Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- 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 - 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
@yayaaz I’m know I’m not doing this correctly, but I have a question. My 89 year old aunt was only able to tolerate the “Big 3” for a few days as she was having horrible side effects. She has a cough that won’t go away. She has a nebulizer that doesn’t seem to be working, neither is the inhaler. What can you recommend for the cough? The pulmonologist thinks the “vest” might work. We aren’t sure she’ll qualify for it though.
Thank you and I’ll do my best to navigate this site correctly,
Renee
I have been on the big 3 for 3 months now. Because I have a doctor who is into preventive medicine – apart from my lung doctor, she stopped my cough last August within three days with supplements only she can get as a doctor. Find a doctor who is into preventive medicine – my blood tests show no damage to my organs. My lung specialist does not particularly approve or disapprove, and probably mentally pats me on the head. However my doctor on the Gold Coast is right on the ball. I coughed violently for 8 months, stopped within three days of seeing her, and have barely coughed since. I am tolerating the big three surprisingly well, and on the other days taking Dr. Elen's supplements. She gets them from New Zealand. By the way I am on the Gold Coast in Queensland Australia.
Liked by Terri Martin., Volunteer Mentor, anniepie
heathert
@heathert
@heathert
Posts: 515
Joined: Mar 07, 2016
@pfists @windwalker
@heathert
@spencersok
@jkiemen
This is the email I received from the CEO of Vast Therapeutics a few days ago.
Sounds like its going to be in clinical trials next year if all goes well.
Fingers crossed!
Shari
I appreciate you reaching out to us.
As you already understand, we are a preclinical drug company. Our clinical studies will not be for some time (more than a year away).
Further, our clinical study will be for Pseudomonas aeruginosa infections in Cystic Fibrosis patients. So I’m not sure you would qualify.
I wish you the best of luck and we will continue working hard!
John Oakley
Chief Financial Officer
Know Bio LLC / Vast Therapeutics, Inc.
@pfists Fingers crossed all right, heres hoping, just wish it diddnt take so long.
sounder27
@sounder27
@sounder27
Posts: 78
Joined: Jan 11, 2019
@windwalker @sounder27 @lindam272, ans all. BEWARE stem cell therapy. It is a scam. I confered with pulmonology dept ar Mayo. They said that technology is "not there yet. It will be in the future, but it is 'not there yet'." There IS a reason that insurance doesn't cover it. I have read many conversations in the 'Lung Health' group where patients paid between $9,000 – $16,000 out of pocket to get stem cell therapy for their lungs with zero results. Most of the patients that posted this have idiopathic fibrosis and become very desparate. Mayo Clinic in Jacksonville has a new building under construction specifically for lung rejuvenation research & lab. This lab will refurbish donated lungs to make them viable for transplant. The reseach will include reproduction of lung tissue using t-cells. These are only several great things they will be doing in the field of pulmonology.
To windwalker. Thanks for the update and how encouraging that research is being done at Mayo with hope for the future!
Liked by Terri Martin., Volunteer Mentor
Jane S. Brown
@macjane
@macjane
Posts: 194
Joined: May 12, 2017
migizii
@migizii
@migizii
Posts: 80
Joined: Oct 21, 2018
@yayaaz I’m know I’m not doing this correctly, but I have a question. My 89 year old aunt was only able to tolerate the “Big 3” for a few days as she was having horrible side effects. She has a cough that won’t go away. She has a nebulizer that doesn’t seem to be working, neither is the inhaler. What can you recommend for the cough? The pulmonologist thinks the “vest” might work. We aren’t sure she’ll qualify for it though.
Thank you and I’ll do my best to navigate this site correctly,
Renee
@migizii. My pulmonologist recently prescribed “the vest” for me too as I have difficulty removing mucus. I am not quite old enough for Medicare so I don’t know if your aunt will qualify, but I went through RespirTech in St Paul, MN and they were very helpful navigating everything! Their phone number is 1-800-793-1261. I got this company recommendation from Mayo Clinic in Rochester, MN. I do not know what areas they work with around the country, tho.. good luck in your journey.
nannette
@nannette
@nannette
Posts: 53
Joined: Apr 26, 2016
@bevmac I have been on the big 3 for 3 months now. Because I have a doctor who is into preventive medicine – apart from my lung doctor, she stopped my cough last August within three days with supplements only she can get as a doctor. Find a doctor who is into preventive medicine – my blood tests show no damage to my organs. My lung specialist does not particularly approve or disapprove, and probably mentally pats me on the head. However my doctor on the Gold Coast is right on the ball. I coughed violently for 8 months, stopped within three days of seeing her, and have barely coughed since. I am tolerating the big three surprisingly well, and on the other days taking Dr. Elen's supplements. She gets them from New Zealand. By the way I am on the Gold Coast in Queensland Australia.
@bevmac I've been coughing for a year and a half now. Do you know the names of those supplements that your doctor gave you that stopped your cough after three days? I haven't had any luck yet stopping mine. Nan (@nannette)
janovr
@janovr
@janovr
Posts: 96
Joined: Feb 12, 2016
@yayaaz I’m know I’m not doing this correctly, but I have a question. My 89 year old aunt was only able to tolerate the “Big 3” for a few days as she was having horrible side effects. She has a cough that won’t go away. She has a nebulizer that doesn’t seem to be working, neither is the inhaler. What can you recommend for the cough? The pulmonologist thinks the “vest” might work. We aren’t sure she’ll qualify for it though.
Thank you and I’ll do my best to navigate this site correctly,
Renee
@yayaaz bless you! I could not tolerate the meds. I ordered Broncolin/Propolis all natural honey cough syrup from Amazon. Also
Order Blue Label Clear Lung from Amazon. It stopped my cough. Both are ALL NATURAL !
Do it !
Liked by Terri Martin., Volunteer Mentor
Nannette – 300 mls celery juice – freshly squeezed -30 minutes before food in the morning, SAMe200 (Klaire Lab) – SFI USA Reo NV89521),BicoZn (BioMedica brand), Ultra Flora SB Dysbiosis Control – (Metagenics). I go back every 3 months, my complementary medicine doctor also gets a copy of the blood tests I have monthly. My complementary medicine doctor – also a surgeon is Dr. Elen Apthomas – The Medical Sanctuary – Ashmore Queensland – you will find the Medical Sanctuary online. I had a weird eye thing this morning and looked it up on the net and will contact my lung specialist on Monday – the net suggested it was Kaleidoscopic vision – so maybe a visit to the eye specialist fairly quickly. It has passed within a few hours. 3 months on big three and Dr. Elen changed me to celery juice 40%, beetroot juice 30%, carrot 20 %, lemon 10% – 30 minutes before food in the morning. I take the supplements on days I am not on the big three.
Liked by nannette, Terri Martin., Volunteer Mentor
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3510
Joined: Nov 18, 2016
@america Hi windwalker and all! This is interesting because IPF reminds me of NTM! I never heard of this disease until I got it! Well in 2002 it was the very first time I heard about IPF. That’s when my late husband of 29 years was diagnosed IPF. We lived in NY at the time and I tried to get him the best doctors in NY. But he did not get a transplant and he died 18 months later in 2004. I hope and pray that this will be available soon and people could get some help. He was only 54.:) life goes on! Rita.
@america, Oh, Rita, that is very sad. Do you know if his IPF was congenita,l or was he exposed to something on the job? That must have been extremely hard for you to watch him struggle towards the end of his disease process.
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3510
Joined: Nov 18, 2016
@auntnanny yayaaz —– I have a lady friend who is with National Jewish in Denver. Almost every month she goes for a bronchoscopy and says it really clears things out. I'm with Mayo's in Rochester and I've never had one but I was just thinking you might want to ask about this for you aunt. I'm not medically qualified to answer anything but I know what she does. She's had this for many years.
@auntnanny Hi Jan. How are you doing these days? Are you feeling alright? I too know a woman who went in for regular bronchioscope washings and got better. That reminds me, I need to touch base with her and see of she is still having continued success from that.
Liked by pfists
america
@america
@america
Posts: 128
Joined: Jun 26, 2018
@windwalker @america, Oh, Rita, that is very sad. Do you know if his IPF was congenita,l or was he exposed to something on the job? That must have been extremely hard for you to watch him struggle towards the end of his disease process.
Hi Terri! Thanks it was very sad. He lives in our hearts forever. They did a biopsy and said it was idiopathic and and don’t know how he got it. He never smoked so I’m not sure how things just happened. I wish we had more options for IPF and NTM. But for now there’s hope. I hope you’re having some fabulous days. I have had a few not so good days but I am getting back on track. Hugs.
nannette
@nannette
@nannette
Posts: 53
Joined: Apr 26, 2016
@bevmac Nannette – 300 mls celery juice – freshly squeezed -30 minutes before food in the morning, SAMe200 (Klaire Lab) – SFI USA Reo NV89521),BicoZn (BioMedica brand), Ultra Flora SB Dysbiosis Control – (Metagenics). I go back every 3 months, my complementary medicine doctor also gets a copy of the blood tests I have monthly. My complementary medicine doctor – also a surgeon is Dr. Elen Apthomas – The Medical Sanctuary – Ashmore Queensland – you will find the Medical Sanctuary online. I had a weird eye thing this morning and looked it up on the net and will contact my lung specialist on Monday – the net suggested it was Kaleidoscopic vision – so maybe a visit to the eye specialist fairly quickly. It has passed within a few hours. 3 months on big three and Dr. Elen changed me to celery juice 40%, beetroot juice 30%, carrot 20 %, lemon 10% – 30 minutes before food in the morning. I take the supplements on days I am not on the big three.
@bevmac Thank you so much!!! I've had two doctors and neither one of them have had any luck with my cough so I'm going to try your doctor's supplements and see what happens! Nan (@nannette)
Liked by Terri Martin., Volunteer Mentor
auntnanny
@auntnanny
@auntnanny
Posts: 211
Joined: Oct 18, 2016
@windwalker @auntnanny Hi Jan. How are you doing these days? Are you feeling alright? I too know a woman who went in for regular bronchioscope washings and got better. That reminds me, I need to touch base with her and see of she is still having continued success from that.
windwalker — thank you for asking. I a, trying to do 30 days of toby right now. Just finished my second week. First attempt was not great — I had trouble breathing and came off in 3 weeks. Waited about a month and want desperately to make it work. So, I'm trying again. There is some MAC in my sputum testing and Mayo doctor says if we can't stop some of the cough and phlegm with toby I may need to do the dreaded course of 3 antibiotics. I'm trying……. I've lost a little weight and feel weak but at 78 years I assume I won't feel like a teenager. Incidentally, for other's info also, I got my first month's supply of toby at the Mayo pharmacy and they told me they were able to put it through on my Medicare B. It was cost-free to me. This time, I asked doctor to send script to my closer pharmacy — Walgreens — and they said they could not get it on Medicare B and they wanted 1100 dollars for a month's supply. I went back to Mayo Pharmacy and they sent it in cost free again. Don't know I this might help anyone but thought I would share the story. I'm happy to answer any questions I can if I can be of help to anyone. I'll be interested in whether your friend is still doing the bronchoscopies (sp).
Liked by america
spencersok
@spencersok
@spencersok
Posts: 22
Joined: Nov 22, 2018
@bevmac I have been on the big 3 for 3 months now. Because I have a doctor who is into preventive medicine – apart from my lung doctor, she stopped my cough last August within three days with supplements only she can get as a doctor. Find a doctor who is into preventive medicine – my blood tests show no damage to my organs. My lung specialist does not particularly approve or disapprove, and probably mentally pats me on the head. However my doctor on the Gold Coast is right on the ball. I coughed violently for 8 months, stopped within three days of seeing her, and have barely coughed since. I am tolerating the big three surprisingly well, and on the other days taking Dr. Elen's supplements. She gets them from New Zealand. By the way I am on the Gold Coast in Queensland Australia.
@bevmac Should would like to know what type of treatment your doctor provided for the cough. My wife coughs terribly until her stomach and side hurt. Cost of the medication is not a problem for us. Thanks for any information your doctor can provide.
Liked by janovr
@yayaaz
In reply to @auntnanny
Thank you so much.