Recap: I spoke to a reproductive immunologist last month and he ordered immune tests. He also suggested that I try lupron as a trigger. Most people use lupron to suppress ovulation. If you take it once at a higher dose it will trigger LH.
Lupron Trigger:
On Monday my follie was 17mm, so I took the trigger on Tues. Then today I went in to get my LH and Progesterone checked. I did an OPK and it was the darkest blue ever. Well it turns out that my LH was 41 and my progesterone was 3.9. The Dr said those numbers were great and it meant that my body had a great reaction to it. =) He said that it meant I ovulated, but we will see on Friday.
Immune Test results:
I have been waiting for 3 weeks for this day to come. The Dr. said my immune tests were all normal except my natural killer cells were elevated. They are elevated due to my endometriosis. He said this could cause ovulation issues such as my LUFS and embryo implantation issues. It has taken me almost 4 years to discover this, but I am still glad that I went through napro. If given the chance, I would do napro again because it helped me get to this point. I am overwhelmed at the moment. He is a very smart, busy man and treats women from all over the world, but he does not really have a great bedside manner. He drops this bomb on me and then tells me I have to do Intralipid therapy. When I asked him what it is, he told me to check out his website.....Really????? I paid a lot of money to speak to him and get results and that is what he told me. He only spoke to me for a few minutes. He could have just emailed me what he said and saved me money. Getting my actual test result numbers was like pulling teeth. He kept saying normal, and I wanted to know how normal....I am going to email the nurse and request a copy of my numbers so I can double check them and have them to add to my large file.
Then I started to ask him about the plan for the next few months, such as do I take the same trigger dose etc. I figured that since I had him on the phone and I already paid him a ton of money, I wanted to make some plans.That is when he made it sound like I was already pregnant. He said when you are pregnant.....you will need another dose. I said something again about my plan for the trigger next month, and he said well if you are not pregnant then we have to talk.....I was not sure if he was just really cocky, wanted to squeeze another phone consult fee out of me, or if he was just really confident that his treatment would work....This is his specialty so I guess I have to trust him for now.
In case you have never heard of Intralipid therapy, it is basically a combination of oils that are given through IV. This is supposed to calm down the immune reaction. I am a little freaked out at the thought of filling my veins with oil. The crazy thing is that I try to avoid soy bc of the estrogen and now he is suggesting that I inject it. He said that a nurse will come to my house to do it. I have to check with insurance and see how much this is going to cost.
Has anyone done this? The Dr was so confident that this was my main issue and that this would cure me. I am kinda freaked out bc I kind of gave up hope so now I am afraid to get my hopes back up. I am also not 100% sold that this is my only issue. I am still concerned about my Lufs. He said based on my blood test today that I ovulated. I have an us scheduled for Friday to see if that follie is still there.
I'm sorry the doctor has such a lousy bedside manner, but yay for good levels after the trigger shot. Did Ann do the intralipid tx? I know she works with an RI.
ReplyDeleteWow. I hope everything works too! Know that you're doing the best you can right now. Praying for you as I have no advice :)
ReplyDeleteNo, I did/do IVIg therapy via IV, but for the same reason in addition to a couple of other immune issues. Check with This Cross I Embrace. I believe she did intralipid.
ReplyDeleteI was actually told not to call my insurance company b/c it could flag my file and IVIg is not covered for IF/pregnancy/RPL. (Again, though, mine was IVIG not intralipds). I just called them to get what information/fax number would be needed to get pre-authorization under major medical. It would have to be covered under major medical vs. the prescription side of insurance (they are handled differently). I then gave that to my RI's office. They sent the information to the insurance company, including diagnosis codes. A week or so later, the insurance company sent a pre-authorization letter approving the use for a specified period of time. Oh, and I had a blogger friend who had also seen an RI and done IVIg help me out with all of this as I was a basket case at the time.
That stinks about your Dr's bedside manner. Very smart to get your test results. Always do that.
Edit: Not the exact same treatments, but if you need any help, feel free to email me. buildinganest @ aol dot com
ReplyDeleteHi! I would recommend that you read Is your body baby friendly ? by Dr, Alan Beer or go into the RI yahoo group,
ReplyDeleteIn this book he explains in detail this and other therapies and how they work. I read through all of this by recommendation of JoAnn of Jerusalem my destiny! blog.
Alan Beer in the founder of RI and established most of the protocols that doctors continue to use to this day.
I do not have these issues but I found all of this to be very valuable knowledge specially when facing doctors that do not share your beliefs or that do not have a good bedside manner.
Ann thanks for the info. Do you like your RI? I might want to get another name incase, I really don't like this one.
ReplyDeleteMartha: I read that book becuase you suggested it on the yahoo group. I am also a member of the RI yahoo group. Thanks for the suggestions.
Simone: That's a hard one. Mine is Kwak-Kim. She was wonderful in person and in the follow up telephone consult, but I'm a long distance patient. I had tremendous communications problems with her nurse. Tremendous. I was ready to jump ship and move to another RI in the Chicago area. However, since there has been a new nurse the last couple of months, communication is MUCH improved and I'm happier (and a lot less stressed).
ReplyDelete