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Newly Diagnosed (Lengthy Intro) & Questions

Home Forums NTM Support Forum Newly Diagnosed (Lengthy Intro) & Questions

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  • #34499
    John DoughJohn Dough
    Participant

    Hey all… this seems to be the most active forum online for discussions related to NTM. This past week I was diagnosed with “nontuberculosis mycobacterium” localized in the lungs.

    About me:
    -29 y/o, Male
    -Healthy, nonsmoker (never smoked)/non-drinker, normal weight (and BMI), no family history of infections
    -HIV-negative
    -History of stress/anxiety
    -Zero cough, zero history of breathing issues
    -Recent lung function (spirometry) results revealed normal, healthy lung function
    -Worked a part time job for a few years that involved dust exposure
    -Bilateral peripheral neuropathy onset in both hands (~Jan 2017) – confirmed by 3 EMG/Nerve conduction studies (neurologist suspects idiopathic neuropathy or tendonitis, PCP thought tenosynovitis, orthopedic hand surgeon suspected myofascial pain syndrome, rheumatologist thinks not arthritis and not tendonitis/tenosynovitis, different PCP said could be early signs of an autoimmune condition like sarcoidosis)
    -Experienced a few intermittent bouts of nausea in the evening this past summer (very brief – didn’t usually affect eating)…
    -No history of unintentional weight loss
    -Conjunctivitis (eyes noticed in 2017 by PCP) – ophthalmologist said could be inflammatory but eye function is fine
    -History of urethritis (which I suspected to be mycobacterium – but urologist couldn’t find it) – still have urethritis
    -One bout of extreme coughing in ~2014 (this lasted weeks – but may be unrelated)
    -2 bouts of difficulty breathing at night in 2016 (woke up gasping for air)… never occurred since.
    -Intermittent exposure to second hand smoke (nothing where I live though)

    Summer 2018 (Stress, poor sleep, fatigue): This past summer I began experiencing lower energy than usual and was highly stressed. I didn’t sleep well at night because the people I’m living with like it warm at night… I couldn’t get comfortable with the temperature ~74-76… so was having “night sweats” (although I’m thinking they were temperature-induced)… have always had issues sleeping when it’s hot in the summer. During this time I noticed impaired cognition, poorer productivity at work, and had low energy/fatigue.

    To compensate, I drank extra green tea. When the green tea didn’t work I began buying energy drinks. The temperature finally cooled down where I live as did the home temperature… this enabled me to sleep peacefully with zero “night sweats.” That said, I’d get 7 to 9 hours of sleep and continue waking up exhausted. I told others that I felt “fatigued”… but figured it may have been a protracted response to the stress/poor sleep that I experienced throughout summer.

    Fatigue: I also pushed myself to exercise after work (even if tired). I would go on 3 to 5 mile runs – usually 2 to 3 times per week. I’d always feel more exhausted after these runs and felt as though it would take days to fully recoup my energy. I also thought that maybe certain foods were draining my energy so began “fasting” for most of the day instead of eating… this sometimes helped with energy.

    Arm pain: One night in September, I decided to also lift weights (including a “chest” workout). Approx. 1-2 hours after the weight lifting session (involving bench press), I experienced a sharp pain down my right arm. The arm pain went away in ~2 days but a sharp yet low-grade (3 out of 10) pain localized in my lower right chest remained after the arm pain cleared up.

    Chest pain: Initially I thought the pain was gastrointestinal, but then I fasted the next day, had a bowel movement, and the pain remained. Despite this pain, I went for a ~5 mile jog – at a relatively slow pace because of my fatigue. Had no problems with the pain during the jog, but when I got home and ate, I noticed the same localized chest pain while laughing at a joke on TV. I also took a couple deep breaths and realized that it was painful to breathe deeply… further laughter also was painful.

    When it came time to get some sleep at night, I couldn’t get comfortable because of this localized pain (tried lying on back, each side, stomach, etc. – no position was comfortable – all were somewhat painful). The pain woke me up during the night after ~2.5 hours of sleep… with some effort, I was able to fall back asleep for ~3 hours – only to be woken by the pain (again).

    Fainting episode: This time I checked my phone, sat on the floor, then had a fainting episode (i.e. syncope). Feeling miserable from the syncope, I went to the doctor – who immediately referred me to the ER. In the ER nothing was found initially but the ER doc wouldn’t allow me to leave. Ultrasound of heart showed normal heart function – as reported by the cardiologist.

    CT Scan & Bloodwork: Blood cultures showed mixed bacteria – so was put on Vancomycin IV followed by Levaquin IV. Further samples were unable to replicate earlier cultures – so was taken off of Vanco/Levaquin. CT Scan showed a cavitary lesion (~2 cm) in upper right lung and 2 nodules (I think).

    Bronchoscopy: Couldn’t produce sputum (tried time after time)… so had to undergo a bronchoscopy. At the time of the bronchoscopy, the staff wasn’t well-prepared. The staff also dropped the bronchoscope on the floor without replacing it before the procedure. I didn’t know what was going on because I’m not familiar with this procedure – after the process I looked up what the bronchoscope was and realized it was what had been dropped. Nonetheless, I underwent this procedure and now feel as though this dropping of the bronchoscope or pre-contamination may have affected the outcome or introduced pathogens into my lungs (hopefully not). Post-bronchoscopy I had a fever, chills, etc. – but this remitted within 24 hours.

    Differentials: Pulmonologist strongly suspected either blastomycosis or histoplasmosis was the underlying cause of my “lesion” and “nodules” based on where I go jogging. A few of the additional differentials included: cancer, tuberculosis, aspergillus (mold)… The “tuberculosis” test eventually came back negative – as did the cancer test. (Still not sure about the other tests)…

    Released from the hospital: Upon my release from the hospital I was informed that I likely experienced “syncope” in response to the chest pain. I was told that although the chest pain was on the same “side” as the cavitary lesion – it was not near the actual lesion (my lesion is up high – and the pain was in the lower part of the upper chest). Pulmonologist and hospitalist agreed that my “run” that night could’ve also affected my electrolytes and increased likelihood of a syncope in response to the chest pain. I asked what caused the “cavitary lesions” and “nodules” and was told that many people have both as a result of past infection.

    Phone call (Test results): About 6 weeks after I was released from the hospital I was called in for a pulmonary function test, and thereafter, an appointment with a physician’s assistant specializing in pulmonology (because the pulmonologist was on vacation). They would not inform me of the rest results over the phone.

    Diagnosis: Pulmonary function test showed excellent lung function. However, the pulmonary PA informed me that the “test results” suggested that I had “nontuberculosis mycobacterium.” (Blood work was negative for this infection). I was prescribed Azithromycin (250 mg/d), Ethambutol (600 mg/d), and Rifampin and am absolutely petrified to take this combination of medications… I knew nothing about this condition but immediately asked questions about ototoxicity of medications (this is something I’m deathly afraid of). Now I’ve read that Ethambutol can damage optic nerves and cause blind spots, color blindness, and blindness…. and long-term Azithromycin can cause hearing loss. Furthermore, if Amikacin is used (which might be necessary), hearing loss is pretty much a guarantee.

    Emotional rollercoaster: Initially I didn’t even have the courage to post here on this forum. I still feel extremely depressed. The first night after my diagnosis I couldn’t sleep – got 1 hour. Second night got a few hours. Third night I forced myself to take pills to sleep (not something I’ve ever done) because I’m so distressed… I’m distressed about the diagnosis, whether it’s accurate, the duration of treatment, and medication side effects (especially hearing/vision-related).

    Bronchoscopy (Questions)
    1. Can I really trust the results of the bronchoscopy?
    2. Could I have been infected during the bronchoscopy with NTM?
    3. How do I know the sample wasn’t contaminated in the lab with NTM? (Seems as though this happened with my bloodwork… and I’ve read that MAC/NTM are ubiquitous in the environment).
    4. How do I know the bronchoscope didn’t contaminate the collected sample?
    5. I’ve read that MAC/NTM is a normal bacteria to have in the lungs (even for healthy persons)… wouldn’t many people without lung disease have this in their lungs?
    6. Assuming I undergo treatment for 18-24 months and test negative for a year – what if the bronchoscopy still shows the bacteria? (Isn’t there a high risk of a false positive here – such that some people who are actually negative will test positive?) What if the bronchoscope reinfects the person who was negative (or is this unlikely considering the fact that they’re on antibiotics)?
    7. Spirometry: Has anyone evaluated contamination via spirometry? Such as inhaling mycobacteria from spirometry testing? After all, these MACs are apparently hard to clear… and most patients getting tested with spirometry already have lung issues/infection – increasing risk that the subsequent spirometry users will experience contamination.

    Nontuberculosis Mycobacterium Treatment (Questions)

    1. If I have an adverse reaction (e.g. hearing/vision issues) and need to discontinue treatment, won’t this simply create bacterial resistance (ultimately leading me to choose my lungs vs. my senses)?
    2. Should I be informed of the specific bacteria and the sensitivity analysis (to antibiotics) before starting treatment?
    3. Has anyone here with immunocompetence experienced antibiotic resistance? (Such that no antibiotics ever cleared the infection)?
    4. What are the actual cure rates? What are cure rates on this forum? From what I’ve read – over 80% of people who are treated properly are cured… however, what isn’t reported is the fact that many who are reportedly “cured” end up with NTM again! (I’ve read that some people test negative for the ~1 year yet still have the bacteria… so it proliferates to a stronger stronger degree the next time…)
    5. Won’t I simply get re-exposed to the bacteria after treatment? I feel like treatment is futile if I’m simply going to get re-exposed in the future and/or end up with treatment-resistant bacteria.
    6. Should I go to National Jewish Health or Tyler TX for a second opinion before starting treatment?
    7. Can NTM/MAC go “latent” such that the infection won’t progress/propagate?
    8. Which format of Amikacin is least likely to induce permanent hearing damage? (Or are they all relatively risky?)
    9. Has anyone here cured their NTM without Amikacin?

    General questions:

    1. Has anyone here chose not to treat their condition? (If so, why? And what happened?)
    2. How many immunocompetent forum members have treated their condition successfully without relapse?
    3. Has anyone here tested their immune function/biomarkers to determine whether they may have lower immune function due to biomarkers being out of range?
    4. Has anyone used hydrogen peroxide via inhaler to help treat this condition (as an adjunct)?
    5. Would it be feasible to somehow target this condition with vinegar? (I’ve read that vinegar can eradicate this infection on lab equipment)
    6. Are there any new developments in treating this bacteria such as with gene editing (CRISPR, phage therapy, light/laser therapy,
    7. Has anyone tried adjunct Thiolanox or a similar nitric oxide therapy for this condition? (If so, what were the results)
    8. Has anyone here undergone surgery for this infection? (If so, what was the outcome?)
    9. Has anyone got the TB vaccine after this infection? (I read that it might help…)

    Closing…

    I realize that this is a long post and probably won’t get many (if any) replies… No need to respond to the entire thing if you don’t have the time/energy. I plan on scheduling a follow-up appointment with a doctor to discuss these questions that I have. (At the time of diagnosis, I had no clue about this condition or treatment modalities – so didn’t really know what questions to ask).

    Thanks for letting me vent.

    #34504
    Barbie Dsummergirl8822
    Participant

    Hello John, are you seeing a NTM specialist? National Jewish Hospital and UT Tyler, Tx have specialists that get into the specifics of your exact strain and determine proper treatment. They also test to see if you are Macrolide resistant (resistant to the antibiotic Azithromycin or Clarithromycin).

    If you are not seeing a specialist in NTM or infectious lung disease, I would call to see if either are in network for your insurance and get a consultation with them. Take this information and questions and get your answers! You can also find out more information on UTube that NJH had posted about when to treat and about the medications. (Very helpful).

    That is what I did after discovering my Pulmonary wasn’t as knowledgeable in the specifics of MAC disease.

    I was diagnosed in July and started the big 3 immediately and researched as much as I could to find the right resources.

    Good Luck

    #34512
    Amn BAmn
    Participant

    @John dough Hey! Im a male too.in my 30s. I was diagnosed 2 years ago and still on antibiotics. Where do you live? I’m in Canada so the system is different here but if you can go to NJH sooner. There are very few doctors who actually really specialize in this disease and can fix it. I wasted 2 years and now I am worse than when I started because my doctors were idiots and just like you I never had major health problem and didn’t know much about this illness. But basically do what you can sooner the better. Sounds like you already did your research and are very knowledgeable which is great. Also check out Mayo clinic connect forum and group support. I like it better than here. Its way more active and patients engage in your subject. The group is called Mac & Bronchiectasis.
    In regards to Amikacin the IV is more toxic thats why you have to do regular hearing check but the inhaler is more tolerable. Ive done both.
    About surgery I don’t think everyone qualifies. Thoracic surgeons have to decide. Your cavity is small so prob wouldn’t need it.

    overall general hospitals most likely don’t get down to the bottom and won’t do all the detailed testings needed in regards to drug sensitivity, immune function, etc. Your best is to go National Jewish Health and let the experts handle it and answer your questions.

    Happy to answer more questions. All the best….

    #34811
    Roxanne WiseRoxanne Wise
    Participant

    John:

    I was diagnosed in early 2012 and treated with the exact same “big three”. 55 year young healthy, white female with no history of major illness in my life. I spent 2 years on those drugs and then my pulmonologist declared me cured and promptly retired. All the other good docs in town weren’t taking new patients. I’m thinking that might have been a good thing because in my proactive research to make sure this stuff doesn’t come back, I’ve learned a lot. I do believe I had a fairly advanced case of this stuff because I know I was misdiagnosed for two years. Got a sniffle? Got a cough? Here … take this z-pack and go home. I wish I knew then what I know now.

    During your bronchoscopy from hell, I’m wondering, did they do a biopsy on those nodules? Plantonic bacteria are very different (and much easier to identify and treat) than bacteria that has formed a protective biofilm barrier. This is what makes MAC infections so darn hard to treat. I am actually shocked that some pharma company hasn’t come up with a great biofilm disruptor but I guess making sick people well again doesn’t do much for the bottom line. There is no way I would take those drugs if I wasn’t convinced I had an active MAC infection.

    At any rate, as part of my Stay Well protocol I take a daily NAC (N-acetylcysteine) dose of 600 mg divided, 12 mg of astaxanthin, oil of oregano caps (two weeks on/two weeks off) and chlorella. If I were actively being treated for a MAC infection today, I would take all of the above with the exception of the oil of oregano and add a good spore recover and probiotic regime to it all.

    I hope your journey to wellness is Working.

    Roxanne

    #34841
    Katherine HGKatherine
    Participant

    I am a 63 year old otherwise healthy woman who was diagnosed with NTM (also called MAC?). I am also in Canada. I was diagnosed after being sick for about 10 months, starting with pneumonia in April 2018 that was antibiotic resistance and finally cleared up in June. I was diagnosed and I am being treated by a respirologist, after 2 CTs, a sputum test and a bronchoscopy.
    I have had a chronic cough since last spring (comes and goes) but the most debilitating symptoms are nausea and fatigue. It’s not a flu type of nausea (eg with vomiting or diarrhea) but one that I can only describe as making me feel sick through my whole body.
    After 4 weeks on the treatment of 3 different pills (Monday, Wednesday and Friday), I feel no better and I am hoping that I will start feeling better soon. I can relate to posts by people who say that they feel isolated and can easily get depressed.
    Questions –
    Has anyone experienced this kind of debilitating nausea?
    I’m guessing the fatigue is pretty common?
    Does anyone have any experience with how long it takes to start feeling better?

    Thanks!

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