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

I live in Greenville SC while it's a drive, I can recommend Dr William Curran from the Lung Center of Patewood The general number is 864 464 4200It is not easy to find a specialist who knows about and has treated MACI have also been seen by Dr Patrick Flume at MUSC. MUSC had a MAC clinic. He is great however I have chosen to stay with Dr Curran in Greenville as travel to CharlestonIs too difficult. We also have a MAC support in Greenville SC. I believe we will be having a meeting in Januarywe are a group of 30 to 40 members from all over the area. It's very helpful to meet with others who are sharing your journey. I hope this is helpful and wish both you and your wife succes as you move forward.
Best Lynn

Dear Bruce and wife, I am so glad you found our Forum! It sounds like you are really going through a tough time! I strongly suggest as you have time and energy you read through the past pages of our Forum .. you will learn a great deal about your disease .. PLUS find really kind supportive people who share your journey on this disease. Because you probably need at this time kind of a quick recap that you can print out .. I will do my best to give it to you. BUT please do read through the past pages. Here goes .. this is very long and redundant for current members .. so current members PLEASE IGNORE!:

I was diagnosed in 2007 and unfortunately due to the lack of knowledge and information available on this Forum I did not go on the antibiotic treatment until October 2011. I was on 4-5 antibiotics for thirty months due to the severity of my condition. I had two different mycobacteriums: MYCOBACTERIUM AVIUM and MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES. If it helps you in the future .. I personally was on: Azithromycin 250mg/Avelox 400mg/2-Rifampin (rifubutin) 300mg/Amikacin 2ml-inhaled and Ethambutol 800mg.

I RECOMMEND YOU READ THIS ARTICLE
I would especially recommend an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf

GOOD INFO: http://maclungdisease.org/frequently-asked-questions

MAYO CONTACT INFO
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

TESTING
I understand the typical “Big 3” are: Ethambutol, Rifampin, & Azithromycin.
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 shows MAC” .. so your doctor KNOWS exactly WHICH antibiotic will be effective for YOUR particular mycobacterium!!

Since you have not started your meds yet .. I would recommend that you request that you start ONE antibiotic at a time for ONE WEEK .. or at LEAST 4 days before adding a second antibiotic .. so you can tell EXACTLY which/what antibiotic is causing ANY potential side effect and you can isolate it .. hopefully watching for a side effect dwindling etc. THEN introduce a SECOND antibiotic. 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! You are given just one body in this life time .. NOBODY cares about your body as much as you do! You must take care of that ONE body .. so that IT can take care of you!

RECOMMENDED TESTING:
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

On TESTING:
BASELINE: HEARING and VISION (Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY

************
**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.)
3. ETHAMBUTOL AND AZITHROMYCIN: take with a LIGHT snack .. 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!)
+++++++++++++++++++++++++++++++++++++++++++++++++++

VARIOUS NOTES I HAVE MADE IN THE PAST
**if you have tummy problems try to eat 5 small meals a day instead of the usual 3 meals.
**ginger chews have helped some people with nausea (one review I read: I bought them for my brother who is undergoing chemo & this so far has prevented any nausea or worse that people have associated with the chemo drugs. For me, I would spend more if it did the job.) TUMMYDROPS GINGER
https://www.amazon.com/Tummydrops-Ginger-individually-wrapped-drops/dp/B004BH15K2#Ask
**GERDS is very common .. either before or after meds. I had it prior to meds .. I think a result of a terrible bout of pneumonia in 2003 and multiple prescriptions of antibiotics and steroids .. just ripped up my stomach. Dr. Aksamit said it is thought there is a connection between GERDS and MAC.
**drink LOTS of water to maintain kidney health
** ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD)
**ask for your B-12 level to be checked .. they can get too low
**due to dry mouth I use Biotene toothpaste and Dry Mouth Oral Rinse
**I took and still take “Maximum Strength Mucinex®-Thins & loosens mucus” to help cough up mucus. The mucus is a breeding ground for future mycobacterium to grow. Got to get that darn mucus out of our bodies! That is why I use two inhalers twice daily .. causes me to cough heartily .. I consider that my “daily lung hygiene”! Confirm with your Doctor this is ok
**A good website to refer to .. might be helpful to you: https://www.ntminfo.org/faq
**Yes I did have fatigue, sleep disturbance, loss of appetite .. BUT in time I could deal well with my life .. working out and living life! Now I have been “stable” on off ALL antibiotics since May 2014 .. so there IS life after the treatment.

*I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side.

Please do keep coming back .. you will find really kind supportive people here who will support you through this journey. I am sending you a BIG hug in this very tough time! Katherine

@apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, and anyone else I forgot to make note of!

HELP!! You will note the new member @bruce668 .. Bruce .. requesting help in finding a good doctor in Asheville NC. With my terrible memory .. I only remember that one of you found a good MAC doctor in North Carolina .. PLEASE post to Bruce with that information! It certainly would be worth his time to drive a bit to work with a GOOD MAC doctor who knows what he is doing and knows our disease!

We all remember how scary it is when you are first diagnosed .. PLUS his wife was ALSO diagnosed with it. BOTH of them .. WOW .. how tough. We really need to be there for them in this difficult time .. we well know this journey .. AND around the Holidays. Let us be WHO we are .. a kind supportive community who are all on this journey together. Sending you all a Big Holiday Hug! Katherine

If I recall that post, it was Charlottesville - I know Duke does little as I checked there...

Lynn, thank you for jumping in! If Bruce and his wife cannot find a good doctor in North Carolina .. who knows .. they may try your recommendation .. I just know every little bit helps in the beginning. It certainly is tough with both being diagnosed. Again, thank you. Hugs to you! Katherine

Hi Bruce,
I go to a clinic at UNC in Chapel Hill called the UNC Center for Bronchiectasis Care. They treat Bronchiectasis and any NTM's such as MAC. I've only been there twice but I'm very happy with the care I'm getting. I went to Duke before that but wasn't comfortable with the treatment I was getting. I don't know what kind of doctor you are seeing but it should be an infectious disease specialist and pulmonologist. Everybody is at different stages with the disease so as Katherine has said you have to do your homework to decide whether you feel comfortable with what your doctor is suggesting for treatment. Not every Dr. has a lot of knowledge about MAC. I think some of the people on this forum know more than some of the Dr's I've seen! I appear to have a mild case of MAC and Bronchiectasis so at this stage I'm just being watched and I'm doing lung clearance exercises to breakup and get out some of the MAC. I see my Dr every 3 months and have a lung function test at each appt. If my symptoms change - I will have to go on to plan B. But, so far so good. Do lots of research, find a Dr. you trust that has dealt with this a lot and that will monitor you closely. We're all here to answer any questions or offer advice. How awful that both of you have it. I wonder how often that happens. Good luck. I hope you get good news at your appt. Janet

If I have my information correct, my wife and I have disseminated infection because it has spread to almost every organ in our body and we have had it for three years. The doctors we have seen , seem to know very little about this and act like it's nothing but it almost took my life in the first two years and my wife has enlarged liver and spleen plus our intestines doesnt work like they use to. I have a lot if nodules in my lungs and my lympnodes were enlarged . Now I take spells when I spit up a lot of blood . My wife has had insurance but I just got some last week and I can get a referral to a specialist this Friday . My wife gets sores all over the top of her head , sores on her arms that last for months and we both have figure tips that split open. Is this normal for this disease? My wife also had two penicillium and rare candida aalbians as well as mycobacterium avium- intracellular complex . We are very sick and afraid because our doctors have acted like we are not that sick and have nothing to worry about. I will keep reading on this forum but if anyone has any information they feel , is a must know , please feel free to tell us . Thank you all for the information and for someone that understands !!

Hi Janet! You are indeed a sweetie! I KNEW someone had this good experience .. but as I say "I can't always remember what I had for lunch yesterday!" .. so I can't always remember all the details .. just knew it was out there on our Forum! Thank you so much for jumping in with help! Hugs to you! Katherine

I'm at the same stage as you are Janet. I have felt better since I had my A/C unit with ducts replaced and I stay away from dust and chemicals which cause me to go into coughing fits. May have to get a cleaning lady! It's worth it. My pulmonologist is waiting until a cscan shows that he will be definitely able to get a sample of my bacteria. I have nodes in my upper right lode that are hard to reach apparently and I can not give a sputum sample. So, I am feeling someone stronger and the season - whatever religion you are - brings joy to my soul as I hope it does for you. Wishing you the best. Kathryn

Hi @bruce668 and wife , I hope you can get to the right doctor soon, the people on this site are fantastic and will give you great advice, I think all of us on here have been afraid at first because it is a hard condition to understand , but finding a doctor who knows about MAC will be a great first step, I live in New Zealand and finding a doctor who was experienced in MAC wasnt easy. I hope you find that things are not as bad as you thought. Please keep us updated and dont hesitate to ask us anything, I know I had many questions at first. I do not have the sores or split fingertips and have not heard of this being related but others may be able to help more with this.