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

I'm a little confused if I would have to have an Infectious Disease doctor ALSO if I have a Pulmonary doctor that specializes in MAI/MAC. I can't seem to find an Infectious disease Dr. In my area but have made an appointment with Dr. Kamelhar at NYU. He was listed on the NTM website as being a specialist in NTMs. I won't be seeing my prior pulmonary Dr. since I have moved and especially because she wasn't very knowledgeable about this disease.

I too have a pulmonologist who specializes in MAC...no need for ID as well...the key is having someone who is exceptionally proficient with managing the infection

Thank you.

Amen I start Friday on my antibiotics so I will conquer this!! Love my pulmonologist she explains everything so I can't ask for more!! Still want to work so out right now but going back as soon as I can!!❤️

Thanks for the information I trust my pulmonologist and will proceed to get this treated!! I have faith and my name is Andrea nickname Andi!! To tough to keep down only one live to live I give it my all!❤️

@turbo .. Hi Andi, SO glad you have found a Pulmonologist that you like and trust .. not everyone found that in the beginning .. you're blessed! Keep us posted on how things go .. we're here for you! Hugs! Katherie

@ginak .. Gina, IF your "Pulmonary doctor that specializes in MAI/MAC" .. NO you DO NOT also need an Infectious Disease Doctor. It is just that MOST Pulmonologists are NOT knowledgeable about MAC .. YOU just got lucky! If yours specializes in MAC .. stick with them if you are happy with the care you are getting and have an "attitude of gratitude" that you found a good one! YEAH!

Hope that explains it .. if not get back and ask for further clarification! But as long as you have a Pulmonary doctor that specializes in MAI/MAC right in you own area .. getting appropriate care.. that is all you need! Hugs! Katherine

@turbo, Andi, here are some thoughts from my File Cabinet on starting the antibiotics .. hope they help! Hugs! Katherine

ANTIBIOTIC .. MYCOBACTERIUM SUSCEPTIBILITY PANEL TESTING *testing and therefore should provide—or should ensure—access to susceptibility testing of MTBC against the full panel of primary antituberculous drugs, as well as against secondary drugs, when indicated. * Currently, universally accepted guidelines concerning the indications for susceptibility testing of MAC do not exist. However, investigators who have extensive experience with MAC have recommended that the following isolates be tested

Susceptibility Testing for Mycobacteria http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805 http://cid.oxfordjournals.org/content/31/5/1209.full http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

ANTIBIOTIC ..MY PERSONAL EXPERIENCE WITH SCHEDULING ANTIBIOTICS
These would be my suggestions to you based on my experience and my research:
**Make SURE you request a “test for antibiotic sensitivity after your sputum culture showed MAC” .. so your doctor KNOWS exactly WHICH antibiotic will be effective for YOUR particular mycobacterium!!

From a Member: Had side effects. Then my pulmonologist took me off all meds to make sure nothing else was going on. My pulmonologist suggested that I re-start the meds one at a time. I went on first one for two weeks (pulmonologist suggested that it be for two weeks); then a second for two weeks; and then a third for two weeks. I also decided that it was time to go on an anti-anxiety pill to help with the "nervousness" and all that it entails. Went to a psychiatrist and am on Lorazepam (anywhere from .5 to 1 mg). That is extremely helpful. No shame in that at all; proud of myself for admitting that I needed that kind of assistance. Wishing you better days.
**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!

TRUST ME! The absolute WORST thing you can do is begin to be stressed about this process .. just go with the flow .. "trust the process" .. put your energy into what you can control .. and let go of what you CANNOT control! You can control gathering the best information possible from all of us .. BUT knowing each of us have different bodies .. different body chemistries .. ways our bodies will react. YOU will just have to go with the flow .. see how YOUR body reacts .. TRUST your body .. ADJUST to how your body is reacting .. TRUST your body .. WORK with your body. Know that your body is your friend .. know that if you take care of your body .. your body can take care of you in the future! So for now .. do NOT try to control the outcome .. the outcome will take care of itself! Trust the process .. trust yourself .. trust us .. we have been through it and have come out on the out side .. you will also. As member @irene5 Irene, said " You know your body best. You will need to listen to it and it's infinite wisdom."

**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.

ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.

BEST Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel "lousy" the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!

SCHEDULING ANTIBIOTICS From Member @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
OR @lindam272,Linda 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. 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.

Hey Turbo. I like your attitude. Sounds like me! Youll make it. Im on the meds now for three months. The first month was very rough, but i figured if other people can do it, so can I. The nausea is gone, but i get fatigued, but my doctor said that will get better. I'm back doing most of the things i did before. I also like my doctor. She explains everything to me and is very knowledgeable on the MAC. Shes treating 15 patients with MAC right now, which is quite a number since i live in a small town of 10,000. Ive gotten good info from others on this forum. If you would like my med schedule, let me know. If works really well for me. Kathi (21042)

Kathi (21042) Hi Kathi, good to hear from you and that you are doing so well! Thanks for jumping in to support @turbo .. she is having a tough time. You were sure lucky to find a doctor with 15 MAC patients .. WOW .. wonder why so many MAC patients in such a small town .. makes you wonder??

When you have time .. I'd love to add your med schedule to my File Cabinet .. the med schedule is absolutely NOT one size fits all and I'd like to have several to offer new people .. everyone's body is so different .. what works for one person will NOT work for another. Any other tips you might have that helped you also .. just add them .. they are great addition to our pages! Just do it as you have time .. appreciate it! Hugs! Katherine