Re: Recent experience with IVIG infusions--An important Reply To Peg

September 7, 2005

Hello Peg,

I recieved your e-mail back-channel on Tuesday( sent on Friday), as I

was hosting company for the last two weeks---and did not attend to

my " computer needs " ......Anyway

I'm quite familiar with IVIG, both through my own personal usage ( I

am panhypogammaglobulinemia--which means " ALL " my antibody classes

are low, not just IgG )and through working with the product(PharmD)

Your posting below is lenghty---so I am going to omit some of the

conversation--and zero in an areas of which I may lend assistance:

> I expressed

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

> brainstem,

On a professional level.....I have never heard this theory, but it is

well-known that borrelia can cause white matter hyperintensities, as

well as several other infectious agents that one with immune

supression could have come in contact with ( Brucella,mycoplasmas,

ect--Tony would be the better poster to answer that particiliar

question---as microbiology isn't my speciality)

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

> acitivty level at home increased.

Not uncommon from someone with a depressed immune response. Does the

IVIG help your pain levels???? Because in those TBD sufferers that

deal with chronic perpherial neuropathies ( as I do) if has been

known to be a great help ( search Perpherial neuropathies and IVIG on

google scholar)

>

> 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

As you well know, I am aware of who you are seeing in Houston ( ID

Doctor) and it sounds like you were seeing Gailen Marshall as your

immunilogist--his move to Alabama has been a " pain in the arse " for

all who have had to seek other assistance for their treatments.(He is

going to be at the Instuite in Alabama) He is not a

LLMD of any sort--so it is just fine to post his name here.

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.

Now, I am not a fan of ole Joe the ID Doc.,( we are not talking

about the famous Dr. B--just for future reference) but I'm suprised

about this one---can I suggest an alternative reason why this might

be happening???

I don't know who your insurance carrier is, but many of them have pre-

set levels that the patient must be at to even be considered for IVIG

( as it is about 6K for 30 grams) so ole Doc Joe may be waiting for

your levels to drop down into your insurers' qualifications--and when

they do--most doctors will treat with gamma if the need is there, and

if they are able to--as it is quite the money maker for them ( that

is not an insinuation, nor sarcasam--it's just the way that it

is....they did go thru 12+ yrs of schooling, you would have to expect

them to want to make some sort of money for all that education)

Just another angle on what could be happening with that scenerio--as

Capitiolism rules everything in the USA.

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.

Are they still using 25 grams, for three consecutive days??? ( total

of 75 grams over a 72 hour period) That used to be the favorite

protocal. A 25 gram bag will be just that--one bag---are they running

fluids into you at the same time??? One bag could have been fluids,

the other the IVIG ( fluids would run first, or possibly at the same

time)

I

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

That about the norm for dosages from 20-40 grams--three hours for

most folks--but if you have any of the following reactions--the

infusion rate is to be slowed by 1/2--or stopped till the reaction

subsides:

Back Ache

Headache( this is even if you are being pre-medicated with benadyl,

and motrin--as if you are not---anyone can be in for one hum-dinger

of a headache)

Chills

Fever

Hypotension( systolic<100 diastolic<65)

,

> About thirty minutes into the process I

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

> stop.

IVIG is known to cause that under normal conditions--and the benadryl-

-even if you handle it well---causes yawning.

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

They should have stopped the infusion and contacted the doctor( jack-

arses) as this is a reaction--who was the attending RN at that

clinic?? And where were they??

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.

Maybe you are tolerant of PO form of benadryl--but they main-lined

you with the substance( placed it right into the IV line)---and that

will stop the reaction--and knock a walrus out--but if you were

having the reaction that you described above/below--they really had

no choice in the matter.

I believe it

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

> contracting and jerking

That's called a very strong reaction--!!

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.

Word to the wise....find another infusion center, or ask for home

health care. It doesn't sound as though this center is very

consienence of their patients' needs.

((Although I must say one other thing while on this topic of infusion

timing....some insurance carriers will not pay for nursing, ect. for

over three hours time with ANY IVIG infusion--if you need to go

longer--the doctors' office may need to provide them with some sort

of documentation to back-up the additional nursing charges--although

a documented bad reaction should definatly do the " trick " ))

Here's an example of how a three hour, 30 gram infusion should be ran:

50ml/hr for the 1st 30 minutes, then 100ml/hr for the next 30 min.,

then 200 ml/hr for the remainder of the infusion

This is an average infusion--any problems with the infusion, and the

rates should be lowered.

I don't know what product you are on--But your IgA was low normal (

not too bad, really) but if it was Panglobulin--which contains 720 mg

IgA---you could be having a hard time with the infusion because of

that fact--as well as the fact that it contains quite a bit of

sucrose.....hard on the ole' renals in the long run.

Some products are 5% solution, some are 10% solution--and the 10% one

would probaly help with your falling IgG rates by month end--but are

more viscous--and can cause more thrombotic episodes( like

phelbitises) so you have to weight the pros and the cons.

Most IG products have a half-life of 21-28 days--so you IgG could

start to tank by months' end

Consider trying Octagam ( by Octapharma--out of Austria) which has a

half-life of 40 days. May help keep your levels up for longer.

>

Alot 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.

Most IVIG is pretty safe from the infectious disease stand point--

there has not been a recall in over 15 yrs in the USA---20 yrs with

the Octagam in Germany--much better recall record than your average

american automobile!!!

Look at it this way: Yes, there is always the possiabilty of

something new getting into the blood supply----but with a suppressed

immune response--you may contact these pathogens anyway...on the

streets of the city!!!

Most infectious disease doctors use IVIG all the time---his AIDS

patients use the product often( if in need) so I would have to guess

that he is getting flack from the insurance companies ( as far as not

wanting to order the IVIG for you) I don't believe that it's anything

to do with those of us who have Lyme being excluded ( as I know that

he no longer takes any new lyme patients---so it would not take much

to wonder if he was trying to " move along " his borrelia patients sent

in by Harvey )but I really don't think that is the case with regard

to the IVIG situation.

Let it be known that I went to this doctor for a short time while

living in Texas.....and was intially impressed--but like yourself(

and many others)I, too--had one nightmare after another.....and I

finally left the practice--so I know what you are going though.

That's why I had to stick my head up tonight......and offer up what

asssistance that I can

Take Care, Peg, and back-channel me when you can!!!!!

Best,

Celiene

>

September 7, 2005

BTW, I agree about the 10% solution, thats what gammagard is, and its

definitely more viscous, however you can help that by getting IV

saline, or IV/minerals/vitamins in saline ahead of time. Increase

your blood volume and it is in effect diluting the solution to some

extent.

> Hello Peg,

>

> I recieved your e-mail back-channel on Tuesday( sent on Friday), as

I

> was hosting company for the last two weeks---and did not attend to

> my " computer needs " ......Anyway

>

> I'm quite familiar with IVIG, both through my own personal usage (

I

> am panhypogammaglobulinemia--which means " ALL " my antibody classes

> are low, not just IgG )and through working with the product(PharmD)

>

> Your posting below is lenghty---so I am going to omit some of the

> conversation--and zero in an areas of which I may lend assistance:

>

> > I expressed

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

> > brainstem,

>

> On a professional level.....I have never heard this theory, but it

is

> well-known that borrelia can cause white matter hyperintensities,

as

> well as several other infectious agents that one with immune

> supression could have come in contact with ( Brucella,mycoplasmas,

> ect--Tony would be the better poster to answer that particiliar

> question---as microbiology isn't my speciality)

>

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

> > acitivty level at home increased.

>

> Not uncommon from someone with a depressed immune response. Does

the

> IVIG help your pain levels???? Because in those TBD sufferers that

> deal with chronic perpherial neuropathies ( as I do) if has been

> known to be a great help ( search Perpherial neuropathies and IVIG

on

> google scholar)

> >

> > 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

>

> As you well know, I am aware of who you are seeing in Houston ( ID

> Doctor) and it sounds like you were seeing Gailen Marshall as your

> immunilogist--his move to Alabama has been a " pain in the arse " for

> all who have had to seek other assistance for their treatments.(He

is

> going to be at the Instuite in Alabama) He is not a

> LLMD of any sort--so it is just fine to post his name here.

>

> 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.

>

> Now, I am not a fan of ole Joe the ID Doc.,( we are not talking

> about the famous Dr. B--just for future reference) but I'm suprised

> about this one---can I suggest an alternative reason why this might

> be happening???

>

> I don't know who your insurance carrier is, but many of them have

pre-

> set levels that the patient must be at to even be considered for

IVIG

> ( as it is about 6K for 30 grams) so ole Doc Joe may be waiting for

> your levels to drop down into your insurers' qualifications--and

when

> they do--most doctors will treat with gamma if the need is there,

and

> if they are able to--as it is quite the money maker for them ( that

> is not an insinuation, nor sarcasam--it's just the way that it

> is....they did go thru 12+ yrs of schooling, you would have to

expect

> them to want to make some sort of money for all that education)

>

> Just another angle on what could be happening with that scenerio--

as

> Capitiolism rules everything in the USA.

>

> 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.

>

> Are they still using 25 grams, for three consecutive days??? (

total

> of 75 grams over a 72 hour period) That used to be the favorite

> protocal. A 25 gram bag will be just that--one bag---are they

running

> fluids into you at the same time??? One bag could have been fluids,

> the other the IVIG ( fluids would run first, or possibly at the

same

> time)

>

> I

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

>

> That about the norm for dosages from 20-40 grams--three hours for

> most folks--but if you have any of the following reactions--the

> infusion rate is to be slowed by 1/2--or stopped till the reaction

> subsides:

>

> Back Ache

>

> Headache( this is even if you are being pre-medicated with benadyl,

> and motrin--as if you are not---anyone can be in for one hum-dinger

> of a headache)

>

> Chills

>

> Fever

>

> Hypotension( systolic<100 diastolic<65)

>

> ,

> > About thirty minutes into the process I

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

> > stop.

>

> IVIG is known to cause that under normal conditions--and the

benadryl-

> -even if you handle it well---causes yawning.

>

> 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

>

> They should have stopped the infusion and contacted the doctor(

jack-

> arses) as this is a reaction--who was the attending RN at that

> clinic?? And where were they??

>

> 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.

>

> Maybe you are tolerant of PO form of benadryl--but they main-lined

> you with the substance( placed it right into the IV line)---and

that

> will stop the reaction--and knock a walrus out--but if you were

> having the reaction that you described above/below--they really had

> no choice in the matter.

>

> I believe it

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

were

> > contracting and jerking

>

> That's called a very strong reaction--!!

>

> 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.

>

> Word to the wise....find another infusion center, or ask for home

> health care. It doesn't sound as though this center is very

> consienence of their patients' needs.

>

> ((Although I must say one other thing while on this topic of

infusion

> timing....some insurance carriers will not pay for nursing, ect.

for

> over three hours time with ANY IVIG infusion--if you need to go

> longer--the doctors' office may need to provide them with some sort

> of documentation to back-up the additional nursing charges--

although

> a documented bad reaction should definatly do the " trick " ))

>

> Here's an example of how a three hour, 30 gram infusion should be

ran:

>

> 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next 30 min.,

> then 200 ml/hr for the remainder of the infusion

>

> This is an average infusion--any problems with the infusion, and

the

> rates should be lowered.

>

> I don't know what product you are on--But your IgA was low normal (

> not too bad, really) but if it was Panglobulin--which contains 720

mg

> IgA---you could be having a hard time with the infusion because of

> that fact--as well as the fact that it contains quite a bit of

> sucrose.....hard on the ole' renals in the long run.

>

> Some products are 5% solution, some are 10% solution--and the 10%

one

> would probaly help with your falling IgG rates by month end--but

are

> more viscous--and can cause more thrombotic episodes( like

> phelbitises) so you have to weight the pros and the cons.

>

> Most IG products have a half-life of 21-28 days--so you IgG could

> start to tank by months' end

>

> Consider trying Octagam ( by Octapharma--out of Austria) which has

a

> half-life of 40 days. May help keep your levels up for longer.

>

> >

> Alot 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.

>

> Most IVIG is pretty safe from the infectious disease stand point--

> there has not been a recall in over 15 yrs in the USA---20 yrs with

> the Octagam in Germany--much better recall record than your average

> american automobile!!!

>

> Look at it this way: Yes, there is always the possiabilty of

> something new getting into the blood supply----but with a

suppressed

> immune response--you may contact these pathogens anyway...on the

> streets of the city!!!

>

> Most infectious disease doctors use IVIG all the time---his AIDS

> patients use the product often( if in need) so I would have to

guess

> that he is getting flack from the insurance companies ( as far as

not

> wanting to order the IVIG for you) I don't believe that it's

anything

> to do with those of us who have Lyme being excluded ( as I know

that

> he no longer takes any new lyme patients---so it would not take

much

> to wonder if he was trying to " move along " his borrelia patients

sent

> in by Harvey )but I really don't think that is the case with regard

> to the IVIG situation.

>

> Let it be known that I went to this doctor for a short time while

> living in Texas.....and was intially impressed--but like yourself(

> and many others)I, too--had one nightmare after another.....and I

> finally left the practice--so I know what you are going though.

>

> That's why I had to stick my head up tonight......and offer up what

> asssistance that I can

>

> Take Care, Peg, and back-channel me when you can!!!!!

>

> Best,

> Celiene

>

> >

September 7, 2005

Jill

Go check out lanelle- red blood cells -under photos on this page. I

sent my slides to tarello so he can point out the bad dudes. As you

can see no babesia to worry about.

> > Hello Peg,

> >

> > I recieved your e-mail back-channel on Tuesday( sent on Friday),

as

> I

> > was hosting company for the last two weeks---and did not attend

to

> > my " computer needs " ......Anyway

> >

> > I'm quite familiar with IVIG, both through my own personal usage

(

> I

> > am panhypogammaglobulinemia--which means " ALL " my antibody

classes

> > are low, not just IgG )and through working with the product

(PharmD)

> >

> > Your posting below is lenghty---so I am going to omit some of

the

> > conversation--and zero in an areas of which I may lend

assistance:

> >

> > > I expressed

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

> > > brainstem,

> >

> > On a professional level.....I have never heard this theory, but

it

> is

> > well-known that borrelia can cause white matter

hyperintensities,

> as

> > well as several other infectious agents that one with immune

> > supression could have come in contact with (

Brucella,mycoplasmas,

> > ect--Tony would be the better poster to answer that particiliar

> > question---as microbiology isn't my speciality)

> >

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

> > > acitivty level at home increased.

> >

> > Not uncommon from someone with a depressed immune response. Does

> the

> > IVIG help your pain levels???? Because in those TBD sufferers

that

> > deal with chronic perpherial neuropathies ( as I do) if has been

> > known to be a great help ( search Perpherial neuropathies and

IVIG

> on

> > google scholar)

> > >

> > > 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

> >

> > As you well know, I am aware of who you are seeing in Houston (

ID

> > Doctor) and it sounds like you were seeing Gailen Marshall as

your

> > immunilogist--his move to Alabama has been a " pain in the arse "

for

> > all who have had to seek other assistance for their treatments.

(He

> is

> > going to be at the Instuite in Alabama) He is not

a

> > LLMD of any sort--so it is just fine to post his name here.

> >

> > 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.

> >

> > Now, I am not a fan of ole Joe the ID Doc.,( we are not talking

> > about the famous Dr. B--just for future reference) but I'm

suprised

> > about this one---can I suggest an alternative reason why this

might

> > be happening???

> >

> > I don't know who your insurance carrier is, but many of them

have

> pre-

> > set levels that the patient must be at to even be considered for

> IVIG

> > ( as it is about 6K for 30 grams) so ole Doc Joe may be waiting

for

> > your levels to drop down into your insurers' qualifications--and

> when

> > they do--most doctors will treat with gamma if the need is

there,

> and

> > if they are able to--as it is quite the money maker for them (

that

> > is not an insinuation, nor sarcasam--it's just the way that it

> > is....they did go thru 12+ yrs of schooling, you would have to

> expect

> > them to want to make some sort of money for all that education)

> >

> > Just another angle on what could be happening with that scenerio-

-

> as

> > Capitiolism rules everything in the USA.

> >

> > 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.

> >

> > Are they still using 25 grams, for three consecutive days??? (

> total

> > of 75 grams over a 72 hour period) That used to be the favorite

> > protocal. A 25 gram bag will be just that--one bag---are they

> running

> > fluids into you at the same time??? One bag could have been

fluids,

> > the other the IVIG ( fluids would run first, or possibly at the

> same

> > time)

> >

> > I

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

hours.

> >

> > That about the norm for dosages from 20-40 grams--three hours

for

> > most folks--but if you have any of the following reactions--the

> > infusion rate is to be slowed by 1/2--or stopped till the

reaction

> > subsides:

> >

> > Back Ache

> >

> > Headache( this is even if you are being pre-medicated with

benadyl,

> > and motrin--as if you are not---anyone can be in for one hum-

dinger

> > of a headache)

> >

> > Chills

> >

> > Fever

> >

> > Hypotension( systolic<100 diastolic<65)

> >

> > ,

> > > About thirty minutes into the process I

> > > started yawning, really big and really dramatically. I

couldn't

> > > stop.

> >

> > IVIG is known to cause that under normal conditions--and the

> benadryl-

> > -even if you handle it well---causes yawning.

> >

> > 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

> >

> > They should have stopped the infusion and contacted the doctor(

> jack-

> > arses) as this is a reaction--who was the attending RN at that

> > clinic?? And where were they??

> >

> > 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.

> >

> > Maybe you are tolerant of PO form of benadryl--but they main-

lined

> > you with the substance( placed it right into the IV line)---and

> that

> > will stop the reaction--and knock a walrus out--but if you were

> > having the reaction that you described above/below--they really

had

> > no choice in the matter.

> >

> > I believe it

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

> were

> > > contracting and jerking

> >

> > That's called a very strong reaction--!!

> >

> > 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.

> >

> > Word to the wise....find another infusion center, or ask for

home

> > health care. It doesn't sound as though this center is very

> > consienence of their patients' needs.

> >

> > ((Although I must say one other thing while on this topic of

> infusion

> > timing....some insurance carriers will not pay for nursing, ect.

> for

> > over three hours time with ANY IVIG infusion--if you need to go

> > longer--the doctors' office may need to provide them with some

sort

> > of documentation to back-up the additional nursing charges--

> although

> > a documented bad reaction should definatly do the " trick " ))

> >

> > Here's an example of how a three hour, 30 gram infusion should

be

> ran:

> >

> > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next 30

min.,

> > then 200 ml/hr for the remainder of the infusion

> >

> > This is an average infusion--any problems with the infusion, and

> the

> > rates should be lowered.

> >

> > I don't know what product you are on--But your IgA was low

normal (

> > not too bad, really) but if it was Panglobulin--which contains

720

> mg

> > IgA---you could be having a hard time with the infusion because

of

> > that fact--as well as the fact that it contains quite a bit of

> > sucrose.....hard on the ole' renals in the long run.

> >

> > Some products are 5% solution, some are 10% solution--and the

10%

> one

> > would probaly help with your falling IgG rates by month end--but

> are

> > more viscous--and can cause more thrombotic episodes( like

> > phelbitises) so you have to weight the pros and the cons.

> >

> > Most IG products have a half-life of 21-28 days--so you IgG

could

> > start to tank by months' end

> >

> > Consider trying Octagam ( by Octapharma--out of Austria) which

has

> a

> > half-life of 40 days. May help keep your levels up for longer.

> >

> > >

> > Alot 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.

> >

> > Most IVIG is pretty safe from the infectious disease stand point-

-

> > there has not been a recall in over 15 yrs in the USA---20 yrs

with

> > the Octagam in Germany--much better recall record than your

average

> > american automobile!!!

> >

> > Look at it this way: Yes, there is always the possiabilty of

> > something new getting into the blood supply----but with a

> suppressed

> > immune response--you may contact these pathogens anyway...on the

> > streets of the city!!!

> >

> > Most infectious disease doctors use IVIG all the time---his AIDS

> > patients use the product often( if in need) so I would have to

> guess

> > that he is getting flack from the insurance companies ( as far

as

> not

> > wanting to order the IVIG for you) I don't believe that it's

> anything

> > to do with those of us who have Lyme being excluded ( as I know

> that

> > he no longer takes any new lyme patients---so it would not take

> much

> > to wonder if he was trying to " move along " his borrelia patients

> sent

> > in by Harvey )but I really don't think that is the case with

regard

> > to the IVIG situation.

> >

> > Let it be known that I went to this doctor for a short time

while

> > living in Texas.....and was intially impressed--but like yourself

(

> > and many others)I, too--had one nightmare after another.....and

I

> > finally left the practice--so I know what you are going though.

> >

> > That's why I had to stick my head up tonight......and offer up

what

> > asssistance that I can

> >

> > Take Care, Peg, and back-channel me when you can!!!!!

> >

> > Best,

> > Celiene

> >

> > >

September 7, 2005

Tony, I'm confused. WHat is lanelle photos--on which page? Thanx...

> > > Hello Peg,

> > >

> > > I recieved your e-mail back-channel on Tuesday( sent on

Friday),

> as

> > I

> > > was hosting company for the last two weeks---and did not attend

> to

> > > my " computer needs " ......Anyway

> > >

> > > I'm quite familiar with IVIG, both through my own personal

usage

> (

> > I

> > > am panhypogammaglobulinemia--which means " ALL " my antibody

> classes

> > > are low, not just IgG )and through working with the product

> (PharmD)

> > >

> > > Your posting below is lenghty---so I am going to omit some of

> the

> > > conversation--and zero in an areas of which I may lend

> assistance:

> > >

> > > > I expressed

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

> > > > brainstem,

> > >

> > > On a professional level.....I have never heard this theory, but

> it

> > is

> > > well-known that borrelia can cause white matter

> hyperintensities,

> > as

> > > well as several other infectious agents that one with immune

> > > supression could have come in contact with (

> Brucella,mycoplasmas,

> > > ect--Tony would be the better poster to answer that particiliar

> > > question---as microbiology isn't my speciality)

> > >

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

> > > > acitivty level at home increased.

> > >

> > > Not uncommon from someone with a depressed immune response.

Does

> > the

> > > IVIG help your pain levels???? Because in those TBD sufferers

> that

> > > deal with chronic perpherial neuropathies ( as I do) if has

been

> > > known to be a great help ( search Perpherial neuropathies and

> IVIG

> > on

> > > google scholar)

> > > >

> > > > 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

> > >

> > > As you well know, I am aware of who you are seeing in Houston (

> ID

> > > Doctor) and it sounds like you were seeing Gailen Marshall as

> your

> > > immunilogist--his move to Alabama has been a " pain in the arse "

> for

> > > all who have had to seek other assistance for their treatments.

> (He

> > is

> > > going to be at the Instuite in Alabama) He is not

> a

> > > LLMD of any sort--so it is just fine to post his name here.

> > >

> > > 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.

> > >

> > > Now, I am not a fan of ole Joe the ID Doc.,( we are not

talking

> > > about the famous Dr. B--just for future reference) but I'm

> suprised

> > > about this one---can I suggest an alternative reason why this

> might

> > > be happening???

> > >

> > > I don't know who your insurance carrier is, but many of them

> have

> > pre-

> > > set levels that the patient must be at to even be considered

for

> > IVIG

> > > ( as it is about 6K for 30 grams) so ole Doc Joe may be waiting

> for

> > > your levels to drop down into your insurers' qualifications--

and

> > when

> > > they do--most doctors will treat with gamma if the need is

> there,

> > and

> > > if they are able to--as it is quite the money maker for them (

> that

> > > is not an insinuation, nor sarcasam--it's just the way that it

> > > is....they did go thru 12+ yrs of schooling, you would have to

> > expect

> > > them to want to make some sort of money for all that education)

> > >

> > > Just another angle on what could be happening with that

scenerio-

> -

> > as

> > > Capitiolism rules everything in the USA.

> > >

> > > 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.

> > >

> > > Are they still using 25 grams, for three consecutive days??? (

> > total

> > > of 75 grams over a 72 hour period) That used to be the favorite

> > > protocal. A 25 gram bag will be just that--one bag---are they

> > running

> > > fluids into you at the same time??? One bag could have been

> fluids,

> > > the other the IVIG ( fluids would run first, or possibly at the

> > same

> > > time)

> > >

> > > I

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

> hours.

> > >

> > > That about the norm for dosages from 20-40 grams--three hours

> for

> > > most folks--but if you have any of the following reactions--the

> > > infusion rate is to be slowed by 1/2--or stopped till the

> reaction

> > > subsides:

> > >

> > > Back Ache

> > >

> > > Headache( this is even if you are being pre-medicated with

> benadyl,

> > > and motrin--as if you are not---anyone can be in for one hum-

> dinger

> > > of a headache)

> > >

> > > Chills

> > >

> > > Fever

> > >

> > > Hypotension( systolic<100 diastolic<65)

> > >

> > > ,

> > > > About thirty minutes into the process I

> > > > started yawning, really big and really dramatically. I

> couldn't

> > > > stop.

> > >

> > > IVIG is known to cause that under normal conditions--and the

> > benadryl-

> > > -even if you handle it well---causes yawning.

> > >

> > > 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

> > >

> > > They should have stopped the infusion and contacted the doctor(

> > jack-

> > > arses) as this is a reaction--who was the attending RN at that

> > > clinic?? And where were they??

> > >

> > > 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.

> > >

> > > Maybe you are tolerant of PO form of benadryl--but they main-

> lined

> > > you with the substance( placed it right into the IV line)---and

> > that

> > > will stop the reaction--and knock a walrus out--but if you were

> > > having the reaction that you described above/below--they really

> had

> > > no choice in the matter.

> > >

> > > I believe it

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

> > were

> > > > contracting and jerking

> > >

> > > That's called a very strong reaction--!!

> > >

> > > 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.

> > >

> > > Word to the wise....find another infusion center, or ask for

> home

> > > health care. It doesn't sound as though this center is very

> > > consienence of their patients' needs.

> > >

> > > ((Although I must say one other thing while on this topic of

> > infusion

> > > timing....some insurance carriers will not pay for nursing,

ect.

> > for

> > > over three hours time with ANY IVIG infusion--if you need to go

> > > longer--the doctors' office may need to provide them with some

> sort

> > > of documentation to back-up the additional nursing charges--

> > although

> > > a documented bad reaction should definatly do the " trick " ))

> > >

> > > Here's an example of how a three hour, 30 gram infusion should

> be

> > ran:

> > >

> > > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next 30

> min.,

> > > then 200 ml/hr for the remainder of the infusion

> > >

> > > This is an average infusion--any problems with the infusion,

and

> > the

> > > rates should be lowered.

> > >

> > > I don't know what product you are on--But your IgA was low

> normal (

> > > not too bad, really) but if it was Panglobulin--which contains

> 720

> > mg

> > > IgA---you could be having a hard time with the infusion because

> of

> > > that fact--as well as the fact that it contains quite a bit of

> > > sucrose.....hard on the ole' renals in the long run.

> > >

> > > Some products are 5% solution, some are 10% solution--and the

> 10%

> > one

> > > would probaly help with your falling IgG rates by month end--

but

> > are

> > > more viscous--and can cause more thrombotic episodes( like

> > > phelbitises) so you have to weight the pros and the cons.

> > >

> > > Most IG products have a half-life of 21-28 days--so you IgG

> could

> > > start to tank by months' end

> > >

> > > Consider trying Octagam ( by Octapharma--out of Austria) which

> has

> > a

> > > half-life of 40 days. May help keep your levels up for longer.

> > >

> > > >

> > > Alot 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.

> > >

> > > Most IVIG is pretty safe from the infectious disease stand

point-

> -

> > > there has not been a recall in over 15 yrs in the USA---20 yrs

> with

> > > the Octagam in Germany--much better recall record than your

> average

> > > american automobile!!!

> > >

> > > Look at it this way: Yes, there is always the possiabilty of

> > > something new getting into the blood supply----but with a

> > suppressed

> > > immune response--you may contact these pathogens anyway...on

the

> > > streets of the city!!!

> > >

> > > Most infectious disease doctors use IVIG all the time---his

AIDS

> > > patients use the product often( if in need) so I would have to

> > guess

> > > that he is getting flack from the insurance companies ( as far

> as

> > not

> > > wanting to order the IVIG for you) I don't believe that it's

> > anything

> > > to do with those of us who have Lyme being excluded ( as I know

> > that

> > > he no longer takes any new lyme patients---so it would not take

> > much

> > > to wonder if he was trying to " move along " his borrelia

patients

> > sent

> > > in by Harvey )but I really don't think that is the case with

> regard

> > > to the IVIG situation.

> > >

> > > Let it be known that I went to this doctor for a short time

> while

> > > living in Texas.....and was intially impressed--but like

yourself

> (

> > > and many others)I, too--had one nightmare after another.....and

> I

> > > finally left the practice--so I know what you are going though.

> > >

> > > That's why I had to stick my head up tonight......and offer up

> what

> > > asssistance that I can

> > >

> > > Take Care, Peg, and back-channel me when you can!!!!!

> > >

> > > Best,

> > > Celiene

> > >

> > > >

September 7, 2005

Without seeing the slide myself - Are those with the dark sopt in

them Howel Jolly bodies... they've been docymented in my blood

(asplenia)

Definition:Howel Jolly bodies : They are small (1-3 µm),spherical

remnents of nuclear material. They are purple-blue in colour and

present mostly single but sometimes multiple. It is seen in

megaloblastic anemia, hemolytic anemia, sickle cell disorders,

thalassaemia, erythroblastosis fetalis & in post splenec-

tomy/hyposplenism patients.

See PIC HERE:

http://www.kalpesh.itgo.com/PS10.htm#Howel%20Jolly%20bodies

> > > Hello Peg,

> > >

> > > I recieved your e-mail back-channel on Tuesday( sent on

Friday),

> as

> > I

> > > was hosting company for the last two weeks---and did not attend

> to

> > > my " computer needs " ......Anyway

> > >

> > > I'm quite familiar with IVIG, both through my own personal

usage

> (

> > I

> > > am panhypogammaglobulinemia--which means " ALL " my antibody

> classes

> > > are low, not just IgG )and through working with the product

> (PharmD)

> > >

> > > Your posting below is lenghty---so I am going to omit some of

> the

> > > conversation--and zero in an areas of which I may lend

> assistance:

> > >

> > > > I expressed

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

> > > > brainstem,

> > >

> > > On a professional level.....I have never heard this theory, but

> it

> > is

> > > well-known that borrelia can cause white matter

> hyperintensities,

> > as

> > > well as several other infectious agents that one with immune

> > > supression could have come in contact with (

> Brucella,mycoplasmas,

> > > ect--Tony would be the better poster to answer that particiliar

> > > question---as microbiology isn't my speciality)

> > >

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

> > > > acitivty level at home increased.

> > >

> > > Not uncommon from someone with a depressed immune response.

Does

> > the

> > > IVIG help your pain levels???? Because in those TBD sufferers

> that

> > > deal with chronic perpherial neuropathies ( as I do) if has

been

> > > known to be a great help ( search Perpherial neuropathies and

> IVIG

> > on

> > > google scholar)

> > > >

> > > > 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

> > >

> > > As you well know, I am aware of who you are seeing in Houston (

> ID

> > > Doctor) and it sounds like you were seeing Gailen Marshall as

> your

> > > immunilogist--his move to Alabama has been a " pain in the arse "

> for

> > > all who have had to seek other assistance for their treatments.

> (He

> > is

> > > going to be at the Instuite in Alabama) He is not

> a

> > > LLMD of any sort--so it is just fine to post his name here.

> > >

> > > 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.

> > >

> > > Now, I am not a fan of ole Joe the ID Doc.,( we are not

talking

> > > about the famous Dr. B--just for future reference) but I'm

> suprised

> > > about this one---can I suggest an alternative reason why this

> might

> > > be happening???

> > >

> > > I don't know who your insurance carrier is, but many of them

> have

> > pre-

> > > set levels that the patient must be at to even be considered

for

> > IVIG

> > > ( as it is about 6K for 30 grams) so ole Doc Joe may be waiting

> for

> > > your levels to drop down into your insurers' qualifications--

and

> > when

> > > they do--most doctors will treat with gamma if the need is

> there,

> > and

> > > if they are able to--as it is quite the money maker for them (

> that

> > > is not an insinuation, nor sarcasam--it's just the way that it

> > > is....they did go thru 12+ yrs of schooling, you would have to

> > expect

> > > them to want to make some sort of money for all that education)

> > >

> > > Just another angle on what could be happening with that

scenerio-

> -

> > as

> > > Capitiolism rules everything in the USA.

> > >

> > > 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.

> > >

> > > Are they still using 25 grams, for three consecutive days??? (

> > total

> > > of 75 grams over a 72 hour period) That used to be the favorite

> > > protocal. A 25 gram bag will be just that--one bag---are they

> > running

> > > fluids into you at the same time??? One bag could have been

> fluids,

> > > the other the IVIG ( fluids would run first, or possibly at the

> > same

> > > time)

> > >

> > > I

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

> hours.

> > >

> > > That about the norm for dosages from 20-40 grams--three hours

> for

> > > most folks--but if you have any of the following reactions--the

> > > infusion rate is to be slowed by 1/2--or stopped till the

> reaction

> > > subsides:

> > >

> > > Back Ache

> > >

> > > Headache( this is even if you are being pre-medicated with

> benadyl,

> > > and motrin--as if you are not---anyone can be in for one hum-

> dinger

> > > of a headache)

> > >

> > > Chills

> > >

> > > Fever

> > >

> > > Hypotension( systolic<100 diastolic<65)

> > >

> > > ,

> > > > About thirty minutes into the process I

> > > > started yawning, really big and really dramatically. I

> couldn't

> > > > stop.

> > >

> > > IVIG is known to cause that under normal conditions--and the

> > benadryl-

> > > -even if you handle it well---causes yawning.

> > >

> > > 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

> > >

> > > They should have stopped the infusion and contacted the doctor(

> > jack-

> > > arses) as this is a reaction--who was the attending RN at that

> > > clinic?? And where were they??

> > >

> > > 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.

> > >

> > > Maybe you are tolerant of PO form of benadryl--but they main-

> lined

> > > you with the substance( placed it right into the IV line)---and

> > that

> > > will stop the reaction--and knock a walrus out--but if you were

> > > having the reaction that you described above/below--they really

> had

> > > no choice in the matter.

> > >

> > > I believe it

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

> > were

> > > > contracting and jerking

> > >

> > > That's called a very strong reaction--!!

> > >

> > > 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.

> > >

> > > Word to the wise....find another infusion center, or ask for

> home

> > > health care. It doesn't sound as though this center is very

> > > consienence of their patients' needs.

> > >

> > > ((Although I must say one other thing while on this topic of

> > infusion

> > > timing....some insurance carriers will not pay for nursing,

ect.

> > for

> > > over three hours time with ANY IVIG infusion--if you need to go

> > > longer--the doctors' office may need to provide them with some

> sort

> > > of documentation to back-up the additional nursing charges--

> > although

> > > a documented bad reaction should definatly do the " trick " ))

> > >

> > > Here's an example of how a three hour, 30 gram infusion should

> be

> > ran:

> > >

> > > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next 30

> min.,

> > > then 200 ml/hr for the remainder of the infusion

> > >

> > > This is an average infusion--any problems with the infusion,

and

> > the

> > > rates should be lowered.

> > >

> > > I don't know what product you are on--But your IgA was low

> normal (

> > > not too bad, really) but if it was Panglobulin--which contains

> 720

> > mg

> > > IgA---you could be having a hard time with the infusion because

> of

> > > that fact--as well as the fact that it contains quite a bit of

> > > sucrose.....hard on the ole' renals in the long run.

> > >

> > > Some products are 5% solution, some are 10% solution--and the

> 10%

> > one

> > > would probaly help with your falling IgG rates by month end--

but

> > are

> > > more viscous--and can cause more thrombotic episodes( like

> > > phelbitises) so you have to weight the pros and the cons.

> > >

> > > Most IG products have a half-life of 21-28 days--so you IgG

> could

> > > start to tank by months' end

> > >

> > > Consider trying Octagam ( by Octapharma--out of Austria) which

> has

> > a

> > > half-life of 40 days. May help keep your levels up for longer.

> > >

> > > >

> > > Alot 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.

> > >

> > > Most IVIG is pretty safe from the infectious disease stand

point-

> -

> > > there has not been a recall in over 15 yrs in the USA---20 yrs

> with

> > > the Octagam in Germany--much better recall record than your

> average

> > > american automobile!!!

> > >

> > > Look at it this way: Yes, there is always the possiabilty of

> > > something new getting into the blood supply----but with a

> > suppressed

> > > immune response--you may contact these pathogens anyway...on

the

> > > streets of the city!!!

> > >

> > > Most infectious disease doctors use IVIG all the time---his

AIDS

> > > patients use the product often( if in need) so I would have to

> > guess

> > > that he is getting flack from the insurance companies ( as far

> as

> > not

> > > wanting to order the IVIG for you) I don't believe that it's

> > anything

> > > to do with those of us who have Lyme being excluded ( as I know

> > that

> > > he no longer takes any new lyme patients---so it would not take

> > much

> > > to wonder if he was trying to " move along " his borrelia

patients

> > sent

> > > in by Harvey )but I really don't think that is the case with

> regard

> > > to the IVIG situation.

> > >

> > > Let it be known that I went to this doctor for a short time

> while

> > > living in Texas.....and was intially impressed--but like

yourself

> (

> > > and many others)I, too--had one nightmare after another.....and

> I

> > > finally left the practice--so I know what you are going though.

> > >

> > > That's why I had to stick my head up tonight......and offer up

> what

> > > asssistance that I can

> > >

> > > Take Care, Peg, and back-channel me when you can!!!!!

> > >

> > > Best,

> > > Celiene

> > >

> > > >

September 7, 2005

Hello,

That may be what the second IV bag was for ( with regard to Pegs

story) but with incomplete right bundle branch blocks being

the " norm " for many borrelia/chronic infectious patients--you have to

be careful as to " how " you infuse that combo--with regard to the rate

of the infusion. ( IV Saline and 10% solutions)This does not require

being a rocket scientist--and any decent RN who is trainned in IVIG

should be able to figure out how to tritate this.

BTW, I prefer Gammuex to gammagard--with regards to maintaining

trough levels throughtout the month--just what I noticed thru

observation of other patients levels.

I find that Octagam( 5% OctaPharma, out of Austria, available in the

USA) works best for me personally. But everyone is different.

All IVIG helps with low blood volume( which is a nice side-effect for

most of us) But please be careful with IV vitamin/mineral solutions

used at the time of the IVIG---simply because many sufferers have

poor venous access ( if you do not have an in-dwelling cathater) and

the vitamin solutions( particiliarly vit C.,others) have been known

to cause inflammation at the venous access site--to such a point that

the vein loses it's " Patentcy "

You may not have any problems--which is great for you personally

Just a word of caution to others.

CELIENE

> > Hello Peg,

> >

> > I recieved your e-mail back-channel on Tuesday( sent on Friday),

as

> I

> > was hosting company for the last two weeks---and did not attend

to

> > my " computer needs " ......Anyway

> >

> > I'm quite familiar with IVIG, both through my own personal usage

(

> I

> > am panhypogammaglobulinemia--which means " ALL " my antibody

classes

> > are low, not just IgG )and through working with the product

(PharmD)

> >

> > Your posting below is lenghty---so I am going to omit some of the

> > conversation--and zero in an areas of which I may lend assistance:

> >

> > > I expressed

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

> > > brainstem,

> >

> > On a professional level.....I have never heard this theory, but

it

> is

> > well-known that borrelia can cause white matter hyperintensities,

> as

> > well as several other infectious agents that one with immune

> > supression could have come in contact with (

Brucella,mycoplasmas,

> > ect--Tony would be the better poster to answer that particiliar

> > question---as microbiology isn't my speciality)

> >

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

> > > acitivty level at home increased.

> >

> > Not uncommon from someone with a depressed immune response. Does

> the

> > IVIG help your pain levels???? Because in those TBD sufferers

that

> > deal with chronic perpherial neuropathies ( as I do) if has been

> > known to be a great help ( search Perpherial neuropathies and

IVIG

> on

> > google scholar)

> > >

> > > 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

> >

> > As you well know, I am aware of who you are seeing in Houston (

ID

> > Doctor) and it sounds like you were seeing Gailen Marshall as

your

> > immunilogist--his move to Alabama has been a " pain in the arse "

for

> > all who have had to seek other assistance for their treatments.

(He

> is

> > going to be at the Instuite in Alabama) He is not a

> > LLMD of any sort--so it is just fine to post his name here.

> >

> > 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.

> >

> > Now, I am not a fan of ole Joe the ID Doc.,( we are not talking

> > about the famous Dr. B--just for future reference) but I'm

suprised

> > about this one---can I suggest an alternative reason why this

might

> > be happening???

> >

> > I don't know who your insurance carrier is, but many of them have

> pre-

> > set levels that the patient must be at to even be considered for

> IVIG

> > ( as it is about 6K for 30 grams) so ole Doc Joe may be waiting

for

> > your levels to drop down into your insurers' qualifications--and

> when

> > they do--most doctors will treat with gamma if the need is there,

> and

> > if they are able to--as it is quite the money maker for them (

that

> > is not an insinuation, nor sarcasam--it's just the way that it

> > is....they did go thru 12+ yrs of schooling, you would have to

> expect

> > them to want to make some sort of money for all that education)

> >

> > Just another angle on what could be happening with that scenerio--

> as

> > Capitiolism rules everything in the USA.

> >

> > 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.

> >

> > Are they still using 25 grams, for three consecutive days??? (

> total

> > of 75 grams over a 72 hour period) That used to be the favorite

> > protocal. A 25 gram bag will be just that--one bag---are they

> running

> > fluids into you at the same time??? One bag could have been

fluids,

> > the other the IVIG ( fluids would run first, or possibly at the

> same

> > time)

> >

> > I

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

> >

> > That about the norm for dosages from 20-40 grams--three hours for

> > most folks--but if you have any of the following reactions--the

> > infusion rate is to be slowed by 1/2--or stopped till the

reaction

> > subsides:

> >

> > Back Ache

> >

> > Headache( this is even if you are being pre-medicated with

benadyl,

> > and motrin--as if you are not---anyone can be in for one hum-

dinger

> > of a headache)

> >

> > Chills

> >

> > Fever

> >

> > Hypotension( systolic<100 diastolic<65)

> >

> > ,

> > > About thirty minutes into the process I

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

> > > stop.

> >

> > IVIG is known to cause that under normal conditions--and the

> benadryl-

> > -even if you handle it well---causes yawning.

> >

> > 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

> >

> > They should have stopped the infusion and contacted the doctor(

> jack-

> > arses) as this is a reaction--who was the attending RN at that

> > clinic?? And where were they??

> >

> > 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.

> >

> > Maybe you are tolerant of PO form of benadryl--but they main-

lined

> > you with the substance( placed it right into the IV line)---and

> that

> > will stop the reaction--and knock a walrus out--but if you were

> > having the reaction that you described above/below--they really

had

> > no choice in the matter.

> >

> > I believe it

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

> were

> > > contracting and jerking

> >

> > That's called a very strong reaction--!!

> >

> > 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.

> >

> > Word to the wise....find another infusion center, or ask for home

> > health care. It doesn't sound as though this center is very

> > consienence of their patients' needs.

> >

> > ((Although I must say one other thing while on this topic of

> infusion

> > timing....some insurance carriers will not pay for nursing, ect.

> for

> > over three hours time with ANY IVIG infusion--if you need to go

> > longer--the doctors' office may need to provide them with some

sort

> > of documentation to back-up the additional nursing charges--

> although

> > a documented bad reaction should definatly do the " trick " ))

> >

> > Here's an example of how a three hour, 30 gram infusion should be

> ran:

> >

> > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next 30

min.,

> > then 200 ml/hr for the remainder of the infusion

> >

> > This is an average infusion--any problems with the infusion, and

> the

> > rates should be lowered.

> >

> > I don't know what product you are on--But your IgA was low normal

(

> > not too bad, really) but if it was Panglobulin--which contains

720

> mg

> > IgA---you could be having a hard time with the infusion because

of

> > that fact--as well as the fact that it contains quite a bit of

> > sucrose.....hard on the ole' renals in the long run.

> >

> > Some products are 5% solution, some are 10% solution--and the 10%

> one

> > would probaly help with your falling IgG rates by month end--but

> are

> > more viscous--and can cause more thrombotic episodes( like

> > phelbitises) so you have to weight the pros and the cons.

> >

> > Most IG products have a half-life of 21-28 days--so you IgG could

> > start to tank by months' end

> >

> > Consider trying Octagam ( by Octapharma--out of Austria) which

has

> a

> > half-life of 40 days. May help keep your levels up for longer.

> >

> > >

> > Alot 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.

> >

> > Most IVIG is pretty safe from the infectious disease stand point--

> > there has not been a recall in over 15 yrs in the USA---20 yrs

with

> > the Octagam in Germany--much better recall record than your

average

> > american automobile!!!

> >

> > Look at it this way: Yes, there is always the possiabilty of

> > something new getting into the blood supply----but with a

> suppressed

> > immune response--you may contact these pathogens anyway...on the

> > streets of the city!!!

> >

> > Most infectious disease doctors use IVIG all the time---his AIDS

> > patients use the product often( if in need) so I would have to

> guess

> > that he is getting flack from the insurance companies ( as far as

> not

> > wanting to order the IVIG for you) I don't believe that it's

> anything

> > to do with those of us who have Lyme being excluded ( as I know

> that

> > he no longer takes any new lyme patients---so it would not take

> much

> > to wonder if he was trying to " move along " his borrelia patients

> sent

> > in by Harvey )but I really don't think that is the case with

regard

> > to the IVIG situation.

> >

> > Let it be known that I went to this doctor for a short time while

> > living in Texas.....and was intially impressed--but like yourself

(

> > and many others)I, too--had one nightmare after another.....and I

> > finally left the practice--so I know what you are going though.

> >

> > That's why I had to stick my head up tonight......and offer up

what

> > asssistance that I can

> >

> > Take Care, Peg, and back-channel me when you can!!!!!

> >

> > Best,

> > Celiene

> >

> > >

September 7, 2005

Jill

click on photo's on this page and look at the third screen showing

red blod cells- wrongly named 'lanelle'.It appears under messages on

the left of the page.

tony

> > > > Hello Peg,

> > > >

> > > > I recieved your e-mail back-channel on Tuesday( sent on

> Friday),

> > as

> > > I

> > > > was hosting company for the last two weeks---and did not

attend

> > to

> > > > my " computer needs " ......Anyway

> > > >

> > > > I'm quite familiar with IVIG, both through my own personal

> usage

> > (

> > > I

> > > > am panhypogammaglobulinemia--which means " ALL " my antibody

> > classes

> > > > are low, not just IgG )and through working with the product

> > (PharmD)

> > > >

> > > > Your posting below is lenghty---so I am going to omit some

of

> > the

> > > > conversation--and zero in an areas of which I may lend

> > assistance:

> > > >

> > > > > I expressed

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

my

> > > > > brainstem,

> > > >

> > > > On a professional level.....I have never heard this theory,

but

> > it

> > > is

> > > > well-known that borrelia can cause white matter

> > hyperintensities,

> > > as

> > > > well as several other infectious agents that one with immune

> > > > supression could have come in contact with (

> > Brucella,mycoplasmas,

> > > > ect--Tony would be the better poster to answer that

particiliar

> > > > question---as microbiology isn't my speciality)

> > > >

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

> > > > > acitivty level at home increased.

> > > >

> > > > Not uncommon from someone with a depressed immune response.

> Does

> > > the

> > > > IVIG help your pain levels???? Because in those TBD

sufferers

> > that

> > > > deal with chronic perpherial neuropathies ( as I do) if has

> been

> > > > known to be a great help ( search Perpherial neuropathies

and

> > IVIG

> > > on

> > > > google scholar)

> > > > >

> > > > > 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

> > > >

> > > > As you well know, I am aware of who you are seeing in

Houston (

> > ID

> > > > Doctor) and it sounds like you were seeing Gailen Marshall

as

> > your

> > > > immunilogist--his move to Alabama has been a " pain in the

arse "

> > for

> > > > all who have had to seek other assistance for their

treatments.

> > (He

> > > is

> > > > going to be at the Instuite in Alabama) He is

not

> > a

> > > > LLMD of any sort--so it is just fine to post his name here.

> > > >

> > > > 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.

> > > >

> > > > Now, I am not a fan of ole Joe the ID Doc.,( we are not

> talking

> > > > about the famous Dr. B--just for future reference) but I'm

> > suprised

> > > > about this one---can I suggest an alternative reason why

this

> > might

> > > > be happening???

> > > >

> > > > I don't know who your insurance carrier is, but many of them

> > have

> > > pre-

> > > > set levels that the patient must be at to even be considered

> for

> > > IVIG

> > > > ( as it is about 6K for 30 grams) so ole Doc Joe may be

waiting

> > for

> > > > your levels to drop down into your insurers' qualifications--

> and

> > > when

> > > > they do--most doctors will treat with gamma if the need is

> > there,

> > > and

> > > > if they are able to--as it is quite the money maker for them

(

> > that

> > > > is not an insinuation, nor sarcasam--it's just the way that

it

> > > > is....they did go thru 12+ yrs of schooling, you would have

to

> > > expect

> > > > them to want to make some sort of money for all that

education)

> > > >

> > > > Just another angle on what could be happening with that

> scenerio-

> > -

> > > as

> > > > Capitiolism rules everything in the USA.

> > > >

> > > > 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.

> > > >

> > > > Are they still using 25 grams, for three consecutive days???

(

> > > total

> > > > of 75 grams over a 72 hour period) That used to be the

favorite

> > > > protocal. A 25 gram bag will be just that--one bag---are

they

> > > running

> > > > fluids into you at the same time??? One bag could have been

> > fluids,

> > > > the other the IVIG ( fluids would run first, or possibly at

the

> > > same

> > > > time)

> > > >

> > > > I

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

> > hours.

> > > >

> > > > That about the norm for dosages from 20-40 grams--three

hours

> > for

> > > > most folks--but if you have any of the following reactions--

the

> > > > infusion rate is to be slowed by 1/2--or stopped till the

> > reaction

> > > > subsides:

> > > >

> > > > Back Ache

> > > >

> > > > Headache( this is even if you are being pre-medicated with

> > benadyl,

> > > > and motrin--as if you are not---anyone can be in for one hum-

> > dinger

> > > > of a headache)

> > > >

> > > > Chills

> > > >

> > > > Fever

> > > >

> > > > Hypotension( systolic<100 diastolic<65)

> > > >

> > > > ,

> > > > > About thirty minutes into the process I

> > > > > started yawning, really big and really dramatically. I

> > couldn't

> > > > > stop.

> > > >

> > > > IVIG is known to cause that under normal conditions--and the

> > > benadryl-

> > > > -even if you handle it well---causes yawning.

> > > >

> > > > 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

> > > >

> > > > They should have stopped the infusion and contacted the

doctor(

> > > jack-

> > > > arses) as this is a reaction--who was the attending RN at

that

> > > > clinic?? And where were they??

> > > >

> > > > 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.

> > > >

> > > > Maybe you are tolerant of PO form of benadryl--but they main-

> > lined

> > > > you with the substance( placed it right into the IV line)---

and

> > > that

> > > > will stop the reaction--and knock a walrus out--but if you

were

> > > > having the reaction that you described above/below--they

really

> > had

> > > > no choice in the matter.

> > > >

> > > > I believe it

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

@lungs

> > > were

> > > > > contracting and jerking

> > > >

> > > > That's called a very strong reaction--!!

> > > >

> > > > 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.

> > > >

> > > > Word to the wise....find another infusion center, or ask for

> > home

> > > > health care. It doesn't sound as though this center is very

> > > > consienence of their patients' needs.

> > > >

> > > > ((Although I must say one other thing while on this topic of

> > > infusion

> > > > timing....some insurance carriers will not pay for nursing,

> ect.

> > > for

> > > > over three hours time with ANY IVIG infusion--if you need to

go

> > > > longer--the doctors' office may need to provide them with

some

> > sort

> > > > of documentation to back-up the additional nursing charges--

> > > although

> > > > a documented bad reaction should definatly do the " trick " ))

> > > >

> > > > Here's an example of how a three hour, 30 gram infusion

should

> > be

> > > ran:

> > > >

> > > > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next

30

> > min.,

> > > > then 200 ml/hr for the remainder of the infusion

> > > >

> > > > This is an average infusion--any problems with the infusion,

> and

> > > the

> > > > rates should be lowered.

> > > >

> > > > I don't know what product you are on--But your IgA was low

> > normal (

> > > > not too bad, really) but if it was Panglobulin--which

contains

> > 720

> > > mg

> > > > IgA---you could be having a hard time with the infusion

because

> > of

> > > > that fact--as well as the fact that it contains quite a bit

of

> > > > sucrose.....hard on the ole' renals in the long run.

> > > >

> > > > Some products are 5% solution, some are 10% solution--and

the

> > 10%

> > > one

> > > > would probaly help with your falling IgG rates by month end--

> but

> > > are

> > > > more viscous--and can cause more thrombotic episodes( like

> > > > phelbitises) so you have to weight the pros and the cons.

> > > >

> > > > Most IG products have a half-life of 21-28 days--so you IgG

> > could

> > > > start to tank by months' end

> > > >

> > > > Consider trying Octagam ( by Octapharma--out of Austria)

which

> > has

> > > a

> > > > half-life of 40 days. May help keep your levels up for

longer.

> > > >

> > > > >

> > > > Alot 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.

> > > >

> > > > Most IVIG is pretty safe from the infectious disease stand

> point-

> > -

> > > > there has not been a recall in over 15 yrs in the USA---20

yrs

> > with

> > > > the Octagam in Germany--much better recall record than your

> > average

> > > > american automobile!!!

> > > >

> > > > Look at it this way: Yes, there is always the possiabilty of

> > > > something new getting into the blood supply----but with a

> > > suppressed

> > > > immune response--you may contact these pathogens anyway...on

> the

> > > > streets of the city!!!

> > > >

> > > > Most infectious disease doctors use IVIG all the time---his

> AIDS

> > > > patients use the product often( if in need) so I would have

to

> > > guess

> > > > that he is getting flack from the insurance companies ( as

far

> > as

> > > not

> > > > wanting to order the IVIG for you) I don't believe that it's

> > > anything

> > > > to do with those of us who have Lyme being excluded ( as I

know

> > > that

> > > > he no longer takes any new lyme patients---so it would not

take

> > > much

> > > > to wonder if he was trying to " move along " his borrelia

> patients

> > > sent

> > > > in by Harvey )but I really don't think that is the case with

> > regard

> > > > to the IVIG situation.

> > > >

> > > > Let it be known that I went to this doctor for a short time

> > while

> > > > living in Texas.....and was intially impressed--but like

> yourself

> > (

> > > > and many others)I, too--had one nightmare after

another.....and

> > I

> > > > finally left the practice--so I know what you are going

though.

> > > >

> > > > That's why I had to stick my head up tonight......and offer

up

> > what

> > > > asssistance that I can

> > > >

> > > > Take Care, Peg, and back-channel me when you can!!!!!

> > > >

> > > > Best,

> > > > Celiene

> > > >

> > > > >

September 7, 2005

Maybe I have the names wrong. The one I like is the one without sugar-

-maybe thats Gamunex, come to think of it. Maybe Gammagard is the

baxter product with glucose and salt? I don't do as well with that,

more symptomatic.

I have been getting vitamin/mineral IV's for years, they are very

very helpful for me. Here's what i get, when my doc is in town (now

she's out of town and I have PMS and all my symptoms which would be

quenched by the IV's are flaring up....bla...)

1) IV vitamin/mineral of 6-8 cc's Vitamin C, 1 of b5, 1 of b6, 3 of

magnesium sulfate, 1 of calcium. In saline, using a butterfy (less

trauma to vein) that is very small guage. No b12 (make sme too

jittery) or b complex (stings)

2) A glutathione chaser of 1000 mg at the end, when there is about 20

cc left, so as to preserve th glutathione from oxidation as much as

possible

3) 5 grams of gamma, but not ever ytime, usually every 2 weeks.

Having hydrated myself with the previous stuff, I find that I

tolerate the gamma better that way so I'm suggesting it to the other

poster, even just a saline IV, then you just take the bag off and put

the bottle of gamma on, you don't have to reinfuse. She may tolerate

it better.

> > > Hello Peg,

> > >

> > > I recieved your e-mail back-channel on Tuesday( sent on

Friday),

> as

> > I

> > > was hosting company for the last two weeks---and did not attend

> to

> > > my " computer needs " ......Anyway

> > >

> > > I'm quite familiar with IVIG, both through my own personal

usage

> (

> > I

> > > am panhypogammaglobulinemia--which means " ALL " my antibody

> classes

> > > are low, not just IgG )and through working with the product

> (PharmD)

> > >

> > > Your posting below is lenghty---so I am going to omit some of

the

> > > conversation--and zero in an areas of which I may lend

assistance:

> > >

> > > > I expressed

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

> > > > brainstem,

> > >

> > > On a professional level.....I have never heard this theory, but

> it

> > is

> > > well-known that borrelia can cause white matter

hyperintensities,

> > as

> > > well as several other infectious agents that one with immune

> > > supression could have come in contact with (

> Brucella,mycoplasmas,

> > > ect--Tony would be the better poster to answer that particiliar

> > > question---as microbiology isn't my speciality)

> > >

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

> > > > acitivty level at home increased.

> > >

> > > Not uncommon from someone with a depressed immune response.

Does

> > the

> > > IVIG help your pain levels???? Because in those TBD sufferers

> that

> > > deal with chronic perpherial neuropathies ( as I do) if has

been

> > > known to be a great help ( search Perpherial neuropathies and

> IVIG

> > on

> > > google scholar)

> > > >

> > > > 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

> > >

> > > As you well know, I am aware of who you are seeing in Houston (

> ID

> > > Doctor) and it sounds like you were seeing Gailen Marshall as

> your

> > > immunilogist--his move to Alabama has been a " pain in the arse "

> for

> > > all who have had to seek other assistance for their treatments.

> (He

> > is

> > > going to be at the Instuite in Alabama) He is not

a

> > > LLMD of any sort--so it is just fine to post his name here.

> > >

> > > 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.

> > >

> > > Now, I am not a fan of ole Joe the ID Doc.,( we are not

talking

> > > about the famous Dr. B--just for future reference) but I'm

> suprised

> > > about this one---can I suggest an alternative reason why this

> might

> > > be happening???

> > >

> > > I don't know who your insurance carrier is, but many of them

have

> > pre-

> > > set levels that the patient must be at to even be considered

for

> > IVIG

> > > ( as it is about 6K for 30 grams) so ole Doc Joe may be waiting

> for

> > > your levels to drop down into your insurers' qualifications--

and

> > when

> > > they do--most doctors will treat with gamma if the need is

there,

> > and

> > > if they are able to--as it is quite the money maker for them (

> that

> > > is not an insinuation, nor sarcasam--it's just the way that it

> > > is....they did go thru 12+ yrs of schooling, you would have to

> > expect

> > > them to want to make some sort of money for all that education)

> > >

> > > Just another angle on what could be happening with that

scenerio--

> > as

> > > Capitiolism rules everything in the USA.

> > >

> > > 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.

> > >

> > > Are they still using 25 grams, for three consecutive days??? (

> > total

> > > of 75 grams over a 72 hour period) That used to be the favorite

> > > protocal. A 25 gram bag will be just that--one bag---are they

> > running

> > > fluids into you at the same time??? One bag could have been

> fluids,

> > > the other the IVIG ( fluids would run first, or possibly at the

> > same

> > > time)

> > >

> > > I

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

hours.

> > >

> > > That about the norm for dosages from 20-40 grams--three hours

for

> > > most folks--but if you have any of the following reactions--the

> > > infusion rate is to be slowed by 1/2--or stopped till the

> reaction

> > > subsides:

> > >

> > > Back Ache

> > >

> > > Headache( this is even if you are being pre-medicated with

> benadyl,

> > > and motrin--as if you are not---anyone can be in for one hum-

> dinger

> > > of a headache)

> > >

> > > Chills

> > >

> > > Fever

> > >

> > > Hypotension( systolic<100 diastolic<65)

> > >

> > > ,

> > > > About thirty minutes into the process I

> > > > started yawning, really big and really dramatically. I

couldn't

> > > > stop.

> > >

> > > IVIG is known to cause that under normal conditions--and the

> > benadryl-

> > > -even if you handle it well---causes yawning.

> > >

> > > 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

> > >

> > > They should have stopped the infusion and contacted the doctor(

> > jack-

> > > arses) as this is a reaction--who was the attending RN at that

> > > clinic?? And where were they??

> > >

> > > 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.

> > >

> > > Maybe you are tolerant of PO form of benadryl--but they main-

> lined

> > > you with the substance( placed it right into the IV line)---and

> > that

> > > will stop the reaction--and knock a walrus out--but if you were

> > > having the reaction that you described above/below--they really

> had

> > > no choice in the matter.

> > >

> > > I believe it

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

> > were

> > > > contracting and jerking

> > >

> > > That's called a very strong reaction--!!

> > >

> > > 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.

> > >

> > > Word to the wise....find another infusion center, or ask for

home

> > > health care. It doesn't sound as though this center is very

> > > consienence of their patients' needs.

> > >

> > > ((Although I must say one other thing while on this topic of

> > infusion

> > > timing....some insurance carriers will not pay for nursing,

ect.

> > for

> > > over three hours time with ANY IVIG infusion--if you need to go

> > > longer--the doctors' office may need to provide them with some

> sort

> > > of documentation to back-up the additional nursing charges--

> > although

> > > a documented bad reaction should definatly do the " trick " ))

> > >

> > > Here's an example of how a three hour, 30 gram infusion should

be

> > ran:

> > >

> > > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next 30

> min.,

> > > then 200 ml/hr for the remainder of the infusion

> > >

> > > This is an average infusion--any problems with the infusion,

and

> > the

> > > rates should be lowered.

> > >

> > > I don't know what product you are on--But your IgA was low

normal

> (

> > > not too bad, really) but if it was Panglobulin--which contains

> 720

> > mg

> > > IgA---you could be having a hard time with the infusion because

> of

> > > that fact--as well as the fact that it contains quite a bit of

> > > sucrose.....hard on the ole' renals in the long run.

> > >

> > > Some products are 5% solution, some are 10% solution--and the

10%

> > one

> > > would probaly help with your falling IgG rates by month end--

but

> > are

> > > more viscous--and can cause more thrombotic episodes( like

> > > phelbitises) so you have to weight the pros and the cons.

> > >

> > > Most IG products have a half-life of 21-28 days--so you IgG

could

> > > start to tank by months' end

> > >

> > > Consider trying Octagam ( by Octapharma--out of Austria) which

> has

> > a

> > > half-life of 40 days. May help keep your levels up for longer.

> > >

> > > >

> > > Alot 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.

> > >

> > > Most IVIG is pretty safe from the infectious disease stand

point--

> > > there has not been a recall in over 15 yrs in the USA---20 yrs

> with

> > > the Octagam in Germany--much better recall record than your

> average

> > > american automobile!!!

> > >

> > > Look at it this way: Yes, there is always the possiabilty of

> > > something new getting into the blood supply----but with a

> > suppressed

> > > immune response--you may contact these pathogens anyway...on

the

> > > streets of the city!!!

> > >

> > > Most infectious disease doctors use IVIG all the time---his

AIDS

> > > patients use the product often( if in need) so I would have to

> > guess

> > > that he is getting flack from the insurance companies ( as far

as

> > not

> > > wanting to order the IVIG for you) I don't believe that it's

> > anything

> > > to do with those of us who have Lyme being excluded ( as I know

> > that

> > > he no longer takes any new lyme patients---so it would not take

> > much

> > > to wonder if he was trying to " move along " his borrelia

patients

> > sent

> > > in by Harvey )but I really don't think that is the case with

> regard

> > > to the IVIG situation.

> > >

> > > Let it be known that I went to this doctor for a short time

while

> > > living in Texas.....and was intially impressed--but like

yourself

> (

> > > and many others)I, too--had one nightmare after another.....and

I

> > > finally left the practice--so I know what you are going though.

> > >

> > > That's why I had to stick my head up tonight......and offer up

> what

> > > asssistance that I can

> > >

> > > Take Care, Peg, and back-channel me when you can!!!!!

> > >

> > > Best,

> > > Celiene

> > >

> > > >

September 7, 2005

Tony, what are those little dots in your cells?

> > > > > Hello Peg,

> > > > >

> > > > > I recieved your e-mail back-channel on Tuesday( sent on

> > Friday),

> > > as

> > > > I

> > > > > was hosting company for the last two weeks---and did not

> attend

> > > to

> > > > > my " computer needs " ......Anyway

> > > > >

> > > > > I'm quite familiar with IVIG, both through my own personal

> > usage

> > > (

> > > > I

> > > > > am panhypogammaglobulinemia--which means " ALL " my antibody

> > > classes

> > > > > are low, not just IgG )and through working with the product

> > > (PharmD)

> > > > >

> > > > > Your posting below is lenghty---so I am going to omit some

> of

> > > the

> > > > > conversation--and zero in an areas of which I may lend

> > > assistance:

> > > > >

> > > > > > I expressed

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

on

> my

> > > > > > brainstem,

> > > > >

> > > > > On a professional level.....I have never heard this theory,

> but

> > > it

> > > > is

> > > > > well-known that borrelia can cause white matter

> > > hyperintensities,

> > > > as

> > > > > well as several other infectious agents that one with

immune

> > > > > supression could have come in contact with (

> > > Brucella,mycoplasmas,

> > > > > ect--Tony would be the better poster to answer that

> particiliar

> > > > > question---as microbiology isn't my speciality)

> > > > >

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

> > > > > > acitivty level at home increased.

> > > > >

> > > > > Not uncommon from someone with a depressed immune response.

> > Does

> > > > the

> > > > > IVIG help your pain levels???? Because in those TBD

> sufferers

> > > that

> > > > > deal with chronic perpherial neuropathies ( as I do) if has

> > been

> > > > > known to be a great help ( search Perpherial neuropathies

> and

> > > IVIG

> > > > on

> > > > > google scholar)

> > > > > >

> > > > > > 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

> > > > >

> > > > > As you well know, I am aware of who you are seeing in

> Houston (

> > > ID

> > > > > Doctor) and it sounds like you were seeing Gailen Marshall

> as

> > > your

> > > > > immunilogist--his move to Alabama has been a " pain in the

> arse "

> > > for

> > > > > all who have had to seek other assistance for their

> treatments.

> > > (He

> > > > is

> > > > > going to be at the Instuite in Alabama) He is

> not

> > > a

> > > > > LLMD of any sort--so it is just fine to post his name here.

> > > > >

> > > > > 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.

> > > > >

> > > > > Now, I am not a fan of ole Joe the ID Doc.,( we are not

> > talking

> > > > > about the famous Dr. B--just for future reference) but I'm

> > > suprised

> > > > > about this one---can I suggest an alternative reason why

> this

> > > might

> > > > > be happening???

> > > > >

> > > > > I don't know who your insurance carrier is, but many of

them

> > > have

> > > > pre-

> > > > > set levels that the patient must be at to even be

considered

> > for

> > > > IVIG

> > > > > ( as it is about 6K for 30 grams) so ole Doc Joe may be

> waiting

> > > for

> > > > > your levels to drop down into your insurers' qualifications-

-

> > and

> > > > when

> > > > > they do--most doctors will treat with gamma if the need is

> > > there,

> > > > and

> > > > > if they are able to--as it is quite the money maker for

them

> (

> > > that

> > > > > is not an insinuation, nor sarcasam--it's just the way that

> it

> > > > > is....they did go thru 12+ yrs of schooling, you would have

> to

> > > > expect

> > > > > them to want to make some sort of money for all that

> education)

> > > > >

> > > > > Just another angle on what could be happening with that

> > scenerio-

> > > -

> > > > as

> > > > > Capitiolism rules everything in the USA.

> > > > >

> > > > > 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.

> > > > >

> > > > > Are they still using 25 grams, for three consecutive

days???

> (

> > > > total

> > > > > of 75 grams over a 72 hour period) That used to be the

> favorite

> > > > > protocal. A 25 gram bag will be just that--one bag---are

> they

> > > > running

> > > > > fluids into you at the same time??? One bag could have been

> > > fluids,

> > > > > the other the IVIG ( fluids would run first, or possibly at

> the

> > > > same

> > > > > time)

> > > > >

> > > > > I

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

> > > hours.

> > > > >

> > > > > That about the norm for dosages from 20-40 grams--three

> hours

> > > for

> > > > > most folks--but if you have any of the following reactions--

> the

> > > > > infusion rate is to be slowed by 1/2--or stopped till the

> > > reaction

> > > > > subsides:

> > > > >

> > > > > Back Ache

> > > > >

> > > > > Headache( this is even if you are being pre-medicated with

> > > benadyl,

> > > > > and motrin--as if you are not---anyone can be in for one

hum-

> > > dinger

> > > > > of a headache)

> > > > >

> > > > > Chills

> > > > >

> > > > > Fever

> > > > >

> > > > > Hypotension( systolic<100 diastolic<65)

> > > > >

> > > > > ,

> > > > > > About thirty minutes into the process I

> > > > > > started yawning, really big and really dramatically. I

> > > couldn't

> > > > > > stop.

> > > > >

> > > > > IVIG is known to cause that under normal conditions--and

the

> > > > benadryl-

> > > > > -even if you handle it well---causes yawning.

> > > > >

> > > > > 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

> > > > >

> > > > > They should have stopped the infusion and contacted the

> doctor(

> > > > jack-

> > > > > arses) as this is a reaction--who was the attending RN at

> that

> > > > > clinic?? And where were they??

> > > > >

> > > > > 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.

> > > > >

> > > > > Maybe you are tolerant of PO form of benadryl--but they

main-

> > > lined

> > > > > you with the substance( placed it right into the IV line)---

> and

> > > > that

> > > > > will stop the reaction--and knock a walrus out--but if you

> were

> > > > > having the reaction that you described above/below--they

> really

> > > had

> > > > > no choice in the matter.

> > > > >

> > > > > I believe it

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

> @lungs

> > > > were

> > > > > > contracting and jerking

> > > > >

> > > > > That's called a very strong reaction--!!

> > > > >

> > > > > 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.

> > > > >

> > > > > Word to the wise....find another infusion center, or ask

for

> > > home

> > > > > health care. It doesn't sound as though this center is very

> > > > > consienence of their patients' needs.

> > > > >

> > > > > ((Although I must say one other thing while on this topic

of

> > > > infusion

> > > > > timing....some insurance carriers will not pay for nursing,

> > ect.

> > > > for

> > > > > over three hours time with ANY IVIG infusion--if you need

to

> go

> > > > > longer--the doctors' office may need to provide them with

> some

> > > sort

> > > > > of documentation to back-up the additional nursing charges--

> > > > although

> > > > > a documented bad reaction should definatly do the " trick " ))

> > > > >

> > > > > Here's an example of how a three hour, 30 gram infusion

> should

> > > be

> > > > ran:

> > > > >

> > > > > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next

> 30

> > > min.,

> > > > > then 200 ml/hr for the remainder of the infusion

> > > > >

> > > > > This is an average infusion--any problems with the

infusion,

> > and

> > > > the

> > > > > rates should be lowered.

> > > > >

> > > > > I don't know what product you are on--But your IgA was low

> > > normal (

> > > > > not too bad, really) but if it was Panglobulin--which

> contains

> > > 720

> > > > mg

> > > > > IgA---you could be having a hard time with the infusion

> because

> > > of

> > > > > that fact--as well as the fact that it contains quite a bit

> of

> > > > > sucrose.....hard on the ole' renals in the long run.

> > > > >

> > > > > Some products are 5% solution, some are 10% solution--and

> the

> > > 10%

> > > > one

> > > > > would probaly help with your falling IgG rates by month end-

-

> > but

> > > > are

> > > > > more viscous--and can cause more thrombotic episodes( like

> > > > > phelbitises) so you have to weight the pros and the cons.

> > > > >

> > > > > Most IG products have a half-life of 21-28 days--so you IgG

> > > could

> > > > > start to tank by months' end

> > > > >

> > > > > Consider trying Octagam ( by Octapharma--out of Austria)

> which

> > > has

> > > > a

> > > > > half-life of 40 days. May help keep your levels up for

> longer.

> > > > >

> > > > > >

> > > > > Alot 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.

> > > > >

> > > > > Most IVIG is pretty safe from the infectious disease stand

> > point-

> > > -

> > > > > there has not been a recall in over 15 yrs in the USA---20

> yrs

> > > with

> > > > > the Octagam in Germany--much better recall record than your

> > > average

> > > > > american automobile!!!

> > > > >

> > > > > Look at it this way: Yes, there is always the possiabilty

of

> > > > > something new getting into the blood supply----but with a

> > > > suppressed

> > > > > immune response--you may contact these pathogens

anyway...on

> > the

> > > > > streets of the city!!!

> > > > >

> > > > > Most infectious disease doctors use IVIG all the time---his

> > AIDS

> > > > > patients use the product often( if in need) so I would have

> to

> > > > guess

> > > > > that he is getting flack from the insurance companies ( as

> far

> > > as

> > > > not

> > > > > wanting to order the IVIG for you) I don't believe that

it's

> > > > anything

> > > > > to do with those of us who have Lyme being excluded ( as I

> know

> > > > that

> > > > > he no longer takes any new lyme patients---so it would not

> take

> > > > much

> > > > > to wonder if he was trying to " move along " his borrelia

> > patients

> > > > sent

> > > > > in by Harvey )but I really don't think that is the case

with

> > > regard

> > > > > to the IVIG situation.

> > > > >

> > > > > Let it be known that I went to this doctor for a short time

> > > while

> > > > > living in Texas.....and was intially impressed--but like

> > yourself

> > > (

> > > > > and many others)I, too--had one nightmare after

> another.....and

> > > I

> > > > > finally left the practice--so I know what you are going

> though.

> > > > >

> > > > > That's why I had to stick my head up tonight......and offer

> up

> > > what

> > > > > asssistance that I can

> > > > >

> > > > > Take Care, Peg, and back-channel me when you can!!!!!

> > > > >

> > > > > Best,

> > > > > Celiene

> > > > >

> > > > > >

September 7, 2005

Barb

I grow the same bacteria out of my blood. I realise the medical

community call them all different things, and our bloodstream's are

also sterile and we need psychiatric help.The difference is that you

actually count the percentage of howell jolly- coccus forms and when

they disappear you feel GREAT.Barb this was my first attempt at a

blood slide and it does take a little getting used to.Remember

tarello works the animals until they disappear with his arsenical

treatments.

You also don't grow anything when the howell jolly body's are not

there.The trick is the size- when you take these to a lab and use

the eyepiece with the size markings they are the perfect coccus

bacteria.Barb the jaw you describe(clenching) is the perfect staging

ground for the coccal forms in your blood.Mcgreggor et al.The other

tip is the haemolytic anemia(blood counts) and high number of red

cell's destroyed over the few photo's that I didn't post.

Anyway's I just thought I'd put them up there for the red cell and

babesia that I don't seem to have.

tony

> > > > Hello Peg,

> > > >

> > > > I recieved your e-mail back-channel on Tuesday( sent on

> Friday),

> > as

> > > I

> > > > was hosting company for the last two weeks---and did not

attend

> > to

> > > > my " computer needs " ......Anyway

> > > >

> > > > I'm quite familiar with IVIG, both through my own personal

> usage

> > (

> > > I

> > > > am panhypogammaglobulinemia--which means " ALL " my antibody

> > classes

> > > > are low, not just IgG )and through working with the product

> > (PharmD)

> > > >

> > > > Your posting below is lenghty---so I am going to omit some

of

> > the

> > > > conversation--and zero in an areas of which I may lend

> > assistance:

> > > >

> > > > > I expressed

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

my

> > > > > brainstem,

> > > >

> > > > On a professional level.....I have never heard this theory,

but

> > it

> > > is

> > > > well-known that borrelia can cause white matter

> > hyperintensities,

> > > as

> > > > well as several other infectious agents that one with immune

> > > > supression could have come in contact with (

> > Brucella,mycoplasmas,

> > > > ect--Tony would be the better poster to answer that

particiliar

> > > > question---as microbiology isn't my speciality)

> > > >

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

> > > > > acitivty level at home increased.

> > > >

> > > > Not uncommon from someone with a depressed immune response.

> Does

> > > the

> > > > IVIG help your pain levels???? Because in those TBD

sufferers

> > that

> > > > deal with chronic perpherial neuropathies ( as I do) if has

> been

> > > > known to be a great help ( search Perpherial neuropathies

and

> > IVIG

> > > on

> > > > google scholar)

> > > > >

> > > > > 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

> > > >

> > > > As you well know, I am aware of who you are seeing in

Houston (

> > ID

> > > > Doctor) and it sounds like you were seeing Gailen Marshall

as

> > your

> > > > immunilogist--his move to Alabama has been a " pain in the

arse "

> > for

> > > > all who have had to seek other assistance for their

treatments.

> > (He

> > > is

> > > > going to be at the Instuite in Alabama) He is

not

> > a

> > > > LLMD of any sort--so it is just fine to post his name here.

> > > >

> > > > 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.

> > > >

> > > > Now, I am not a fan of ole Joe the ID Doc.,( we are not

> talking

> > > > about the famous Dr. B--just for future reference) but I'm

> > suprised

> > > > about this one---can I suggest an alternative reason why

this

> > might

> > > > be happening???

> > > >

> > > > I don't know who your insurance carrier is, but many of them

> > have

> > > pre-

> > > > set levels that the patient must be at to even be considered

> for

> > > IVIG

> > > > ( as it is about 6K for 30 grams) so ole Doc Joe may be

waiting

> > for

> > > > your levels to drop down into your insurers' qualifications--

> and

> > > when

> > > > they do--most doctors will treat with gamma if the need is

> > there,

> > > and

> > > > if they are able to--as it is quite the money maker for them

(

> > that

> > > > is not an insinuation, nor sarcasam--it's just the way that

it

> > > > is....they did go thru 12+ yrs of schooling, you would have

to

> > > expect

> > > > them to want to make some sort of money for all that

education)

> > > >

> > > > Just another angle on what could be happening with that

> scenerio-

> > -

> > > as

> > > > Capitiolism rules everything in the USA.

> > > >

> > > > 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.

> > > >

> > > > Are they still using 25 grams, for three consecutive days???

(

> > > total

> > > > of 75 grams over a 72 hour period) That used to be the

favorite

> > > > protocal. A 25 gram bag will be just that--one bag---are

they

> > > running

> > > > fluids into you at the same time??? One bag could have been

> > fluids,

> > > > the other the IVIG ( fluids would run first, or possibly at

the

> > > same

> > > > time)

> > > >

> > > > I

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

> > hours.

> > > >

> > > > That about the norm for dosages from 20-40 grams--three

hours

> > for

> > > > most folks--but if you have any of the following reactions--

the

> > > > infusion rate is to be slowed by 1/2--or stopped till the

> > reaction

> > > > subsides:

> > > >

> > > > Back Ache

> > > >

> > > > Headache( this is even if you are being pre-medicated with

> > benadyl,

> > > > and motrin--as if you are not---anyone can be in for one hum-

> > dinger

> > > > of a headache)

> > > >

> > > > Chills

> > > >

> > > > Fever

> > > >

> > > > Hypotension( systolic<100 diastolic<65)

> > > >

> > > > ,

> > > > > About thirty minutes into the process I

> > > > > started yawning, really big and really dramatically. I

> > couldn't

> > > > > stop.

> > > >

> > > > IVIG is known to cause that under normal conditions--and the

> > > benadryl-

> > > > -even if you handle it well---causes yawning.

> > > >

> > > > 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

> > > >

> > > > They should have stopped the infusion and contacted the

doctor(

> > > jack-

> > > > arses) as this is a reaction--who was the attending RN at

that

> > > > clinic?? And where were they??

> > > >

> > > > 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.

> > > >

> > > > Maybe you are tolerant of PO form of benadryl--but they main-

> > lined

> > > > you with the substance( placed it right into the IV line)---

and

> > > that

> > > > will stop the reaction--and knock a walrus out--but if you

were

> > > > having the reaction that you described above/below--they

really

> > had

> > > > no choice in the matter.

> > > >

> > > > I believe it

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

@lungs

> > > were

> > > > > contracting and jerking

> > > >

> > > > That's called a very strong reaction--!!

> > > >

> > > > 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.

> > > >

> > > > Word to the wise....find another infusion center, or ask for

> > home

> > > > health care. It doesn't sound as though this center is very

> > > > consienence of their patients' needs.

> > > >

> > > > ((Although I must say one other thing while on this topic of

> > > infusion

> > > > timing....some insurance carriers will not pay for nursing,

> ect.

> > > for

> > > > over three hours time with ANY IVIG infusion--if you need to

go

> > > > longer--the doctors' office may need to provide them with

some

> > sort

> > > > of documentation to back-up the additional nursing charges--

> > > although

> > > > a documented bad reaction should definatly do the " trick " ))

> > > >

> > > > Here's an example of how a three hour, 30 gram infusion

should

> > be

> > > ran:

> > > >

> > > > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next

30

> > min.,

> > > > then 200 ml/hr for the remainder of the infusion

> > > >

> > > > This is an average infusion--any problems with the infusion,

> and

> > > the

> > > > rates should be lowered.

> > > >

> > > > I don't know what product you are on--But your IgA was low

> > normal (

> > > > not too bad, really) but if it was Panglobulin--which

contains

> > 720

> > > mg

> > > > IgA---you could be having a hard time with the infusion

because

> > of

> > > > that fact--as well as the fact that it contains quite a bit

of

> > > > sucrose.....hard on the ole' renals in the long run.

> > > >

> > > > Some products are 5% solution, some are 10% solution--and

the

> > 10%

> > > one

> > > > would probaly help with your falling IgG rates by month end--

> but

> > > are

> > > > more viscous--and can cause more thrombotic episodes( like

> > > > phelbitises) so you have to weight the pros and the cons.

> > > >

> > > > Most IG products have a half-life of 21-28 days--so you IgG

> > could

> > > > start to tank by months' end

> > > >

> > > > Consider trying Octagam ( by Octapharma--out of Austria)

which

> > has

> > > a

> > > > half-life of 40 days. May help keep your levels up for

longer.

> > > >

> > > > >

> > > > Alot 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.

> > > >

> > > > Most IVIG is pretty safe from the infectious disease stand

> point-

> > -

> > > > there has not been a recall in over 15 yrs in the USA---20

yrs

> > with

> > > > the Octagam in Germany--much better recall record than your

> > average

> > > > american automobile!!!

> > > >

> > > > Look at it this way: Yes, there is always the possiabilty of

> > > > something new getting into the blood supply----but with a

> > > suppressed

> > > > immune response--you may contact these pathogens anyway...on

> the

> > > > streets of the city!!!

> > > >

> > > > Most infectious disease doctors use IVIG all the time---his

> AIDS

> > > > patients use the product often( if in need) so I would have

to

> > > guess

> > > > that he is getting flack from the insurance companies ( as

far

> > as

> > > not

> > > > wanting to order the IVIG for you) I don't believe that it's

> > > anything

> > > > to do with those of us who have Lyme being excluded ( as I

know

> > > that

> > > > he no longer takes any new lyme patients---so it would not

take

> > > much

> > > > to wonder if he was trying to " move along " his borrelia

> patients

> > > sent

> > > > in by Harvey )but I really don't think that is the case with

> > regard

> > > > to the IVIG situation.

> > > >

> > > > Let it be known that I went to this doctor for a short time

> > while

> > > > living in Texas.....and was intially impressed--but like

> yourself

> > (

> > > > and many others)I, too--had one nightmare after

another.....and

> > I

> > > > finally left the practice--so I know what you are going

though.

> > > >

> > > > That's why I had to stick my head up tonight......and offer

up

> > what

> > > > asssistance that I can

> > > >

> > > > Take Care, Peg, and back-channel me when you can!!!!!

> > > >

> > > > Best,

> > > > Celiene

> > > >

> > > > >

September 7, 2005

micrococci- that grow into staphylococcus haemolyticus when tested

further.

> > > > > > Hello Peg,

> > > > > >

> > > > > > I recieved your e-mail back-channel on Tuesday( sent on

> > > Friday),

> > > > as

> > > > > I

> > > > > > was hosting company for the last two weeks---and did not

> > attend

> > > > to

> > > > > > my " computer needs " ......Anyway

> > > > > >

> > > > > > I'm quite familiar with IVIG, both through my own

personal

> > > usage

> > > > (

> > > > > I

> > > > > > am panhypogammaglobulinemia--which means " ALL " my

antibody

> > > > classes

> > > > > > are low, not just IgG )and through working with the

product

> > > > (PharmD)

> > > > > >

> > > > > > Your posting below is lenghty---so I am going to omit

some

> > of

> > > > the

> > > > > > conversation--and zero in an areas of which I may lend

> > > > assistance:

> > > > > >

> > > > > > > I expressed

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

lesions

> on

> > my

> > > > > > > brainstem,

> > > > > >

> > > > > > On a professional level.....I have never heard this

theory,

> > but

> > > > it

> > > > > is

> > > > > > well-known that borrelia can cause white matter

> > > > hyperintensities,

> > > > > as

> > > > > > well as several other infectious agents that one with

> immune

> > > > > > supression could have come in contact with (

> > > > Brucella,mycoplasmas,

> > > > > > ect--Tony would be the better poster to answer that

> > particiliar

> > > > > > question---as microbiology isn't my speciality)

> > > > > >

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

> > > > > > > acitivty level at home increased.

> > > > > >

> > > > > > Not uncommon from someone with a depressed immune

response.

> > > Does

> > > > > the

> > > > > > IVIG help your pain levels???? Because in those TBD

> > sufferers

> > > > that

> > > > > > deal with chronic perpherial neuropathies ( as I do) if

has

> > > been

> > > > > > known to be a great help ( search Perpherial

neuropathies

> > and

> > > > IVIG

> > > > > on

> > > > > > google scholar)

> > > > > > >

> > > > > > > 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

> > > > > >

> > > > > > As you well know, I am aware of who you are seeing in

> > Houston (

> > > > ID

> > > > > > Doctor) and it sounds like you were seeing Gailen

Marshall

> > as

> > > > your

> > > > > > immunilogist--his move to Alabama has been a " pain in

the

> > arse "

> > > > for

> > > > > > all who have had to seek other assistance for their

> > treatments.

> > > > (He

> > > > > is

> > > > > > going to be at the Instuite in Alabama) He

is

> > not

> > > > a

> > > > > > LLMD of any sort--so it is just fine to post his name

here.

> > > > > >

> > > > > > 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.

> > > > > >

> > > > > > Now, I am not a fan of ole Joe the ID Doc.,( we are not

> > > talking

> > > > > > about the famous Dr. B--just for future reference) but

I'm

> > > > suprised

> > > > > > about this one---can I suggest an alternative reason why

> > this

> > > > might

> > > > > > be happening???

> > > > > >

> > > > > > I don't know who your insurance carrier is, but many of

> them

> > > > have

> > > > > pre-

> > > > > > set levels that the patient must be at to even be

> considered

> > > for

> > > > > IVIG

> > > > > > ( as it is about 6K for 30 grams) so ole Doc Joe may be

> > waiting

> > > > for

> > > > > > your levels to drop down into your insurers'

qualifications-

> -

> > > and

> > > > > when

> > > > > > they do--most doctors will treat with gamma if the need

is

> > > > there,

> > > > > and

> > > > > > if they are able to--as it is quite the money maker for

> them

> > (

> > > > that

> > > > > > is not an insinuation, nor sarcasam--it's just the way

that

> > it

> > > > > > is....they did go thru 12+ yrs of schooling, you would

have

> > to

> > > > > expect

> > > > > > them to want to make some sort of money for all that

> > education)

> > > > > >

> > > > > > Just another angle on what could be happening with that

> > > scenerio-

> > > > -

> > > > > as

> > > > > > Capitiolism rules everything in the USA.

> > > > > >

> > > > > > 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.

> > > > > >

> > > > > > Are they still using 25 grams, for three consecutive

> days???

> > (

> > > > > total

> > > > > > of 75 grams over a 72 hour period) That used to be the

> > favorite

> > > > > > protocal. A 25 gram bag will be just that--one bag---are

> > they

> > > > > running

> > > > > > fluids into you at the same time??? One bag could have

been

> > > > fluids,

> > > > > > the other the IVIG ( fluids would run first, or possibly

at

> > the

> > > > > same

> > > > > > time)

> > > > > >

> > > > > > I

> > > > > > > didn't think it was possible as before one bag took

three

> > > > hours.

> > > > > >

> > > > > > That about the norm for dosages from 20-40 grams--three

> > hours

> > > > for

> > > > > > most folks--but if you have any of the following

reactions--

> > the

> > > > > > infusion rate is to be slowed by 1/2--or stopped till

the

> > > > reaction

> > > > > > subsides:

> > > > > >

> > > > > > Back Ache

> > > > > >

> > > > > > Headache( this is even if you are being pre-medicated

with

> > > > benadyl,

> > > > > > and motrin--as if you are not---anyone can be in for one

> hum-

> > > > dinger

> > > > > > of a headache)

> > > > > >

> > > > > > Chills

> > > > > >

> > > > > > Fever

> > > > > >

> > > > > > Hypotension( systolic<100 diastolic<65)

> > > > > >

> > > > > > ,

> > > > > > > About thirty minutes into the process I

> > > > > > > started yawning, really big and really dramatically. I

> > > > couldn't

> > > > > > > stop.

> > > > > >

> > > > > > IVIG is known to cause that under normal conditions--and

> the

> > > > > benadryl-

> > > > > > -even if you handle it well---causes yawning.

> > > > > >

> > > > > > 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

> > > > > >

> > > > > > They should have stopped the infusion and contacted the

> > doctor(

> > > > > jack-

> > > > > > arses) as this is a reaction--who was the attending RN

at

> > that

> > > > > > clinic?? And where were they??

> > > > > >

> > > > > > 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.

> > > > > >

> > > > > > Maybe you are tolerant of PO form of benadryl--but they

> main-

> > > > lined

> > > > > > you with the substance( placed it right into the IV

line)---

> > and

> > > > > that

> > > > > > will stop the reaction--and knock a walrus out--but if

you

> > were

> > > > > > having the reaction that you described above/below--they

> > really

> > > > had

> > > > > > no choice in the matter.

> > > > > >

> > > > > > I believe it

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

> > @lungs

> > > > > were

> > > > > > > contracting and jerking

> > > > > >

> > > > > > That's called a very strong reaction--!!

> > > > > >

> > > > > > 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.

> > > > > >

> > > > > > Word to the wise....find another infusion center, or ask

> for

> > > > home

> > > > > > health care. It doesn't sound as though this center is

very

> > > > > > consienence of their patients' needs.

> > > > > >

> > > > > > ((Although I must say one other thing while on this

topic

> of

> > > > > infusion

> > > > > > timing....some insurance carriers will not pay for

nursing,

> > > ect.

> > > > > for

> > > > > > over three hours time with ANY IVIG infusion--if you

need

> to

> > go

> > > > > > longer--the doctors' office may need to provide them

with

> > some

> > > > sort

> > > > > > of documentation to back-up the additional nursing

charges--

> > > > > although

> > > > > > a documented bad reaction should definatly do

the " trick " ))

> > > > > >

> > > > > > Here's an example of how a three hour, 30 gram infusion

> > should

> > > > be

> > > > > ran:

> > > > > >

> > > > > > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the

> > > > min.,

> > > > > > then 200 ml/hr for the remainder of the infusion

> > > > > >

> > > > > > This is an average infusion--any problems with the

> infusion,

> > > and

> > > > > the

> > > > > > rates should be lowered.

> > > > > >

> > > > > > I don't know what product you are on--But your IgA was

low

> > > > normal (

> > > > > > not too bad, really) but if it was Panglobulin--which

> > contains

> > > > 720

> > > > > mg

> > > > > > IgA---you could be having a hard time with the infusion

> > because

> > > > of

> > > > > > that fact--as well as the fact that it contains quite a

bit

> > of

> > > > > > sucrose.....hard on the ole' renals in the long run.

> > > > > >

> > > > > > Some products are 5% solution, some are 10% solution--

and

> > the

> > > > 10%

> > > > > one

> > > > > > would probaly help with your falling IgG rates by month

end-

> -

> > > but

> > > > > are

> > > > > > more viscous--and can cause more thrombotic episodes(

like

> > > > > > phelbitises) so you have to weight the pros and the cons.

> > > > > >

> > > > > > Most IG products have a half-life of 21-28 days--so you

IgG

> > > > could

> > > > > > start to tank by months' end

> > > > > >

> > > > > > Consider trying Octagam ( by Octapharma--out of Austria)

> > which

> > > > has

> > > > > a

> > > > > > half-life of 40 days. May help keep your levels up for

> > longer.

> > > > > >

> > > > > > >

> > > > > > Alot 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.

> > > > > >

> > > > > > Most IVIG is pretty safe from the infectious disease

stand

> > > point-

> > > > -

> > > > > > there has not been a recall in over 15 yrs in the USA---

20

> > yrs

> > > > with

> > > > > > the Octagam in Germany--much better recall record than

your

> > > > average

> > > > > > american automobile!!!

> > > > > >

> > > > > > Look at it this way: Yes, there is always the

possiabilty

> of

> > > > > > something new getting into the blood supply----but with

a

> > > > > suppressed

> > > > > > immune response--you may contact these pathogens

> anyway...on

> > > the

> > > > > > streets of the city!!!

> > > > > >

> > > > > > Most infectious disease doctors use IVIG all the time---

his

> > > AIDS

> > > > > > patients use the product often( if in need) so I would

have

> > to

> > > > > guess

> > > > > > that he is getting flack from the insurance companies (

as

> > far

> > > > as

> > > > > not

> > > > > > wanting to order the IVIG for you) I don't believe that

> it's

> > > > > anything

> > > > > > to do with those of us who have Lyme being excluded ( as

I

> > know

> > > > > that

> > > > > > he no longer takes any new lyme patients---so it would

not

> > take

> > > > > much

> > > > > > to wonder if he was trying to " move along " his borrelia

> > > patients

> > > > > sent

> > > > > > in by Harvey )but I really don't think that is the case

> with

> > > > regard

> > > > > > to the IVIG situation.

> > > > > >

> > > > > > Let it be known that I went to this doctor for a short

time

> > > > while

> > > > > > living in Texas.....and was intially impressed--but like

> > > yourself

> > > > (

> > > > > > and many others)I, too--had one nightmare after

> > another.....and

> > > > I

> > > > > > finally left the practice--so I know what you are going

> > though.

> > > > > >

> > > > > > That's why I had to stick my head up tonight......and

offer

> > up

> > > > what

> > > > > > asssistance that I can

> > > > > >

> > > > > > Take Care, Peg, and back-channel me when you can!!!!!

> > > > > >

> > > > > > Best,

> > > > > > Celiene

> > > > > >

> > > > > > >

September 7, 2005

Yeah, I agree. My veins used to be fine for drawing blood, but after

a moderate amount of infusions of minerals, H202, etc., they have a

really hard time getting a vein now. I can't believe how quickly it

happened. PICC line is way easier, but I can't help but wonder if

anything's going on there, too. That line is way closer to the heart

than the office infusion is.

penny

> > > Hello Peg,

> > >

> > > I recieved your e-mail back-channel on Tuesday( sent on

Friday),

> as

> > I

> > > was hosting company for the last two weeks---and did not

attend

> to

> > > my " computer needs " ......Anyway

> > >

> > > I'm quite familiar with IVIG, both through my own personal

usage

> (

> > I

> > > am panhypogammaglobulinemia--which means " ALL " my antibody

> classes

> > > are low, not just IgG )and through working with the product

> (PharmD)

> > >

> > > Your posting below is lenghty---so I am going to omit some of

the

> > > conversation--and zero in an areas of which I may lend

assistance:

> > >

> > > > I expressed

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

my

> > > > brainstem,

> > >

> > > On a professional level.....I have never heard this theory,

but

> it

> > is

> > > well-known that borrelia can cause white matter

hyperintensities,

> > as

> > > well as several other infectious agents that one with immune

> > > supression could have come in contact with (

> Brucella,mycoplasmas,

> > > ect--Tony would be the better poster to answer that

particiliar

> > > question---as microbiology isn't my speciality)

> > >

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

> > > > acitivty level at home increased.

> > >

> > > Not uncommon from someone with a depressed immune response.

Does

> > the

> > > IVIG help your pain levels???? Because in those TBD sufferers

> that

> > > deal with chronic perpherial neuropathies ( as I do) if has

been

> > > known to be a great help ( search Perpherial neuropathies and

> IVIG

> > on

> > > google scholar)

> > > >

> > > > 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

> > >

> > > As you well know, I am aware of who you are seeing in Houston

(

> ID

> > > Doctor) and it sounds like you were seeing Gailen Marshall as

> your

> > > immunilogist--his move to Alabama has been a " pain in the

arse "

> for

> > > all who have had to seek other assistance for their treatments.

> (He

> > is

> > > going to be at the Instuite in Alabama) He is

not a

> > > LLMD of any sort--so it is just fine to post his name here.

> > >

> > > 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.

> > >

> > > Now, I am not a fan of ole Joe the ID Doc.,( we are not

talking

> > > about the famous Dr. B--just for future reference) but I'm

> suprised

> > > about this one---can I suggest an alternative reason why this

> might

> > > be happening???

> > >

> > > I don't know who your insurance carrier is, but many of them

have

> > pre-

> > > set levels that the patient must be at to even be considered

for

> > IVIG

> > > ( as it is about 6K for 30 grams) so ole Doc Joe may be

waiting

> for

> > > your levels to drop down into your insurers' qualifications--

and

> > when

> > > they do--most doctors will treat with gamma if the need is

there,

> > and

> > > if they are able to--as it is quite the money maker for them (

> that

> > > is not an insinuation, nor sarcasam--it's just the way that it

> > > is....they did go thru 12+ yrs of schooling, you would have to

> > expect

> > > them to want to make some sort of money for all that education)

> > >

> > > Just another angle on what could be happening with that

scenerio--

> > as

> > > Capitiolism rules everything in the USA.

> > >

> > > 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.

> > >

> > > Are they still using 25 grams, for three consecutive days??? (

> > total

> > > of 75 grams over a 72 hour period) That used to be the

favorite

> > > protocal. A 25 gram bag will be just that--one bag---are they

> > running

> > > fluids into you at the same time??? One bag could have been

> fluids,

> > > the other the IVIG ( fluids would run first, or possibly at

the

> > same

> > > time)

> > >

> > > I

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

hours.

> > >

> > > That about the norm for dosages from 20-40 grams--three hours

for

> > > most folks--but if you have any of the following reactions--

the

> > > infusion rate is to be slowed by 1/2--or stopped till the

> reaction

> > > subsides:

> > >

> > > Back Ache

> > >

> > > Headache( this is even if you are being pre-medicated with

> benadyl,

> > > and motrin--as if you are not---anyone can be in for one hum-

> dinger

> > > of a headache)

> > >

> > > Chills

> > >

> > > Fever

> > >

> > > Hypotension( systolic<100 diastolic<65)

> > >

> > > ,

> > > > About thirty minutes into the process I

> > > > started yawning, really big and really dramatically. I

couldn't

> > > > stop.

> > >

> > > IVIG is known to cause that under normal conditions--and the

> > benadryl-

> > > -even if you handle it well---causes yawning.

> > >

> > > 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

> > >

> > > They should have stopped the infusion and contacted the doctor

(

> > jack-

> > > arses) as this is a reaction--who was the attending RN at

that

> > > clinic?? And where were they??

> > >

> > > 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.

> > >

> > > Maybe you are tolerant of PO form of benadryl--but they main-

> lined

> > > you with the substance( placed it right into the IV line)---

and

> > that

> > > will stop the reaction--and knock a walrus out--but if you

were

> > > having the reaction that you described above/below--they

really

> had

> > > no choice in the matter.

> > >

> > > I believe it

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

@lungs

> > were

> > > > contracting and jerking

> > >

> > > That's called a very strong reaction--!!

> > >

> > > 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.

> > >

> > > Word to the wise....find another infusion center, or ask for

home

> > > health care. It doesn't sound as though this center is very

> > > consienence of their patients' needs.

> > >

> > > ((Although I must say one other thing while on this topic of

> > infusion

> > > timing....some insurance carriers will not pay for nursing,

ect.

> > for

> > > over three hours time with ANY IVIG infusion--if you need to

go

> > > longer--the doctors' office may need to provide them with some

> sort

> > > of documentation to back-up the additional nursing charges--

> > although

> > > a documented bad reaction should definatly do the " trick " ))

> > >

> > > Here's an example of how a three hour, 30 gram infusion should

be

> > ran:

> > >

> > > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the next 30

> min.,

> > > then 200 ml/hr for the remainder of the infusion

> > >

> > > This is an average infusion--any problems with the infusion,

and

> > the

> > > rates should be lowered.

> > >

> > > I don't know what product you are on--But your IgA was low

normal

> (

> > > not too bad, really) but if it was Panglobulin--which contains

> 720

> > mg

> > > IgA---you could be having a hard time with the infusion

because

> of

> > > that fact--as well as the fact that it contains quite a bit of

> > > sucrose.....hard on the ole' renals in the long run.

> > >

> > > Some products are 5% solution, some are 10% solution--and the

10%

> > one

> > > would probaly help with your falling IgG rates by month end--

but

> > are

> > > more viscous--and can cause more thrombotic episodes( like

> > > phelbitises) so you have to weight the pros and the cons.

> > >

> > > Most IG products have a half-life of 21-28 days--so you IgG

could

> > > start to tank by months' end

> > >

> > > Consider trying Octagam ( by Octapharma--out of Austria) which

> has

> > a

> > > half-life of 40 days. May help keep your levels up for longer.

> > >

> > > >

> > > Alot 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.

> > >

> > > Most IVIG is pretty safe from the infectious disease stand

point--

> > > there has not been a recall in over 15 yrs in the USA---20 yrs

> with

> > > the Octagam in Germany--much better recall record than your

> average

> > > american automobile!!!

> > >

> > > Look at it this way: Yes, there is always the possiabilty of

> > > something new getting into the blood supply----but with a

> > suppressed

> > > immune response--you may contact these pathogens anyway...on

the

> > > streets of the city!!!

> > >

> > > Most infectious disease doctors use IVIG all the time---his

AIDS

> > > patients use the product often( if in need) so I would have to

> > guess

> > > that he is getting flack from the insurance companies ( as far

as

> > not

> > > wanting to order the IVIG for you) I don't believe that it's

> > anything

> > > to do with those of us who have Lyme being excluded ( as I

know

> > that

> > > he no longer takes any new lyme patients---so it would not

take

> > much

> > > to wonder if he was trying to " move along " his borrelia

patients

> > sent

> > > in by Harvey )but I really don't think that is the case with

> regard

> > > to the IVIG situation.

> > >

> > > Let it be known that I went to this doctor for a short time

while

> > > living in Texas.....and was intially impressed--but like

yourself

> (

> > > and many others)I, too--had one nightmare after

another.....and I

> > > finally left the practice--so I know what you are going though.

> > >

> > > That's why I had to stick my head up tonight......and offer up

> what

> > > asssistance that I can

> > >

> > > Take Care, Peg, and back-channel me when you can!!!!!

> > >

> > > Best,

> > > Celiene

> > >

> > > >

September 7, 2005

Wow. I wish you lived in America, what ARE You doing over there? -g

So that crap lives in your cells.

> > > > > > > Hello Peg,

> > > > > > >

> > > > > > > I recieved your e-mail back-channel on Tuesday( sent on

> > > > Friday),

> > > > > as

> > > > > > I

> > > > > > > was hosting company for the last two weeks---and did

not

> > > attend

> > > > > to

> > > > > > > my " computer needs " ......Anyway

> > > > > > >

> > > > > > > I'm quite familiar with IVIG, both through my own

> personal

> > > > usage

> > > > > (

> > > > > > I

> > > > > > > am panhypogammaglobulinemia--which means " ALL " my

> antibody

> > > > > classes

> > > > > > > are low, not just IgG )and through working with the

> product

> > > > > (PharmD)

> > > > > > >

> > > > > > > Your posting below is lenghty---so I am going to omit

> some

> > > of

> > > > > the

> > > > > > > conversation--and zero in an areas of which I may lend

> > > > > assistance:

> > > > > > >

> > > > > > > > I expressed

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

> lesions

> > on

> > > my

> > > > > > > > brainstem,

> > > > > > >

> > > > > > > On a professional level.....I have never heard this

> theory,

> > > but

> > > > > it

> > > > > > is

> > > > > > > well-known that borrelia can cause white matter

> > > > > hyperintensities,

> > > > > > as

> > > > > > > well as several other infectious agents that one with

> > immune

> > > > > > > supression could have come in contact with (

> > > > > Brucella,mycoplasmas,

> > > > > > > ect--Tony would be the better poster to answer that

> > > particiliar

> > > > > > > question---as microbiology isn't my speciality)

> > > > > > >

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

my

> > > > > > > > acitivty level at home increased.

> > > > > > >

> > > > > > > Not uncommon from someone with a depressed immune

> response.

> > > > Does

> > > > > > the

> > > > > > > IVIG help your pain levels???? Because in those TBD

> > > sufferers

> > > > > that

> > > > > > > deal with chronic perpherial neuropathies ( as I do) if

> has

> > > > been

> > > > > > > known to be a great help ( search Perpherial

> neuropathies

> > > and

> > > > > IVIG

> > > > > > on

> > > > > > > google scholar)

> > > > > > > >

> > > > > > > > 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

> > > > > > >

> > > > > > > As you well know, I am aware of who you are seeing in

> > > Houston (

> > > > > ID

> > > > > > > Doctor) and it sounds like you were seeing Gailen

> Marshall

> > > as

> > > > > your

> > > > > > > immunilogist--his move to Alabama has been a " pain in

> the

> > > arse "

> > > > > for

> > > > > > > all who have had to seek other assistance for their

> > > treatments.

> > > > > (He

> > > > > > is

> > > > > > > going to be at the Instuite in Alabama)

He

> is

> > > not

> > > > > a

> > > > > > > LLMD of any sort--so it is just fine to post his name

> here.

> > > > > > >

> > > > > > > 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.

> > > > > > >

> > > > > > > Now, I am not a fan of ole Joe the ID Doc.,( we are

not

> > > > talking

> > > > > > > about the famous Dr. B--just for future reference) but

> I'm

> > > > > suprised

> > > > > > > about this one---can I suggest an alternative reason

why

> > > this

> > > > > might

> > > > > > > be happening???

> > > > > > >

> > > > > > > I don't know who your insurance carrier is, but many of

> > them

> > > > > have

> > > > > > pre-

> > > > > > > set levels that the patient must be at to even be

> > considered

> > > > for

> > > > > > IVIG

> > > > > > > ( as it is about 6K for 30 grams) so ole Doc Joe may be

> > > waiting

> > > > > for

> > > > > > > your levels to drop down into your insurers'

> qualifications-

> > -

> > > > and

> > > > > > when

> > > > > > > they do--most doctors will treat with gamma if the need

> is

> > > > > there,

> > > > > > and

> > > > > > > if they are able to--as it is quite the money maker for

> > them

> > > (

> > > > > that

> > > > > > > is not an insinuation, nor sarcasam--it's just the way

> that

> > > it

> > > > > > > is....they did go thru 12+ yrs of schooling, you would

> have

> > > to

> > > > > > expect

> > > > > > > them to want to make some sort of money for all that

> > > education)

> > > > > > >

> > > > > > > Just another angle on what could be happening with that

> > > > scenerio-

> > > > > -

> > > > > > as

> > > > > > > Capitiolism rules everything in the USA.

> > > > > > >

> > > > > > > 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.

> > > > > > >

> > > > > > > Are they still using 25 grams, for three consecutive

> > days???

> > > (

> > > > > > total

> > > > > > > of 75 grams over a 72 hour period) That used to be the

> > > favorite

> > > > > > > protocal. A 25 gram bag will be just that--one bag---

are

> > > they

> > > > > > running

> > > > > > > fluids into you at the same time??? One bag could have

> been

> > > > > fluids,

> > > > > > > the other the IVIG ( fluids would run first, or

possibly

> at

> > > the

> > > > > > same

> > > > > > > time)

> > > > > > >

> > > > > > > I

> > > > > > > > didn't think it was possible as before one bag took

> three

> > > > > hours.

> > > > > > >

> > > > > > > That about the norm for dosages from 20-40 grams--three

> > > hours

> > > > > for

> > > > > > > most folks--but if you have any of the following

> reactions--

> > > the

> > > > > > > infusion rate is to be slowed by 1/2--or stopped till

> the

> > > > > reaction

> > > > > > > subsides:

> > > > > > >

> > > > > > > Back Ache

> > > > > > >

> > > > > > > Headache( this is even if you are being pre-medicated

> with

> > > > > benadyl,

> > > > > > > and motrin--as if you are not---anyone can be in for

one

> > hum-

> > > > > dinger

> > > > > > > of a headache)

> > > > > > >

> > > > > > > Chills

> > > > > > >

> > > > > > > Fever

> > > > > > >

> > > > > > > Hypotension( systolic<100 diastolic<65)

> > > > > > >

> > > > > > > ,

> > > > > > > > About thirty minutes into the process I

> > > > > > > > started yawning, really big and really dramatically.

I

> > > > > couldn't

> > > > > > > > stop.

> > > > > > >

> > > > > > > IVIG is known to cause that under normal conditions--

and

> > the

> > > > > > benadryl-

> > > > > > > -even if you handle it well---causes yawning.

> > > > > > >

> > > > > > > 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

> > > > > > >

> > > > > > > They should have stopped the infusion and contacted the

> > > doctor(

> > > > > > jack-

> > > > > > > arses) as this is a reaction--who was the attending RN

> at

> > > that

> > > > > > > clinic?? And where were they??

> > > > > > >

> > > > > > > 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.

> > > > > > >

> > > > > > > Maybe you are tolerant of PO form of benadryl--but they

> > main-

> > > > > lined

> > > > > > > you with the substance( placed it right into the IV

> line)---

> > > and

> > > > > > that

> > > > > > > will stop the reaction--and knock a walrus out--but if

> you

> > > were

> > > > > > > having the reaction that you described above/below--

they

> > > really

> > > > > had

> > > > > > > no choice in the matter.

> > > > > > >

> > > > > > > I believe it

> > > > > > > > was from the lack of oxygen as I could feel my

muscles

> > > @lungs

> > > > > > were

> > > > > > > > contracting and jerking

> > > > > > >

> > > > > > > That's called a very strong reaction--!!

> > > > > > >

> > > > > > > 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.

> > > > > > >

> > > > > > > Word to the wise....find another infusion center, or

ask

> > for

> > > > > home

> > > > > > > health care. It doesn't sound as though this center is

> very

> > > > > > > consienence of their patients' needs.

> > > > > > >

> > > > > > > ((Although I must say one other thing while on this

> topic

> > of

> > > > > > infusion

> > > > > > > timing....some insurance carriers will not pay for

> nursing,

> > > > ect.

> > > > > > for

> > > > > > > over three hours time with ANY IVIG infusion--if you

> need

> > to

> > > go

> > > > > > > longer--the doctors' office may need to provide them

> with

> > > some

> > > > > sort

> > > > > > > of documentation to back-up the additional nursing

> charges--

> > > > > > although

> > > > > > > a documented bad reaction should definatly do

> the " trick " ))

> > > > > > >

> > > > > > > Here's an example of how a three hour, 30 gram infusion

> > > should

> > > > > be

> > > > > > ran:

> > > > > > >

> > > > > > > 50ml/hr for the 1st 30 minutes, then 100ml/hr for the

> next

> > > 30

> > > > > min.,

> > > > > > > then 200 ml/hr for the remainder of the infusion

> > > > > > >

> > > > > > > This is an average infusion--any problems with the

> > infusion,

> > > > and

> > > > > > the

> > > > > > > rates should be lowered.

> > > > > > >

> > > > > > > I don't know what product you are on--But your IgA was

> low

> > > > > normal (

> > > > > > > not too bad, really) but if it was Panglobulin--which

> > > contains

> > > > > 720

> > > > > > mg

> > > > > > > IgA---you could be having a hard time with the infusion

> > > because

> > > > > of

> > > > > > > that fact--as well as the fact that it contains quite a

> bit

> > > of

> > > > > > > sucrose.....hard on the ole' renals in the long run.

> > > > > > >

> > > > > > > Some products are 5% solution, some are 10% solution--

> and

> > > the

> > > > > 10%

> > > > > > one

> > > > > > > would probaly help with your falling IgG rates by month

> end-

> > -

> > > > but

> > > > > > are

> > > > > > > more viscous--and can cause more thrombotic episodes(

> like

> > > > > > > phelbitises) so you have to weight the pros and the

cons.

> > > > > > >

> > > > > > > Most IG products have a half-life of 21-28 days--so you

> IgG

> > > > > could

> > > > > > > start to tank by months' end

> > > > > > >

> > > > > > > Consider trying Octagam ( by Octapharma--out of

Austria)

> > > which

> > > > > has

> > > > > > a

> > > > > > > half-life of 40 days. May help keep your levels up for

> > > longer.

> > > > > > >

> > > > > > > >

> > > > > > > Alot 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.

> > > > > > >

> > > > > > > Most IVIG is pretty safe from the infectious disease

> stand

> > > > point-

> > > > > -

> > > > > > > there has not been a recall in over 15 yrs in the USA---

> 20

> > > yrs

> > > > > with

> > > > > > > the Octagam in Germany--much better recall record than

> your

> > > > > average

> > > > > > > american automobile!!!

> > > > > > >

> > > > > > > Look at it this way: Yes, there is always the

> possiabilty

> > of

> > > > > > > something new getting into the blood supply----but with

> a

> > > > > > suppressed

> > > > > > > immune response--you may contact these pathogens

> > anyway...on

> > > > the

> > > > > > > streets of the city!!!

> > > > > > >

> > > > > > > Most infectious disease doctors use IVIG all the time---

> his

> > > > AIDS

> > > > > > > patients use the product often( if in need) so I would

> have

> > > to

> > > > > > guess

> > > > > > > that he is getting flack from the insurance companies (

> as

> > > far

> > > > > as

> > > > > > not

> > > > > > > wanting to order the IVIG for you) I don't believe that

> > it's

> > > > > > anything

> > > > > > > to do with those of us who have Lyme being excluded (

as

> I

> > > know

> > > > > > that

> > > > > > > he no longer takes any new lyme patients---so it would

> not

> > > take

> > > > > > much

> > > > > > > to wonder if he was trying to " move along " his borrelia

> > > > patients

> > > > > > sent

> > > > > > > in by Harvey )but I really don't think that is the case

> > with

> > > > > regard

> > > > > > > to the IVIG situation.

> > > > > > >

> > > > > > > Let it be known that I went to this doctor for a short

> time

> > > > > while

> > > > > > > living in Texas.....and was intially impressed--but

like

> > > > yourself

> > > > > (

> > > > > > > and many others)I, too--had one nightmare after

> > > another.....and

> > > > > I

> > > > > > > finally left the practice--so I know what you are going

> > > though.

> > > > > > >

> > > > > > > That's why I had to stick my head up tonight......and

> offer

> > > up

> > > > > what

> > > > > > > asssistance that I can

> > > > > > >

> > > > > > > Take Care, Peg, and back-channel me when you can!!!!!

> > > > > > >

> > > > > > > Best,

> > > > > > > Celiene

> > > > > > >

> > > > > > > >

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Re: Recent experience with IVIG infusions--An important Reply To Peg

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