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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
To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.
Replies to "To the best of my recollection, when I was at Mayo's 2 years ago I gave..."
Yep. It does indeed. I use boiled water for cleaning and rinsing aerobika and nebulizer. I even use boiled water for rinsing bowls after I have cleaned/rinsed the equipment. Don't know how long NTM stays on surface of things. Do you? Does anyone? So reluctant to plain old wash and rinse bowls with tap water. Saw on video that boiling for 10 minutes gets rid of all NTM. A respiratory therapist said that the microbiologist featured in video has revised that to 5 minutes. Don't know if that is true. Do you? I am still boiling for 10 minutes until I get a confirmation. I drink spring water and try to avoid regular water. So sad for us to be phobic about plain ole' water. I bath and shampoo in bathtub (head held under tub faucet). I think that is about as far as I can or will go with my water phobia. May eventually inquire about the filter that Katherine uses. It should be changed monthly but because hers is on a dedicated shower that only she uses, she changes hers every other month. Not sure I would even trust that. It is so easy for us to cross the line between due diligence, making intelligent decisions and "madness". Believe it or not, I am a therapist ... and I am as inclined as the next to cross that line. Terry
The first Bronchoscopy in 2015 when I had pneumonia came back with MAI and then a biopsy of a nodule did also. I have not been able to produce sputum for retesting so the will do another Bronch to get washings for culture.
Terry, I totally get that.
Hi Jo Ann, when do you go in for your next bronch? Terri M.
Will be happy to do so again (provided a while back...wish there was a way to search just one's own posts but alas...): To purchase the filters & housings for them (2), contact:
Mark Anderson
Janerotech, Inc.
- tell him Terri Benincasa referred you.
Installation package includes:
- Pleated, 0.2 Micron ABSOLUTE, 2.5"x20",
- DOE Silicone Gasket, for Bacteria Removal
- B890-BK34 Filter Housing, Standard, 2.5x20", with 3/4" PORTS
- Bracket, Steel, White , Single, for Standard Housing (2.5")
- 2 SCR-PK-5 Screw Pack for Single 2.5" (Bracket # BR-02-WC)
- 2 WR-3BK Wrench, for Standard 2.5" Housings
My total cost, including installation (need a plumber) was around $600.
I purchase the replacement filters in bulk (package of 6) - they cost around $75/each.
As you can see, this is a rather costly process, particularly for me on a fixed income, but I decided the cost to be well worth the ROI.
Terri
Agreed.
Then find someone else who will change your filters...sorry your hubby doesn't seem to get how important this is to your health; perhaps he doesn't? If he does, and remains unwilling, take charge!
Hello @boomerexpert, you may notice I removed the phone number and email that you shared from the public view. While we don't discourage you from sharing this valuable information, we reccommend that members share this kind of information via the private message function. This is for the safety of our members and those whose information is being shared for protection against unwanted spammers who may be watching the site.
If anyone would like the contact information Terri shared, I suggest you contact her by private message. You can do so by clicking on @boomerexpert username and then clicking on send private message.
Thank you for sharing this information Terri, and thank you for understanding our concerns about privacy.
Info is for a professional people in great need of whole-house filters, requested by other participants. This is not my, or anyone's personal info. Placed on main site so anyone can find it. I've told him I'm doing so and he's fine with it. Hope you'll put it back. Thanks!
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Hello Irene, that is my concern for boomerexpert.