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MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Replies to "Dear Katherine and all, I have a question. I saw on the Jewish Conference videos that..."
David, I've had a tough day so didn't read the whole thing .. but you might take a look at .. a good reputable website! Also, BEANS to your Pulmonologist! What is why I always tell all of you to DO YOUR DUE DILIGENCE!! Educate yourself .. print things out .. take the print out to your doctor/pulmonologist .. unfortunately we sometimes have to educate them to get our best care .. OR get a more knowledgeable doctor .. one who knows our disease!! Sorry .. I'm tired tonight and can't believe a Pulmonologist would tell you that .. thank heavens you found our Forum and are smart enough to do your Due Diligence! Good for you! Hugs to you! Katherine
Nontuberculous mycobacterial pulmonary infections
https://www.ncbi.nlm.nih.gov › NCBI › Literature › PubMed Central (PMC)
by MM Johnson - 2014 - Cited by 69 - Related articles
Currently, there are more than 150 species of Mycobacterium and it is likely that more ... complex (MAC), a slow growing NTM that encompasses many subspecies .... right middle lobe due to mycobacterium avium intracellulare (MAI) infection.
david 1952 listen to the microbiologist again. on the videos.....l think he said there were as of july now 171 species under NTM....Mycobacterium Avian complex is the MAC...the most common...but then there are the others such as abcessis.sp..l don't have them memorized....ask for a copy of the c culture from sputum or bronchial washing report...that should identify the type.
MAC is most common tdrell
I fired my pulmo b/c he did not complete the process w/materials from bronchoscopy and find out which strain I have therefore which meds best for it... I was quite disappointed when I learned he hadn't done that - now have a pulmo who knows better... ensure your doc has run that final test for the strain and the best med for it...
Hi Jill, I know that when I see my reports from Mayo Clinic from my sputum cultures .. sometimes they refer to a MAC .. but when I have been treated with antibiotics .. it always refers to "colonies". So I have felt personally that the MAC doesn't go away .. that is why I have been "stable" since May 2014 .. checked frequently .. just to make sure they don't "colonize". This would be a good question for one of us to ask our doctor! I am seeing Dr. Aksamit soon .. I'll TRY to remember to ask him! Hugs! Katherine
Katie I read a lot on this website about MAC and hope I don't have or ever will have this disease but it is scary to think I could! The info you give so many people is excellent to do your own research, hand deliver and keep copies for yourself of your test and doctor visits. I'm 72 but have had numerous medical issues since my 20's and have learned not to take 1-2 doctor opinions. Also what they tell you in person is worse typed on paper, like they don't want you to know the truth about your health. Is it possible I could get this disease because I recently had a Upper Endoscopy! It confirmed my suspicion that my Reflux Surgery from 2008 had come unwrapped during my Cervical Surgery of early April 2016 performed by a Neurosurgeon. I let him know within weeks post-op. He ignored me but went to a Gastro Dr myself. Been on 3 different
Cowboy .. I felt that you did not finish this post: been on 3 different ..
What a journey you have been on!! PLEASE do think you could have MAC just by reading our site! You have had a ROTTEN experience! Thank heavens you did your "Due Diligence" and sought out a second opinion by another doctor!! NOBODY cares about you body as much as you do .. and you are given but one body in this lifetime . you darn better take care of it! Which you did! By not giving up and going for a 2nd opinion! BUT .. the ONLY way to confirm MAC is with a culture either by a sputum culture or a bronchoscopy .. AND unless you have symptoms of a lot of coughing etc .. what is your current concern?
If you truly are concerned .. your first step would be to make an appointment with an Infectious Disease Doctor .. they would be able to culture and confirm or deny if MAC is present. BUT you should FIRST ask "How many MAC patients have you treated in the past 12 months?" .. you don't want to start a journey with a doctor not knowledgeable about MAC! That would be wasted effort!
I am not a doctor but your question: "Is it possible I could get this disease because I recently had a Upper Endoscopy! " .. I just think it is apples and oranges. If you are REALLY concerned .. do the step above .. BUT don't drive yourself crazy by inferring that you are going to get every disease you read about .. that is crazy making. Put your time and energy into seeking serenity for yourself .. finding ways to "fill your cup" .. for each of us it is different. But you are 72 .. I am 73 .. we don't have forever .. we must make each day count .. make each day as fulfilling and happy as possible .. see sunshine and rainbows wherever we look .. why? Because that makes us smile and makes us happier. Find what makes you smile .. what makes you happy! I for one am sending you a BIG hUG and sharing a rainbow! Katherine
My recent Endoscopy showed my previous Reflux Surgery (Nissan Fundoplication) had come unwrapped causing my Reflux to return w the Cough and acid coming back in my throat. They put me on Prilosec first with no help whatsoever. I've been on Nexium 40 mg and Zantac 300mg about 3-4 mts with no sign of relief! My Neurosurgery said I should have the Reflux Surgery again! But I will leave that up to my 2nd opinion Gastro Dr at Mayo Clinic in December.
Cowboy, I am SO glad you are coming to Mayo .. Mecca as far as I am concerned! I also have Reflux/GERDS. I tried ALL the various remedies .. zero helped me until I tried Aciphex. That is the ONLY one that has helped! Unfortunately it is not a generic and requires an annual letter from my doctor to get ANY help on the cost .. but since it is the only one that works for me .. I am willing to pay the cost. Don't know if it might work for you but sounds like it is one that you have not tried?
SO glad you are getting this checked into .. because Dr. Aksamit indicated there is SOME research indicating there may be some correlation between GERDS and MAC. So I am really glad you are getting it checked .. Mayo is ALSO a great place for you to request to be checked for MAC because of this GERDS issue. May not be an issue .. but if you are concerned .. Mayo is the place to put your concerns to rest! Perhaps request this in advance so you don't have to make two different trips? Sending you positive energy and a hug! Katherine
No I have not tried Aciphex how many MG and how often? Great info from Dr Aksamit also! Thanks for trying to get both Reflux and MAC on same visit! I live in Tampa but will be moving to Jacksonville, Fl in the Spring but I need answers now so I have appt in mid Dec w a Mayo Gastro Dr there! Thanks for all your help! It is appreciated! Going to see Gastro Dr here in Tampa on Tuesday and ask him for prescription you mentioned.
I believe there are multiple. not sure how many, but my ID Drs said I had the non colonized kind. one of my cultures came back with a couple other MAC they said that they usually don't treat, and I believe they did not treat me for them.