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Medical Forum / Diseases and Disorders / Asthma / July 2004

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Anyone have adult onset asthma caused by exposure to one allergen?

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Lissa - 24 Jun 2004 14:05 GMT
I am just wondering this because I seemed to have developed asthma 5
years ago after having two cats for about 1 1/2 years.  I did not get
gradual worsening of symptoms, but got a bronchitis that turned into
asthma and it really just never went away.  So I am begining to wonder
if the episode of bronchitis caused it instead of the cats. I do have
an allergy to cats and have no pets whatsoever anymore, nor will I
ever. I have recently started having trouble again with my asthma and
I can not pinpoint a reason.  Except this year I had a new baby who
was in daycare one day a week all winter. HE brought home tons of bugs
and such. I ended up with bronchitis at least 5 times.  I now I am
suffering from a flare up and no asthma medication is helping, not
even the predinisone. So it makes me wonder if it is being caused by a
bacteria instead. I am not suffering from a cold now, but wonder if
all the bacteria from this winter is just not dead.  I ALWAYS feel
better after I take Zithromax from one of these episodes but after a
few weeks it flares again. Any ideas? TIA!!

Lisa
Lou Pecora - 24 Jun 2004 15:02 GMT
> I am just wondering this because I seemed to have developed asthma 5
> years ago after having two cats for about 1 1/2 years.  I did not get
[quoted text clipped - 14 lines]
>
> Lisa

I had something similar happen.  We have cats and I am allergic.  But I
never had trouble (never handle them -- although their dander does get
into most household things -- unavoidable).  Then about 5 years ago I
got a bad case of bronchitis and the asthma set in and stayed. My
alergist said the cat allergy was always there, but sometimes a
particularly bad irritation (like bronchitis) can trigger asthma and
then the inflammation does not disappear even when the acute disease
does.  I went on singulair about 4 years ago and it changed my life
making things possible again (like exercising) that were not with the
asthma.  I've noticed that even when I go off singulair my asthma does
not seem to flare up anymore.  Maybe the inflammation is finally gone
(although my doc said singulair does not work this way).  Anyway, the
bottom line seems to be that in the presence of an allergen an acute
flare up can trigger the onset of a chronic problem.  You don't
necessarily go back to where you were before the problem.

Hope that helps a little.

-- Lou Pecora  (my views are my own)

They laughed at Galileo. They laughed at Newton.
But they also laughed at Bozo the Clown.  -- Carl Sagan
daparty - 24 Jun 2004 20:47 GMT
the problem is , asthma is caused by many reasons. If you ask a real
proactive Dr , the majority of reasons onset asthma occurs is air pollution
. The one thing that is universal is asthma is going up in areas with higher
pollution . Thats not to say asthma can't or won't happen in other areas.
All one has to do is be near allot of traffic, work as toll collector, drive
a truck or live in a home close to all of the above ( truck or bus depot) or
drive a bike or run allot in traffic. I am telling people this because
initally even though I smoked I thought it was bronchitis or bed bugs or
roached or whatever. People wake up,  often if we damage our lungs we become
more sensitve to other things . I wish I never smoked but now when DRs see
many many people asking for asthma meds  , I am convinced more then ever ,
its the pollution that  making many people sick more then anything else.
People have come on to tell me they are sure its not the reason. It can
happen but look at your environment and pollution and work to stop industry
from killing our people and learn to use alternative vehicles in the future
and get our President to be more concerned.about our air.. The worse part is
you literally can't go out and exercise in many days with high particulate
rates.Your simply beat.

> > I am just wondering this because I seemed to have developed asthma 5
> > years ago after having two cats for about 1 1/2 years.  I did not get
[quoted text clipped - 37 lines]
> They laughed at Galileo. They laughed at Newton.
> But they also laughed at Bozo the Clown.  -- Carl Sagan
CBI - 24 Jun 2004 22:23 GMT
> HE brought home tons of bugs
> and such. I ended up with bronchitis at least 5 times.  I now I am
[quoted text clipped - 4 lines]
> better after I take Zithromax from one of these episodes but after a
> few weeks it flares again. Any ideas? TIA!!

Joy? Maureen?
Joy - 24 Jun 2004 23:34 GMT
> > HE brought home tons of bugs
> > and such. I ended up with bronchitis at least 5 times.  I now I am
[quoted text clipped - 6 lines]
>
> Joy? Maureen?

CBI, I know, I know. It is just that since I was cured, I don't expect to
spend much time here, you know?  But then I remember how badly off I was and
I do want to help others where possible.

Lissa, your observations that Zithromax helps could be a clue! Go to

http://www.asthmastory.com/  and read.

My trigger was thunderstorms (among other things), not cats, but the rest of
what you are saying is familiar. I had Pneumonia 4 times in 10 years for
instance. I *think* my trigger was established by living in a flooded house
when I had a respiratory illness.  Maureen has a similar history of
bronchitis and we are both now thankfully asthma free. It does sound to me
like you are like those of us with the kind of asthma for which the
researchers are on to a cure. But they are still in the testing phase and it
is not yet an approved treatment .So it is hard for me to watch people like
you post because I know you might have to wait years! Or maybe not, if you
are the kind of person who makes things happen. It is difficult (to say the
least) to find a doc willing to prescribe long term antibiotics, but you
should be aware of this research so you are first when it becomes protocol.
Better yet, see if you live near a doc who is on the list at asthmastory, be
proactive and make an appointment. Best of luck!

Joy
mcs - 25 Jun 2004 03:16 GMT
> > lissac67@yahoo.com (Lissa) wrote in message
> news:<e7ca6713.0406240505.231f1df9@posting.google.com>...
[quoted text clipped - 35 lines]
>
> OK , I just mildly read thru this again . Joy I live in flooded house. It
no longer floods because we put a waterproofed system but I still get asthma
when I have to shut the windows and swear its something in house . The
bottom line is it could be a number of things. I know what helps : CLLEAN
AIR and no what doesn't help : this house and polluted outside air
So my question to you , did you move? If the home caused your asthma?
Or did the doctor and meds cure you? I will go back to read that website,
thanks Steve
Joy - 25 Jun 2004 03:38 GMT
> > OK , I just mildly read thru this again . Joy I live in flooded house. It
> no longer floods because we put a waterproofed system but I still get asthma
[quoted text clipped - 4 lines]
> Or did the doctor and meds cure you? I will go back to read that website,
> thanks Steve

Steve,

The antibiotics "cured" me. In other words, my lungs no longer react to
"triggers" like ozone or mold or whatever it is about downtown Atlanta and
thunderstorms that used to set me off. I have no doubt that I could go back
to being asthmatic should I get infected again and I would not hesitate,
knowing what I know now caused my asthma, ordering antibiotics online if I
had to (that is no doctor would give me a script). But I had no life even on
steroids and the asthma meds had unacceptable side effects except for
Singulair. And I had no side effects from the long term antibiotics. That is
not true for most people. So each case is different.

There have been many discussions on this newsgroup in the past about who
should try antibiotic treatment. Since it is not protocol you are unlikely
to get your doctor to agree even if you bring in a stack of studies. And
since there is not currently a test to prove which individuals will be
helped, it is probable that you will have to wait. However, if you have no
life as I did not...................

Joy
CBI - 25 Jun 2004 18:09 GMT
> > lissac67@yahoo.com (Lissa) wrote in message
>  news:<e7ca6713.0406240505.231f1df9@posting.google.com>...
[quoted text clipped - 12 lines]
> spend much time here, you know?  But then I remember how badly off I was and
> I do want to help others where possible.

I just didn't want to be responsible for the stroke you would probably
have if I mentioned it first.

Signature

CBI, MD

Joy - 25 Jun 2004 18:46 GMT
> > CBI, I know, I know. It is just that since I was cured, I don't expect to
> > spend much time here, you know?  But then I remember how badly off I was and
> > I do want to help others where possible.
>
> I just didn't want to be responsible for the stroke you would probably
> have if I mentioned it first.

I HOPE I don't have a stroke! No, I wouldn't mind. Really. If someone where
to post in my place, I would gladly get on with my life (now that I actually
have one).
NorthShoreCEO - 25 Jun 2004 19:24 GMT
ROFLMAO - very funny!!  Actually, it would be a welcomed stroke.
You're posting here regularly anyway, so
if you now feel comfortable enough with this theory, then PLEASE
do so, and also feel free to refer them to
the asthmastory.com site.  It would be appreciated more than you
know.

> I just didn't want to be responsible for the stroke you would probably
> have if I mentioned it first.
>
> --
> CBI, MD
NorthShoreCEO - 25 Jun 2004 17:19 GMT
> > HE brought home tons of bugs
> > and such. I ended up with bronchitis at least 5 times.  I now I am
[quoted text clipped - 6 lines]
>
> Joy? Maureen?
NorthShoreCEO - 25 Jun 2004 17:34 GMT
Sorry, CBI - didn't know I was being paged here and only read
when I get a heads up.

Lissa is also posting on the asthmastory.com site and it  does
sound like she's got asthma
that might be caused by either mycoplasma or chlamydia
pneumoniae.  Her doctor has referred
her to a pulmonologist and she's going to print out some studies
and bring them to him.  Hopefully
he'll be open minded and treat he with longer term antibiotics.
The fact that she got bronchitis
at least five times is a big red flag and brings back memories of
my own.

CBI - if you're willing to treat people (or already treating
people) with longer term antibiotics if
they have asthma that isn't well managed and are sick all the
time like this, please drop me a line
and let me know if we can refer people to you.  We haven't found
anyone in your area yet
that we can send people to if their doctors aren't willing to
look into the research at all, so it
would be nice to know we've got at least one doctor we can refer
people to.

> > HE brought home tons of bugs
> > and such. I ended up with bronchitis at least 5 times.  I now I am
[quoted text clipped - 6 lines]
>
> Joy? Maureen?
Joy - 25 Jun 2004 18:44 GMT
> CBI - if you're willing to treat people (or already treating
> people) with longer term antibiotics if
[quoted text clipped - 6 lines]
> would be nice to know we've got at least one doctor we can refer
> people to.

Just like you Maureen . The direct approach!  : )
NorthShoreCEO - 25 Jun 2004 18:55 GMT
LOL.  Hey, I figure it's worth a shot if there's a possibility it
may help someone.  The worst
he can do is say no.  It took me months to find a doctor in the
U.K. for somebody, so I'm
hoping takes less time to find someone on our own turf.

> > CBI - if you're willing to treat people (or already treating
> > people) with longer term antibiotics if
[quoted text clipped - 8 lines]
>
> Just like you Maureen . The direct approach!  : )
Joy - 25 Jun 2004 19:52 GMT
> LOL.  Hey, I figure it's worth a shot if there's a possibility it
> may help someone.  The worst
> he can do is say no.  It took me months to find a doctor in the
> U.K. for somebody, so I'm
> hoping takes less time to find someone on our own turf.

Smart thinking. How did you ever find someone in England?
NorthShoreCEO - 26 Jun 2004 12:52 GMT
Joy, missed this post yesterday.

I emailed one doctor at a time starting at the top layer of the
European Respiratory Society.
It would generally take several days for them to respond, but
almost all of them very
graciously took the time to do so.  I just explained this womans
situation, asked them to
look at some research (I provided several links), and asked if
they would be willing to
either treat her, or at least contact Dr. Hahn for more
information in consideration of
treating her.  It was a somewhat arduous process because they're
busy and I wouldn't
hear back for several days.  As they referred me to someone else,
I'd write that person, etc.
At one point, I found a doctor who said that if she came in to
see him, "he'd see".  When
pressed further for some clarification that "he'd see" meant he'd
be open to treating her
with antibiotics, he wouldn't commit.  She wouldn't go because if
she went to him she'd be
stuck and unable to go to anyone else at that point.  I can't
explain this fully because I'm
still confused about their health system.  In the end, she was
referred to the same person
by three different doctors, and it happened to be a doctor she'd
seen anyway, who tested
her and found high titers for mycoplasma, and gave her twelve
weeks of Clarithromycin
(Biaxin).  Well, we know based on what some doctors are
prescribing for this, and based
on what several have posted, that twelve weeks is fine for
Azithromycin, but it takes nine
months to a year on Clarithromycin - so she didn't get any better
and he wouldn't do more.
In the end, I found a doctor who said if she was released from
her current doctor (not
the doc previously mentioned), and from her private doctor, he
would see her and treat her.
The problem is, the one doctor has refused to release her,
sending her instead for another
round of tests.  It's been very frustrating for her and I'm sure
being trapped in your HMO,
you can relate.

> > LOL.  Hey, I figure it's worth a shot if there's a possibility it
> > may help someone.  The worst
[quoted text clipped - 3 lines]
> >
> Smart thinking. How did you ever find someone in England?
Joy - 26 Jun 2004 14:57 GMT
> Joy, missed this post yesterday.
>
[quoted text clipped - 41 lines]
> being trapped in your HMO,
> you can relate.

It is absolutely amazing what you have gone through. I admire your
dedication - I know I looked around Atlanta unsuccessfully for a while for
Karen, You remember. She's still hoping for help also. She has also tested
positively for C Pneumonia, but her doctor doesn't think she should take the
antibiotics because she is now sensitive to most
of them, having been on them so often in short bursts throughout her teens.
If she had been treated appropriately from the beginning with long term
antibiotics, she wouldn't have all these continuing problems IMHO. Jim
Quinlan said his history was similar. He was also always sick and on
antibiotics several times a year, but since he got over the asthma 10 years
ago, he is never sick and no longer needs any meds including the several
times a year antibiotics.

I love it every year when my HMO announces their profits are up so many
percent over last year. They are pretty good about surgery, I have to say.
They just have removed all the drugs from the approved list and I find that
frustrating. The last time I looked, they had nixed all the asthma meds
except Singulair and Advair and generic albuterol. They no longer cover any
reflux meds or antihistamines because there are over- the- counter drugs
available (Prilosic(sp) and Claritin), and you are out of luck if those
don't work for you. They would cover at 100% an in home light unit for
Psoriasis, but..........they would only let you get it from their sources
and none of their sources carry one of those. So, I had my tonsils removed
which sounds like a crazy fix, but there were small studies out there that
indicated it would work. Like I said, they are good about surgery.
CBI - 28 Jun 2004 03:34 GMT
> At one point, I found a doctor who said that if she came in to
> see him, "he'd see".

I think that is likely to be the best you wille ver get out
of a doc. I can't imagine anyone being willing to commit to
treat a patient that they have had no contact with.

> The problem is, the one doctor has refused to release her,
> sending her instead for another
> round of tests.  It's been very frustrating for her and I'm sure
> being trapped in your HMO,
> you can relate.

There's a fascinating concept. Obviously, in the US some
people are left with very limited choices of who they can
see but it is never up to the doc to release the patient.

Signature

CBI, MD

NorthShoreCEO - 28 Jun 2004 05:05 GMT
> I think that is likely to be the best you wille ver get out
> of a doc. I can't imagine anyone being willing to commit to
> treat a patient that they have had no contact with.

I was surprised by the doctor who said he would treat her.  I was
expecting and
waiting for something along the lines of, "I would be open to
treating someone with this regimen if, after looking at her
medical history, it
appeared her problems began with her illness."  That was going to
be good
enough, I thought, since she'd already been tested for mycoplasma
and titers
were elevated enough where the doctor said he knew she'd had it.
Given her
history, it seemed a safe bet that if someone was open to
treating someone, odds
would be good she would be that someone.  Unfortunately, the
"we'll see" has
been said so many times by doctors who later indicated they never
were open to
it at all, that I was looking for something more than that.  It's
standard fare for
people who are deferring their "no".  As a parent, I've used the
"we'll see"
myself when I've been too tired for the debate that would follow
if I'd said
"no way".

> > The problem is, the one doctor has refused to release her,
> > sending her instead for another
[quoted text clipped - 6 lines]
> people are left with very limited choices of who they can
> see but it is never up to the doc to release the patient.

I asked her if she would be responsible for paying for those
tests, and she said
no, so you can't even use the "I can't afford it" argument over
there.  Many
people are intimidated by doctors here, but in the end, we have
the right to
walk out and go find someone else if we're not happy with our
doctor.  I get
the sense from some people in the U.K. who have problems, that
they're
actually afraid to say anything or ask any questions that may
offend their
doctor, or they may never be released.  I imagine there's some
mechanism
in place to dispute that decision, but the red tape must be
horrific.
SimonDS - 01 Jul 2004 19:12 GMT
in my experience most people in the UK do ask questions and can change
doctors if they wish. the doc won't like it but they can. in fact only last
week the government here advertised the fact patients have a choice to
choose there hospital and doctor

> > I think that is likely to be the best you wille ver get out
> > of a doc. I can't imagine anyone being willing to commit to
[quoted text clipped - 52 lines]
> in place to dispute that decision, but the red tape must be
> horrific.
Joy - 28 Jun 2004 05:08 GMT
Hanging out at Cd++ with the Germans? One more string quartet! just ONE!
". I think that is likely to be the best you wille ver get out
> of a doc
mcs - 26 Jun 2004 01:32 GMT
> LOL.  Hey, I figure it's worth a shot if there's a possibility it
> may help someone.  The worst
[quoted text clipped - 16 lines]
> >
> > Just like you Maureen . The direct approach!  : )

The reason Drs. don't like to prescribe anti biotics is because people build
up an immunity against its effectiveness. Until more proof of these
correlations become known , one is at least able to choose the few options
available. I find I get asthmatic in both my home and bad air days so I am
not sure the correlation with infections holds true for me. I just need a
clean city to go to but no one offers any help and trust me I need some . I
feel like a failure because I can't do it on my own sometimes. yet I have
come along way from anxiety and cigarettes .
NorthShoreCEO - 26 Jun 2004 02:14 GMT
I was on antibiotics four to six times a year anyway, and that's
often the case with people whose asthma was the result of
bacteria.
I felt it was better to go on the antibiotics for a longer than
normal
period and stop the cycle,   I haven't been on antibiotics in
over a year - something that hasn't been the case for me in at
least twenty years.

> > LOL.  Hey, I figure it's worth a shot if there's a possibility it
> > may help someone.  The worst
[quoted text clipped - 25 lines]
> feel like a failure because I can't do it on my own sometimes. yet I have
> come along way from anxiety and cigarettes .
Joy - 26 Jun 2004 06:19 GMT
> I was on antibiotics four to six times a year anyway, and that's
> often the case with people whose asthma was the result of
[quoted text clipped - 48 lines]
> yet I have
> > come along way from anxiety and cigarettes .

Well I have a couple of thoughts. The fact that you have triggers like
pollution is immaterial. Your lungs are responding and they will stop doing
that if you no longer have the infection if that is the cause of your asthma
(if you can use my case as a tests case).  I had triggers and my reading on
that says it means little. It appears they were related to some complex
baterial/sensitively reaction now over since I got over the infection.

It will take some time to figure out the half of asthmatics who will be
helped IMHO. I personally didn't suffer from anxiety disorders or a smoking
habit - as a matter of fact, I had some real problems with my Chronic
Bronchitis diagnosis because I didn't smoke and I realized that only 1% of
nonsmokers got Chronic Bronchitis.

Ok, so what it comes down to is this: if you are going to be cured of asthma
by antibiotics, are you going to walk away? The research by Docs like Dr
Hahn say that you are going to have to take antibiotics to get better if you
are in the group who has C or M Pneumonia so you are going to sacrifice
yourself - how noble!. Perhaps you are hoping for another "fix" but if that
is the cause of your bronchospasm, do you think people going to ignore the
cure?  In other words, if you have an infection you can't get over, are you
going to ignore it and not treat it, the only hope you have coming? Even for
the common good! I wouldn't because there isn't a damn soul out there paying
my bills and I refuse to live as did, SOB. On the other hand, perhaps your
asthma is the result of some NOt+YET+discovered pathogen or allergen and you
are now no longer having to face this choice. That would result in the
accompanied problem of tracking on the research yourself because no one out
there has stepped into the spotlight to relieve you of your duty to cure
yourself. You have asthma, a not fixable disorder.You might think me cruel,
but this is how I lived (or didn't) for 10 years. So, perhaps you are in the
other half.  That was actually the half I thought the medical profession was
focused on - and I assumed my own case was years from being solved. Thank
you again Dr Hahn.

Joy
mcs - 28 Jun 2004 00:56 GMT
Joy,
You lost me in your anger  Sob? ? ? and I am not sure you were talking to me
but if its the air inside this house, isnt one option moving to better
house? I realize its difficult but it might be better then taking
antibiotics. I do get sensitve to dust and probably whatever hell is in this
house that is setting me off but no one cares. I feel almost to have a break
down so someone can send me to cla arrangement in another town. First I
might have to claim a breakdown in a clean city. If all that fails , maybe I
will try antibiotics. Its all very interesting. and I didn't say it wasn't I
am just coming off a lung infection and pain on my right side and was given
antibiotics so Its not like I don't believe. I just know when I am in clean
air I am ok. Asthma sucks and when your sick no one cares, not a soul. I
pleaded my case and there is just so much I can do. I seriously hope I can
get where I need because asthma sucks and yes its great you never smoked.
really , I was too dumb at that time to rationalize.

> > I was on antibiotics four to six times a year anyway, and that's
> > often the case with people whose asthma was the result of
[quoted text clipped - 83 lines]
>
> Joy
Joy - 28 Jun 2004 03:35 GMT
> Joy,
> You lost me in your anger  Sob? ? ? and I am not sure you were talking to me
[quoted text clipped - 11 lines]
> get where I need because asthma sucks and yes its great you never smoked.
> really , I was too dumb at that time to rationalize.

I will admit to being angry at all the wasted time and all the road blocks
(I'm sure they think they are well meaning) folks throw up when the
antibiotics for asthma topic comes up for discussion. But how can I be angry
at you? We have the same problems. Not only do you have asthma, but then
there is the financial loss you suffer with the flooding. Boy, do I know
about that. Maureen has had a similar experience and I know she also knows
what it is like. You.don't feel well enough to cope with it all. I had
surely been there.

I have no way of knowing if the antibiotic cure will benefit you (short of
your going to National Jewish and having a test). I just don't want to see
anyone throw their one chance out because they  are unwilling to take long
term antibiotics. People like Dr Hahn have been facing this for years. They
actually have the answer for so many of us, and no one is listening because
the "Fix" involves antibiotics. The fix is the fix. You can turn it down,
but then you have to deal with your ongoing condition if your problem is C
or M pneumoniae. This is not a big problem for the asthmatics who are well
controlled on meds. But you aren't in that situation if you can't live in
your own house. So then you have to deal with the unknown (the antibiotics
may or may not help) and the unwillingness of your doctors to prescribe the
meds. Most people just give in and don't purse the hope of a cure. It truly
is a shame. Maureen and I were comparing notes once. We are similar in that
we don't let things like that stop us. People may not appreciate being mowed
over as we head for our goal, but think of the benefits of knowing people
like us. Not only did we prevail, but we hang out here hoping others
suffering can make it.

SOB= Short of breath. I forget that not everyone knows that. Been posting
too many years.

I forgot to answer your question several posts back. I did move out of my
flooded house (Kansas), and I didn't get better, but worse. Could be because
I moved to Atlanta, which is not known as having clean air. I did get better
when I moved several miles south of ATL, but wasn't cured. Singulair helped
too and I did start to take that about 5 years ago. Now though, I need
nothing. I lay in bed in the morning and JUST breathe. You don't know how
great it feels -effortless.

Let me fill your in about some of the past posts relating to this issue. The
researchers into asthma/infection connection *think* they can help half the
asthmatics. It isn't clear to me if they don't think they can help the rest
because the cause of their asthma is something else, or if the damage due to
the infection (remodeling) has become permanent so it is basically too late.
I have read several studies which suggest that EVERY kid with asthma-like
symptoms should be placed on long term antibiotics in order to prevent their
condition from becoming permanent. On the other hand, I have read that some
people *think* asthma is caused by antibiotic use which results in allergic
inflammation. Stay tuned. It isn't likely either side has the whole story.
You are really only dealing with your asthma though so you need to know how
you are the same or different from the people who are helped. POST at Jim
Quilan's site. Ask lots of questions! See how their onset was like yours. Or
the triggers.Your goal is to cure yourself because believe me, no one in the
medical profession is going to step up to the plate in a timely manner. I
certainly do believe the researchers will solve the problem - I just don't
think they will do it in the near term.

Meanwhile, you are pretty much right that you have no help coming IMHO.
Everyone seems to think that asthma is SO WELL CONTROLLED on current
medications, that you are just a complainer. I know that isn't true because
it happened to me.  I had a  coughing asthma problem. Coughing in my sleep,
coughing around perfume, coughing, coughing, and more coughing. I never
rested so I was OFTEN dog tired. The docs told me I should have been more
controlled on the meds, but my point was, if people are so well controlled,
why do 5000 people DIE every year in the US of asthma? If you are not well
controlled in your house, why do you think those asthma meds aren't working
for you? You don't have to answer. I know the frustration. Just don't ignore
the possibility that your asthma is caused by infection. I had triggers that
appeared allergic (high ozone days, wet carpets, perfume, thunderstorms). I
was also adult onset after a respiratory problem and my research told me
THAT indicated my problem was infectious. Maureen has more contact with more
people who are helped and not helped than I do. I know for a fact she will
help you determine if you are like the people who are helped. She works very
hard to help everyone who posts in the forum at asthmastory.

Joy
NorthShoreCEO - 28 Jun 2004 05:16 GMT
Thanks for the vote of confidence, Joy - you give me more credit
than I deserve.

All I'll add to the post is that flooded living areas and mold
problems seem to
have been the onset of several people's problems, and moving out
of the home
didn't do much to help that.  I believe Jim Quinlan's asthma
began shortly after
their basement flooded, and he even changed states thinking FL
would be
better than MI - only to find it did no good.

Jim didn't suffer from allergies, but I do and they got more
severe as time went on.
I used to joke that by the time I was sixty, I'd probably be
allergic to everything
but perch (I hate perch) and the color brown (I hate brown).
It's almost as though
the body just becomes more and more sensitive to everything
around you.

When I took the 12 week course of antibiotics, the asthma
resolved, my sinus
problems cleared up about 85 to 90% and my allergies went from
severe to mild.

My basement flooded just around the time that I went to see Dr.
Hahn last year.  It
was a blessing actually, because we discovered mold from two
foundation cracks that
had resulted in flooding about five years earlier.  (I have water
issues....lol)  If the mold
had remained there, it may have affected the outcome for me.  So
flooding was a good
thing.  State Farm telling me that if I submitted my claim my
policy would be cancelled,
was a bad thing.  God, I hate the insurance industry.

I think if the environment - the dirty air - really caused
asthma, then the people living
in NYC following 9-11, and those living in CA with all those
fires, would have a higher
rate of asthma, and I'm not sure that's the case.  It might add
to one's breathing
difficulty, but I doubt it's the cause.

> > Joy,
> > You lost me in your anger  Sob? ? ? and I am not sure you were talking to
[quoted text clipped - 94 lines]
>
> Joy
Joy - 28 Jun 2004 05:27 GMT
> I think if the environment - the dirty air - really caused
> asthma, then the people living
[quoted text clipped - 3 lines]
> to one's breathing
> difficulty, but I doubt it's the cause.

I  don't know. Those firefighters are clearly suffering. Even though EPA
assured them they would  not. We are still waiting for the 3 year background
study of normal levels of >2micron stuff. In  a way, I really would hate to
see those of us who have asthma benefit by this horrific experience.
mcs - 01 Jul 2004 00:24 GMT
> Thanks for the vote of confidence, Joy - you give me more credit
> than I deserve.
[quoted text clipped - 42 lines]
> to one's breathing
> difficulty, but I doubt it's the cause.

North Shore,
Do me a favor, try going to Hawaii and walk along the shore or go to the
mountains near Denver or on the North coast of California ( if you can
afford it) and see if that don't help you. I have started to write to a few
people ( beg for a place eventually) and they came there from other areas
and they improved.
Your right about it may not cause our condition but its definitely not a
neutral to me , its a inflammatory adding to the problem. I have so many
links showing how pollution is worsening and now the number of prescription
for singulair in many northeastern cities is approaching the tOP! so I
definitely see the connections. I didn't need the mds who suggested that the
air is now killing tens of thousands of US citizens each year. I saw the
numbers of people stop running in this area. I saw my reaction in comparing
the breathing after a run in Philly to a run at the shore or in Maui. So
while I believe my flooded basement is one major factor and my increasing
sensitivity to other things as you described, I am not even near ready to
agree about your thoughts on the environment. So I respectively disagree.
Steve

> "
mcs - 29 Jun 2004 12:07 GMT
Hi Joy
I deleted some lines and thanks for your response.

"posts back. I did move out of my
> flooded house (Kansas), and I didn't get better, but worse. Could be because
> I moved to Atlanta, which is not known as having clean air. I did get better
> when I moved several miles south of ATL, but wasn't cured. Singulair helped
> too and I did start to take that about 5 years ago. Now though, I need
> nothing. I lay in bed in the morning and JUST breathe. You don't know how
> great it feels -effortless.

Well its amazing. I went to the shore for a few weeks and not to my
amazement really, the air coming off the ocean stopped my asthma. I had no
days with asthma! Of course I was not in the house. I think that pollution
and global warming is definitely influential. In my city we are bombarded
with Temple Lung Center commercials, motorized wheel chairs and other
hospital and drug tainted commercials and I don't think its an accident.Yet
while I complain about the air in Philly and I see all the people in the Drs
office asking for meds by the way for asthma, there is no or very little
growing concern. My system is soo sensitve to the air, and I kid you not. I
can go to the park and tell you if the air is clean or not almost to an
exact science. ( we have the air grading system around here for five
pollutants) For the past three weeks we had one or two days only of clean
air. Many parts of the nation had many more good days. I see how this
affects my asthma. Yet if you have a home, would you give up all your wordly
possessions just to move in cleaner air? You might say yes, but to also move
to an apt instead of a home? You might say yes, but I like to talk to myself
and go kicking and screaming. In a way I want people to agree , I want to be
able to live in my town happy. Going to a foreign city to me with no friends
or relatives is soo whatever but its getting more likely it will happen.
About the antibiotics , thanks for the story. I was taking antibiotics for
the lung affection and while coughing and stuff stopped, my asthma did not.
Maybe I need to take the right kind?  Take care and thanks for clearifying
your response. Glad your symptom free, which is totally amazing .

> Let me fill your in about some of the past posts relating to this issue. The
> researchers into asthma/infection connection *think* they can help half the
[quoted text clipped - 33 lines]
>
> Joy
Joy - 29 Jun 2004 15:40 GMT
> Hi Joy
>  I deleted some lines and thanks for your response.
[quoted text clipped - 33 lines]
> Maybe I need to take the right kind?  Take care and thanks for clearifying
> your response. Glad your symptom free, which is totally amazing .

I had a similar experience. Went to Florida and I was absolutely amazed how
much air I had when I got out on a boat. I was just there 2 weeks ago and I
didn't have any trouble with my sinuses (that has not stopped even though
the asthma/coughing/sob thing has). I think that I will have to retire
there! I worry that the infection is lurking in my sinuses, waiting to do me
in another day!

When I had asthma, I could tell you if it was going to rain or not and I
could tell you if it was a high ozone day without looking it up. Because of
the type of asthma I had, moving was only a short term fix. After I moved
south of ATL I was better, but I started going downhill and finally was
diagnosed with Chronic Bronchitis. I believe you will find many asthmatics
have a short term improvement when they move, only to return to being
asthmatic after they have been in a location for awhile. So I don't that I
could recommend that moving would actually help you in the long run based on
my experience.

Joy
mcs - 30 Jun 2004 00:08 GMT
"Joy" <none@nospam.com> wrote in > > Maybe I need to take the right kind?
Take care and thanks for clearifying
> > your response. Glad your symptom free, which is totally amazing .
>
[quoted text clipped - 5 lines]
> in another day!
>   Well there are many parts of Florida hot, it still has clean air
probably in part from the air coming off the clean water. West and or east.I
would love to go to the shore to live but apparently many other people are
discovering this and prices have shot thru the roof. The one negative, is
while jogging along the beach saw ten bags of hospital waste wash ashore. in
various placeJust think about deep breathing that.

> When I had asthma, I could tell you if it was going to rain or not and I
> could tell you if it was a high ozone day without looking it up. Because of
> the type of asthma I had, moving was only a short term fix.
Well there are some good cities without ozone and rain never bothered me.
Often fronts that bring cool air from the ocean or out west start out as a
storm.

After I moved
> south of ATL I was better, but I started going downhill and finally was
> diagnosed with Chronic Bronchitis. I believe you will find many asthmatics
[quoted text clipped - 3 lines]
> my experience.
>   Well Joy not to Atlanta. Atlanta has a negative pollution rating.
American Lung association gives Philly an f and Atlanta not much better if I
remember
> Its too bad we have to go thru all this but its what we have to do but its
good your getting some relief. Northern California is suppose to be good and
or but your talking huge money. Iowa or Idaho , like Boise is suppose to be
a nice city. If anyone wants to go let me know. lol>
mcs - 29 Jun 2004 23:57 GMT
"> > Let me fill your in about some of the past posts relating to this
issue.
> The
> > researchers into asthma/infection connection *think* they can help half
[quoted text clipped - 25 lines]
> >
> > Meanwhile, you are pretty much right that you have no help coming IMHO.

  Well I am getting to a point that medicare is going to have pay or help
pay for meds. If they helped me to move or if the Govt understood some stats
that say asthma is increasing and tens of thousands might die just from
breathing our air ( yes the studies are there now) then why can't they see
the costs for outweigh the savings? Some people are just too sensitive and
some people might rightfully be normal and just experiencing a reaction from
bad surroundings. Right now my next move is to get carpets cleaned real good
. I already tore the ones out in my room.Personally I wish I could go inside
my duct system with ammonia and clean the damn things myself , can you
imagine how much dirt would be in there?
I remember seeing a piece on nightly news of allergy free places to live in
Arizona. I have become sensitive to many things but the worse is the general
condition of the air in the city. About why no one does anything or cares? I
have no idea, its not like there isn't any correlations between the smog and
the rising asthma. Its just that we are still to insignificant a number to
dictate any concern. People with money just move, they don't complain
mainly. Again as for the infection angle, this and moving are my only two
salavations although a move is most likely but then I will have practically
no worldly possesions and which city? lol  just talking to myself.
> > Everyone seems to think that asthma is SO WELL CONTROLLED on current
> > medications, that you are just a complainer. I know that isn't true
[quoted text clipped - 23 lines]
> >
> > Joy
Joy - 30 Jun 2004 01:04 GMT
>    Well I am getting to a point that medicare is going to have pay or help
> pay for meds. If they helped me to move or if the Govt understood some stats
> that say asthma is increasing and tens of thousands might die just from
> breathing our air ( yes the studies are there now) then why can't they see
> the costs for outweigh the savings?

Did you see the court case decided today about the workers in the popcorn
factory who claimed the "butter" was giving them respiratory problems? No
one from the gov't is going to help you, not even the courts if you claim
externalities. Snog is an externality.

Some people are just too sensitive and
> some people might rightfully be normal and just experiencing a reaction from
> bad surroundings. Right now my next move is to get carpets cleaned real good
[quoted text clipped - 10 lines]
> salavations although a move is most likely but then I will have practically
> no worldly possesions and which city? lol  just talking to myself.

That is all I can offer as advice. If you don't have an infection, I don't
believe I have read any other research I find compelling to suggest to you.
I am sorry.
mcs - 01 Jul 2004 02:35 GMT
> >    Well I am getting to a point that medicare is going to have pay or help
> > pay for meds. If they helped me to move or if the Govt understood some
[quoted text clipped - 7 lines]
> one from the gov't is going to help you, not even the courts if you claim
> externalities. Snog is an externality.

HI Joy,
No I did not . I realize that but I didn't realize America dealt with
problems by not going over the variables. It has been the rule of thumb in
this topic to keep the status Quo more or less and then let the chips fall
wherever .  However if the general perception starts to change , for
instance Philly area is losing population, and lots of people will make
noise and not go down quietly, perhaps they will add one and one up and
realize just because the news media ignores it, this policy we have, with
coal and oil might actually harm more people then it helps .  The people are
smart and will get the needed information to survive and in fact be more
proactive if the city and govt and news reporters think it will hurt the
city by analyzing this. To hear the wonderful and warm forecast when the
pollution links to quality charts for the day say WARNING is almost too
unbelievable to understand. How this country is better by killing off its
citizens or making them sick, is way beyond me.

>  Some people are just too sensitive and
> > some people might rightfully be normal and just experiencing a reaction
[quoted text clipped - 24 lines]
> I am sorry.
>  No problem, I didn't say I didn't believe , I just read with open mind.
thanks for your take on this and continued good health. Steve
Joy - 02 Jul 2004 01:38 GMT
> > >    Well I am getting to a point that medicare is going to have pay or
> help
[quoted text clipped - 59 lines]
> >  No problem, I didn't say I didn't believe , I just read with open mind.
> thanks for your take on this and continued good health. Steve

This is where you are going to have some trouble with your argument. Asthma
rates are not going up, but have stabilized. It isn't that I don't agree
with you, I just don't think you can prove it. And again, people think you
are just fine as long as you take your meds. Right.

I wanted to tell you about Arizona before I leave this thread. The WebMD
asthma board is monitored by Dr Enright who lived in Arizona and there was a
lengthy discussion there several years ago about how asthma deaths were
increasing there . There was speculation  the reasons that I can't recall,
so you might try and locate that thread. They have a search engine to aid
you. Basically though, most people with asthma find that if they move, they
have several good months and then they relapse.

If you live in Georgia, you can get a Password at your library which will
allow you to search databases like Medline. Perhaps you have something like
that there. You might want to keep up with the latest research - just
because you can't live in your own house. Medscape is also good, and they
will send you a newsletter if you subscribe. You never know when your answer
will surface!

Joy
mcs - 28 Jun 2004 01:01 GMT
Ps. I called one of those places on the list for cleaning duct work etc that
guy previously posted about. Like I alluded to  beforeI got seven different
responses . Now who among you will believe a guy who takes an hour of tests
and sends them to laboratory for over 1000 dollars? And you still don't have
any reassurance of any resolve? But then again I can have my chimney
sweeped, my duct work cleaned with camera inside it and sprayed with anti
mold stuff because the last time they sprayed it they sprayed the wrong
stuff not epa appraoved and likely to cause me worse problems. Ok so what
else? I can have home engineer , or a new filtering system. or what else?
Heck I heard it all and you know whats weird , few of these companies work
affordably or guaranteed they will find whats wrong or work together. So
that nap../// ?? whatever its called is a loosely put together of people who
can't provide good affordable options.

> > I was on antibiotics four to six times a year anyway, and that's
> > often the case with people whose asthma was the result of
[quoted text clipped - 83 lines]
>
> Joy
CBI - 28 Jun 2004 04:19 GMT
> CBI - if you're willing to treat people (or already treating
> people) with longer term antibiotics if
[quoted text clipped - 6 lines]
> would be nice to know we've got at least one doctor we can refer
> people to.

Before you get too excited I don't think I am as much of a
convert as you are hoping. The good news is that I have
never been  as against the theory as I have been painted (so
some of my apparent motion on the topic is illusionary). The
bad news is that I am not as completely sold as you might
hope. I am sure there is a subset of asthmatics for whom
antibiotics would be beneficial. I doubt it is as high as
the 50% figure that gets quoted a lot but probably is a
substantial percentage. Lissa has similar characteristics to
the patients in the studies that found rates as high as 50%
(which are not typical of all asthmatics) so that is
probably about the shot she has.

I would contrast her case to Mr. Stults's (at least as they
are described here). She can site a specific onset to her
symptoms following an adult respiratory infection and her
boughts are described more as bronchitis with the primary
treatment being antibiotics with a good, although short
lived, response. She also implies that she has not done well
on aggressive conventional therapy. In MS's case his
symptoms have been long standing (possibly starting in
childhood) and  not identified as starting after an
infection. It sounds like his doctor may just believe that
asthma exacerbations should be treated with antibiotics and
so it is not as clear what is going on. His past responses
to non-antibiotic regimens and his current apparently good
response to a conventional regimen also suggest a
non-infectious cause. His life time of respiratory symptoms
without an x-ray  gives me pause about the adequacy of his
care to date. While infection was one of the first things I
thought of with her I actually do object to it being
suggested so vociferously with him (but didn't feel up to
dredging up old arguments).

Obviously, the histories we have here are very incomplete
and many more details would be raised and confirmed in a
face to face meeting. I'm not saying MS shouldn't be tested
and possibly treated or that Lissa definately should be. It
is just that as the stories are stated now I would be much
more enthusiastic about treating her than him.

To get back to your question: The short answer is that yes,
I would certainly consider it. Her story sounds good for
having asthma with an infectious cause and the responses to
azithromycin are encouraging. It would probably be a good
idea to send the blood studies but I am not sure how much
the results should affect the decision to treat since we
know so little about the predictive values. I'd bet that the
negative predictive value of the test in a person with an
approximately 50% pretest probability is not low enough to
exclude the infection. Things like a history of smoking,
non-compliance with following a conventional regimen, and
(my perception of her having) unrealistic expectations would
make me less likely to treat.

On a related note - there has been something that I have
been curious about: Do you get many people complaining of
having problems getting prescription plans to cover the
prolonged courses of antibiotics?

--
CBI, MD
Joy - 28 Jun 2004 05:17 GMT
> On a related note - there has been something that I have
> been curious about: Do you get many people complaining of
[quoted text clipped - 3 lines]
> --
> CBI, MD

Well, I live here in CDC county. The answer is YES, you can't get a
prescription and the response I was given is it has to do with protocols or
"those are just studies".. But, the docs who I have asked at CDC say if the
patient needs antibioitics, they should get antibiotics. So what seems to be
going on here is docs are translating the CDC call to reducing antibiotics,
to no antibiotics.

Joy
CBI - 28 Jun 2004 13:59 GMT
> > On a related note - there has been something that I have
> > been curious about: Do you get many people complaining of
[quoted text clipped - 10 lines]
> going on here is docs are translating the CDC call to reducing antibiotics,
> to no antibiotics.

I was referring to the insuranced coverage after the doc has tried to write the rx.

Signature

CBI, MD

Joy - 28 Jun 2004 15:10 GMT
> > > On a related note - there has been something that I have
> > > been curious about: Do you get many people complaining of
[quoted text clipped - 12 lines]
>
> I was referring to the insuranced coverage after the doc has tried to write the rx.

Sorry,

I have not heard of people having that trouble.

Joy
NorthShoreCEO - 28 Jun 2004 05:49 GMT
I can't speak to Mr. Stultz's case, because I admit I didn't read
through his post carefully, due to a heavy workload last week,
but I do want to say something about childhood asthma when one's
childhood was eons ago.

I met with Dr. Hahn for nearly three hours and I couldn't recall
being really sick with asthma following the illness.  I recalled
being really sick a couple of times, but in those days the doctor
either came to our house (yes, I'm older than dirt), or
prescribed over the phone.  I remember being winded when I was a
kid, though not sure when that started, and then having allergies
and then having a full blown asthma attack when I was in my
teens.  Dr. Hahn felt the asthma was probably present during the
winded years, but not fully presenting itself.   He uses the
phrase "cautiously optimistic" a lot.  He didn't use that in my
case.  He said he was fairly certain the antibiotics would NOT
resolve my asthma because I'd had asthma for so long, and because
the asthma didn't appear to be really related to any illness, and
because my son had exercise-induced asthma and he felt it could
be hereditary because of that.  We were both hoping my asthma
would improve so it would be well managed and the quality of my
life would improve.

So much of this is based on memory which is faulty.  I thought a
lot about the illnesses I had as a child after my visit with Dr.
Hahn, and I now think I may have had pneumonia way back then.  I
know at one point I was so sick that I felt just as I did when I
got pneumonia as an adult, only the doctor was very busy and
prescribed antibiotics over the phone.  Many of them did that in
those days - at least in Chicago.

And then later I recalled having had pneumonia about six years
ago.  My doctor tested me and told me I had mycoplasma.  Then my
younger
son got it and his doctor didn't test  him, but called it walking
pneumonia.  We spent the week in bed together watching television
and sleeping.
It was the following fall when he started football and had to run
sprints that he began gasping for air.

That's my long-winded way of saying in adults who are in their
40s or older, it's a tough call to put the pieces together.
You're right saying the cases are never cut and dry - less so in
cases where it starts when you're a kid - but the possibility
does exist.   There have been many studies done on this in the
pediatric arena, and the findings are the same as with adults.
Well, if that's true, then it stands to reason that you can go
untreated for a long long time, as I did, and still be treated at
some point when you're an adult.

I'm glad you're willling to at least consider treating some
people who may have asthma and be sick all the time.  If a cold
is never just a cold, but a sinus infection or bronchitis, or
pneumonia, then that's a good indicator that more is going on.
Of course in the case of sinus infections, you'd want to rule out
some mechanical problem that may be the cause of infection when
one is congested, but you already know this.  If you consider it
and decide that you'd be willing to treat some people, please
drop me a line and we'll refer people to you.  After further
thought I realized there is Dr. Mirkin who is in your area, but
he won't prescribe Azithromycin, so people end up on antibiotics
for a LONG time.  Because of that, I really don't feel
comfortable referring people to him.

About blood test results - there have been a few (and I think Joy
may be one) who did not have higher titers for either bacteria
who still had their asthma resolved with antibiotics.  One of
them from asthmastory.com holds world records for marathons.  She
got really ill, developed asthma, tested negatively, and Dr.
Wagshul treated her anyway.  She's run all over the world -
Siberia, the desert, etc. She was treated earlier this year.  She
just wrote me about ten days ago to say she raced in Scotland and
had beaten her personal best, and the following weekend beat THAT
personal best.  So her asthma must be resolved, since she
couldn't run while she had it.

So far we've seen many people who are nervous about their
prescription plans - worried that their insurance won't cover the
extended antibiotics - but nobody that I can recall has had their
insurance refuse them.  I know in my case I sent in the script
for 39 - 250mgs Azithromycin tablets and they sent them right out
to me for a whopping $10.00.

We DID, however, have one person whose pharmacist refused to fill
it, saying he couldn't give her that many and she'd have to keep
coming back for them each week.  Why, I don't know.

> > CBI - if you're willing to treat people (or already
> treating
[quoted text clipped - 74 lines]
> --
> CBI, MD
CBI - 28 Jun 2004 14:20 GMT
> <snip> I do want to say something about childhood asthma when one's
> childhood was eons ago.
<snip>

>  I'd had asthma for so long, and because
> the asthma didn't appear to be really related to any illness, and
> because my son had exercise-induced asthma and he felt it could
> be hereditary because of that.  We were both hoping my asthma
> would improve so it would be well managed and the quality of my
> life would improve.
<snip>

> That's my long-winded way of saying in adults who are in their
> 40s or older, it's a tough call to put the pieces together.
[quoted text clipped - 5 lines]
> untreated for a long long time, as I did, and still be treated at
> some point when you're an adult.

I agree.

I know that there have been studies in children showing some measureof
success and did not mean to imply that childhood onset or distant
onset precluded benefiting from antibiotics. However, it does not fit
with the "classic case" that has been described (the adult with sudden
onset of symptoms after a URI). I suspect that once this thing is
hashed out most of the true cases will not fit this classic scenario.
Acknowledging that infection plays a role in some kids, perhaps in
quite a few of them, is a long way from recommending that all kids
with asthma be put on long term antibiotics.

> I'm glad you're willling to at least consider treating some
> people who may have asthma and be sick all the time.  If a cold
> is never just a cold, but a sinus infection or bronchitis, or
> pneumonia, then that's a good indicator that more is going on.

Yes, but the clinical diagnosis of bacterial bronchitis and sinusitis
is notoriously unreliable. Especially, when you consider that asthma
can produce a cough with some sputum, and the propensity of some docs
to throw antibiotics at all respiratory symptoms and secretions. There
are many docs who consider it standard practice to start antibiotics
with all exacerbations of asthma or COPD.

However, I am willing to do it in some cases. In Lissa's case, unless
the story changed when I got the complete version, I would be inclined
to treat - even if the blood tests were negative (for the reasons
stated earlier). In MS's I would probably prefer to see if he remains
stable on a conventional regimen and then place more weight on the
testing if he does not.

> I realized there is Dr. Mirkin who is in your area, but
> he won't prescribe Azithromycin, so people end up on antibiotics
> for a LONG time.  Because of that, I really don't feel
> comfortable referring people to him.

Just out of curiosity - why not? I mean - if he is accepting of the
theory and willing to prescibe prolonged courses of antibiotics why be
so adamant about which one? Is it that he is using a tetracycline
(which has a long track record of long term use in acne and is cheap)?

> About blood test results - there have been a few (and I think Joy
> may be one) who did not have higher titers for either bacteria
> who still had their asthma resolved with antibiotics.  

That does not surprise me at all. As I said - I'm not at all sure that
a suggestive history should take a back seat to a negative test. I
often tell the residents and students to treat the patient and not the
lab.

However, I hope you can understand that it is a bit disconcerting to
treat based on a relatively new theory that has not been tested in
large populations or endorsed by any major body without either the
support of a particularly suggestive history (referring more to MS
than Joy) or laboratory data.

> So far we've seen many people who are nervous about their
> prescription plans - worried that their insurance won't cover the
> extended antibiotics - but nobody that I can recall has had their
> insurance refuse them.  I know in my case I sent in the script
> for 39 - 250mgs Azithromycin tablets and they sent them right out
> to me for a whopping $10.00.

I suspected that was the case. Zithromax is not all that expensive as
branded antibiotics go and it is not normally a chronic med to I
imagine that it stays below the radar of the prescription formulary
guys. Careful of what you wish for - if this thing becomes common it
may get their attention.


> We DID, however, have one person whose pharmacist refused to fill
> it, saying he couldn't give her that many and she'd have to keep
> coming back for them each week.  Why, I don't know.

To collect the co-pay each week. I also wondered aboutt hat
possibility. I have been continually amazed at how the pharmacists can
kind of make up their own rules and do what they want.

Signature

CBI, MD

NorthShoreCEO - 28 Jun 2004 15:07 GMT
> > I realized there is Dr. Mirkin who is in your area, but
> > he won't prescribe Azithromycin, so people end up on antibiotics
[quoted text clipped - 5 lines]
> so adamant about which one? Is it that he is using a tetracycline
> (which has a long track record of long term use in acne and is cheap)?

When you go on vacation, do you fly or do you take a train?
When you moved into your new house, did you set up your closing
for the earliest
possible date, or did you schedule it six months after you could
have closed?  The end result is the same in the two examples of
each scenario, yet the choices matter because people don't want
to wait.  I don't want to wait, you don't want to wait and people
in poor health don't want to wait.  If they can get there in
three months, why make them go through a nine to twelve month
course of antibiotics?   Not to mention that people have to be on
them for a lot longer to even determine whether or not the
antibiotics are working.

I know some people don't do well on Azithromycin, and for them,
Biaxin is a swell alternative.  Biaxin eats my stomach alive, but
others have no problem.  Nine months to a year may not seem like
a long time, but when you're suffering, it's the pits.  It truly
is like telling someone they may have their life given back to
them, but instead of getting it back in three months, they'll
have to wait nine months or more.  You have no idea how this
whole process screws up the head, by the way.  The psychological
ups and downs during the time you're on antibiotics is amazing,
and the paranoia about germs that follows is certifiable.  If you
ever treat anyone for this with antibiotics, be aware that the
emotional and psychological part of the process is going to be a
challenge.

> That does not surprise me at all. As I said - I'm not at all sure that
> a suggestive history should take a back seat to a negative test. I
[quoted text clipped - 6 lines]
> support of a particularly suggestive history (referring more to MS
> than Joy) or laboratory data.

Absolutely, and I don't think every asthmatic needs to be tested
and treated.  But for those who suffer like this, or those whose
asthma began following a bad upper respiratory illness, it should
be treated differently.

As for waiting until testing on large populations has been done -
don't get me started on that note.  Dr. Hahn can't get funding.
National
Jewish Medical and Research Center can, but instead of looking at
other studies and using those as a starting point, or using data
from doctors who have been treating this for years, they're
ignoring all of that and reinventing the wheel by conducting
studies in which they give asthmatics that test positively for
either bacteria a six week course of Clarithromycin/Biaxin -
which is not long enough to do anything.  So far, and not
surprisingly, all of their conclusions state that asthma was
slightly improved for a time in asthmatics.  Well, yeah, given
the fact that they haven't treated for a long enough period to
eradicate the bacteria, that would be the case.  It scares me
that the possibility exists that at some point, such studies will
end with everyone concluding that slight temporary improvement is
all one would hope for anyway.

Rheumatoid arthritis was linked to bacteria as early as 1939.
Additional studies were done in 1955 that validated this.  Here
we are in 2004 and
research is still being done linking RA to bacteria, but few
doctors will treat patients with antibiotics.  I just got a list
of doctors here in Illinois who treat RA with antibiotics and if
I use both hands to count them on this list,  I'll have some
fingers left over.

No offense to you or your profession, but if technology moved as
quickly as modern research and medicine did, none of us would be
online.

> To collect the co-pay each week. I also wondered aboutt hat
> possibility. I have been continually amazed at how the pharmacists can
> kind of make up their own rules and do what they want.

OOOOHHHHHHH!!!!!!   I hadn't thought of that.  Boo them.
CBI - 28 Jun 2004 20:27 GMT
> > > I realized there is Dr. Mirkin who is in your area, but
> > > he won't prescribe Azithromycin, so people end up on
[quoted text clipped - 23 lines]
> them for a lot longer to even determine whether or not the
> antibiotics are working.

I think you misunderstood the question. I fully understand why you
prefer azithromycin. It seems like the best choice to me as well.

I was asking why the doc is so adamant about choosing whatever other
drug it is he prefers. I can understand a tetracycline - for the
reasons listed above - but I would find being so adamant about Biaxin
to be a bit strange.

> I know some people don't do well on Azithromycin, and for them,
> Biaxin is a swell alternative.  Biaxin eats my stomach alive, but
> others have no problem.  

Then there is the drug interactions issue, the higher cost, the less
convenient dosing schedule, the metalic taste......

I can see using it second line and even having some slight preference.
I'm wondering why he would be so adamant though.

> As for waiting until testing on large populations has been done -
> don't get me started on that note.  Dr. Hahn can't get funding.

That is a shame. I don't think everyone should have to wait until the
studies are done but it would be a shame if they never get done,
either due to a lack of patients because people are treated outside
studies or a lack of funding.

> National
> Jewish Medical and Research Center can, but instead of looking at
[quoted text clipped - 4 lines]
> either bacteria a six week course of Clarithromycin/Biaxin -
> which is not long enough to do anything.  

I would have to wonder if it has to do with the source of the funding.

> No offense to you or your profession, but if technology moved as
> quickly as modern research and medicine did, none of us would be
> online.

I think that depends greatly on the specifics of what you are
referring to. I think just about everyone here would be shocked to
learn that "modern" medicine has little data on what a normal
temperature or heart rate is - we still really don't know and the
little data that there is suggests that the numbers we are curently
using are probably wrong. In other areas the advances have been
breathtakingly rapid.

Signature

CBI, MD

NorthShoreCEO - 28 Jun 2004 22:19 GMT
> I think you misunderstood the question. I fully understand why you
> prefer azithromycin. It seems like the best choice to me as well.
[quoted text clipped - 3 lines]
> reasons listed above - but I would find being so adamant about Biaxin
> to be a bit strange.

Oh, sorry - I totally misread the question.  We had a person ask
Dr. Mirkin why he refuses to use Azithromycin, and he did at his
next appointment, and this is what he posted:

"As I promised, I asked Dr. Mirkin when I saw him yesterday about
why he gives Biaxin and not Zithromax. He said, that he also
gives Zithromax but not for long term as Zithromax has not been
approved by the Food and Drug Adminstration as a long term
treatment. the most a doctor can give you of Zithromax at one
time is 6 days according to the FDA."

Now I don't know if he really said this, or if this man
misunderstood, but this also gave me great pause about referring
people to him.  Isn't the correct phrase that it's an unapproved
use of an approved drug?   And obviously doctors can, and do,
prescribe for longer than six days.   It almost makes me feel the
way you feel about the pharmacist who said he couldn't fill the
prescription for more than a week at a time.

> Then there is the drug interactions issue, the higher cost, the less
> convenient dosing schedule, the metalic taste......
[quoted text clipped - 9 lines]
> either due to a lack of patients because people are treated outside
> studies or a lack of funding.

National Jewish has done ongoing studies and I feel it's been a
waste of time to repeat the same thing over again with the same
six week round of Biaxin.  I'm now trying to find a filthy rich
high profile person who either suffers from asthma, or has a
child who is suffering from asthma, who may be willing to take
this on for some private funding.  That's the only way this will
get out there, because without funding to conduct larger studies,
this isn't going to be accepted and as long as National Jewish is
getting the funding, the results of the studies will probably not
change.

> > National
> > Jewish Medical and Research Center can, but instead of looking at
[quoted text clipped - 6 lines]
>
> I would have to wonder if it has to do with the source of the funding.

The manufacturers of Azithromycin have given some money for some
small funding, but when it comes to the NIH, Dr. Hahn just can't
get funding approval.  He's been working with some people at U of
WI on this, I believe, and they were just turned down a few
months ago.  Part of the problem is that he's a
practitioner/researcher.  If you were NIH, would you put your
money into a practitioner/researcher or the number one asthma
facility in the country?  It just makes me mad that they ARE the
number one asthma facility in the country, and they're
approaching this the way they are.  I'd much rather have them
working with some of these doctors who have been treating
patients.  They have a wealth of information that's being
ignored.  I'm sure they think any contribution of theirs would be
simply anecdotal, and therefore, meaningless.

> > No offense to you or your profession, but if technology moved as
> > quickly as modern research and medicine did, none of us would be
[quoted text clipped - 7 lines]
> using are probably wrong. In other areas the advances have been
> breathtakingly rapid.

I really mean more in terms of research and the way the ball gets
dropped for fifteen years at a time, only for them to start from
square one all over again.
CBI - 29 Jun 2004 18:13 GMT
> Oh, sorry - I totally misread the question.  We had a person ask
> Dr. Mirkin why he refuses to use Azithromycin, and he did at his
[quoted text clipped - 6 lines]
> treatment. the most a doctor can give you of Zithromax at one
> time is 6 days according to the FDA."

Well - I assume he means that it is approved for long term use for
other indications since nothing is approved for any period of time for
this (specifically at least- see below). Zithromax is a standard drug
for long term use for treatment and prophylaxis of MAC (in severaly
immunosuppressed pts) even if it does not have the offical FDA
approval. In fact, it is profered to Biaxin by most clinitians due to
the decreased drug interactions (a huge issue with HIV and transplant
pts) and the improved tolerability.

A moredirect response to him would be to ask if he ever uses a drug
for "off label" indications (which is impossible not to do and stil
practice medicine)

Finally- Zithromax is FDA approved for treatment of mild to moderate
pneumonia and other respiratory infections and specifically for the
treatment of chlamydia and mycoplasma species. The PDR/FDA does not
make any recommendations as to duration of therapy for any of these
indications so there is a strong argument that the drug is FDA
approved for this purpose.

> Now I don't know if he really said this, or if this man
> misunderstood, but this also gave me great pause about referring
> people to him.  Isn't the correct phrase that it's an unapproved
> use of an approved drug?  

Yes - the medical lingo would call it an "off label" use. Most people
- and most docs - would be shocked to learn how many of the drugs are
not approved for the indications they happily use them for. Getting
FDA approval is expensive so if the drug is generic, the practice is
already common (so no additional money will be made by getting it
approved), or the condition is unusual there never will be FDA
approval for it.

> And obviously doctors can, and do,
> prescribe for longer than six days.   It almost makes me feel the
> way you feel about the pharmacist who said he couldn't fill the
> prescription for more than a week at a time.

Like I said above- Zithromax is FDA approved for pneumonia,
bronchitis, and chlamydia and mycoplasma infections. There is no
mention of length of therapy in the approval so I really don't see the
issue. He might be confusing the approval to specifically market 5 and
3 day "paks" with the general indication for the infection.

> I'm sure they think any contribution of theirs would be
> simply anecdotal, and therefore, meaningless.

Anecdotal evidence should not be confused with being synonymous with
evidence from a randomized trial. However, it is a good jumping off
point when planning the trials. Actually, you almost need it since it
will dictate your estimates of power/how large and long you need to go
and warn you of many of the issues you are likely to face and need to
account for.

> I really mean more in terms of research and the way the ball gets
> dropped for fifteen years at a time, only for them to start from
> square one all over again.

Like I alluded to - sometimes it gets dropped - sometimes it is
carried with spectacular success. One problem (probably the big
problem) is that there is no consitant unifying authority that sets
any kind of a rational agenda. Even at the CDC and NIH funding is done
in a piecemeal fasion. One would think that if a small study was
funded and showed promisinfg results that the larger study would be a
no-brainer to get funded. Why else fund the small study in the first
place? Similarly - one would think that if someone suggested a small
study that the authority would point out that that work has been done
and that the authors should build on it rather than duplicate it. That
is what any rational being would do.

Signature

CBI, MD

NorthShoreCEO - 28 Jun 2004 14:24 GMT
This is part of the post the marathon runner left on
asthmastory.com in October of 2003.  What she describes in the
way of her illness is very typical.

".... in the past two years I have had pneumonia twice,
bronchitis three times; severe flu w/horrible chest congestion;
allergies that have gone from allergic to three things to 58 of
60
tested; chronic rhinitis/sinusitis with increasingly severe
headaches;
this year I was diagnosed with asthma and have been getting
increasingly severe attacks and have responded only minimally to
medications.

What is worse is that I am a marathon runner, and yes, I hold
three
world records for running marathons on all seven continents....
now, I
cannot even run a 5K without having an attack. "

She was a patient of Dr. Wagshul who put her on an
Azithromycin/Doxycycline combo and as I wrote yeserday, she just
emailed me to tell me she'd run some marathons in Scotland and
beat her personal best one week - and beat that best the
following week.

People put asthmatics in this big bucket, when asthma in one
person does NOT equal asthma in another.  I know this is because
asthma does have different causes.  In some cases you'll find
poorly managed asthma because the asthma is allergy-induced, and
the not so bright person, or their not so bright family members
won't give up pets - or wearing cologne - or eating certain food.
For another group, it's this unresolved bacteria.   Even other
asthmatics are guilty of this, thinking that they lead an active
life, so other asthmatics should do the same, and if they don't
they're just lazy.  Some doctors and family members, sick and
tired of hearing about how sick and tired the asthmatic feels all
the time, often lose their patience and accuse the person of
being a hypochondriac.

The subset may be small, but it's a beaten down group that badly
needs a break.
Joy - 28 Jun 2004 15:09 GMT
Maureen,

Do me a favor. If someone in your group goes to one of the doctors, ask them
to ask if those of us with C or M pneumonia caused asthma are contagious.
Also, one person did post somewhere that when they saw the doctor who
diagnosed them, he stated he could tell by their symptoms which people were
more likely to be helped. I don't recall though which doc that was. Do you
know? Do you know what he meant by that? Thanks!

Joy

> This is part of the post the marathon runner left on
> asthmastory.com in October of 2003.  What she describes in the
[quoted text clipped - 38 lines]
> The subset may be small, but it's a beaten down group that badly
> needs a break.
NorthShoreCEO - 28 Jun 2004 15:14 GMT
Joy, I think that's been asked already, and I believe the answer
was that it's not
contagious unless it's a current, active infection.

It was Dr. Wagshul who told Amie, the marathon runner, that her
symptoms
and history were classic and he started her out right away on
antibiotics, even
before getting the test results back.  I think when they did come
back, they
were negative, but I'd have to search through the old posts on
asthmastory.com
to find out for sure.

> Maureen,
>
[quoted text clipped - 6 lines]
>
> Joy
Joy - 28 Jun 2004 15:38 GMT
> Joy, I think that's been asked already, and I believe the answer
> was that it's not
[quoted text clipped - 9 lines]
> asthmastory.com
> to find out for sure.

Great! Did she post her "classic" symptoms?
NorthShoreCEO - 28 Jun 2004 16:11 GMT
I did in an earlier post today.

> > Joy, I think that's been asked already, and I believe the answer
> > was that it's not
[quoted text clipped - 11 lines]
>
> Great! Did she post her "classic" symptoms?
Joy - 28 Jun 2004 16:55 GMT
> I did in an earlier post today.
>
[quoted text clipped - 17 lines]
> >
> > Great! Did she post her "classic" symptoms?

Are you saying that the people at asthmastory can agree that part of the
defining symptoms are recurring bronchitis, tiredness, headache, sinusitis?
I realize that not everyone has every symptom. But that does match my
history/symptoms. Do you ever have someone who is cured who has none of
these symptoms?
NorthShoreCEO - 28 Jun 2004 17:43 GMT
> Are you saying that the people at asthmastory can agree that part of the
> defining symptoms are recurring bronchitis, tiredness, headache, sinusitis?
> I realize that not everyone has every symptom. But that does match my
> history/symptoms. Do you ever have someone who is cured who has none of
> these symptoms?

I think they would agree that red flags include the following:

~asthma that began following a bad upper respiratory
illness/infection
~asthma that is not well managed, despite them trying out a lot
of meds/combinations of meds (this doesn't necessarily mean full
blown asthma
attacks, by the way - it can be constant shortness of breath or
labored breathing)
~fatigue
~adult onset asthma
~the general feeling of not feeling well, even on good days
~colds that aren't normal colds but always end up with secondary
infections, such as bronchitis, sinusitis, and pneumonia
~more bouts of illness than the average person
~coughing even when not sick - often a wet sounding cough in the
chest
~all other possibilities have been ruled out, meaning you've had
sinus surgery to correct any problems, or have no problems, and
have had
x-rays and other tests to rule out other problems with the lungs

People who don't struggle with the above generally aren't out
there looking for help with their well-managed asthma, so no,
I've never
heard of someone being cured who didn't have those symptoms, only
because I've never heard of them seeking a cure to begin with.
NorthShoreCEO - 28 Jun 2004 17:59 GMT
I'm reposting what Amie wrote of her symptoms in October of 2003:

".... in the past two years I have had pneumonia twice,
bronchitis three times; severe flu w/horrible chest congestion;
allergies that have gone from allergic to three things to 58 of
60 tested; chronic rhinitis/sinusitis with increasingly severe
headaches; this year I was diagnosed with asthma and have been
getting
increasingly severe attacks and have responded only minimally to
medications.

What is worse is that I am a marathon runner, and yes, I hold
three world records for running marathons on all seven
continents....
now, I cannot even run a 5K without having an attack. "

All sinus/lung issues had been ruled out by the time she went to
Dr. Wagshul.  Look at the illnesses she had in a short period of
time.  That's not normal.   It definitely signals something more
is going on - and this is the important point that we keep.....or
I keep forgetting to include.  Not all asthmatics who are going
through these symptoms have their asthma resolve following the
antibiotic round.  Those who suffer like this and don't have
resolved asthma, can have improved asthma, so their asthma is
well-managed and the quality of their life improves.
We forget about the subset of true asthmatics who have also been
exposed to one of the bacteria which worsened their condition.
That's the group I thought I would be in when I went to see Dr.
Hahn.

> > Are you saying that the people at asthmastory can agree that
> part of the
[quoted text clipped - 33 lines]
> heard of someone being cured who didn't have those symptoms, only
> because I've never heard of them seeking a cure to begin with.
Joy - 29 Jun 2004 00:33 GMT
Thanks Maureen,

I guess the kind of people who show up at asthmastory are the ones who are
desperate enough to have researched the problem themselves. So you really
can't tell based on the experiences of that group whether some of the milder
asthmatics could be cured as well. How does Dr Hahn determine that more than
50% will be helped? Once he started treating asthmatics with antibiotics, he
likely attracted the more severe asthmatics to his practice - people who
would go to the effort to drive to see him because regular protocols were
not working. National Jewish also. Or do you know if the research that lead
him to that conclusion was not from his practice, but from a general
population of asthmatics?

It is so hard to know whether to pursue finding a willing doc if you can't
determine your likelihood of success - it takes a considerable effort to
find one! So I was hoping through this discussion to give some of the
readers of the newsgroup a more informed basis on which to make that
decision. Whether it is worth that effort and if they should indeed take
matters into their own hands. Do you get the impression from Dr Mirkin that
ALL adult onset is due to an infection? That the ones who aren't cured have
had the disease too long and remodeling is now the cause?  Jim Quinlan told
me that people with asthma for more than 10 years are not as likely to
benefit from antibiotics.  It would  mean if you are adult onset, you should
be more actively trying to get antibiotics because it may be too late if you
wait for the studies. You see where I am going here.......

Joy

> I'm reposting what Amie wrote of her symptoms in October of 2003:

> >snip
> >
[quoted text clipped - 31 lines]
> only
> > because I've never heard of them seeking a cure to begin with.
NorthShoreCEO - 29 Jun 2004 01:22 GMT
> I guess the kind of people who show up at asthmastory are the ones who are
> desperate enough to have researched the problem themselves. So you really
> can't tell based on the experiences of that group whether some of the milder
> asthmatics could be cured as well.

Sure they can.  My son was a mild asthmatic.  He had exercise
induced asthma that only required medication during sports where
a lot of running was going on - basketball and football.  He
didn't need it during gymnastics, nor did he need it during
baseball.  He always complained that the advair and albuterol
inhalers didn't help much.  He was treated with a six week round
of Azithromycin when our family doctor, seeing how my situation
turned around, was willing to call Dr. Hahn and discuss his
medical record, etc.  He now pla