Mayo Clinic Connect
I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!
Liked by Dee, adair, crepass
I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I’ve been told this mycobacterium is rare and difficult to treat.
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Dear @patw,(do you have a first name) I am going to answer you despite the fact I have been lying low .. my wonderful members have been taking up the slack answering VERY well!
I am taking the time to answer you because getting a diagnosis of mycobacterium abscessus is not that common .. but we share that. I also did. BUT I came out on the other side and you will also! BUT it bugs me to have you be told ‘According to our control disease center they did not know how to treat this disease.’ Well, THEY are VERY misinformed .. or poorly educated .. OR just don’t want to make the effort!!
You can tell them that My doctor, Dr.. Timothy Aksamit at Mayo Clinic, Rochester Minnesota CERTAINLY did know how to treat this disease when I was diagnosed in 2007!! He certainly did NOT whine and say he didn’t know what to do! Here is what I was prescribed .. YOUR situation may be different .. I am jus saying this is what I did:
per day: Azithromycin 250mg ..Avelox 400mg ..2-Rifampin 300mg .. Amikacin 2ml-inhaled 5x week Ethambutol 800mg
One important question I would be asking you Infectious Disease doctor: How many MAC patients have you treated in the past 12 months? THIS will tell you just how knowledgeable this person is about our shared disease! You want someone who KNOWS!!
@patw, I really glad you found us .. you will find a really supportive community of people .. I would encourage you to read the pages of the main Forum to educate yourself to our shared disease ..then to post any questions you might have .. we have really nice people here. I just jumped in because not many people share the mycobacterium abscessus .. it is more difficult to treat. Hugs to you in this tough time. Katherine
Check out: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=25
Liked by Colleen Young, Connect Director, Dee
Thank you for the info. I had IV for 2 months but I only take 3 pills twice a day. It is rough sometimes due to stomach painI see the dr in a couple of weeks and I will ask how many mac patients she has.
Liked by Katherine, Alumni Mentor, Dee
Dear @patw, .. do you have a first name? When you see you doctor .. you might notice in previous posts up above from @tutti .. that she says “I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.’ Why not ask your doctor ALSO to consult about your treatment of mycobacterium abscessus .. BECAUSE it IS more difficult than the usual MAC. I would advice you to be your OWN best advocate! You are only given one body in this lifetime .. and NOBODY cares about it as much as you do! NO DOCTOR for sure .. YOU need to do your ‘due diligence’ in getting the very best medical care possible!
In terms of the stomach pain .. have you been diagnosed with GERD? Are you taking medication for it? It is very common with MAC. Ask your doctor about it. Until then:
* Prop up the bed. When you stick blocks under the head of your bed and raise it 6 to 8 inches, gravity will prevent the acids in your stomach from flowing into the esophagus during the night. Tight waistbands can aggravate your GERD symptoms. Wear looser clothing, especially at night. YOU COULD DO THIS .. which a good friend of ours did with his GERDS .. RAISED HIS BED VIA BED RISERS .. read the reviews $18. Home-it Adjustable Bed Risers or Furniture Riser bed lifts in Heights of 8, 5 or 3 Inches Heavy Duty Set of 4 bed riser
ALSO Helpful: *fluid restriction 6 ounces an hour including yogurt ice cream….no eating 3 hours before sleep…no laying on right side when sleeping….anatomically it encourages fluid from stomach to go into lungs.
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!!
**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!
**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.
Hope some of the above helps! Sending you a hug! Katherine
Liked by Dee
Hello, my name is Bri. I am 25 years old and got diagnosed with Bronchiectasis about 1.5 years ago. I present with many symptoms and have a constant cough. I am lucky that I was able to be seen at Mayo so quickly after my diagnosis as it is very severe for an unknown reason. I did not have any illness or infection that is thought to have caused it. I am in the middle of being tested for everything under the sun… hopefully answers will come soon! Just wanted to introduce myself in hopes that this support will help ease some of the angst.
It is Pat. Thanks again for information. I called my dr this morning because my hands and face were red and swollen. No meds until I see her Tuesday.
@patw .. Pat, I am so glad you called your doctor .. red and swollen extremities sound like a strange reaction. I would really like you to discuss with you doctor the fact that you have found our Mayo Clinic Connect .. that others on this Forum have doctors that CONSULT with doctors at Mayo Clinic, Rochester Minnesota who are experts on Mycobacterium Avium-Intracellulare Pulmonary Disease. Will she please call them and consult. Pat, if she refuses .. I would STRONGLY suggest that you seek out an Infectious Disease doctor and get a second opinion on your situation. I can guide you if you choose to do this. This is YOUR body .. you are given just ONE body in this lifetime .. if you don’t take care of it .. no one is going to do it for you. YOU must be your own best advocate .. no one is going to do it for you girlfriend!
I am so sorry you are going through this .. a tough situation .. a real rip. Get some rest .. take good care of yourself right now over the week end and know that I am thinking of you .. sending you lots of positive energy and a Big Hug! Katherine
Hello. I went to the dr and she said it was the Doxy-cycline She said I had to keep taking it and to stay out of the sun! I may be going to Scott and White in Temple Texas. I am at a lost about all of this medicine. It causes so many side effects. I am going to take all of my records and X-rays with me if I go. Thank you for your e-mails
@patw .. Pat, I’m so glad you are checking in. Question: I may be going to Scott and White in Temple Texas .. are they specialist in MAC .. is there a special reason you are going there? I am so glad you are gathering all your records and Xrays .. get any CT Scans also if you have had any .. it will really help lay a foundation for any new doctor. Pat, please keep us posted .. I know it is a scary time with all the meds and not totally understanding it all. When you see the new doctor .. take LOTS of notes at the meetings and then after add to the notes. I know that after the appointment I always remember more things that I can add. I will be thinking of you. Let us know if there is anything else we can help you with! Sending you a big Hug .. I know this is a tough time! Katherine
I was recently diagnosed with Bronchiectasis post pneumonia. I have no to few symptoms (very occasional productive cough). No sputum culture yet. Had second CT scan last Friday, definitive results not in. Pulmonologist started me on Hypertonic saline with albuterol nebs and flutter device twice a day to try to induce sputum. Will start today. Would like a second opinion at Mayo with pulmonologist specializing in Bronchiectasis. I don’t know if I have MAC as no sputum has yet been analyzed.
Hi @conniec, welcome to Connect.
I moved your message to this discussion about bronchiectasis so that you could meet other members who have it. Please meet
@katemn @mmteach @lauralynn @tutti @dixer @kaystrand and @_bri_, several of who are currently Mayo Clinic patients.
To request a second opinion, please contact Mayo Clinic at one of our 3 campuses in Minnesota, Florida or Arizona: http://mayocl.in/1mtmR63
You may also be interested in reading and joining in these discussions:
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS http://mayocl.in/2cwX36M
– Bronchiectasis and staving off recurrent infections http://mayocl.in/2oEU1BY
– Have Bronchiectasis, recently diagnosed with pseumonas. http://mayocl.in/2pXkHio
Connie, when do you expect to get the results of the CT scan?
Dear All, if you have Bronchiectasis AND in case you are not already a subscriber please DO subscribe to day at:
Ignore if you already have read .. but I really liked .. Hugs to all! Katherine
9 QUESTIONS TO ASK THE DOCTOR ABOUT YOUR BRONCHIETASIS:
PLUS I just registered for the below:
https://www.ntminfo.org/component/k2/item/187?Itemid=566 (check out if there is a facility near you!)
Mayo Clinic, Rochester, MN; Physician: Timothy Aksamit, MD; Coordinator: Kathy Mieras; Phone: 507-284-9187; Email: email@example.com
Thirteen participating centers in the newly-available NTM Registry (as part of the COPD Foundation’s existing Bronchiectasis Registry) are enrolling patients who are eligible and wish to be enrolled.
The Registry provides a pool of patients as potential clinical trial participants, accelerating the rate of research into new treatments which may help NTM patients. Participation is voluntary, meaning that every patient enrolled has agreed to be entered into the database, and patients can be enrolled through one of the participating centers located throughout the country.
“The Registry expansion to include NTM patients represents a tremendous opportunity to raise awareness of NTM lung disease and to learn more about various aspects of it, including why some get sick and others don’t, and how treatments can be standardized or modified to the greater benefit of patients,” said Philip Leitman, President of NTM Info & Research (NTMir).
NTMir funded the initial work to expand the Registry and will cover the cost of the first 1,500 NTM patients enrolled in it. The organization is also currently exploring the possibility of adding new participating institutional sites in order to broaden the reach of the Registry across the country.
A list of participating centers with approval is below, and we will update it as the remaining centers obtain their approvals.
Dear All, from my File Cabinet re: Blood .. Hugs to all! Katherine
BLOOD/BLEEDING/BRONCHIECTASIS From Member @colapyrus, Jan I have also had hemoptysis (Hemoptysis is the coughing up of blood or blood-stained mucus from the bronchi, larynx, trachea, or lungs) – several times this past year. It usually lasts about 15 minutes and then stops on its own. When I was at NJH in May they said it will stop about 80% of the time on its own and 20% of the time you need some help. In my case I was told to lie on my right side (because my bronchiectasis is in my right middle lobe) then go to a hospital with intervention radiology. They can stop the bleeding by ‘plugging’ the blood vessel. Just wanted to pass that on. Jan **NOTE: : for those of us with Bronchiectasis .. might it be a wise precautionary measure to at least call our closest ER .. ASK if they have an interventional radiologist? Otherwise when we get there we are out of luck! (Interventional radiology is a medical sub-specialty of radiology utilizing minimally-invasive image-guided procedures to diagnose and treat diseases in nearly every organ system.)
Liked by Katherine, Alumni Mentor, Dee, Brenda R.
Dear All, I just took the time to call my closest ER .. took some doing but I FINALLY got an answer IF I came in needing an “interventional radiologist” because they needed to “stop the bleeding by ‘plugging’ the blood vessel” .. I FINALLY got the answer that the “interventional radiologists” went home .. could not get an answer as to when! That the ER would have to evaluate the bleeding .. THEN decide if/when to call in the “interventional radiologist” .. hmmm. Frankly I just hope I don’t need one too soon! But at least I now have my answer! Hugs! Katherine
Liked by Dee, Brenda R.
Welcome to Connect @turtle3656. Thank you for posting these useful resources, which a couple of members have also recommended.
Tell us a bit more about you. Do you live with lung disease? NTM, COPD, bronchiectasis? We look forward to getting to know you more.
@colleenyoung and the Rest of the Group!
Hi, my name is Amy. I am currently 48 years old. I have been on the 3 big antibiotics (Clarithromycin, Ethambutol, Rifampin) for almost two years now. My last sputum sample was Dec 19th, 2018 and I was just told that it was positive again. I was wondering if anyone else has done anything if there meds were not helping? I was very interested in what @lauralynn said about her clinical trials where she cleared her NTM after 6 years, plus of being on meds. Does anyone know what drug she inhaled, or any other drug to inhale that will help this go away? I also may need to look to switch my doctors. I live in Caseyville, Illinios, outside of St. Louis by 30 minutes. Thank you for any help anyone is able to give.
@beatitnow Hi Amy, I was on the big 3 for 2 years, 3 days a week with no results. My dr changed me to daily big 3 and inhaled Amakacin and it worked to close my cavities and get rid of the nodules, but some nodules have returned after stopping the Amakacin. Good luck
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