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@katemn

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

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Replies to "Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago I talked to my pulmonologist on..."

I agree! That doctor is "misguided." Everyone knows probiotics are good and helpful when you are on antibiotics. Irene

21042 - my dr didn't recommend probiotics, but I knew and also read on here that antibotics flush your system, of good bacteria too. I asked the pharmacist when I picked up my meds which one they recommended. Florastor was recommended to me, which I order online through costco, is the best price I've found. And I've found taking one in morning and one at night works best for me. Also with your 3 meds. My Dr recommended spreading them out. I took the rifampin and azrith together and felt nausea. So I take 1 at each meal now. Rifampin after breakfast , azrith (can't spell this one) after lunch and ethambutol after dinner. I have alot of other meds I take too at breakfast and dinner and bed for other things. Just have to keep switching them around to see what works for you. You can also call your pharmacist and ask for suggestions too. Whenever I start a new drug now I ask the pharmacist to pull up my rxs and see if any interfer with each other or ask for suggestions on when to take it. Good luck!

Dr Gwen Huitt ID MD specializing in NTM at National Jewish Health urges clients on the antibiotics to take probiotics...She earned a masters in Microbiology prior to attending Med school. And has worked with hundreds of NTM clients.terriD

Great answer Terri .. Thank you! I am going to add her advice to my File Cabinet! Hugs! Katherine

@jillnc, Jill, that is really good information. Each of our bodies is so different .. we are going to react differently to the meds .. so it helps Kathi to see that many of us have had to find our OWN pathway to success .. BUT we kept at it .. and achieved VICTORY! If we did it .. she can also!

@21042, Kathi, since you are new to our Forum .. know that if you want to get back to a particular post to refer to it again .. say back to Pamela's where she told you how she did her antibiotic schedule .. or above to @jillnc, Jill to remember how she did her's .. all you have to do is:

1. click on the @ portion of a member's name and it will take you to their "Activity" .. which lists all their posts
2. then if you want to get even fancier! up at the upper right there is a tiny magnifying glass. Click on it. A SEARCH field will come up. In the Search Field you can put as an example: PROBIOTICS .. and posts with that word in will come up! How 'bout that! Pretty neat trick huh!

Hugs to all! Katherine

<br> blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Thanks for your response on taking the meds as I am just going to start them on MondayOf course I am scared to deathMy doctor did not recommend a schedule of when to take them so I am very interested in the schedule that works for youI have to start somewhere and your experience will help to guide meHowever I am wondering if you take all of the meds with food. My understanding is that Rafampin needs to be takenOn an empty stomach either one hour before food or two hours after eatingWould really appreciate knowing more about your regimenThanks so muchLynnSent from Yahoo Mail for iPhone

Try not to be afraid. I had never heard of MAC and was so sick at the beginning. I had not found this forum until Inwas well on my way to being established. My doctor told me I could take the drugs at different times of the day or take them all at once. I experimented with times and finally started taking them all the first thing in the morning before breakfast as I could not notice feeling worse immediately after taking and just wanted to get it out of the way. I did not take Rifampin but was given Rifabutin. We all take basically the same drugs. Some 7 days a week and some every other day. My doctor gave me treatment every day. I feel like as long as our doctor is giving the same care, we do not have to go to a major medical to get good care. It gets better and is not intolerable. Just seeing the improvement on my chest films every month made it all seem better. Listen to your body and do whatever you have to to get through the first few months.

@lynnettehuler .. Lynn, With my history to drug sensitivity .. I requested that I start ONE DRUG at a time for ONE WEEK .. or at LEAST 4 days before adding a second drug .. so I could tell EXACTLY which/what drug was causing ANY potential side effect and I could isolate it .. hopefully watch for a side effect dwindle etc. THEN introduce a SECOND DRUG. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it!

**Below is what worked for me .. but keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)

2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!

3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most.

Lynn, I am going to add what worked for Pamela:
@pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut - the antibiotics wreak havoc with the gut. This can help with nausea - I take my probiotic with breakfast or lunch - do not take it late in the day. I use Ultra Jarro-Dophilus - 50 billion per capsule - will find in the frig at any health food store - I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts - they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela

Lynn, try mine first .. if that doesn't work .. then try Pamela's. With mine at least you will find WHICH one is causing WHAT side effect. But each of us must experiment and figure out what works best for our own bodies .. our bodies are so individual! Lynn, keep coming back and keep us posted on your progress .. we are all on this same shared journey. Hugs to you! Katherine

@lynnettehuler - I have been on meds for MAC since December last year. I began mid-December with Zithromyacin 1x day. Ten days later - the day after Christmas, I began the Ethambutol - 3 per day. I started out by spacing them apart through the afternoon. I began the Rifampin Jan 6th, right after I got back from a short trip to CA. The Rifampin gives me the most trouble of all the meds. I take 2 Rifampin and a Digestive Advantage probiotic all at once with a full bottle of water when I first get up in the morning. By the time I do my breathing treatment and get ready for my day, an hour has gone by and I have a light breakfast. I was taking the Zithromyacin with breakfast but it was giving me heartburn, so I pushed it out another hour which has helped. I take the Rifampin between 6:30 - 7 a.m., the Zithromyacin at 9a.m. and 3 Ethambutol between noon and 1:00 when I have lunch. I had lots of input from our mentor, Katherine, and another woman I know personally who also has MAC and CF. What I like about the way I'm taking these meds, is that I'm done by noon or 1:00. I can then take my vitamins and other supplements with dinner which is a good 4 - 6 hours after my last MAC med. The reason I take the Digestive Advantage probiotic is because I read a newspaper article where Dr Oz stated that he liked that particular probiotic because it held together longer so that more of whatever is in there reached the gut. It has binding agents to hold it together apparently. You might laugh at reading Dr Oz's name on this blog among all these awesome MAC docs, but it works. I was taking 3 probiotics before and decided to try the one (not to mention the least expensive one at that) and I'm not having any bad stomach trouble. I count myself one of the lucky ones not to be having such horrible side effects. There are some mornings where I just need to lay down for a few minutes while my body works on the meds and water I so rudely started the day off with but most days I'm able to get through the day with minimal disruption from the MAC and the meds. This blog has been a life saver for me. Reading the then, 19 pages of posts really opened my eyes and helped me to understand this disease like I would never have otherwise. This is information you won't get from your doctors. And what makes it so valuable, is that it's from people who are or have experienced it and have paved the way to make our lives a little bit easier by sharing their experiences. Best of luck to you! You can do this!! Linda

@21042 .. Kathi and @lynnettehuler Lynn and @lindam272, .. Linda's advice of "Reading the then, 19 pages of posts really opened my eyes and helped me to understand this disease like I would never have otherwise. This is information you won't get from your doctors. And what makes it so valuable, is that it's from people who are or have experienced it and have paved the way to make our lives a little bit easier by sharing their experiences" is EXACTLY what makes our MAC & BRONCHIETASIS Forum SO wonderful .. that fact that just today SO many members have jumped in to share their experiences and support to new people .. KNOWING just how scary it is in the beginning. This is just one GREAT community .. I am SO proud to be a part of it! So Kathi and Lynn .. read .. do your "due diligence" after educating yourselves .. and keep coming back with your questions and concerns .. we will be here for you every step of the way on this our shared journey. Hugs to all! Katherine