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!
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fransky, actually prefer not to say .. just know it is somewhere I LOVE to go and where I will find joy and serenity in it’s beauty! Thank you for your kind thoughts .. I am looking forward to it! Hugs to you! Be kind to yourself while I am gone and come back for support from the lovely people on our Forum! Katherine
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Of course…and I am sorry to ask. That is private. Enjoy! And thank you again for your support.
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.
I am new to this forum, and I am researching treatments for my husband. He has severe COPD and was diagnosed in December 2015 with MAC. He was taking ethambutol, rifabutin and azithromycin from December until the end of June and was doing pretty well. We were in Florida at the time and drove to NJ at the end of June. Two weeks later his condition worsened and he was diagnosed with mycobacterium abcessus. He has been on IV amikacin 500 mg every 12 hours and imipenem/cilastatin 1000 mg every 6 hours, and azithromycin 500 mg daily for seven weeks, one more week of IV to go. The infectious disease Doctor said he will continue the azithromycin and will add Bactrim when the IV ends next week. We will be returning to Florida, hopefully in three weeks. We live about 30 miles north of Palm Beach. We like his pulmonary Doctor, but he doesn’t have a lot of experience with this type of infection. We are considering consulting with doctors at Mayo Clinic in Jacksonville, FL or at Cleveland Clinic in West Palm or in Westin, Fl. Can anyone recommend a doctor? It would be wonderful to have a doctor we feel confident in. We have yet to find someone. ( Prior to the MAC diagnosis, he had been seeing a pulmonologist at Univ. of Pennsylvania. CT scans showed some nodules that were increasing in size over time. He felt that bronchoscopy was too risky due to the condition of my husband’s lungs, but referred us to a radiation oncologist at Penn. My husband had radiation for “presumed malignant neoplasm” in his right lung in November 2014. We saw the pulmonologist and the oncologist again a year later and CT scans showed some new nodules. They said it was cancer, never suggested doing sputum cultures, even though we said my husband seemed to have an infection with increased mucus and cough. We went to Florida, and a few weeks later he was diagnosed with MAC! ). As you said, Kathryn , it’s important to do your homework. I wish we had gotten a second, or third opinion before my husband underwent radiation on his already damaged lungs.
On this webpage http://mayocl.in/1mtmR63 you’ll find the contact numbers for all 3 Mayo Clinic campuses, including Jacksonville Florida. If you call, they can guide you further about MAC experts available for consult. You can read more about Pulmonary Medicine in Florida here http://mayocl.in/2dsqeeM As several members have mentioned on Connect, the physicians at Mayo Clinic work together. In fact the pulmonary medicine physicians routinely consult with colleagues in Cardiothoracic Surgery, Cardiovascular Diseases, Hematology/Oncology, Infectious Diseases and Rheumatology to ensure all aspects of a patient’s problem are evaluated.
It is important to do your homework as you say. There are a couple of members here who also live in Florida and can share their recommendations. @boomerexpert @Paula_MAC2007?
Thank you Colleen. I contacted mayo clinic in Jacksonville but was told they are not taking any more Medicare patients for at least a year. I am so disappointed! I am so desperate to find a good doctor for my husband.
Diane, if I was sitting in your shoes here is what I’d do. I takes work .. but I’ve done it for my husband .. and I’ll bet you will do it for yours!
1. I would google “Infectious Disease Doctors” and then “Pulmonologists” within reasonable driving distance from your home or whatever you are willing to fly to.
2. Google the name of each. Check into each bio.
a. Check to see if MAC/MAI is ANYWHERE in their area of interest .. papers they have written .. ANYWHERE in their bio
b. Look to see where they went to school. I feel the tougher the school they went to .. the brighter they probably are.
3. If you find more than one
a. call and ask: How many MAC patients has the doctor treated in the past 12 months
b. explain your husband’s situation and try to get him in ASAP
I hope the above helps just a little bit. Don’t give up. I am a great “googler” .. It takes time but it is amazing what you can find on bios by going from link to link. Sending you a hug in this tough time! Katherine
Thank you Katherine. I will get to work on this!
Good for you Diane! Just develop your plan .. and work that plan! You go girl! Good Luck! Hugs! Katherine
Was given the news of having the mycobacterium abcessus at the end of nov. Totally sent me on an crazy feeling i have an infectious disease doctor. Imipenem and amikacin for 2 months . Now on claritromyc, ciprofloxacn anddoxy-cycline 2 times a day. This has been trying but i am feeling better. According to our control disease center they did not know how to treat this disease. Just had another CT scan and do not see the dr for about 2 weeks. Not fond of going out anymore.
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
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.
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
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