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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I am noticing older posts as in years, are there updates from patients who have had MAC and have been treated for over a year? I was diagnosed a year and a half ago and treated for approximately 8 months however, due to liver counts had to quit treatment. My MAC is now registering positive again and I have been referred to CDC for treatment. Is there anyone who has completed the treatment and not had to go back on the medication?
Replies to "I am noticing older posts as in years, are there updates from patients who have had..."
Thank you for responding, my name is Linda. I am feeling a bit anxious to go back on the medication, due to the side effects I encountered last time. I was in the medical field and due to the short term memory issues and intestinal issues, it was just too much to remain working. I also encountered insomnia which may have been a contributor to the short term memory issue. I am also experiencing ganglion's in my finger joints and hip pain. Does anyone else have these unusual things happening to them during treatment or is it just coincidence? Are there others who have been on the medication who are now feeling well and have quality of life back?
@lbigboy .. Hello Linda, I know it is a bit scary to back on the antibiotics a second time .. BUT I have a File Cabinet of how different members have scheduled the meds .. because we each have different bodies with different reactions to the meds .. before you go back on the meds .. let me know and I will post the schedules Members have posted.. PLUS if you read the past pages of our Forum you will read that MOST of our member have experienced a lessening of the side effects after about a month or so .. SO if you can just tough it out in the beginning .. it REALLY does get better! Truly is a light at the end of the tunnel!
Truthfully I think most of your medical issues are coincidental. I don't know about you .. but as I am getting older I find sleep issues a problem. I googled it .. and what is working for me .. not advocating it BUT .. from my File Cabinet I have below:
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!
PLUS
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.)
Anyone else jump in for help/hints for Linda? Hope the above helps just a little! Hugs to you Linda! Katherine
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@lbigboy, Hello .. do you have a first name .. more personal. Yes, I did complete treatment .. and I have NOT had to go back on the medication! So far so good! I did have to be on the antibiotics for thirty months because I had two mycobacterium .. one was a pretty nasty one called: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES. Pretty hard to get rid of I guess. But so far so good as of my last appointment March 2017 for mycobacterium. However PSEUDOMONAS a different bacteria did show up and I am currently being treated for that. Hope that helps answer your question .. and hope others jump in with their answers. Katherine