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

Hi, everyone, How often do you get your hearing checked if you are on Azythromiacin? Linda

they aren't checking my hearing on Azythromiacin?! They just had me feel out a survey regarding my hearing now, but they have never said anything about checking it. I had to get my eyes checked for a baseline of my vision before i started this antibiotic. how about you? how long have you been on this antibiotic and how do you feel on it? Its causing me problems going to sleep.

@lindam272, Linda and @anr38, Angie, doing so so. Just have faith .. things get better! Hugs! Katherine

From my File Cabinet:
TESTING-baseline and periodic 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

OR TESTING:
BASELINE: HEARING AND VISION (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

TESTING RECOMMENDED FOR VITAMIN LEVELS 1. 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) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day... my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.'
TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmunary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine
TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmunary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine

Just for the record, @katemn, the MAC community welcomed Angie when she first posted on May 4. You'd be proud how everyone is stepping up and supporting each other. So great to have you pull info from the file cabinet and add it here. Tell Richard we promise to send you back to bed if we see you getting too active here and tiring yourself 🙂 We want you healthy as much as you do (and Richard does).

Colleen, SEE that PROVES I am not reading every single post! Indeed I am so very proud of our Connect Community! Hugs to all! Katherine

@boomerexpert, please watch the recording of the NTM conference last week at Georgetown Univ when it becomes available online. There was SO much information that I couldn't keep up with everything, my notes are quite incomplete and I wouldn't want to give the wrong information. But a few things mentioned there
1) chlorine and it's limited ability to kill all the NTM infection and thus leaving the remaining bacteria stronger.
2) the temp of hot water, which I think one doctor who spoke recommended above 120 degrees. My husband spoke with the doctor after the conference because we have a tankless water heater.
3) that the doctors at this conference do not all agree on treatment or prevention of this disease! (a BIG sigh from me)

Hello Katherine, are you still taking Unison for sleeping? I got me some and I will try to take some tonight. You just took half of it and help you to sleep? Also, I'm losing a lot of weight and I tried eating all the time still losing some. I have noticed my acid reflux got worse since I started the 3 meds. The Prevacid I'm taking seems like are not working anymore. Thank you all so much for your info. Blessing to you all. Cila

Katherine - I read your emails over and over as they are filled with such good information.. each time I find something new to focus on, that I missed before. Thank you, thank you! And continue to heal! Pamela

Thank you! I had my hearing tested Jan 10th but then forgot. The audiologist was supposed to send a reminder card and never did so I just went back today. Very miniscule changes so all is good. I have been getting my eyes checked at the opthamologist every 4-6 weeks but will go quarterly now since all appears stable. I have the vision test app on my phone to use in between visits. Thanks so much! Linda

@cila, Cila, for my Gerd .. the only one that works is Aciphex .. expensive but it works for me. Hope the below helps! Hugs to all! Katherine

From my File Cabinet:
For my weight loss .. this has helped between meals:
PROTEIN SHAKES A good article on protein shakes is: http://www.health.harvard.edu/staying-healthy/supplemental-nutrition-drinks-help-or-hype. Personally I did the "Bolthouse Farms Protein Plus Chocolate" .. it had 30grams of protein .. in the refrigerated section of the grocery store .. at $3.69 not cheap but with the most protein and least sugar I felt it was worth it for my health. (Best price I found 6/19 at Walmart $1.94)

SLEEP DISTURBANCE I can only speak for myself .. but I also had sleep disturbance .. and it has continued even after going off the antibiotics .. I am now "stable". As I have posted I really don't know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn't really matter .. 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!
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.)