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@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier
https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier--Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate
held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Replies to "@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib,..."

Cila, just an FYI .. I have taken Aciphex since 2003 which in the med class of a PPI which Prevacid is alco .. in doing my due diligence I found:
1. TEST FOR VITAMIN B-12 If you use this medicine for longer than 3 years, you should develop a vitamin B-12 deficiency.
2. REGULAR TESTING TO MONITOR KIDNEY FUNCTION DUE TO PPI
John Hopkins University: This study concluded that the use of PPIs, which are commonly and widely used to treat conditions such as gastroesophageal reflux disease (GERD), is associated with a higher risk incident of CKD and AKI.

Because of this .. my Internist has checked for BOTH these issues. I take a Vitamin B-12 supplement .. and so far my kidney function is ok. But I just thought I would mention this for all of you since so many of us are on GERDS meds.

ONLY as an FYI a list of PPI'S could be:
* Available proton pump inhibitors include PP1 :
omeprazole (Prilosec, Prilosec OTC), lansoprazole (Prevacid, Prevacid 24-Hour),
dexlansoprazole (Dexilent, Kapidex) rabeprazole (Aciphex), pantoprazole (Protonix),
esomeprazole (Nexium), and. Zegarid, a rapid release form of omeprazole.

Just something to think about and chat your doctor about. Hugs to all! Katherine

Magnesium works well for me, too. I get the crystals to dissolve in warm water...one scoop does it, and it's yummy! Get it at my local health food store (in my case, Earth Origins) but could likely get it online as well.

katemn, thanks for this great summary, I have printed out and will have when l am seen at NJ....l have been on Nexium for over 15 years!
terrid

I also had night sweats at the beginning of MAC. I had googled before I knew and other than hormones, TB was listed as a cause. In researching MAC, after diagnosis, sweats was listed as symptom. I am 1 month off meds for MAC. Sweats are very occasional. They were so bad, I have had to change clothes and bed linens and would have almost every night.
Elaine K

Thank you so much for commenting on the night sweats. It occurred at the same time I was taking strong antibiotics for a cold and when I had another issue with my blood in my phlegm. I was anxious it would be new constant in my life - but so far so good the rest of this week. I am enjoying every day at school but not pushing myself at all in the evenings. My goal is to remain calm and yes - say thanks for all the good things that are a part of my life - and accept my body for what it can do and what it cannot do. I can not tell you how much I appreciate all your support. Kathryn

Re Night Sweats
A week or so after starting the big 3 I started to have short periods of feeling really hot, more like a hot flash. I do wake up in early hours of morning, and once awake a bit, I get hot and feel sweaty, sort of in my chest and back area. I don't WAKE UP swearing, it starts after my mind starts working. I sometimes feel a sudden flush and feel hot for 5-10 minutes in late afternoon or early evening.
When I look up night sweats, it says drenching sweating. I don't have that. I feel that mine might be related to one of the meds. Feeling hot, was an uncommon side effect of either E or R.

Anyone else get a hot flush a few times a day, or on waking? Think it's the meds or MAC? Thoughts?

The eye doc told me today, that bacteria are killed during their reproductive cycle by antibiotics. He said that since NTMs grow slowly, and have longer intervals between reproductive cycles, it takes a long time to kill them off. Not sure if this is true, thoughts?
Thanks all,

Kay Strand

I remember talking to my ob about night sweats a year ago.  I just started taking the big 3 as you call them for MAC 4 months ago.  So mine are not related to medication I feel.  But maybe for some ppl it is.<br><br><br>

The ones I had were as you described. I would wake up drenched to the point of having to change everything, self and bed linens. While on medicines last winter, I felt cold during the daytime. As far having to treat so long, that sound reasonable. Having experience with radiation treatments, occupational, the new baby cells were affected and easier killed than mature cells.
Elaine K

Hi Kay, interesting theory! But frankly I would hold judgment until I heard it from my Pulmonologist rather than even a good eye doctor. I am seeing Dr. Aksamit in November .. will try to remember to ask him then .. will get back to everyone with an answer then. Hugs! Katherine

Yes of course Katherine, the eye doc was just talking about Mycobacteria relative to other bacteria, and would love to know if what he says is true. Seems it would be explained scientifically on the Internet somewhere? If it's true, it seems meds shoukd work with the bacteria that reproduce slowly rather than say a pneumonia. I'm taking the same Med I took when I had a sinus infection.
Thanks for letting us know if you find out.
Kay Strand