To whom it may concern: vaylem@cableone.net
My dad is dying, panting and gasping for every breath, all slumped over
most of the time in his chair. He's got emphasyma, COPD and whatever
other labels he's been given, but they don't mach up with his
symptoms and he cannot be the only one to have this problem! Those
lung D/O's start from the top & work their way down, don't they?
He had pneumonia as a small child with no hospitals to tend him. As a
grown, most stubborn man in his late 50's or early 60's he got it
again. It's been postulated he lost the lower half of his left lung
with the childhood bout and quite possibly the bottom of the right lung
walking because of it - pneumonia - all one winter with no doctors
or hospitals utilized. Unless someone's got a clue what's really
wrong, he's done w/ Western medicine except for the constant O2
he'd expire immediately without and the albuterol of which he uses
more than he should. He has his own oximeter to track blood saturation
and feels better with lower numbers, strangely, down to a point. I'm
an alcoholic, 20 years recovering come cinco deMayo of this year, but
I've got him drinking a cup full of 14%'ish fortified table wine
- cheap stuff - TID & it raises the numbers temporarily and,
possibly, gives him a bit of respite, but it can't help much or for
long.
He did the sheep new cell (stem cell) treatment in Mexico with some
sort of doctor of a homeopathic bent. First time, he came up like a
miracle! He was walking miles at a time, eating and sleeping better
than before he got hit with whatever this is. A month later it waned.
He got a "booster treatment" (one primary ingredient was hydrogen
peroxide) and he came up like another miracle again, but it waned
again, too. Even after a full 2nd treatment with eight'ish new cell
shots around the lung area harvested from a baby sheep again, each time
he waned, he waned a bit further. Now he's just riding it for as
long as he lasts, I guess.
This is a near genius man in electronics, written up x2 in national
publications (e.g. popular science) and one whom I've never been able
to give a chore he couldn't tackle & do it well! He's literally
good, expert, even, in most every occupation I can think of short of,
maybe, a brain surgeon. He's from that best generation that
appreciates everything, wastes nothing and has the moral standards our
United States used to be made of! He never wasted a minute when he
could be working on something and be productive. Wireless, remote, but
fully live and "in-person" classrooms around our valley with
microwave dishes pointed at the local jr. college (the College of
Southern Idaho) was his last big project. Kids in another town could
attend school in their home town taught by the professor at the college
in Twin Falls, here, each seeing the other (& hearing) on big screen
tv's. They're begging him to just consult, but he's not even up
to that!
What can this be? It's not any of the common disorders. He wasn't
one to contribute to ill-health activities. He should be able to
breathe or at least be helped, but everyone who doesn't know what
he's got wants to call it something they know about so they can add
another patient to the list, it seems. Some honorable and some
less-than-honorable men & women in the field of medicine have tried to
diagnose and treat him, but they don't know what it is and he simply
cannot be the only one on earth with this particular set of symptoms I
see to be atypical for the run-of-the-mill aforementioned diagnoses.
Please think it through, ask more questions if needed and respond, If
he had a prospect that made sense with what is known, he'd travel,
but he's done with those who can't even admit when they don't
know. It is the absolute truth that the more we learn, the more we
know there is to learn - yes? Some don't see it - even very
intelligent people! What do you say?
Alison Chaiken - 11 Mar 2006 05:17 GMT
> My dad is dying, panting and gasping for every breath, all slumped
> over most of the time in his chair. He's got emphasyma, COPD and
> whatever other labels he's been given, but they don't mach up with
> his symptoms and he cannot be the only one to have this problem!
[ . . . ]
> What can this be? It's not any of the common disorders.
You have my sympathy. My grandfather died of emphysema and it was
a nasty way to go.
Having said that, you haven't given us much information to work with.
Does you dad have allergies? Frequent upper respiratory infections?
Is he worse at night or during certain times of year? Does he have
other non-respiratory medical problems? You seemed to indicate that
he has never smoked but did he work in a job where breathing dust or
fibers could have been a problem? Also, tell us more about what
therapies you have tried besides albuterol and stem cells.

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Alison Chaiken "From:" address above is valid.
(650) 236-2231 [daytime] http://www.wsrcc.com/alison/
Waging a war is simple, but running a country is very difficult.
-- Pham Van Dong, first prime minister of unified Vietnam, 1976
michael - 11 Mar 2006 08:15 GMT
Aloha ... As i read your post I am again upset with the answers provided
by some doctors today as they seem to cause additional complications
...........I was mis-diagnosed with asthma for an mrsa bacteria infection
and treated for 3.5 years with no improvement ..... Now on zyvox with much
improvement .......I have been reading about good results from a low dose of
naltrexone enabling the immune system to rebuild ... I have been on high
dose prednisone for 4 years now which caused
problems with my immune system and infections ..I believe if we can rebuild
the immune system our body will have a better chance to heal......Here is
the link so you can read
http://www.lowdosenaltrexone.org/index.htm
Mahalo Michael
> To whom it may concern: vaylem@cableone.net
>
[quoted text clipped - 61 lines]
> know there is to learn - yes? Some don't see it - even very
> intelligent people! What do you say?
michael - 11 Mar 2006 08:37 GMT
Aloha ...I forgot to post mailto:lowdosenaltrexone@yahoogroups.com ..As
with all newsgroup info try to back it up (info) with medical studies or
doctor reports when you can....sometimes damm near impossible to find much ,
then use good judgment....,mahalo Michael
> To whom it may concern: vaylem@cableone.net
>
[quoted text clipped - 61 lines]
> know there is to learn - yes? Some don't see it - even very
> intelligent people! What do you say?
NorthShoreCEO - 11 Mar 2006 13:12 GMT
I have no idea if this could be your fathers problem, but I know
of a couple of people who were diagnosed with COPD (and many who
had asthma) only to find they had unresolved bacteria.
Chlamydia pneumoniae and mycoplasma are airborne and you can get
them when you've caught a cold, flu, bronchitis or pneumonia. If
his asthma began after his first bout with pneumonia as a child,
it's very possible that the unresolved (undertreated) bacteria
caused it. It could very well have been made worse with this
second bout.
I had pneumonia as a kid, had problems breathing after that, and
was diagnosed with asthma a couple of years later. Was sick
frequently, got another bout of pneumonia in my 20's and didn't
feel well after that and was sick even more often, with
additional bouts of pneumonia. Three years ago I was treated
with Azithromycin (once a week for twelve weeks, following a
three day jump start) and I've been asthma free and asthma med
free ever since.
Chlamydia pneumoniae does work it's way into the body through the
nasal passages or mouth, and works its way down, so interesting
that you wrote it starts from the top and works it's way down.
(it's the opposite of the sexually transmitted chlamydia, which
starts at the bottom and works its way up into your body).
Please look at the research at www.asthmastory.com, including the
pdf file of Dr. Hahn found on the bottom left of the home page.
I'm a moderator there. Dr. Hahn is the doctor who first noticed
a link between asthma and bacteria and he's been studying it for
twenty years. Email me here or post or private message me there,
and I'll give you the contact information for Dr. Hahn. He'll
speak to your fathers doctor to give him more information about
this link and treatment..
It's possible your fathers asthma as a child is unrelated to his
bout with pneumonia, but this second bout could have made his
asthma worse. Bacteria lives in the tissue of your lungs and
sinuses and remains there unless treated with the correct
antibiotic at the right dose for a full twelve weeks. It sounds
like treaatment would be worth a try.
NickName - 13 Mar 2006 18:53 GMT
My mom was wrongly diagnosed for three years with asthma, until finally
a doctor found a subglotic stenosis - a web like tissue growing in her
airway essentially making her airway smaller and smaller. Surgery is
necessary to correct his but should have happened a lot sooner for it
to be successful. Sadly she died two years ago as a result of a body
weakened by a combination of not breathing well, two very intense
surgeries, and the stress of living with a trach for two years.
This doesn't help you or your dad, but hopefully will encourage you to
look at the problem being caused by something other than the obvious.
> To whom it may concern: vaylem@cableone.net
>
[quoted text clipped - 61 lines]
> know there is to learn - yes? Some don't see it - even very
> intelligent people! What do you say?
00doc - 14 Mar 2006 04:43 GMT
> To whom it may concern: vaylem@cableone.net
>
> My dad is dying, panting and gasping for every breath, all slumped over
> most of the time in his chair. He's got emphasyma, COPD and whatever
> other labels he's been given, but they don't mach up with his
> symptoms and he cannot be the only one to have this problem!
You never tell us what the docs say he has, why they think he has it, and
why you disagree.
Asthma is often misdiagnosed but usually it is because the proper evaluation
is not done rather than false or misleading tests. Things like subglotic
stenosis, vocal cord dysfunction, and chronic sinusitis can produce symptoms
that can be confused with asthma but none would mimic asthma on pulmonary
function testing. That is not to say that the test is 100%. Some chronic
infections ("atypical" bacteria rather than typical bacteira like staph) can
cause reversible wheezing that for all the world will appear as asthma (they
can probably be better termed a reversible cause of asthma rather than a
mimic or misdiagnosis). There are many causes of emphysema other than
smoking (but all are much less common).
Lastly, I am sorry to hear about him. End stage respiratory disease is one
of the most unpleasant conditions one can have. If the diagnostic and
therapeutic options have been exhausted (I have no idea of this is so) then
you may want to consider hospice. They can do a lot to control the symptoms
even of they can't stave off the disease.

Signature
00doc
Jason - 15 Mar 2006 00:58 GMT
> > To whom it may concern: vaylem@cableone.net
> >
[quoted text clipped - 22 lines]
> you may want to consider hospice. They can do a lot to control the symptoms
> even of they can't stave off the disease.
Ask your doctor to refer your father to a pulmonary specialist. They now
have special equipment that helps the doctor figure out the type of
disease that is the cause of the problem. I agree that asthma is often
misdiagnosed but that is because most family practice doctors do not have
the proper medical equipment needed to diagnose breathing problems. For
example, a chest X-ray should be done to determine whether or not your
father has lung disease. Pulmonary doctors have special equipment in their
offices that help the doctor to figure out whether or not a patient has or
does not have asthma. I know because I am under the care of a pulmonay
specialist.

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