LIT in Mexico, really?

14 Sep

We had our first meeting with the Immunology Treatment doctor today.  I had some issues with the doctor who seemed to be repeating a lot of things we had already heard before and at other times going into great detail about things that we didn’t need to be concerned about.  It seemed like he hadn’t read our records before the meeting which was also off putting.  In the end it sounds like most of our tests came back normal.  He found my natural killer cells were “slightly elevated” and recommended a intralipid infusion to treat it.  He seemed to think IVIG (the really expensive treatment wasn’t necessary).  I was happy with his suggestions that seemed quite reasonable, until he mentioned the last treatment, lymphocyte immunotherapy (LIT).  The treatment takes white blood cells from Mr. Star, washes them and then later infuses them into me.  Here is a fuller description of what it is-lymphocyte immunotherapy (LIT)

It sounds scary already, but the extra fun part is that it is no longer available in the US.  His recommendation was to go to a clinic that they partner with on the US border with Mexico.  I met someone in my RESOLVE support group that did just that.  We all sat on the edge of our seats as she described her experience in disbelief.   I assumed it was for infertility because her issue was that she couldn’t conceive even after IVF and they seemed at the end of the road having tried for 5 years and willing to try anything.
I can’t believe this is what is recommended for me, twice!  Meanwhile we are paying a lot of money for all these tests and for the consultation with this doctor to tell us this stuff.  I would really like to get a second opinion on this, from someone with experience with using immune therapy to treat repeat loss.  I just didn’t feel confident in him.  I also feel really weird about the whole Mexico thing.
I feel like I can’t really talk about it with anyone because it sounds so crazy.  I can’t find much information about it online either.  How safe is it?  Is there any research showing it helps?  The one study I found showed that patients with/without the treatment had the same rate of success (which is what my RE told me long ago).  I am really curious why they stopped doing the treatment in the US.  He claims it exists in other countries, and I have seen evidence that they do it in Europe and Asia (London and Japan, esp.), but  it seems so questionable to do something so out there.
So here I am, feeling a bit stuck on what to do next.  I could try this crazy thing (assuming Mr. Star is up for it) and move forward, or I could just try again the same old way, or maybe we should just throw up our hands and adopt or get a surrogate.  I really don’t know at this point.  With the exception of the one couple from my support group that did it (and they later had a miscarriage after 5 years of not conceiving) I don’t know of anyone else who did, and more importantly anyone else who had any success with it.
It’s Mr. Star’s birthday so I will try hard NOT to dominate our big dinner out at Red Lobster talking about this.  Yes, of ALL the restaurants in the San Francisco Bay Area, Red Lobster is his favorite and where he always wants to spend his birthday.  The funny thing is, the closest one is in Milpitas a good 25 minutes away. Meanwhile there are top Zagat rated gourmet restaurants so close by.  I have to wait until my birthday for those though ;  )
After today’s consultation I was just ready to throw in the towel and say we are at the end of the medical road, but somehow a few hours later I’ve cooled down.  I’ve reminded myself of my gay friends and their kids and how if they can do it, one way or another so can we.  It will happen somehow, just not sure which way at this point.

9 Responses to “LIT in Mexico, really?”

  1. jjiraffe September 14, 2011 at 8:01 pm #

    I love that Mr. Star wants to go to Red Lobster on his birthday even though he lives in foodie heaven. That’s awesome.

    Sorry you’re in this place. All infertility is hard, but recurrent miscarriages seems to be a particularly tough road to be on.

    I do know one Bay Area woman who did do IVIG after multiple miscarriages and it did work. Feel free to email me if you want more details…

    • starfishkittydreams September 15, 2011 at 11:18 am #

      Thank you! Oddly IVIG which I was most worried about was not one of the recommended treatments. LIT seems even weirder to me personally. We’ll keep researching.

  2. Nicole Cantwell September 15, 2011 at 5:43 am #

    I’ve followed your blog for sometime and not posted comments. I just thought I would let you know of a center who deals with recurrent loss, and the founding Dr. believes that Itralipids are just as effective as IVIG and he does not believe in LIT. His name is Dr. Sher you can google him he has been a leader in the immunology issues for quite sometime. You can check out his blog here Sher Institute has a northern california clinic, not sure where they are located, but if it’s not close Dr. Sher practices out of Las Vegas. He offers free phone consults and I’m sure he could help you and your hubby. While they will push to do fertility treatments with the itralipids, I’m sure an IUI would be all that is needed. I hope you can get a consult with him soon, and get some answers

  3. Mo September 15, 2011 at 10:05 am #

    Ok – let me start with Happy Birthday Mr. Star! I don’t blame you. Red Lobster’s cheese toast oozes awesome sauce! (Both literally and figuratively).

    I’m so sorry about all of this confusion. 😦
    I think there’s nothing to do here but trust your instincts. It’s fallback advice, I know. But only you know how far you’re willing to go with your body and resources.

    Sending you HUGE hugs!

  4. Hope September 15, 2011 at 3:28 pm #

    I’m sorry you’re having to deal with this recommendation and trying to decide what to do with it. I may soon find myself in your situation, and even though I’ve thought about it a lot, I’m still not sure what I’d do, if LIT is recommended for me. LIT popped up on my radar very early in my miscarriage research, in the book “Coming to Term” by Jon Cohen. He’s anti-LIT, but the quotes he included from Dr. Beer made so much sense to me, that it’s something I’d at least consider if it ends up being recommended to me.

    From everything I’ve read, the safety and efficacy of LIT depends a whole lot on who does it and *how* they do it. I think Mr. Cohen provides a pretty good description of what it is and how it works in “Coming to Term”, and the quotes from Dr. Beer give the reader a chance to consider his perspective as well. For me, the quotes from Dr. Beer actually convinced me that LIT could be a useful treatment to consider, in spite of the fact that Mr. Cohen obviously thought it was voodoo. However, having to do it in another country does make me pretty nervous. And unfortunately, Mr. Cohen is also the person who pestered the FDA to regulate LIT, which resulted in it now being impossible to get it in the US.

    Another book that talks about LIT is “Is Your Body Baby Friendly?” by Dr. Beer. I found that book really intimidating and strongly biased, but a person might be able to find some helpful information in it, if they were willing to dig for it, and look past the biases.

    HTH! Good luck making a decision about how to proceed.

    And Happy Birthday to Mr. Star!

    • starfishkittydreams September 15, 2011 at 8:40 pm #

      Thank you for your great feedback! While I am not confident in LIT right now, I am still more confident that immune treatments will help me more than IVF with PGD. I feel so naive for not researching this earlier. I worked myself up expecting the treatment recommendation to be fore IVIG, I never thought LIT would come up.

  5. Port of Indecision September 16, 2011 at 6:24 pm #

    I’d read “Coming to Term.” I’m pretty sure LIT was the immunology treatment for which Beer’s only true clinical trial was cancelled by the FDA because the treatment group was having a worse outcome than the control group. I’d be very wary of it; but I also very much do NOT buy into the theory of “Why not try it, it might maybe possibly sort of help,” and prefer to lean on treatments that have been scientifically proven (through the standard scientific process of randomized, controlled studies) to have benefit. Because otherwise…who knows what you’re really getting yourself into.

  6. Another Dreamer September 18, 2011 at 9:21 am #

    I hope he enjoyed the Red Lobster! It was my husband’s birthday on the 14th too 🙂

    As for the LIT, I’ve never heard of it… and I’d feel concerned about the whole “banned in the states, so go to Mexico” thing.

    And about intralipids, many people from my loss groups did those (IVIG/Intralipids) in addition to treatment for clotting disorders and/or immune issues and had great success after many losses. I’m a believer in that for some women, it wasn’t an option for us due to cost/availability but I would have considered it if those factors hadn’t been so heavy on us. Best wishes in whatever you decide to do hun, I know it’s a touch decision.

  7. Andie September 19, 2011 at 10:08 pm #

    Have you visited the Yahoo Reproductive Immunology Group bulletin board? Lots of people on there would have info about LIT, many had done it. There used to be a link on my old blog (the blogger one) but I am sure if you do a google search you could find it.

    I don’t know anyone that has done LIT personally but I know of a few blog friends that have done intralipids and/or steroids with success. Personally I am keen to give intralipids a try but it isn’t the done thing here in Australia. I completely relate to your feeling of being at the end of the medical road and not knowing what to do.

    Thinking of you and hope this helps.

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