Autoimmune/infertility support and 2nd opinions

My friend unaffected @ for we are bound by symmetry told me about this great group on yahoo. I would recommend it to anyone dealing with autoimmune issues. Do any of you know of any other good groups?

I’m checking into 2nd opinions with other doctors that specialize in autoimmune/infertility issues. There aren’t a whole lot. I called Dr. Kwak in Illinois, and they don’t do initial first consults over the phone. I’d have to drive there, which it isn’t TOO far. They WILL do correspondence over the phone after the initial meeting.

I also called The Beer Institute in California (wayyy to far for me). They DO phone consults, but it costs $600!! Yikes! We will have to think about that one. I know they are pretty renowned, so we won’t rule them out.

Does anyone know of any other good docs that specialize in this area of infertility? Have you seen or spoken to anyone other than Dr. Sher? If so, what was your experience/opinion? Thanks in advance.

I REALLY recommend to anyone dealing with long term infertility and/or losses to get a full work up for autoimmune issues. You can have a free consult with Dr. Sher, who will then order your testing if need be. Dr. Sher’s blog is very informative and helpful, too.

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14 thoughts on “Autoimmune/infertility support and 2nd opinions

  1. I know 2 people working with Dr. Kwak-Kim who have been very pleased, and are now both pregnant. I know another girl who after several miscarriages carried to term with Dr. Kwak- Kim as well. I do know someone else who went to a doctor in California (not at Beer- I forget the name) but I am guessing that is still far.

    I believe Dr. Kwak-Kim may have trained at the Beer Institute.

    Keep this in mind too, if you do get pregnant with them and are on treatments, you may need to be going weekly for treatments, the entire pregnancy. So someone drive-able might be a worthwhile option.

    Good luck!

  2. I’ve done a bunch of research into the autoimmune stuff, and those are the exact two that I would recommend as far as top docs that are specialists in immunology. Also, have you read Dr. Beer’s book? It’s called, “Is your Body Baby-Friendly? Unexplained Infertility, Miscarriage & IVF Failure – Explained.” It reads a bit like a textbook, but it’s very informative and helpful.

    I considered going to Dr. Kwak-Kim, but the trip to Chicago seemed cost-prohibitive, as the trip to LA to Beer’s clinic. (Dr. Beer is dead, but he started a center that carries on his work.) And the free phone consult by Sher was obviously attractive, plus I know someone IRL who had IVF with him and highly recommends him. But I also agree with the previous posters – check out Kristi’s blog, she has great things to say about Dr. Kwak-Kim. Good luck in your searching!!!

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  4. I don’t have any docs to recommend as I’m no where near there, but the BEER institute? I totally thought you were going somewhere else with that… that does not sound a like fertility clinic. I wonder if they have a sense of humour about that??

  5. Hey Lisa,
    I am just catching up…I’ve been avoiding blogland lately. I am so sorry that the news you were told was not encouraging. I can’t imagine being told what you were told. C and I looked at Dr. Kwat and heard wonderful things, but us too can’t afford to travel there for the initial consult and then quite often as they require afterwords.

    We have thought about using a surrogate as well, but the cost is oh so high! I can’t wrap my head around spending that much on a ‘what if’ and also knowing someone else is carrying our baby. But, it would be an option to have a biological child with only giving up the pregnancy part. With the genetic match (DQ-alpha I am guessing?), are the chances surrougacy working still good? I am not familiar with that aspect of it.

    I am thinking about you and sending you strength. I know this in-between and ‘what are we going to do next’ stage is terrible 😦 I feel ya.

  6. Hey Lisa,
    When I first started going to an RE, I tried a place called the Reproductive Medicine Institute of Chicago. I didn’t personally click with Dr. Coulam or the nursing staff I saw there, but I know Dr. Carolyn B. Coulam (http://www.illinoisivf.com/physicians.html), is supposed to be an expert in recurrent pregnancy loss and I know she is very involved in the area of autoimmune/infertility issues. The lab they use is costly, but chances are good you’ve already covered all the testing and could just transfer your records.

    Dr. Coulam was the one who diagnosed me with MTHFR and I’ve continued my prescription Folic Acid even though my other RE didn’t really seem to think it necessary. Interestingly enough, I recently found out that my dad also has trouble with absorbing Folic Acid and his doctor put him on supplements. I don’t know anything about these genetic mutations, but I took that as a sign that I should definitely be giving myself and baby the extra Folic Acid boost.

    Basically, she’s a little eccentric, and I didn’t like her staff, but she might be a great and very knowledgeable person to get a second opinion from.

  7. Hi! Long-time reader, first-time poster πŸ™‚

    background: we’ve been trying for a little over two years now. I’m 38, my wife is 41. she had a couple miscarriages with her previous husband and one with me (a “blighted ovum”). we’ve done IVF three times through various clinics in San Francisco and IUI a whole lot of times. she also had some massive fibroids — one was something like six inches long and three inches wide and three inches high — that got removed about a year ago. as far as we know I don’t have any major fertility problems (my percentage of mutant sperm is a bit high but my sperm count is very high so that makes up for it, I guess).

    this past month we went to see Dr. Zouves (http://www.goivf.com) and he diagnosed her with autoimmune problems and gave her some intralipid injections. we hadn’t gotten around to starting another IVF cycle mostly because of financial reasons but we did Clomid and IUI. only got two eggs from Clomid so we were going to skip the IUI but she insisted. we saw the heartbeat today for the first time πŸ™‚ πŸ™‚ πŸ™‚

    I think Dr. Zouves does a free consultation. the medication and testing are not cheap though and it’s not covered by insurance either, so we have a lot of credit card bills we’re trying to pay off, but it’s worth it right now πŸ™‚

    good luck!

  8. I have been reading along for quite awhile. The news sucks but glad to hear that you have some options. Seems like about the same options we had however we were told given that I had lost so many pregnancies not to even go the route of IVF.
    You will probably be sick to your stomach to hear that I am currently pregnancy with twins due to no ART at all, no meds…nothing. I am however on a crap load of other meds though.
    My peri worked with Dr. Kwat and several others of the Chicago area docs. We were headed that way if I would not have gotten pregnant this time. I just didn’t know where to turn after our 20w loss in February. I will look at my notes and see, there is a doc in Chicago that a few other docs have said absolutely stay away from. I will find that info and email you personally with it.
    I hope one of your options works out. I know how badly autoimmune issues SUCK!

  9. Here from LFCA. I’m so sorry about your losses and your diagnosis and the difficult decisions it leaves you facing.

    For whatever it’s worth — some years back, I too had a consult with Dr. Sher and got some modest auto-immune dx’es, nothing like what you’re facing. I ended up consulting locally (for me) with Dr. Megan Clowse at Duke in NC. You could google her and see her expertise, etc. I found her well-informed, kind, and thoughtful; she wasn’t convinced I had issues that needed treatment but understood why after several failed IVFs I needed to be able to make a clear and well-researched decision about how to move forward. Most (perhaps all) of what she did was covered by my insurance, in part (I think) because it was classified as a rheumatology consult, not infertility. In the end for me, she felt I had nothing diagnosed and treatable; I did achieve a healthy pregnancy via IVF in part (I think) by being really aggressive about treating my auto-immune hypothyroidism (working with a different doctor, a thyroid specialist), but nothing more.

    I see you may be moving on to other paths — surrogacy — and hope whatever you decide it will bring you the family you are seeking to grow.

  10. I’ve heard of a Dr. Silber in St. Louis. He seems to be on the front lines of new infertility treatments. I’m not sure if he deals much with auto/alloimmune disorders, but it might be worth contacting him to see. Here’s the website where you can find some information: http://www.infertile.com/

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