinks we should wait right now for a nebulizer because he feels I’m not symptomatic? And he does not want me to inhale anything at this time and that he wants to discuss it again after I see my pulmonologist. Forgive me because I’m not sure if I am using correct medical terms. I’m going to see my Pulmonologist and my ID in two weeks and will discuss the saline nebulizer and if I should go on a lighter treatment. Thank you for the info about the nodules. I guess that’s good news? I’m confused because I’m not sure what symptoms I need to be on top of. My GP wants to monitor me to see if I start getting worse symptoms and wants to wait and see what my Pulmonologist says after my next visit before he reconsider a lighter treatment. So I guess I will wait to see what the pulmonologist says in two weeks. Thanks Dee

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@soflo, just meed to have ct scans on a regular basis to watch for lung tissue destruction. They need to monitor for any changes.

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@soflo

@alleycatkate hi Kathy thanks for your response. I too felt as if I was hit by a truck when I received the news and I also do not trust many doctors. That’s why I am so happy I found this site. Can I ask you why you have decided to nebulize and your doctor said not to? I mentioned it to my GP and he said not to do anything yet. I just don’t want to be sitting around if I should be doing something. May I ask you how you supplement? I would love to start taking something natural for my immune system and for my lungs. This is new for me as well and I just have so many questions that is why I get confused and I don’t know what advice to listen to sometimes. Do you think at some point you may want to go to a Mac center like Mayo. Im waiting to see if Terri on this site can recommend doctor closer to me. I wish you great health as well. Please stay in touch I would love to know what you decide on doing moving forward. Hugs Dee

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@soflo, I honestly thinl you should bite the bullet and make the drive to Mayo and see Dr. Leventhal. I will still poke around your area for a dr closer to you. This is a serious illness and it takes an expert to treat it. Mayo is a much smoother and less expensive experience than going to a private practice dr. At Mayo, all tests are done in the same day and all results are back by the end of that day. Then you meet with your dr at the end of the day and discuss results and a treatment plan. In private practice tests are book on various days resulting in many trips out for appointments. You wait weeks for results…..you know what I am saying.

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@jkiemen

@alleycatkate I think we have all been there, being told we have a life changing health issue then being told not to do anything. How can that be. We of course want to do something to help ourselves. Personally, I wish that I started the treatment earlier before the bacteria increased. I tried antioxidants the Bidens and Corelepsis that one of our members used but I did end up starting treatment. I got a second opinion and got the impression they may have continued to wait a bit. But nonetheless, I started treatment with the "Big 3" and I think stopping early could lead to resistance, so I would like to stick it out as long as I can. One MD told me the best thing for your immune system is to make sure your Vitamin D level is normal and supplement that. You should ask to have your Immune system tested, blood test.

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@jkiemen Hello!! Thanks for that very good information. Beefing up the immune system is very smart and I will get that in my next bloodwork. I do take D3K2 as a supplement..might need more. I'll look into it. I wish you good health and good luck. Thank you for your kindness and your thoughts!

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@soflo

@alleycatkate hi Kathy thanks for your response. I too felt as if I was hit by a truck when I received the news and I also do not trust many doctors. That’s why I am so happy I found this site. Can I ask you why you have decided to nebulize and your doctor said not to? I mentioned it to my GP and he said not to do anything yet. I just don’t want to be sitting around if I should be doing something. May I ask you how you supplement? I would love to start taking something natural for my immune system and for my lungs. This is new for me as well and I just have so many questions that is why I get confused and I don’t know what advice to listen to sometimes. Do you think at some point you may want to go to a Mac center like Mayo. Im waiting to see if Terri on this site can recommend doctor closer to me. I wish you great health as well. Please stay in touch I would love to know what you decide on doing moving forward. Hugs Dee

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@soflo …I decided that I liked Terri's Dr., Dr Levanthal's approach of making a hostile environment for the MAC with saline.(like salt miners that usually do not get lung issues) It seems smart even though my pulmonologist said no moisture/nebulizing. (it is pehaps the only thing he said to me) There seems to be many opinions and approaches to this disease…and I think in the end you need a good Dr and your common sense. Yes…I am thinking of going to Mayo if there is no Dr that is terrific in our neck of the woods. Quite frankly, from what I hear from Terri, Dr. Levanthal is my ideal. I am currently taking Astragalus to boost the immune system…d3k2, NAC for my lungs, my list goes on but it is for other things…Just did start taking SAMe for my attitude and feel so much better about approaching this stuff…truly a different mindset. Also have added Echenacea and Zinc that supports the immune system…and both supposedly will help cut a cold 's time down by half. (?) Also started back to the gym for a cardio workout regularly. I want to get well!! I have ordered Clear Lung (blue) by Ridgecrest as many on the Mayo site recommend it. Not sure if all this is right for you but read up on it to see what you think. My husband brought home a cold to me and I am now taking an expectorant, Guaifensin, that loosens mucus and rids chest congestion. Hey maybe we could journey north to Mayo together which would be great…I have to look into my insurance as I have an awful HMO to see what it takes to get out of network Dr's. Oh…I went to my GP today…told her of my pulmonoligist's comment not to nebulize then told her about this site and the recommended nebulizing from Mayo and she prescribed my nebulizer and the saline. Love my GP!! I think you said you were asymptomatic…??? Good for you. Me too and hope we can stay that way. Please don't fret…I think it becomes easier to cope with when we have good information. And good support which is HERE!!

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@soflo

@alleycatkate hi Kathy thanks for your response. I too felt as if I was hit by a truck when I received the news and I also do not trust many doctors. That’s why I am so happy I found this site. Can I ask you why you have decided to nebulize and your doctor said not to? I mentioned it to my GP and he said not to do anything yet. I just don’t want to be sitting around if I should be doing something. May I ask you how you supplement? I would love to start taking something natural for my immune system and for my lungs. This is new for me as well and I just have so many questions that is why I get confused and I don’t know what advice to listen to sometimes. Do you think at some point you may want to go to a Mac center like Mayo. Im waiting to see if Terri on this site can recommend doctor closer to me. I wish you great health as well. Please stay in touch I would love to know what you decide on doing moving forward. Hugs Dee

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@soflo I  am not so sure about moisture/nebulizer if your doctor didn’t recommend it. Some people on this discussion site have more than bronchiectasis and MAC. The MAC is not necessary the cause for coughing blood it can be the bronchiectasis the cause. Those

who has COPD may need it more.  As I said one good thing to do with any infectious disease is probiotic to get more good bacteria to fight the bad one.  What is good for one person may not be good for another one.  Good luck in making wise choices. Nick

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@soflo

@alleycatkate hi Kathy thanks for your response. I too felt as if I was hit by a truck when I received the news and I also do not trust many doctors. That’s why I am so happy I found this site. Can I ask you why you have decided to nebulize and your doctor said not to? I mentioned it to my GP and he said not to do anything yet. I just don’t want to be sitting around if I should be doing something. May I ask you how you supplement? I would love to start taking something natural for my immune system and for my lungs. This is new for me as well and I just have so many questions that is why I get confused and I don’t know what advice to listen to sometimes. Do you think at some point you may want to go to a Mac center like Mayo. Im waiting to see if Terri on this site can recommend doctor closer to me. I wish you great health as well. Please stay in touch I would love to know what you decide on doing moving forward. Hugs Dee

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@alleycatkate Good morning! I am glad that you got your nebulizer and saline. If it is too harsh for you at first, approach it slower. Just do the amount that you can tolerate. Eventually, you get totally used to it. It is supposed to make you cough so that you bring up phlegm. I got used to it and no longer cough from it, but, I know that it is still doing it's job by thinning the mucous. (Mac likes thick mucous to colonize on) Your text indicates that you are on the right track in taking care of yourself and I love your attitude. Stay strong!

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