Anyone know what this test is?

During my last hospital stay, the doctors drew a boat load of bloodwork,
some of which were specialized tests that had to be sent out to mayo
clinic labs. One of the tests was a TPMT (thiopurine
methyltransferase)? Any of you familiar with this test or had it done
before?

The doctors are thinking I may have something called CVIDS (common
variable immunodeficiency syndrome?)

So far, the tests that have come back abnormal are high sed rate and
high crp which are always high for me,
CH50 162 (ref=52-128),
IGG 460 (ref=620-1520),
IGM 32 (ref=60-370),
and then the TPMT came back at 15.3 (ref=15.1-26.4 .... 15.1-26.4 =
normal, 6.3-15.0 = heterozygous for low TPMT, <6.3 = homozygous for
low TPMT) ) and had a side note that says: In this sample, the TPMT is
at the very low end of normal range. This activity does not allow
reliable designation of this patient as either a carrier or non-carrier
for the TPMT mutation. We suggest careful monitoring this patients CBC.

They thankfully were able to rule out lupus, which they were really
thinking I had, thank goodness!!!

Echo-cardiogram also showed some plueral effusion which hopefully will
explain why, as of late, I have been retaining sooooo much fluid!

Uggggh, never a dull moment in auto=immune land, huh?!!!
..
..
..
..


Donna
..
..
..
..
1. ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......

2. J.K.M.A.

I am not familiar with it, but there is some info here:
http://www.labtestsonline.org.uk/und...tpmt/test.html
Rose @}>->--
Being educated means that rather than fearing the unknown, one seeks to understand it. RB

Please remove "Ima" to reply.

I haven't heard of that Donna - isn't it nice to know you might be special -
again - NOT!

I have had a different week as well. For the last 6 weeks I have had
increasing muscle weakness and incredible fatique. Struggle to get up in
the morning, afternoon, evening, 11:00 etc. Long naps and basically going
for breakfast and then nap, snack for lunch at home, nap and then dinner and
struggle to stay awake long enough to go to bed when the diarhea and nausea
would keep me awake until 1:00. Just felt crappy.

So whined to my doctor and told him to fix me this week. He tooks vials of
blood and they decided my potassium level is really really low. The HCL and
the steroids together deplete potassium but the spiroton increases
potassium. Both have reduced my feet to 1/2 their size so I can wear shoes
but I guess the spiroton didn't increase the potassium enough to counteract
the other two. ( the instructions for the spiroton said take no high
potassium foods such as potatoes, bananas, avocados).

So off the HCL and on high potassium foods.

At least it wasn't the diabetes or the thyroid or the PML which was the
really scary thought.

So what are they doing about the plueral effusion??

Thank goodness about the lupus - you didn't need that.

So when is the next rituxan or are they going to wait a bit now??

Never a dull moment. I am still going on my quilting trip next week.
Figure I will be a bit better by then! (and if not will still drag myself -
need it badly!)

Parksville was great - the kids kept me going, lots of naps, used my scooter
lots and actually got down to the beach 3 times and sat in a lawn chair and
supervised. It is the most incredible beach. Miles and miles of sand. Did
some walking in the sand with my cane - was pretty tough but felt good to
do. But collapsed in fatique after and about every 3 days during. Some
mornings was just not sure if I could get through the day but always did.
Now I know the reason for the incredible weakness and fatique.

Crap I hate this darn disease - want to go on strike. I want dullness. I
don't want to be special. Choose your sign and we will all march (or crawl
or simply have a sit-in).

Kelly
"Donna G." <DKGBeeker@webtv.net> wrote in message
news:6512-46E34737-267@storefull-3112.bay.webtv.net...
>
>
>
> During my last hospital stay, the doctors drew a boat load of bloodwork,
> some of which were specialized tests that had to be sent out to mayo
> clinic labs. One of the tests was a TPMT (thiopurine
> methyltransferase)? Any of you familiar with this test or had it done
> before?
>
> The doctors are thinking I may have something called CVIDS (common
> variable immunodeficiency syndrome?)
>
> So far, the tests that have come back abnormal are high sed rate and
> high crp which are always high for me,
> CH50 162 (ref=52-128),
> IGG 460 (ref=620-1520),
> IGM 32 (ref=60-370),
> and then the TPMT came back at 15.3 (ref=15.1-26.4 .... 15.1-26.4 =
> normal, 6.3-15.0 = heterozygous for low TPMT, <6.3 = homozygous for
> low TPMT) ) and had a side note that says: In this sample, the TPMT is
> at the very low end of normal range. This activity does not allow
> reliable designation of this patient as either a carrier or non-carrier
> for the TPMT mutation. We suggest careful monitoring this patients CBC.
>
> They thankfully were able to rule out lupus, which they were really
> thinking I had, thank goodness!!!
>
> Echo-cardiogram also showed some plueral effusion which hopefully will
> explain why, as of late, I have been retaining sooooo much fluid!
>
> Uggggh, never a dull moment in auto=immune land, huh?!!!
> .
> .
> .
> .
>
>
> Donna
> .
> .
> .
> .
> 1. ANGELS EXIST, but some times, since they don't all have wings, we
> call them FRIENDS......
>
> 2. J.K.M.A.
>

((((((((((((((((((((((donnag)))))))))))))))))))) i don't know anything,
except that i care about you and am as glad as you are that lupus was ruled
out, sweetie.

kate



"Donna G." <DKGBeeker@webtv.net> wrote in message
news:6512-46E34737-267@storefull-3112.bay.webtv.net...



During my last hospital stay, the doctors drew a boat load of bloodwork,
some of which were specialized tests that had to be sent out to mayo
clinic labs. One of the tests was a TPMT (thiopurine
methyltransferase)? Any of you familiar with this test or had it done
before?

The doctors are thinking I may have something called CVIDS (common
variable immunodeficiency syndrome?)

So far, the tests that have come back abnormal are high sed rate and
high crp which are always high for me,
CH50 162 (ref=52-128),
IGG 460 (ref=620-1520),
IGM 32 (ref=60-370),
and then the TPMT came back at 15.3 (ref=15.1-26.4 .... 15.1-26.4 =
normal, 6.3-15.0 = heterozygous for low TPMT, <6.3 = homozygous for
low TPMT) ) and had a side note that says: In this sample, the TPMT is
at the very low end of normal range. This activity does not allow
reliable designation of this patient as either a carrier or non-carrier
for the TPMT mutation. We suggest careful monitoring this patients CBC.

They thankfully were able to rule out lupus, which they were really
thinking I had, thank goodness!!!

Echo-cardiogram also showed some plueral effusion which hopefully will
explain why, as of late, I have been retaining sooooo much fluid!

Uggggh, never a dull moment in auto=immune land, huh?!!!
..
..
..
..


Donna
..
..
..
..
1. ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......

2. J.K.M.A.

Whoops, that should have read: echo-cardiogram showed a pericardial
effusion NOT a pleural effusion! My bad, sorry about that!
..
..
..
..


Donna
..
..
..
..
1. ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......

2. J.K.M.A.

Donna don't know what that is but sure hope it turns out well for you and
they can fix it so that you get better.


--
Love and Hugs to all
Jo the squirrely one
>
> During my last hospital stay, the doctors drew a boat load of bloodwork,
> some of which were specialized tests that had to be sent out to mayo
> clinic labs. One of the tests was a TPMT (thiopurine
> methyltransferase)? Any of you familiar with this test or had it done
> before?
>
> The doctors are thinking I may have something called CVIDS (common
> variable immunodeficiency syndrome?)
>
> So far, the tests that have come back abnormal are high sed rate and
> high crp which are always high for me,
> CH50 162 (ref=52-128),
> IGG 460 (ref=620-1520),
> IGM 32 (ref=60-370),
> and then the TPMT came back at 15.3 (ref=15.1-26.4 .... 15.1-26.4 =
> normal, 6.3-15.0 = heterozygous for low TPMT, <6.3 = homozygous for
> low TPMT) ) and had a side note that says: In this sample, the TPMT is
> at the very low end of normal range. This activity does not allow
> reliable designation of this patient as either a carrier or non-carrier
> for the TPMT mutation. We suggest careful monitoring this patients CBC.
>
> They thankfully were able to rule out lupus, which they were really
> thinking I had, thank goodness!!!
>
> Echo-cardiogram also showed some plueral effusion which hopefully will
> explain why, as of late, I have been retaining sooooo much fluid!
>
> Uggggh, never a dull moment in auto=immune land, huh?!!!
> .

>
>
> Donna

Here's the information from the Cincinati Children's Hospital:

http://www.cincinnatichildrens.org/N...parentinfo.pdf

I did try to copy & paste and was unable. Basically it is a test for
a certain gene which shows the side effects of certain drugs.

I remember this one came up for me recently and wondered.

Good luck!

Vickie B.

"Kelly" <kelly.e1@shaw.ca> wrote in message
news:Y8KEi.140328$fJ5.128074@pd7urf1no...
>I haven't heard of that Donna - isn't it nice to know you might be
>special - again - NOT!
>
> I have had a different week as well. For the last 6 weeks I have had
> increasing muscle weakness and incredible fatique. Struggle to get up in
> the morning, afternoon, evening, 11:00 etc. Long naps and basically going
> for breakfast and then nap, snack for lunch at home, nap and then dinner
> and struggle to stay awake long enough to go to bed when the diarhea and
> nausea would keep me awake until 1:00. Just felt crappy.
>
> So whined to my doctor and told him to fix me this week. He tooks vials
> of blood and they decided my potassium level is really really low. The
> HCL and the steroids together deplete potassium but the spiroton increases
> potassium. Both have reduced my feet to 1/2 their size so I can wear
> shoes but I guess the spiroton didn't increase the potassium enough to
> counteract the other two. ( the instructions for the spiroton said take
> no high potassium foods such as potatoes, bananas, avocados).
>
> So off the HCL and on high potassium foods.
>
> At least it wasn't the diabetes or the thyroid or the PML which was the
> really scary thought.
>
> So what are they doing about the plueral effusion??
>
> Thank goodness about the lupus - you didn't need that.
>
> So when is the next rituxan or are they going to wait a bit now??
>
> Never a dull moment. I am still going on my quilting trip next week.
> Figure I will be a bit better by then! (and if not will still drag
> myself - need it badly!)
>
> Parksville was great - the kids kept me going, lots of naps, used my
> scooter lots and actually got down to the beach 3 times and sat in a lawn
> chair and supervised. It is the most incredible beach. Miles and miles
> of sand. Did some walking in the sand with my cane - was pretty tough but
> felt good to do. But collapsed in fatique after and about every 3 days
> during. Some mornings was just not sure if I could get through the day
> but always did. Now I know the reason for the incredible weakness and
> fatique.
>
> Crap I hate this darn disease - want to go on strike. I want dullness. I
> don't want to be special. Choose your sign and we will all march (or
> crawl or simply have a sit-in).
>
> Kelly

Bless your heart and everything else come to think of it. I have felt that
way and ya know what? I probably will again. The good days are a
blessing. I sometimes think,,,,, just put this foot in front of that foot
and keep moving.
Harv

"Donna G." <DKGBeeker@webtv.net> wrote in message
news:9896-46E3903B-407@storefull-3118.bay.webtv.net...

> Whoops, that should have read: echo-cardiogram showed a pericardial
> effusion NOT a pleural effusion! My bad, sorry about that!

> Donna
> .

Just know that there are plenty of people that did not even see the mistake.
We are just happy to be reading what you have to say on the board.
Harv

Kelly,

it sounds like you have this virus/flu that is going around. It carries the
muscle weakness, flaring, fatigue with it. Do you also have allergy
symptoms? IF so it is the virus. It also has the nausea and diarhea with it
too.
By the way I have it and it last a long time. I heard it can last up to 6
months.

It is good that it wasn't diabetes or thyroid or PML.

I am also glad about it not being Lupus Donna, I forgot to say that when I
answered your post.

Sounds like you did have alot of fun at Parksville.

I hear that with the darn disease strike. I will join you.

The dr i have to see since mine split, is a jerk with a capital J and there
is no way I can go back to see him or change all my meds like he wants me
too. Hey if it is working, why mess with it.

I chose the sign of We have chronic issues and pain, help us. ;-)


--
Love and Hugs to all
Jo the squirrely one

> I have had a different week as well. For the last 6 weeks I have had
> increasing muscle weakness and incredible fatique. Struggle to get up in
> the morning, afternoon, evening, 11:00 etc. Long naps and basically going
> for breakfast and then nap, snack for lunch at home, nap and then dinner
> and struggle to stay awake long enough to go to bed when the diarhea and
> nausea would keep me awake until 1:00. Just felt crappy.
>
> So whined to my doctor and told him to fix me this week. He tooks vials
> of blood and they decided my potassium level is really really low. The
> HCL and the steroids together deplete potassium but the spiroton increases
> potassium. Both have reduced my feet to 1/2 their size so I can wear
> shoes but I guess the spiroton didn't increase the potassium enough to
> counteract the other two. ( the instructions for the spiroton said take
> no high potassium foods such as potatoes, bananas, avocados).
>
> So off the HCL and on high potassium foods.
>
> At least it wasn't the diabetes or the thyroid or the PML which was the
> really scary thought.
>
> So what are they doing about the plueral effusion??
>
> Thank goodness about the lupus - you didn't need that.
>
> So when is the next rituxan or are they going to wait a bit now??
>
> Never a dull moment. I am still going on my quilting trip next week.
> Figure I will be a bit better by then! (and if not will still drag
> myself - need it badly!)
>
> Parksville was great - the kids kept me going, lots of naps, used my
> scooter lots and actually got down to the beach 3 times and sat in a lawn
> chair and supervised. It is the most incredible beach. Miles and miles
> of sand. Did some walking in the sand with my cane - was pretty tough but
> felt good to do. But collapsed in fatique after and about every 3 days
> during. Some mornings was just not sure if I could get through the day
> but always did. Now I know the reason for the incredible weakness and
> fatique.
>
> Crap I hate this darn disease - want to go on strike. I want dullness. I
> don't want to be special. Choose your sign and we will all march (or
> crawl or simply have a sit-in).
>
> Kelly

Nope no virus - it is low potassium levels which is quite serious and is
being treated promptly now thank goodness. I already feel a tiny bit
better.

What does he want to change in your med regime Jo and for why??

Hugs,
Kelly
"Squirrely" <sqjo@sonic.net> wrote in message
news:46e4881e$0$14115$742ec2ed@news.sonic.net...
> Kelly,
>
> it sounds like you have this virus/flu that is going around. It carries
> the muscle weakness, flaring, fatigue with it. Do you also have allergy
> symptoms? IF so it is the virus. It also has the nausea and diarhea with
> it too.
> By the way I have it and it last a long time. I heard it can last up to 6
> months.
>
> It is good that it wasn't diabetes or thyroid or PML.
>
> I am also glad about it not being Lupus Donna, I forgot to say that when I
> answered your post.
>
> Sounds like you did have alot of fun at Parksville.
>
> I hear that with the darn disease strike. I will join you.
>
> The dr i have to see since mine split, is a jerk with a capital J and
> there is no way I can go back to see him or change all my meds like he
> wants me too. Hey if it is working, why mess with it.
>
> I chose the sign of We have chronic issues and pain, help us. ;-)
>
>
> --
> Love and Hugs to all
> Jo the squirrely one
>
>> I have had a different week as well. For the last 6 weeks I have had
>> increasing muscle weakness and incredible fatique. Struggle to get up in
>> the morning, afternoon, evening, 11:00 etc. Long naps and basically
>> going for breakfast and then nap, snack for lunch at home, nap and then
>> dinner and struggle to stay awake long enough to go to bed when the
>> diarhea and nausea would keep me awake until 1:00. Just felt crappy.
>>
>> So whined to my doctor and told him to fix me this week. He tooks vials
>> of blood and they decided my potassium level is really really low. The
>> HCL and the steroids together deplete potassium but the spiroton
>> increases potassium. Both have reduced my feet to 1/2 their size so I
>> can wear shoes but I guess the spiroton didn't increase the potassium
>> enough to counteract the other two. ( the instructions for the spiroton
>> said take no high potassium foods such as potatoes, bananas, avocados).
>>
>> So off the HCL and on high potassium foods.
>>
>> At least it wasn't the diabetes or the thyroid or the PML which was the
>> really scary thought.
>>
>> So what are they doing about the plueral effusion??
>>
>> Thank goodness about the lupus - you didn't need that.
>>
>> So when is the next rituxan or are they going to wait a bit now??
>>
>> Never a dull moment. I am still going on my quilting trip next week.
>> Figure I will be a bit better by then! (and if not will still drag
>> myself - need it badly!)
>>
>> Parksville was great - the kids kept me going, lots of naps, used my
>> scooter lots and actually got down to the beach 3 times and sat in a lawn
>> chair and supervised. It is the most incredible beach. Miles and miles
>> of sand. Did some walking in the sand with my cane - was pretty tough
>> but felt good to do. But collapsed in fatique after and about every 3
>> days during. Some mornings was just not sure if I could get through the
>> day but always did. Now I know the reason for the incredible weakness and
>> fatique.
>>
>> Crap I hate this darn disease - want to go on strike. I want dullness.
>> I don't want to be special. Choose your sign and we will all march (or
>> crawl or simply have a sit-in).
>>
>> Kelly
>
>

ok glad it is getting better already Kelly.

He wants me off the albuterol. He wants me on advair and I don't want to go
there, I have heard too many that are on that one have had surgery to drain
the fluids off their chest and many many hospital stays because of repeated
respiratory infecitons. It even says that on the commercials about the
respiratory infections. What the heck ever happened to the other meds they
used to give you for asthma.

He wants to take me off the atenolol and put me on a bp med that has a
diuretic in it. With my dehydration issues I can't take a diuretic.

He says the diflucin will kill me so he wants me on nystatin. before I could
tell him why I am not on nystatin, he went on to something else. I am
allergic to nystatin.

He is really arrogant, and loud and thinks he is Dr. God. He wants me off
all the meds the other dr gave me that seemed to work till just this last
week. My bp is going back up again, but then I have been in massive pain. I
did have the bp down to the 120's over 60-70's.

I told him I can't afford all these med changes and prices of the new meds
he wants me on.

I have some meds coming thru drug companys that I can get them for cheaper
or free and he wants to switch all these now.


--
Love and Hugs to all
Jo the squirrely one

> Nope no virus - it is low potassium levels which is quite serious and is
> being treated promptly now thank goodness. I already feel a tiny bit
> better.
>
> What does he want to change in your med regime Jo and for why??
>
> Hugs,
> Kelly

A doctor who doesn't listen to his patient is scary. I can't
remember why the switch, but this does not sound like a good
situation.

Joan

On Tue, 11 Sep 2007 00:26:46 -0700, "Squirrely" <sqjo@sonic.net>
wrote:

>ok glad it is getting better already Kelly.
>
>He wants me off the albuterol. He wants me on advair and I don't want to go
>there, I have heard too many that are on that one have had surgery to drain
>the fluids off their chest and many many hospital stays because of repeated
>respiratory infecitons. It even says that on the commercials about the
>respiratory infections. What the heck ever happened to the other meds they
>used to give you for asthma.
>
>He wants to take me off the atenolol and put me on a bp med that has a
>diuretic in it. With my dehydration issues I can't take a diuretic.
>
>He says the diflucin will kill me so he wants me on nystatin. before I could
>tell him why I am not on nystatin, he went on to something else. I am
>allergic to nystatin.
>
>He is really arrogant, and loud and thinks he is Dr. God. He wants me off
>all the meds the other dr gave me that seemed to work till just this last
>week. My bp is going back up again, but then I have been in massive pain. I
>did have the bp down to the 120's over 60-70's.
>
>I told him I can't afford all these med changes and prices of the new meds
>he wants me on.
>
>I have some meds coming thru drug companys that I can get them for cheaper
>or free and he wants to switch all these now.

"Squirrely" <sqjo@sonic.net> wrote in message
news:46e64682$0$84926$742ec2ed@news.sonic.net...
> ok glad it is getting better already Kelly.
>
> He wants me off the albuterol. He wants me on advair and I don't want to
> go there, I have heard too many that are on that one have had surgery to
> drain the fluids off their chest and many many hospital stays because of
> repeated respiratory infecitons. It even says that on the commercials
> about the respiratory infections. What the heck ever happened to the other
> meds they used to give you for asthma.
>
> He wants to take me off the atenolol and put me on a bp med that has a
> diuretic in it. With my dehydration issues I can't take a diuretic.
>
> He says the diflucin will kill me so he wants me on nystatin. before I
> could tell him why I am not on nystatin, he went on to something else. I
> am allergic to nystatin.
>
> He is really arrogant, and loud and thinks he is Dr. God. He wants me off
> all the meds the other dr gave me that seemed to work till just this last
> week. My bp is going back up again, but then I have been in massive pain.
> I did have the bp down to the 120's over 60-70's.
>
> I told him I can't afford all these med changes and prices of the new meds
> he wants me on.
>
> I have some meds coming thru drug companys that I can get them for cheaper
> or free and he wants to switch all these now.
>
>
> --
> Love and Hugs to all
> Jo the squirrely one

Hi Jo,,,, If you did not tell the doctor that you already know that you are
allergic to a different medicine,,,,,, You and your doctor have big
problems that may cost you your life. I am sure that I have mis-understood
what has taken place. I really do not think it is the right thing to do to
tell someone that they are prayed for all the time but you are prayed for
everyday and many of us worry about what takes place in your life.
Here is to better days,,, hmm, better nights too.
Harv

My dr that they had at the clinic left. So now they have this dr. I didn't
have a choice, no other dr it appears wants to work there.

--
Love and Hugs to all
Jo the squirrely one

>A doctor who doesn't listen to his patient is scary. I can't
> remember why the switch, but this does not sound like a good
> situation.
>
> Joan

Harv,

that one was my fault. So you got me there. I have a long allergy sheet that
I carry with me and have given to them and they have it on the front of my
chart. But I had forgotten to list that one till he mentioned it and then I
remembered that right before I got boasted out by Kaiser, that I had that
reaction when they tried me on that med. So I have to add it to the list
now.

But hey this is the brainy person that forgot she was allergic to fish and
had some, just to remind her why she was not having fish anymore. ;-)

Thanks Harv for the prayers. I know they have been coming because I can feel
what the Lord is doing for me and I know that prayers are making the
difference. Thank you all for that. I do so appreciate it.

--
Love and Hugs to all
Jo the squirrely one
>
> Hi Jo,,,, If you did not tell the doctor that you already know that you
> are allergic to a different medicine,,,,,, You and your doctor have big
> problems that may cost you your life. I am sure that I have
> mis-understood what has taken place. I really do not think it is the
> right thing to do to tell someone that they are prayed for all the time
> but you are prayed for everyday and many of us worry about what takes
> place in your life.
> Here is to better days,,, hmm, better nights too.
> Harv
>
>

Jo,

Does Dr. God have a supervisor? Could you go to that person and
explain what you've told us? If there is no supervisor, what about
talking to the Dr.'s nurse? Nurses usually have a little more time to
listen to a patient - she/he could update the allergy chart & add
comments about reactions to medications and/or other illnesses (like
the dehydration issues) so the Dr. can see why changing your meds
would be a problem.

Of course, sometimes you just have to yell at the doctors to get their
attention. Give that a try, if nothing else works!

Shannon

No there is no manager around there. This is a new clinic that opened in
April. Most of the other clinics connected with them are in San Jose and I
don't know how to contact them.

The nurse there lies alot. found that out yesterday when talking to her
about getting some meds refilled that now it looks like they won't do. So I
am totally out of luck with my meds now too.

Called around on the list of free and low income clinics that I found online
and none of them are free or low income and half of them shouldn't even be
on that list, like heart drs, pain drs, etc. So whoever did that list, was
just putting down drs and not making sure they were free or low income.

Cant afford to get that upset with them at this point since my bp is up
again. Just have to let it go I guess and hopefully can find some clinic or
something that will help me.


--
Love and Hugs to all
Jo the squirrely one

> Jo,
>
> Does Dr. God have a supervisor? Could you go to that person and
> explain what you've told us? If there is no supervisor, what about
> talking to the Dr.'s nurse? Nurses usually have a little more time to
> listen to a patient - she/he could update the allergy chart & add
> comments about reactions to medications and/or other illnesses (like
> the dehydration issues) so the Dr. can see why changing your meds
> would be a problem.
>
> Of course, sometimes you just have to yell at the doctors to get their
> attention. Give that a try, if nothing else works!
>
> Shannon
>

Hi daughter,

Squirrely wrote:
>
> The nurse there lies alot. found that out yesterday when talking to
> her about getting some meds refilled that now it looks like they
> won't do. So I am totally out of luck with my meds now too.

Have you tried https://www.pparx.org/Intro.php

GrampaHugs,
Alex,

--

Any information is included for informational
or entertainment purposes only, is based on my
personal experiences & is an expression of my opinion.

************************************************** **
* Love radiating from 45.10n x 93.30w M/SP Mn
* http://home.comcast.net/~apbarna/
* http://goldenmist.org/ahr_faq/index.html
* http://goldenmist.org/grampahugs/
* http://goldenmist.org/
************************************************** **

yeah I have but it is up to having a dr refill them now and I don't have a
dr. Can't find one I can afford either.


--
Love and Hugs to all
Jo the squirrely one

> Hi daughter,
>
> Squirrely wrote:
>>
>> The nurse there lies alot. found that out yesterday when talking to
>> her about getting some meds refilled that now it looks like they
>> won't do. So I am totally out of luck with my meds now too.
>
> Have you tried https://www.pparx.org/Intro.php
>
> GrampaHugs,
> Alex,
>
> --
>
> Any information is included for informational
> or entertainment purposes only, is based on my
> personal experiences & is an expression of my opinion.
>
> ************************************************** **
> * Love radiating from 45.10n x 93.30w M/SP Mn
> * http://home.comcast.net/~apbarna/
> * http://goldenmist.org/ahr_faq/index.html
> * http://goldenmist.org/grampahugs/
> * http://goldenmist.org/
> ************************************************** **

On Sep 8, 11:39 pm, "d'huit" <threeceda...@comcast2.net> wrote:
> ((((((((((((((((((((((donnag)))))))))))))))))))) i don't know anything,
> except that i care about you and am as glad as you are that lupus was ruled
> out, sweetie.
>
> kate
>
> "Donna G." <DKGBee...@webtv.net> wrote in message
>
> news:6512-46E34737-267@storefull-3112.bay.webtv.net...
>
> During my last hospital stay, the doctors drew a boat load of bloodwork,
> some of which were specialized tests that had to be sent out to mayo
> clinic labs. One of the tests was a TPMT (thiopurine
> methyltransferase)? Any of you familiar with this test or had it done
> before?
>
> The doctors are thinking I may have something called CVIDS (common
> variable immunodeficiency syndrome?)
>
> So far, the tests that have come back abnormal are high sed rate and
> high crp which are always high for me,
> CH50 162 (ref=52-128),
> IGG 460 (ref=620-1520),
> IGM 32 (ref=60-370),
> and then the TPMT came back at 15.3 (ref=15.1-26.4 .... 15.1-26.4 =
> normal, 6.3-15.0 = heterozygous for low TPMT, <6.3 = homozygous for
> low TPMT) ) and had a side note that says: In this sample, the TPMT is
> at the very low end of normal range. This activity does not allow
> reliable designation of this patient as either a carrier or non-carrier
> for the TPMT mutation. We suggest careful monitoring this patients CBC.
>
> They thankfully were able to rule out lupus, which they were really
> thinking I had, thank goodness!!!
>
> Echo-cardiogram also showed some plueral effusion which hopefully will
> explain why, as of late, I have been retaining sooooo much fluid!
>
> Uggggh, never a dull moment in auto=immune land, huh?!!!
> .
> .
> .
> .
>
> Donna
> .
> .
> .
> .
> 1. ANGELS EXIST, but some times, since they don't all have wings, we
> call them FRIENDS......
>
> 2. J.K.M.A.

Donna:

I know about CVIDS! I have that. It has to do with low t-cells. No
nothing like aides. What happened with me was that I would get sick
constantly and then no antibiotic would work. You have to have enough
of these t-cells to be able to have antibiotics work. So I had to
have I.V.'s of Gamma. Weekly had to go in for 3 hours and sit in a
chair and get this. Very expensive. $10,000.00 after insurance. The
insurance companies want to call it "experimental" and so we had to
sue them to get them to pay. I later got divorced, lost insurance and
take lots of vitamins, including prenatal vitamins - I'm 51. If I get
sick and can't shake it fairly quickly then it all starts again. Of
course, it's good I'm well right now and for the past few years
because I couldn't afford it. Now when I get a cold -it won't go away
by itself, it always then goes into something else and I get 1000mg of
Rocephen a day for a few days and I'm well again. When I was having
the gamma, I would have dizzy spells and "high" feelings etc. Hope
you feel better.

NotYet1121

> Donna:
>
> I know about CVIDS! I have that. It has to do with low t-cells. No
> nothing like aides. What happened with me was that I would get sick
> constantly and then no antibiotic would work. You have to have enough
> of these t-cells to be able to have antibiotics work. So I had to
> have I.V.'s of Gamma. Weekly had to go in for 3 hours and sit in a
> chair and get this. Very expensive. $10,000.00 after insurance. The
> insurance companies want to call it "experimental" and so we had to
> sue them to get them to pay. I later got divorced, lost insurance and
> take lots of vitamins, including prenatal vitamins - I'm 51. If I get
> sick and can't shake it fairly quickly then it all starts again. Of
> course, it's good I'm well right now and for the past few years
> because I couldn't afford it. Now when I get a cold -it won't go away
> by itself, it always then goes into something else and I get 1000mg of
> Rocephen a day for a few days and I'm well again. When I was having
> the gamma, I would have dizzy spells and "high" feelings etc. Hope
> you feel better.
>
> NotYet1121

I had a friend that had to have that. It was really hard on his
kidneys but did whatever was needed for his condition. He was a VN vet and
he and his wife would stay at my house when he would have a couple of week
stay at the Vet. hospital here in Houston. He also had larger than a golf
ball sized lumps under his skin. Agent Orange.... Sorry,,, just thoughts
from the past from a different time.
Harv

Not Yet,


Do you mind if I ask, how long ago it has been since you were diagnosed
and also how long ago it has been since you had to have the infusions?

From what I have been told, thus far, if I do in fact end up having the
CVID, I have been told that it would require a 3-4 hour infusion once a
month, thankfully not once a week!!!

Also, I would have to do some serious checking into insurance before
going for the infusions. No way could I ever afford even one infusion
if they are that expensive!!!

I so appreciate you sharing what you have so far! Thank you very much,
it really helps to have someone else who has been down this road before!

..
..
..
..


Donna
..
..
..
..
1. ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......

2. J.K.M.A.

Yikes, Harv, sounds absolutely dreadful!!!
..
..
..
..


Donna
..
..
..
..
1. ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......

2. J.K.M.A.

Kelly wrote:
The HCL and
> the steroids together deplete potassium but the spiroton increases
> potassium. Both have reduced my feet to 1/2 their size so I can wear shoes

What's HCL?

Donna,

still wishing the best for you in all things. Whatever you have to do, may
it be a blessing for you.


--
Love and Hugs to all
Jo the squirrely one

> Not Yet,
>
>
> Do you mind if I ask, how long ago it has been since you were diagnosed
> and also how long ago it has been since you had to have the infusions?
>
> From what I have been told, thus far, if I do in fact end up having the
> CVID, I have been told that it would require a 3-4 hour infusion once a
> month, thankfully not once a week!!!
>
> Also, I would have to do some serious checking into insurance before
> going for the infusions. No way could I ever afford even one infusion
> if they are that expensive!!!
>
> I so appreciate you sharing what you have so far! Thank you very much,
> it really helps to have someone else who has been down this road before!

>
> Donna