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being refered to an infectious disease doctor, scared

Posted , 6 users are following.

cuddles1
cuddles1

My doc just called and the culture from my broncoscopy grew two unusual bacteria, the pulmonoligist had never heard of them, so he is referring me to the ID doctor. I just finished a long course of antibiotics, and am feeling good right now, so maybe am clear. Anyway, it is scary, and another doctor to see! Has anyone been to one of these?

1 like, 8 replies

8 Replies

  • susan71068
    susan71068 cuddles1

    Posted

    Hi Karyn, do you know the name of the bacterias that were grown ? Pleased. To hear you feel well. Xxxxx
    • cuddles1
      cuddles1 susan71068

      Posted

      Hi susan, he told me the names of both, we were talking over the phone , they were very hard to pronounce , so I did not get a spelling, but will get it when I see the specialist, and I will let you know. My mucus has been white since the antibiotic, but yesterday I see it is getting yellowish again, so feel the same patern is happening again, and it is still in there.
    • susan71068
      susan71068 cuddles1

      Posted

      Ok Karen it's always good to get a name of any infection or bacteria so you can make sure you are getting the right antibiotic/treatment. Good luck xxxx
  • Stixlabushka
    Stixlabushka cuddles1

    Posted

    I always ask to get them spelled out andwritethem down. I've seeeverdoc known to man for my lungs, they'll refer you if they can't deal with it. Not a bad thing. We grow bugs because our lungs can't clear the sputum properly, so they fester and cause infection. Everyone has these bugs, buthealthy peoples lungscan clear the phlegm out with ease. 

    Airway clearance, lots of water, healthy diet and excercise, you'll be fine. A good reference is your lung function test both FVC AND FEV1. 

    Goodluck

    message me if you need to chat

  • steve62514
    steve62514 cuddles1

    Posted

    As others said, good to be on the road to identifying your specific bug. i spent 15 days in my consultant's renowned lung defence unit at Papworth Hospital while they ran sputum samples, blood tests and gave me a couple of less common broad-based antibiotics. At the end of it they were still unable to identify the specific bacteria causing my infections and i had minor episodes that suggested the antibiotics they were trying out had not hit the mark. Lucky you, I say!

    I have been into hospital under the care of an infectious diseases specialist consultant in relation to an infection that was causing me fevers 5 years ago - nothing to do with bronchiectasis - mine proved to be a South-East Asian parasite, but the principles are the same. These specialists will simply run a lot more tests and interview you in detail about your travel, contacts condition and and then start running results against a much broader (potentially worldwide) database of info about bacteria/infections than the average anlaytical lab at a hospital will have. I was at a very large Regional hospital St James in Leeds but it stumped then and only when the samples were sent to the Lodon Hospital of Tropical diseases was the parasite identified. The treatment drug had to be imported from Switzerland so rare was the incidence in the UK. The drug cured me completely in about 3 days flat!!

    Just cos it's not normal does not mean it's dangerou or untreatable.

    Best wishes ..

    • cuddles1
      cuddles1 steve62514

      Posted

      Wow steve, that is amazing, that they finally figured it out and you got rid of it! My infectious dictor now has me on a sulfer drug for those germs I have. If it causes me to get migraines, then I will be doing antibiotics by iv. Can anyone tell me if they have had any side effects from this method?
    • steve62514
      steve62514 cuddles1

      Posted

      I was on 15 days of a couple of different antibis in Papworth Hospital Cambridge in June. IV 3 times a day. They monitored carefully and warned I might have digestion/bowel discomfort with indigestion/acid reflux the most likely. In the event of such they would try to control with Opramazole (bog-standard anti-acid reflux stuff) and if that didn't work then try different antibis. In the end it was not needed - I had no side effects to speak of (though I have always handles antibis well).

      I don't think IV antibis are any worse than tablet antibis for side effects - must have read the intruction leaflet of 5+ different antibis in recent years as my lungs have been getting sorted out. The leaflets often cover the IV version as well as tablets and I don't recall there being any reaction differential between soluble injectable and tablet form.

      Interestingly Papworth nurses did not specifically time the 3 doses to meet meal times, which many leaflets recommend for tablet antibis (to minimise digestive disruption. Doses were 7am/around 2pm and 10pm. +/- one hour. That may have been specific to the two antibis they gave me though - Tazocine + one I am waiting to recall the name of (consultant's release memo chased).

      Re detecting my infectious disease. I mostly ive in rural Thailand. My local Thai GP commented afterwards that the parasite causing the infections is so endemic here that any decent GP would nail the symptoms and order relevant stool tests. As it was it had not been seen in Yorkshire before! While I was in hospital, coincidentally a one hour documentary on the London Hospital for Tropical Diseases ran on TV and the next day I commented to my Leeds consultant (real nice Irish guy) that the boss there seemed to be a very committed clinician. "Yes he's world class - it was him who told the staff to analyse for opisthocarsis when he spotted where you lived."

    • cuddles1
      cuddles1 steve62514

      Posted

      Thank you for the information, it was very helpful. I am glad you are doing so well.
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