Want better control of my infections...welcome any and all.
Posted , 7 users are following.
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
Ok
1 like, 46 replies
Bela1957 Russell27NOLA
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Russell27NOLA Bela1957
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Best to you and your family
Russ
steve62514 Russell27NOLA
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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
Russell27NOLA steve62514
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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
steve62514 Russell27NOLA
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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!
Russell27NOLA steve62514
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Best
Russ
terri24729 Russell27NOLA
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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.
Russell27NOLA terri24729
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Russ
charles97600 Russell27NOLA
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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
Russell27NOLA charles97600
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Russ
charles97600 Russell27NOLA
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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
Russell27NOLA charles97600
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Thanks
Russ
Russell27NOLA charles97600
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charles97600 Russell27NOLA
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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
Russell27NOLA charles97600
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All my best,
Russ
charles97600 Russell27NOLA
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I just looked up my VA medication and what was listed is called Immune Globulin IV ( GAMUNEX )10GM,hope that helps.
Regards,
Charlie
Russell27NOLA charles97600
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Best,
Russ
steve62514 charles97600
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*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.
Russell27NOLA steve62514
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Russ