On 3/6/07 5:32 PM, in article
1173231178.720561.179870@n33g2000cwc.googlegroups.com,

Do you have a hearing loss? The feeling of fullness/pain in the ear without
visable findings that doesn't respond to a tube in the middle ear could be
cochlear hydrops or TMJ.  Perhaps your doctor would want to try a course of
carbonic anhydrase diuretic.

Dear headk:

First I am not a doctor, I am an engineer who has done some work on
biofilms,

I am not really this self centered but I am not a doctor and I am not
looking to get sued so I can not tell you what to do.
But I have been in your position and I want to help.  I can describe
what I have done and telI you what I would do, and
ask you to help me change the paradigm of threatment for this disease
when you get better.

Short term:
In you shoes I would first get some:

over the counter Zantac,
chewable Vitiman C
MSM capsules
St John's Wart capsules.
hold each in the back of my throat for a few minutes as you would a
throat lozenge.
Sniff and spit.
Repeat.
As soon as I could I would get some Zagarese licorice and I would use
it together with potassium caps in the same way.
Hold them in you mouth and let the medicine diffuse into your sinuses
sniff out the goo that lets go and
repeat.

Then I would add some of the things from the following list to saline
nasal spray to help clean out the front.

Sodium Nitrite (a food preservative)  A lot of food preservatives turn
out to be anti biofilm agents.
Potassium Nitrite (cigerette ash contains nitrite salts if you can't
get it anywhere else.
Cigerettes often make me sick so I let a pack smoke itself under the
range hood so that I could collect the ash. )
Lactic Acid such as produced by Dannon's Immunity and ConAgra's
Culturell.
Vitamin C
MSM   MethylSyphonalMethane  (capsules)
Peppermint (has a furon on the molecule) (apply externally, it will
penetrate)
Vinegar
EDTA (capsules)
Yellow mustard
Zagarese licorice
Amoryn (a saint John's wart combo)
Ranitidine (Zantac)

Macrolide antibiotics such as Azrithomycien (Zithromax) and
erythromycin
interfere with the bugs ability to form  biofilm even at dosages which
are not high enough to kill.

Some of my previous posts list others along with references

Then I would see if I could find an ENT shop that does somnoplasty or
radioablation and get them to use it on my sinuses.

I remember in 2002 when I had gone to the U Ok Orto clinic I saw the
head ENT
(who is a NICE guy) he and a couple of students spent like 2 hours
with me.
I was there from 1:30 till 4:30 with people looking up my nose.
and they gave me the liviquin, which made me vomit after an hour
taking it but completely stopped the Post Nasal Drip for a day, then I
gradually
got worse again day by day not only could I not breath through my
nose,
I began to have a stiff neck and run a fever.
It was a month between appointments, so I took my medicine and l took
a look at what I could see the in fibrous mats I would sniff down
with my own scopes playing with phase contrast and wastewater stains,
because the bugs are mostly clear, but they have different indexes of
refraction. I did not use the government's SEMs because that would be
frowned upon. I saw enough that I knew what it would look like if i
did make a freeze fracture specimen it would look very simular to the
biofilms that grow inside pipes.
Live/dead stain showed a lot of live bacteria.
A biofilm is a multispecies colony, so if one species or varient is
killed off another can take it's place. it is tens or hundreds of
times more
resistant to antibotics than free swimming bacteria and most of the
bacteria in the colony grow just fine in the 'film, but refuse to grow
in culture at all.  This is when I learned that out of the millions of
bacterial species, we can only culture 650.
When I went back I told the Doc that I had a complicated biofilm with
fungi (I only identified actinomycetes much later because something
filamentous was growing that did not have cellulose in its cell
wall.)
He just did not buy that there was fungi and all kinds of different
kinds of bacteria there, the 500 dollars worth of cultures had come
back as "normal flora", and the fungi as negative.

He said that I had pseudomonas though, and needed surgery.

That night I was pretty desperate. stiff neck ,chills, dizziness,
fever.  i knew that I had an infection, I also knew that since it was
not showing up in cultures I would be unlikely to recieve any
effective treatment in the emergency room or hospital until it turned
to meningitis.
So I went to the all night Wal-Mart, and bought some rose fungicide,
cotton and florist wire, made a 12 inch wire loop swab and threaded it
trough my sinuses.
About 4 hours later several greenish grayish things, one the size of
my thumb fell down the back of my throat and off my vocal cords and I
spit them out.
I thought that I had sloughed off the surface layer of my sinuses, but
freezing it and fixing a section there were virtually no homocystine
staining cells.
I have pictures.
I could breath again easy again,

But I could not talk for 3 weeks.

I was mostly but not completly clear.
Gradually the film began to grow in again, my breathing became impeded
again by something that was not vulnerable to the levoquin or
fungicide, and I began to make a serious study of how to get rid of
whole thing with me alive and it dead.

I could not get another ENT appointment for another month.
When I did, my polyps had gone missing but Professor Doctor was still
not buying that I needed antifungals.
so in June I finally had cultures done in Michigan, which came back
positive for unknown fungus.
But Michigan would not treat because I was not local and it would be
irresponsible to prescribe antifungals
without monthly monitoring of liver function.  Grrrrr.
Oklahoma continued to say that I needed surgery,
and if I could have found someone offering radioablation I would have
had it done.
But if they could not see, and acknowledge the unculturable bacteria
that were there, there was no way I was going to
Let them slice me. How were they ever going to control infection while
my head was packed with gauze?
Surgery looked like a short route to post op infection to me.

I called public health and they told me that it is actually against
the law to diagnose from biopsies instead of cultures, which means
that one is SOL if what one has does not dine to grow on speed culture
medium.
Meanwhile I hit on a nasal wash of dilute vinegar, mustard, olive oil,
peppermint oil, and xylitol and gin which allowed me to get some
sleep.
In 2004 I identified my little actino buddies and added colloidal
silica, since that is what they use in wastewater treatment to keep
actinos from making the whole plant a sea of foam.

I moved to SC in 2004, had another round of tests, hoping to find an
ENT who would have a better idea than surgery but no such luck.
I was told that they cultures were negative for fungi, but when I went
to the hospital lab a few months later to pick up a copy, cause I was
going to Duke for a consult and found that the results were not
negative. The culture was positive, but had been sent to the CDC to
identify.

The ENT at Duke also was not prepared look at SEM samples of biofilms
or to make any from biopsies of my nose.
I wanted to him to make a biopsy and let me make a freeze fracture
sample for him to examine under the SEM.
He said that he needed a grant to make a proposal to the human studies
comittiee to make freeze fracture samples to from tissue excised from
CS patients using the SEM.
He looked at my CTs and said that I did not need surgery I needed
allergy shots.
Which I got. Did not help.
I wrote to the NIH about grants etc, etc, etc, and made my own
cultures.

My GP here finally looked at everything, my samples, my tests, 4 sets
of lab cultures, took enough blood to make Dracula pop and the work
showed that there is absolutely nothing wrong with my immune system,
got out his formulary computer and prescribed to cover everything.
And I began to be able to breath through the night. Not cured, but in
remission.
It by that time I had had this stuff 5 years and had declined
turbinectomy twice.
Then he left.
And I was left more 'Medicine by Committee", "practice guidelines" are
trailing edge medicine.
(In fact they are so backward I have seriously considered a Grassley
Act Action for 100 Million Dollars against the Medical Schools
directing that 100 Mil to be spent teaching Doctors and about biofilms
real microbiology. The 650 or so bacteria that researchers have been
able to culture
are invaluable in that they have enabled the characterization of
bacterial toxins and virulence factors, but now we have the profile we
can look for the toxin
weather the bacteria can be cultured or not.
So back to figuring out what works.

By using food coloring I found that what I sprayed in my nose was not
coming out down my throat.
My biggest breakthrough was figuring out that the problem was blockage
further back,
and that what I hold in the back of my mouth will
can encourage the goo to detach, or dissolve so it can be sniffed out
and spit out.
It took me a good two weeks of sessions holding different things to
dissolve and detach most
of the goo that was attached to the back wall above the trachea,
and maybe the posterior parts of the turbinates.

MSM, Amoryn, ranitidine (Zantac) licorice and a homemade buttermilk
using Culturell and Dannon's Immunity in the mouth, along with the use
of a Zapper has allowed me to detach the goo and clear up my breathing
paths when they begin to get obstructed again.

This is still a lot.

Anyway check out the guy that was talking about turbinate somnoplasty.
The no post op infections have been reported with this procedure and I
think I know why. High Frequency AC tends to travel on the surface of
a conductor, rather than through the bulk. RF would definately travel
as a "skin effect', so my guess is that they are frying the bugs on
the surrounding mucusal surfaces without destroying the base of the
cilia.

Let me know how you fare.

Elizabeth

I have some questions for you:

1.  What were your VERY FIRST symptoms 2 years ago?  Did the symptoms
start suddenly or come on slowly and gradually?

2.  Think hard:  Did anything change in your life/lifestyle around that
time or just before, that might have something to do with it?  Did you
move to a new locale, remodel your house or place of business, take a
new job, undergo a stressful life event like a death of a loved one or a
divorce, etc.?  Were you prescribed any medications or inoculations
around that time?

3.  Where do you live?

4.  Do you use any controlled substances?  Do you smoke or drink?

A surprising number of the cases we see around this NG turn out to be
environmental or lifestyle in nature.  Mine was.  :-)

So please forgive my questions, I'm not trying to pry into your personal
life for no reason.  It's just that all too often, on this NG it turns
out that the poor fellow either a) smokes, b) just moved to a highly
polluted area, c) starts becoming a frequent flier around the world, or
d) underwent a stressful life event like the death of a loved one or
divorce.  And in such cases, it's not surprising that the human body
says "Enough!" and an illness results.