Responding back / Recent experience with IVIG infusions

[Guest guest]

Thanks for the replies everyone, I shall try to answer the questions

but first I'll fill you in on my appt. this morning.

Since the infusion place wouldn't slow down the IV the second time

even after I had a reaction the first time and they saw that when

they slowed it down, the symptoms diminished, it was obvious they

thought they knew better. I don't have the energy to argue with

people like that, so the doctor okayed for me to use another infusion

place. OF course wouldn't you know I have to resubmit to insurance

which of course is of no urgency to anyone but me. But I still think

it is the best, will just protect myself more in the meantime. Last

month I had two infections, both times when I had doctor's

appointments. It was so obvious to me that I was a sitting duck with

minimal defenses, but to convince a medical person takes a sledge

hammer and no mercy.

I have just a quick question and will continue. Does anyone else here

feel that they have to " motivate " medical people to want to treat

them? Sometimes it would be really nice if someone would throw me an

encouragement or two. I realized that not one person has given me any

indicator to consider that they were motivating me to get well. If

you bring it up, are they embarrassed for themselves? No, they make a

comment like, " Well, no one has a bigger vested interested in your

health than you do. " Huh? like what is that? A lame excuse for

saying " I'm not paid to extend any courtesies to try and help your

healing process along? "

I come home from doctor's appoitments and tech visits completely

exhausted from blowing smoke up peoples patooties.

Tony, the MRSA that you noted was probably remanent from the

peritonitis in 1998. Sorry for the bad scans, I hired someone to help

me out and should have done it myself. I will work on them. But the

MRSA that I got in Dec 2004/Jan 2005/Feb 2005 was from the IV port.

Dr. Harvey had quit sept2005 and I was begging doctor's to refer me

to someone to remove it, but couldn't seem to motivate anyone of my

urgency. I was trying to take care of it, but right at that time home

health was coming to do my IVIG and I believe that I got the MRSA

from my home health nurse as she told me that all of her patients had

current MRSA's

The bad thing about being sick a long time is that no one pays any

attention to what you say anymore. The last thing I remember was dec

15th. Family let me lay on the sofa for almost two weeks when I sat

bolt upright one aft. and said, " Get me to the ER, now! " That was

about the only ER visit I've every had that was swift and decisive

and professional.

I'm sorry I failed to mention that there was two more antibiotics

along with the vancomacin. As you know with the vanc. you have to

keep getting tests to check levels and mine was fine, but when after

two weeks I was released to go home, the doctor cut my vanc dose in

half. The port was still in despite my requests, cause they wanted

to use it for the vanc.

Once they cut the dose in half, I went down hill and it took much

longer for me to climb back up. Plus the doctor prescribed a triple

antibiotic external cream to put at the site. Bad idea because the

bacteria used the compound to spread even more. They went from inside

to now an ugly infection outside the port area. FINALLY....they

relented and took the port out and put another one in my upper arm to

finish the treatment which took another three + weeks. If they had

taken the port out which was @ my chest about six inches from the

heart) right away I think I could have gotten better faster.

Don't you just love the blanket statements that doctor's make based

upon generalized info. During my MRSA infection I saw a lyme doctor

Stein in Dallas who told me that I didn't need any lyme treatment

anyway because Vancomyacin was a Lyme antibiotic. Now this was

without regard to any resistance I may have built up, or whether or

not I would be having that treatment much longer, etc. It is those

statements that tell a patient, " this doctor is just throwing

anything at you looking for an excuse to get rid of you. " No amount

of tea in china was going to reason with her. What was her advise to

me? " That I should do a wide search in google to try and find a

doctor..... " .(Where has she been, under a rock??)

I laughed and told her, " That is how I found you. "

Jill, I'm with you.....I don't care how long it takes. I always take

a book and then wind up falling asleep within a few minutes. I was

almost sure it was the infusion rate, because when I insisted they

turn it down, the symptoms went down, but then I drifted off and they

pumped up the volume again. Then the second time they simply refused

to do it slow, instead giving me injections of steriods and bendryl

until I was drunk. That was their solution. So I'm off to a new place

and I'll be really firm now that I've gotten more confidence after

hearing the advice here. Thanks Penny for the confirmation, I needed

that.

Don't you wonder if the business of medicine will ever get it.....?

That everyone is different and we are not molecules and test tubes.

They simply fail to compute the human variable.

If there was one thing I could give every patient worldwide it would

be a never failing sense of what their own body is telling them and

to let NO ONE talk them out of what their gut says.

p.s. forgive me for screwing up the spelling on vancomycin, I'm tired.

> >

> >

> > 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

[Guest guest]

Lanelle

Your giving yourself the MRSA everytime you poke yourself or

inflammation starts up.Your your own resevoir of MRSA infection, the

problem is the bone marrow part of the infection with these types of

organisms that give you your problems. IMO.You could capture these 2

organisms side by side in a distant site that is bothering you.You

have to give these 2 orgnisms respect whenever any treatment is

being attempted.Osteomyelitis of your skeleton especially the pelvic

bone is definately something you'd be suffering, at a guess?

I don't know lanelle it's tough but the treatment for those 2 isn't

simple. 10 antibiotics at once and you can still get a bigger

infection than you started out with.

> > >

> > >

> > > 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

[Guest guest]

Hi, well, I think the system has broken down, as its capitalist

based...and I think that you have to advocate for yourself. Expecting

people to solve complex health issues because they are nurses or

doctors is just expecting too much.

So, you have to be very firm.

-- In infections , " Peg " <lanelle@h...>

wrote:

>

>

>

> Thanks for the replies everyone, I shall try to answer the

questions

> but first I'll fill you in on my appt. this morning.

>

> Since the infusion place wouldn't slow down the IV the second time

> even after I had a reaction the first time and they saw that when

> they slowed it down, the symptoms diminished, it was obvious they

> thought they knew better. I don't have the energy to argue with

> people like that, so the doctor okayed for me to use another

infusion

> place. OF course wouldn't you know I have to resubmit to insurance

> which of course is of no urgency to anyone but me. But I still

think

> it is the best, will just protect myself more in the meantime. Last

> month I had two infections, both times when I had doctor's

> appointments. It was so obvious to me that I was a sitting duck

with

> minimal defenses, but to convince a medical person takes a sledge

> hammer and no mercy.

>

> I have just a quick question and will continue. Does anyone else

here

> feel that they have to " motivate " medical people to want to treat

> them? Sometimes it would be really nice if someone would throw me

an

> encouragement or two. I realized that not one person has given me

any

> indicator to consider that they were motivating me to get well. If

> you bring it up, are they embarrassed for themselves? No, they make

a

> comment like, " Well, no one has a bigger vested interested in your

> health than you do. " Huh? like what is that? A lame excuse for

> saying " I'm not paid to extend any courtesies to try and help your

> healing process along? "

> I come home from doctor's appoitments and tech visits completely

> exhausted from blowing smoke up peoples patooties.

>

> Tony, the MRSA that you noted was probably remanent from the

> peritonitis in 1998. Sorry for the bad scans, I hired someone to

help

> me out and should have done it myself. I will work on them. But the

> MRSA that I got in Dec 2004/Jan 2005/Feb 2005 was from the IV port.

> Dr. Harvey had quit sept2005 and I was begging doctor's to refer me

> to someone to remove it, but couldn't seem to motivate anyone of my

> urgency. I was trying to take care of it, but right at that time

home

> health was coming to do my IVIG and I believe that I got the MRSA

> from my home health nurse as she told me that all of her patients

had

> current MRSA's

> The bad thing about being sick a long time is that no one pays any

> attention to what you say anymore. The last thing I remember was

dec

> 15th. Family let me lay on the sofa for almost two weeks when I sat

> bolt upright one aft. and said, " Get me to the ER, now! " That was

> about the only ER visit I've every had that was swift and decisive

> and professional.

> I'm sorry I failed to mention that there was two more antibiotics

> along with the vancomacin. As you know with the vanc. you have to

> keep getting tests to check levels and mine was fine, but when

after

> two weeks I was released to go home, the doctor cut my vanc dose in

> half. The port was still in despite my requests, cause they

wanted

> to use it for the vanc.

> Once they cut the dose in half, I went down hill and it took much

> longer for me to climb back up. Plus the doctor prescribed a triple

> antibiotic external cream to put at the site. Bad idea because the

> bacteria used the compound to spread even more. They went from

inside

> to now an ugly infection outside the port area. FINALLY....they

> relented and took the port out and put another one in my upper arm

to

> finish the treatment which took another three + weeks. If they had

> taken the port out which was @ my chest about six inches from the

> heart) right away I think I could have gotten better faster.

>

> Don't you just love the blanket statements that doctor's make based

> upon generalized info. During my MRSA infection I saw a lyme doctor

> Stein in Dallas who told me that I didn't need any lyme treatment

> anyway because Vancomyacin was a Lyme antibiotic. Now this was

> without regard to any resistance I may have built up, or whether or

> not I would be having that treatment much longer, etc. It is those

> statements that tell a patient, " this doctor is just throwing

> anything at you looking for an excuse to get rid of you. " No amount

> of tea in china was going to reason with her. What was her advise

to

> me? " That I should do a wide search in google to try and find a

> doctor..... " .(Where has she been, under a rock??)

> I laughed and told her, " That is how I found you. "

>

> Jill, I'm with you.....I don't care how long it takes. I always

take

> a book and then wind up falling asleep within a few minutes. I was

> almost sure it was the infusion rate, because when I insisted they

> turn it down, the symptoms went down, but then I drifted off and

they

> pumped up the volume again. Then the second time they simply

refused

> to do it slow, instead giving me injections of steriods and bendryl

> until I was drunk. That was their solution. So I'm off to a new

place

> and I'll be really firm now that I've gotten more confidence after

> hearing the advice here. Thanks Penny for the confirmation, I

needed

> that.

>

> Don't you wonder if the business of medicine will ever get it.....?

> That everyone is different and we are not molecules and test tubes.

>

> They simply fail to compute the human variable.

>

> If there was one thing I could give every patient worldwide it

would

> be a never failing sense of what their own body is telling them and

> to let NO ONE talk them out of what their gut says.

>

> p.s. forgive me for screwing up the spelling on vancomycin, I'm

tired.

>

>

>

> > >

> > >

> > > 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

[Guest guest]

I agree. We have to realize that compassionate, concerned medical

health people are the exception, no longer the norm, and disregard

the hordes of worker bees who are just doing it for their pay check.

Not that it's an easy job to begin with, but the system is

inherently flawed. Trying to rail against a flawed system is a waste

of energy. Best to wait until you get well when you can really do

something about it. That's my plan. In the meantime, keep your eye

on the prize, and don't let anything stand in your way.

penny

> >

> >

> >

>> > I have just a quick question and will continue. Does anyone

else

> here

> > feel that they have to " motivate " medical people to want to

treat

> > them?