IVIG

[Guest guest]

polyneuropathy is very often lyme induced and related. in fact the patient can

have poly

or peripheral neuropathy and all testing (emg, ncv) can come back negative

regardless of

symptoms!

> - I just noticed in your email response regarding IVIG's that you

> have a friend with CIPD. Is it CIPD or CIDP. I have a friend with the

> latter-CIDP...Chronic Inflammatory Deyelating Polyneuropathy. If that's

> what you are thinking about, is it known that CIPD is Lyme related???

> Thanks!! Elaine

[Guest guest]

Sorry, My friend has CIDP (from lyme) and ins is covering it under the CIDP dx

not thel lyme, of all my lyme friends, he is doing the best.

mcpucho <mcpucho@...> wrote:

polyneuropathy is very often lyme induced and related. in fact the patient can

have poly

or peripheral neuropathy and all testing (emg, ncv) can come back negative

regardless of

symptoms!

> - I just noticed in your email response regarding IVIG's that you

> have a friend with CIPD. Is it CIPD or CIDP. I have a friend with the

> latter-CIDP...Chronic Inflammatory Deyelating Polyneuropathy. If that's

> what you are thinking about, is it known that CIPD is Lyme related???

> Thanks!! Elaine

Questions and/or comments can be directed to the list owner at

-Owner

[Guest guest]

Carmen

I guess you didn't see my whole message re: my friend. I was saying that he has

gotten IVIG's for 3yrs every 2wks and I think the IVIG's have played the biggest

part in his recovery.Because of the IVIG's he is able to work full time, travel,

etc.

Carmen <migragurl@...> wrote:

Of all my lyme friends, he is doing the best, still functioning

well, working fulll time, traveling, etc. I think that has been a

big part of his recovery.

>

Do you mean that being busy has helped this person with their

recovery? Because I would have to say, that FOR ME lying in bed was

more aggravating than just doing anything - and then I fell in love

with my present carreer - but I am happy for your friend too. there

are many days ( 3 weeks a month ) I cannot work. but at least I have

a bit of an 'out'.

I feel for people who cannot do anything because even a hobby is so

healthy to get your mind into a healthier space.....I find my

anxiety takes over, and if I didn't have distractions, I would

probably be more ill. Carmen

Questions and/or comments can be directed to the list owner at

-Owner

[Guest guest]

OH that is GREAT to hear! Will he get to a point when he can stop

them? I know this sounds like an obvious question, but it seems to

differ from person to person, doesn't it? Thank you, I am happy for

your friend...he had no reactions?

Carmen

ps - I wish we could all do what we love to do best. I mean this

with sincerety.

>

>

> Of all my lyme friends, he is doing the best, still functioning

> well, working fulll time, traveling, etc. I think that has been a

> big part of his recovery.

> >

> Do you mean that being busy has helped this person with their

> recovery? Because I would have to say, that FOR ME lying in bed

was

> more aggravating than just doing anything - and then I fell in

love

> with my present carreer - but I am happy for your friend too.

there

> are many days ( 3 weeks a month ) I cannot work. but at least I

have

> a bit of an 'out'.

> I feel for people who cannot do anything because even a hobby is

so

> healthy to get your mind into a healthier space.....I find my

> anxiety takes over, and if I didn't have distractions, I would

> probably be more ill. Carmen

>

>

>

>

>

>

> Questions and/or comments can be directed to the list owner at

-Owner@Y...

>

>

[Guest guest]

I know this sounds like a dumb question but is it intravenous? Is it

an amino acid? Carmen

> >

> >

> > anybody doing ivig?

> > eric

[Guest guest]

My friend has tried to cut back on the IVIG, like every month or two, but he

can't go that long inbetween treatments. He gets worse and had to go back to

every 2wks. for the rest of his life.

Carmen <migragurl@...> wrote:

OH that is GREAT to hear! Will he get to a point when he can stop

them? I know this sounds like an obvious question, but it seems to

differ from person to person, doesn't it? Thank you, I am happy for

your friend...he had no reactions?

Carmen

ps - I wish we could all do what we love to do best. I mean this

with sincerety.

>

>

> Of all my lyme friends, he is doing the best, still functioning

> well, working fulll time, traveling, etc. I think that has been a

> big part of his recovery.

> >

> Do you mean that being busy has helped this person with their

> recovery? Because I would have to say, that FOR ME lying in bed

was

> more aggravating than just doing anything - and then I fell in

love

> with my present carreer - but I am happy for your friend too.

there

> are many days ( 3 weeks a month ) I cannot work. but at least I

have

> a bit of an 'out'.

> I feel for people who cannot do anything because even a hobby is

so

> healthy to get your mind into a healthier space.....I find my

> anxiety takes over, and if I didn't have distractions, I would

> probably be more ill. Carmen

>

>

>

>

>

>

> Questions and/or comments can be directed to the list owner at

-Owner@Y...

>

>

[Guest guest]

I " ve been doing small doses (5 grams). It gives you passive

antibodies so it won't last. It is helpful, definitely gives more

energy, just makes me feel more " normal. " I also do home hyperbaric,

I had slacked off and maybe only done 20 minutes once or twice in the

last few weeks and began to feel it. I need to do about 30-40

minutes at least once a week (of hyperbaric, mild chamber) to

maintain a certain level. Adding in the IVIG has also been helpful. I

would say for me, who doesn't do antibiotics, the hyperbaric is the

most important, IVIG also really helps, and I need my weekly

vitamin/mineral IV with at least 3 cc of magnesium.

[Guest guest]

It is so expensive, it's prohibitive....what a shame...maybe it will

become widespread enough in it's use that it'll be covered....this

is something I look out for, as even though ABX's have worked for

me, it's only been short term.

Interesting approach you have to treating the Lyme - I will check

into 'home hyperbaric' and do some research.

Thank you for the information, Carmen

>

> I " ve been doing small doses (5 grams). It gives you passive

> antibodies so it won't last. It is helpful, definitely gives more

> energy, just makes me feel more " normal. " I also do home

hyperbaric,

> I had slacked off and maybe only done 20 minutes once or twice in

the

> last few weeks and began to feel it. I need to do about 30-40

> minutes at least once a week (of hyperbaric, mild chamber) to

> maintain a certain level. Adding in the IVIG has also been

helpful. I

> would say for me, who doesn't do antibiotics, the hyperbaric is

the

> most important, IVIG also really helps, and I need my weekly

> vitamin/mineral IV with at least 3 cc of magnesium.

[Guest guest]

How difficult is it to get ins. to cover this?

Is this done at home or office?t

thank you

best,

lea

[Guest guest]

I am getting the IVIG covered by ins. under the " MS " dx I have, it will not pay

under the lyme dx. Another way, is if you have low blood levels of

immunoglobins, then ins will pay. I have good ins, so, a nurse comes to my house

for the treatments every two wks, it is a 3hr treatment. If you have Medicare

you have to go to a hosp to get the IVIG.

bydusk <bydusk@...> wrote:

How difficult is it to get ins. to cover this?

Is this done at home or office?t

thank you

best,

lea

Questions and/or comments can be directed to the list owner at

-Owner

[Guest guest]

In a message dated 4/13/2005 12:27:35 PM Eastern Daylight Time,

delwoody@... writes:

,

I have been getting Ivig for 1 year plus now, the reason I had to, was

because my Immunoglobulin levels were very low and I was catching one infection

after another and the most serious one was (PCP) pneumocystis pneumonia which

almost did me in again as I have had that particular pneumonia twice.

Although I do get the odd infection now, it would be worse if not for Ivig. I

also

take Septra (regular) 2 pills 3x's a week as a

prophylaxis for PCP.

Cheers,

Del

[Non-text portions of this message have been removed]

[Guest guest]

In a message dated 4/15/2005 6:46:01 PM Eastern Daylight Time,

delwoody@... writes:

Hi , no this Ivig was prescribed for me for the continuous infections I

was getting and my levels being so low and unable to fight off these

infections. I had read on the Acor list I think that there was a patient

getting Ivig

for her CLL, but to my knowledge it's not one of the protocols used. I

mentioned that I was also on Septra(Bactrim) for a prophylaxis for PCP. Well I

did some research today and I've made an appointment with my Dr. for next

week to talk to him about the Septra I'm taking. It's a pretty bad drug fraught

with many side effects, some of which I now experience, fatigue, chills,

anemia,joint pain, insomnia, eye irritations and the list goes on. Some of

these

things no doubt are CLL related but some of the symptoms I have now I never

experienced them before I started taking Septra (Bactrim). Just somemore

info to digest.

Cheers,

Del

[Non-text portions of this message have been removed]

[Guest guest]

Becky, I had IVIG, and found it easy. It also did

nothing to change my state! Carolyn Age 77, dx 9/04

w & w

--- pitlochry10 <pitlochry10@...> wrote:

> My doc took some blood to see if I'd be a candidate

> for IVIg. This is

> getting to be weird! I guess he's just trying to

> keep me from getting

> anything infectious so I don't land in the hospital.

> My WBC did go

> up from 1.6 to 1.8 and so did the neutrophils. I'm

> feeling much

> better too. So has anyone had IVIg before?

>

> Becky B. dx 11/2004, FR and R mntce

>

>

>

>

>

>

>

[Guest guest]

Hi AJ -

Yes, we have already started to collect things to bring along with us! I

am sure I will waay overpack!! Hopefully they will have things to do for

her and food. I am sure. It's a children's hospital! I am bringing my

laptop for me. At least I can check email and do some work while she's

resting or watching a movie. She told her doctor yesterday that she is

going to get her pic line back in again, but it will only be for a

little time not a long time like the last one!

Are you going to be a CAL again this year at AJAO?

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On

Behalf Of ajaomom@...

Sent: Friday, February 10, 2006 10:25 PM

Subject: ivig

Alia,

I forgot to mention in my last post, Holly was treated with IVIG,

with her

second flare many, many moons ago...........it worked really well

then......but didn't work the next year when we tried it again.......but

she always

felt great after a treatment........we just planned for lots of things

to

do........it was laughable the things we would bring with us, lol

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_

(http://www.caringbridge.org/visit/holly)

[Guest guest]

Dear Finette,

I just noticed this post from a month ago. My daughter, just saw Dr. K in CT

last week and he is going to see if he can get approval for her to try the IVIG.

Her total IgG serum was 699 & 755 on two different days, both low, and the IgG

subclass 4 was 5.1 & 5.4 both low. Like you said, borderline low, not dramatic.

Dr. K said that these may be enough coupled with the HLA-DR4, the positive band

31, and the lack of great response to Orals and IV antibiotics (2 years with

subtle improvement). She also has a history of Myoclonus which are mostly

resolved, but the history may help. And her SPECT scan showed moderate to severe

hypoprofusion, (lack of blood flow) and the 2 neuropsych reports showed

cognitive issues. He is not sure if it will be covered but said to call in 2

weeks to check.

My friend who was ill for about 10 years has had good success with the IVIG. The

orals and IVs did not help until she started the IVIG and now they seem to work

better. She must stay on the brand name Gammugard (?) as she reacted when they

tried to switch brands. And when she platued Dr. K raised the dose by 40% and

she again had a positive response. I am hoping if Meg gets approval, that it

will help. I hate trying treatments like this that are so costly, but feel we

gotta do what we gotta do. I trust Dr. K and he works well with Dr. J in CT. So

with prayers, we are moving forward, I hope.

Has your son stablized at all? Is he still off the IVIG?

Sure is a tough illness to deal with.

Z

[ ] IV IGG

Hi

I love that we are getting more " active " here!!! anyway does anyone

have any experience with IV IGG??? Evan's IGG levels had dropped and

he had a 6 month trial of monthly IGG by IV...the first 2 were at

Hospital/Dr office at 60 gms...helped him a LOT and finally we had

treatment progress with abx. But then at home he was then given 38

gms and after 4th one he plateaued and no further improvement.But it

did restore his IGG levels for awhile

since then it has been 4 months and again his levels dropping, sx

worse and no meds are helping. We sought yet another immuno consult

and heard the same thing... " his levels are low but not abnormal

enough to get insurance to authorize; nor low enough to ethically

chance an adverse event as its a blood product and therefore has

risks " .

Because his bloods are not very low/borderline there is a question

about a true " common immunodeficiency " vs depression due to Lyme. Of

course if the " L " word is mentioned nothing will be authorized as

for Lyme its " experimental " ; the only accepted treatment is for an

immune problem iitself.

If normals are 800-1200, his come in at 789-805 -for me, Im thinking

thats low enough!!

what Id like to know is how many have tried IGG and for which dx;

how low were the levels; and what results if any??

thanks

Finette

[Guest guest]

IVIG is generally used to enhance immunity, or the ability to fight disease.

The manufacture of IVIG consists of the taking of blood products for many donors, suitably screened, and making a serum from this blood which hopefully contains lots of antibodies to lots of things.

I have never heard of it being less than perfectly safe.

The question is is it going to do you any good. Earlier this year they were running out of it on the East Coast, there was such a demand.

Like someone mentioned, I think Carolyn, I've had it several times and it did nothing.

There are doctors who are against giving it, because they want our own immune system to manufacture appropriate antibodies with no outside help.

In my case. for example, babesiosis (the infamous parasite determined to spoil my life), I was told that it would probably not do much good because much of the IVIG used here comes from Europe, where my kind of Babesiosis does not exist.

So, it's very much a judgment call. It's unlikely to hurt you, but you might be wasting your time. Also, count on a half day for the infusion. If in doubt, ask your doc a few leading questions, see how he responds, then decide.

[Guest guest]

>

>

>

Thank you for all the information received on IVIgG. I am going to

take it, but I am going with low expectatives. Since I have alergy to

the antibiotics, I hope this can boost my immune system. If it does

not, at least I have done my best.

After the treatment, I will let you know if it help.

Thank you.

Gisele

[Guest guest]

" We did his blood work & his over all IGG counts were low though not the the sub

classes. His IGm was very elevated...does IVIG help in repairing the gut?... "

Nandini,

Welcome to the group.

If you have not already, please make sure that you read the information at the

Immune Deficiency Foundation and Jeffery Modell Foundation pages.

Has your doctor ruled out X-linked hyper-IgM syndrome? With the low IgG, high

IgM, and GI problems, I would want to make sure that this is, or is not, the

situation. What you said raises flags and there are now blood tests to assess

this problem.

If GI problems are due to infectious diseases and antibody production problems,

it can help. My daughter had infectious colitis and it did help. BUT, there

are many reasons why our kids have GI problems and I don't know what you are

facing.

http://www.primaryimmune.org/pid/whatis_pid.htm

http://www.jmfworld.com/

Keep asking questions.

mom Dani (4) CVID

[Guest guest]

Nandini,

Has your son had an MRI, or seen an endocrinologist? My daughter

(2.5, autism)has not grown in 10 months, and weighs the same as she

did last September. We attributed it to gut issues, as she has her

share. Nasty acrid subdivision clearing poops with food still in

them, and painful 3 hr tantrum throwing gas attacks.

We naturally attributed the growth issue to malabsorption.

Last week Jade was scoped, and biopsied, upper and lower. She was

squeaky clean, and all 10 biopsies were negative (still do not know

what was tested for). I am not sure if it could be yeast, but I

think they could have seen it in a scope, dunno yet. Jade has been

soy and casien free for a yr. We have done a urine organic acid

which didn't show yeast, so we are still trying to figure this out.

What we have learned is through Jade's MRI. She has an empty sella,

which means her pituitary has been squished, or flattened. Don't

know how it happened yet. But this causes the pituitary to

malfunction, and not send enough growth hormones.

Without an MRI we would have not known. I am amazed at how many

children with ASD never get an MRI as part of the diagnostic workup.

It took us asking for one, 10 months after diagnosis.

We just found out a couple weeks ago, and are waiting for a call

back from endocrinology for an appt.

If you don't have an MRI, I would ask for one. My daughter could

have remained 2 1/2 feet for years til the doctor did something!

>

> Hi All,

>

> This is my 1st post. My son has a diagnosis of Autism & seems to

be immune

> difficient. We did his blood work & his over all IGG counts were

low though

> not the the sub classes. His IGm was very elevated.

>

> His immunologist is recommending IVIG. I have 2 related questions:

>

> 1. Does IVIG help in reparing the gut ? He has tons of gut issues,

very poor

> intestinal flora & food allergies, unable to breakdown proteins &

> essentially has not been gaining weight & hieght for the last 2

years.

>

> 2. Does IVIG contain large amounts of protein coz he has issues

with it &

> are some brands better than others when it comes to protein

contenet.

> Thank you so much in advance for your response.

>

> Nandini

>

[Guest guest]

& , thank you for your responses , I have a question

for you. How dou you exclude a condition like X-linked hyper-IgM syndrome.

What kind of Doc do I have to see. Can the immunologist check for this ?

Thanks

Nandini

>From: Schulman <dietdoc@...>

>Reply-

>

>Subject: Re: IVIG

>Date: Tue, 19 Sep 2006 22:10:10 -0700 (PDT)

>

> " We did his blood work & his over all IGG counts were low though not the

>the sub classes. His IGm was very elevated...does IVIG help in repairing

>the gut?... "

>

>Nandini,

>

>Welcome to the group.

>

>If you have not already, please make sure that you read the information at

>the Immune Deficiency Foundation and Jeffery Modell Foundation pages.

>

>Has your doctor ruled out X-linked hyper-IgM syndrome? With the low IgG,

>high IgM, and GI problems, I would want to make sure that this is, or is

>not, the situation. What you said raises flags and there are now blood

>tests to assess this problem.

>

>If GI problems are due to infectious diseases and antibody production

>problems, it can help. My daughter had infectious colitis and it did help.

> BUT, there are many reasons why our kids have GI problems and I don't

>know what you are facing.

>

>http://www.primaryimmune.org/pid/whatis_pid.htm

>http://www.jmfworld.com/

>

>Keep asking questions.

>

>mom Dani (4) CVID

>

>

[Guest guest]

Hi my name is Crystal and my son Gage has CVID and autism and has

recieved IVIG since he was 3 and yes it was the best thing ever for

his gut issues we had tried everything and nothing worked but the IGG

infusions and now he is on SQIG still having much better luck with

his gut issues. I'm not sure about the second question but Gage is

allergic to everything and does great with his infusions

Crystal

>

> Hi All,

>

> This is my 1st post. My son has a diagnosis of Autism & seems to be

immune

> difficient. We did his blood work & his over all IGG counts were

low though

> not the the sub classes. His IGm was very elevated.

>

> His immunologist is recommending IVIG. I have 2 related questions:

>

> 1. Does IVIG help in reparing the gut ? He has tons of gut issues,

very poor

> intestinal flora & food allergies, unable to breakdown proteins &

> essentially has not been gaining weight & hieght for the last 2

years.

>

> 2. Does IVIG contain large amounts of protein coz he has issues

with it &

> are some brands better than others when it comes to protein

contenet.

> Thank you so much in advance for your response.

>

> Nandini

>

[Guest guest]

Theresa,

My daughters arthritic symptoms have never been that bad; swollen fingers or

sore muscles. The majority of the disease presents itself in her eyes. MTX &

cyclosporin helped her sore body, but it didn't do anything for the inflammation

in her eyes.

She has been on IVIG for a year and a half. She receives her infusions over a

5 day period every month, and it takes about 4 1/2 hours a day. When she first

started, it was over a 3 day period. It wasn't enough, so they doubled her

dose. She even has a port in to help protect the veins in her arm and hand.

They flush her port after every infusion.

Yes it has helped her eyes, and she has felt better than she has in a long

time. Make sure the person infusing KNOWS to infuse slow, and not in a one day

setting. It does not supress the immune system, and in fact helps to keep your

child from infection. Taking up on fluids helps with side effects.

Any questions at all, just let me know. I hope this is the med for your

child,

' & a 10 jia/uveitis

tj2girls2 <tj2girls@...> wrote:

Is anyones child having IVIG treatments in conjunction with any other

treatments for JRA? Is the IVIG treatment related to the treatment of

the JRA or are there other factors? Has the treatment helped?

I guess beyond this I am not sure what questions to ask - so if you

dont' mind sharing as much detail as possible I would apprecite it.

Thank you, Theresa

---------------------------------

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

Hi Theresa,

My daughter Caitlin tried IVIG as a treatment for her systemic JRA. She was

also on MTX and Naprosyn at the time. Caitlin had the infusion over a ten hour

period in the day clinic at our local children's hospital. As said, the

slower the infusion the better. Having the infusion over several days could

help alleviate some of the problems Caitlin had. Because she had the dose in

one day (albeit a long one) she suffered severe headaches and vomiting,

beginning about 8 hours after the infusion was complete. The headaches were

actually from swelling in the brain, which can be a common side effect.

Unfortunately, time was the only salve to that problem. Caitlin usually missed

the day after treatment due to the side effects... which was almost like a bad

24 hour flu. Then she was fine.

And, she did feel better.... enough so that she was willing to keep going

with the treatment for several months. Eventually, it didn't work as well, and

we had to move on.

If you have the opportunity to do the infusion over several days, it sound

like that works well. But if not, you might want to talk with the doc about

extra Benadryl or stomach meds to help alleviate any potential side effects.

Good luck and I hope it all works out for you guys....

Best hopes-

Colleen (mom to Caitlin, 8, systemic)

tj2girls2 <tj2girls@...> wrote:

Is anyones child having IVIG treatments in conjunction with any other

treatments for JRA? Is the IVIG treatment related to the treatment of

the JRA or are there other factors? Has the treatment helped?

I guess beyond this I am not sure what questions to ask - so if you

dont' mind sharing as much detail as possible I would apprecite it.

Thank you, Theresa

---------------------------------

Get your email and more, right on the new .com

[Guest guest]

Hi Theresa,

My son gets ivig every three three weeks. Unlike the other people who wrote

in, he gets the infusion pretty quickly, in about two hours and has been

fine with it. I think ivig is used to treat jra, but other drugs work

better, from what I understand. My son is on ivig because his antibody count

was really low, and he had to be taken off the other arthritis medicines

because of a reaction to methotrexate. So the ivig is also working to

control his arthritis as well as helping along his immune system. He gets

benadryl and tylenol before getting the infusion. What is the reason your

child is getting ivig? Take care. (and Ezra, 10 year old systemic)

On 9/26/06 2:45 PM, " tj2girls2 " <tj2girls@...> wrote:

>

>

>

>

> Is anyones child having IVIG treatments in conjunction with any other

> treatments for JRA? Is the IVIG treatment related to the treatment of

> the JRA or are there other factors? Has the treatment helped?

>

> I guess beyond this I am not sure what questions to ask - so if you

> dont' mind sharing as much detail as possible I would apprecite it.

> Thank you, Theresa

>

>

>

[Guest guest]

My daugther is not being treated by IVIG at this time; we have a good

friend who's children are all treated by IVIG due to the lack of

certian antibodies in their systems. I read someone on here and

causually they mentioned IVIG and I was curious about how it was used

with arthritis and why. My daugther is currently on large dose of

prednisone (900mg) once every four wks by infusion and then 200mg of

Remicade in conjunction with methotrexate and sulindac. This last

infusion 2wks ago was the first w/ the pred pulse and higher dose of

remi, so time will tell, but to this point nothing has worked and we

have been in flare that can not get controlled since June of 05.

Thank you for the feed back... it sounds to me like IVIG is used either

as a replacement for other meds or due to systemic or eye issues??

Blessings,

Theresa

>