report from Cleveland Clinic

[Guest guest]

Yesterday's visit went pretty well. Far fewer allergies then ever in the past.

Particularly

interesting was the lack of reaction to dust mites. Still, I am not rushing to

remove the

slipcovers from the mattress or pillows - besides they could prove real helpful

should I

decide to wet the bed!

Dr. is working on scheduling time in the ICU to do the ASA Desen - he is trying

the latest,

1 day - protocol that came out of Scripps. Making me sit in the ICU just in

case I go

anphalactic.

Saw my latest CT scan - as the doc said - it doesn't look pretty but for a

person with

advanced, long-term Samters, was pretty ok. One frontal sinus is mostly

impacted but it

was mostly " fleshy " and was probably due, in a large part, to the fact that I

had been off

Zertec for a week in preparation for the allergy tests that I had that same

morning. There

are plenty of polyps in there, but they seem to be relegated to corners and are

not

blocking the airflow.

Breathing test was, as expected, pretty poor - but was several steps above my

" normal "

baseline. The Zyflo seems to be having a measurable effect in addition to the

psysiological effects that I had sensed or noticed.

Worst news was the bone scan - I was very glad that i brought it up when we were

discussing testing - I don't understand the scale but both hips and femurs came

up with a

1.1 The Doc explained that it means that I " have the hips of a 70 year old

woman. " Not

much that they can do to reverse the damage but a prescription for Boneva should

curtail

the degeneration.

Not sure when I will be going back for the ASA Desen yet - i am hopeful that we

can

schedule it in the next few weeks before the 'Rents go out of town again.

Otherwise, it will

not be until mid September.

One final note - not sure why or how but several times yesterday I smelled -

Fresh paint at

my firends house, perfume when she put in on in the car, and both cigarette and

marajuana smoke at the Steely Dan concert. Not " real " smells - (except the

smoke) - more

like a sensation that there was an odor but not enough to define it. The

cigarette smoke I

could smell - not pleasant - who says asnomia is such a bad thing!

ie

[Guest guest]

ie,

Thanks for the update. It all sounds pretty good except for the bone density. That is a bummer, I guess you won’t buy that new skate board now. ;-)

I did the one day desensitization in a doctors office and waiting room. I’ve never been anaphylactic, so the reaction was not bad. He had me take Zyflo for a week before in preparation. I’m sure yours will go well too, being in ICU. Let us know how it goes.

Pam

On 8/10/06 9:22 AM, " Saidel " <scott_saidel@...> wrote:

Yesterday's visit went pretty well. Far fewer allergies then ever in the past. Particularly

interesting was the lack of reaction to dust mites. Still, I am not rushing to remove the

slipcovers from the mattress or pillows - besides they could prove real helpful should I

decide to wet the bed!

Dr. is working on scheduling time in the ICU to do the ASA Desen - he is trying the latest,

1 day - protocol that came out of Scripps. Making me sit in the ICU just in case I go

anphalactic.

Saw my latest CT scan - as the doc said - it doesn't look pretty but for a person with

advanced, long-term Samters, was pretty ok. One frontal sinus is mostly impacted but it

was mostly " fleshy " and was probably due, in a large part, to the fact that I had been off

Zertec for a week in preparation for the allergy tests that I had that same morning. There

are plenty of polyps in there, but they seem to be relegated to corners and are not

blocking the airflow.

Breathing test was, as expected, pretty poor - but was several steps above my " normal "

baseline. The Zyflo seems to be having a measurable effect in addition to the

psysiological effects that I had sensed or noticed.

Worst news was the bone scan - I was very glad that i brought it up when we were

discussing testing - I don't understand the scale but both hips and femurs came up with a

1.1 The Doc explained that it means that I " have the hips of a 70 year old woman. " Not

much that they can do to reverse the damage but a prescription for Boneva should curtail

the degeneration.

Not sure when I will be going back for the ASA Desen yet - i am hopeful that we can

schedule it in the next few weeks before the 'Rents go out of town again. Otherwise, it will

not be until mid September.

One final note - not sure why or how but several times yesterday I smelled - Fresh paint at

my firends house, perfume when she put in on in the car, and both cigarette and

marajuana smoke at the Steely Dan concert. Not " real " smells - (except the smoke) - more

like a sensation that there was an odor but not enough to define it. The cigarette smoke I

could smell - not pleasant - who says asnomia is such a bad thing!

ie

[Guest guest]

My desensitization took 4 days in the doctor's office. The doctor said it usually takes 2-3 days.... I was about to go out of my mind... sitting in the office for 4 days. MichelePamela <pam@...> wrote: ie,Thanks for the update. It all sounds pretty good except for the bone density. That is a bummer, I guess you won’t buy that new skate board now. ;-) I did the one day desensitization in a doctors office and

waiting room. I’ve never been anaphylactic, so the reaction was not bad. He had me take Zyflo for a week before in preparation. I’m sure yours will go well too, being in ICU. Let us know how it goes.PamOn 8/10/06 9:22 AM, " Saidel" <scott_saideladelphia (DOT) net> wrote: Yesterday's visit went pretty well. Far fewer allergies then ever in the past. Particularly interesting was the lack of reaction to dust mites. Still, I am not rushing to remove the slipcovers from the mattress or pillows - besides they could prove real helpful should I decide to wet the bed!Dr. is working on scheduling time in the ICU to do the ASA Desen - he is trying the latest, 1 day - protocol that came out of Scripps. Making me sit in the ICU just in case I go anphalactic.Saw my latest CT scan - as the doc said - it doesn't look

pretty but for a person with advanced, long-term Samters, was pretty ok. One frontal sinus is mostly impacted but it was mostly "fleshy" and was probably due, in a large part, to the fact that I had been off Zertec for a week in preparation for the allergy tests that I had that same morning. There are plenty of polyps in there, but they seem to be relegated to corners and are not blocking the airflow.Breathing test was, as expected, pretty poor - but was several steps above my "normal" baseline. The Zyflo seems to be having a measurable effect in addition to the psysiological effects that I had sensed or noticed.Worst news was the bone scan - I was very glad that i brought it up when we were discussing testing - I don't understand the scale but both hips and femurs came up with a 1.1 The Doc explained that it means that I "have the hips of a 70 year old woman." Not much that they can do

to reverse the damage but a prescription for Boneva should curtail the degeneration.Not sure when I will be going back for the ASA Desen yet - i am hopeful that we can schedule it in the next few weeks before the 'Rents go out of town again. Otherwise, it will not be until mid September.One final note - not sure why or how but several times yesterday I smelled - Fresh paint at my firends house, perfume when she put in on in the car, and both cigarette and marajuana smoke at the Steely Dan concert. Not "real" smells - (except the smoke) - more like a sensation that there was an odor but not enough to define it. The cigarette smoke I could smell - not pleasant - who says asnomia is such a bad thing!ie

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

In the past few weeks I've been in and out of the Clinic several times.

There is pretty much always someone sitting there getting desensitized to

something. I did the Celebrex challenge in the office.

The doc is putting me into the ICU for the day because my reaction to ASA is

so severe. I had one episode by accident - that was when I discovered the

allergy and another when I was a freshman in College and took the

alka-seltzer that put into the " welcome kit " (they weren't labeled for

individual resale and I was not aware that Alka-Seltzer was aspirin.

Learned an important lesson about reading labels.

Both times I ended up in the ER on my way to ICU. I go anaphylactic

rapidly, and have been warned that it could be fatal if I could not get

assistance quickly.

ie

[Guest guest]

ie: I disagree with your doctor about the use of Boniva for you. You don;t say how old you are but if your bones are that bad then you may need an actual IV med for your bone density. Boniva has not been out that long and the studies on it are not all that good. I would not trust my bone density to Boniva.( And I don't) I think if things are not too terribly bad then Actonel or Fosamax are the way to go ( not just the convenient one- Boniva) If things are terriby severe then Calcium 1500 mg per day plus 800 vit per day and the IV drug for osteoporosis.I assume that you are having a rheumatologist treat your bones. Carol

report from Cleveland Clinic

Yesterday's visit went pretty well. Far fewer allergies then ever in the past. Particularly interesting was the lack of reaction to dust mites. Still, I am not rushing to remove the slipcovers from the mattress or pillows - besides they could prove real helpful should I decide to wet the bed!Dr. is working on scheduling time in the ICU to do the ASA Desen - he is trying the latest, 1 day - protocol that came out of Scripps. Making me sit in the ICU just in case I go anphalactic.Saw my latest CT scan - as the doc said - it doesn't look pretty but for a person with advanced, long-term Samters, was pretty ok. One frontal sinus is mostly impacted but it was mostly "fleshy" and was probably due, in a large part, to the fact that I had been off Zertec for a week in preparation for the allergy tests that I had that same morning. There are plenty of polyps in there, but they seem to be relegated to corners and are not blocking the airflow.Breathing test was, as expected, pretty poor - but was several steps above my "normal" baseline. The Zyflo seems to be having a measurable effect in addition to the psysiological effects that I had sensed or noticed.Worst news was the bone scan - I was very glad that i brought it up when we were discussing testing - I don't understand the scale but both hips and femurs came up with a 1.1 The Doc explained that it means that I "have the hips of a 70 year old woman." Not much that they can do to reverse the damage but a prescription for Boneva should curtail the degeneration.Not sure when I will be going back for the ASA Desen yet - i am hopeful that we can schedule it in the next few weeks before the 'Rents go out of town again. Otherwise, it will not be until mid September.One final note - not sure why or how but several times yesterday I smelled - Fresh paint at my firends house, perfume when she put in on in the car, and both cigarette and marajuana smoke at the Steely Dan concert. Not "real" smells - (except the smoke) - more like a sensation that there was an odor but not enough to define it. The cigarette smoke I could smell - not pleasant - who says asnomia is such a bad thing!ie

[Guest guest]

Sorry to hear you’ve had such a reaction

ie and hope things improve for you.

I’m surprised about the Celebrex because it’s been removed from sale in this

state due to the increased risk of cardiovascular disease in people taking high

doses of it.

From:

samters [mailto:samters ] On Behalf Of Saidel

Sent: Friday, 11 August 2006 7:34

AM

samters

Subject: Re: report from

Cleveland Clinic

In the past few weeks I've been in and out of the

Clinic several times.

There is pretty much always someone sitting there getting desensitized to

something. I did the Celebrex challenge in the office.

The doc is putting me into the ICU for the day because my reaction to ASA is

so severe. I had one episode by accident - that was when I discovered the

allergy and another when I was a freshman in College and took the

alka-seltzer that put into the " welcome kit " (they weren't labeled

for

individual resale and I was not aware that Alka-Seltzer was aspirin.

Learned an important lesson about reading labels.

Both times I ended up in the ER on my way to ICU. I go anaphylactic

rapidly, and have been warned that it could be fatal if I could not get

assistance quickly.

ie

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