IVIG: what type exactly, by whom? Re: Re: please help life falling apart here!

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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.htmLiminOn Jan 25, 2011, at 06:07 PM, Dolores Claesson wrote: and JeanieIVIG is a blood product which is antibodies from 3,000-100,000 donors. Usually you qualify for IVIG if one or more of your IgG subclasses are low. There are quite a few IVIG types on the market and some have more IgA abs inside which may cause a reaction. Headache is one of the most common side effects. IVIG can transmit Hep C even though it is screened for it and in Europe they are having some problems so Europeans are coming here for IVIG. It is very expensive. Variant Creutzfeldt may also convey this way. Some people say the positive effects are short lived and others say it was instrumental in putting lyme in remission. Regards, DoloresSubject: Re: please help life falling apart here!To: BorreliaMultipleInfectionsAndAutism Date: Tuesday, January 25, 2011, 4:49 PM Limin,Daily Zithromax @250 mg day keeps the Pandas in check unless in my son's case he's exposed to a virus that does not clear in which case we need 30 days Augmentin because symptoms like OCD break through. Put another way Zitro gives us modest gains v v decrease or loss of PANDAS symptoms in the beginning and then holds them steady (I have 2 with Pandas.) IVIG + Zithro is giving my more typical daughter terrific global gains/recovery after 5 years of PANDAS symptoms. IVIG + Zithro is giving my son w/ PDD gains in language, cognition, socialization; yeast is a problem on Augmentin we have to also use Diflucan. I find that IVIG post treatment care requires vigilance for gut bugs, requires constant management of the gut. But, their relative gains and relative health as compared to the last 4-5 years do make these problems much clearer, they jump out.Hope it helps,>

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Jeanette,PANDAS stands for Pediatric Autoimmune Illness Associated with Streptococci.http://pandasnetwork.org/2010/12/video-pandas-2010-the-year-of-hope/LiminOn Jan 25, 2011, at 05:59 PM, Jeanette Janson wrote:If IVIG is intravenous immune boost derived from animals, researcher-immunologist did want people on something like that because the assumption was that the purity of the manufacture might be iffy and might trigger more immune imbalance; thought it better to go with slow but steady progress on LDN, Inosine, etc. "We cannot be sure exactly what is in it." The researcher is heavy into genetics and is probably aware of industry scuttlebutt about good mfg. practices. The info was not more specific than that and is vaguely remembered but seemed a good point given the altered genetics of animals and their food supply. Does anyone know of similar info.? Please, what is PANDAS?To: BorreliaMultipleInfectionsAndAutism Sent: Tue, January 25, 2011 6:33:23 PMSubject: Re: Re: please help life falling apart here!The azithro dosing for PANDAS is very new territory.....just like everything else. I am thinking it's very dose dependent on each child. My son was doing great at 750 mgs daily (he weighs 170 pounds and is 14, has severe PANDAS, and has most likely had PANDAS for many years gradually getting worse). We are now doing 500 mgs of azithro daily w/ Dr Usman's biofilm protocol (heavy duty).........we are seeing good gains across the board......language, anxiety, handwriting, math, behaviors, OCD, and rages/SIBS are gone!Hopefully we will continue w/ the gains on the azithro/biofilm. We are also trying to get insurance coverage for IVIG. I think you need to play w/ the dose of azithro to see what works for your child......also look into the biofilm protocol. Subject: Re: please help life falling apart here!To: BorreliaMultipleInfectionsAndAutism Date: Tuesday, January 25, 2011, 4:49 PM Limin,Daily Zithromax @250 mg day keeps the Pandas in check unless in my son's case he's exposed to a virus that does not clear in which case we need 30 days Augmentin because symptoms like OCD break through. Put another way Zitro gives us modest gains v v decrease or loss of PANDAS symptoms in the beginning and then holds them steady (I have 2 with Pandas.) IVIG + Zithro is giving my more typical daughter terrific global gains/recovery after 5 years of PANDAS symptoms. IVIG + Zithro is giving my son w/ PDD gains in language, cognition, socialization; yeast is a problem on Augmentin we have to also use Diflucan. I find that IVIG post treatment care requires vigilance for gut bugs, requires constant management of the gut. But, their relative gains and relative health as compared to the last 4-5 years do make these problems much clearer, they jump out.Hope it helps,>

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I have a friend who used abx and IVIG for about 4 years and he says the only thing that worked was the Marshall Protocol, There is another woman here in Fl who used 2 years of IVIG and IV rocephin and is back to work. Another lyme doc said he was ill for 30 years and used the MP and it worked. It seems that certain things have worked for some...and perhaps not for others...I think that once we knock down the bacterial and viral infections and parasites and worms we may be ok because the immune system can handle what is left. Each person's immune system is different. However, these bacterial infections infect macrophages so they are crippling the immune system. Brucella behaves a lot like Borrelia and quite a few people are showing up with infections of iella burnetti or Q fever, Brucella or Tularemia....and the gold

standard treatment for both Brucella and Tularemia is IM streptomycin and doxy together. IVIG carries risks. My 17 yr old daughter is taking it right now. She has missed almost 2 years of high school and has Borrelia, Babesia duncani, Ehrlichia, Bartonella, Brucella pos 3 times, Chlamydia pneumoniae, and has been immune suppressed as a result of all these infections...and viruses such as Herpes simplex and HHV6 and Human papilloma virus. Before any treatment her immune system was already in the tanks ! Probably got some of this at birth and then was infected again. It is now hitting her hormones....Hope any of this helps...Good Luck to all on your healing journey ! Dolores

Subject: Re: please help life falling apart here!To: BorreliaMultipleInfectionsAndAutism Date: Tuesday, January 25, 2011, 4:49 PM

Limin,Daily Zithromax @250 mg day keeps the Pandas in check unless in my son's case he's exposed to a virus that does not clear in which case we need 30 days Augmentin because symptoms like OCD break through. Put another way Zitro gives us modest gains v v decrease or loss of PANDAS symptoms in the beginning and then holds them steady (I have 2 with Pandas.) IVIG + Zithro is giving my more typical daughter terrific global gains/recovery after 5 years of PANDAS symptoms. IVIG + Zithro is giving my son w/ PDD gains in language, cognition, socialization; yeast is a problem on Augmentin we have to also use Diflucan. I find that IVIG post treatment care requires vigilance for gut bugs, requires constant management of the gut. But, their relative gains and relative health as compared to the last 4-5 years do make these problems much clearer, they jump out.Hope it

helps,>

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More than one LLMD has told me that strep is a coinfection to bartonella and it

is hard to shed strep without working on bartonella.

We are treating strep with augmentin and have finally shed the OCD -- love it.

However, we are also treating worms and I feel like some strep behaviors pop up

chronically with treating worms. My guess is that everything we have lives

within the worms and we make antibodies as the worms die and the other pathogens

are exposed. Seems you cannot kill bacteria inside of worms.

My friend with long-time lyme (23 years of treatment) is now finally in

remission after 6 months of focusing on worms. She actually took pictures using

a microscope of the worms she passed in her BM and found what appears to be a

spirochete coming out of a nematode. She was using ivermectin and diatomaceous

earth. Now she is only on DE.

Perhaps this is why people do recover on Salt C and not on antibiotics alone?

BTW, I read that the Amish use an herbal dewormer on a regular basis and we all

know they don't have autism.

Caryn

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