(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Finished 6 days of it today -- 8 more to go. I hope it's working.......

Kay strand and Windwalker please phrase the question to take to Workshop at NJH

@windwalker
Licorice can be deglicerized it's the glicerine that's the problem. It's Also called "dgc licorice" for deglicerized. It wont cause with blood pressure problem if that part is removed.
No need to worry it's not in candy licorice.. I don't believe there is any in it anymore except for the real old fashion kind.
I have heard a lot about herbal licorice also for lungs. Im considering the clear lungs also if it doesn't cause the side effects you mentioned.
I bought a book called Herbal Antibiotcs by Stephen Bruhner. He had a part in the book about treating Mycobacteriums and all the bacteria's us people with brochiectasis have trouble with. I also have been using some of the herbs he recommends with no side effects. I told my Dr I was going to try them also ...I figured at this point I haven't much to lose. I started slow with just a few drops and have been working up. I can't say if it's working or not either because Im not taking near the amount he has recommended. But many lymes patients have used these herbs with success. Very interesting!
He also explains how antibiotics are really losing ground and are becoming more ineffective because bacteria are becoming more resistant. Im not recommending you stop you antibiotics... but it's good to know.
Anyway I think licorice sounds like something to add on to my arsonal. The Dr in the book wrote whole a whole chapter on licorice.
I will find our more and share later.
Shari

@windwalker, so yum!

Hi, my name is Gayle. I was recently diagnosed with Mycobacterium but am holding back on taking the antibiotics until I get more information. I have searched many hours to find one thing that puzzles me in some articles: Just because the germ is present doesn't always mean one is infected. I do not have any of symptoms. True, they say a culture and CT scan indicate I do. I had pneumonia back in April and they told me I do, but I plan to see another physician because the statement I mentioned earlier about having the germ but not necessarily be infected sticks with me. I am 73 and feel fine after I recovered from pneumonia. I do agree that I have had pneumonia many times in my life and get it easily even though I have had the shot. I appreciate this website and find all of you helpful and friendly. I look forward to staying in touch with you.

I think if you present worsening symptoms or deteriorating radiologic scans you would be treated. The nodular variety progresses more slowly than the cavitory type, but a worsening clinical picture for either would warrant treatment.

lklopetro....Is the medical facility/doctor you got the input from re your mycobacterium one that
-has a lab qualified to do the 3 sputum specimens needed for NTM confirmation......the final answer should be after 6-8 weeks of time.
-CAT scan of chest read by Radiologist who is highly trained in reading Chest Cat scans...best certified in it.
-same with ID or Pulmonologist.....that they see at least 12 clients a year who have NTM infections..
you are smart not to jump into taking the meds....locally here in Wisconsin a year ago...the ID was after meeting me for two seconds began writing out the prescriptions for the big 3 meds...l stopped her saying l was going to NJH in a few months. Where it tuns out they said although one culture from Wisconsin grew the MAC others did not and the Chest Cat scan done there did NOT show active infection or bronchiestasis....and that my GERD was causing me to aspirate stomach secretions which had the tap water hence NTM into my lungs . So my treatment is geared to controling the GERD and the aspiration. tdrell

Hi Cindy, Thank you for your point of view on taking the antibiotics. I agree with you about the problems they cause. I have searched many Mac chats and have not found one person who has overcome MAC after all their years of misery on therapy. Some say they were for a short time and it returned. Some doctors have even told their patients to stop taking them. I read an interesting article from the Journal of Thoracic Disease that said many times that just because the germ is present in the culture and on the person doesn't always equate with active infection dated December 12, 2013 I am checking with other doctors before I begin the treatment. Everyone here seems so encouraging and helpful and I'm glad I found the group.

Hello @dixer - I've written before on here, and my husband would like a second opinion, preferably flying to the Mayo Clinic or to NJH. I've contacted both (though I contacted Mayo in Phoenix - it may make more sense to go to Rochester?). I'm waiting for NJH to call back to set up a conference with the nurse. Based on the result of the conference, they will decide if it makes sense to set up an actual appointment, which, I was told, will take 6 weeks. The benefit of NJH is that there is no up-front cost until after the conference. Mayo said it would cost $650 (non-refundable), plus extra costs for any other treatment. I do not know how long it will take to get an appointment with them. My guess is that the cost will be about the same for both places, but the important thing is that my husband can be seen by someone who has extensive history with NTM and bronchiectasis. I do not believe that the physicians at Kaiser do have this experience.
For NJH, who would you recommend? I see that there's a Dr. Dailey who appears to be the head of the dept. For Mayo Rochester or Arizona, who would members recommend? I saw a Dr. Akamit (sp) at Rochester seemed to be the expert there.

dixer I went to NJH....both Mayo's and NJH are specialists in NTM.....
I went to Mayo's in Rochester for other things over the years last going 14 years ago....
I was comfortable and asked for Dr Gwen Huitt at NJH...she like Dr Daley are infectious Disease specialists....they all work with a team of NTM specialists....who after nurse gets information from you...think of phone interview ,...takes over an hour...no cost...then send records when they tell you to...then those are reviewed...then they call to set up appt.....
Payment there seems secondary to getting clients care....all care was free from their beginning in 1899 to 1968.
I have traditional medicare and an excellent suipplement....and paid nothing for my care for 7 days of testing.and appts.
if you decide to go to NJH and want to choose a DR...watch the videos on Youtube from the NTM conferences in 2015 and 2016 from workshops for clients with NTM given at NJH....you will see the doctors present and see which ones seem to be your "type"
also...consider possibility of attending this years workshop all day Saturday October 21st.... although after a few months those programs will be posted no doubt.
one other advantage to NJH...there are alot of planes going there...whereas l doubt that for Rochester.....
if you are driving...then you have more flexibility. tdrell