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

Welcome to our forum Jane. We are all here for you. Believe me, each and
every one of us was terrified when we got our diagnosis. This is an illness that
you definitely have to stay on top of. I will dig through my saved info to see
if I have Katherine's recommendations on the time schedule that she took her
meds that worked for her. Everyone is different, so it may not work for you, but
it is worth a try. I will go search for that file now.  Terri M.
 

Jane, I searched for the folder I had been saving info in; for some reason
nothing I saved went into it. If you read back through Katherine's posts, she
has a med schedule that worked great for her. I believe she took the worst one,
rifamkin? in the morning by itself......I don't know. You will have to find her
schedule. I do know that the timing of the drugs was crucial to lessoning the
side effects. Good luck with that. I hope others that may have saved that info
properly will step up and post it for you.
 
Terri
 

@windwalker - Jane - Here is Katherine's post re her med schedule. It's on page 18 of the discussion group: Hello Nan, hope you don’t think the below is weird .. BUT because I take various other meds I worked with the Pharmacist both at Mayo Clinic, Rochester MN as well as my local Pharmacist in putting together the below rather detailed scheduled. I just cut and pasted from my Word document rather than try to decipher it for you .. you can just take from it what works for you and “leave the rest”! Personally I rotated 3 different probiotics .. buying 3 different ones with the most billions .. that way I got various types .. in 30 months I didn’t get a single yeast infection from the 4 antibiotics I took. Hope you can make some sense of the below! It was what I had to do .. one of my antibiotics was nebulized .. the Amikacin.
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**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.
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Nan, you will learn so much if you just read through all the posts .. a LOT of knowledge and experiences! Keep coming back to the forum .. nice people who will support you through our shared journey! Sending you Hugs!
Katherine
Linda

Hi all,
I believe we have solved the issue with the error page when trying to access the website by clicking VIEW & REPLY.
Please do the following:

1. Go to Connect's homepage here: https://connect.mayoclinic.org/
2. Login (if you're not already logged in).
3. Go back to the email notification and click VIEW & REPLY.

You should now be able to get to the messages as you usually do.

Thank you, Linda. I was looking for the schedule of the BIG THREE that are
taken for MAC. Those are the ones that are tricky and need to be taken on a good
schedule.
 

Hi Colleen, it's working now. But I still get error when trying to View & Reply for the older postings. I started having problems when Katherine posted the message about taking a break from her monitor position on the forum. I have saved the email notification hoping I'd be able to post something to her message. The link is still broken with the View & Reply to that email. I don't know how I can find her posting from all these postings since then.

@windwalker, Terri and @lindam272 Linda, I have strict instruction from family members to STAY AWAY from Connect .. BUT all of you are like family to me .. and like the air I breathe after all this time .. I PROMISE to focus on my recovery after this .. BUT it was so easy for me just to grab the below info from my File Cabinet .. just took a minute .. grabbed it ALL .. hope it helps someone! Know that I think of ALL of you daily and send all of you positive energy and hugs! Katherine
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ANTIBIOTIC ..MY PERSONAL EXPERIENCE WITH SCHEDULING ANTIBIOTICS
These would be my suggestions to you based on my experience and my research:
**Make SURE you request a “test for antibiotic sensitivity after your sputum culture showed MAC” .. so your doctor KNOWS exactly WHICH antibiotic will be effective for YOUR particular mycobacterium!!

From a Member: Had side effects. Then my pulmonologist took me off all meds to make sure nothing else was going on. My pulmonologist suggested that I re-start the meds one at a time. I went on first one for two weeks (pulmonologist suggested that it be for two weeks); then a second for two weeks; and then a third for two weeks. I also decided that it was time to go on an anti-anxiety pill to help with the "nervousness" and all that it entails. Went to a psychiatrist and am on Lorazepam (anywhere from .5 to 1 mg). That is extremely helpful. No shame in that at all; proud of myself for admitting that I needed that kind of assistance. Wishing you better days.

**With my history to drug sensitivity .. I requested that I start ONE DRUG at a time for ONE WEEK .. or at LEAST 4 days before adding a second drug .. so I could tell EXACTLY which/what drug was causing ANY potential side effect and I could isolate it .. hopefully watch for a side effect dwindle etc. THEN introduce a SECOND DRUG. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it!

TRUST ME! The absolute WORST thing you can do is begin to be stressed about this process .. just go with the flow .. "trust the process" .. put your energy into what you can control .. and let go of what you CANNOT control! You can control gathering the best information possible from all of us .. BUT knowing each of us have different bodies .. different body chemistries .. ways our bodies will react. YOU will just have to go with the flow .. see how YOUR body reacts .. TRUST your body .. ADJUST to how your body is reacting .. TRUST your body .. WORK with your body. Know that your body is your friend .. know that if you take care of your body .. your body can take care of you in the future! So for now .. do NOT try to control the outcome .. the outcome will take care of itself! Trust the process .. trust yourself .. trust us .. we have been through it and have come out on the out side .. you will also. As member @irene5 Irene, said " You know your body best. You will need to listen to it and it's infinite wisdom."

**Below is what worked for me .. but keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most.

ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.

BEST
Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel "lousy" the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!

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

OR @lindam272,Linda The Rifampin gives me the most trouble of all the meds. I take 2 Rifampin and a Digestive Advantage probiotic all at once with a full bottle of water when I first get up in the morning. By the time I do my breathing treatment and get ready for my day, an hour has gone by and I have a light breakfast. I was taking the Zithromyacin with breakfast but it was giving me heartburn, so I pushed it out another hour which has helped. I take the Rifampin between 6:30 - 7 a.m., the Zithromyacin at 9a.m. and 3 Ethambutol between noon and 1:00 when I have lunch. What I like about the way I'm taking these meds, is that I'm done by noon or 1:00. I can then take my vitamins and other supplements with dinner which is a good 4 - 6 hours after my last MAC med.

Yes! Linda, this was the schedule i was thinking of. Please ignore my last post. I did not see your post in it's entirety. Thank you so much for digging this out of the archives for Jane. Terri M.

Hi Katherine! I had a feeling you would see this and jump in. Linda was
able to dig this out of the archives though. You were a doll to re-post this,
but you need to go lay low girlfriend. Big Hug -Terri M.
 

Thinking of you sending silent blessings!
linda