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Smiles111
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Member since 12/06 1905 total posts
Name:
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Anyone have an OB/MFM/Peri who "believes in" immune issues?
I asked OB about having repeat immune panel to see if the intralipid treatment was effective. (I had my last & final infusion a week ago @ almost 20 wks).
He said they don't believe in immune issues and so they wouldn't even know how to interpret the results.
Then he said some things that I know are not true and more or less called Dr B a quack.
Needless to say, I was not reassured.
Anyone have an OB/MFM/Peri who "believes in" immune issues and works with you on them?
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Posted 6/8/12 8:50 AM  |
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AngnShaun
Sisters
Member since 1/10 21015 total posts
Name:
Ang
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
Shouldnt your RE be doing it again?
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| Posted 6/8/12 9:23 AM |
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Smiles111
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Member since 12/06 1905 total posts
Name:
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
The RE who did my IVF (Dr Tortoriello) discharged me at 8 wks w/a rx for intralipids every 3 weeks til 20 wks, which is just a standard protocol. No mention of re-testing.
I did all of the immune testing w/dr B before he stopped taking insur.
Do people go back to their RE for this?
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| Posted 6/8/12 10:06 AM |
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AngnShaun
Sisters
Member since 1/10 21015 total posts
Name:
Ang
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
The RE is the one that ordered the intralipids though right? i would assume they would be responsible to keep up with the retesting... but idk.
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| Posted 6/8/12 11:08 AM |
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cateyemm
Twins!
Member since 7/10 8027 total posts
Name:
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
dr goldstein *might*
dr pilliteri will do what dr kofinas tells him to do... not sure what pilitteri's philosopy is but i think kofinas does order intralipids
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| Posted 6/8/12 12:01 PM |
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KMCGK
Gotta have faith
Member since 7/09 2176 total posts
Name:
Keep the Faith
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
Posted by cateyemm
dr pilliteri will do what dr kofinas tells him to do... not sure what pilitteri's philosopy is but i think kofinas does order intralipids
Yes. I'm doing them every 2 weeks with Dr. Kofinas. I was just re-tested as well. It's not a complete immune panel because they use Rosalind and Franklin but enough, the NK Assay, cytokines, etc. Kofinas thinks they're more than necessary, not just because of my immune issues but it benefits the placenta. He just told me a story of a woman who stopped them at 30 weeks and noticed regression but as soon as they started them back up, the placenta was much better. Really they're just to prevent inflammation, decrease NK activity and help with the placental damage from thrombo issues.
When I get the results back, I'm still going to have Dr. B take a look at them. 
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| Posted 6/8/12 1:46 PM |
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PennyCat
Just call me mommy :)
Member since 7/08 19084 total posts
Name:
Jib
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
Posted by cateyemm
dr pilliteri will do what dr kofinas tells him to do...
Kinda like a chimpanzee, no? 
Ok.. I just had to ...
I'm running back into my non pregnant cave now! 
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| Posted 6/8/12 3:15 PM |
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KMCGK
Gotta have faith
Member since 7/09 2176 total posts
Name:
Keep the Faith
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
I know you did.
The more relatable metaphor would be a teacher and and a supervisor.
So in respect, you were once a chimp too.
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| Posted 6/8/12 4:02 PM |
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PennyCat
Just call me mommy :)
Member since 7/08 19084 total posts
Name:
Jib
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
Posted by KMCGK
I know you did.
The more relatable metaphor would be a teacher and and a supervisor.
So in respect, you were once a chimp too.
Thanks! As were you!! 
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| Posted 6/8/12 4:09 PM |
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KMCGK
Gotta have faith
Member since 7/09 2176 total posts
Name:
Keep the Faith
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
Posted by PennyCat
Posted by KMCGK
I know you did.
The more relatable metaphor would be a teacher and and a supervisor.
So in respect, you were once a chimp too.
Thanks! As were you!!
Right, still am! I see nothing wrong with it as I pointed out the hierarchy that exists.
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| Posted 6/8/12 5:40 PM |
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PennyCat
Just call me mommy :)
Member since 7/08 19084 total posts
Name:
Jib
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
Posted by KMCGK
Posted by PennyCat
Posted by KMCGK
I know you did.
The more relatable metaphor would be a teacher and and a supervisor.
So in respect, you were once a chimp too.
Thanks! As were you!!
Right, still am! I see nothing wrong with it as I pointed out the hierarchy that exists.
Good for you!
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| Posted 6/8/12 5:50 PM |
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Smiles111
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Member since 12/06 1905 total posts
Name:
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
Posted by KMCGK
Posted by cateyemm
dr pilliteri will do what dr kofinas tells him to do... not sure what pilitteri's philosopy is but i think kofinas does order intralipids
Yes. I'm doing them every 2 weeks with Dr. Kofinas. I was just re-tested as well. It's not a complete immune panel because they use Rosalind and Franklin but enough, the NK Assay, cytokines, etc. Kofinas thinks they're more than necessary, not just because of my immune issues but it benefits the placenta. He just told me a story of a woman who stopped them at 30 weeks and noticed regression but as soon as they started them back up, the placenta was much better. Really they're just to prevent inflammation, decrease NK activity and help with the placental damage from thrombo issues.
When I get the results back, I'm still going to have Dr. B take a look at them.
Thanks! This is very helpful to know.
Unfortunately, I don't have any out-of-network insurance....so don't know if I'd be able to see Kofinas. 
Do you know how much Dr B would charge to look over the results?
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| Posted 6/8/12 6:03 PM |
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Smiles111
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Member since 12/06 1905 total posts
Name:
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
Posted by cateyemm
dr goldstein *might*
dr pilliteri will do what dr kofinas tells him to do... not sure what pilitteri's philosopy is but i think kofinas does order intralipids
thanks!
Is this Jonathan Goldstein at Madonna Perinatal in Mineola?
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| Posted 6/8/12 6:04 PM |
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Re: Anyone have an OB/MFM/Peri who "believes in" immune issues?
Pillitteri , Kofinas and Braverman work in conjuction with each other so they all believe in immune issues. I asked Kofinas to retest me because I wanted to come off them but he said to stay on because Dr. T had me on them for a reason. Dr. T never retests but Kofinas said since we do them every 3 weeks and they are still in our system supressing so it wont be accurate anyway
I would call Dr. T and see if they can send you a script or have you come in and retest. I'm thinking he just keeps us on so long as a precaution and at this point the immune issues don't effect the baby.
I'm on until 20 weeks like you, but Kofinas said he might continue them only if there are placenta issues. He uses them for a different reason than immune though.
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| Posted 6/11/12 8:17 AM |
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