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Medical Forum / Diseases and Disorders / Asthma / December 2004

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For those that did antibiotic therapy...

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Lissa - 03 Dec 2004 21:52 GMT
I have been off of mine for about a month now. I was doing
wonderfully. 100% better and tapering off of steriod inhaler.  The
last day or so I have felt short of breath again.  I took my rescue
inhaler and it doesn't help much, but it never did.  Does this mean
that it isn't going to work?  Or did I not take the antibiotics long
enough? I took them for 14 weeks.  I guess I was just feel so great
and hopeful. I am not horrible, but do feel a bit of tightness.  Has
anyone finished the antibiotics and felt a bit worse afterwards, yet
still recovered? I know there are only a few of you here. Just not
sure where to post questions anymore. TIA!!

Lisa C.
NorthShoreCEO - 03 Dec 2004 22:11 GMT
Lisa, you can post questions here or you can always email me if you prefer.  

Don't let yesterday's episode bother you.  Jim Quinlan cautioned me that it took him a year before he really felt like he was 100% better, and that he had good days and bad days along the way.  I found I had good days and great days.  Once, I felt short of breath and used albuterol which didn't seem to do anything for me, and later I wondered why I had a little panic thing about it.  The state of mind following this treatment is a bit of a roller coaster ride.  You're so grateful that you feel better, yet you're also afraid it can't be real and you're going to have a relapse at any time.  Wait until you're out in public and someone near you begins coughing.  You won't be able to get away fast enough, and then you'll feel stupid for being paranoid.  I still do that.  Anyway, there were other days I was slightly short of breath, but I just figured it was pollution or allergies and didn't spend much time thinking about it, in an effort to remain positive.  

Fourteen weeks is enough time to either eradicate it or improve your asthma if it was brought on by mycoplasma or c. pneumoniae, and IF you were taking Azithromycin.  I'm sorry, Lisa, I'm older than dirt and can't remember what you were taking.  If you were on Clarithromycin (Biaxin), then no, fourteen weeks wouldn't be adequate.  
Just take it one day at a time and know that your lungs need to do some healing now after being infected for a while.  Give it some time and don't worry or you may feel that tightness in the chest (stress) and think it's something else.  

 I have been off of mine for about a month now. I was doing
 wonderfully. 100% better and tapering off of steriod inhaler.  The
 last day or so I have felt short of breath again.  I took my rescue
 inhaler and it doesn't help much, but it never did.  Does this mean
 that it isn't going to work?  Or did I not take the antibiotics long
 enough? I took them for 14 weeks.  I guess I was just feel so great
 and hopeful. I am not horrible, but do feel a bit of tightness.  Has
 anyone finished the antibiotics and felt a bit worse afterwards, yet
 still recovered? I know there are only a few of you here. Just not
 sure where to post questions anymore. TIA!!

 Lisa C
Lissa - 04 Dec 2004 15:51 GMT
Thank you for the replies! It did make me feel better. Some more
information. I did take Zythromax, 1000 mg once a week for 14 weeks.
I guess the thing that is bothering me is I seem to be getting a cold
and am experiencing a bit of shortness of breath.  So I wonder if that
is the bacteria still hanging around.  It sounds like I should not
need any more antibiotics than I took though, correct?  And maybe it
just will take a bit more time. I will let this go a few days and see
how I feel. I guess I am not sure if I should call my doctor and try
for another 6 weeks or something?  Anyway, again, thank you for the
replies. I will hang in there and try to be positive. Maureen, you are
so right. I am scared to death having a toddler with the flu season
coming up. Though I did get the flu shot.  :)

Lisa
NorthShoreCEO - 04 Dec 2004 16:13 GMT
Lisa, you're suffering the first cold syndrome.  Poor Jack went through the same thing not long ago.  And speaking of Jack - how about an update???

A cold is viral and an antibiotic won't help it, but those of us who suffered with this know that a cold always ends up with secondary bacterial infections.  I guess the virus causes everything to flare up.  My first cold (and only illness in the past 18 months !!!!!!!!!!) was completely uneventful, despite my fear that it was going to end up in my chest.  It was the most pleasant illness I've ever had, and I couldn't understand what healthy folks whine about.  Then again, they're healthy and have nothing to compare it to, so if that's the worse thing they face, I guess I can understand their intollerance.  But sheesh!  

You can either call your doctor and see what he/she thinks you should do.  Or you can wait it out and see how your body handles this cold, and call him/her if and when you feel it's moving into the lungs.  You may decide you need to use your rescue inhaler for a few days, and if you need it - use it.  

The 1000 mg of Zithromax is a little higher than Dr. Hahn is using now, but based on emails he's sent to someone else whose doctor prescribed that dose, he feels it's not going to increase any risk and is fine.  

Remember - your lungs take a while to heal.  Dr. Hahn says people have told him they didn't feel really great for several months - and as long as up to a year.   You're going to have good and bad days - and even people without any health issues are short of breath when they have a cold, so don't panic and think the antibiotics didn't do anything!!!

 Thank you for the replies! It did make me feel better. Some more
 information. I did take Zythromax, 1000 mg once a week for 14 weeks.
 I guess the thing that is bothering me is I seem to be getting a cold
 and am experiencing a bit of shortness of breath.  So I wonder if that
 is the bacteria still hanging around.  It sounds like I should not
 need any more antibiotics than I took though, correct?  And maybe it
 just will take a bit more time. I will let this go a few days and see
 how I feel. I guess I am not sure if I should call my doctor and try
 for another 6 weeks or something?  Anyway, again, thank you for the
 replies. I will hang in there and try to be positive. Maureen, you are
 so right. I am scared to death having a toddler with the flu season
 coming up. Though I did get the flu shot.  :)

 Lisa
jackmallory@webtv.net - 04 Dec 2004 22:59 GMT
Jack here and feeling quite good.  Traveled with the help of my son and
got to see my grandchildren over the holiday.

Still tend to be coughing up real baddies the day after I take my weekly
750mgs of Zithromax.  So there's still an infection.

Went to therapy Tuesday after a two week absence due to the cold and the
subsequent visit out of town.  Had a pretty good workout with lighter
weights of course.

I  do have my flushot.   Facing winter with cheer.  Thanks for asking,
Maureen.
jackmallory@webtv.net - 04 Dec 2004 23:04 GMT
I  d o  try to write clearly.  My last post should have concluded

"Thanks for asking, Maureen---Jack-"
NorthShoreCEO - 05 Dec 2004 12:31 GMT
Jack, this is great news.  Your life has really changed quite a bit already, it seems.  You must have had it bad, to still be coughing junk up.  Will your doctor allow you to take it for a little longer than the twelve weeks if there are still signs of an infection at that point?  I had one woman write to me who had emphysema, and she was going through the same thing, convinced her doctor to let her extend the treatment and it cleared up the whole mess for her.  If I recall correctly, she needed another two months before the coughing up stopped.

Playing devils advocate here, but having read your other post about Spiriva, how do you know it isn't the new drug that's having you feel so much better?  (or could be both the Spiriva and clearing up the infection)  What was the timeframe for starting both?

 Jack here and feeling quite good.  Traveled with the help of my son and
 got to see my grandchildren over the holiday.

 Still tend to be coughing up real baddies the day after I take my weekly
 750mgs of Zithromax.  So there's still an infection.

 Went to therapy Tuesday after a two week absence due to the cold and the
 subsequent visit out of town.  Had a pretty good workout with lighter
 weights of course.

 I  do have my flushot.   Facing winter with cheer.  Thanks for asking,
 Maureen.
00doc - 05 Dec 2004 00:00 GMT
> The 1000 mg of Zithromax is a little higher than Dr. Hahn
> is using
[quoted text clipped - 3 lines]
> any risk
> and is fine.   \

FYI - HIV pts with microsporidia/isospora infections (a form
of chronic bacterial diarrhea) are given 1250mg weekly
indefinately without apparent harm. I don't think there has
been much dose ranging work done on this. It may be that
higher doses will work better (or not) but there is reason
to think we can go higher than Hahn does safely.

> Remember - your lungs take a while to heal.  Dr. Hahn says
> people
> have told him they didn't feel really great for several
> months - and
> as long as up to a year.

Yep - Even with conventional pneumionias it is sometimes
hard to distinguish what is from the actual infection (and
so should be rapidly clearing with antibiotics) and what is
from damage to the lungs (which may take a while to heal).

Signature

00doc

NorthShoreCEO - 05 Dec 2004 12:17 GMT
 NorthShoreCEO wrote:
 >

 FYI - HIV pts with microsporidia/isospora infections (a form
 of chronic bacterial diarrhea) are given 1250mg weekly
 indefinately without apparent harm. I don't think there has
 been much dose ranging work done on this. It may be that
 higher doses will work better (or not) but there is reason
 to think we can go higher than Hahn does safely.

 Right, and that was one of my arguments here when people were screaming about how unsafe it was to be put on weekly doses for twelve weeks.  It was actually tested for twelve weeks when initial testing was done.  Dr. Hahn, at this point anyway, doesn't seem to think that a higher dose is necessary - but he's tweaked the dosage over the years, so who knows how this will evolve.  

 Yep - Even with conventional pneumionias it is sometimes
 hard to distinguish what is from the actual infection (and
 so should be rapidly clearing with antibiotics) and what is
 from damage to the lungs (which may take a while to heal).

 In my case, I do (or did in March of 2003) have damage to the small airways, and I assumed it was probably a result of having pneumonia five times.  Does THAT kind of damage heal in time?  I actually feel that my lungs improved beyond the one year mark, but then, having had asthma longer than most who have been treated with antibiotics, I guess that shouldn't surprise me.  I'm still in shock at the result (for me), even eighteen months later.  
Joy - 04 Dec 2004 00:16 GMT
Lisa,

It isn't clear to me that you did take it long enough. There was a
discussion I recall about how long should you take the antibiotics if they
seem to be working and the consensus was you should take them until you feel
normal again. So the fact that you were not completely free of the steroids
to me would indicate you needed to be on them longer. But who knows? We are
still in the "testing" phase of this treatment.

Is your doctor willing to continue?

Joy
> I have been off of mine for about a month now. I was doing
> wonderfully. 100% better and tapering off of steriod inhaler.  The
[quoted text clipped - 8 lines]
>
> Lisa C.
NorthShoreCEO - 04 Dec 2004 00:52 GMT
Joy, that may have been an early discussion?  In my later email exchanges with Dr. Hahn, he said he would stop the treatment at 12 weeks and either the person would continue to show improvement in the following months, or would not.  

 Lisa,

 It isn't clear to me that you did take it long enough. There was a
 discussion I recall about how long should you take the antibiotics if they
 seem to be working and the consensus was you should take them until you feel
 normal again. So the fact that you were not completely free of the steroids
 to me would indicate you needed to be on them longer. But who knows? We are
 still in the "testing" phase of this treatment.

 Is your doctor willing to continue?

 Joy
 "Lissa" <lissan32@yahoo.com> wrote in message
 news:27df40bc.0412031352.1b41ca0c@posting.google.com...
 > I have been off of mine for about a month now. I was doing
 > wonderfully. 100% better and tapering off of steriod inhaler.  The
 > last day or so I have felt short of breath again.  I took my rescue
 > inhaler and it doesn't help much, but it never did.  Does this mean
 > that it isn't going to work?  Or did I not take the antibiotics long
 > enough? I took them for 14 weeks.  I guess I was just feel so great
 > and hopeful. I am not horrible, but do feel a bit of tightness.  Has
 > anyone finished the antibiotics and felt a bit worse afterwards, yet
 > still recovered? I know there are only a few of you here. Just not
 > sure where to post questions anymore. TIA!!
 >
 > Lisa C.
Joy - 04 Dec 2004 16:22 GMT
I read it at Jim's forum. That *might* have been this time last year when I
was deciding if I had been on antibiotics long enough.
Joy, that may have been an early discussion?  In my later email exchanges
with Dr. Hahn, he said he would stop the treatment at 12 weeks and either
the person would continue to show improvement in the following months, or
would not.

Lisa,

It isn't clear to me that you did take it long enough. There was a
discussion I recall about how long should you take the antibiotics if they
seem to be working and the consensus was you should take them until you feel
normal again. So the fact that you were not completely free of the steroids
to me would indicate you needed to be on them longer. But who knows? We are
still in the "testing" phase of this treatment.

Is your doctor willing to continue?
norman - 04 Dec 2004 07:25 GMT
> I have been off of mine for about a month now. I was doing
> wonderfully. 100% better and tapering off of steriod inhaler.  The
[quoted text clipped - 8 lines]
>
> Lisa C.

Maybe you're reducing your steroid too quickly. Try reverting your
dosage to the the amount you took before your latest reduction.

Regards
Norman Back
NorthShoreCEO - 04 Dec 2004 15:19 GMT
No, Lisa, not a good idea.  You said you were short of breath, you didn't say you were having an asthma attack.  Those of us who have gone through this know you'll have some good days and some days that aren't as good.  I just wouldn't taper off more until you've had several good days again.  

 Lissa wrote:
 > I have been off of mine for about a month now. I was doing
 > wonderfully. 100% better and tapering off of steriod inhaler.  The
 > last day or so I have felt short of breath again.  I took my rescue
 > inhaler and it doesn't help much, but it never did.  Does this mean
 > that it isn't going to work?  Or did I not take the antibiotics long
 > enough? I took them for 14 weeks.  I guess I was just feel so great
 > and hopeful. I am not horrible, but do feel a bit of tightness.  Has
 > anyone finished the antibiotics and felt a bit worse afterwards, yet
 > still recovered? I know there are only a few of you here. Just not
 > sure where to post questions anymore. TIA!!
 >
 > Lisa C.

 Maybe you're reducing your steroid too quickly. Try reverting your
 dosage to the the amount you took before your latest reduction.

 Regards
 Norman Back
 
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