Month: May 2009

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So Many Decisions

Dr. Danzer

Dr. Danzer was of the general opinion that there’s not enough evidence that any of the immunology stuff really does anything. He was most concerned about the Humira and said he would not recommend it. He used to give his patients IVIg but doesn’t anymore, his biggest complaint about it is that it is expensive and unproven. He is also concerned about LIT because there’s a small chance that I could contract a crazy disease from my husband that we don’t know to test for yet. He agreed with the Lovenox, baby aspirin, Dexamethasone (although he would prefer prednisone) treatment, as well as the Folgad. He said he also recommends the IVF with PGD, says I’m the perfect candidate.

Dr. Stein

Dr. Stein said she actually brought Dr. Beer to Los Angeles and was one of his biggest champions. She has attended countless seminars, etc. on Dr. Beer’s protocol. She used to include NK’s and all the other tests in her recurrent miscarriage workup. However, she is no longer a believer. She said the results proved to be too random. It would appear to help some, but not others, for no apparent reason. She believes fully that chromosomes are where the problems lie. She thinks that with PGD testing a great number of miscarriages have been prevented. She has concerns about Dr. Beer’s treatment protocol…she is concerned that LIT may cause me to have serious problems later if I need an organ transplant (it would be more difficult for me to find a match). She believes that my problems are the MTHFR / Factor XIII, APA….blood clotting issues. She strongly advises to stick to the problems we have discovered that are known, and leave the immune stuff out of it. She also said that the immune tests always reveal a problem, they are never totally clean for anyone.

Recap

Summary of opinions from four reputable doctors–Dr. Stricker, Dr. Stein, Dr. Chung. and Dr. Danzer:

IVIg – 1 for, 2 against, 1 no strong opinion either way
Humira – 1 for, 3 against
LIT – 1 for, 2 against, 1 no strong opinion either way
Lovenox/dex/aspirin – 4 for, 0 against
Folgard – 4 for, 0 against
IVF with PGD – 3 for, 1 against

Ultimately this is all our decision, as all the doctors said they would support us whatever we decided to do. We think we’re going to first try the Lov/dex/aspirin starting CD6 and wait on the rest. We are also struggling with whether to do IVF…we don’t like the idea of having to decide that some embryos are good and some are bad. We shouldn’t be making that decision. It’s so hard because I’ll be 41 in November and the clock is ticking, it would be so easy to do IVF, look at everything and weed out the embroys that will not make it. But what if one of the embryos tests positive for downs? I don’t want to have to decide not to have that baby. Plus there’s the whole question of when the soul attaches…having this type of power over life makes me very uncomfortable.

Well, we don’t have to make a final decision today. We’re waiting on the lyme results which will come back next week so this cycle is out (if I have Lyme, I’ll have to have antibiotics which I couldn’t do if I was pregnant). So we have a couple weeks to decide the IVF thing.

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More Opinions

Dr. Karine Chung

Dr. Chung is a relatively new RE at USC Fertility, one of the oldest and most well-respected, private fertility centers in the country. So I emailed Dr. Chung to get her opinion on all of Dr. Stricker’s treatments and she called me back a few days later.

She said she does not believe at all in the whole autoimmune/pregnancy thing offered by AEB. Says there is no proof any of it does anything at all. I kind of figured that would be her opinion, but what I really wanted to know from her was, assuming I went through with all of it anyway, what should I be most concerned about….here are her thoughts:

IVIg – She is most concerned with IVIg, stating that there are no studies on long-term effects of the treatment. Says it hasn’t been around long enough. One article I found said it had been around for 10 years, which I agree is not long enough for a “long-term” study. She also said there is a small risk of allergic reaction, which I knew about.

Humira – She doesn’t know what that is. She asked what it was for and I told her it was to treat the high cytokine level. She sort of scoffed like that was ridiculous – would not recommend because hasn’t heard of it.

Lovenox – She would prescribe the same thing considering my positive APA test. Although I tested a few months earlier for APA and the screening test came back negative so they did not run any of the specific tests. She would like me to re-test and see what the result is. Even with a negative, she would treat with Lovenox because of the one positive, but would “feel better” about it if the 2nd test came back positive. Says APA is definitely a cause of recurrent pregnancy loss. Thinks this might be my problem.

Aspirin – same as Lovenox, above.

Dexamethasone – Concerned about long-term use. I told her the treatment would likely end at 10 weeks and then she was not concerned with the treatment because of the short-term use of it. The drug is a Class C (Studies in animals have shown an adverse effect but no studies have been done on pregnant women or no animal studies have been done and there are no adequate studies in pregnant women). But this article says it is a Class D if used in the first trimester (Category D: Studies have shown that there is a risk to the fetus). So…huh?

Folgard – Agreed with treatment considering my homozygous positive for MTHFR. Says incidence of hetero MTHFR is very common and so she would not treat me if I was hetero. But homo is worth treating and so she would agree with the Folgard to increase Folic Acid.

Synthroid – Agreed with treatment.

LIT – We didn’t discuss this specifically. I think because her initial reaction was so strong against reproductive immunology in general, I didn’t bring it up. Although I’m sure she would have the same opinion as the IVIg.

IVF – Does not recommend. She said it is not as easy as Dr. Stricker said, where you can just look at the eggs and see which ones are good. There is a test (Pre-implantation Genetic Diagnosis, or PGD) that a couple years ago the fertility world thought would be the cure for chromosomal miscarriages, but she said that testing since has indicated it is not as helpful as they thought. They test the embryo at day 3 and there are incidences of false “bads” and false “goods.” Also, sometimes an embryo has tested bad on day 3 but then corrects itself by day 5 if left alone. She says IVF is really for people who cannot get pregnant after 6 months of trying, which is not our problem. She told me to save the $10k and try the old fashioned way.

She said she would still treat me if I decided to do everything.

Recap:

  • IVIg – no (very concerned)
  • Humira – no (because doesn’t know what it is)
  • IVF – no (because it won’t help and is costly)
  • Dexamethasone – says it ok to take but doesn’t think it will help
  • Folgard – yes
  • Synthroid – yes
  • Lovenox – yes
  • aspirin – yes
  • LIT – forgot to ask

Message Board

I posted my question about long term risks for IVIg on the message board but did not receive any substantive responses. Also, there are so many differing opinions within the group that it makes relying on anecdotal evidence very difficult. For instance, one woman took Humira to lower her cytokines and it increased them so she skipped it the next time and got pregnant. Another woman tried everything except Humira and kept miscarrying, she was sure it was because she hadn’t done the Humira. My SIL couldn’t take Humira because of the TB test and she had a healthy boy. But why would Dr. Stricker prescribe Humira if I didn’t need it? Oh, so confusing.

Dr. Andrea Stein

Dr. Stein is a fantastic Dr. who no longer practices OB / RE because of a wrist injury that prevents her from doing surgery. I went to her for treatment for horrible cramps and she was the only doctor in 25 years who was able to help me. She was my Gyn up until the first pregnancy and then I started seeing Dr. D. as my OB. But I still defer to her for second opinions because she is awesome.

Her short opinion via email is that genetic problems cause most miscarriages. She agrees that I might have some other underlying problems but thinks that we should talk with a couple of the exceptional IVF doctors with copies of my labs in hand. She cautioned that there are dangers to some of the treatments, adding that she has actually witnessed them. She was not more specific, so we have decided to make an appointment to see her to learn exactly what she’s referring to. We see her next Friday.

Dr. Hal Danzer

About 15 or so years ago I was an egg donor. My doctor for the retrieval was Dr. Danzer who is one of the most respected fertility specialists in Los Angeles. We made an appointment to see Dr. Danzer next Friday morning (just before our Dr. Stein appt.). He takes my insurance, yay! [UPDATE: but the insurance doesn’t pay for squat….still waiting for a bill of ~$500.00]

Side note about the effects of miscarriages

The first time I got pregnant I assumed everything would be fine. I had NO IDEA that there was a possibility of a miscarriage. My how things have changed…the other day we were watching Baby Mama and at the end (*spoiler alert*) the doctor announces she’s pregnant. My first thought was not “oh, that’s so exciting!” it was “well that doesn’t mean much.” I’ve turned into such a pessimist…I think that’s a bad thing. I need to find a way to be optimistic. I think it’s crucial. I want to fast-forward this blog to the final entry–the picture of the healthy baby/babies with the title “Finally Here!” If I just knew that was what was at then end of this for us it would be so much easier to endure all the questions, decisions, medications, procedures. If anyone has any ideas…..

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I don’t have TB

Time to celebrate I guess. I do not have TB. So I guess the Humira is a go.

AND, Dr. D’s nurse agreed to draw my blood for the Lyme test tomorrow morning. More drawing, more FedExing.

I started the Synthroid this morning. I don’t feel thinner but I do feel like I may have had a bit more energy today. It’s probably in my head, but who cares.

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Purpose

I’m hoping that writing this blog will help me to be less crazy. I’ll let you know how it goes.

I’m 40, married. I am a new patient of the Alan E. Beer Center in Los Gatos–more specifically, a patient of Dr. Raphael Stricker–for the purposes of having a baby…hence the name of this blog. I plan to document my trip on the AEB train here, partially to help others who are considering jumping on, and partially to get all of this out of my head (see comment re: “less crazy,” above).

How I Got Here

At 39 I started not trying to not get pregnant. After 4 months, a positive test. We told 20 people. After the first ultrasound at 6 weeks, my OB Dr. D. said the baby was not growing as much as it was supposed to. He said to come in next week for another ultrasound. At that ultrasound, we saw a heartbeat! But still not growing at the rate it should be…and not really looking right either. He said come back in 4 days for a definitive go or no go. After an extremely long weekend, everything was smaller than it was before…the worst sign. I had a D&C that Friday at 8 weeks. Dr. D. said to keep trying, odds are in my favor that the next time would be just fine. Strangely, it seemed like everyone I talked to said they had a miscarriage before having their lovely boy or girl. I was sure next time would be fine.

Five months later another positive test! Although I was certain this one would work because we had gotten our miscarriage out of the way, we only told 5 people. But before I could have my first ultrasound, I miscarried at 5 1/2 weeks. Doctors charmingly call this a “chemical pregnancy” because it happened so early and was never confirmed by a blood test or ultrasound. Regardless, I had been pregnant, had felt all of the pregnancy symptoms, had already started picking names like an idiot, and now was not pregnant…again. Dr. D. said to keep trying, odds are in my favor that the next time would be just fine…buuuut that’s what he said the last time. I asked for some blood tests…I didn’t know which ones, but I was sure there were some that I should be having. So Dr. D. ordered some and told me the results were all good. Keep trying.

Two months later I felt pregnant again! I just knew I was, even though it was too early to test. But then, a few days went by and the symptoms went away and I got my period. Even without the test, I knew. But maybe I was insane…starting to make things up like an insane person. This is how the mind plays…what fun the mind has.

Two months later another positive test! We told 2 people. But before I could have my first ultrasound, I miscarried at 5 weeks. Another “chemical pregnancy.” Dr. D. said to keep trying, but in the meantime maybe I should see a fertility specialist. He referred me to Dr. C. He added an optimistic “at least you can GET pregnant!” I hated that….the goal is not to get pregnant, the goal is to have a baby. It’s an insensitive remark. Try not to use it yourself.

By the time I got in to see Dr. C., I was pregnant again. I took a blood test that day and the HCG was only 9. So I was pregnant, but then not so much. I started my period the next day, which was at almost 5 weeks.

Dr. C. ordered an HSG (where they shoot dye into your girl parts and take xrays) to make sure my uterus was normal which, by the way, sucked. Very painful for me. And the f-tard radiologist that performed the test was an inconsiderate a**hole. Dr. C. also ordered a chromosome analysis of both me and my husband to make sure that we could actually have a kid together. $2,000 later, both tests were normal. Dr. C. diagnosed us as being in the “unexplained infertility” category and said we should just keep trying, eventually the odds were that we would have a “viable pregnancy followed by a live birth.” Live birth. That sounds weird.

This diagnosis and advice just didn’t seem right to me. Not to mention the thought of going through the “pregnant…..not pregnant!” rollercoaster again made me want to hurt someone. It was wreaking havoc on my body and on my psyche. I get all excited for a week or weeks and then am totally depressed. It’s an impossible situation.

AEB Clinic

My sister-in-law had suffered through 3 miscarriages and then found the AEB Clinic. After treatment with them, she had a beautiful baby boy. Although she said she could never be 100% sure that their treatment resulted in their boy because of all of the opposing opinions regarding immunology and pregnancy, it obviously didn’t hurt. She mailed me the book and I signed up online. I mailed my medical records and waited.

After having received everything, it only took a little over a week for AEB to call me with instructions about what tests I had to have. They emailed me a bunch of test slips for blood work…some I could get done at a lab locally, some had to be done at their lab which meant I had to have my blood drawn and then FedEx it to them priority. That’s right, I had to FedEx about 30 vials of blood, some my husband’s, most mine. They also wanted me to do an endometrial biopsy which is alleged to be more painful than the HSG. I opted to wait on that one.

Blood Tip

It’s not easy to find someone who will draw your blood and then give it to you. Most labs will not do it. I had to coax the nurse at Dr. D’s office to do it for me. But first I had to call Dr. D’s lab and have them send over all of the vials that I would need because there were so many and Dr. D’s office didn’t just have them lying around. Dr. D’s nurse drew the blood from me and my husband and then I had to write our name, date and time, and roll up each vial in a paper towel and put them all in a zip-loc bag. Then I wrapped the bag in bubble-wrap and put it into a box along with the test slip and my credit card info.

FedExing Blood

We tried to do it the right way, we called FedEx ahead and told them what we wanted to ship. They told us we could go to the “hub” and do it from there. So after we had all of our blood drawn, we get to the hub and they tell us we needed the “dangerous goods” expert and he wasn’t there and wouldn’t be there until after the cut-off for that day’s shipment. I wasn’t about to have 30 vials of blood drawn again, so we went to a different FedEx and kept our mouths shut. We went out for a celebratory cocktail and the blood arrived just fine the next day. My husband got worried the last time we did this, because the FedEx label specifically says we’re shipping to a lab. But they don’t ask what it is and I don’t tell them. I also didn’t fill out the part where it says “are these dangerous goods”…both times so far the FedEx employee just checked “no” without even asking. So maybe not totally ethical/moral, but did I mention I would have had to re-draw 30 vials of blood? I’m not condoning the practice, just recounting my story.

Dr. Stricker Conference Call

It took about 3 1/2 weeks between shipping blood and having my conference call with Dr. Stricker. A couple days before, AEB mailed me the results of all my blood tests, just enough time for me to drive myself crazy on the interwebs trying to figure out what it all meant. But it was worth it because while I was 100% wrong on one or two of the tests, I had a lot of information and was able to ask informed questions while I had the Dr. on the phone.

Another tip…record the phone call. I have a Mac and I opened up Garage Band and started a new track. I put the phone on speaker and held it near the internal mic on the computer (full credit on this one goes to my husband, the genius). There were so many things he said that I just couldn’t remember afterward, even though I was taking notes. It was so great to be able to go back and listen to what he said. By the way, he was really great. He didn’t go over each test, he just started off by telling me each of my diagnoses. Then he told me his suggested course of treatment. When he was done (about 25 minutes later) he asked if we had any questions, which we did…many. He was very patient and answered all the questions we had. I like Dr. Stricker.

My Diagnosis

  • positive for two copies of the C677T mutation
  • positive for two copies of the Factor XIII V34L Gene Polymorphism
  • Thyroid Peroxidase antibody = 318
  • positive for Anti-Phospholipid
  • Antibodies – IgG-Cardiolipin
  • Anti-ssDNA = moderate positiveAnti-Histone = weak positive
  • Leukocyte Antibody Detection Test = TCells IGG = 5.9%, BCells IGG = 14.2%
  • Natural Killer Cells = too high
  • TNF/IL10 = too high

This all means that my blood clots too much, which could have caused the miscarriages…blood not being able to get to implanting baby causing it to sort of die on the vine, so to speak. I also don’t have enough of the antibodies that I’m supposed to have, which could have caused the miscarriages…my body was attacking and killing my baby. I really think that with all of these problems I never would have had a healthy baby, no matter how many times we kept trying. Such a tragic alter-universe.

My Protocol

  • 2 cycles of Leukocyte Immunization Therapy (LIT) to boost my TCells and BCells (antibodies)
  • 2 shots of Humira to suppress cytokine production (whatever that is)
  • daily Synthroid to get my thyroid in range

Levels should be ready for baby-making in two months. Not 3 weeks ago I came across a stash of condoms and considered tossing them, thinking “what could we possibly need these for?” For some reason I kept them anyway. Good thing.

On Cycle Day 6:

  • IVIg treatment to lower the NKCs (Stricker’s opinion this is the most important thing of all for me)
  • Lovenox 1x day (bloodthinning)
  • Baby Aspirin (bloodthinning)
  • Dexamethasone (bloodthinning)
  • Folgard (MTHFR makes it so I can’t process folic acid properly…this is mega-folic acid dose)
  • Progesterone (because why not)
  • Prenatal Vitamin (of course)

Positive Pregnancy Test:

  • Another IVIg and every 3-4 weeks through first trimester Lovenox increases to 2x day
  • aspirin, Dex, Folgard, Progesterone, vitamin, Synthroid all continue

More Blood Tests

Following Dr. Stricker’s call, more test slips from AEB. My husband and I each had to have 3 more vials drawn and then we FedEx’d them to Chicago to test for DQ-Alpha. They used to do this test in the first run of blood work, but now they only do it for people who need LIT, which we do. We also had to both get tested for a battery of infectious diseases in preparation for the LIT. We did all that yesterday. I also had to get a TB test because Humira can like kill you or something if you’ve had TB.

Lyme Disease?

Dr. Stricker also thinks I may have Lyme disease, which is weird. So I have to get tested for that. That’s a whole process because not only do I have to find someone to draw my blood and give it to me so I can ship it to IgeneX lab in Palo Alto, the blood first has to be either “spun” or “separated,” something I am evidently unable to do myself. I’m talking to Dr. D’s office about helping me with that now…ah, blood is fun. If I have it, I’ll have to do at least 2 weeks of antibiotics…not sure how that will mix with the Humira which suppresses the immune system. Will get more info. if the test ends up positive.

IVF?

Dr. Stricker also suggested we do IVF because of my, ahem, age. He said that my egg quality might be bad and even if everything else works, I could miscarry because of a bad egg. If I do IVF, they can look at the eggs and pick the best ones to increase the odds that things will work the first time. Otherwise, I will have to take all these drugs for 3 weeks until I get my period and then start all over again a week later…sounds daunting. We’re not sure yet what we’ll do. Cost is definitely an issue considering I was laid off in March, and Dr. C’s office hasn’t gotten back to me on what IVF will cost. I’ve heard anything from $10k to $100k.

Sister-In-Law

I’m so grateful for her help in this. I wouldn’t know about AEB without her and would just “keep trying” like the other doctors said to do. I am also grateful for her insight and information. She and her husband are smart, educated, level-headed people who don’t just go off doing crazy things. Their insight and advice has been invaluable and I wish everyone knew someone who has personally gone through the AEB process successfully. The message board is helpful but doesn’t really have the whole process in one place. It’s mostly just specific issues as they come up. Hopefully, even if you don’t have a SIL like mine, the first-person account on this blog will make you feel like you do.

Next Steps

So I’ll start on the thyroid medicine tomorrow which will hopefully increase my metabolism and make me less depressed. Now we wait to see what the blood tests say and when we can go to Mexico for the LIT. Such a great time to go, what with the swine flu and all. Very exciting.