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

@boomerexpert ...Thank you for your advice. It sounds as though you are being very careful. Does the MAC often just move or does it typically grow? When it starts growing is that when the Dr's want to start the cocktails? Do folks stay asymptomatic for long periods of time? Sorry...I know so little. The accupuncture sounds like a good idea as does the whole house water filter. I wonder about living with several cats in my bedroom and the dander...Perhaps an electronic air filter would be beneficial or would you think that might be overkill? I am not sure if the dander would exacerbate the condition. Finding this chat group is a God Send!! Thanks...Katie

Terri....I would be so upset with the treatment...or the lack of treatment that you received from your past Dr's. How awful!! I agree...a good Dr is worth their weight in gold.....and I am right there with you on your mindset about meds. I freak thinking about doing the big three...I hope not to go there!!

I am across the state from you in Sebring, FL. We go to an excellent Infectious Disease Doctor by the name of Dr. Lascon. Our Pulmonologist is also good but extremely busy. His name is Dr. Wong.

@alleycatkate, Hi Katie. I hope you don't mind me jumping in on you and @boomerexpert. An air purifier is NOT overkill. I have one in my room. It is a standing unit with a hepa filter. I run it mostly during pollen season, though I should use it every day. Cats do have sticky dander and it is advised to not have them when you have asthma or any other kind of lung issues. I am not saying to get rid of your cats. If you are like me; that would kill you before the dander would. I adore cats and want another one so bad. My pet kitty passed away in 2006. I have not gotten another one since because I know it is not in my best interest. An air purifier would def help. Also, doing the nebulized saline twice a day helps keep your lungs clean. BTW, I have a teacup poodle (5lbs) close enough to a kitty for me!

@nick52 Hi Nicole. You may want to edit this post for future readers. In the first paragraph, you stated that mac is not a bacteria and does not multiply. It is a bacteria and it does multiply. Not everyone's will multiply (colonize), some go away on it's own. For some people, it does multiply and kills lung tissue. That is what happened to me because mine went untreated for years. Thank you in advance for taking care of this. -Terri

@hallann Hi Annette, how are you doing now? Did your heart settle down? Did you mention that to your doctor?

@rmason, Hi Roxanne. @jkiemen (Jo Ann) might have some input for you. I think she may have struggled with that one too. Meanwhile, I will search through some old notesto find more info for you. I remember that Katherine @katemn found that taking some of those drugs in the 'Big 3' cocktail went better by adjusting the timing and maybe taking it on an empty stomach. I think it was one of the 'r' drugs that she took first thing in the morning. Everybody's body reacts different to meds. What works for one may not work for another. All we can do is try different ways. Sit tight, more responses will come in.

@alleycatkate Katie, there are options to treat mac besides the Big 3. There are nebulized medications that work well, like inhaled cipro, inhaled tobramycin (for pseudomonas) and others. I am on a diff regimen than most. I take antibiotics monthly, for life. My lungs are severely damaged, although you'd never guess that if you met me. Apparently, we can live well (or should I say well enough) with 37% lung function. Don't get me wrong, the fatigue is still aweful. I had a couch day all day today. Some days are like that. I don't want you to fear treatment.

@windwalker i  must have forgotten a word or something like that but I have no idea how to find the post so I can edit it.  Thanks Windwalker for letting me know. I must have explain myself wrongly. Can you tell me how to find it please. Nick

@rmason @windwalker - Here is what I found from Kate's post on her routine. You have to filter out all the other drugs she was taking for other health problems she had:
**the probiotics should not be taken for at least two hours after you take the antibiotics
SCHEDULE FOR MEDS AND VITAMINS November 2011
1. Wake up: take probiotic, Aciphex & Synthroid on empty stomach
(Aciphex-at least 1/2 hour before eating-1 hour after. Separate Probiotic from antibiotic by at least 2 hours!)
2. Wait 30 minutes: Eat breakfast .. .. take regular a.m. meds & vitamins
3. 1 puff Qvar .. rinse mouth well .. brush teeth.(SET 5 CELL PHONE ALARMS!!).
4. ONE hour later take Homeopathic remedy after nothing in mouth for one hour
5. AT LEAST THREE hours later .. take Rifampin on empty stomach.
(Rifampin 1 hour before or 2 hours after a meal with a full glass of water- 4 hour after vitamins)
*( IF POSSIBLE TAKE 2nd PROBIOTIC 2 hours after Rifampin)
6. AT LEAST ONE hour later.. take antiobiotics except Rifampin with a snack.
*OR 2 hours after Ripampin IF TOOK 2nd PROBIOTIC* (Avelox-4 hours after or 8 hour before multi vitamin with a full glass of water)
7. Six hours to Seven hours later take regular p.m. meds (Crestor &Evista) & multi vitamin & Nioxin (zinc)
after evening meal or snack. At least 2hrs (before or after) calcium, magnesium,iron or zinc.
8. Eight hours later take 2nd probiotics on empty stomach. **probiotics must be taken at least two hours after you take antibiotics
9. Nebulize Amikacin. Take nebulizer apart, clean in hot soapy water & sterilize nebulizer!
AVERAGE AMIKACIN SCHEDULE BETWEEN DAY TO DAY-try to stay same every day within 4 hours .. at least within a 12 hour period!
10. Before going to bed: take Homeopathic remedy after nothing in mouth for an hour. (as needed)
11. 1 puff Qvar .. rinse mouth well .. brush teeth.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

NOTES ON TAKING ANTIBIOTICS
Wake up am probiotic on empty stomach
Ripampin 1 hour before or 2 hours after a meal with a full glass of water- 4 hour before vitamins
Ethambutol and Avelox (sleep disturbance) with Azithromycin: after breakfast with a full glass of water
8 hour before or 4 hours after multi vitamin
Bedtime: take regular p.m. meds & multi vitamin, Evista, Lipitor and pm probiotic.
Separate multi vitamin & probiotics from antibiotics by at least 4 hours if possible)

I hope this helps you. Linda