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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
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@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn't seem up to speed enough to help you to your best self.
Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine
Replies to "Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago I talked to my pulmonologist on..."
@pamelasc1 - Pamela, this webpage lists lots of interesting things, including the conference in Washington, DC. It's not a Mayo Clinioc conference, it's put on by the NTM Info & Research, Inc. - Paula
https://connect.mayoclinic.org/group/mac-bronchiectasis/?tab=discussions
Conference info is here . . .
2017 NTM & Bronchiectasis Physician/Patient Conference.
Join us at a day-long CME-accredited conference on nontuberculous mycobacterial (NTM) lung disease and bronchiectasis, on Friday, May 19, 2017 at Georgetown University in Washington, D.C.
Sessions will cover a range of important topics on these two diseases taught by key opinion leaders from around the world, and the day will also feature Patient and Industry Panel Discussions.
Registration is FREE and breakfast and lunch will be provided. Space is limited so register early to reserve your spot!
Click here to register for the conference!
http://campaign.r20.constantcontact.com/render?m=1101618704496&ca=a3bfadb1-a1c9-412a-9f55-a293ef414355
Click here to view the agenda and faculty.
https://www.ntminfo.org/images/media/News/conference_flyer.pdf
Hi Terri, Pamela, Tessie, and Paula, I just checked it out .. that would have been SO interesting .. and fun to catch up with everyone as a group but that is my granddaughter's college graduation festivities! We have had plane tickets for six months. If anyone attends be sure to bring back lots of notes and good information to our Forum! Hugs to all! Katherine
Pamela, Tessie, Paula, Terri - I registered but have to determine if I can afford to fly out from AZ. It would cost me over $1,000 between plane fare, hotel for a night and cab fare. Plus I have to pay someone to watch my dogs & cats while gone. Praying about it and will make a decision soon. Will let you know once I decide. Thanks for the info! Linda
<br><br><br><br><br>Great! I registered already.<br> <br><br>
<br><br><br><br><br>Will do Kathrine!<br> <br><br>
<br><br><br><br><br>Linda, I understand your dilemma. I am thinking of Air B&B a whole <br>house and perhaps others go in on it too. Terri M.<br> <br><br>
Hi, I booked a room at the Bird House Bed & Breakfast. I don't know how close it is to the conference but it is in the same Northwest section of D.C. It looks quaint! I hope it turns out well! It has excellent ratings! ~Jen
Looking for some guidance on probiotics. I am taking a daily probiotic at night and am finding I get gas. I can't take probiotics that are milk based because I have a lactose intolerance. Has anyone found a good dairy free probiotic? Last week I woke up with a sharp pain in my left lung every time I took a breath. Still there although not as painful as three days ago. I have been coughing green stuff, so I am afraid my NTM might be active again. My local pulmonary dr. took an X-ray and she said it looked like I had inflammation but wanted to rule out a blood clot. Take the test for the third time now since I started this broncho and NTM journey. Thankfully, no clot. Seeing Dr. Leventhal on Thursday and have another PFT and forced induced sputum test at the Mayo in Jacksonville. I think I see antibiotics in my future and I need to find a good probiotic. I am finally getting the SIBO under control and don't want to start on this vicious cycle again. Rosie
@melrosedecosmo .. Rosie, I just googled: lactose free probiotics and came up with .. Dairy-Free Mega Probiotics, Vegetarian Complex Suitable for all Ages, Normal Digestion, Irritable Bowel or Constipation. It has 15 billion .. and 8 strains .. read the reviews and see what you think .. I hope others will jump in who have actually tried a lactose free one! Personally I always take my probiotic in the morning on an empty stomach per the instructions .. have not had a problem with gas .. bet it is your lactose?
https://www.amazon.com/dp/B00CCZ9FU2
If you are coughing up GREEN stuff .. GLAD you are going to Mayo to Dr. Leventhal .. THE place you should be going .. YEAH!! Please keep us posted what happens .. you know we will be here every step of the way! Keep telling yourself that mantra .. to "Put my energy into what I can control .. and let go of what I can't control". ie .. you can control getting that Mayo appt .. doing what you are told at that appt .. but letting go of the outcome. Know we are here! Sending you a Hug! Katherine
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Indeed Pamela, although I'm in Toronto Ontario, I think it would be great to attend. The agenda certainly is full. I found: https://www.ntminfo.org/images/media/News/conference_flyer.pdf
thanks! Tes.