I detect a smell even when it isn't present

Is it possible you have had Covid? This is a not uncommon after effect of that virus.
Sue

Hi, Sue. I should have said that I have had this strange conditions for over twenty years. I'm wondering if it is connected with the BE and MAC. I don't think it is, although like many of us, I do have a post-nasal drip.

My suggestion is to seek help from your ENT. I’ve had Anosmia (inability to smell) for more than 30 years secondary to chronic sinusitis and asthma. I don’t know if bronchiectasis can cause the condition but certainly sinus problems can. During the early stages I would also experience smells that weren’t actually there, as you described. They were quite annoying. My current ENT (since 2019) prescribed a procedure whereby people with Anosmia can regain some sense of smell by systematically smelling a series of 4 to 5 strong essential oils (like peppermint oil) on a particular schedule. The procedure didn’t work for me, most likely because I had gone so many years with no smell. But it might be useful for you to look into via your ENT to see if it would help with Phantosmia. Good luck. I know how annoying this is.

Yes! I have Brochiectasis and I mostly smell exhaust fumes, but sometimes also smell cigarette smoke and mildew, that no one else can smell. I've told my GP about it, but she doesn't really have any idea's. I will reach out to my ENT, to see if he has an idea of what can be causing it.

I have bronchiectasis as well and in testing for second lab to verify my first NTM diagnosis. About 5 years ago I started with hypersensitive smells, perfume, cleaners, laundry detergent , etc. Sometimes impossible to eat in restaurants. I used to love these smells! I have autoimmune issues now and doctors in New Orleans are in new stages of treatment for this. . Taking Symbicort and saline neb and using an Accapella. These coughs that I am trying for sputum lung clearing are hard on my right eye. Last year I had intercranial surgery for aneurysm and AVF in rt dural area and have some eye problems. Does anyone know how I can clear without producing so much on my head??? Headaches are worse as well. Dr appt for emu rt eye is a long time from now.
I hope your smell sensitivity and lack of smell issues get better for you both. Hope all are having a Happy Easter! Carol B

@cmb1 ... Sorry to hear that you have difficulty coughing up mucous without causing pain in your head and eyes. I have found that lying down for postural drainage with my head cushioned helps. There are also head bands for headache sufferes that might give you some relief, but changing position and supporting head all around if necessary would be my first suggestion. I found that zinc supplement helps with GERD treatment to decrease the airway sensitivity. Be good to yourself and find some comfort.

Hi Carol, I am 68 and live in New Orleans too and have had similar symptoms off/on with sense of smell for past 10 years. I was diagnosed with bronchiectasis last August which I didn’t even know I had, a CT scan of my kidneys showed it initially. A CT was done recently as I contracted a difficult to treat double pneumonia while visiting Costa Rica in February. Right now I am awaiting results of 3 sputum cultures that were done over 3 days for possible NTM. Are you happy with the treatment you are receiving in New Orleans? If so, may I ask who your pulmonary physician is? Hope you are able to find a way to relieve the pain in your eye so you can comfortably do you clearing exercises 🙂 Judy F

Hi Judy. I am being treated in NO through Ochsner. Due to wanting an appt ASAP after CT results, I went to a Westbank pulmonologist that could see me sooner. Then I saw an older doctor on the Eastbank . I can give you the names on separate text. One was set on it being MAC by sight and showed me details of CT followed by a few tests; the WB doc was a little less sure and ordered a second sputum test in case first lab was contaminated. I think this is common. He seemed a little more easy to follow through better. A little confusing as both docs have different methods. I am researching for a MAC specialist now. There are a few to choose from just in case next test is also MAC positive. For 69, I am surprised about all of this as I am not very short of breath. How is your breathing going now?? It sounds like your sputum tests have been more comprehensive than mine. Like to find out who your doctor was too and wondering if you have seen a pulmonary doc. I had bloodwork done that showed my immune system was low and am receiving some therapy for that. I think the next step is an infectious disease doctor as the immune specialist said they were good if you undergo triple antibiotic therapy for MAC. Hope you are back on your feet after the pneumonia. Thanks for reaching out.

Hi Carol, Thanks for getting back to me. I do think that I now have some shortness of breath after having the pneumonia but it has not made an impact on walking, etc. just need to catch my breath occasionally but I am active no problems. I first saw an older Dr at Oschner August 2021 when the bronchiectasis was noted on the CT scan on my kidneys (all of that was fine). He ordered another CT just for my lungs and it confirmed the bronchiectasis, there is a “tree in bud” sign and other BR signs. What started all of the newest round of tests with a new & younger pulmonary Dr is the R pneumonia that was hard to resolve with at first taking Zpack and Amoxiclav for a week then a week later to the ER with PN now in both lungs! Given levaquin at that time which seems to have worked. I wish they had taken sputum samples when I had active pneumonia but I didn’t think to ask for them. What tests did you have to diagnose your immune system deficit? I think I must have something like that too since last year I had a raging UTI that took months to resolve w/o antibiotics and then this year I had a breakthrough COVID infection in early January and then the breakthrough pneumonia in mid-February through mid-March. Frustrating since I have been vaxxed to max 🙂 Can we share Dr information on this site? Otherwise, I am happy to communicate with you directly if there is a way to share personal contact info. Thanks again, Judy

Seems like warm Limburger cheese might have a place in this discussion.