Re: IVIG update

[Guest guest]

Hey Lanelle,

You might want to try some betadine nasal rinses. This is what

Stanford suggested for a local friend who couldn't get rid of a

sinus infection. If you're using a manual syringe type delivery you

need to keep it sterile, and you'll want to add a touch of salt to

keep it from burning.

penny

> Greetings,I' doing really poorly right now, but wanted to let you

> know the outcome of my IVIG saga.

> I want to thank everyone for their immense support and suggestions

> on my IVIG infusions. Thank you and Sue for your timely

email.

> I really needed it. You can't imagine the comfort of finding

> something in your email inbox besides penal enlargement ads.

>

> I saw the doctor last week and he has changed infusion companies

to

> one agreeable to administer my IVIG in six hours instead of like

the

> last company who insisted that despite my extreme reaction, I

should

> be able to receive the dose in three hours.

>

> I really find some personnel and companies exhibit an arrogance

that

> should be taught to groups of insecure individuals.

> This infusion company felt it was irrelevant that my lung muscles

> were spasming so severely I could not breathe. They just kept

> pumping steriods into the IV line so that they could continue

their

> rate of flow to their liking.

>

> So this new company has agreed upfront to the longer rate of

> delivery, the only problem is we have to go the whole route

through

> insurance approval again. I'm confident it will get through, but

> being that it took three months with the last submission.

> I still find it incomprehensable how quickly rescue efforts can

> spring into action when there is a few beached whales on off some

> shore, but to get a person life saving immune globulin, it

> practically takes an act of congress.

> I guess until you've been there, you just can't be expected to

> understand the profound irony of that comparrison.

>

> All week I've been fighting sinus infection, digging through my

> arsenal of antibiotics trying to think straight when every system

in

> my body is on vacation. ID doc prescribed 100mg minocycline twice

a

> day, but for what I'm not sure. I had to rescedule my gum surgery

> because the surgeon wants to do it right after a full load of

IVIG.

> He directly contributed my periodontal disease to low IgG.

>

> Normal IgG range is approx 700-?? . I wish that this ID doctor

> wouldn't be so insistant that the gamma dose prescribed only

bring

> me to the low end of this range. After my last IVIG, I immediately

> felt better the next day , but it only lasted approx 10 days

before

> I rapidly started the decent to bottom out again. @ three weeks

> blood test after infusion I was in the 600 range already and at

six

> weeks I was once again @450

> Upon receiving my second infusion I barely got any of the gamma in

> me before the reaction started this time even more violently than

> the first time. I keep thinking about the references being made

to

> low IgA and yet whenever I ask anyone, it is indicated that there

> isn't any remedy for low IgA. That it is merely a measurement.

Silly

> me, I keep thinking that if you can shore up areas that are low,

yet

> not completely depleted, then you might be able to avoid complete

> disaster. But I am constantly reminded that modern medicine

doesn't

> have anything for a failing immunity, just for a failed one. Sad.

> So, here I am waiting for the go ahead, feeling like my ass is

> dragging on the cold hard cement of beurocracy.

> But at least it is dragging ...forward.

>

> Peg

[Guest guest]

Hi there, I'm glad to hear you got a different infusion company.

Just FYI, I take sometimes 2 hours to do just five grams. I drip it

so slowly you could see geologic time change while I drip it . I

read a book or talk to folks.

Also on another note, is I really react if its not gamunex. Yesterday

they only had Gammagard there (at my doc's office) as she'd been away

for 3 weeks. I was desperate as I hadn't had it for 3 weeks,

therefore, and had had bad PMS and really wanted it. The sugar and

salt solution they use, plus the solvents, I react to. I get

extremely thirsty and hungry while dripping it, and I also sometimes

get wheezing, and even odd little chest pains. Once after using

Gammagard I had significant chest pain that lasted for 24 hours

(significant to me anyway) and wheezing for weeks. The soreness and

chest wall pain lasted for weeks too, and I had the whole thing

checked out by docs iwth xrays echocardigoram and discussion of the

rare possibility of thrombosis, but it appeared totally unlikely and

did go away.

But with gamunex, which comes refrigerated, already in solution, has

no preservatives, no sugar, no salt, I really do pretty well.

So just realize that you may have to try different IVIG's until you

find one you don't react to.

Also, its HUGELY important to hydrate yourself. People can minimize a

lot of reactions that way. Remember, its a big moleucle--a protein--

and viscous. So drink a lot of water before during and after, and to

really protect yourself, have a sterile saline IV first...let that

drip in for half an hour, so you are really well hydrated, then add

the IVIG.

Too bad on THEM if they think you are a HASSLE or something. You know

what, bring them flowers, as I brought my doctor flowers as a thank

you. Bring them beautiful flowers, and come in with a big smile and

say, you know, I had a bad time before and what I'd like to do is

this: I've drunk a lot of water because I hear that helps, and I'd

also like a saline or sterile water IV to really hydrate me, and then

drip real slow...is tha tokay?

My HMO doc...he agreed to do a blood smear and have the pathologist

at the hospital look at my blood. You can imagine he was not happy I

forced his hand to do this (after I showed him my positive Igenex

FISH test that my holistic doc did for me). I also really pushed the

limit todya, which he doesn't know, by EMAILING the head pathologist

at the hospital and telling her about my case, and apologizing for

breaking protocol but requesting that she herself look at my blood.

I'm going to leave him a bottle of white wine and a thank you note

and a confession of what I did, and a request that he also request

she look at it.

That's the best I can do. Hopefully it'll work.

Remember, they are not on your side. They have to be won over. Also,

medicine is just not a fun profession for most o fthem anymore.

They're overworked and they're overmanaged by annoying insurance and

managed care companies.

[Guest guest]

Thanks so much Penny, especially for the hint about adding a pinch

of salt. It has settled in my throat and can hardly swollow.

called and told me about rinsing with hydrogen peroxide, which I had

forgotten. I have been putting a drop of hydrogen peroxide in my

ears every day or two as I get ear infections easily and also get

thrush in my ears. He was commenting about it keeping the thrush off

the tongue when I realized that I have not had that problem since

using this great new tooth oil, which I am writing on a separate

post so many will get to hear my news.

Rarely do I ever get to talk about something that works, almost feel

like surely the other shoe will drop.

Is there any ratio on the betadine nasal rinses?

Wish I had my mothers old rememdy of kerosene and sugar about now.

Killer homeremedy. for the bugs that is.

Peg Lanelle

> > Greetings,I' doing really poorly right now, but wanted to let

you

> > know the outcome of my IVIG saga.

> > I want to thank everyone for their immense support and

suggestions

> > on my IVIG infusions. Thank you and Sue for your timely

> email.

> > I really needed it. You can't imagine the comfort of finding

> > something in your email inbox besides penal enlargement ads.

> >

> > I saw the doctor last week and he has changed infusion companies

> to

> > one agreeable to administer my IVIG in six hours instead of like

> the

> > last company who insisted that despite my extreme reaction, I

> should

> > be able to receive the dose in three hours.

> >

> > I really find some personnel and companies exhibit an arrogance

> that

> > should be taught to groups of insecure individuals.

> > This infusion company felt it was irrelevant that my lung

muscles

> > were spasming so severely I could not breathe. They just kept

> > pumping steriods into the IV line so that they could continue

> their

> > rate of flow to their liking.

> >

> > So this new company has agreed upfront to the longer rate of

> > delivery, the only problem is we have to go the whole route

> through

> > insurance approval again. I'm confident it will get through, but

> > being that it took three months with the last submission.

> > I still find it incomprehensable how quickly rescue efforts can

> > spring into action when there is a few beached whales on off

some

> > shore, but to get a person life saving immune globulin, it

> > practically takes an act of congress.

> > I guess until you've been there, you just can't be expected to

> > understand the profound irony of that comparrison.

> >

> > All week I've been fighting sinus infection, digging through my

> > arsenal of antibiotics trying to think straight when every

system

> in

> > my body is on vacation. ID doc prescribed 100mg minocycline

twice

> a

> > day, but for what I'm not sure. I had to rescedule my gum

surgery

> > because the surgeon wants to do it right after a full load of

> IVIG.

> > He directly contributed my periodontal disease to low IgG.

> >

> > Normal IgG range is approx 700-?? . I wish that this ID doctor

> > wouldn't be so insistant that the gamma dose prescribed only

> bring

> > me to the low end of this range. After my last IVIG, I

immediately

> > felt better the next day , but it only lasted approx 10 days

> before

> > I rapidly started the decent to bottom out again. @ three weeks

> > blood test after infusion I was in the 600 range already and at

> six

> > weeks I was once again @450

> > Upon receiving my second infusion I barely got any of the gamma

in

> > me before the reaction started this time even more violently

than

> > the first time. I keep thinking about the references being made

> to

> > low IgA and yet whenever I ask anyone, it is indicated that

there

> > isn't any remedy for low IgA. That it is merely a measurement.

> Silly

> > me, I keep thinking that if you can shore up areas that are low,

> yet

> > not completely depleted, then you might be able to avoid

complete

> > disaster. But I am constantly reminded that modern medicine

> doesn't

> > have anything for a failing immunity, just for a failed one.

Sad.

> > So, here I am waiting for the go ahead, feeling like my ass is

> > dragging on the cold hard cement of beurocracy.

> > But at least it is dragging ...forward.

> >

> > Peg

[Guest guest]

Jill or is it Jen? You really cannot know how helpful you have

been. At this moment I can't remember which gamma it is. The gamma

they gave me the first time I could tell the difference in my

immunity in three days and it was wonderful, just the delivery was

hell. So after two times and the infusion company wasn't going to

budge, the doctor was actually nice about moving to the other one. I

contacted them because I wantd to know if they had somewhere i could

lie down and they said no. I told them that I didn't know if I could

sit up for six hours. I know that sounds pathetic, but just the

truth. They were really nice and said that if I could hang in there

for two visits, so they would have necessary stuff incase I had a

reaction. Then they would come to my home thereafter that. I thought

that was a viable compromise. I noticed that this ID duc upped my

dose of minocycline and also he upped the time on the IVIG from six

weeks to four weeks after seeing me last week. IT has taken nine

months for this guy to start believing in me. I've only hung in

there with him becasue he is the top ID duc in town and my pain

doctor told me to just grin and bear it and to use him for all he

has got, and then get whatever else I needed elsewhere. She

said , " When you are as sick as you are, you need to just start

taking and don't worry about hurting anyone's feelings, she said

their ego's were to big to get hurt feelings. I really like my pain

doctor. She helps me survive all the other jerks. I am going to

email you and also if you could email me at my google account . It

is...... needamiracle at gmail dot com.......got that? I'm really

wiped for now. Three postings is just about my limit. Although there

is always so much more that I want to try and do to help. I want to

write about my tooth oil too. better go Thank you so so very much

about the tips on the hydration too.

Peg

> Hi there, I'm glad to hear you got a different infusion company.

> Just FYI, I take sometimes 2 hours to do just five grams. I drip

it

> so slowly you could see geologic time change while I drip it . I

> read a book or talk to folks.

>

> Also on another note, is I really react if its not gamunex.

Yesterday

> they only had Gammagard there (at my doc's office) as she'd been

away

> for 3 weeks. I was desperate as I hadn't had it for 3 weeks,

> therefore, and had had bad PMS and really wanted it. The sugar and

> salt solution they use, plus the solvents, I react to. I get

> extremely thirsty and hungry while dripping it, and I also

sometimes

> get wheezing, and even odd little chest pains. Once after using

> Gammagard I had significant chest pain that lasted for 24 hours

> (significant to me anyway) and wheezing for weeks. The soreness

and

> chest wall pain lasted for weeks too, and I had the whole thing

> checked out by docs iwth xrays echocardigoram and discussion of

the

> rare possibility of thrombosis, but it appeared totally unlikely

and

> did go away.

>

> But with gamunex, which comes refrigerated, already in solution,

has

> no preservatives, no sugar, no salt, I really do pretty well.

>

> So just realize that you may have to try different IVIG's until

you

> find one you don't react to.

>

> Also, its HUGELY important to hydrate yourself. People can

minimize a

> lot of reactions that way. Remember, its a big moleucle--a protein-

-

> and viscous. So drink a lot of water before during and after, and

to

> really protect yourself, have a sterile saline IV first...let that

> drip in for half an hour, so you are really well hydrated, then

add

> the IVIG.

>

> Too bad on THEM if they think you are a HASSLE or something. You

know

> what, bring them flowers, as I brought my doctor flowers as a

thank

> you. Bring them beautiful flowers, and come in with a big smile

and

> say, you know, I had a bad time before and what I'd like to do is

> this: I've drunk a lot of water because I hear that helps, and I'd

> also like a saline or sterile water IV to really hydrate me, and

then

> drip real slow...is tha tokay?

>

> My HMO doc...he agreed to do a blood smear and have the

pathologist

> at the hospital look at my blood. You can imagine he was not happy

I

> forced his hand to do this (after I showed him my positive Igenex

> FISH test that my holistic doc did for me). I also really pushed

the

> limit todya, which he doesn't know, by EMAILING the head

pathologist

> at the hospital and telling her about my case, and apologizing for

> breaking protocol but requesting that she herself look at my blood.

>

> I'm going to leave him a bottle of white wine and a thank you note

> and a confession of what I did, and a request that he also request

> she look at it.

>

> That's the best I can do. Hopefully it'll work.

>

> Remember, they are not on your side. They have to be won over.

Also,

> medicine is just not a fun profession for most o fthem anymore.

> They're overworked and they're overmanaged by annoying insurance

and

> managed care companies.

[Guest guest]

Jill

Very good post, and keep this up.You've gotta take things into your

own hands and use the backdoor more often. I learned my doctor is

OK with everything as long as I keep it smooth, short and sweet with

him.They KNOW there's a big gap between what's wrong and what

treating a symptom is all about. Actually many have this GUILT

written all over there face when they come up against a smart

patient.

> Hi there, I'm glad to hear you got a different infusion company.

> Just FYI, I take sometimes 2 hours to do just five grams. I drip

it

> so slowly you could see geologic time change while I drip it . I

> read a book or talk to folks.

>

> Also on another note, is I really react if its not gamunex.

Yesterday

> they only had Gammagard there (at my doc's office) as she'd been

away

> for 3 weeks. I was desperate as I hadn't had it for 3 weeks,

> therefore, and had had bad PMS and really wanted it. The sugar and

> salt solution they use, plus the solvents, I react to. I get

> extremely thirsty and hungry while dripping it, and I also

sometimes

> get wheezing, and even odd little chest pains. Once after using

> Gammagard I had significant chest pain that lasted for 24 hours

> (significant to me anyway) and wheezing for weeks. The soreness

and

> chest wall pain lasted for weeks too, and I had the whole thing

> checked out by docs iwth xrays echocardigoram and discussion of

the

> rare possibility of thrombosis, but it appeared totally unlikely

and

> did go away.

>

> But with gamunex, which comes refrigerated, already in solution,

has

> no preservatives, no sugar, no salt, I really do pretty well.

>

> So just realize that you may have to try different IVIG's until

you

> find one you don't react to.

>

> Also, its HUGELY important to hydrate yourself. People can

minimize a

> lot of reactions that way. Remember, its a big moleucle--a protein-

-

> and viscous. So drink a lot of water before during and after, and

to

> really protect yourself, have a sterile saline IV first...let that

> drip in for half an hour, so you are really well hydrated, then

add

> the IVIG.

>

> Too bad on THEM if they think you are a HASSLE or something. You

know

> what, bring them flowers, as I brought my doctor flowers as a

thank

> you. Bring them beautiful flowers, and come in with a big smile

and

> say, you know, I had a bad time before and what I'd like to do is

> this: I've drunk a lot of water because I hear that helps, and I'd

> also like a saline or sterile water IV to really hydrate me, and

then

> drip real slow...is tha tokay?

>

> My HMO doc...he agreed to do a blood smear and have the

pathologist

> at the hospital look at my blood. You can imagine he was not happy

I

> forced his hand to do this (after I showed him my positive Igenex

> FISH test that my holistic doc did for me). I also really pushed

the

> limit todya, which he doesn't know, by EMAILING the head

pathologist

> at the hospital and telling her about my case, and apologizing for

> breaking protocol but requesting that she herself look at my blood.

>

> I'm going to leave him a bottle of white wine and a thank you note

> and a confession of what I did, and a request that he also request

> she look at it.

>

> That's the best I can do. Hopefully it'll work.

>

> Remember, they are not on your side. They have to be won over.

Also,

> medicine is just not a fun profession for most o fthem anymore.

> They're overworked and they're overmanaged by annoying insurance

and

> managed care companies.

[Guest guest]

Shoot, I posted before how much. I just bought betadine myself but

haven't gotten around to doing it. I think the ratio is 1/2 tsp

betadine, to 2 pints (quart) of saline? Something like that. I'll

probaly start with that and increase to as much as I can tolerate.

I'd be sure to use purified water, too.

> > > Greetings,I' doing really poorly right now, but wanted to let

> you

> > > know the outcome of my IVIG saga.

> > > I want to thank everyone for their immense support and

> suggestions

> > > on my IVIG infusions. Thank you and Sue for your timely

> > email.

> > > I really needed it. You can't imagine the comfort of finding

> > > something in your email inbox besides penal enlargement ads.

> > >

> > > I saw the doctor last week and he has changed infusion

companies

> > to

> > > one agreeable to administer my IVIG in six hours instead of

like

> > the

> > > last company who insisted that despite my extreme reaction, I

> > should

> > > be able to receive the dose in three hours.

> > >

> > > I really find some personnel and companies exhibit an

arrogance

> > that

> > > should be taught to groups of insecure individuals.

> > > This infusion company felt it was irrelevant that my lung

> muscles

> > > were spasming so severely I could not breathe. They just kept

> > > pumping steriods into the IV line so that they could continue

> > their

> > > rate of flow to their liking.

> > >

> > > So this new company has agreed upfront to the longer rate of

> > > delivery, the only problem is we have to go the whole route

> > through

> > > insurance approval again. I'm confident it will get through,

but

> > > being that it took three months with the last submission.

> > > I still find it incomprehensable how quickly rescue efforts

can

> > > spring into action when there is a few beached whales on off

> some

> > > shore, but to get a person life saving immune globulin, it

> > > practically takes an act of congress.

> > > I guess until you've been there, you just can't be expected to

> > > understand the profound irony of that comparrison.

> > >

> > > All week I've been fighting sinus infection, digging through

my

> > > arsenal of antibiotics trying to think straight when every

> system

> > in

> > > my body is on vacation. ID doc prescribed 100mg minocycline

> twice

> > a

> > > day, but for what I'm not sure. I had to rescedule my gum

> surgery

> > > because the surgeon wants to do it right after a full load of

> > IVIG.

> > > He directly contributed my periodontal disease to low IgG.

> > >

> > > Normal IgG range is approx 700-?? . I wish that this ID doctor

> > > wouldn't be so insistant that the gamma dose prescribed only

> > bring

> > > me to the low end of this range. After my last IVIG, I

> immediately

> > > felt better the next day , but it only lasted approx 10 days

> > before

> > > I rapidly started the decent to bottom out again. @ three

weeks

> > > blood test after infusion I was in the 600 range already and

at

> > six

> > > weeks I was once again @450

> > > Upon receiving my second infusion I barely got any of the

gamma

> in

> > > me before the reaction started this time even more violently

> than

> > > the first time. I keep thinking about the references being

made

> > to

> > > low IgA and yet whenever I ask anyone, it is indicated that

> there

> > > isn't any remedy for low IgA. That it is merely a measurement.

> > Silly

> > > me, I keep thinking that if you can shore up areas that are

low,

> > yet

> > > not completely depleted, then you might be able to avoid

> complete

> > > disaster. But I am constantly reminded that modern medicine

> > doesn't

> > > have anything for a failing immunity, just for a failed one.

> Sad.

> > > So, here I am waiting for the go ahead, feeling like my ass is

> > > dragging on the cold hard cement of beurocracy.

> > > But at least it is dragging ...forward.

> > >

> > > Peg

[Guest guest]

Thanx Tony. The head of pathology emailed me back that indeed she

would personally look at my blood! I was so grateful. She also noted

that to find babesia can take a couple different samples. I already

have the positive RNA test, and clearly, that tickbite 5 years ago so

decimated me, that I had both lyme and babesia in it. But anyway...

btw, I still would like to do nasal swabs and see what is found...I

think it makes complete sense that if you're colonized, you're

colonized, period...so you don't have to biopsy bone to find out

what's in you...but I haven't even ordered those special swabs...I am

always overwhelmed trying to balance working, seeing doctors, and my

health. Right now I'm doing more IV vitamins/minerals esp. magnesium

and glutathione...and it has been helping with sleep, but last week I

really slept...Monday and Tuesday I slept a LOT...and last night

too...weird...its hard to juggle everything and nothing I want to get

done, gets done on time...I am also really glad to report that my HMO

covers an immunologist in the Bronx who comes highly reocmmended by a

few lyme patients and who is a good advocate for lyme patients and

does special testing.

I ended up not bringing wine for the doc tho...I thought about it and

thought, eh, I don't need to. I got there though, and on the table

was the current issue of a science mag with my article in it, so I

handed it to the receptionist and said, hey, this is my article, show

it to my doc, will you? And went upstairs to get my blood drawn and

gave the email from the pathologist to the RN, who was very nice

about it.

> > Hi there, I'm glad to hear you got a different infusion company.

> > Just FYI, I take sometimes 2 hours to do just five grams. I drip

> it

> > so slowly you could see geologic time change while I drip it .

I

> > read a book or talk to folks.

> >

> > Also on another note, is I really react if its not gamunex.

> Yesterday

> > they only had Gammagard there (at my doc's office) as she'd been

> away

> > for 3 weeks. I was desperate as I hadn't had it for 3 weeks,

> > therefore, and had had bad PMS and really wanted it. The sugar

and

> > salt solution they use, plus the solvents, I react to. I get

> > extremely thirsty and hungry while dripping it, and I also

> sometimes

> > get wheezing, and even odd little chest pains. Once after using

> > Gammagard I had significant chest pain that lasted for 24 hours

> > (significant to me anyway) and wheezing for weeks. The soreness

> and

> > chest wall pain lasted for weeks too, and I had the whole thing

> > checked out by docs iwth xrays echocardigoram and discussion of

> the

> > rare possibility of thrombosis, but it appeared totally unlikely

> and

> > did go away.

> >

> > But with gamunex, which comes refrigerated, already in solution,

> has

> > no preservatives, no sugar, no salt, I really do pretty well.

> >

> > So just realize that you may have to try different IVIG's until

> you

> > find one you don't react to.

> >

> > Also, its HUGELY important to hydrate yourself. People can

> minimize a

> > lot of reactions that way. Remember, its a big moleucle--a

protein-

> -

> > and viscous. So drink a lot of water before during and after, and

> to

> > really protect yourself, have a sterile saline IV first...let

that

> > drip in for half an hour, so you are really well hydrated, then

> add

> > the IVIG.

> >

> > Too bad on THEM if they think you are a HASSLE or something. You

> know

> > what, bring them flowers, as I brought my doctor flowers as a

> thank

> > you. Bring them beautiful flowers, and come in with a big smile

> and

> > say, you know, I had a bad time before and what I'd like to do is

> > this: I've drunk a lot of water because I hear that helps, and

I'd

> > also like a saline or sterile water IV to really hydrate me, and

> then

> > drip real slow...is tha tokay?

> >

> > My HMO doc...he agreed to do a blood smear and have the

> pathologist

> > at the hospital look at my blood. You can imagine he was not

happy

> I

> > forced his hand to do this (after I showed him my positive Igenex

> > FISH test that my holistic doc did for me). I also really pushed

> the

> > limit todya, which he doesn't know, by EMAILING the head

> pathologist

> > at the hospital and telling her about my case, and apologizing

for

> > breaking protocol but requesting that she herself look at my

blood.

> >

> > I'm going to leave him a bottle of white wine and a thank you

note

> > and a confession of what I did, and a request that he also

request

> > she look at it.

> >

> > That's the best I can do. Hopefully it'll work.

> >

> > Remember, they are not on your side. They have to be won over.

> Also,

> > medicine is just not a fun profession for most o fthem anymore.

> > They're overworked and they're overmanaged by annoying insurance

> and

> > managed care companies.

[Guest guest]

Jill

That's it, keep up the good work. I also like visiting doctors in

the bronx part of town, way beyond the poofters in the piano

clinics.Keep this person on side(pathologist) and respect they are

generally busy and don't give them anything to read that's longer

than a line.Keep things sweet, and all you can do is win my dear.You

get people all over the forums taking in telephone directories of

information to doctors and specialists, and these guys don't even

read the cover.I go in with a pictures worth a thousand words(red

blood cells parasitized) or inflammation and how most therapies fall

into this- try fix the inflammation by tackling the infections

causing it... stuff...

instantly respected science is alway's good science.. those elisa's

and inconclusives don't win votes in doctors offices nor IMO.The

pathologists all love the challenges and when you have 10 staff at

the lab they all look and get excited when a hard to find parasite

is exposed.There like kids in a lolly shop.

cheers tony

> > > Hi there, I'm glad to hear you got a different infusion

company.

> > > Just FYI, I take sometimes 2 hours to do just five grams. I

drip

> > it

> > > so slowly you could see geologic time change while I drip

it .

> I

> > > read a book or talk to folks.

> > >

> > > Also on another note, is I really react if its not gamunex.

> > Yesterday

> > > they only had Gammagard there (at my doc's office) as she'd

been

> > away

> > > for 3 weeks. I was desperate as I hadn't had it for 3 weeks,

> > > therefore, and had had bad PMS and really wanted it. The sugar

> and

> > > salt solution they use, plus the solvents, I react to. I get

> > > extremely thirsty and hungry while dripping it, and I also

> > sometimes

> > > get wheezing, and even odd little chest pains. Once after

using

> > > Gammagard I had significant chest pain that lasted for 24

hours

> > > (significant to me anyway) and wheezing for weeks. The

soreness

> > and

> > > chest wall pain lasted for weeks too, and I had the whole

thing

> > > checked out by docs iwth xrays echocardigoram and discussion

of

> > the

> > > rare possibility of thrombosis, but it appeared totally

unlikely

> > and

> > > did go away.

> > >

> > > But with gamunex, which comes refrigerated, already in

solution,

> > has

> > > no preservatives, no sugar, no salt, I really do pretty well.

> > >

> > > So just realize that you may have to try different IVIG's

until

> > you

> > > find one you don't react to.

> > >

> > > Also, its HUGELY important to hydrate yourself. People can

> > minimize a

> > > lot of reactions that way. Remember, its a big moleucle--a

> protein-

> > -

> > > and viscous. So drink a lot of water before during and after,

and

> > to

> > > really protect yourself, have a sterile saline IV first...let

> that

> > > drip in for half an hour, so you are really well hydrated,

then

> > add

> > > the IVIG.

> > >

> > > Too bad on THEM if they think you are a HASSLE or something.

You

> > know

> > > what, bring them flowers, as I brought my doctor flowers as a

> > thank

> > > you. Bring them beautiful flowers, and come in with a big

smile

> > and

> > > say, you know, I had a bad time before and what I'd like to do

is

> > > this: I've drunk a lot of water because I hear that helps, and

> I'd

> > > also like a saline or sterile water IV to really hydrate me,

and

> > then

> > > drip real slow...is tha tokay?

> > >

> > > My HMO doc...he agreed to do a blood smear and have the

> > pathologist

> > > at the hospital look at my blood. You can imagine he was not

> happy

> > I

> > > forced his hand to do this (after I showed him my positive

Igenex

> > > FISH test that my holistic doc did for me). I also really

pushed

> > the

> > > limit todya, which he doesn't know, by EMAILING the head

> > pathologist

> > > at the hospital and telling her about my case, and apologizing

> for

> > > breaking protocol but requesting that she herself look at my

> blood.

> > >

> > > I'm going to leave him a bottle of white wine and a thank you

> note

> > > and a confession of what I did, and a request that he also

> request

> > > she look at it.

> > >

> > > That's the best I can do. Hopefully it'll work.

> > >

> > > Remember, they are not on your side. They have to be won over.

> > Also,

> > > medicine is just not a fun profession for most o fthem

anymore.

> > > They're overworked and they're overmanaged by annoying

insurance

> > and

> > > managed care companies.