I haven't been active on the group in recent months, but I wanted to be sure to post this success story: My son Quinn was born two weeks ago, on Sept 16, and is doing exceptionally well (as am I). With his birth comes the end of a three year effort to have a second child 鈥� which has been a long and painful journey for us, but I realize is short compared to the trials many of you are going through now. I hope my story helps someone, if only to renew your belief that immune therapy works. Sorry this is incredibly long鈥� Feel free to skip the "HISTORY" section if you're just looking for thenuts'n'bolts of
<br/>what my diagnosis & treatment was. 飦奌ISTORY:I'm a "secondary miscarrier." My daughter was born 4.5 yearsago; we conceived the first month we tried, and the pregnancy was uneventful except for lots of hints at an early birth 鈥� dropping at 32 weeks, contractions at 34 weeks, fully effaced at 38 weeks. Ironically she was born a week late. I wonder if those signals were hints that my body was trying to expel the baby early, that my immune system was starting to reject it, but that's just a theory. FWIW, there were none of those signals with my DS.After my daughter's birth we waited a little over two years before TTC for a second child. I was 33 at the time. I then had 4 consecutive miscarriages. Each time we conceived within 3 months of trying, usually the first month. The first miscarriage was in Jan 2006 at 4 weeks; I hadn't even taken a pregnancy test yet,
<br/>but I knew it was a miscarriage. In retrospect, I believe that was a chromosomally abnormal pregnancy because it didn't match the rest of the miscarriages, which all occurred at 8-10 weeks gestation but showed less than 7 weeks growth. I remember thinking after that first miscarriage that I'd "joined the club" of all my friendswho'd had miscarriages. Little did I know what was coming next鈥e waited several months to try again, and conceived in May 2006. I started spotting and then bleeding July 4 and went to the doctor the next day to find there was no heartbeat. I hadn't been to the doctor yet since I was only about 9 weeks pregnant, so we couldn't be sure there had ever been a heartbeat (though I am certain there was). It measured only around 7 weeks, so we assumed we'd been wrong about the date of conception, or that it had stopped growing two weeks earlier. I saved tissue from
<br/>the miscarriage and took it to my OB, but the lab screwed up and was unable to test for chromosomal abnormalities.We accidentally ended up pregnant at the next cycle. I knew that was not ideal so I called my OB and she put me on baby aspirin and progesterone just in case they helped. We had an ultrasound at 6-7 weeks and saw a heartbeat. Again, the gestational age was less than I'd calculated but again we wrote that off as a miscalculation on our part. I had a little spotting one night at 10 weeks, and though it cleared up the next morning I went to the OB anyway. There was no heartbeat, and the baby measured only a few days larger than it had on the previous ultrasound 鈥� around 7 weeks. I had a D&C, but the lab 鈥� a *different* lab 鈥� screwed up and again no results were available.At that point I knew something was wrong. I know miscarriages are common but the odds of
<br/>three miscarriages in a row being random chromosomal abnormalities were too low. My OB put me through her array of tests and everything came up showing I was perfectly healthy and my husband's sperm were great.We took several months off again, due in part to the fact that we were moving to another city. Before I found us a place to live, I had my OB picked out and a first consultation with him scheduled! He was a high-risk OB, and his battery of tests was more extensive. I passed them all. He shook his head and told me all he could advise was to try again, the odds were still in my favor. So we tried again and immediately conceived what would be our fourth miscarriage. That was January 2007.DIAGNOSIS:At this point I found the Beer book "Is Your Body Baby-Friendly" online and ordered it. I had low expectations that it would be useful to me; I come from a pretty darn healthy
<br/>family with no history of immune disease. The book arrived about 2 days after we conceived, and it was clear to me after reading it that it could easily be the answer: It described the slow growth that accompanies the starving of the trophoblast, and I finally realized that the low gestational measurements in my two previous miscarriages were not indications of a miscalculated conception date or of the death happening weeks before the spotting started. The book noted that patients often have super-immune symptoms, and I realized that in the last two years I'd been impervious to all the illnesses my daughter brought home from daycare; my husband and daughter would get sick, but I wouldn't. The book mentioned that many women get flu-like symptoms on the day of implantation, and I remembered that had certainly happened to me with the previous pregnancy, and with the pregnancy that implanted as I
<br/>was reading the book, I had one day of flu symptoms that went away quickly 鈥� and no one else I knew got sick.I made an appointment with Dr. Matzner at RIA since he was in LA, where we now lived. He diagnosed me with low LADs 鈥� 1.1% T-cells and 3.8% B-cells, and they found that my husband and I were both 4.1, 4.1 鈥� a complete match, so my daughter must also be 4.1, 4.1, hence the low LADs. My NKs were normal at 4 weeks but rose at 6 weeks, indicating they were fighting the pregnancy. Matzner doesn't recommend LIT but rather treats low LADs with additional IVIg, so I had a dose of IVIg at 4 weeks and again at 6 weeks. (I should note, my LADs did rise with IVIg 鈥� T-cells from 1.1% to 60% and B-cells from 3.55 to 14.8%.) I also went on baby aspirin, heparin, and prednisone. Matzner told me up-front that my chance of success with this pregnancy was only 40%; I needed to have been treated
<br/>earlier than 4 weeks. My OB did weekly ultrasounds, and the pattern was clear by 7 weeks 鈥� the growth was slower than normal. We had a good heartbeat at about 6.5 weeks, a weak heartbeat at 7.5 weeks, and no heartbeat at 8.5 weeks. I had another D&C. Finally the local lab got it right and showed no chromosomal abnormalities. I also sent a specimen to a specialist, Dr. Salafia, that Matzner works with in New York (in the middle of a snowstorm, delivered on a Sunday but the lab was open 鈥� thank God!) and she confirmed there was a starving of blood flow to the placenta.Surprisingly, aside from the first miscarriage which was so early and was my first, this was an easier miscarriage to recover from emotionally because I finally had an answer, and that miscarriage was evidence. It proved the slow growth, it showed the increase in NKs as the immune system ramped up, it verified
<br/>the blood flow was being cut off, and it all happened to a pregnancy with no chromosomal abnormalities. Clearly my immune system was attacking the pregnancies.I switched to the Beer Center and Dr. Stricker at that point because I felt I needed LIT and because I was unhappy with Matzner's office staff. The staff at the Beer Center is phenomenal, and as much as I interacted with them, that helpfulness and efficiency was incredibly important to my sanity and calmness as I went through the process.TREATMENT:Beer Center found a few other things in addition to the low LADs and DQAlpha match: 鈥� high TsH of 1.7 so I started 25 mcg synthroid鈥� low serotonin levels so I started 10mg lexapro (heh, that made the wait to be cleared to TTC a bit easier)鈥� PAI-1 homozygous which underscores the need for Lovenox in the first trimesterI was diagnosed Category 1, 2, and 5.I
<br/>went to Nogales for LIT four times because DH & I were cautious about using donor blood, and we knew the original protocol when LIT was available in the States was to try paternal first and if it didn't give sufficient response to attempt paternal+donor. Well, two paternal doses didn't do it so we went back for two paternal+donor. Happily we managed to have the same donor both times and made friends in the process 鈥� with Gina & Kevin who are now in the third trimester with their pregnancy! (Thanks again, Kevin!) My B-cells went up to 16.5% after the two paternal doses, and 57.6% after the two paternal+donor; five months later, when I was 4 weeks pregnant, they were at 71%.My TNF was high, 34.4, so I did one round of Humira and it went down to 28.9. Five months later, when I was 4 weeks pregnant, it was 24.2.My NKs were normal again but I did IVIg during the conception cycle
<br/>the first two months we tried. At that point Beer Center decided I didn't need to do IVIg during cycles, so I stopped. I was cleared to TTC in September 2007. My protocol was as follows:* Continuously, take baby aspirin, 25mcg synthroid, prenatal vitamins, Folgard, Calcium 1000mg supplement.* IVIg on CD6-10 (did this the first two cycles and then stopped as mentioned above)* 30mg Lovenox, 1mg Dexamethasone starting CD6* Progesterone starting CD16It took longer to conceive than previously 鈥� 4 cycles which sounds like not too long but patience isn't one of my stronger virtues. In January 2008 we found out we were pregnant, but as you all know, the journey doesn't end there.I increased the Lovenox to twice daily and stopped the Lexapro as soon as I got the BFP, then tapered off the Dexamethasone at 12 weeks. My TsH went up to 3.4, so my dose increased to 50mcg synthroid.
<br/>My progesterone levels were always just below normal, so they kept increasing my dosage (and with it, the nausea). I found out late in the game that progesterone levels vary during the day, and I was always testing at the same time of day and taking the progesterone at the same time, so I think I didn't actually have an issue but rather was testing at a bad time. When I changed the time of day, the numbers went higher. Eventually I was on 400mg progesterone (in pill form) a day. I tapered off by 16 weeks. In the first trimester, Beer Center did HCG & Progesterone tests every 3 days, and my OB did weekly ultrasounds. Everything looked great 鈥� and the growth rate was always on target! I was also doing monthly NK and APA tests. My NKs stayed in check, and my APAs showed only a few positive or borderline at 4 weeks, and then were negative at 8 and 12 weeks then back to one positive at 16
<br/>weeks.Then at 20 weeks things seemed to spike. My NKs shot up from 11-14 (50:1) to 24.1, and I suddenly had 5 APA positive/high positives. I'd gained weight, so my Lovenox dosage increased from 30mg to 40mg (still twice daily). I had IVIg for the NKs. The ultrasound I had at 21 weeks looked great, which made me feel better. A spike at 20-24 weeks is apparently not uncommon, and the book does mention that fact.My 24 week tests showed my NKs were back to 12.8, and my APAs now had only one positive. At 28 weeks NKs were 14.7 and APAs were all negative. I was cleared to stop the Lovenox then, but I was hesitant so I tapered down very slowly and discontinued at 34 weeks. By then I was doing biweekly ultrasounds and asking the tech every time to look for clots on the placenta, and she always said she didn't see any. Blood flow through the cord was great each time,
<br/>too.SUCCESS!Everything was normal after that 20-week spike, though of course I was nervous right up until labor was over and I held Quinn in my arms. My OB said the placenta looked just fine 鈥� no graininess, no clots. He's definitely a health boy, weighing in at about 8.5 lbs, and already I'm playing the proud mama and finding ways in which he excels (already holding his head up and fixing his gaze on things!).In the end I believe LIT was the answer 鈥� and we came so close to not doing it b/c we had to go to Mexico for it and it just seemed like such a desperate measure (though it turned out not to be bad at all)! As it was explained to me in layman's terms, LIT boosts the number of antibodies whose job it is to mask the father's proteins on the baby; without being masked, the NKs would identify the baby as foreign matter (a cancer) and attack the baby. When I got pregnant, the
<br/>presence of those antibodies meant that the baby was protected. My NKs never went up. Well, except for the 20-week spike which I think is perhaps something natural and possibly harmless; I wonder if women who don't have immune issues also have that spike but it's not detected. In my pregnancy, none of the OB tests showed any change around 20-weeks; just the blood tests for NKs and APAs.So, for those still reading, I hope some of this is helpful in one way or another. I'm so glad to have had this forum and the advice of so many wonderful, smart, empowered women who've taken control of their own treatment despite all the OBs and REs out there who can't seem to open their minds and their eyes to the possibility that immunology might play a larger role in pregnancy than studies currently show. When I told my OB that I had been diagnosed with immune issues, he was obviously doubtful but respectful
<br/>of my decision; he said he was familiar with Dr. Beer's work and that Beer had "helped women when no one else could." Because I'm in CA, Iused Dr. Stricker for all prescriptions and tests so my OB didn't have to do anything outside his normal protocol for high-risk patients, but I gave him copies of all my immune tests and talked to him about it, and I know I educated him on why some of the treatments work. I'm not sure he's an advocate yet, but I know I got him to open his mind a little more and admit maybe this isn't all hogwash. He has at least two other patients right now who are being treated for immune issues as well, too. The more we chip away at the OBs and REs, the sooner the needed studies might be done, and couples can be diagnosed sooner, and insurance will begin to cover more of the expenses. I only wish I knew how to speed that process along鈥�------------
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