LymeNet Flash: adult onset pans or pandas?

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»	LymeNet Flash » Questions and Discussion » Medical Questions » adult onset pans or pandas?

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Topic: adult onset pans or pandas?

sleeping dog
Member
Member # 27267

posted

has anyone here been diagnosed with this? has anyone here had success with ivig treatment (children, teens, or adults)? and if you have experienced improvement with ivig treatment, how long did it take?

thank you.

Posts: 43 | From new jersey | Registered: Jul 2010 | IP: Logged |

surprise
Frequent Contributor (1K+ posts)
Member # 34987

posted

PANS is a big topic. My daughter has/ had it.

Before we knew about Lyme and co-infections (and personally I think Bartonella can be a big player in OCD, emotional liability, etc.)

She had 2 high dose IVIG's. For PANS, it is a high dose IVIG, unlike the kind used for immune deficiency, which is low dose.

We had to pay cash, big money. Insurance said no.
1st one produced more rage- so then we got 3 weeks Vancomycin for some reason,

2nd IVIG was MAGIC out the gate: happy, content--
until it all wore off (all the donor antibodies leaving the body)
in 4-6 weeks.

Steroids are given with the IVIG to deal with the aftereffects -
small dose, but nonetheless contradicted for Lyme and co.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011 | IP: Logged |

TF
Frequent Contributor (5K+ posts)
Member # 14183

posted

sleeping dog, I am trying to respond to your private message, but your mailbox is full.

Posts: 9931 | From Maryland | Registered: Dec 2007 | IP: Logged |

surprise
Frequent Contributor (1K+ posts)
Member # 34987

posted

Also tried PM'ing you back, mailbox full, need to delete old messages...

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011 | IP: Logged |

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