Anonymous wrote:I've cycled with Dr. Davis at Cornell and he has been open with immune issues. I've been working with Dr. Kwak-Kim on the immune side of things.

So he doesn't provide the immune treatment but isn't completely opposed to it?

I've cycled with Dr. Davis at Cornell and he has been open with immune issues. I've been working with Dr. Kwak-Kim on the immune side of things.

Anonymous wrote:I dont know why I suspect immune issues. I have been trying for pregnancy for more than 5 years now and have never seen BFP. It could be the eggs too but I was 5 years younger when I started. Just want to make sure I am clear on immune issues before spending more money. I didnt know CCRM and Cornell didnt test that, so thanks for that information. As someone suggested I can work with RI side by side. I will find out about costs and logistics!
Did you go to SIRM in Vegas? How many trips did you have to make including initial consulting and how long did you stay?

I cycled at SIRM - NYC (not Dr. Sher) and did monitoring here in town. IIRC, we took Amtrak to NY for our initial consult (a 1 day trip), for retrieval (3 days) and for transfer (1 day). Honestly, it wasn't bad at all. If you leave early and schedule appts for the middle of the day you can avoid the cost of staying overnight. I know there are several here who have also cycled at SIRM's NJ/PA offices and been very happy with the doctors there.

If you suspect immune issues, I would recommend doing the most comprehensive testing you can and getting a couple of second opinions on your results, as reproductive immunology is a new (some would say unproven) field and there isn't wide agreement on what works and for who.

I also suspected immune issues after two BFNs (failure to implant) with CGH-normal embryos. I did quite a bit of research into the more well-known RI's working in the USA (there aren't that many of them): Alan E Beer center, Dr. Kwak-Kim, Dr. Coulam, Dr. Braverman, Jonathan Scher, Geoff Sher. First I did a phone consult and very partial testing with Geoff Sher. My results came normal to slightly borderline, if anything, but he was very pushy to say I needed very expensive immune treatments. Since I couldn't reconcile what I was seeing in the tests with what he was saying, I decided to do more testing with someone else. The downside of Kwak-Kim and Coulam is you have to go there to do the testing (Coulam uses her own lab). So I went with the Alan E. Beer center (and in the meantime ordered Alan Beer's book "Is Your Body Baby Friendly?" to learn more about the tests, how to interpret, what the treatments were for each disorder, etc.) The Beer Center is great in that they will order your testing and you can take it to you friendly neighborhood Quest (or other) lab, and that subsequently they will coordinate care with your RE (if receptive to immune treatment) or you (if not). Some of the testing was covered by insurance, some was not. Overall is not cheap (I think I had $1500 covered by insurance and $3500 out of pocket). Some of the testing has to be done through a different lab so I found aplace to just do the blood draws and then shipped. There was a uterine lining biopsy required as well (to test for presence of NK cells in uterus). About 2 weeks later I had a 1 hr consult with Dr. Raphael Stricker at the Beer center who has taken on patient responsibilities after Dr Beer's death. They also emailed me all the results so I can have them in front of me while we consulted. And here is where things fell apart - my results came normal, with a few mild clotting mutations (e.g. a homozygous MTHFR A mutation), no NK cells, etc. and even though the doctor acknowledged that, he still prescribed the exact same protocol they prescribe for everyone else (that's based on the yahoo discussion boards where I had researched the protocols even before the testing), including IvIg (NOT Intralipids), and LIT transfusions which can only be done in Mexico, Greece, etc. since they are prohibited by the FDA. Here is where I decided this made no sense, and requested a second opinion from Dr. Coulam, who said based on the tests there were no immune issues indicated (but of course she said I could do more tests if I came up to Chicago). Between her second opinion and the book, I decided that immune issues likely weren't my problem and made the decision to go with CCRM (who are not into immune testing, treatment, etc. at all).

The danger in the RI field is that after Alan Beer passed away, no one is doing very active research in this area. I have heard Dr. Braverman in NYC does some very experimental treatments with Neupogen, etc. I had a 10 min phone consult with him (that's how much he allows) in which he concluded I needed his help - I was not convinced, and given I would have had to trek to NYC for this and he is known for being hours late for appointments, I thought it best to not follow up.

Good luck in any case, but please tread lightly with the immune issues. I am convinced there are women for whom those are a real problem, but the diagnosis needs to be more considerate than what I experienced in my efforts.

Anonymous wrote:I would not go to Coulam for IVF, just for immune testing and to make a decision of you want to try some immune issue-related protocol with your IVF elsewhere. Her clinic is not known for being at the forefront wrt IVF. (I used to live near her and saw her for an immunology workup. Came back all clear. Cycled with success at CCRM after local failures.). I would either get the immune work up done w someone like Coulam, Kwak-Kim, (even Abbassi?) etc (as much remotely as possible), and see what the results are, and if there's no issue, then go to Cornell or CCRM. If there is an issue, possibly go to SIRM to cycle if they'll be the most supportive of the immune-issue treatment. Or possibly go to SIRM first and only. I have no experience with SIRM, but IMO if rather go to CCRM of Cornell if I didn't have an immune issue, I think their reps are stronger.

Agree 100%

I'm the previous Coulam poster and did cycle at Cornell.

I would not go to Coulam for IVF, just for immune testing and to make a decision of you want to try some immune issue-related protocol with your IVF elsewhere. Her clinic is not known for being at the forefront wrt IVF. (I used to live near her and saw her for an immunology workup. Came back all clear. Cycled with success at CCRM after local failures.). I would either get the immune work up done w someone like Coulam, Kwak-Kim, (even Abbassi?) etc (as much remotely as possible), and see what the results are, and if there's no issue, then go to Cornell or CCRM. If there is an issue, possibly go to SIRM to cycle if they'll be the most supportive of the immune-issue treatment. Or possibly go to SIRM first and only. I have no experience with SIRM, but IMO if rather go to CCRM of Cornell if I didn't have an immune issue, I think their reps are stronger.

Anonymous wrote:

Anonymous wrote:Does Dr. Coulam do immunology as well as IVF?

Sorry - should have said that I did immunology testing with her, not IVF. I did have some (mild?) immune issues, but chose not to formally treat them. I took fish oil (4g/day) in lieu of intralipids. I believe Intralipids are more easily available now though.

I did the implantation failure panel and my DH did the Sperm DNA Integrity:
http://www.milab.us/tests.html

After the results came back I did a phone consult with her.

^ she is based in Chicago

Anonymous wrote:Does Dr. Coulam do immunology as well as IVF?

Sorry - should have said that I did immunology testing with her, not IVF. I did have some (mild?) immune issues, but chose not to formally treat them. I took fish oil (4g/day) in lieu of intralipids. I believe Intralipids are more easily available now though.

I did the implantation failure panel and my DH did the Sperm DNA Integrity:
http://www.milab.us/tests.html

After the results came back I did a phone consult with her.

Does Dr. Coulam do immunology as well as IVF?

FWIW - I did imm. testing/phone consult with Dr. Coulam if you have questions about that.

DH had sperm % DNA fragmentation done as well.

I dont know why I suspect immune issues. I have been trying for pregnancy for more than 5 years now and have never seen BFP. It could be the eggs too but I was 5 years younger when I started. Just want to make sure I am clear on immune issues before spending more money. I didnt know CCRM and Cornell didnt test that, so thanks for that information. As someone suggested I can work with RI side by side. I will find out about costs and logistics!
Did you go to SIRM in Vegas? How many trips did you have to make including initial consulting and how long did you stay?

^^

Forgot to mention that I cycled there twice and had two BFPs after multiple failures locally.

Anonymous wrote:I don't think CCRM supports immunology testing. At least Schoolcraft does not. However, I know at least one patient who did the testing and treatment of some sort with a Dr. Kwak (in CA, I think) before doing IVF at CCRM. She got pg.

This is correct. CCRM does not support immune testing and neither does Cornell. OP, if you truly suspect immune issues, I'd suggest doing a phone consult with SIRM. They're pretty much the only big-name IVF clinic that treats immune problems. They are also much better for AMA than any of the clinics you'll find locally. As PP suggested, you can also consult a Reproductive Immunologist independently while cycling with a clinic like CCRM but this becomes more logistically complicated. Dr. Kwak-Kim (IL), Dr. Braverman (NY), the Beer Center (CA), Dr. Coulam (IL) and Dr. Jonathan Scher (NY) would all be potential options if you want to go that route. If you truly believe you may have an immune problem I would NOT go forward cycling anywhere until you have some testing done.

I cycled at SIRM and the biggest difference I noted (aside from the immunology piece) was the focus on research and innovation. It was clear that not only were they up on the latest studies, they were also continuously tweaking their approach on the basis of those studies. For example, in the course of my own Internet research I'd found an article about improving implantation rates that I emailed to my local doctor, asking if we could try the approach described. She clearly was unfamiliar with the research and said she wasn't comfortable with trying the new procedure. By contrast, my doctor at SIRM mentioned the exact same article to me in the course of our initial consultation (he brought it up--not me) and said he wanted to try implementing the findings into my protocol. It was like night and day.

It was also obvious to me that SIRM's protocols are developed and tailored to the individual, as opposed to the cookie-cutter approach used at many other clinics.

CCRM did a free phone consult for me. If you send them your medical records prior, you really get a lot of specific feedback on your case and they can also give you a feeling for the amounts of time you'd expect to be out there for cycling and testing vs. how much you can do locally. I wrote down a ton of questions and had them all answered well. I had success there (fresh and later frozen cycles) after 3 failures locally.

Anonymous wrote:

Anonymous wrote:What is close monitoring? Do they do u/s everyday and will I be required to stay in NY?
My recent testing is from last year before first ivf and during then thyroid was in range. 2.4 or so. But it was not as low as 1-2. Laparoscopy indicated no endometriosis but this was at least 1 year ago.

They do bloodwork and u/s everyday once you reach a certain point and call you each day with med instructions. And it's an RE doing the u/s. I believe that they meet as a team to review protocols - not sure if that's every day though. It probably depends on protocol, but for me: CD2 and CD4 bloodwork & u/s down here and then CD5 bloodwork & u/s up in NY and then I was there until transfer. I went up on CD6 for a different cycle. You could potentially come home between retrieval & transfer, but I was trying to reduce stress so I just stayed up there. It was a mini-vacation for me and DH.

^ and I was monitored daily from CD5 until ER.