Deal, @windwalker, Terri! I've wondered if some folks do ok taking the Big Three and just quit checking in on these forums since they're managing well.

I have been on Zithromycin, Rifampin and Ethambutol (briefly) for a few weeks and doing fairly well until adding the last drug. The 2nd time I took Ethambutol (2,000 mg.), I had intermittent shooting pains on the side of my skull, wavy vision occasionally & difficulty focusing on small print. I was told to discontinue taking it & go to an ophthalmologist asap. The eye specialist mentioned he had a patient go blind taking it, yikes!

My Mayo Doc said to restart it gradually & take a maximum of 1,500 mg. So wary of these drugs but encouraged by what others have said about possible "cure" after taking Big Three. I didn't think we could ever expect to be cured?? Maybe in remission for a few months or years?

@mariposa Sport! Ba ha ha!

@tdrell Yes, Terri. the fall came after the moving. No good deed goes unpunished.

@cld120 Carolyn, I honestly don't know what to think about the Big 3. My Mayo doc says he is against them unless a person is severely infected. Those drugs scare me. I think it may be a good idea for younger people to take them because they have stronger bodies to tolerate them. I opted to not take them back in 2005 because my body is so fragile and always has been. There is a lot documented out there for folks to do their due diligence on whether they think it is worth it. The future trend when the new drugs come out in the next 18 months is mainly using inhaleables. That way, the meds go directly into the lungs and spare going through your entire body. Cure rates are very low. The only institution claiming to be able to 'convert' someone is National Jewish Health. And even at that; the circumstances have to be just right.

@jenblalock Jen, I am not sure about 'toby' being like Amikacin. All I know about tobramycin is that it kills pseudomonas infections and this med is typically used for Cystic Fibrosis patients. I asked my Mayo doc if it also kills mac, he said no. I said to him that it was ironic then, because the toby stopped all of my coughing. I had been coughing every day from sun up to sun down for the past 10 years! Explain that! Did I have pseudomonas infection all of that time? Mind you, my past drs never gave me a sputem test, so we will never know.....

@cld120 Carolyn, here is the list again of how often to keep up with various tests while on the BIG 3. Take care of those eyes! From the 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

I'm checking in to say that I am "temporarily cured" of my symptoms! Not coughing up anything and feel well! This is after 2 rounds of antibiotics which killed the resident bacteria. I am well aware that I still have bronchiectasis and am very much at risk for reinfection, but I am enjoying my respite. I know that I am one of the fortunate ones....I had MAC in 2001 with treatment that worked. I've had lots of bronchitis and pneumonias over the years, as we traveled a lot and I was exposed to lots of bacteria and viruses. The latest infections started last year and I was diagnosed variously with asthma, chronic bronchitis, and COPD, but it's just the bronchiectasis and bacterial infections. Keep asking for sputum cultures! I will be 90 in December and have outlasted the MAC. The doctor says that pneumonia will probably do me in eventually, but so far so good. I've had a great life! robynmar

@robynmar
That's great news that you have remained without mac for so long it gives us hope and that's so important we all stay hopeful!!!

@robynmar Wonderful!!! When we first 'met', you were in rough shape. You Go girl!!!

Many thanks, Terri/@windwalker. I did have all baseline tests done, as recommended. After just two doses of Ethambutol, I had vision changes & shooting pains in skull and my new Infectious Disease doc at the University of Kentucky took me OFF of all 3 MAC medications until I see her again in two months! I am so relieved. Several docs (including my ophthalmologist) expressed surprise that I reacted so quickly to Ethambutol. Usually vision changes take 2-3 months of being on this drug. It is certainly confusing to have had so many medical reactions to this darn disease since earlier this summer! Original pulmonologist wanted to do surgery; first ID dr. wanted me on the Big Three for two years; Rochester Mayo dr. said 14 months on Big Three & now my new ID dr. is consulting with colleagues about taking a "wait and see" approach. At the least, I figure we'll develop some sort of plan to monitor my health & the progression (or remission) of MAC.