IVIG: what type exactly, by whom? Re: [BorreliaMultipleInfectio

[Guest guest]

I just don't think it's worth the risks, but I don't want to upset

anyone who is using it. We are all struggling and doing whatever we

can. But, for me personally, I wanted to try the gentle, low-risk

things first. Since my family responded, we didn't have to do the

higher risk or expensive things. So, please don't let me upset

anyone.

Love and prayers,

Heidi N

FDA guidelines for IVIG state that the product should not contain

samples which are HIV, hepatitis B, hepatitis C positive and should

be screened and treated in a manner that destroys viruses. Given

the raising awareness of XMRV (or MLV) is quite recent, and there

have not been guidelines established about this newly found

retrovirus or recommended XMRV screening. FDA has decided to

indefinite deferral for blood and plasma donors with a diagnosis of

CFS or PC, and not to use these blood donations for transfusion. It

is not clear to me if IVIG is still considered a safe product,

procedure. What do you all think?

http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm

Limin

[Guest guest]

IVIG postings are very valuable eye-openers and have the potential to help thousands of people. Please forgive yourself; you were doing the best you could with limited knowledge and have over-suffered . Ease up on yourself; no need for shame, and look at how you are turning the situation around already so that others do not have to go through this unaware. Thank God for my immunologist at UM who warned me.To: BorreliaMultipleInfectionsAndAutism Sent: Wed, January 26, 2011 11:54:33 PMSubject: IVIG: what type exactly, by whom? Re: [borreliaMultipleInfectio

I hate to repeat this but if this will help another child, and parent give this some thought;

here goes. And I am not proud at all that I put my son through this, it breaks my heart

thinking about how much he suffered.

My son had IVIG, for 2 yrs, and was given an infusion once every 3 weeks. And no improvement at all.

**WE did not know he had lyme, or mycoplasma at the time.

Wished he had NEVER had this.

Why? Because one infusion, is made up from 20 + blood donors, and it is NOT tested for Lyme, or XMRV.

So you could end up much worse off than when you started.

The infusion process can be a long day, if the nurse can not start an IV on your child,

and they end up with multiple sticks in the arm. Then the side effects, and each child is different; fever, gaging - wanting to vomit ( ususally runing the IV too fast), diarrrhea

for days on end, tired, needing lots more sleep. This can go on for a few days - to a week.

Also you have to know that a saline bag of fluid should be run in before and after the IVIG fluid, so you don't run the risk of a clot in the vein. You will then also have to do blood

tests regularly to check liver functioning.

The costs of this treatment $$$$$.

If your insurance provider does cover it, you will have to jump through whoops to have everything to back up the need for it.

I don't know what else to mention about this, but ask if you still have questions.

HTH's

Allie

>

> I just don't think it's worth the risks, but I don't want to upset

> anyone who is using it. We are all struggling and doing whatever we

> can. But, for me personally, I wanted to try the gentle, low-risk

> things first. Since my family responded, we didn't have to do the

> higher risk or expensive things. So, please don't let me upset anyone.

>

> Love and prayers,

>

> Heidi N

>

> FDA guidelines for IVIG state that the product should not contain

> samples which are HIV, hepatitis B, hepatitis C positive and should be

> screened and treated in a manner that destroys viruses. Given the

> raising awareness of XMRV (or MLV) is quite recent, and there have not

> been guidelines established about this newly found retrovirus or

> recommended XMRV screening. FDA has decided to indefinite deferral for

> blood and plasma donors with a diagnosis of CFS or PC, and not to use

> these blood donations for transfusion. It is not clear to me if IVIG is

> still considered a safe product, procedure. What do you all think?

>

> http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm

> <http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm>

>

> Limin

>

[Guest guest]

Hello

Thank you for your input....It is very hard to know what to do or employ. I did not want my daughter to use IVIG but she will be 18 in about 4 months and she wanted to try it. She is positive for Borrelia, Babesia duncani, Ehrlichia, Bartonella, and Chlamdia pneumoniae, HHV 6 and HSV and human papillomavirus and now Brucella. Brucella testing can cross react with other types of coccobacilli bacteria ie...Tularemia. The gold standard for treatment of Brucella or Tularemia is IM streptomcyin and 200 mg doxy per day. However, Brucella can go into the brain and you have neurobrucellosis, it infects macrophages and muscles etc and is hard to eradicate and can have a chronic form. It also has night sweats as one of the symptoms, so when you read lyme literature you think those night sweats are from Babesia but they may be from Brucella for instance. Complicates the picture when you have both....

Anyway, I do not know how to fix the macrophage problem and perhaps IVIG might be the way to do that. Maybe if we got the right abx immediately we would be able to fix the problems in a timely fashion. Not one physician tested my daughter for Brucella, until I begged a NP for the test. and now it has been positive 3 times. We have seen many docs LLMD's, ID 's and others. No one looked for other things once she had the lyme diagnosis. So who knows if the IVIG will prove helpful. We are all trying to figure out these complex illnesses. Good Luck to all on your healing journey. Dolores

Subject: Re: IVIG: what type exactly, by whom? Re: [borreliaMultipleInfectioTo: BorreliaMultipleInfectionsAndAutism Date: Thursday, January 27, 2011, 5:32 AM

IVIG postings are very valuable eye-openers and have the potential to help thousands of people. Please forgive yourself; you were doing the best you could with limited knowledge and have over-suffered . Ease up on yourself; no need for shame, and look at how you are turning the situation around already so that others do not have to go through this unaware. Thank God for my immunologist at UM who warned me.

To: BorreliaMultipleInfectionsAndAutism Sent: Wed, January 26, 2011 11:54:33 PMSubject: IVIG: what type exactly, by whom? Re: [borreliaMultipleInfectio

I hate to repeat this but if this will help another child, and parent give this some thought;here goes. And I am not proud at all that I put my son through this, it breaks my heartthinking about how much he suffered.My son had IVIG, for 2 yrs, and was given an infusion once every 3 weeks. And no improvement at all. **WE did not know he had lyme, or mycoplasma at the time. Wished he had NEVER had this. Why? Because one infusion, is made up from 20 + blood donors, and it is NOT tested for Lyme, or XMRV. So you could end up much worse off than when you started. The infusion process can be a long day, if the nurse can not start an IV on your child,and they end up with multiple sticks in the arm. Then the side effects, and each child is different; fever, gaging - wanting to vomit ( ususally runing the IV too fast), diarrrheafor days on end, tired, needing lots more sleep. This can go on for a few days - to

a week.Also you have to know that a saline bag of fluid should be run in before and after the IVIG fluid, so you don't run the risk of a clot in the vein. You will then also have to do bloodtests regularly to check liver functioning.The costs of this treatment $$$$$.If your insurance provider does cover it, you will have to jump through whoops to have everything to back up the need for it. I don't know what else to mention about this, but ask if you still have questions.HTH'sAllie>> I just don't think it's worth the risks, but I don't want to upset > anyone who is using it. We are all struggling and

doing whatever we > can. But, for me personally, I wanted to try the gentle, low-risk > things first. Since my family responded, we didn't have to do the > higher risk or expensive things. So, please don't let me upset anyone.> > Love and prayers,> > Heidi N> > FDA guidelines for IVIG state that the product should not contain > samples which are HIV, hepatitis B, hepatitis C positive and should be > screened and treated in a manner that destroys viruses. Given the > raising awareness of XMRV (or MLV) is quite recent, and there have not > been guidelines established about this newly found retrovirus or > recommended XMRV screening. FDA has decided to indefinite deferral for > blood and plasma donors with a diagnosis of CFS or PC, and not to use > these blood donations for transfusion. It is not clear to me if IVIG is > still considered a

safe product, procedure. What do you all think?> > http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm > <http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm>> > Limin>

[Guest guest]

Oh my gosh.I am so sorry for your experience. I often think of going

the IVIG route.I guess I am lucky that no doc. has said yes. My son

would pick up and not be able to rid himself of more infections.

I would think that by now the IVIG doctors

could overcome that very serious problem that your child

experienced. Do you now have a good LLMD. What do you have to do

different now? Have doctors helped you through this mess? I really

appreciate you sharing.

Sincerely,Tammy F.

I hate to repeat this but if this will help another

child, and parent give this some thought;

here goes. And I am not proud at all that I put my son

through this, it breaks my heart

thinking about how much he suffered.

My son had IVIG, for 2 yrs, and was given an infusion once

every 3 weeks. And no improvement at all.

**WE did not know he had lyme, or mycoplasma at the time.

Wished he had NEVER had this.

Why? Because one infusion, is made up from 20 + blood

donors, and it is NOT tested for Lyme, or XMRV.

So you could end up much worse off than when you started.

The infusion process can be a long day, if the nurse can

not start an IV on your child,

and they end up with multiple sticks in the arm. Then the

side effects, and each child is different; fever, gaging -

wanting to vomit ( ususally runing the IV too fast),

diarrrhea

for days on end, tired, needing lots more sleep. This can

go on for a few days - to a week.

Also you have to know that a saline bag of fluid should be

run in before and after the IVIG fluid, so you don't run

the risk of a clot in the vein. You will then also have to

do blood

tests regularly to check liver functioning.

The costs of this treatment $$$$$.

If your insurance provider does cover it, you will have to

jump through whoops to have everything to back up the need

for it.

I don't know what else to mention about this, but ask if

you still have questions.

HTH's

Allie

>

> I just don't think it's worth the risks, but I don't

want to upset

> anyone who is using it. We are all struggling and

doing whatever we

> can. But, for me personally, I wanted to try the

gentle, low-risk

> things first. Since my family responded, we didn't

have to do the

> higher risk or expensive things. So, please don't let

me upset anyone.

>

> Love and prayers,

>

> Heidi N

>

> FDA guidelines for IVIG state that the product should

not contain

> samples which are HIV, hepatitis B, hepatitis C

positive and should be

> screened and treated in a manner that destroys

viruses. Given the

> raising awareness of XMRV (or MLV) is quite recent,

and there have not

> been guidelines established about this newly found

retrovirus or

> recommended XMRV screening. FDA has decided to

indefinite deferral for

> blood and plasma donors with a diagnosis of CFS or

PC, and not to use

> these blood donations for transfusion. It is not

clear to me if IVIG is

> still considered a safe product, procedure. What do

you all think?

>

> http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm

> <http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm>

>

> Limin

>

[Guest guest]

Tammy

Yes, my son has been with a LLMD for over a year now. And slowly there have been

improvments, somethings bigger improvements than ever before from anything else

we have tried ( HCH, < Homeopathic,special diet, Yasko, DAN, mult. therapies,

etc..)

And many of these were helpful as, they also needed to be included.

The lyme was the underlying factor, and doing the steps of each protocol has

been a key

factor.

Stil have much to do

Allie

> > >

> > > I just don't think it's worth the risks, but I don't want to upset

> > > anyone who is using it. We are all struggling and doing whatever we

> > > can. But, for me personally, I wanted to try the gentle, low-risk

> > > things first. Since my family responded, we didn't have to do the

> > > higher risk or expensive things. So, please don't let me upset anyone.

> > >

> > > Love and prayers,

> > >

> > > Heidi N

> > >

> > > FDA guidelines for IVIG state that the product should not contain

> > > samples which are HIV, hepatitis B, hepatitis C positive and should be

> > > screened and treated in a manner that destroys viruses. Given the

> > > raising awareness of XMRV (or MLV) is quite recent, and there have not

> > > been guidelines established about this newly found retrovirus or

> > > recommended XMRV screening. FDA has decided to indefinite deferral for

> > > blood and plasma donors with a diagnosis of CFS or PC, and not to use

> > > these blood donations for transfusion. It is not clear to me if IVIG is

> > > still considered a safe product, procedure. What do you all think?

> > >

> > >

> >

http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesan\

dOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm

> >

> > >

> >

<http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesa\

ndOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm>

> > >

> > > Limin

> > >

> >

> >

>