Re: Re: auto-immune AND IVIG'S

[Guest guest]

My LLMD, a neurologist, has published on use of IVIG for Lyme patients. He told

me his research and experience have shown that it helps with peripheral

neuropathy, especially the burning sensations. He did not recommend it for

other Lyme symptoms even those symptoms attributed to other types of neuropathy.

-

[ ] Re: auto-immune AND IVIG'S

> The treatment they are all suggesting is called IVIG, which is >pooled blood

from thousands of donors. This treatment is used in >autoimmune diseases, most

notably CIDP

Hi Kate,

Id talk to a few more lymies, experts etc before the IVIG's. I had Lyme for a

long time before diagnosed as well with auto immune reactions..And what was my

first treatment .. 4 IVIG's !!

IVIG's essentially are immune factors from so many different people hoping to

give our immune system a boost. It worked for my x lyme doc whom had/has Lyme,

helped in the sense of symptoms. But, as Ive read mens immune systems are not as

strong/reactionary as females, so it would make sense theyd be less likely to

develop Auto immune disease.

But, it made me worse .. and logically, if a persons immune system is over

reactive, how is bombarding them with all sorts of antigens going to help them.

We Build immunity to things we are exposed to normally and thats what IVIG is ..

except from a large pool of donors. We get those immune responsive. Not to

mention all the things they dont/cant screen for at all levels. Getting bombared

by a hord of immune reactive cells made me very ill. Unless there is something I

dont understand, it doesnt make sense unless a person has not developed to the

stage of Auto Immune Disease.

We all want to trust and think we couldnt possibly get any worse because we

feel soooooooo bad. But, we can and do get worse to the point of being bed

bound, even death from thick blood causing heart attacks etc. I went through all

this since 99 .. and am just trying to control the worst symptoms.

Please get to understand the specific cases IVIG has helped before preceeding.

Again, it made me much worse. Just questioning, I just dont want people to get

sicker through not well thought out treatment.

[Guest guest]

and Cincin, I am burning 24/7, and it has gotten so severe since stopping

IV Rocephin 3 weeks ago. When I was on Rocephin, after a month on it, the

burning was about 80% better. I was happy; I could live with that even. But I

can't live forever with the way it is now. Something's got to give.

I'm looking at IVIG, I'm not jumping at the moment. But so far, 3 neurologists

and 1 LLMD have recommended it. I don't like the risks associated with it, even

though they are minimal. And there is a subcutaneous way to do it now, which

greatly reduces some of the risks.

In the meantime, I'm looking at everything that could help.

Thanks for all the comments!

Re: [ ] Re: auto-immune AND IVIG'S

My LLMD, a neurologist, has published on use of IVIG for Lyme patients. He told

me his research and experience have shown that it helps with peripheral

neuropathy, especially the burning sensations. He did not recommend it for other

Lyme symptoms even those symptoms attributed to other types of neuropathy.

-

[ ] Re: auto-immune AND IVIG'S

> The treatment they are all suggesting is called IVIG, which is >pooled blood

from thousands of donors. This treatment is used in >autoimmune diseases, most

notably CIDP

Hi Kate,

Id talk to a few more lymies, experts etc before the IVIG's. I had Lyme for a

long time before diagnosed as well with auto immune reactions..And what was my

first treatment .. 4 IVIG's !!

IVIG's essentially are immune factors from so many different people hoping to

give our immune system a boost. It worked for my x lyme doc whom had/has Lyme,

helped in the sense of symptoms. But, as Ive read mens immune systems are not as

strong/reactionary as females, so it would make sense theyd be less likely to

develop Auto immune disease.

But, it made me worse .. and logically, if a persons immune system is over

reactive, how is bombarding them with all sorts of antigens going to help them.

We Build immunity to things we are exposed to normally and thats what IVIG is ..

except from a large pool of donors. We get those immune responsive. Not to

mention all the things they dont/cant screen for at all levels. Getting bombared

by a hord of immune reactive cells made me very ill. Unless there is something I

dont understand, it doesnt make sense unless a person has not developed to the

stage of Auto Immune Disease.

We all want to trust and think we couldnt possibly get any worse because we feel

soooooooo bad. But, we can and do get worse to the point of being bed bound,

even death from thick blood causing heart attacks etc. I went through all this

since 99 .. and am just trying to control the worst symptoms.

Please get to understand the specific cases IVIG has helped before preceeding.

Again, it made me much worse. Just questioning, I just dont want people to get

sicker through not well thought out treatment.

[Guest guest]

Kate,

Why don't they put you back on the IV Rocephin? (I hope this isn't a

really stupid question.)

Aviva

On Mar 9, 2010, at 8:24 AM, Katenyc5@... wrote:

>

>

> and Cincin, I am burning 24/7, and it has gotten so severe

> since stopping IV Rocephin 3 weeks ago. When I was on Rocephin,

> after a month on it, the burning was about 80% better. I was happy;

> I could live with that even. But I can't live forever with the way

> it is now. Something's got to give.

>

> I'm looking at IVIG, I'm not jumping at the moment. But so far, 3

> neurologists and 1 LLMD have recommended it. I don't like the risks

> associated with it, even though they are minimal. And there is a

> subcutaneous way to do it now, which greatly reduces some of the

> risks.

>

> In the meantime, I'm looking at everything that could help.

>

> Thanks for all the comments!

>

> Re: [ ] Re: auto-immune AND IVIG'S

>

> My LLMD, a neurologist, has published on use of IVIG for Lyme

> patients. He told me his research and experience have shown that it

> helps with peripheral neuropathy, especially the burning

> sensations. He did not recommend it for other Lyme symptoms even

> those symptoms attributed to other types of neuropathy.

> -

>

> [ ] Re: auto-immune AND IVIG'S

>

> > The treatment they are all suggesting is called IVIG, which is

> >pooled blood from thousands of donors. This treatment is used in

> >autoimmune diseases, most notably CIDP

>

> Hi Kate,

>

> Id talk to a few more lymies, experts etc before the IVIG's. I had

> Lyme for a long time before diagnosed as well with auto immune

> reactions..And what was my first treatment .. 4 IVIG's !!

>

> IVIG's essentially are immune factors from so many different people

> hoping to give our immune system a boost. It worked for my x lyme

> doc whom had/has Lyme, helped in the sense of symptoms. But, as Ive

> read mens immune systems are not as strong/reactionary as females,

> so it would make sense theyd be less likely to develop Auto immune

> disease.

>

> But, it made me worse .. and logically, if a persons immune system

> is over reactive, how is bombarding them with all sorts of antigens

> going to help them. We Build immunity to things we are exposed to

> normally and thats what IVIG is .. except from a large pool of

> donors. We get those immune responsive. Not to mention all the

> things they dont/cant screen for at all levels. Getting bombared by

> a hord of immune reactive cells made me very ill. Unless there is

> something I dont understand, it doesnt make sense unless a person

> has not developed to the stage of Auto Immune Disease.

>

> We all want to trust and think we couldnt possibly get any worse

> because we feel soooooooo bad. But, we can and do get worse to the

> point of being bed bound, even death from thick blood causing heart

> attacks etc. I went through all this since 99 .. and am just trying

> to control the worst symptoms.

>

> Please get to understand the specific cases IVIG has helped before

> preceeding. Again, it made me much worse. Just questioning, I just

> dont want people to get sicker through not well thought out treatment.

>

>

[Guest guest]

it might go that way, aviva. i'm trying hard to do some natural alternatives

right now -- to see if i can improve this.

Re: [ ] Re: auto-immune AND IVIG'S

My LLMD, a neurologist, has published on use of IVIG for Lyme

patients. He told me his research and experience have shown that it

helps with peripheral neuropathy, especially the burning

sensations. He did not recommend it for other Lyme symptoms even

those symptoms attributed to other types of neuropathy.

-

[ ] Re: auto-immune AND IVIG'S

> The treatment they are all suggesting is called IVIG, which is

>pooled blood from thousands of donors. This treatment is used in

>autoimmune diseases, most notably CIDP

Hi Kate,

Id talk to a few more lymies, experts etc before the IVIG's. I had

Lyme for a long time before diagnosed as well with auto immune

reactions..And what was my first treatment .. 4 IVIG's !!

IVIG's essentially are immune factors from so many different people

hoping to give our immune system a boost. It worked for my x lyme

doc whom had/has Lyme, helped in the sense of symptoms. But, as Ive

read mens immune systems are not as strong/reactionary as females,

so it would make sense theyd be less likely to develop Auto immune

disease.

But, it made me worse .. and logically, if a persons immune system

is over reactive, how is bombarding them with all sorts of antigens

going to help them. We Build immunity to things we are exposed to

normally and thats what IVIG is .. except from a large pool of

donors. We get those immune responsive. Not to mention all the

things they dont/cant screen for at all levels. Getting bombared by

a hord of immune reactive cells made me very ill. Unless there is

something I dont understand, it doesnt make sense unless a person

has not developed to the stage of Auto Immune Disease.

We all want to trust and think we couldnt possibly get any worse

because we feel soooooooo bad. But, we can and do get worse to the

point of being bed bound, even death from thick blood causing heart

attacks etc. I went through all this since 99 .. and am just trying

to control the worst symptoms.

Please get to understand the specific cases IVIG has helped before

preceeding. Again, it made me much worse. Just questioning, I just

dont want people to get sicker through not well thought out treatment.