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Medical Forum / Diseases and Disorders / Sinusitis / May 2005

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Immediate rebound of ethmoid sinus pain and infection after a month of Augmentin XR 2000mg twice per day

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Susan - 30 Apr 2005 17:27 GMT
Early in the week, I finished a month of Augmentin XR for the worst
acute infection I've ever had in my chronically infected (at least 10
years) right ethmoid sinus.

One day after stopping the abx, I had a lot of clear discharge, and a
bit of the soreness returned in the bone right next to my nose and the
inside corner of my eye.

Two days after, there was blood in the mucus and the gunk was steadily
streaming down my throat.  My leg aches and increased fatigue returned.

Three days in, and I could feel congestion building up in my right
ethmoid sinus that neither pulsatile irrigation reached and Astelin
didn't relieve.

Fourth day, I woke with the typical migraine associated with this sinus
condition; pain in my brow, forehead and the top of my head, followed by
two violent bouts of vomiting on an empty stomach, and a day of
trembling weakness and milder headache.

The headache improved when I took Sudafed later at night, with an NSAID.
I also turned the pulsatile irrigator to its highest pressure, used all
the solution on my right side two times in the evening and at night,
after the Sudafed, and things feel better today, though the bone still
feels sore, like a bruise,  when touched.

Do I need more abx, or is is possible to get this under control with
irrigation, addition of steroid spray to my regimen (Zyrtec, Astelin,
Sudafed)?

I lose an entire day spent in bed, in pain and weak each time this
rebounds.  Do I need longer courses of oral abx?  I'd rather irrigate
with them than take them orally; has anyone had success with this, and
what have people used successfully, in addition to Bactroban?

Susan
Allen L. - 30 Apr 2005 17:40 GMT
> x-no-archive: yes
>
[quoted text clipped - 34 lines]
>
> Susan

Sorry to say, but if I were you I would consider surgery as bad as your
condition sounds.

...Allen
Susan - 30 Apr 2005 17:52 GMT
>>x-no-archive: yes
>>
[quoted text clipped - 39 lines]
>
> ...Allen

I think that may be in my future, but I haven't tried longer term orals
nor been irrigating more than once per day very long.  I haven't tried
local delivery of abx via irrigation.

I'm wondering if folks in my situation have managed without surgery?

Susan
CanDo - 30 Apr 2005 20:51 GMT
Susan, what's your opinion on "Upside Down Sinus Flooding" with hydrogen
peroxide and baking soda? It might be able to effect the Ethmoid Sinus.

Upside Down Sinus Flooding documentation:

http://home.bellsouth.net/p/PWP-upsidedown

> x-no-archive: yes
>
[quoted text clipped - 49 lines]
>
> Susan
Susan - 30 Apr 2005 21:48 GMT
I have no opinion about its effectiveness because I haven't tried it.
My opinion about trying it is that it sounds really uncomfortable, so
I'll keep it in mind as a kind of last resort.

Thanks.

Susan

> Susan, what's your opinion on "Upside Down Sinus Flooding" with hydrogen
> peroxide and baking soda? It might be able to effect the Ethmoid Sinus.
[quoted text clipped - 56 lines]
>>
>>Susan
kathywb2001@yahoo.com - 30 Apr 2005 23:36 GMT
Susan,

   I would suggest that you schedule an appointment with an ENT and
request a culture and sensitivities for both bacteria and mold.  Have
you had a recent CT scan?  Even if it should be read as "normal" you
can still have infection.  I think from my own experience and that of
some others on this group that diseased ethmoids are sometimes hard to
evaluate on CT scans. The infection can also be in the bone and very
difficult to treat.  I also get this clear discharge the day before I
have the really bad sinus pain and pressure.  My current ID doctor says
it's from the inflammation.

KathyW
Susan - 30 Apr 2005 23:49 GMT
> Susan,
>
>     I would suggest that you schedule an appointment with an ENT and
> request a culture and sensitivities for both bacteria and mold.

I know this is a good idea, but I'm not dying to go under anesthesia if
I don't have to.

  Have
> you had a recent CT scan?  Even if it should be read as "normal" you
> can still have infection.

Yes, it was negative and yes I know it's wrong because I'm infected and
was infected when I had it.  :-/

  I think from my own experience and that of
> some others on this group that diseased ethmoids are sometimes hard to
> evaluate on CT scans. The infection can also be in the bone and very
[quoted text clipped - 3 lines]
>
> KathyW

I tend to think it may be in the bone because of the bruiselike soreness
that remains in that one spot even when all other signs of infection
have diminished to none, but that's just supposition, of course.

Susan
kathywb2001@yahoo.com - 01 May 2005 02:21 GMT
Susan,

  You do not have to go undergo general anesthesia to have the sinus
culture.  They just numb the nose by having you sniff up some kind of
numbing junk.  You don't even get drowsy.  It is a little painful
still, but not that bad.

Kathy
Susan - 01 May 2005 04:33 GMT
> Susan,
>
[quoted text clipped - 4 lines]
>
> Kathy

Really?  I thought it was endoscopic and required anesthesia.  Also, my
nose is very skinny, and getting the scope up the deviated (infected)
side is near impossible.  :-(

Susan
Don Brady - 01 May 2005 07:16 GMT
>Really?  I thought it was endoscopic and required anesthesia.  Also, my
>nose is very skinny, and getting the scope up the deviated (infected)
>side is near impossible.  :-(

The scope can usually be inserted into sinuses in those who have previously had
sinus surgery, but not into those who have not.....
kathywb2001@yahoo.com - 01 May 2005 08:58 GMT
But can't they just look up there with the scope and do the culture
with a swab?  I've read that is just as effective.  Or I guess on
second thought the openings are  too small if you haven't had surgery?

I've had surgery, so I hadn't thought about  that.  If that's true I
guess that's why I never had culutres done before surgery.  They didn't
do it at the time of surgery either because they had me on antibiotics
before surgery.  In retrospect, I wish I had had the surgery, gotten
the cultures, then started directly on antibiotics..  The antibiotic I
was on didn't work and  I just ended up taking antibitoic after
antibiotic and ended up with a resistant bacterial infection and a
fungal infection on top of that.  I don't want anyone else to
experience that.
Don Brady - 01 May 2005 09:54 GMT
>But can't they just look up there with the scope and do the culture
>with a swab?  I've read that is just as effective.  Or I guess on
>second thought the openings are  too small if you haven't had surgery?

They are indeed too small unless you have surgery.

>I've had surgery, so I hadn't thought about  that.  If that's true I
>guess that's why I never had culutres done before surgery.  They didn't
[quoted text clipped - 5 lines]
>fungal infection on top of that.  I don't want anyone else to
>experience that.
Steven L. - 01 May 2005 23:54 GMT
>>But can't they just look up there with the scope and do the culture
>>with a swab?  I've read that is just as effective.  Or I guess on
>>second thought the openings are  too small if you haven't had surgery?
>
> They are indeed too small unless you have surgery.

Prior to surgery, my septum was so deviated that my ENT couldn't even
get his scope into my nasopharynx.

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Susan - 01 May 2005 16:48 GMT
> But can't they just look up there with the scope and do the culture
> with a swab?  I've read that is just as effective.  Or I guess on
> second thought the openings are  too small if you haven't had surgery?

I think that's the case, for me, anyway.

> I've had surgery, so I hadn't thought about  that.  If that's true I
> guess that's why I never had culutres done before surgery.  They didn't
[quoted text clipped - 5 lines]
> fungal infection on top of that.  I don't want anyone else to
> experience that.

Augmentin works for me, but several other strong abx do not.  It just
rebounds as soon as I'm off it.  I don't know if that means I need a
longer course or that it's intractable.

Susan
Steven L. - 01 May 2005 23:51 GMT
> x-no-archive: yes
>
[quoted text clipped - 16 lines]
> Augmentin works for me, but several other strong abx do not.  It just
> rebounds as soon as I'm off it.  

Have you tried Levaquin or Avelox?  They have among the broadest
coverages of any antibiotics.

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Steven L. - 01 May 2005 23:54 GMT
> But can't they just look up there with the scope and do the culture
> with a swab?  I've read that is just as effective.  

Susan just said that due to her deviated septum, her ENT can't get the
scope up the infected side.

That was my problem too.  Before surgery, my ENT was simply unable to
get the scope into my nasopharynx.  My septum was deviated practically
into a U-turn at one point.

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Susan - 02 May 2005 00:26 GMT
>> But can't they just look up there with the scope and do the culture
>> with a swab?  I've read that is just as effective.  
[quoted text clipped - 5 lines]
> get the scope into my nasopharynx.  My septum was deviated practically
> into a U-turn at one point.

I don't know if it's the deviated septum or just how incredibly narrow
my nose is.  Prolly both.

Susan
Don Brady - 01 May 2005 03:51 GMT
>I know this is a good idea, but I'm not dying to go under anesthesia if
>I don't have to.

Just for perspective, the rate of death under general anesthesia (including
some already very-sick people undergoing surgery is 1 /13,000 or lower.   Some
say 1/30,000 would apply in a major University medical center setting.

Here are some other risks of death

Accidents/unintentional injury      1/3,000
Pregnancy and childbirth             1/10,000
Heart disease                                1/400
Cancer                                                            1/500
Stroke                                                  1/1,600
Pneumonia and flu                        1/400
Homicide                                                1/16,000

(http://www.dryoho.com/published/surgeryrisks2.html)

>Yes, it was negative and yes I know it's wrong because I'm infected and
>was infected when I had it.  :-/

The CT scan is just a series of photos and is subject to interpretation.  Very
experienced eyes will see things that the radiologist might miss.   I would
take the CT scan (the films, not the report) to some prominent rhologists for
opinions.
Don Brady - 01 May 2005 03:52 GMT
>take the CT scan (the films, not the report) to some prominent rhologists for
>opinions.
Should be rhinologists (ie. experts in sinuses and the nose)
Don Brady - 01 May 2005 03:54 GMT
>Just for perspective, the rate of death under general anesthesia (including
>some already very-sick people undergoing surgery is 1 /13,000 or lower.   Some
[quoted text clipped - 11 lines]
>
>(http://www.dryoho.com/published/surgeryrisks2.html)

Oh I left out
Yearly death by traffic accident US citizens      42,00015/292,000,00016 =
1/7,000
Allen L. - 30 Apr 2005 23:45 GMT
> Susan, what's your opinion on "Upside Down Sinus Flooding" with
> hydrogen peroxide and baking soda? It might be able to effect the
[quoted text clipped - 3 lines]
>
> http://home.bellsouth.net/p/PWP-upsidedown

Susan,

You will be in for some extreme burning if you use the hydrogen peroxide &
baking soda...I used some and it was super bad!! I mixed my usual amount of
salt and baking soda in my irrigation water and then added about a 7 to 1
ratio of hydro. Per. to it...it set me on fire! Couple of days later I tried
with 600 ml of water in a water pic tank w/salt & baking soda only 1 little
capful of the hydro.Per. and it even burned slightly...so be prepared and
try it very weak first if you mix it.

...Allen
CanDo - 01 May 2005 00:28 GMT
> > Susan, what's your opinion on "Upside Down Sinus Flooding" with
> > hydrogen peroxide and baking soda? It might be able to effect the
[quoted text clipped - 15 lines]
>
> ...Allen

Allen, what did you mean by "7 to 1"? If that is 7 parts water to 1 part
peroxide, then I know why you suffered so much discomfort.

The strongest that I use is "10 to 1", which is ten parts water to one part
peroxide. When my sinuses were infected and damaged, that stung quite a bit.
Presently, it hardly bothers me, but that is because my sinuses have totally
healed.

In the documentation ( http://home.bellsouth.net/p/PWP-upsidedown ) I state
that those with sensitive sinuses, or women, should consider a "starting"
dilution of 40 parts water to 1 part peroxide.

I am sorry that you had such a bad experience with the flooding. You
certainly didn't need any more discomfort than what you were already
suffering. I hope that you are doing much better.

Regards.
Allen L. - 01 May 2005 13:26 GMT
>> Susan,
>>
[quoted text clipped - 14 lines]
>In news:UqUce.142174$UW6.66530@bignews5.bellsouth.net,
>CanDo <noemail@bellsouth.com> typed:

> Allen, what did you mean by "7 to 1"? If that is 7 parts water to 1
> part peroxide, then I know why you suffered so much discomfort.
[quoted text clipped - 13 lines]
>
> Regards.

7 parts water to 1 peroxide was the first! But it only was about 8 seconds
in each side! Next time the cap full. I don't think my nose would stand a 40
to 1...maybe 200 to 1...that stuff really stings...now gargling with it
doesn't bother me at all...of course inside you nose is a lot more
sinsitive. I still on occasion use 1 and 1/2 cap fulls to 600ml...it makes
the sinuses 'drain' from the irritation.

...Allen
Steven L. - 01 May 2005 23:50 GMT
> x-no-archive: yes
>
[quoted text clipped - 47 lines]
>
> I'm wondering if folks in my situation have managed without surgery?

The first thing I would suggest is a different antibiotic.  Augmentin is
a first-line antibiotic but it often fails to get all the different
kinds of bugs.  I've seen some recent studies that show that in
sinusitis the sinuses can be infected by several strains of bugs
simultaneously.

There are good second choices if Augmentin fails.  Levaquin or Avelox
(in the quinolone family) are what my ENT swears by.  If even the
quinolones fail, then surgery may need to be considered.

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Susan - 02 May 2005 00:25 GMT
> The first thing I would suggest is a different antibiotic.  Augmentin is
> a first-line antibiotic but it often fails to get all the different
> kinds of bugs.

It actually works pretty quickly for me, until I stop it.  The pain was
in my brow bone, frex, from the corner to almost the other corner.
Brought it down to pinhead size in the inside corner within weeks.

  I've seen some recent studies that show that in
> sinusitis the sinuses can be infected by several strains of bugs
> simultaneously.

Just what I need.  I already have chronic infection with borrelia and
ehrlichiosis.

> There are good second choices if Augmentin fails.  Levaquin or Avelox
> (in the quinolone family) are what my ENT swears by.  If even the
> quinolones fail, then surgery may need to be considered.

My problem with quinolones is that a) I have tinnitus due to
neuroborreliosis and quinolones are ototoxic, and if a drug has
neuropsych type side effects, I get them.  :-(    I may have to risk it,
but I'm really eager to avoid them.  Since I get such good results with
Augmentin XR (2000mg twice per day), isn't it possible that I just need
to stay on them longer, while irrigating with abx too?

Susan
Steven L. - 02 May 2005 05:33 GMT
> x-no-archive: yes
>
[quoted text clipped - 5 lines]
> in my brow bone, frex, from the corner to almost the other corner.
> Brought it down to pinhead size in the inside corner within weeks.

"Within weeks" is not what I would call "pretty quickly."  If an
antibiotic is doing its job, there should be dramatic improvement within
5 days.

>   I've seen some recent studies that show that in
>
[quoted text clipped - 11 lines]
> neuroborreliosis and quinolones are ototoxic, and if a drug has
> neuropsych type side effects, I get them.  :-(    

There's one other thing you can try:  The SinuNeb is a nebulizer that
lets you inhale a nebulized mist of antibiotic right into your sinuses.
   Because the antibiotic mist isn't absorbed systemically as with oral
antibiotics, there are much less side effects.

http://www.sinuspharmacy.com/

I once spoke with them by phone and they said they can make up
special-purpose nebulizer mists for most antibiotics.  So you might try
 a nebulized mist of Levaquin and maybe vancomycin (the "last resort"
antibiotic when all else fails).

> I may have to risk it,
> but I'm really eager to avoid them.  Since I get such good results with
> Augmentin XR (2000mg twice per day), isn't it possible that I just need
> to stay on them longer, while irrigating with abx too?

We can hope that's all it is.

The problem is that you've already been on the Augmentin for a month and
then you stopped it, apparently before the entire infection was knocked
out.  So whatever few bugs survived the Augmentin are resistant to it,
and your new flareup is therefore more resistant than before.

The other problem is that if you have an actual blockage in one of your
sinuses, such as a mucocele, the bacteria can multiply in the secretions
that are bottled up in there and no antibiotic will ever fix that.

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Don Brady - 02 May 2005 05:49 GMT
>The other problem is that if you have an actual blockage in one of your
>sinuses, such as a mucocele, the bacteria can multiply in the secretions
>that are bottled up in there and no antibiotic will ever fix that.

And really that starts to look likely after repeated antiobiotics fail to clear
an infection.  I think the the surgeons know this very well.

I think that in quite a few cases there is deep infection that really does not
stand much chance of being cleared by antiobiotics alone.

Such cases may need either

(1) a major reduction of allergic or other inflammation to allow the sinuses to
open up and drain and heal
or
(2) surgery

Actually, they may need both in some cases.
Susan - 02 May 2005 13:11 GMT
>>The other problem is that if you have an actual blockage in one of your
>>sinuses, such as a mucocele, the bacteria can multiply in the secretions
[quoted text clipped - 14 lines]
>
> Actually, they may need both in some cases.

Well, I've resumed aggressive allergic desensitization, and it's already
helped.  I'm irrigating with more force and more often, and taking a
decongestant (which I avoided due to bp issues, but I don't care if I
die once I get a sinus migraine).  I'll ask my allergist for a steroid
spray to add to my use of Astelin.

Sinuses rule my life.

Susan
Susan - 02 May 2005 13:08 GMT
> "Within weeks" is not what I would call "pretty quickly."  If an
> antibiotic is doing its job, there should be dramatic improvement within
> 5 days.

I get a lot of relief from acute symptoms within days (no more blood,
icky drainage), but it takes a full 3 weeks to a month for the sorness
in the bone to go down to one small spot.

> There's one other thing you can try:  The SinuNeb is a nebulizer that
> lets you inhale a nebulized mist of antibiotic right into your sinuses.
[quoted text clipped - 7 lines]
>  a nebulized mist of Levaquin and maybe vancomycin (the "last resort"
> antibiotic when all else fails).

Thank you, I'll share this with my ID doc.

hope that's all it is.

> The problem is that you've already been on the Augmentin for a month and
> then you stopped it, apparently before the entire infection was knocked
> out.  So whatever few bugs survived the Augmentin are resistant to it,
> and your new flareup is therefore more resistant than before.

That's occurred to me.  It sure no longer responds to Ceftin, which used
to knock it out, for example.

> The other problem is that if you have an actual blockage in one of your
> sinuses, such as a mucocele, the bacteria can multiply in the secretions
> that are bottled up in there and no antibiotic will ever fix that.

Would I get so much drainage if that were the case?

Susan
Murray Grossan - 02 May 2005 16:31 GMT
On 5/2/05 5:08 AM, in article 3dmjh1F6ttajeU1@individual.net, "Susan"
<mcfeins@NOgmailNO.com> wrote:

> x-no-archive: yes
>
[quoted text clipped - 37 lines]
>
> Susan
One  method to is to deliver the antibiotic via pulsatile irrigation. This
has the advantage of revoving heavy mucus first that allows contact with the
antibiotic solution.
Susan - 02 May 2005 17:11 GMT
> One  method to is to deliver the antibiotic via pulsatile irrigation. This
> has the advantage of revoving heavy mucus first that allows contact with the
> antibiotic solution.

Thanks, Murray, it's definitely something I'll discuss with my ID doc.

Susan
Steven L. - 02 May 2005 17:46 GMT
> x-no-archive: yes
>
[quoted text clipped - 5 lines]
>
> Thanks, Murray, it's definitely something I'll discuss with my ID doc.

One word of warning about pulsatile irrigation:  Some physicians still
recommend irrigation with gentamicin solution.  But when I was at the
Cleveland Clinic, they told me that they have stopped recommending that.
Because in a few sensitive patients, just enough gentamicin was getting
absorbed into the body (maybe thru the membranes of the nose or by
swallowing it post-nasally) to cause the serious systemic effects that
oral gentamicin is known to cause.

The only antibiotic irrigation the Cleveland Clinic now recommends is
Bactroban irrigation.  And I haven't seen any scientific studies that
prove that this even works.  It actually made my sinuses worse, because
I am apparently allergic to one of the inert ingredients in Bactroban.

I don't know of any other antibiotics to irrigate with.

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Susan - 02 May 2005 17:53 GMT
> One word of warning about pulsatile irrigation:  Some physicians still
> recommend irrigation with gentamicin solution.  But when I was at the
[quoted text clipped - 10 lines]
>
> I don't know of any other antibiotics to irrigate with.

Thanks again for another very informative post.  I know that anything
coming in contact with mucosal tissue rapidly ends up in the
bloodstream.  Lower quantity, perhaps, but there are few methods of drug
administration more efficient at becoming systemic.

Susan
kathywb2001@yahoo.com - 02 May 2005 18:20 GMT
Susan,
   You may end up having to take IV antibiotics.  My sinus pain was
unbearable before I started the IV antibiotics and I wanted to die. I
was on them for 2 months.  If the infection is truly in the bone,
sprays,  nebulized antibitoctics etc.  will not treat that.  You might
ask your doctor about that.  I'm even wondering if surgery to remove
the affected bone may not be necessary
   My problems have not completely cleared up, but at least I don't
want to die now.   I had the severe pain for about 6 months off and on.
I've had sinus problems for years, but never had pain like this.  It
was worse than childbirth.  I haven't had that pain in about a month,
but am still dealing  with a fungal infection and being treated for it.
Has your doctor considered a fungal infection or allergic fungal
sinusitis?  

Kathy
Susan - 02 May 2005 18:25 GMT
> Susan,
>     You may end up having to take IV antibiotics.  My sinus pain was
[quoted text clipped - 3 lines]
> ask your doctor about that.  I'm even wondering if surgery to remove
> the affected bone may not be necessary

I wonder if surgery may be necessary, too.  I managed to avoid lengthy
IV abx for tick borne diseases, and I'm not dying to do it again,
especially since I have lousy veins for a PICC line, and I really don't
want a central line.

>     My problems have not completely cleared up, but at least I don't
> want to die now.   I had the severe pain for about 6 months off and on.
[quoted text clipped - 3 lines]
>  Has your doctor considered a fungal infection or allergic fungal
> sinusitis?  

My doc and I talked about the possibility that it's fungal.  I don't
think he's on board with how serious this is yet, since my former
allergist treated it before my ID doc got to see me.

Susan
kathywb2001@yahoo.com - 02 May 2005 18:40 GMT
You may have mentioned this earlier, but I don't remember.  What do
your CT scans show?  As I mentioned earlier the ones done around my
home town have all come back fairly normal, but I later found out they
were limited.  I was diagnosed with the osteomyelitis from a detailed
scan that I had at National Jewish Medical Center in Denver about a
year and 1/2 ago.  It showed "mild" chronic ethmoid sinusitis with
reactive bone formation.  The reports I first received did not mention
osteomyelitis and no one there mentioned it either.  I only found out
when I requested a CD with a copy of the CT.  The report that I
received with it mentioned the possibility.  That's what I took to the
ID doctor in Atlanta.  I have since found out that reactive bone
formation is most likely indicative of bone infection.

That's why I now get copies of all reports and the actual scans to take
to my doctor.  I even obtained a photograph of one of the cultures.   I
think a lot of doctors underestimate the pain and suffering that a
person with chronic sinustis has.
BTW, have you ever had brown or orangish looking mucus?  They can be
indicative of a fungal infection.
Susan - 02 May 2005 18:49 GMT
> You may have mentioned this earlier, but I don't remember.  What do
> your CT scans show?

That my sinuses are all "fairly well aerated and pneumatized."

 As I mentioned earlier the ones done around my
> home town have all come back fairly normal, but I later found out they
> were limited.  I was diagnosed with the osteomyelitis from a detailed
[quoted text clipped - 6 lines]
> ID doctor in Atlanta.  I have since found out that reactive bone
> formation is most likely indicative of bone infection.

Yes, I've read that.  I had to go to specialty centers to find folks who
could properly read SPECT scans for Lyme disease induced damage, and I
guess it makes sense to send my films somewhere.  Any referrals to those
who might read them for me for a fee?  IF they're good enough to read,
that is.

> That's why I now get copies of all reports and the actual scans to take
> to my doctor.  I even obtained a photograph of one of the cultures.   I
> think a lot of doctors underestimate the pain and suffering that a
> person with chronic sinustis has.

They just want to know if it hurts on your cheekbones.  :-/  I, too, get
copies of everything.

> BTW, have you ever had brown or orangish looking mucus?  They can be
> indicative of a fungal infection.

The only brown I've ever seen was dryish blood, I believe.  No orange.

Susan
kathywb2001@yahoo.com - 03 May 2005 04:07 GMT
I wouldn't have any idea of where to refer you to.  The only CT scan
that showed the chronic ethmoid sinusitis was done at National Jewish
in Denver.  They are considered to be the # 1 respiratory medical
center in the U.S. but they mainly deal with lung problems, but they do
have very sophisticated equipment.  I went there because I was coughing
up the brown mucus.  I really didn't get a lot of help there.  They
just suggested using flonase twice a day.  They insisted that the brown
mucus was from reflux, which I do have, but I've been to 3 GI doctors
who say it wouldn't cause that kind of problems.  Just keep trying to
find someone to take you seriously.

Good luck.
Susan - 03 May 2005 04:12 GMT
> I wouldn't have any idea of where to refer you to.  The only CT scan
> that showed the chronic ethmoid sinusitis was done at National Jewish
[quoted text clipped - 8 lines]
>
> Good luck.

Have you looked into the specific carbohydrate diet or just lower
carbing to control your GERD?  It almost always disappears.

Susan
Steven L. - 03 May 2005 01:22 GMT
> Susan,
>     You may end up having to take IV antibiotics.  My sinus pain was
> unbearable before I started the IV antibiotics and I wanted to die. I
> was on them for 2 months.  

Which antibiotics were you on?

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kathywb2001@yahoo.com - 03 May 2005 04:00 GMT
  I was on IV Timentin for 2 months.  This antibiotic was used because
of the heavy growth of Stenotrophomonas in my sinuses.  I had not
responded to oral Bactrim, which  usually treats this.  It is about the
only other option.  I had also had heavy growth of Serratia marcescens
before that.  If you do a search for either of these on the internet,
it relates them both to chronic sinusitis.  Now I am on IV voriconazole
(Vfend), a new antifungal.  I had blastomyces and Penicillium cultured
out also.  My current ID doctor says we will switch to nasal sprays
after that.
  I think I may have gotten the steno from using so many oral
antibitoics and  then picked it up because I wasn't boiling the water I
use in irrigation.  This bacterium is waterborne and can even be found
in bottled water and antibacterial soaps.  It usually doesn't cause a
problem, but I had also been on low dose prednisone for several months.
Before that I had used several antibitoic sprays including gentamycin
and at one point nebulized tobramycin.   I got worse after that.  I've
read that the use of these last two can cause selection for the
Stenotrophomonas.
  I have no idea how I got the blastomyces, but it is considered a
true infection and you have to inhale it from contaminated soil.  I
also worked in an extremely moldy school for a number of years that had
organic debris growing on a leaking roof.  I think that mold may have
been the problem all along and taking so many antibitoics made it
worse.
   The ID doctor I am now seeing believes pretty much in the Mayo
Clinic theory, but treats chronic sinusitis more aggressively.  He says
you have to get rid of both the bacteria and the mold to get better.
He also says that fungi are difficult to culture out sometimes.  I know
that this treatment is pretty drastic, but I have been so sick I have
wanted to die for over 2 years.  This was my last hope.    I took oral
Diflucan several times with no relief.  I also used nebulized
Amphotericin at one point and did improve, but went back to work in the
moldy environment 2 years ago and haven't been well since.  I haven't
been on the IV Vfend long enough to know if it will work.  At first I
felt terrible, but the last couple of days have felt better.
   I also know that most people won't need to be treated this
drastically, and I wouldn't recommend it but as a last resort, because
there are several risks involved. That's why I keep emphasizing that
people keep pressing to get a correct diagnosis early on.  Of course
doing that sometimes is very difficult as you probably know.
   You didn't ask for all of this information, but I just kept
rambling on.  Sorry, I just needed to vent to others who understand,
even if they don't agree with my approach.
Susan - 03 May 2005 04:07 GMT
>    I was on IV Timentin for 2 months.  This antibiotic was used because
> of the heavy growth of Stenotrophomonas in my sinuses.  I had not
[quoted text clipped - 39 lines]
> rambling on.  Sorry, I just needed to vent to others who understand,
> even if they don't agree with my approach.

WOW, this sounds awful, I'm so sorry.

Have you ever had your immune subclasses evaluated to see if you're
deficient in any way?

Susan
Don Brady - 03 May 2005 05:15 GMT
.....
>    The ID doctor I am now seeing believes pretty much in the Mayo
>Clinic theory, but treats chronic sinusitis more aggressively.  He says
[quoted text clipped - 15 lines]
>rambling on.  Sorry, I just needed to vent to others who understand,
>even if they don't agree with my approach.

If the current approach falls short, or takes too long,  U. Penn. in
Philadelphia has a unique surgical approach that you might  consider.  It
involves removing enough ethmoid bone to get rid of infection that may have
lodged in it......
kathywb2001@yahoo.com - 03 May 2005 10:43 GMT
Susan,

   I have had my immune subclasses checked twice.  All were normal.
Both times the IgG was on the low side of normal very near the cutoff.
Doctors didn't see any need for concern.  My IgG antibodies have been
elevated to many molds and IgA and IgM to some.  I know this just shows
exposure, but am not sure how it affects the total count. I have never
heard about the low carb diet for GERD.  I take Aciphex for it.  I
really believe part of it is from all of the drainage, because as it
decreases, the reflux seems to get better.  I will look into the low
carb thing, but I've tried about every diet there is and food, except
maybe milk products, don't seem to contribute to the problem.

Don,

  I have read about  U. Penn and Dr. Kennedy's approach.  I'm keeping
that in the back of my mind in case this doesn't work.

Thanks,
Kathy
Susan - 03 May 2005 12:52 GMT
> Susan,
>
[quoted text clipped - 3 lines]
> elevated to many molds and IgA and IgM to some.  I know this just shows
> exposure, but am not sure how it affects the total count.

Well, if low end of normal in IgG, that may represent a diminishment of
previous immune function for you.  It may be contributing.

 I have never
> heard about the low carb diet for GERD.  I take Aciphex for it.  I
> really believe part of it is from all of the drainage, because as it
> decreases, the reflux seems to get better.  I will look into the low
> carb thing, but I've tried about every diet there is and food, except
> maybe milk products, don't seem to contribute to the problem.

It's very easy to see if it responds.  Just don't eat starch and sugar
for a couple of days.  In my case, my severe GERD was caused by
infection and successfully treated with abx.  I suspect borrelia, since
I tested neg. for h. pylori.

Susan
Don Brady - 03 May 2005 18:07 GMT
>Don,
>
>   I have read about  U. Penn and Dr. Kennedy's approach.  I'm keeping
>that in the back of my mind in case this doesn't work.

Kathy,

Excellent!

Don
Woody Long - 06 May 2005 23:40 GMT
> I was on IV Timentin for 2 months.  This antibiotic was used because
> of the heavy growth of Stenotrophomonas in my sinuses.  I had not
[quoted text clipped - 3 lines]
> it relates them both to chronic sinusitis.  Now I am on IV voriconazole
> (Vfend), a new antifungal.

Unless, you are too sick to swallow pills, there is no reason to be on
voriconazole IV.  The absorption of the drug is  about 95%, so there
should be no reason why you cannot just take pills.  You can get bad
infection (sepsis) from IV ports that can kill.

 I had blastomyces and Penicillium cultured
> out also.  My current ID doctor says we will switch to nasal sprays
> after that.
[quoted text clipped - 3 lines]
> in bottled water and antibacterial soaps.  It usually doesn't cause a
> problem, but I had also been on low dose prednisone for several months.

The prednisone will tend to make the infection worse

>>    I have no idea how I got the blastomyces, but it is considered a
> true infection and you have to inhale it from contaminated soil.  I
> also worked in an extremely moldy school for a number of years that had
> organic debris growing on a leaking roof.  I think that mold may have
> been the problem all along and taking so many antibitoics made it
> worse.

I think the mold would not have caused a problem without prior exposure
to antibiotics, IMO

>     The ID doctor I am now seeing believes pretty much in the Mayo
> Clinic theory, but treats chronic sinusitis more aggressively.

Yes but the antibiotics he is giving you and the prednisone will
counteract the effects of the Vfend and tend to cause resistance.  You
could be taking Vfend in pills right now, but if you become resistant,
the remaining antifungals you can take are IV only.

That's why I keep emphasizing that
> people keep pressing to get a correct diagnosis early on.

True, but I do not agree that it is necessary to use the antibiotic or
the prednisone.  The underlying reason for the bacterial infection,
according to Mayo, is the immune response to a chronic fungal infection
and it has been proven that antibiotics make this problem worse.  It
has also been shown at U Mich that a fungal infection in the gut causes
sensitization to inhalants including mold.

Regards,

Woody
kathywb2001@yahoo.com - 07 May 2005 03:55 GMT
Woody,

    I appreciate your input.  I had not been on an antibiotic but one
time before I started working in the moldy school and I was almost 30
years old then.  That infection was so bad that I was running a high
fever and was so dizzy I couldn't walk without help.  I don't know if
it was related to the mold then or not, but then I think they probably
just fed on each other.  I'm sure that all of the antibiotics that I
have taken over the next many years have done damage, but I would go as
long as a year without taking them and end up nonfunctinal.   Several
years ago I even did the Candida diet, antifungals (including nystatin,
oral amphotericin capsules that I had to order from France, and
probiotics for about a year with no imporvement.  I took sporanox for a
month as well with no antibiotics.   I did lose some weight though.
   The school I worked in was closed down 3 years ago because of
massive mold infestation.  At that point I had a hypersensitivy
reaction to them and had to take the prednisone.  I had to quit my job.
I'm sure all of this led to the resistant bacterial infections, but
I'm not so sure about the blastomycosis.  As I said before, it is a
true infection and can occur in immnocompetant people as well.
   I had to take the IV timentin to get rid of the Stenotrophomonas,
because I was in such misery I wanted to die.  I had taken 2 months of
liquid sporanox for the blasto because I'm also on nexium and the
capsules can't be absorbed without acid.  My last sinus culture showed
only normal bacteria.  I don't have the fungal culture back, but think
the blasto is probably sitll there.  I've been on the IV Vfend for
about 2 weeks and am seeing some improvement.  I already had the PICC
line so I assume that's why I'm getting it IV.  I am well aware of the
risks of the PICC line, and I am going to ask my doctor about the oral
form at my next appointment, becaue I did read that most of it is
absorbed orally.  I don't know if nexium interfers with the oral
absorption, and the sporanox really upset my digestive system so it may
be a risk I have to take because I can't keep living the way I was
feeling.

I am no longer on any antibitoic nor prednisone and hope I don't have
to be.  But I do believe you have to get rid of both the bacteria and
the mold to get well.

Kathy
Steven L. - 07 May 2005 17:19 GMT
> Woody,
>
[quoted text clipped - 12 lines]
>     The school I worked in was closed down 3 years ago because of
> massive mold infestation.  

Did you ever consider filing a lawsuit?

Signature

Steven D. Litvintchouk
Email:  sdlitvin@earthlinkNOSPAM.net

Remove the NOSPAM before replying to me.

kathywb2001@yahoo.com - 07 May 2005 20:59 GMT
Teachers in my county can't file lawsuits.  It's hidden in our
contracts.  I do have a workman's compensation suit pending though.
Murray Grossan - 03 May 2005 04:03 GMT
On 5/2/05 9:46 AM, in article
yPsde.3945$GQ5.602@newsread1.news.pas.earthlink.net, "Steven L."
<sdlitvin@earthlinkNOSPAM.net> wrote:

> I don't know of any other antibiotics to irrigate with

Actually,  virtually all the antibiotics and antifungals are being delivered
now by pulsatile irrigation.
Tobramycin has been used in this manner since 1992 by U of San Diego. The
nebulizer might help if the sinuses are post surgery wide open  
Steven L. - 03 May 2005 18:18 GMT
> On 5/2/05 9:46 AM, in article
> yPsde.3945$GQ5.602@newsread1.news.pas.earthlink.net, "Steven L."
[quoted text clipped - 5 lines]
> now by pulsatile irrigation.
> Tobramycin has been used in this manner since 1992 by U of San Diego.

Where do you get the irrigation solutions from?  A compounding pharmacy,
or can the patient mix them himself?

Signature

Steven D. Litvintchouk
Email:  sdlitvin@earthlinkNOSPAM.net

Remove the NOSPAM before replying to me.

Murray Grossan - 04 May 2005 05:11 GMT
On 5/3/05 10:18 AM, in article
GnOde.5105$HL2.3038@newsread3.news.pas.earthlink.net, "Steven L."
<sdlitvin@earthlinkNOSPAM.net> wrote:

> Where do you get the irrigation solutions from?  A compounding pharmacy,
> or can the patient mix them himself?
Most doctors have a favorite source. Any compounding pharmacy can make up
the products.
 
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