Anyone have experience with bronchiectasis and Haemophilus influenzae?
I was diagnosed with bronchiectasis in 2016. My cough had gotten a lot worse over the last couple years, I was fatigued and what sputum I could catch was green. Also had a low grade fever, below 100. Bronchoscopy was done, H-influenza found and treated with Doxycyline in November. Fatigue is gone, cough improved, and sputum is clear. But at the 8 week point MAC culture came back positive. Pulmonologist wants me to start the big 3, in spite of the fact that my symptoms are better and my CT scan shows "no significant change" since last one in 2017. After watching videos (including one with Dr. Kevin Winthrop who my doc said he'd send me to if the big 3 doesn't work) I am declining. Doc is not happy about my choice, but will see me every 3 months. I am focusing on airway clearance and exercise, getting so much information about that here since he did not really discuss that with me. I am starting to cough a bit more and just read that H-influenza can also remain in the lungs. I am wondering if it is likely to flare up again. Thanks.
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Sputum showed Entercocus. Doctor just prescribed Cefdinir. Has anyone tried this antibiotic? I'm just nervous to take new antibiotic after having bad experiences with Bactrim.
My understanding is that in regards to AFB (acid fast bacteria) such as MAC a colony of bacteria on a culture plate can arise from a single bacteria or maybe just a very few. Most labs will just give you a positive or negative on the AFB test (the test that takes 4-8 weeks to complete). I know that NJH (National Jewish Health) and Mayo does do it, but at Mayo I would always have to request the count. I have had 2 positives of Mycobacterium abscessus over the last 3 years, one of them was only 1 colony and the other 2. The pulmonologist in each case was not concerned and suggested it was only "colonizing" not "infecting" my lungs. Hope this helps. Bill
Sue, my mucus is still so thick that it still take me hours to clear enough to go to bed for the night.
I was taking guafenesin 1200 mg bid but now i am taking 600 mg bid. I can' tell any difference in the 1200 and the 600 as far as thining.
I am neb 7% saline followed by Levalbuterol, followed by percussion vest and areobika with another vial of 7% saline attached.
In between all of it, I am up and down to the bathroom to gargle, cough and spit and drain mucus.
I drink hot tea. (Breath Easy) tea during the day. Any other suggestions for thinning agents?
I remember reading something about a herb or supplement made by NOW and at the time I could not find it on line. NOW I have lost the name of it. Something that had an N_
Would like that and any other suggestions for thinning. I am scheduled for Cataract surgery, but called yesterday and cancelled my appointments because of bending over the bathroom sink and the heavy coughing. All suggestions will be appreciated.
I do have a couple of suggestions. First, the respiratory therapist told me levalbuterol first, to open the airways. Wait 10 minutes, exercising lightly. Then neb with saline, coughing as possible. No matter how congested I am, I never do airway clearance for more than 30 minutes at a time – Again per RT.
Two other thinning agents are montelukast (Singulair 10 mg at bedtime) and NAC (N-acetyl-cysteine) 600 mg by NOW or Jarrow.
I will offer my layperson opinion that you may well be trying TOO hard, irritating your lungs and making coughing worse. I find less neb, and more water, and exercise brings up more mucus.
Can you get an appointment with a respiratory therapist to go through your routine with you and evaluate each step?
I had wondering if I was irritating lungs. I will order the N …. and try your routine .
I have not been waiting 10 min sor exercising in between the Levalalbutral.
I have been doing 1 saline 1st to get some of the mucus out of the upper airway so as to her the Lev in
I have monyalucast I'm had and had stopped taking it a few months ago because otbobg seemed to be helping
Yes I can see a respiratory therapist but since your routine is working , I am going to try that first thank you
Thanks for yet another tip, Sue. I start my day with a bit of movement and stretching, then Albuterol and nebulizing with 7% saline, Aerobika during or after. I'll be reversing the albuterol and movement! Good to know that 30 minute max, too. I'm also finding that after my walk later in the morning, some mucous starts to move, and a few minutes with the Autogenic Drainage app is helpful to encourage a bit more clearing.
This is an update. I said my first sputum sample at NJH was positive for H-Influenzae and I was given a 15 course of Bactrim. I recently sent in another sputum a week ago and so far it shows H-Influenzae again. I don’t know if that means I never cleared it the first time or I’ve been reinfected.
Is the H-influenzae causing symptoms for you? I do hope you get it resolved soon. It's now three months since I took the doxycycline and I continue to feel so much better—no more violent coughing spells and so much more energy. I've been nebulizing with 7% saline and the Aerobika twice a day, and walking 5 or 6 days a week. I take NAC as recommended by my pulmonologist and have no problem bringing up sputum at this point. I see him in a month and am curious as to how he will respond when I share how much I've learned from this group and how much it has helped.
Thanks. I’m not noticing any additional symptoms -worse or more frequent coughing etc. I will contact my doctor at NJH and I have an appointment with my local pulmonologist in a couple weeks.
Hi, it's JJ or Jane. I have had mac for over a year and on the 3 big ones. I was wondering if anyone has had terrible itching, not a rash, just itching on different parts of the body. First started on hands then feet and legs, now on back and arms. What makes it worse is I am on blood thinner plavics for tia and leaves blood blisters when I scratch. Use cerave itch cream but often.