(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@windwalker Thanks Terri, yes I wonder why too. Doesn’t make sense to me why I have this.

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@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@nick52 thanks Nick & Colleen

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@flib

Sorry for so many worries. I have just been diagnosed with neuropathy in my feet. My doctor did a blood workup and called me at home because was concerned with my high B6 level. She called it "alarming." Said to get off all b6 immediately, that high levels kill nuerons…that this may be the cause of the neuropathy. .I had been taking various energy drinks which are loaded with B6. She also said it takes about 8 months to b clear it. I started reading labels. Few people know the danger of over doing vitamins. Wishing you better days.

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@windwalker according to Dr James F. Balch, MD in his book nutritional healing ginseng should not be used by those with hypoglycemia, high blood pressure or heart disorders.  There is Siberian, American and Korean ginseng but the properties  and uses of all

three are generally referred to as ginseng. Be careful with ginseng! Nick

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@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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@suzie2018 I sure hope you have a nutritionist because it is important that your husband has a diet with alkaline forming foods to keep the mucus as low as possible and to give a chance to the antibiotic to do its job.  Chili is made with beans and high in

protein but it is also high in Acid forming (mucus).  Here is a list of Acid forming foods: Alcohol, asparagus, beans, brussels sprouts, catchup, chickpeas, cocoa, coffee, cornstarch, cranberries, eggs, fish flour , flour based product, legumes, lentils, meat,

milk, mustard, noodles, oatmeal, olives, organ meats pasta, pepper, plums, poultry, prunes, sauerkraut, shellfish, soft drinks, sugar, all food with sugar added, tea, vinegar.  To gain weight peanut butter and honey ( honey and maple syrup, molasses are sweet

but are alkaline

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@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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@suzie2017 Chili, sour cream, Texas Toast and Ice cream. This food is is very good but very high on mucus forming.  Check the internet to bake more alkaline food to keep the mucus low.  When you eat a high acid diet you nourish the mucus so it multiplies.  Does

he take probiotic? You may think seriously to give him a high dosage but one without diary product.  You can order some on Dr Ohirra ! You have nothing to loose to try! 

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@flib

Thank you so much. It takes a while to master the vocabulary.

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You're describing my life. I'll brush my teeth, sit down, dress,sit down, Make breakfast, sit down a lot. And then, a day will come along and I feel like I'm 18, my feet moving fast,my hands getting things done, up the stairs, down the stairs and such a jolly feeling inside. How much we value the things we lose.

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@flib

Sorry for so many worries. I have just been diagnosed with neuropathy in my feet. My doctor did a blood workup and called me at home because was concerned with my high B6 level. She called it "alarming." Said to get off all b6 immediately, that high levels kill nuerons…that this may be the cause of the neuropathy. .I had been taking various energy drinks which are loaded with B6. She also said it takes about 8 months to b clear it. I started reading labels. Few people know the danger of over doing vitamins. Wishing you better days.

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Also, for those with kidney disorders, it could affect potassium and phosphorus levels.

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@flib

Sorry for so many worries. I have just been diagnosed with neuropathy in my feet. My doctor did a blood workup and called me at home because was concerned with my high B6 level. She called it "alarming." Said to get off all b6 immediately, that high levels kill nuerons…that this may be the cause of the neuropathy. .I had been taking various energy drinks which are loaded with B6. She also said it takes about 8 months to b clear it. I started reading labels. Few people know the danger of over doing vitamins. Wishing you better days.

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@nick52 Thank you. That is why I had mentioned running it by your pysician first. It is a stimulant folks. If you have heart issues, be very careful.

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@flib

Thank you so much. It takes a while to master the vocabulary.

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@flib Ha! That is exactly how it is! My husband laughs at me because I do a little bit here, and do a little bit there. But, hey, I eventually get the job done! Then, like you said; there are those days where you fly around the house like an 18 yr old.

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@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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Thank you Nick for your suggestions. We will be seeing my husband’s Pulmonologist tomorrow and I will talk to him about a nutritionist. I am capable of searching the internet but I agree a Nutritionist would be the best to design a weekly menu for us.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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That is a very sad story. Any type of dementia is a terrible disease and as you know, very difficult on the family. I think it is sad for older people but it is a real tragedy for younger people.

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@flib

Sorry for so many worries. I have just been diagnosed with neuropathy in my feet. My doctor did a blood workup and called me at home because was concerned with my high B6 level. She called it "alarming." Said to get off all b6 immediately, that high levels kill nuerons…that this may be the cause of the neuropathy. .I had been taking various energy drinks which are loaded with B6. She also said it takes about 8 months to b clear it. I started reading labels. Few people know the danger of over doing vitamins. Wishing you better days.

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@joan912 i also check a book received from a Pharmacist On contraindications if using  if you have different disease.  In the Ginseng section  it doesn’t talk about kidney as a contraindication .  It says  you should not use it if you have : hypertension, and

cardiac problem, diabetes, Asthma, 7 days before surgery, nose bleeding or  menstruations (over bleeding) pre-menopause with hormones cycles. I agree that a person must be careful using ginseng because of some Asthma is related to lung.  Be careful!  I would

says always check with your doctor but doctors do not study medications it is a pharmacist who is the expert and herbal medication is studied by naturopath.  Trust the right expert in medication. Nick 52

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@flib

Sorry for so many worries. I have just been diagnosed with neuropathy in my feet. My doctor did a blood workup and called me at home because was concerned with my high B6 level. She called it "alarming." Said to get off all b6 immediately, that high levels kill nuerons…that this may be the cause of the neuropathy. .I had been taking various energy drinks which are loaded with B6. She also said it takes about 8 months to b clear it. I started reading labels. Few people know the danger of over doing vitamins. Wishing you better days.

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@nick52 and everyone. The Chinese have been using this root for thousands of years to treat a variety of illnesses. You can Google 'ginsing' and learn more about it. I like to use trusted sources like NIH.gov, Mayo Clinic, and University of Arizona Medical. One should always research any suggested remedies that they see posted here before trying them.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@tutti, hope you are doing ok like most of us just hanging out in the background of this sight and soaking up the information when we can. I have been on disability and medicare for 14 years. I had a back injury while doing private duty nursing trying to help a patient get out of bed. I had a failed back surgery after trying everything else. I tried different nursing jobs but could not continue working and taking medication. I was denied disability the first time and appealed on my own and was approved the second time around. I have heard they almost always say no the first try so keep appealing until you are get your benefits. MedIcare is a benefit that come along with my disability so if you are not getting it you should contact your social security office. They deduct the premiums from my checks. It's a secondary insurance to my husbands for me. I have treatment resistant deppression, anxiety and had a hard time concentrating and finding my words sometimes. I sought many opinions from many specialist and was taking mother with me to many of my appointments. A neurologist notice symptoms of Huntingtons chorea in my mother at my visit. We both were tested and have the defective gene and will develop debilitating symptoms as our brain cells die. Recently I had a knee and foot injury just doing chores at home i started loosing my balance and tripping over my own feet. My physical therapist is helping me and my walker is a necessity now. I love everyone in this community . Im trying to keep up to date on this sight but its very hard and sometimes i have to force myself to delete messages. I saved some messages for reviewing at a later date. I hope everyone's memorial day was a good one. If you cannot work you should get disability and Medicare through the social security office that you have already paid for. Take care and stay strong!
Becky

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@chinasmom Hi Becky! Thank you for posting. That is generous of you considering weight of your own troubles. I am bummed to learn that you & your mom have the Huntington chorea gene. I hope it doesn't progress to a point that it is debilitating for you. Stay safe and be careful! I just read that you are falling into walls etc.

Liked by chinasmom

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