NTM Northwest Support

A Pacific Northwest support group for sufferers of Nontuberculous Mycobacterial (NTM) Infections and Bronchiectasis

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#1 2016-06-03 22:46:50

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 191

OUR STORIES

CYNTHIA F:  BORN 1952; DIAGNOSED IN 2011 AT AGE 59.   

A 1952 boomer, Cynthia earned a Masters of Environmental Management from Duke then spent two decades in the temperate rain forests of Southeast Alaska. She had an interesting job path including various fishing jobs, wilderness timber work, public radio station operations director, assistant director SE Alaska Conservation Coalition and business manager of a marine shipyard.  She left Alaska and 120 inches annual rainfall behind for the less dreary climate of Bellingham, WA.

She has been an environmental activist since the 70's and currently serves as chair of the NTM NWest support group. Her focus within the group is research and community action. She is an avid birder and reader and walks an hour most days.  Her lung clearance regimen includes using an Aerobika daily;  flutter valve and nebulizer for hypertonic saline solution several times a week.

Symptomatic since 2006, Cynthia was diagnosed in 2011 w/MAC and fairly advanced bronchiectasis following a bout of persistent pneumonia. After 12 months on the big three antibiotics her cultures were still positive so her local pulmonary doctor referred her to National Jewish Health.  A week of testing indicated Sjogrens syndrome and silent GERD. Since then she has slept at a 45 degree angle.  Her meds were increased slightly and after three more months of drug therapy she was culture negative.  Eight months later she underwent a successful surgical right middle lobectomy, which led to greatly reduced production of phlegm, less fatigue, and improved lung function. Cynthia also has osteoporosis and a small, but pesky drug resistant colony of stenotrophomonas maltophilia, a gram negative bacteria.

BASEY K :  BORN 1974; DIAGNOSED IN 2016 AT AGE 42.   

Still working on figuring out which strain of NTM. I have had a vague Bronchiectasis diagnosis since 2012 but was not advised to do anything about it. The past few years have each brought with them a case or two of pneumonia but it wasn't until this past November/December/January when I couldn't get over the illness with three rounds of 10 day antibiotics that I began to understand more about what lies ahead. I am sad and scared :(

Began reading as much as I can find online about Bronchiectasis and NTM and trying to educate myself. Have logged on to a few forums but have not been ready to post my story because I am still figuring this all out. I recognize that I have it pretty good - there are lots of people posting who are far sicker than me. However I am a Mom to two young boys, ages 5 and 6, and was/am already prone to anxiety. Yikes!

I feel very scattered right now. Am trying to learn more about how to address these lung issues with nutrition. Learning about all of the tests necessary and doctors appointments and learning that I need to make time in the day to do Acapella lung clearance and postural drainage. All of a sudden I am also spending a lot of time at the gym doing cardio and gentle yoga as the doctors "prescribed" exercise which I wasn't particularly diligent about previously ;)

These past few weeks I have discovered that it is beyond helpful to hear/read other people's stories with NTM and/or Bronchiectasis - In addition to learning empowering details on self-care, it minimizes the isolation I am feeling with this new diagnosis.

Have my first appointment with a local ID doctor soon as well as Dr Kevin Winthrop at OHSU in early June.
I look forward to meeting you all virtually and in person...Thank you for being here!


DEBBIE___:  BORN 1964; DIAGNOSED AROUND 2011 WHEN 47ish. 

At the time I was considered young also for this charming diagnosis!  :)   I had the same story of recurring pneumonia which led me to a pulmonologist.  I tested positive in my sputum and also had a bronch and tested again positive.  It is a scary thing.  Marge recently contacted me asking me how I was doing....   I haven't been in much contact lately because I have been doing so WELL!  She thought it would be good for me to share that with the group because we are all in different stages at different times!  :)  After being diagnosed I was put on the 3 medications for about 15 months.  IMMEDIATLEY I noticed results!  I guess I was very lucky to respond so well. I referred to it as "someone turned the faucet off".   I had been seeing Dr. Winthrop at OHSU (like many in the group) he suggested the more aerobic exercise rather than yoga.  I started Jazzercise and honestly I think that is why I am totally symptom free and I hope to stay that way.    I don't even see my pulmonologist anymore (which I should touch bases with him once a year)...   Keep positive!  I haven't read all the emails yet but I'm sure you are getting a lot of words of wisdom from this fantastic group of people! 


PATTY ___:   BORN ____; DIAGNOSED IN 2016 AT AGE____.

Just wanted to give an update on my progress.  I have been on the "Big 3" for 4 months now and I think I am one of the lucky ones to have had no reactions to the drugs, except the orange pee, my sister calls me popsicle.  I was so scared to make this jump into the meds as I never felt sick.  I was in the mindset of if it's not broke, don't fix it.  I guess I am broken, just don't know it.  I hope and pray my good health continues.  I have always exercised and ate well.  It doesn't make my duration on this nasty stuff shorter though.  :(  I will have a CT scan in July after 7 months, hopefully will see some improvement.
I think I have felt guilty about feeling so good as there are a lot of other stories that are not so positive. My friend who was going thru a different issue, told me to speak up and let others know it's not so bad and there is positive out there with this stupid nasty unknown disease. 


MARY C :  BORN 1930; DIAGNOSED IN 2003 AT AGE 73.

I think I am the eldest in the group and feel I had the disease for a long time prior to diagnosis. I was under care of pulmonologists for years as I had much scarring from multiple bouts with pneumonia when an infant, I began having episodic hemoptysis around the late nineties with a couple of ER visits due to that so learned about how to handle it and I have written a short blog about it. In Arizona where I resided for 22 years - I was under the pulmonary care of the Mayo clinic at Scottsdale so when I relocated back to the Portland Or area, I feared I would not be able to have that level of expertise available, but at OHSU, Dr. Winthrop is excellent. The first pulmo I tried here knew nothing. So most have dealt with the lack of knowledge in general pulmonology practice but hopefully as more research accumulates - that will change. I credit my longevity to having lived a very active life style, a sports enthusiast, yoga, swimming, tennis, golf, hiking, etc. --now down to trying to walk as often as possible and doing some rehab routines, I took pulmonary rehab in 2003 and hip rehab 2011 after an accidental fracture.

If there is anything I can be helpful with, just msg. BTW since so many of us go to Dr. Winthrop I think of us in this area as his harem, LOL.


JEANNIE___:   BORN ___ ; DIAGNOSED IN 2015 AT AGE____.

Hello everyone - I was waiting to respond until today, as today marks six weeks from my bronchoscopy.  No positive sputum tests.  Pretty soon after I started the 14 day course of amoxicillin on January 1st I began feeling so much better, and now I am almost normal.  I have a bit of phlegm in my throat, a runny nose in the mornings and a very superficial cough 2 - 3 times a week.  And that's it.  Dr. Horan believes these symptoms are due to the bronchiectasis.  She advises me to continue the Acapella valve and exercise regularly and she'll see me every six months.  She suggests I strengthen my immune system and do my best to stay clear of germs.  I guess any illness can exacerbate the bronchiectasis, especially the flu.   This has been a long journey.  A couple of physicians have suggested that it would have made more sense to follow an amoxicillin regimen back in October when then z-pack failed, and that could have been the end of this.  I am preparing a letter to the radiologist who read the CT scan and am going to copy the Polyclinic physicians so this doesn't happen to someone else.  I have learned that only 50% of cases that show bronchiectasis and multiple nodes end up with a MAC diagnosis.  I will provide the letter if any of you are interested.   I have learned a lot, about myself and about the disease.  I have enjoyed getting to know you all, and have so appreciated your kindness, your wisdom, your experience and your support.   Please keep me in the loop about your upcoming meeting - it would be nice to put faces to names if I can attend.


NANCY R :  BORN 1944; DIAGNOSED IN 2012 AT AGE 68.

NTM NWest librarian    The short version of my history:  I was treated for oral cancer 8 years ago with great success but lots of side effects which are manageable. (Hospitalized twice because of antibiotic side effects.) Then January 2012 my MAC diagnosis was confirmed with sputum cultures after working on a roofing project (lots of dusty moss removal, no mask).  I have been avoiding the Big Three antibiotic program, opting instead for natural medicine. I have chosen to treat my NTM naturally for as long as I can, so will share what seems to be working for me:
 
First, I found a naturopath who put me on some supplements (Similase) to help me absorb the nutrients from my food and several other things like zinc, magnesium, etc. had me eating specific foods like avocados, crab omelettes, etc.  Within a week I was feeling much better, still lousy, but better.  (I was crying when I first visited her, I was feeling so lousy and tired and afraid!)  She really helped me in the beginning.

Three other natural treatment choices have been very helpful to me:

First: Jin Shin Jyutsu (JSJ) which is Japanese medicine using points on the body similar to acupuncture.  In fact, I just returned from a treatment in Edmonds by an JSJ practitioner and I had MUCH phlegm come up right after treatment.  When my chest starts to ache, I know it is time to work hard on draining the phlegm and this has helped.  I don't understand the science, but I have an open mind and have seen it work on my body.

Second:  Chinese herbs – The first year of MAC I was drinking (awful tasting) tea 3 times a day.  It helped reduce my coughing some, and I had more energy after a few weeks.  The Chinese Dr. said the tea is strengthening my body so the MAC bug can't totally take over.

Third:   The Abascal Way diet helps quiet inflammation (mainly veggies, fruits, proteins, no alcohol, no gluten).  I figure this diet helps anything that is inflamed, which includes the lungs no doubt.

Update March 2021

I have been very lucky this past few years: my NTM symptoms have been fairly stable and I have NOT seen my pulmonologist for almost 4 years.  She asked me to return whenever symptoms got worse, but I don’t believe they have worsened enough to warrant a visit. (My coughing and amount of sputum have only slightly increased.) Whenever my upper chest begins to ache, I make sure I push walking up a gentle hill, and that seems to help me clear the sputum and the discomfort goes away.  However, I do feel like I have a “potential dark cloud” over my head at all times, knowing that NTM symptoms can worsen quickly and dramatically.  But all in all, I am grateful and am living an active rewarding life. I remarried 1 ½ years ago, we moved to a smaller more manageable farm and I love the quiet farm life I am now living.




GERI P  : BORN _____; DIAGNOSED IN ____ AT AGE ___.

I am a member of this support group but I am the quiet one.  I read all the messages though.  I live in Reno NV and recently went to OSHU to meet with Dr. Winthrop.  My brother lives in Vancouver WA and so it would be very convenient to see Dr. W instead of going to Natl Jewish every year.  However, I did want to comment on the Bronchiectasis subject.  Dr. Huitt from Nat'l Jewish has always told me to "Never" take Azithromycin for colds, bronchitis etc.....because this is one of the Big 3 meds used for treating the mycobacteria NTM and overuse would make a person immune to the med when needed to treat the NTM.


JANE D :  BORN 1940; DIAGNOSED IN 2012 AT AGE 72.

I grew up in Southern Indiana and was graduated from high school in Evansville before moving to California.  I attended Pasadena City College for two years, transferred to San Jose State College and received a BA in journalism in l962.  After working as an editor (also marrying and having two children), I returned to school to obtain a secondary teaching credential at Long Beach State College.  I taught high school English for a year before moving with my family to Northern California.  I taught 7th and 8th grade, became an administrator, and earned my masters degree in education.  I served as a middle school principal and then returned to the classroom where I helped start and teach in a multiage program for grades 2-4 before retiring in 2000.

Several months before I was diagnosed with MAC, I had been experiencing "out-of-breath" or "loss-of-energy" attacks and really thought it was my heart.  My regular caregiver sent me for a chest x-ray and then referred me to a pulmonologist.  He examined me and had a therapist give me breathing tests. He ruled out some things, but told me to come back in a couple of months for a follow-up.  He then did a bronchoscopy, which showed that I had bronchiectasis and the lab work revealed MAC.  But at FIRST, it was suspected I had TB and our local Public Health was notified. They were at my house in no time, even before the doctor got the results.  I was given the usual drugs for TB, which I took for about two weeks until TB was ruled out and MAC confirmed.  Then the drugs were revised to ethambutol, rifampin and azithromycin. I took them for several months and there was no improvement, so the pulmonologist sent me to an infectious disease specialist who dragged his feet for several months waiting for lab results and doing a bit of research. He stopped the three drugs during that time. Finally, after learning a lot more through my own research, I asked him to refer me to National Jewish Health, where I spent two weeks in November, 2013.  (Turned out that not long after that, both he and the pulmonologist I had seen left their practices here with no replacements in our area.) 

I became Dr. Daley's patient and had a great experience at NJH. I've taken the three antibiotics most of the time since then, always having my vision and hearing monitored, and tolerating the drugs well.  One of the things that is troublesome for me is my extreme weight loss and the inability to gain weight due to loss of appetite and energy. I'm still functioning pretty normally, but quite content not to do too much at all.  I've cut back on a lot of activity -- travel, volunteering, etc.

After a long time taking the three antibiotics, I felt I should return to NJH and did so in October.  I had a few tests and a conference with Dr. Daley who compare the last two CT scans (some areas better, some worse).  He wanted me to be more diligent in using the Aerobika, adding a compressor to generate a saline solution.  He didn't change my meds and I really didn't feel as satisfied as I hoped I would with the visit. 

The latest twist --
About six weeks ago, I had cataract surgery and afterwards noticed that the vision in that eye was distorted by a shadow on the right side.  My ophthalmologist was unable to see a problem after considerable testing and examination, so he has referred me to a retina specialist in Santa Rosa.  We had discussed the possibility that the problem was not connected to the cataract surgery, but to the use of ethambutol; but he felt like we need a second opinion to rule out anything connected to my surgery.

In the meantime, I contacted my GP caregiver here (who is in touch with Dr. Daley at NJH), as well as left a message for Dr. Daley.  Lo and behold, my local doctor and Dr. Daley actually conferred quickly (unusual!) and told me to stop taking the drug, just in case.   I went to the retina specialist who found nothing pathologically wrong, so we've concluded that it must be the drug.  I'm in a holding pattern again while my GB and Dr. Daley get together and decide on further treatment.

It's been a continuous struggle of being assertive to get the help I need and waiting for appointments and results.  Our doctors are overwhelmed, it seems

I'm very interested in experiences any of you have had with vision problems resulting from ethambutol, as well as your suggestions for general health practices that have helped you AND successful practices that you have discovered for gaining weight.


JUDE R : BORN 1950; DIAGNOSED IN 2000 AT AGE 50.
I was a 1950 baby boomer and grew up in Washington, DC. Moved to the NW after college. Lived in Portland in the 70's, moved to Seattle in the 80's. Was the CFO at Channel 9, the PBS affiliate in Seattle, for 10 years. Lived in Tasmania for 4 years where I built a stone and glass house on 50 acres of land outside Hobart with only one right angle in it. Have had lots of adventures like sailing from Seattle to Hawaii and kayaking in Greenland, while living on a sailboat that sailed from Iceland.

I only discovered I had MAC 16 years ago (age 50) when I got a routine X-ray as part of the immigration requirements for Australia. I was asymptomatic for nearly 10 years, during which I did 1 year on the Big Three, even though I had no symptoms. The doctor was an infectious disease fellow who worked mostly with HIV patients. About 6 years ago I caught a flu-like something and that seemed to trigger the onset of symptoms with the MAC. I have also been diagnosed with bronchiectasis. I had pneumonia once several years ago, after flying from Hawaii, and was on oxygen for a few months. Mostly I continued doing my adventures anyway.

In the spring of 2015 I was diagnosed with HPV related throat cancer and was treated with chemo and radiation, and ended up in the hospital for 5 weeks, coming home with "pneumonia". Unfortunately, the treatment suppressed my immune system, leaving me with what my pulmonologist, Dr. Horan in Seattle described as 1,000 times worse than before the cancer. So now, I have been on oxygen since October, 2015. My doctor wants me to do the Big Three but i haven’t agreed. I am not convinced the odds are in my favor and that the treatment wouldn’t destroy my own system's natural immunity which has been handling MAC pretty well up until now.

Updated March 2021: I did a year’s worth of the Big Three finally, yet it still didn’t clear the MAC. So I took a break.  I’ve had one episode over the past few years of coughing up what to me was significant amounts of blood while in Australia, where I landed in the hospital overnight. Turned out it was an irritation of the lung that was treated with a course of antibiotics. Another time I had chest pains that sent me to the ER for another overnight.  Neither turned out to be serious, just a bit scary and definitely educational.

In January 2020, I started the Big Three again, because I tolerated them so well. Dr Horan acknowledged it was not to clear the MAC, but to hopefully slow it down. So far so good. I have now been on them over a year, and the disease has not progressed. I will stay on them indefinitely or until I say “uncle”. I have decided to try the inhaled amikaycin despite my concerns about the side effects of coughing up blood or losing your voice, both of which are reversible. I’ll give it a go and see but haven’t started yet. Overall, I feel I have declined a bit over the past few years, mostly in terms of lung/aerobic capacity. I am still using my stationery bike for 30 minutes at a time and doing yoga, acupuncture, meditation and taking vitamin D religiously. I turn 71 soon and have been dealing with this disease now for 21 years.



MARGE G :  BORN 1938; DIAGNOSED IN 2000 AT AGE 62. 

At the time I was diagnosed I was working as a Document Examiner for a private investigator, attorneys, companies and individuals.  When I had time would teach Handwriting Analysis classes at a community college.

In 2000 I came down with a chronic dry cough. After several visits to my GP he recommended I see a pulmonary doctor.  One look at my x-ray he felt I needed to have a bronchoscopy.  The result was MAC disease and he said I will have you cured in a year.  A year and a half later he said he could do no more and he recommended I consult an ID doctor.  For the next 3 1/2 years these two doctors consulted with each other on my case.  By this time I was getting sicker and sicker.  When I would tell the doctor this I would receive no reaction. 

I discussed the situation with my GP who informed me there was a new ID doctor at OHSU and said he would make sure I would be able to consult with the new doctor, Kevin Winthrop. My first visit I learned more in an hour than I had in 5 yrs. He changed the medications, which I realized later I had been given the wrong meds all this time. I was also told I had bronchiectasis which I had never been told this.  He later recommended I have surgery to remove 2 sections of my left lung, so after a consult at National Jewish I had this done and was able to go off meds 4 mo after surgery.  I said it gave me my life back. I have had my ups and downs. I will begin to feel the symptoms back, CT will show a little worse and we discuss meds again, but then decide to wait, then I will start to feel much better.  I am grateful every day for what I can do.


KELLY G : BORN 1975; DIAGNOSED roughly 2015 by self AT AGE 40

Married with a 7 year old son, I live in a pretty rural location and perhaps I'm the only one here with this illness.  My story is a long complicated, awful angering one…as it sounds like is par for the course with NTM.  I’ve been fighting this almost 2 years, and just now began  treatment in 2015.  I am (was, lost my job due to all this) a Medical Technologist (hospital lab worker, probably did NOT get this from my job as I do not work in the microbiology department), with degrees in Medical Technology, and Microbiology.  Which has been ever so wonderful as I have had to do the footwork in diagnosis, researching, etc  what the heck is wrong with me.  I am able to read the journal articles, do the research, understand the lingo, and know what’s going on.  Granted, I’ve also learned a whole lot more.  As my husband says now, ‘so basically all you need a doctor for is to order the tests and write the prescriptions?’, basically!  It’s been a very sad state of affairs.


Summer of 2013 I started feeling chest pain – thought pulled muscle as I regularly worked out, I was only 38, so I eased off, then asthma kicked up, again, no big deal, it happens several times a year.  Then I started coughing up blood – big deal, got an appt with my pulm (same one I still see, and the one I have seen for years regarding asthma) within a few days (no didn’t go to er, when you work in the hospital, you don’t go to the er, lol, looking back wish I had), a STAT CT showed MASSIVE RU lung abscess, with others, cavitary lesions, nodules, ground glass opacities (those were both lungs), all sorts of good things.  Labs, cultures, bronch, first lung biopsy (it was even sent to Mayo Clinic) (however poor specimen obtained, little, and most likely from old necrosis) were all negative and non diagnostic.  Then the referral to Pulmonology @ Oregon Health Sciences University (OHSU) in Portland, OR, same things, labs, bronc.  It was all basically negative with a diagnosis of Community Acquired Pneumonia (which they had diagnosed and dismissed me before even seeing me), you’ll be fine they said, see you in 3 months.   (I eventually got hands on my medical records from there late last summer…low and behold there was a positive AFB culture – they didn’t even order speciation, or acknowledge the report, in addition to other sputum labs they never incorporated or saw the other fungal/micro labs let alone put into my chart).  Months went by, they said I was fine, I said I wasn’t, repeat CT’s, showed continued and new cavities, OHSU lied to me and said it one of those CT’s was all clear, those then abscessed, more hospital stays, antibiotics, a 2nd lung biopsy at OHSU this time, inside the abscess was Aspergillus fumigatus.  BUT all they cultured was the fungus inside the cavity, and no other lung sample cultures, infuriating, and they supposedly took out 2 abscesses!  OHSU said everything was caused by the fungus, which made absolutely no sense, and no proof to back up, no evidence.  They never even thought to send me to ID dr. 

At that point, I left OHSU, and returned to my pulm in Walla Walla.  A referral was made to NJH, to try to find out what was causing all this lung disease.  2 weeks there, left with no answers, except the fungus was not the cause!  Became very sick again the end of last year, in trying to get bronch results from NJH, I found M. abscessus on a culture report from there, nobody at NJH told me, any of my dr’s about, I was BEYOND LIVID, and let them know publically how disgusted I was.  They followed up with me at once, their feelings it could be a contaminant.  However, sputums were now growing 2 different MAC isolates many weeks apart, M. avium intracellulare, and M. scrofulaceum (which NJH is lumping all as MAC, and ignoring the M. abscessus).  After my research and providing papers, proof, etc to pulm here, she sat for 2 months deciding if she should treat me…saying things like ‘I won’t let anything happen to you’ as my CT worsened, symptoms worsened, she has also told me ‘you just need prozac’, (a new research project, will Prozac stop the growth of NTM in the lungs? HAHA) and other such wonderful things, she doesn’t seem to understand why my shortness of breath at times gets so bad (Oxygen down to 80%), or understand the coughing up blood, or chronic pain, and yet she is a pulmonologist!   Along the same time, she told me she had tried to get a hold of NJH, a statement I now question, as once I talked with Dr. Kasperbauer @ NJH, that was unclear that ever happened.  My pulm and I also discussed seeing Dr. Winthrop (@ OHSU)  (as I have seen his name all over my research, and he is close Portland vs. Denver (we had to drive to Denver, a 2 day drive, not allowed to fly due to the lung disease))…and get this, she trained @ OHSU, and KNOWS him personally!!!…she kept telling me month after month, ‘I will call him, tomorrow’, well that never happened either, over and over!!! 

Eventually after my badgering of my pulm and repeatedly having NJH try to get in touch with my pulm, we got treatment started, at 3x/week for rifampin,azith,etham,inhaled amikacin.  After a month and feeling worse still, I asked my dr about increasing to daily, per American Thoracic Society standards for Cavitary Disease….she said no, benefits aren’t worth the risk…um benefits of getting better? and all of a sudden she’s an expert, after she tells me NTM is way over her head.  So…I send another note off to NJH to get them involved again…and am now on daily therapy, and I’m sure my pulm is not happy.  I see her in a week.  We are sure it’s a power trip/ego thing, and she has a way with rude comments, poor bed side manner, but that’s small town living, you kind of get what you get!  I’ve thought about switching Pulm dr’s to the Tri-Cities (an hour away from Walla Walla) but nobody stands out on-line, and it would be like throwing a dart.  If anyone here can recommend  pulm in the Tri-Cities, WA, I’d love to  hear about them!

So here I am in 2015, now 40, disabled.  Of course, not the way you expected life to go!  Currently it is my original massive abscess that is infected again.  The CT in March was freaky looking, almost like there could be more fungus in it as well.  The second lung biopsy was from the lower right lung where they took out a chunk.  My massive ‘hole’ abscess that is reinfected is in mid/upper right lung now.  They’ll do a CT in October and we’ll see what it looks like.  I’m beginning to think, just cut the whole area out if I’m going to be playing this reinfection game, and if I will just keep harboring pathogens.  But the way my pulm thinks, she’d rather I stay sick and not take a chance on anything.  NJH doesn’t seem big on having me come back, although I keep asking, as they are aware the difficulties I have with my pulm.  They seem to respond via e-mail as I question my treatment at home.   The left lung has shown disease in the very beginning of the illness, and again just this March, but just via ground glass opacities, not the abscess/nodules/cavities that the right lung has.

How did I get this, we’ve not been able to figure it out, as also seems pretty normal.  It appears I have many likely factors.  I am tall and thin.  Apparently I have acid reflux, as NJH told me, I never had any symptoms and all my barium imaging was normal.  Their pH probe test was abnormal, thus they diagnosed acid reflux.  But we think also lending, or more likely, we were at a water park a few months before I presented with that awful first CT, and wonder if that contributed.  Also where we live, we have very bad dust storms/thunder storms, and again several months before the CT, I was caught outside in a particularly bad one, did I inhale something that way?  Of course, all immunological, and auto immune testing are normal, as the alpha -1.   

Doing the best we can, every day battling someone, something, some corporation!  I look forward to expanding what I can learn through you, your experiences and knowledge.  Thank you for letting me tell my story.


LAURA V: BORN 1961; DIAGNOSED IN 2015 AT AGE 54.   

My lung issues began in January, 2010 with symptoms of extreme fatigue and loss of energy.  I saw a pulmonologist in McMinnville, Oregon and from an X-Ray, he noticed calcified deposits in my lungs but thought they had been there since childhood and was not concerned.  I passed all the breathing function tests, tested negative for TB and was sent home.

December, 2013, Having moved to Tualatin, OR, saw another pulmonologist for chest pains. X-ray, breathing tests, was given an antibiotic for pneumonia. Chest pain continued; pulmonologist moved away.

May, 2014, I coughed up a large blood clot and my GP ordered a CT scan and referred me to a pulmonologist, Dr. Kelly with Tuality in Hillsboro, OR.  Despite having the CT scan he ordered an X-Ray. He diagnosed bronchiectasis, prescribed Advair, and sent me home.  The CT scan had revealed a ½” hole in my right lung but no one told me.

August, 2015, Coughing up blood clots, experiencing extreme fatigue, wheezing, chest pain, night sweats and weight loss (104 lbs.), I called The Oregon Clinic in Portland.  I was told I needed a referral from a GP, then a 2 months wait to see a pulmonologist.  In the meantime, I got another CT scan then forwarded both CT Scans on to the pulmonologist at TOC.

October, 2015. Dr. Jason Wells’ office, pulmonologist at The Oregon Clinic called my GP and scolded him for not escalating this patient (me!)  Dr. Wells called me in and showed me a comparison of the two CT Scans (2014 and 2015).  The ½” hole had grown to a 2” hole in just 15 months!   The infection had spread throughout my lungs which suggested NTM bacteria.  However, I would need to do a bronchoscopy and wait 2 more months before a diagnosis could be confirmed.  They assured me that this was a slow growing bacteria and 2 months would not make that much difference.

Feeling panicked, I called a Natural Medicine Doctor, Chris Meletis in Beaverton, and asked him to come up with a “natural immune boosting” regimen that I could start right away to help fight the disease.  He did some research and said the issue with lung bacteria is that bugs burrow their way into a thick layer of bio film in the lungs, which is very hard for antibiotics to reach, hence a normal 10-day antibiotic’s ineffectiveness to kill this bacteria.

November, 2015, I started a daily regimen to boost my immune system and break down the bio-film so the Big 3 could work more effectively when the time came to begin taking the antibiotics.

In the meantime, I had a bronchoscopy to culture for speciation and sensitivity testing of bacteria. So now we were 6 years, 4 pulmonologists, 5 GPs, 6 X-rays, and 5 CT Scans into discovering what is making me ill.

January, 2016, after having been on the Natural Immune Boosting Regime for 2 months I began the Big 3…Azithromycin, Rifampin and Ethambutol. Morning begins with mega dose of probiotics and milk thistle for liver.

Diet:
No gluten, dairy, soy, sugar, alcohol, absolutely no processed food whatsoever
Oats, Quinoa, Millet, Rice, Potatoes, Yams, Squash
Poultry, Lentils, Fish, Beans
Olive Oil, Goat Cheese, Coconut Oil
Lots of Organic Fruits and Vegetables
Green Tea, lots of water with lemon
Occasional Dark Chocolate or Decaf coffee
Homemade cookies with banana and maple syrup (I know - it is still sugar)

After 3 months of the Big 3...gained 6 pounds, feel good, no chest pain, breathing deep with no pain, can work full time.  No brain fog, can walk anywhere, ride bike, etc.  Still occasional hot flash.  Recent chest x-ray and kidney/liver function (blood tests) show the disease has stabilized in my lungs and my kidney and liver numbers are excellent! Dr. Winthrop at OHSU has recommended a PICC Line of Amakacin; 3 times a week for 2 months but I am waiting for other tests.

2009 seems like a lifetime ago when I composted my vineyard which is likely where I ingested the bacteria.  I have since then sold the vineyard and wine business.


LOTTIE (Charlotte) D:  BORN 1940; DIAGNOSED IN 2011 AT AGE 71.   

2009 – 2011 Occasional hemoptysis

In 2011 Another episode of hemoptysis; trip to E.R.; diagnoses: bronchiectasis.
Pulm (Pulmonologist) performed bronchoscopy.
National Jewish Health Lab confirmed MAC (mycobacterium avium complex).

Pulm and IDS explained and encouraged the BIG 3.  Being asymptomatic, I choose to learn more, beef up immune system, and wait with the medications.

2014 Sought out Dr. W. (Dr. Kevin Winthrop) who also recommended BIG 3 therapy.
Dr. W. informed me about this great NTM – Northwest support group.  Through their support I gained knowledge and confidence.

2014 Started two of the BIG 3: Azithromycin and Ethambutol.  After nine months added Clofazimine.

2015 After a total of one year of medication, a sputum test revealed disease suppressed.

2016 Maintenance: Daily lung clearance with flutter valve.  Some exercise, eat and rest well.
Stay supportive of this great NTM – Northwest support group.


LYN B:  BORN 1934; DIAGNOSED 2002 AT AGE 68.  I was diagnosed with unnamed “lung disease” in 1995, with bronchiectasis in 1997, and finally with MAC in 2002. I think I’ve had a pretty good run, as I didn’t develop serious symptoms until about ten years ago, in my early 70’s. 
 
Currently my bronchiectasis is called “advanced” by Dr. Winthrop.  My MAC may be in remission since it didn’t stain, according to Dr. Horan, on my latest sputum test.  I also have pseudomonas which has recurred often and resisted antibiotics.  My lungs are scarred from histoplasmosis, most likely acquired when I was a child.
 
I grew up on a farm surrounded by cornfields and played with animals and in and out of barns and outbuildings. I studied at University of Illinois and got a bachelor’s degree, then in my 50’s went back to school at Oregon State University and got a master’s degree in counseling.  In 1956 I married a mechanical engineer.  We had four children.  Our family lived for four years near London, England in the 1970‘s.  I enjoy reading and quilting.
 
As an infant I had severe pneumonia. Growing up and as a young adult I had bronchitis a lot; my mother used to say, “Everything you get goes right to your chest”. I’ve had mild pneumonia several times as an adult. My mother had asthma and lung issues and my older sister has COPD.
 
My treatment for the lung diseases has been minimal, other than the usual frequent antibiotics to treat whatever ails me currently.  None of them seem to do much good anymore.  Both Dr. Gemino (in Corvallis, Oregon) and Dr. Winthrop have urged me to go on the “big three” antibiotics, and I am glad I resisted that since the MAC may no longer be the major problem; bronchiectasis is, and there is no treatment for that.
 
My biggest problem is coughing -- I cough severely several times a day and often in the night.  Soon I will be unable to attend concerts, programs, even dinners out with friends, because my cough embarrasses me and troubles those around me.  My only other symptom is a “fatigue day” once a week or so, when I feel tired and depressed.
 
I just moved from Oregon to Colorado, to be near my family and medical care.  I have a wonderful pulmonologist there – Dr. Diana Breyer – and will be about 60 miles from National Jewish Hospital in Denver.  

5/13/2017 UPDATE FOR LYN B: NEW DOCTOR, NEW REGIMEN

Yesterday I saw my new pulmonologist. Two words it’s better not hear about your own disease are advanced and complicated. I’ve heard both.

High points from today’s clinic visit:

          Positive:   can’t think of any… oh yes:  I am to inhale Albuterol when I have a prolonged coughing spell and am encouraged to use it before going out to prevent coughing. This may help.

          Negative:  too many new procedures.

                    Inhaled saline again, 2X /day

                    Flutter valve 2 – 3 X /day

I will need a 40-hour day to get all the medical procedures done Winking smile.

The record of the breathing tests I have at each clinic visit show that my lung function is deteriorating.  Bronchiectasis is the major problem and it is not curable.  Although my original bacterial culprits, the non-tubercular mycobacteria, are possibly no longer growing, they are still in my lungs.  The bacteria Pseudomonas, which is very, very difficult to eradicate, is active.  The hope is to suppress it.  Apparently the strain I have is resistant to Tobramycin, the drug I’m currently inhaling.  Since Tobi has some serious side effects, I will discontinue it in two weeks and probably go on another strong inhaled antibiotic.  Also may begin Azithromycin 3X/week.

Dr. Landmeier is proposing a treatment that my previous doc, Breyer, had also considered:  hospitalization for a thorough lung clearance and installation of a pic line to deliver IV antibiotics twice a day for a long period of time.  Dr. B said this was a “last resort” and Dr. L says it is better to get it done now than after I have to go on oxygen and am incapacitated.  I hope not to do this but I will consent if necessary.  I see Dr. Landmeier again mid-June.  He is also hinting at another consult with National Jewish in Denver.

DONNA L.:  BORN 1960; DIAGNOSED in 2014 AT AGE 54.

I was raised on a farm. A worker. I have accounting background. Currently a Entrepreneur.
I worked for a manufacturing company. Dr said paint department more than likely caused my MAC and bronchistis. Misdiagnosed for over 10 years. Three years ago finally they figured out the root cause. After the big three meds for 18 months I was taken off meds now after 6 months symptoms are back. Waiting on culture to receive prognosis. Sick. Will go back to Mayo clinic first week in June. Now my insurance company is refusing to cover costs. I am dismayed. Praying God will bless me. God bless all in our forum.

UPDATE: MARCH 2021
When I was 10 years old, I tested positive for Non-TB, inactive. I was treated as well with my mom and brother. My last story here on this site was 10 years ago I was diagnosed with MAC. Treated for two years with the “Big 3” medications; very ill at Louisville Hospital in Ky. and at Mayo Clinic in Rochester Minn. I would be treated for pneumonia However, the MAC laid dormant until August of 2018, I was hospitalized in Evansville IN. for one month and felt I wouldn’t make it back home. I was 58 years young at the time and had Macrobacterium Gordonea, bronchiectasis and a lung abscess. I was being treated with two IV’s for a month every 6 hours. Then, when out of the hospital I was placed on oral medication for a period.
Last September, (2020) I obtained pneumonia and have since been treated 4 times with prednisone and antibiotics by my pulmonologist. As soon as the medicines were out of my system, I was sick again. I had a cough with green sputum, it was awful. My level of breathing was low. Exhausted. Then, in January 2021, two cultures were requested by my pulmonologist and a CT Scan. At this appointment he said my CT Scan looked good and the culture showed nothing. Even though I told him I felt terrible he said it is just your asthma acting up. So, then he listened to my chest. I was wheezing so much he put me back on prednisone and antibiotics and changed my Anora to Trelegy. Then, in a week his office called and said the Macrobacterium Gordonea was back and to take another culture. Then, another week passed and before I got the other culture to them, they called and said the second of the first set was now showing Macrobacterium Gordonea and I was referred back to my Infectious Disease doctor who yesterday told me that he was going to do nothing on treatment. However, in 6 months to go back to my pulmonologist for another CT Scan and to contact MAYO CLINIC, Dr. for a second opinion. I was so disappointed. I feel terrible when I wake in the morning it is hard to get myself going. Coffee with honey has stopped my cough almost completely and I would suggest it to anyone that has a terrible cough. My stomach is upset a little not bad. My energy is low with a mild headache. I can still work. Just get so tired. Really, I feel heavy in my chest and so very tired. I am contacting Dr. Aksamit at Mayo Clinic today. I have gained weight due to all the prednisone.
Thank you and May God Bless you all,
Donna L. in  Southern Indiana


DANA B:  BORN 1944; DIAGNOSED in 2014 AT AGE 70.

I was born in 1944 in Montana and diagnosed in 2014 with MAC at age 70. A year later with Bronchiectasis. Getting diagnosed was a shock to me because my entire life I had been very active, extremely healthy and on the go constantly.

I have a MFA in art and have been a practicing professional artist for all of my life and fortunate to be able to be successful in the process. I have lived in Chicago and New York and currently winter a bit in Mexico with my husband Stan, a designer. I began as a painter and then became extremely interested in Public Art.  It allowed me to work in a large format and place pieces throughout the US.  For those of you in the Northwest, I have work at Oregon State Health Science Building, Timberline Lodge, Mt. Hood, OR, The University of Idaho, Moscow, Big Bend College, WA, The Casey Foundation and Rainer Bank, Seattle, .,West One Bank, Boise ID., among others.

My diagnosis came when I went to my GP for a routine check.  While lying on my back, I coughed a few times.  He gratefully took that to mean I might have pneumonia and had me have an x-ray. I thought he was crazy since I felt fine,  but went along with it.  The x-ray came back showing what he thought was pneumonia and he put me on a Z-pac.  A few months later when the cough came back he had me do a CT and sent the results to the Pulmonologist who diagnosed MAC.

He sent me over to Infectious Disease where I was watched for almost a year since I felt good and had no symptoms.  In passing, the Dr. had observed a "bit of bronchiectsis" but said nothing to worry about!  He obviously knew nothing about lungs. He then said that maybe I should go on the Big Three before I showed any symptoms and with trepidation, agreed.  He gave me all three drugs at once and I got violently ill.  Throwing up or constantly nauseated, blurred vision and ringing in my ears.  After 2 weeks, he took me off and I said it was time to go a different route. Bye bye ID doc.

I made an appointment to see Dr. Daley at NJ after Marge's recommendation.  He is a very caring man and I am so glad he is my doc there!  I did the usual 10 day intake and discovered that, I did indeed have a good case of the bronchiectasis to go along with the MAC, and felt rather betrayed by the ID doc in not wanting to address this more rigorously. I also found out I had Gerd and aspirated. Who knew since they were silent?

Recommendations which I mostly follow:

Drink lots of water,
Nebulize with saline 2x day
Sleep at 35 degrees and only on back or left side
Wait 3 hours after eating and drinking to go to bed
Follow a no alcohol, no chocolate, no caffeine routine
Exercise aerobically
Practice swallowing and breathing exercises
Don't bend over after eating or drinking
Follow the Gerd diet ??

I have been following most of these things religiously but adhering to the Gerd diet is a bit shaky.  Since I have silent Gerd and aspiration, and love to cook and eat well, I digress. I never have any repercussions from any foods so its hard to believe that the Gerd exists! I also have added wearing a mask when showering or traveling on a plane.

We live in the country on a ranch so I had the water in our house tested.  It did not come back with MAC, but had several other strains of bacteria.  I am in the process of having our well water tested.  In the mean time, since the diagnosis, I have been boiling our home water, and only drinking Glacier bottled water when out in the world.  I never drink regular city water and never drink out of a water/ice machine. I may be too ‘over the top’ here!

I have been seeing a naturopath who had given me NAC, Similase and an expectorant tonic.  After using the herbal tonic for a few weeks, I noticed some slight blood in the sputum so have discontinued it for now. My GP also added 2 Mucinex tablets each day. (NOTE FROM CYNTHIA: I believe NTM docs recommend to NOT use Mucinex...will try to research)

Last January, 2016, I went back to NJ for a 6 month followup with Dr. Daley. I had a slight infection and was given Bactrim. The MAC seemed stable thankfully.  But I didn't see any improvement in the bronchiectasis. Because I was nebulizing saline 2 x day, I have brought up lots of mucus several times a day.  This means leaving the room to spit when in company.  I have tried to orchestrate it to be say, just in the morning, but no luck so far.

I read the book Beating Bronchiectasis by Daniel Pecaut ( we all should read), and have decided to incorporate  some of the steps.  For the last few weeks I have tried to eliminate wheat and dairy out of my diet. YIKES and NO fun, adding more fruit and vegetables instead.  So far nothing different has happened with the amount of mucus secreted or the viscosity of it.  I am just looking into this but will start some acupuncture and PT as well. I would appreciate any suggestions you all may have regarding other methods that work.  I'm guessing on these things. I feel that if Pecaut could find success, maybe we could perhaps get a bit better ourselves.  I do not want to believe that " this is what you've got so live with it".

I have given up on the Missoula ID guy and have waited 6 months to get into a new Pulmonologist in Missoula which will happen in August.  I feel a bit like I'm out in the dark and  I know many of you feel the same.  I will go back to NJ perhaps in the fall because I don't have anything here to substitute.

That is why all of you are so valuable and I thank you so much for your friendship.


CASEY J : BORN 06/19/1943,  DIAGNOSED in 2004 at age 61 with bronchiectasis.  Dx 4/2017 at age 74 with MAI. Unknown how long I’ve had infection.

In June 2017 I spent 2 weeks in the day unit at National Jewish Health in Denver under the care of the fabulous Dr. Daley. I started antibiotics in July 2017.  Since I don’t have a productive cough, I use a 10 minute nebulizing hypertonic saline solution in combination with pulsating vest therapy 30 minutes twice a day.  Most likely will have part of my right lung and part of my left lung removed in two surgeries. Although I am usually quite cautious about what I’m told when it comes to my health, I completely trust the advice given by Dr. Daley on my behalf.

I have great support both with family and friends.  We have 5 children, 10 grandchildren with a wide range of ages. None of our family lives within 300 miles but we love getting together just the same.  I belong to a women’s organization, Philanthropic Educational Organization (P.E.O.), which helps women with their educational goals and it’s a great support group, too. I am a retired dietitian, most of my career spent in ICU, then after moving, working for a consulting company which contracted with national restaurant chains doing food safely inspections.  Quite a change from ICU!  Now my husband and I are both fully and happily retired living in Central Oregon on 160 acres where I have horses and Don mends fence.  That’s a good deal! Except in really hot or snowy weather I trail ride almost every day.

JANET MacD : BORN 1942;  DIAGNOSED in 2017 AT AGE 75

Hello, greetings to all my new NTMnwest friends.  I'm Janet MacDonald, born 1942 and diagnosed at age 75.  I include my surname because ironically I learned I have been infected by MAC disease.

I'm originally from Washington DC area moving out here after 9-11.  During my working years I was employed as a librarian at the Library of Congress and also served as a reservist in the Air National Guard.  I've always been a keen international traveler and wonder if I could have compromised my health during sojourns in many third-world countries.  But then I also am afflicted with GERD, bronchiectasis, esophagitis (and old age).  Certain habits like hot-tubbing, swimming, gardening, taking showers, etc. may have also contributed.

I was given a chest X-ray during a visit to the Albany ER in December for extreme nausea and weakness.   Noting suspicious growths the radiologist recommended periodic images for the next 4-5 months so I consulted a Corvallis pulmonologist who rushed through my initial appointment.  He performed a pulmonoscopy confirming his suspicions and put me on the Big 3.  After 2 days of drugs I was admitted to hospital for observation after being stricken again by nausea, loss of appetite, wasting, etc.  The hospitalist removed me from all meds and contacted OHSU for a consult for me.  This past week I met with OHSU Dr. Luke Strnad who discussed the imaging with me and offered me three alternatives:  suspend all meds for the present since I'm asymptomatic and in very early stages of disease, try a leprosy drug in a blind experiment, or return for another try with Big 3.  Easy choice for me at this time though I realize at some point I might have to return to these drugs for another try.  So for the meantime I exercise by walking and doing weights and eat healthy which is easy here in Pacific NW. 

Marge G. was my first point of contact with the group and she's been an invaluable resource sharing vital information with me and just as important offering me a long-distance hug as I struggle to adjust psychologically to this horrible disease

At this time my biggest concerns are advisability of travel given these periodic bouts of nausea and finding another pulmonologist within easy commuting from my home in Albany.  I'd welcome hearing from anyone else who has eschewed the drugs.  Thanks for your support of this community.

March 2021 update:

Still struggling with such symptoms as loss of appetite and weight (15 lbs) and energy loss, also mental sluggishness. Last year developed itchiness allover but 3 dermatologists unable to help.  Now trying one more and course of accupuncture. 
Added naltrexone and gabapentin as recommended by another specialist. Which nauseated me.

MINIMAL sputum which I continue to nebulize.

Travel while you can and enjoy what is left.  Janet



JEAN S: BORN 11/7/1942;  DIAGNOSED W/ MAI and BRONCIECTASIS in 2005 AT AGE 63.

Pseudomonas was present in sputum samples in 2005/2006.  Although MAI was present it was dormant, no flare-ups. OHSU contacted me in 2006 and wanted me to join a study of people diagnosed with MAI as to why it was dormant in some people.  I was unable to join that study. After a decade of dormancy the MAI returned in October 2015 when I started taking the big 3 antibiotics and I'm still taking them (4 years). 

Had pneumonia in 2007, then a decade free of exacerbations. Pseudomonas returned March 2017 and have had 7 bouts since then. I take levofloxacin for the pseudomonas.  I have had inhalers throughout the years but they seem ineffective. I do not have shortness of breath.
Treated since 2005 by Dr. Gregory Flick at The Oregon Clinic.

I was born in Maury County  Tennessee and attended Middle Tenn. State University two years.  I left Tennessee in 1963 when I married and my husband and I have lived most of those years in Hillsboro, Oregon where we owned our real estate office and raised 3 children.  We celebrate 56 years of marriage in 2019.  Our sons live in Portland and our daughter lives in Virginia(D.C. area).
We are retired and spend 5 months of the year in Haines, Alaska, 2 months in Tucson, Arizona and the rest in Oregon.
I have a part-time fun hobby buying and sometimes selling antiques/ collectibles.

If all goes as planned I will start the new drug liposome arikayce late Nov 2019.

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#2 2016-06-28 12:50:41

Nancyr
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Registered: 2016-05-30
Posts: 37

Re: OUR STORIES

Anyone who wishes to furnish missing "Story" data or correct their story, just post a reply to me and I will edit.  Anyone who wishes to add a story, email me your individual story and I will post it.  Thanks!!   Nancy in Colfax  nrothwell12@gmail.com

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