Recent experience with IVIG infusions

September 6, 2005

I have not been able to keep up reading as I have either been sick

or trying to recover. I want to thank the contributors here for the

glutathione suggestion of suppository as I now get an IV dose about

once every ten days and then I administer a 200mg dose of the

glutathione suppository three times a week. I do not see an drastic

improvement like when I receive a gamma globulin infusion but then

we are talking apples and oranges here. I just wanted to note that I

do believe it is helping in a supportive way and I only got two

infections in the past six weeks instead of one every week.

The last time I was here I spoke of the attitude of my infectious

disease doctor. I spoke with my pain doctor about his attitude that

all my problems were due to the fact that I take pain medications

and his opinion is that I'm a crazy addicted woman who needs a

hospital detox. My pain doctor told me that after reviewing my

chart, she think the ID doctor is the one who needs a detox.....to

pull his head out of his ask !!!! But then she went on to say that

he appears to not know anything about pain considering that if I

were to have even one of the diseases, it would justify my pain.

Continuing to add that I have three diseases which all have pain as

a major component, therefore she considers that to be off of pain

medications would only burden my system unecessarily. I expressed

my fears that possibly fentanyl was causing the lesions on my

brainstem, being that it is a new drug and also I am finding that

while fentanyl doesn't promote drowsiness as some of the other pain

medications, but I received an email that stated it does promote

sleep apnea more than the other pain meds. I have since lost that

email and I don't even know who it came from. I havent' contacted

the company who makes Duragesic yet, as do you really think they

will tell me that their product causes a deadly form of sleep

apnea? My pain doctor's recommendation is that I have a morphine

pump put in. I saw the psychiatrist and got the okay for the trial,

but then backed out at the last minute, simply fearing the

possibility of promoting another pathogen invitation to enter my

body. I do not know anything about these pumps, but if they fill

them once a month, there has to be a port. As noted with the MRSA

last year, I'm NOW kinda nervous with these ports. Thus I need to do

some more research so I understand it better. In some ways maybe I

believe that there are better answers just around the corner, both

for ridding myself of this disease and of diminishing the pain on a

not so toxic level. But I need to do something and if I wouldn't

get sick so much I might be more productive. It is a double edge

sword for me. After my IVIG last month, I gained some energy and my

acitivty level at home increased. My pain level also increased, big

time. My pain is definately tied in with the infectious condition.

When I first started on Zithromax, that was probably my biggest gain

in getting better. But then I went on to the IV antibiotics and now

back o zithromax I am not getting the benefit.

How quickly I digress, on to the STORY

I've been low IgG since 1999 and have not had an immunoloist for

over a year to administer IVIG (intravenous human gammaglobulin)

although I've had it about 6 times so far in the past .1999-2004 I

believe that it was the dose I received in Dec2004 that pulled me

through the MRSA as the vancamyacin was not kicking in. I haven't

received an IVIG dose since then because the ID doctor wanted to see

how low I would go....(ridiculous) I knew it was dropping, as the

infections were closer and closer. Finally a little more than a

month ago I went in for an IVIG infusion at an infusion center where

there big business is administering antibiotics. It was two pm and

they intended on administering two bags full in three hours. I

didn't think it was possible as before one bag took three hours.,

but they were determined. About thirty minutes into the process I

started yawning, really big and really dramatically. I couldn't

stop. Then my muscles started jerking wildly. All of them.

Uncontrollably . It was very upsetting, but I've been through a lot

and I really needed this gamma globulin so I hung in there. I asked

them to reduce the flow of the IV and when they did, the symptoms

did abate somewhat, but they were determined to quit work by five

o'clock so they tried to give me a big , big dose of Benedryl to

knock me out. Finally I did pass out, although I don't think it was

from their benedryl as I'm quite tolerant of benedryl. I believe it

was from the lack of oxygen as I could feel my muscles @lungs were

contracting and jerking. Part of me was scared and I really didn't

know what to do. This has NEVER happened before and they kept asking

me if I was sure I had never had a reaction to IVIG before and I

told them the truth, but I don't think they believed me. Obviously

with spasming, jerking arms and legs flinging through the air, I

didn't exactly have the air of composure. I tried my best to be calm

and to answer in an affirmative manner. But then as I said, I just

collasped which they saw as a sign the benedryl was working and then

they upped the flow of the gamma.

Testing revealed that within the month my IgG was dropping fast. I

want to express here, that I saw an immediate boost after that

infusion. It was FABULOUS....No, I didn't go dancing, frankly I

wasn't sure just how much I could push it, so I contained my

increased activities to around the house, My mental fog was

noticebly lifted. I'm sure everyone here will understand what I'm

trying to explain. It wasn't so much that my physical activities

did a 180 turnaround. It was more about the " planning " of things,

the thinking again in possiblities instead of restriction.

Unfortunately just about the time I was starting to trust my

strength and stamina, I started swiftly going downhill. I had about

one good week, maybe 10 days. Like I said, it wasn't so much about

what I actually did, but more about starting to think that I could

once again be part of this world. I could tell that my IgG was going

down and it was after they tested me, they sceduled another infusion

because indeed I was low again. I really believe that this doctor

doesnt' want to give me these infusions. I understand that from an

Infectious disease doctor's standpoint, this is an invitation for me

to now contract every disease and disorder that the donors may

carry, of this blood product I'm receiving (the gamma globulin)I'm,

sure a lot of people donate blood who have some pretty nasty bugs in

them, but I don't see that I have a choice. I am simply not able to

make enough IgG to keep up with whatever is attacking my immune

system.

Round Two.....I go in for my second infusion prepared by taking

Benedryl early, before leaving the house. Once again, within thirty

minutes the yawning started, the muscles started jerking

EVERYWHERE...Will someone please tell me , How can anyone believe

that I am just exaggerating? This time the reaction was so severe it

started to cut off my breathing by the lung muscles spasming . While

they did eventually stop the infusion with only a small portion

being administered, I felt truly intimidated by the attitude of the

infusion techs. They acted extremely impatient with me, insinuating

that I could stop the jerking if I wanted to. Mostly they kept

asking again and again if I was sure I had had these infusions

before. What, did they think that on the twentieth time they asked

that question I was going to confess to some incidious lie? It was

almost as if I was suspected of being a gamma globulin addict. Then

they started hounding my husband, who then started yelling for me to

stop the jerking and yawning. It was simply horrible at which time I

thought my lungs were going to suffocate me. At any rate Im

beginning to believe that empathy and comppassion is a pipe dream

that is only reserved for patients willing to die just so the

medical world will have someone to poke and prod.

HERE IS MY QUESTION AND DELIMMA.... Right before one of the techs

snapped at me, " Well, we are just going to stop the infusion if you

are going to do this. " it was mentioned that this gamma globulin

product doesn't have any contridictions if you IgA is normal. I'm

sure they looked it up, because when I had the last reaction, they

confessed that they didn't know what the contradictions were for

gamma globulin. And this is their job to know.

Immediately when she mentioned the IgA levels my ears perked up. I

knew that in the past I have also had low IgA so I got out my lab

work to see what my IgA levels were . As I read the report it showed

that normal IgA levels are from 81 to 456 (give or take a few) I

saw that my IgA level of four days prior was 86. So, I asked the

tech, " Is a reading of 86 low enough to raise any red flags? " She

told me that my IgA level was normal, that it doesn't matter what

the number per say is, as long as it is within the range set forth "

Which seems completely contrary to why there are test average levels

then. Why not just test everyone like they do for a pregnancy tests.

Either yes or no? I've been told that already labs are starting to

not test the individual sub-levels of IgG and only give a total IgG

level reading. I noticed that when receiving my Lyme diagnosis from

Dr. Harvey, that he consulted the IgG levels in making his

determination along with the positive test result from Bowen labs.

How will anyone ever know to search for inappropriate pathogens if

they ignore what our own immune system is " screaming " at them. I was

told that the immune disease that I have is rare, but I don't

necessarily believe that just because there is lack of testing or

directional testing, that it proves something is rare. It just

proves that people are too stupid to see what is staring them in the

face. Obviously those technicians suspected something regarding my

adverse reaction and what was reported by others with a low IgA in

addition to IgG. I feel that they had a canned response when I

pointed out that my level was close to being low. But I don't know,

maybe I'm barking up the wrong tree.

All I know is that I don't like having to take such risks as what

comes with IgG infusions, but I don't have a choice. I take lots and

lots of supplements and I simply am not either able to make enough

gamma globulin, albumin, etc. or something is using it up faster

than I can make it. I don't understand why I have to keep

reinventing the wheel, convincing practically the whole congress

that I am worthy.

Has anyone here had similiar experience or any insight as to why I

might have had such a severe reaction to this gamma when I have used

it many times before? Any ideas would be appreciated. I used to

frequent three or four groups for ideas, etc. but over time, I've

had to cut back activities as I am only able to sit long enough to

read the most important words. Those spoken here.

Peg

September 6, 2005

Lanelle

I just went back and had a look at my notes on you and your nasal

swab that you sent me. You already had an MRSA back then. I got a

sample of your coag neg staph and a staph areus from that swab.Path

lab wise it definately is an MRSA.anytime you do surgery of any type

your likely to give yourself an MRSA infection.I know the vanco

would give you some help, but it really isn't a very good therapy on

it's own according to the manufacturers instruction sheet.The coag

neg staph is also resistant to vanco after a short while, but can't

be shown on pathology tests- it's more a case of blood agar plate

testing that varies wildly to the plate pour method labs use.I feel

tarello also points to this.

tony

>

> I have not been able to keep up reading as I have either been sick

> or trying to recover. I want to thank the contributors here for

the

> glutathione suggestion of suppository as I now get an IV dose

about

> once every ten days and then I administer a 200mg dose of the

> glutathione suppository three times a week. I do not see an

drastic

> improvement like when I receive a gamma globulin infusion but then

> we are talking apples and oranges here. I just wanted to note that

I

> do believe it is helping in a supportive way and I only got two

> infections in the past six weeks instead of one every week.

>

> The last time I was here I spoke of the attitude of my infectious

> disease doctor. I spoke with my pain doctor about his attitude

that

> all my problems were due to the fact that I take pain medications

> and his opinion is that I'm a crazy addicted woman who needs a

> hospital detox. My pain doctor told me that after reviewing my

> chart, she think the ID doctor is the one who needs a detox.....to

> pull his head out of his ask !!!! But then she went on to say that

> he appears to not know anything about pain considering that if I

> were to have even one of the diseases, it would justify my pain.

> Continuing to add that I have three diseases which all have pain

as

> a major component, therefore she considers that to be off of pain

> medications would only burden my system unecessarily. I expressed

> my fears that possibly fentanyl was causing the lesions on my

> brainstem, being that it is a new drug and also I am finding that

> while fentanyl doesn't promote drowsiness as some of the other

pain

> medications, but I received an email that stated it does promote

> sleep apnea more than the other pain meds. I have since lost that

> email and I don't even know who it came from. I havent' contacted

> the company who makes Duragesic yet, as do you really think they

> will tell me that their product causes a deadly form of sleep

> apnea? My pain doctor's recommendation is that I have a morphine

> pump put in. I saw the psychiatrist and got the okay for the

trial,

> but then backed out at the last minute, simply fearing the

> possibility of promoting another pathogen invitation to enter my

> body. I do not know anything about these pumps, but if they fill

> them once a month, there has to be a port. As noted with the MRSA

> last year, I'm NOW kinda nervous with these ports. Thus I need to

do

> some more research so I understand it better. In some ways maybe I

> believe that there are better answers just around the corner, both

> for ridding myself of this disease and of diminishing the pain on

a

> not so toxic level. But I need to do something and if I wouldn't

> get sick so much I might be more productive. It is a double edge

> sword for me. After my IVIG last month, I gained some energy and

my

> acitivty level at home increased. My pain level also increased,

big

> time. My pain is definately tied in with the infectious condition.

> When I first started on Zithromax, that was probably my biggest

gain

> in getting better. But then I went on to the IV antibiotics and

now

> back o zithromax I am not getting the benefit.

>

> How quickly I digress, on to the STORY

>

> I've been low IgG since 1999 and have not had an immunoloist for

> over a year to administer IVIG (intravenous human gammaglobulin)

> although I've had it about 6 times so far in the past .1999-2004 I

> believe that it was the dose I received in Dec2004 that pulled me

> through the MRSA as the vancamyacin was not kicking in. I haven't

> received an IVIG dose since then because the ID doctor wanted to

see

> how low I would go....(ridiculous) I knew it was dropping, as the

> infections were closer and closer. Finally a little more than a

> month ago I went in for an IVIG infusion at an infusion center

where

> there big business is administering antibiotics. It was two pm and

> they intended on administering two bags full in three hours. I

> didn't think it was possible as before one bag took three hours.,

> but they were determined. About thirty minutes into the process I

> started yawning, really big and really dramatically. I couldn't

> stop. Then my muscles started jerking wildly. All of them.

> Uncontrollably . It was very upsetting, but I've been through a

lot

> and I really needed this gamma globulin so I hung in there. I

asked

> them to reduce the flow of the IV and when they did, the symptoms

> did abate somewhat, but they were determined to quit work by five

> o'clock so they tried to give me a big , big dose of Benedryl to

> knock me out. Finally I did pass out, although I don't think it

was

> from their benedryl as I'm quite tolerant of benedryl. I believe

it

> was from the lack of oxygen as I could feel my muscles @lungs were

> contracting and jerking. Part of me was scared and I really didn't

> know what to do. This has NEVER happened before and they kept

asking

> me if I was sure I had never had a reaction to IVIG before and I

> told them the truth, but I don't think they believed me. Obviously

> with spasming, jerking arms and legs flinging through the air, I

> didn't exactly have the air of composure. I tried my best to be

calm

> and to answer in an affirmative manner. But then as I said, I just

> collasped which they saw as a sign the benedryl was working and

then

> they upped the flow of the gamma.

>

> Testing revealed that within the month my IgG was dropping fast. I

> want to express here, that I saw an immediate boost after that

> infusion. It was FABULOUS....No, I didn't go dancing, frankly I

> wasn't sure just how much I could push it, so I contained my

> increased activities to around the house, My mental fog was

> noticebly lifted. I'm sure everyone here will understand what I'm

> trying to explain. It wasn't so much that my physical activities

> did a 180 turnaround. It was more about the " planning " of things,

> the thinking again in possiblities instead of restriction.

> Unfortunately just about the time I was starting to trust my

> strength and stamina, I started swiftly going downhill. I had

about

> one good week, maybe 10 days. Like I said, it wasn't so much about

> what I actually did, but more about starting to think that I could

> once again be part of this world. I could tell that my IgG was

going

> down and it was after they tested me, they sceduled another

infusion

> because indeed I was low again. I really believe that this doctor

> doesnt' want to give me these infusions. I understand that from an

> Infectious disease doctor's standpoint, this is an invitation for

me

> to now contract every disease and disorder that the donors may

> carry, of this blood product I'm receiving (the gamma globulin)

I'm,

> sure a lot of people donate blood who have some pretty nasty bugs

in

> them, but I don't see that I have a choice. I am simply not able

to

> make enough IgG to keep up with whatever is attacking my immune

> system.

>

> Round Two.....I go in for my second infusion prepared by taking

> Benedryl early, before leaving the house. Once again, within

thirty

> minutes the yawning started, the muscles started jerking

> EVERYWHERE...Will someone please tell me , How can anyone believe

> that I am just exaggerating? This time the reaction was so severe

it

> started to cut off my breathing by the lung muscles spasming .

While

> they did eventually stop the infusion with only a small portion

> being administered, I felt truly intimidated by the attitude of

the

> infusion techs. They acted extremely impatient with me,

insinuating

> that I could stop the jerking if I wanted to. Mostly they kept

> asking again and again if I was sure I had had these infusions

> before. What, did they think that on the twentieth time they asked

> that question I was going to confess to some incidious lie? It was

> almost as if I was suspected of being a gamma globulin addict.

Then

> they started hounding my husband, who then started yelling for me

to

> stop the jerking and yawning. It was simply horrible at which time

I

> thought my lungs were going to suffocate me. At any rate Im

> beginning to believe that empathy and comppassion is a pipe dream

> that is only reserved for patients willing to die just so the

> medical world will have someone to poke and prod.

>

> HERE IS MY QUESTION AND DELIMMA.... Right before one of the

techs

> snapped at me, " Well, we are just going to stop the infusion if

you

> are going to do this. " it was mentioned that this gamma globulin

> product doesn't have any contridictions if you IgA is normal. I'm

> sure they looked it up, because when I had the last reaction, they

> confessed that they didn't know what the contradictions were for

> gamma globulin. And this is their job to know.

> Immediately when she mentioned the IgA levels my ears perked up.

I

> knew that in the past I have also had low IgA so I got out my lab

> work to see what my IgA levels were . As I read the report it

showed

> that normal IgA levels are from 81 to 456 (give or take a few) I

> saw that my IgA level of four days prior was 86. So, I asked the

> tech, " Is a reading of 86 low enough to raise any red flags? " She

> told me that my IgA level was normal, that it doesn't matter what

> the number per say is, as long as it is within the range set

forth "

> Which seems completely contrary to why there are test average

levels

> then. Why not just test everyone like they do for a pregnancy

tests.

> Either yes or no? I've been told that already labs are starting

to

> not test the individual sub-levels of IgG and only give a total

IgG

> level reading. I noticed that when receiving my Lyme diagnosis

from

> Dr. Harvey, that he consulted the IgG levels in making his

> determination along with the positive test result from Bowen labs.

> How will anyone ever know to search for inappropriate pathogens if

> they ignore what our own immune system is " screaming " at them. I

was

> told that the immune disease that I have is rare, but I don't

> necessarily believe that just because there is lack of testing or

> directional testing, that it proves something is rare. It just

> proves that people are too stupid to see what is staring them in

the

> face. Obviously those technicians suspected something regarding my

> adverse reaction and what was reported by others with a low IgA in

> addition to IgG. I feel that they had a canned response when I

> pointed out that my level was close to being low. But I don't

know,

> maybe I'm barking up the wrong tree.

> All I know is that I don't like having to take such risks as what

> comes with IgG infusions, but I don't have a choice. I take lots

and

> lots of supplements and I simply am not either able to make enough

> gamma globulin, albumin, etc. or something is using it up faster

> than I can make it. I don't understand why I have to keep

> reinventing the wheel, convincing practically the whole congress

> that I am worthy.

>

> Has anyone here had similiar experience or any insight as to why I

> might have had such a severe reaction to this gamma when I have

used

> it many times before? Any ideas would be appreciated. I used to

> frequent three or four groups for ideas, etc. but over time, I've

> had to cut back activities as I am only able to sit long enough to

> read the most important words. Those spoken here.

> Peg

September 6, 2005

Lanelle click on photo's and have a look at my notes on you, and the

dates. When did you get that STAPH AREUS INFECTION?If you need

anything interpreted let me know as the scan isn't that clear.