Want better control of my infections...welcome any and all.

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Hi everyone, I'm writing to get feedback about how your BRX has progressed. For the first seven years I literaly had no problems except for occasional respariotory infections. About 18 months ago I began to have fatigue and it has moderated some since so that I am about back 75% normal. Less fatigue is a welcome guest.

In the last year I have begun to have exacerbation of the BRX with comes with gobbs of sputum priduction and not feeling well. My temperature in most of these cases has is low grade for me at 99.3. My recent event this past week had me feeling a bit more sick with my temp. at 100.6.

Usually, as I said, there is a round of antibiotics and steroids though I am trying to stay away from the two drugs so that I dont't develope all the consequences of overuse. The most recent event is being treated with Avelox.

Recntly I was diganosed with an ACHROMOBACTER lung infection and saw a great ID MD. He said that  trying to eradicate the infection would mean hospital stay and perhaps home IV antibiotics. He said that alot of us have infections like these and as long as they do not make us sick it is better to leave them alone. He said if I do get sick that he would admit me directly and begin treatment. For this most recent event he said if I didnt respond quickly to the Avelox that he would admit me. My fever was gone in12 hours.

After saying all of this (I hope at least one or two of you are still with me), I want to begin to pursue a more agressive line of attack that might end with Stem Cell inplant. I am willing to do what ever it takes.I think maybe a lot of you are dealing well enough with your BRX, so I would like to hear from you about how you managing: Diet, exercise, rest, sputum evacuation, medications, seeing your doctor on a regular basis, or what ever else that I might use to stop the large number of infections I am getting. I have had thirteen illness visits in the last year for antibiotics and or steroids.

Thanks for any and all of your thoughts and advise in advance.

Russ

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  • Posted

    I am new to this site, and I do not know so much of how i treat myself. I have flu and I think I have first infection. I am coughing and in addition I have so much pain in my chest. My cough is harsh and consist yellow to greenish mucus. I am very worry about my only child and my husband from getting sick too. It is awful feeling. My pulmonologist like to describe so many medications. He scare me whenever I visit him and I think he will kill me from medications' side effects instead. I think you have to keep yourself active and drink so much waters. My friend advice my to eat garlic every eight hours like four pieces a day to strong my immune system. Are taking systamic stroide or through MDI. I am so sorry to feel this way now and I hope you will feel good soon.
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    • Posted

      Bela, thanks for your responce, though now I am more concerned about you than myself. I will look into the garlic idea. I hope you can have the good luck to find a doctor that you trust, so that you won't be so fearfull of infecting your family and also so that you feel like you can get better. Is it possible for you to look for a doctor with whom you might feel more comfortable?

      Best to you and your family

      Russ

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  • Posted

    That's a lot of infections Russell. Hope it all turns around for you. Have you had your blood checked out to assess your immune system in the last year? I believe it is the CRP count or spomething similar that determines how well your immune system is functioning.

    I have an infection every 2 or 3 months (not bad and usually controlled very quickly with antibiotics) but the mere fact that an infection starts counts every bit as much as a bad one in my immunologist's mind. My pulmonologist had previously told me that my immune system was below par but the number of infections I have been getting coupled with a history of worsening CRP count has led my immunologist (referred from my pulmonologist a couple of months ago) to say that my immunodeficiency is close to some tipping point where I might have to have antibody replacement therapy. 

    I emphasise that its more than just the number of infections that signals this so don't panic (its not a death sentence anyway!). It's relatively rare I think even among bronchiex sufferers. She mentioned 1 in 25,000 

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    • Posted

      Steve thanks for your post so much. My immune system is an area that I didnt think of checking. Next stop immunology. Can you please tell me how active you are? I am having trouble with my normal activity levels. I can go for a few days and then Im wiped out and if not rested enough will get sick.

      Such a good lead. Charles mentioned the immune system  connection below. Will get back with you with any questions if your don't mind.

      Best

      Russ

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    • Posted

      To answer your question, I'm quite active Russell. I think I'm lucky despite the immune system problem. I have 4 or 5 infections a year but they are mostly shallow and are a minor inconvenience to my life rather than a major restriction. I'm on antibiotics (prophyactic or full dose) pretty much 80% of the time and that helps and luckily I don't seem to suffer side effects (yet!). I sometimes have a bad evening and then worry a little bit about upcoming commitments but 9 times out of 10 I feel fine within an hour of waking up after such a spike in my longer running low level infection episode. 

      I live in a warm country (very warm at times - Thailand) and have a pool, so daily swimming (about half a mile/750km or a one hour walk is on the agenda and complied with 3 days out of 5). I often do not bother if I am out in the garden tending the plants  or pool and therefore on my feet for several hours which I often do also. If I am that kind of active I find my sputum comes up naturally during the day and I don't bother with my lung clearance routine.

      I also organise a local group of social runners/joggers/walkers here in Thailand (called Hash House Harriers - we are 'drinkers with a running problem', though I drink much less beer than I did when younger, more a function of age than medical condition I think!). Organising the hash means I walk or jog 10km on at least one day a month - the bronchiex means I feel that a little more than before but it's still a capability and social event I cherish.

      I have a six year old daughter, my first child, despite my pensionable age* and a second adopted 18 year old, the cousin of my wife. She (my wife) is 25 years younger than me so there has to still be another form of exercise life left in the old dog yet. Extended families in Thailand are large and they take up a lot of energy - I'm living my life in reverse order and enjoying it immensley despite the lung issue.

      *Makes me sound older than I feel - I drew my first British pension last week so that makes me 65!

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    • Posted

      Steve, thanks for the letter. Interesting life you have there in Thailand. I'm tired and will get back with you tomorrow.

      Best

      Russ

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  • Posted

    Russell,

    Not sure where you live, but you may want to check out the Lung Insitute 

    My mother has Pulmonary Fibrosis and BRX ... she is waiting for approval from them to start her stem cell therapy... if you go to their website get set up to attend one of their webinars ... very informative. I sat through most of one last week.

     

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  • Posted

    Hiya,

    Steve has made a good point took them almost 2 years to find out that it was my Immune System was a big cause of my BX, was on treament once every month for 6 months for 3 hrs per session, so have that looked at it, worked good for me, then knowing that is it, work on anything to brings your Immune System back up I do alot of alternative stuff,as I say anything is worth try.

    Best Regards,

    Charlie

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    • Posted

      Charles thanks for your sharing about the treatment for your immune system. I am not familiar of the treatment you are refering to. Please give a little more info.

      Russ

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    • Posted

      Hiya Russ,

      Sorry to say I'm out of the states now,when I get back I will get the stuff they put in me,know my White blood cell counts where very low,but I;m sure once they see your numbers they will come up with the right formula.

      Best

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    • Posted

      Charlie, please let me know  what you treatment was and who provived it for you during those months. How did it affect your activity levels and your daily regeim of care. 

      Thanks

      Russ

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    • Posted

      Hiya Russ,

      The Immune Treatment was a big help from the first treatment I was not as tired,and then knowing that was part of my problem I worked on building my system back up naturally.

      My treatment was through the VA and as I said did it for 6 months,as the numbers came back up,

      I must say that reading about Azithromycin on this forum, talked to my Doctor to put me on it,that was 2 weeks ago and I must say I see a big change already,coughing a lot less and Mucus has gone down,and have more energy.

      Take it Mon./Wed/ Fri. 250 mg seems to be doing something hope it is a good choice we shall see.

      Regards,

      Charlie

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    • Posted

      Charlie, good to hear form you. I'm glad you are feeling better. I started on Azithromycin last week also,so giving it some time. Chalie, in your last post you mentioned a treatment that lasted for six months, three hours at a time. Can you tell me what that treatment was? I'm wondering if it was a Vitamin C treatment that Tabatha mentioned below. I have an appointment with a Naturopathic doctor next week.

      All my best,

      Russ

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    • Posted

      Hiya Russ,

      I just looked up my VA medication and what was listed is called Immune Globulin IV ( GAMUNEX )10GM,hope that helps.

      Regards,

      Charlie

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    • Posted

      Sounds like ART (autoimmune replacement therapy - it's broadly similar to what they give to HIV sufferers to stop them developing AIDS I think). Surprised if they stoptped giving it to you after 6 months though - my immunologist said that if I went on it I would probably be on it for life. It's also hugely expensive in the UK as mad cow disease means we import quality plasma* from safer places like the US (really?!). She said it costs about GBP 35k (US$ 50,000) pa if you can't get it on the state or on an insurance company. If it is a treatment that doesn't last a lifetime that may save me a lot of money - I don't want to repatriate to the UK and I don't think my insurer will stump up for the full whack either if I am living outside the UK either. Luckily life went well for me on the financial front with one of those stupidly overpaid City of London financial jobs for several decades and a savvy enough approach to personal investing and saving born from having thrifty Yorkshire parents. Always thought I was living a charmed life, so the bronchiex was the payback I had been expecting.  

      *As I understand it you get a concentrated blast of immune rich human blood cell plasma that has been carefully processed and tested once a month either at a clinic or self injected at home after a 4 to 6 week trial and training period. 

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