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

@tdrell, Terri, I am SO jealous .. a newborn! It has been SO long since I could have a tummy kiss or a neck kiss .. you are SO lucky .. get kisses for me!! So Lucky!

Glad you are getting the sleep apnea equipment .. without it you are really subject to stroke and heart attack! I bug my husband to always travel with his .. he has a handy little carry case that he can take on an airplane. It took him several masks before he found one he found comfortable .. proper pressure .. that he didn't pull off during the night.

How are you lungs now .. better? Thinking of you .. Hugs! Katherine

@katemn Katherine, regarding your post about masks, I checked that mask out on google and love that it can be washed and reused. There is a black round area on it, I presume to attach an air supply. Does it need to be connected to one? I have heard that masks generally do not filter out viruses but this one says it does so that's a big plus. I do not have breathing difficulties but my transplant center (liver) tells it's post-transplant patients to wear a mask when flying which I expect to do in the fall.

I found it very difficult to find your posting, maybe eventually I will get more practiced in that. I wish there was an option to put newer posts first.

Thanks, JK

Katherine, let me clarify the info i gave about my pulmonologist. When i asked her if she had many MAC cases, she said probably 15. Now she could have meant over a period of time. I do know she is very knowedgeable on Bronchiectisis and Mac. I had pseudamonas bacteria first. I had the two week IV antibiotic and its gone, but it was found through a sputum culture that I also had MAC. This may be lenghty, but i'd like to tell you about how i got to this point. I moved here to the Ozarks 23 years ago from Maine. I got bronchitis often and would go on antibiotics several times a year. When i moved here , I was put in the hospital thinking I had pnuemonia, but a cloud on my lungs caused doctors to suspect TB. After culture came back negative, i was sent to Springfield, Mo. to a pulmonologist, since we didnt have one here. That doctor put me on long term antibiotics, Cipro 500 for ten days, off for ten days, then Cedax 200 for ten days, then off for ten days. This was my routine every month for 21 years. Yes, you read that right--21 years! I had no side effects at all. At the end of each ten days, i knew , when the coughing got bad, it was time for the antibiotics. I saw this pulmonologist every six months. Got a breathing test and x-ray.. I went to the gym three days a week, did yard work hours on end. Rarely got tired. Did anything i wanted to do. I continued going to Springfield because we had five different pulmonologist at our hospital here. They seemed to come and go, and i wanted to stick to one. Well, last year i started feeling very fatigued and over all, nust not my perky self. I told my doctor and he ordered a broncoscopy, and saw bacteria and gave my lungs a brushing. Took me off the antibiotics, put me on another one for 30 days every day. At the end of that, i was not feeling better, so he said i needed to go into the hospital here to have it it done, since i lived 2 1/2 hours from him. He called our hospital here and talked to the pulmonologist( which, by the way, has been here 6 years) saw her the next day, put into the hospital that afternoon. Started the treatment, sent out a sputum culture. She knew about the psuedamonas ( which she was treating), but the culture showed MAC also. I really don't think the pulmonologist I had all those years even knew anything about MAC. I realy believe my doctor now, knows . What happened is I became immune to the antibiotics and weakened my immune system to allow these bacterias to set up shop. Katherine, i'm sorry this was so long, but i just wanted you to know what a journey i've been on. This forum has been so good for me, because I can see I,m not alone. For the first month on the three meds, i was deathly sick and almost gave up. At first I was taking one of them in the morning, one at noon, and the one I thought was making me the sickest, I was taking at night. Well, I was sick all that day and the next day. Then I decided to take them all at once at 10:00 before bed. That meant I had 2 full days between and after my Friday night meds, i had 3 full days between, starting over again on Monday evening. That made it tolerable and each week I was less sick. Now I'm fine and with the exception of some fatigue, i'm back to my old self, activity wise. Thanks for listening, and I'm happy your husband is out of the hospital and doing well. Take care of yourself. Kathi(21042)

Thanks for the info I will beat this and yes I would like to know how you took you medicine please!!❤️

Hi turbo. Andi, this is how i learned to adjust to the meds. At first, I took one in the morning, then I took another around noon and took the Rifampin at night because I thought it was the one that made me the sickest. Well, I was sick ALL day long, then I would be sick most of the next day, and had to start all over on Wednesday. I was sick ALL the time. I truly didnt think I could make it and was almost ready to give up. Then one of the members on this Forum told me her schedule (Pamala, I believe). I tried it. Take ALL the meds at night before you go to bed. That way if you're nauseated, you're asleep. Then you have two full days off, before the Wed. night meds, then two more full days off before Fri nights meds. Then that gives you three FULL days off til Monday night again, Wow!. Usually, the day after , I would feel somewhat lathargic, but that didnt last long. Now, Im three months on meds and doing pretty much what i did before. I'm an active person and I never give up. Just make sure you take your meds at least 2-3 hours after you eat. I really pray that this works for you. I know everyones body reacts differently. If this works for you, you'll feel better faster than I did, because I didnt try this schedule until almost six weeks. Hang in there! I know you're determined. I could tell by your attitude. Friend, Kathi

Thank you for responding, my name is Linda. I am feeling a bit anxious to go back on the medication, due to the side effects I encountered last time. I was in the medical field and due to the short term memory issues and intestinal issues, it was just too much to remain working. I also encountered insomnia which may have been a contributor to the short term memory issue. I am also experiencing ganglion's in my finger joints and hip pain. Does anyone else have these unusual things happening to them during treatment or is it just coincidence? Are there others who have been on the medication who are now feeling well and have quality of life back?

Dear Katherine, I am so glad your husband is home from the hospital. I missed the original post as to why he was in the hospital. I do understand what is required as a loved one who happens to be the caretaker. My husband is a paraplegic, so when he is in the hospital I stay with him and take care of him. Blessings to you and healing to your husband!

@lbigboy .. do you have a first name .. more personal. Thank you for your kind thoughts! It must be a tough go for you as a caretaker .. are you aware of Mayo Connect as a Connect for Caregivers? https://connect.mayoclinic.org/group/caregivers/

As with ALL things in life .. we have people in our lives who love us .. BUT they really don't/CAN'T "get" what we are going through because it is NOT what THEY are going through. It is NOT because they don't love us/care about us .. it is just because it is NOT THEIR life experience. So sharing your thoughts/concerns/hints on Connect Caregivers MIGHT be helpful? Just a thought. Again, thank you .. each day he is getting a bit stronger .. walking the halls of our condo. Hugs to you! Katherine

@lbigboy .. Hello Linda, I know it is a bit scary to back on the antibiotics a second time .. BUT I have a File Cabinet of how different members have scheduled the meds .. because we each have different bodies with different reactions to the meds .. before you go back on the meds .. let me know and I will post the schedules Members have posted.. PLUS if you read the past pages of our Forum you will read that MOST of our member have experienced a lessening of the side effects after about a month or so .. SO if you can just tough it out in the beginning .. it REALLY does get better! Truly is a light at the end of the tunnel!

Truthfully I think most of your medical issues are coincidental. I don't know about you .. but as I am getting older I find sleep issues a problem. I googled it .. and what is working for me .. not advocating it BUT .. from my File Cabinet I have below:

I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use: a. ONE TwinLab Magnesium 400mg tab
https://smile.amazon.com/Twinlab-Magnesium-Caps-400mg-Capsules/dp/B003DIB8FC/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1484004326&sr=1-1&keywords=twinlabs%2Bmagnesium%2Bcaps&th=1
b. plus 1/2 tablet (tab no the gel) of Unisom .. an over the counter Sleep Aid tab (I purchase the generic brand blue one that I can bite in half) .. AND WOW! I am able to get to sleep plus get back to sleep when I frequently wake up at night! The TwinLab tabs have really helped me .. can't say they would for you .. but do be aware they will result in looser stools! I no longer need to take Fibercon 2x per day!

PLUS
Hello All, I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:
You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.
For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine
( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

Anyone else jump in for help/hints for Linda? Hope the above helps just a little! Hugs to you Linda! Katherine

@21042, Kathi .. thanks for jumping in .. it REALLY helps new people to hear success stories and how different people reacted .. what they did that DID NOT work .. and what DID work .. and ESPECIALL your wonderful words "and I never give up." .. just LOVED that! Again, thank you SO much! And yes you were correct .. it was the schedule from Pamela! I will repeat it below from my File Cabinet. Hugs to both of you @turbo, Andi! Katherine
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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