Need Help Finding a Doctor - Intralipids

twintwo · 04-11-2009, 06:09 AM

Can anyone help me out? I am trying to locate a doctor that will enter into a collaborative arrangement with my current doctors at Shady Grove. The next step for me would be a donor egg cycle at Shady Grove in conjunction with Intralipid Therapy. I have elevated NK cells and the recommendation would be Intralipid Therapy...I will not do IVIG. The doctor making the recommendation ordered the testing and discussed the results with me. However, he will not work with my current doctors even though I contacted him from a referral at Shady Grove. After 3 years at Shady Grove, I do not want to start over again at another facility. Can someone tell me the easiest way to get Intralipids and how that process works? Thanks!

poohbear · 04-11-2009, 06:33 AM

Twin,
I responded to you on the other thread.

whitley · 04-12-2009, 09:42 AM

Not sure if I'm hearing you correctly, but do you actually mean there is a doctor at SG who will test for immune issues?! This would be surprising to me since I, too, was an SG patient (although I'm sure you go to the main Rockville location and I'm at one of the other satellites) and I had to leave them and go to a more "open" minded clinic because when I brought up the fact that I thought I had immune issues they "scoffed" at the idea and told me there wasn't enough evidence to support the whole immune issue theory. Therefore, they won't test for them because they don't believe in them. So I would be curious to know what one of the many SG REs you convinced to test you for immune issues.

Anyway, good luck working them them. I enjoyed my time with them until I ran into that roadblock they were unwilling to work with me on. That's when I knew I had to go to a more cooperative RE.

twintwo · 04-12-2009, 01:10 PM

No, you are absolutely correct. I'm in the same situation as you were. I went to an RE in NY and he sent me for testing at Millenova. Based on the results, he is recommending Intralipid therapy but refuses to work with SG. SG doesn't want to have anything to do with the immune testing/treatment. I also go to one of the satellite offices. I live in Pa. My doctor is willing to consult with another doctor that would handle the Intralipid therapy as far as scheduling of the next cycle. I am in the shared risk program and actually have 2 more cycles before I am finished. If I can find someone to write the script and treatment plan for the Intralipids I hope to do one more cycle at SG. Financially/geographically/emotionally, I cannot start over at another facility. Who did you decide to continue treatment with? Maybe I can contact them? Thanks! Good luck to you also.

whitley · 04-12-2009, 05:46 PM

Well, I joined Dr. Beers Immunology Yahoo group at the suggestion of girls who have successfully done IVIG treatment on another board. They told me that there I could find a list of all the REs in every state (plus some foreign countries) who were "immune friendly". I found that in my state there is ONE and only ONE. (Sad but true). She is at Columbia Fertility which has 3 offices (1 in DC, 1 in VA and 1 in MD). Coincidentally, my SG nurse who I loved that was with me all through my first IVF, quit SG and went to work at Columbia. So I took that as a good sign. But I know unfortunately this doesn't help you because there are a far smaller number of docs who do the Intralipid thing and since my CFA RE works with the Beer Center in California which is the premier institute for Reproductive Immunology they recommend IVIG. So I realize that won't apply to you. And I don't know any docs in this area who do Intralipids but I am wondering if you went and saw this NY doc why he just can't write the script and then you can be on your way?

twintwo · 04-13-2009, 06:41 PM

He won't write the script unless I transfer total care to him....I'm very irritated. Thanks for the info on the yahoo group. I'll check it out.

04-11-2009, 06:09 AM	#1 (permalink)
twintwo 0-99 post 2 of hearts Join Date: Apr 2009 Location: pennsylvania Posts: 8	Need Help Finding a Doctor - Intralipids Can anyone help me out? I am trying to locate a doctor that will enter into a collaborative arrangement with my current doctors at Shady Grove. The next step for me would be a donor egg cycle at Shady Grove in conjunction with Intralipid Therapy. I have elevated NK cells and the recommendation would be Intralipid Therapy...I will not do IVIG. The doctor making the recommendation ordered the testing and discussed the results with me. However, he will not work with my current doctors even though I contacted him from a referral at Shady Grove. After 3 years at Shady Grove, I do not want to start over again at another facility. Can someone tell me the easiest way to get Intralipids and how that process works? Thanks!

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04-11-2009, 06:33 AM	#2 (permalink)
poohbear 5000-9999 post king of hearts Join Date: Jan 2002 Location: NYS Posts: 6,330	Twin, I responded to you on the other thread.

04-12-2009, 09:42 AM	#3 (permalink)
whitley 300-399 post 5 of hearts Join Date: Nov 2008 Posts: 360	Not sure if I'm hearing you correctly, but do you actually mean there is a doctor at SG who will test for immune issues?! This would be surprising to me since I, too, was an SG patient (although I'm sure you go to the main Rockville location and I'm at one of the other satellites) and I had to leave them and go to a more "open" minded clinic because when I brought up the fact that I thought I had immune issues they "scoffed" at the idea and told me there wasn't enough evidence to support the whole immune issue theory. Therefore, they won't test for them because they don't believe in them. So I would be curious to know what one of the many SG REs you convinced to test you for immune issues. Anyway, good luck working them them. I enjoyed my time with them until I ran into that roadblock they were unwilling to work with me on. That's when I knew I had to go to a more cooperative RE.

04-12-2009, 01:10 PM	#4 (permalink)
twintwo 0-99 post 2 of hearts Join Date: Apr 2009 Location: pennsylvania Posts: 8	No, you are absolutely correct. I'm in the same situation as you were. I went to an RE in NY and he sent me for testing at Millenova. Based on the results, he is recommending Intralipid therapy but refuses to work with SG. SG doesn't want to have anything to do with the immune testing/treatment. I also go to one of the satellite offices. I live in Pa. My doctor is willing to consult with another doctor that would handle the Intralipid therapy as far as scheduling of the next cycle. I am in the shared risk program and actually have 2 more cycles before I am finished. If I can find someone to write the script and treatment plan for the Intralipids I hope to do one more cycle at SG. Financially/geographically/emotionally, I cannot start over at another facility. Who did you decide to continue treatment with? Maybe I can contact them? Thanks! Good luck to you also.

04-12-2009, 05:46 PM	#5 (permalink)
whitley 300-399 post 5 of hearts Join Date: Nov 2008 Posts: 360	Well, I joined Dr. Beers Immunology Yahoo group at the suggestion of girls who have successfully done IVIG treatment on another board. They told me that there I could find a list of all the REs in every state (plus some foreign countries) who were "immune friendly". I found that in my state there is ONE and only ONE. (Sad but true). She is at Columbia Fertility which has 3 offices (1 in DC, 1 in VA and 1 in MD). Coincidentally, my SG nurse who I loved that was with me all through my first IVF, quit SG and went to work at Columbia. So I took that as a good sign. But I know unfortunately this doesn't help you because there are a far smaller number of docs who do the Intralipid thing and since my CFA RE works with the Beer Center in California which is the premier institute for Reproductive Immunology they recommend IVIG. So I realize that won't apply to you. And I don't know any docs in this area who do Intralipids but I am wondering if you went and saw this NY doc why he just can't write the script and then you can be on your way?

04-13-2009, 06:41 PM	#6 (permalink)
twintwo 0-99 post 2 of hearts Join Date: Apr 2009 Location: pennsylvania Posts: 8	He won't write the script unless I transfer total care to him....I'm very irritated. Thanks for the info on the yahoo group. I'll check it out.