Reproductive Immunology Success Stories
The following stories are from real women, and their personal experience, they should not replace the advice of your consultant.
“I am a success story of a twin pregnancy with high NK cells. I also have a hives allergy that is unexplained.
I did IVIG every 3 wks. I never got hives during my entire pg. I carried my g/g twins to 37 wks 5 days and had them only then because of a scheduled c-section. I had a fantastic pg, and was also on prednisone 10 mg x2/day for around 13 wks, and heparin until about 34 wks.
My little miracles are now 2 and are sleeping up stairs.”
“New Mum, IVIG Was the Fertility Answer For Me!!
I found out I was hypo by trying to get pregnant. From Dec 1997 March of 1998 I was BBT charting. In March I had gained 20 pounds and had not had a period, so I figured I had to be pregnant! I was lucky I had a good doctor that knew immediately that I was hypothyroid by my sporadic charts. Hashimoto’s to be exact. I then went through a year of trying to get pregnant and fertility treatments.
I finally had my thyroid under control, and the first successful out of two IUI’s. Alas, we were pregnant in May of 1999! Sadly, I miscarried at 8 weeks. In October 1999 I had a pregnancy loss panel of bloodwork done. The day before I got the blood results, I had my first EVER positive home pregnancy test, to our dismay. From the bloodwork results, much to our horror, we learned that this pregnancy was already at risk. I tested high for Reproductive Immunophenotype and antiphospholipid antibodies and antithyroid antibodies. Basically, I had an immune disorder that would treat the pregnancy as a foreign body and kill it off.
The next day I had the first of two Intravenous Immunoglobulin treatments, known as IVIg. I was hooked to an IV and “pumped up” as I like to call it with treated antibodies, I believe from white blood cells. It saved my pregnancy, and I now have a healthy beautiful 9 month old girl. My sister got pregnant shortly after I did, after nine years of miscarrying, had the IVIg treatments as well. My daughter has a cousin three months younger than her!
Unfortunately, IVIg is an out of pocket expense, and is quite costly. My daughter was well worth it. I truly believe I have my doctor and IVIg to thank for my beautiful daughter. “
“Well she is finally hear and safely in my arms. It is still a little surreal but so joyous. [baby] was born on Monday 2/02 at 9:26 am via c-section at 38 weeks.
She was 6 pounds, 7 ounces and 19 inches long.
My history – one DS born four years ago at 38 years of age without complication followed by three miscarriages in 18 months, each earlier in the first trimester. After the third one someone gave me Dr. Beer’s book and I had an ah-ha moment. After 6 more months of additional research and soul-searching I began immune treatments. I was diagnosed CAT 1, 2, and 5 with non-existent blocking antibodies (1.2%), high NK’s (over 30) MTHFR and positive for PAI-1 and a DQ Alpha match with DH. We did two rounds of LIT with some success (blocking antibiodies to 33%) and the tried for six months to conceive, finally having success at month 6. I did IVIG pre-conception and then every three weeks until week 19 of my pregnancy to address Nk’s that never went below 20. In addition I took Lovenox 2x daily, steroids and progesterone through the first trimester. At Week 16 I added Wobenzyme N and wonder if that is what is responsible for my NK’s dropping to 8
at week 19. We had to do one additional emergency LIT at 8 weeks when a heartbeat was established and my NK’s came back at 37. This time I did a booster to maternal antibodies in additional to paternal and it seemed to do the trick. I was on bed rest for the last three weeks of the pregnancy due to fully centralized placenta previa but otherwise had a relatively issue free pregnancy (said in hind-sight now that I am not stressed every day as to whether I would make it or not.)
I hope this gives some of you who are struggling some hope. I truly do not think I would be where I am right now without the immune treatment. We were told I was too old, my eggs were too old, it was too late – all the things I am so sure many of you have heard as well. So I say to you – if you feel in your heart that this is what you want that do not give up – because the destination on this one is definitely worth the journey.”
“Hello, I delivered a healthy baby boy named Josef 1/15/09. I would like all of you wonderful women to know that there IS hope and please don’t give up. I am a 37 yr. old woman with high FSH, 4 early miscarriages, 4 failed IVF’s, who was told I needed a surrogate and donor eggs. PLEASE don’t believe that from any of these fertility doctors. My husband and I struggled for 5 long years and I never thought I’d be on this board writing a “success story”. I used to say, “Oh, well, my case is severe and that won’t happen to me.” Well, here I am with my newborn son. Who would’ve thought? I thank God who gave me the perseverance and helped me find Dr. Beer, Dr. Stricker, and Dr. Quiroga. I truly believe that LIT and IVIG made all the difference in helping me sustain my pregnancy.
Good luck to you all and don’t give up. I didn’t.
Me, Age 37 DH 39
+1 copy MTHFR
High FSH, highest 16
Poor responder (usually retrieve at the most 5 eggs)
4 early miscarriages
4 failed IVF’s (3 fresh cycles, 1 frozen cycle) (Did PGD and EMET)
Finally, gave birth to a beautiful baby boy 1/25/09!!!!!!! Conceived Naturally!
So, I am writing down my protocol for all of you that are interested….
We did IVIG end of February in preparation for IVF with SIRM OC (which failed)
I was on…
Did Acupuncture for about 3 months prior to IVF
Was depressed about the failed IVF, so decided to try naturally since meds were
circulating in my system.
I used “Answer” Ovulation Predictor to find out the days I was ovulating.
+pregnancy test in April (natural)
Called Dr. Beer’s office and was told to…
Go to Nogales for immediate double-dose of LIT
Lovenox 40 mg 2xday (stop at 28 weeks)
Progesterone suppositories (2xday, stop at 16 weeks)
Dexamethasone (stopped at 10 weeks)
I stopped fish oil.
Carried to term and delivered Josef at 39 weeks via c/section. Wonderful 8 lb.
“My struggles started 4 years ago when I decided to try for another child (secondary infertility). I had 4 miscarriages, after the 4th loss, the Dr. agreed to do some panels which revealed many problems such as MTHFR compound hetero, low protein S, and the list goes on. After my diagnosis, I read a book by Jonathan Sher who described some reasons women had early losses, when I read the part about clotting issues, I told my husband that I think that I found the answer. Dr. Jonathan Sher referred to Dr. Beer’s protocol and that is when I started my research on my problems.
I went to numerous Doctors who told me that I needed donor eggs, that I was too old, but I did not give up, I couldn’t. I needed a Doctor who was above average, since I was not the norm, I had problems that did not fit the average person, therefore I needed a Doctor who was not average. I found my Dr. (Dr. Brody-San Diego) He followed Dr. Beer protocol. Dr. Brody was amazing because he listened to me and worked with me as a team. I had surgery in May 2008 to see if there was scar tissue interfering with the pregnancy, but they didn’t find much of anything. We got pregnant in July 2008 right after Dr. Brody saw a cyst and told me that the change of getting pregnant on that cycle were low because of it. I did not do fertility drugs that cycle because of the cyst. I did not stress this time, I would only chant the same sentence over and over in my head, “there is nothing that I can do…I am doing all that I can…” I did get pregnant with the cyst. I spent the next 9 months doing shots of Lovenox-40 twice a day, taking folgard twice a day 2.2, synthroid-25mg, progesterone for 35 weeks-started at 400 and decreased to 200 around 30 weeks, baby aspirin, and for the last 2 months, shots of insulin (gestational diabetes). My stomach and thighs were bruised. People would comment on how difficult it is to have bruises, I always responded by saying: “the pain of losing 4 children does not compare to the sting of a needle. I had to do what I had to do.”
I am happy to say that I delivered a baby girl 5Lbs 12 Oz via section at 36 weeks. She had to stay at NICU for about 6 days initially for breathing and later for jaundice (it was really hard to go home without her). She is home with us now. I still can’t believe it.
I wish for all of you wonderful little perfect babies from the bottom of my heart. The key is to find the right Doctor that can work with you as a team. Average Doctors treat average problems. I didn’t feel that I was average in any way.
LOVE and PEACE to all of you.”
“Daddy and Mommy would like to announce the birth of our little and healthy BABY BOY, KILIAN who was born December 29, 2008, after 10 years of infertility/ treatment and the “unexplained” diagnosis from uncountable doctors in Germany, Canada and US.
Thanks to my continued research and search for answers (during the time where everything seemed to be hopeless) I was able to find Dr. Beer’s book, completed all immune testing and continued with treatment that Dr. Trobough and Dr. Zouves recommended.
After previous 5 failed IVF attempts and only after the first round of immune and IVF treatment with Dr. Zouves, we were finally able to see our very first positive pregnancy sign in more than 10 years of our marriage ))))
That was a feeling of unbelief and incredible happiness.
Kilian was born 7.5 weeks early; his weight was a little on the low side, but everything else was just fine. In fact, he is such an active little boy that he screamed right away and opened his eyes wide when he just was born. Now at 14 weeks he smiles, coos, “speaks” with us, turns his head, and just likes to be around people; he sleeps very little during the day, just “catnaps” but sleeps good during the night.
I was also on a quite strict gluten-free diet (as per Dr. Woo) even though never tested.
I wish everyone of you only the best and the baby that you are so waiting for. I would have never imagined that this will be true for me. I wanted so much to see my baby and see how she would look like… I almost gave up in the last few years … but something in me kept me going (for long, yes,) but now it seems as if this little wonder has been always with us. This feeling is so wonderful, so close to be a little family.
Thank you so much Dr. Zouves and Dr. Troubough!!!”
“My NK stayed elevated for the majority of my pregnancy‚ At at their highest my 50:1 was 31.6. My average was somewhere around 25-26 until about week 20 of my pregnancy when they dropped to 9% and then stayed around 13-17% for the remainder of my pregnancy. I did Ivig every three weeks from preconception until week 24 and then I did not have to do another round until the end. I delivered a healthy baby girl at 38 weeks. Chris at the Beer Clinic told me that even if your numbers don’t come down the continued coverage provided by the Ivig help to protect the baby in spite of the high numbers. I did start taking Wobenzyme at week 17 but I have read mixed reviews on it as far as it’s impact on NK activity. For me it seemed to work.”
I had 5 mc’s over the course of 10 years including a late 26 week loss and was told by the Alan Beer Center that I had PAI – 1 Homozygozity, MTHFR Mutation, Positive LAD, Extrememly High NK count, Positive APA and low thyroid. I was also told by another doctor that I had several “hidden infections” that would not allow me to carry to term unless I treated them with heavy antibiotics for at least one year. I also had a uterine septum that had to be surgically removed. Things felt so hopeless. I was devastated by the news of the problems with my body but also somehow happy that perhaps this thing can be treated. The ABC had such hope for me.
ABC told me I needed LIT (which I did 2x in a previous failed pregnancy)Lovenox 2x daily, IViG every few weeks, steroids, aspirin, Synthroid — I did all that in a previous failed pg.
I got pregnant again and decided to only do the Lovenox 1x a day plus baby aspirin and the synthroid. I am now holding my newborn baby boy (Max Alexander). He was born on May 1st at 10:05 am. He is very healthy and was 10lbs at birth. A very big boy indeed.
I am telling you this because I had no hope after my last failed pg on the full arsenal of treatment but somehow found it in me to try again this time trusting my instincts regarding the meds that my body needed. All I ever thought about were my losses. I am hoping that my story will inspire one of you to persevere even when you feel that you have reached your darkest point. Trust your body and trust yourself. You are all in my thoughts every day and I wish the most happiness for everyone here going through losses.”
“I am delighted to announce the birth of baby Carla on 11/07. She was born 4 weeks early, weighting 2.750grms and measuring 51 cm, but was perfectly healthy and we were able to take her home the day after.
After a very difficult journey with 3 previous miscarriages and with the help of LIT given by Dr Armstrong in London and accupuncture, herbs and supplements prescribed by Dr Tiberi from the Fertile Soul, our dream of becoming parents finally came true with the arrival of our precious little girl.
I know exactly what lots of women are going through and would like to send a few words of hope and courage to all of those trying to overcome their immune problems. It can be frustrating but there’s hope and lots of children are being born with the right treatment. Don’t give up.
history & treatment….
Well, I managed 3 miscarriages all under 6 weeks in the space of 10 months, some of them where so early they were more of a chemical pregnancy than anything else. I was 33 years old when this all started and 35 now. After lots of testing by my local gynecologist and everything normal, he referred to Dr Arsmtrong in Portland street who tested us for APCA (LADS) and I turned out to be negative so he recommended a LIT infusion. We only needed one, part intravenous part intracutaneous and a couple of months later I became pregnant again and this time it worked .
I also had a few consultations with Dr Tiberi from Fertile soul who recommended acupuncture, herbs a gluten free diet and the following supplements:
o Essentials 2 each kind, twice daily
o BiOmega-3 1-2 capsules, twice daily o Active Calcium 2 tablets, twice daily
o Proflavanol-90 2 capsules, twice daily
o CoQuinone-30 2 capsules, twice daily
o Royal Jelly 100-500mg local health food store
o OPC http://www.saratogasupplements.com
o Wobenzym- helps to improve blood flow
o PABA 500 mg
o Folic Acid 800 mcg
Once I became pregnant, both Dr Armstrong and Dr Tiberi recommended that I had low dose aspirin every day for the whole pregnancy. Dr Tiberi also recommended that I continued having the wobenzym and the fish oil.
And this is it, as soon as the swine flu epidemic is over I’m going to have to start the whole thing again and try to make a little sister or brother for little Carla… well, at least next time I will know what the problem is so it should be a bit easier.”
“hey all, After 3 years TCC and early m/c I went to the ARGC for treatment. I had a thyroid issue that they found out about via GP tests after the first m/c, and I had the ARGC recommended by many people on this site.
I was lucky and with all the medication they throw at you, I fell pregnant with twins 1st time without any IVIG or investigations into immunologies. But at 8 weeks we lost 1 twin and so I did the NK test to chicago, and the results were really bad, cant recall the exact isssues and figures, but it was a mare. We had 2 lots of IVIG after that, and carried on with the steroids, clexane, asprin etc etc, with tests every 4 weeks to monitor things and at 5 months the levels were stable enough to not need additional drugs anymore.
So my advice would be go to a clinic and doctor with a great track record in these issues and, if you need to, pay the extra for the drugs and treatments – I can remember getting a credit card coz we had just run of cash, the tests and extra drugs along with the IVIG had doubled the budget, but hey my little man is nearly a year old now and the light of my life.
So many success stories, just keep the faith ladies
Love to all, I know how it feels, C xxx”
“I can’t believe I am actually writing this – 4 years almost to the day of my first of 6 m/c we welcomed our “Beer Baby” daughter Julia into the world: October 30, 2009, 11:45 PM. This has been an incredible journey for us and involved 4 different OB’s, 3 RE’s, Dr Q in Nogales, a Rheumatologist, Gastroenterologist, Physical Therapist, Acupuncturist, 3 nutritionists, 2 Chiropractors, 1 grief counselor and the staff at the Beer Center and Medical Associates Infusion Centers, most notably Dr Stricker, Dr Trobough, Chris, Meena, Cindy and Carolyn. And don’t forget the hundreds of vials of blood drawn sent to the Chicago, San Jose and my local labs (not to mention the 10-13 vials drawn by DH during each of our 3 Nogales trips for LIT plus a ton of other draws for LAD checks, infectious disease checks and every imaginable genetic screening). But we finally reached our goal and Julia has joined our family: me, DH and our 3 year old yellow lab. This would not have ever happened if not for the amazing company I work for and an extremely supportive boss who allowed me to change careers such that I could work part time, mostly from home, giving me the opportunity to search for answers via web research, and meeting with all the doctors and whatnot mentioned above for diagnosis and treatments. It’s interesting because it was not until we started to seriously accept adoption, donor eggs, surrogacy or fostering as ways to achieve our goal that we finally were met with success – via natural conception.
Here is a summary of my history followed by the treatments I did for this pregnancy:
Pre-Beer Center: 5 m/c over 2 years (Fall 2005-2007) – all natural cycles, ranging from 5w to 12w (baby died at 9w), with all m/c growth on u/s never matched conception date and I charted cycles. Treatments tried: baby aspirin, progesterone, clomid (with 2 pg). Always got pg within 1-2 months of trying.
Beer Center diagnosis (Fall 2007): high NK killing power, low LAD’s, positiive ANA, MTHFR C hetero, PAI-1 4G homo
Beer Center treatment plan: 2 double dose LIT in 11/07, preconception and BFP IVIG, dexamethasone, baby aspirin, Folgard, prenatal
Through online research, discovered I could be gluten intolerant or celiac – went on 2 week gluten free trial (not recommended – do the blood test while you are still eating gluten) and lifelong health issues vanished (constant nervous tummy, brain fog, seasonal allergies, catching every cold I came into contact with that led to a sinus infection). Went back on gluten to try to get official celiac diagnosis but results were inconclusive but remained gluten free from end of 2007 onward. I am convinced I am celiac and that my NK issues stem from a lifetime of untreated celiac. ANA went negative and stayed that way 4 months after going off gluten so I removed dexamethasone from my treatment plan. Also tried Wobenzym but it never affected my NK’s.
Could not get pg from Jan 2008 – May (all while taking dex), stopped dex in May, LAD’s went low in May so we did one more LIT booster in Nogales in June 2008. Got pg with #6 the following month (wasn’t trying). First pg ever where u/s were measuring exactly as they should! Did IVIG at BFP and another 3 weeks later. Started Arixtra and calcium/vitamin D supplements at 7w due to positive APA’s. Had weekly u/s but lost heartbeat at 10w u/s. Beer lab showed some NK activity at implantation site but it was not cause of m/c (in fact, the IVIG may have stopped an attack – otherwise we may have lost the pg much earlier). Karyotype showed cause was trisomy 21 (down syndrome). Was absolutely devastated and convinced it had taken too long for me to find my issues and that now that I was 40 my eggs were all bad. The only positives were that it looked like the immune treatments were preventing attack, and my LAD’s remained high after the loss so no need for another LIT.
Tried one IVF cycle over the holidays 2008 simply so we could have the embryos checked. Did additional prep such that any extra embryos could be frozen and given to a surrogate but we only ended up with 3 embryos and only 1 was chromosomally normal – and the cycle failed. Cycle included preconception and post transfer IVIG, Arixtra, baby aspirin, metformin, folgard, prenatal, 2 courses of antibiotics, progesterone oil plus all the stim drugs.
Was preparing for next IVF cycle when we got pg naturally – lucky #7 – again not trying. Treatment included 6 IVIG’s between 8w and 31w, Arixtra due to positive APA’s (they only go positive when I’m pg), metformin for 1st trimester (I was still on it due to my IVF doc’s treatment in preparation for the next cycle), baby aspirin, folgard, prenatal, calcium/D supplements. DH and I did our best to remain unattached with the attitude that each weekly doc appointment was a checkpoint and that only if we could get to the “good amnio results” checkpoint at 19w would we consider ourselves truly pregnant. Hardly told anyone about pg – not even our families until we got the news at 19w that her chromosomes were good. Started weekly non stress tests at 28 weeks, went to 2x week after my NK’s flared at 30w. Damaged SI joint at 36 weeks and could not walk (did not know this was the case- just thought it was part of pg – so I continued to damage it until I delivered at 40w2d and was diagnosed in the hospital). Delivered Julia via c-section after she was not tolerating contractions (rapid heart decelerations when I was only 3-4 cm dilated). We are having a wonderful time getting to know her although it is a bit challenging that I can’t walk – I am using a walker and doing exercises and following treatment from the hospital physical therapists and am starting to see some healing happen.
That’s it. I know that was long but at least for me, reading peoples success stories really helped me mentally to believe these treatments are for real, and that if we put our minds to it, we can have the families we’ve dreamed of. My advice based on what I’ve learned is do not assume doctors know everything – if I had stuck with my first set of doctors I would still be getting the “keep trying” advice. You need to be your own advocate and study up as much as you can and challenge your doctors diagnosis and treatments. Also, accept other possibilities to how to achieve your goal – as difficult as it may be when we’re driven to believe that only a biological child will do. We opened our minds up to so many new things: traveling to a Mexico border town with $600 cash in our pockets, doing an IVF cycle, accepting donor eggs, adoption and surrogacy as next steps if we could not complete that 2nd IVF cycle that we never needed, etc.
I send my best to all of you and so hope you’ll get the answers you need and complete your journeys as soon as possible. This one took us 4 years – 2 years since finding the Beer Center.
“we are doing great and loving every dirty diaper filled minute.
So here is my long story I hope it gives some inspiration and possible insight. I am truly blessed to be on the other side of this struggle and intend to stick around as much as I can to advice and inspire future mamas.
My story the long version. Gene mutations and high NK cell and Cytokine activity 39 years old and High FSH and I mean high FSH
Ok here it is my story. We had a total of 6 early losses. One was at 8 weeks in 2004 before we conceived and successfully had our now 4.5 year old. He was born May of 2005 After he was born we planned on trying again when he reached a year old but to our surprise we were pregnant when he was 6 months old (Feb 2006). I was still breast feeding and we were not even trying yet. Well that pregnancy ended with a natural miscarriage at 5 weeks. Then June 2006 we had a loss and then another one in Aug 2006. Both pregnancies were lost at around 6 weeks. The following January 2007 we experienced our 5th loss at 6 weeks. All of these were natural no D&C required so no testing of the miscarriage. At this point we were referred to a fertility doc who did do a hysteroscopy and found some fibroid like tissue to remove so we thought maybe that caused our losses. Naively we continue with stims to do IUIs. After 3 failed cycles I saw my chart and saw a day 3 FSH of 21. I freaked and got myself to a different IVF doc who I thought would be more aggressive with my stimulation and go right to IVF. Despite getting pregnant on our own so easily in the past now it was not even working with IUIs. Well during my consult with the new doc I learned my highest FSH was actually 32. He did not give me much hope of getting pregnant let alone going to term. He talked about donor eggs. While getting our tests and protocol ironed out with this doc we beat his odds and were pregnant on our own,. Lost this one at 8 weeks after Ultrasound showed a heartbeat but also showed development was a week behind and there was a bleed seen on ultrasound even though I did no spot and this Doc said a bleed was no big deal. I should also mention all my pregnancies which resulted in losses started with low and slow HCG levels just like Dr Beers says is a problem/symptom of immunology patients.
This pregnancy required a D&C and so we were able to have tests performed. Results showed a normal male. So the problem was not my egg but me in general. Oh and placenta showed blood clotting. I finally read Dr Beers book in record time. I could not put it down. It was known in our house as My Book of Hope. I started to go see Dr Kwak. Of course the last IVF doc thought I was crazy that she was wrong and all I needed was an IVF pregnancy. He was an ass and now I hear he is starting to talk to his patients about NK Cells. I guess he realized the money that could be made if he expanded.
Ok so Leaving that jerk behind I went to Dr. Kwak and found my NK cell were very high and I had 3 gene mutations for clotting.
PAI-1 4G/5G Hetero Mutation
HPA-1a/1b Hetero Mutation
MTHRC677T Hetero mutation
Also had Anti-Phospholipid antibodies
Meantime I also went to Dr Toth in NYC and was treated for infection with him. This was completed in Feb of 2007. I continued to do oral antibiotics from CD 1 to 10 when ttc per Dr Toth’s recommendations. Dr Kwak was aware of my treatment with Dr Toth and although she disagrees with him she did not stop me as it would not affect what she had me do. My treatment with Dr Kwak was as follows.
Lovenox starting CD 6, Prednisone 20 mg while TTC, prenatal vitamins, Vitamin E, calcium with vitamin D and baby aspirin. I also had her test my DHEA level and she agreed I could use a boost so I did added DHEA supplements to the mix. At this point we tried another attempt at IVF with Dr Davis in NY at Cornell he is supposed to be good with High FSH but I did not respond and was switched to IUI and nothing resulted.
In addition to the meds I was on I continued to see Dr Kwak every month for ultrasound to check follicle development and blood flow. One month I came in just prior to ovulation and my lining looked great but then 2 days later I was back to check and I had ovulated but my lining was diminishing so Dr Kwak realized my estrogen was dropping post ovulation. She had me start estrogen patches after ovulation. Three months later we were pregnant and this time with really great HCG levels. (High and doubling) Found out I was pregnant April 2009 and am due Dec 2009
Dr Kwak tested my NK cells and got me in that week for IVIG. I did not do Ivig while TTC but when we got pregnant. Needed dose every 2 or 3 weeks all the way to 30 weeks or so. I also did a 10 day IV antibiotic per Dr Toths recommendation for what he believes is that I have a lingering infection.
And now we have our baby girl born Dec 22nd after 13 hours of labor she is perfect.
All in all it is hard to pin point what was the answer or combo of answers but at this point I do not care. The means justifies the end even if some may parts may have been overkill.
Well I hope this gives you insight and inspiration. I know this is long but I am one who believes even the smallest detail could help someone else.
Good luck to you I will keep you in my prayers.
“I am happy to announce the birth of our son on December 14th just a day before his due date. He weighed 9 lbs, 3 oz and was 21″ long. We celebrated a wonderful Christmas together.
I’ve had a hard time abridging my story for anyone who cares about my 3.5-year journey, but I’ve done my best. I listed (a) the treatments I did, (b) the treatments I decided against and why, and then finally (c) a lengthy timeline of how it all played out. If you read the entire thing, you’ll see that I’ve consulted w/just about everyone: AEB Center, RIA (Matzner), Sher, Toth, March, and Acacio, not to mention local docs in Seattle. I’ve offered my candid opinion on some of these docs, based on my experiences w/them.
Happy New Year to all!
WHAT I TRIED:
1. HSG / hysteroscopy. I am convinced that my 15+ months of light, brownish periods post D&C were not just my body’s “normal” behavior. I had complained to multiple doctors, only one of whom suggested an HSG. I’m so glad that I temporarily joined the Asherman’s group to learn more about uterine blockages. Fortunately, my case was so minor that a simple HSG appears to have dislodged any blockage. I do NOT believe it had anything to do w/a CT infection, as suggested by Dr. Toth in NYC.
2. Intralipids to lower NKs (Dr. Acacio in Laguna Niguel, CA). I think it was crucial to helping me get BFP, esp since I have a strong family history of auto-immune disorders. My NKs were cut half from infusion! Also took dexamethasone through 10.5 weeks (not sure how much that helped). I credit him w/helping us get our BFP when so many others’ efforts had failed.
3. Lovenox. I have normal APAs but am heterozygous for MTHFR, Factor V Leiden, and PAI-1. Even though I only had one miscarriage and was on no blood thinners at all for my first child (totally complication-free), my perinatologist thought the combo of these three things were enough to have me stay on Lovenox + BA until 36 wks, Heparin from week 36 to 39, and then Lovenox again for 6 weeks post-partum. He says I should always take a blood thinner when undergoing surgery, avoid BCP, avoid estrogen therapy once I hit menopause, and not underestimate my increased risk for clotting.
4. Femara to aid ovulation, as my FSH was consistently about 11. Also, progesterone until week 12, Folgard throughout.
WHAT I DID NOT TRY:
1. I did not do LIT, even though DH and I both share one 4.1 DQ-alpha match. I wasn’t convinced of its efficacy, safety, or necessity. (Thinking of all the centuries of inbreeding amongst royalty, I’m not convinced that a DQ-alpha match means anything.) In fighting high NK cells, you can boost your defense (boost LADs via LIT) or weaken the opponent’s offense (lower NKs via Intralipids or Ivig). Imho, if your opponent has a weak offense, then it doesn’t matter that your team has a poor defense (i.e., low LADs). I went with the wipe-out-the-opponent’s-offense approach, which made boosting my body’s defense via LIT unnecessary.
2. I did not take Humira. For me, having only borderline high Th1 cytokines and no diagnosable syndrome (like RA, Crohn’s, or MS), taking Humira felt too risky. The highest cytokine measurement was 36+ at 8 weeks pregnant (May 09). Cytokines had been normal in Aug 2008 (20.0), as was CD3+, and both crept up during an exceptionally dreary 2008-2009 winter/spring. Also, people in the Northwest have high rates RA and MS due to Vitamin D deficiency. That’s a long way of saying that I think my cytokine levels vary seasonally w/my exposure to sunlight and Vitamin D, and I decided not to worry about it.
3. No ongoing infusions or antibiotics. Once I got my BFP (especially once I hit 12 weeks), I didn’t look back. I did my second round of Intralipids at 5 weeks and never did any testing after 8 weeks, either for NKs or cytokines. Even though my cytokines were elevated, there was nothing to do about them except take extra Vitamin D, since I’d ruled out IVig. And I could find no research to suggest that NKs play a role in miscarriage once the placenta takes over supporting the baby at 12 weeks. After 12 weeks, I was told that my only risk of miscarriage would be forming a clot from discontinuing the Lovenox. I know some women re-test NKs and cytokines and get “booster” IVig infusions throughout the pregnancy, but I really couldn’t find anything to support doing immunotherapy beyond the first trimester.”….
“FULL HISTORY & TIMELINE (for those of you who just LOVE to read):
Spring 2006: Quit BCP at age 33. Figured I’d get BFP sometime that summer, as I had conceived DD in just 4 months in 2003 w/no intervention. My previous pregnancy had been complication-free.
Dec 2006: Finally got BFP after 8 cycles of trying, which seemed very long to us.
Late Jan 2007: Went in for first u/s. I was now age 34. No heartbeat detected. U/S revealed 10-wk pregnancy had halted somewhere around week 7. Had D&C.
April 2007: Started TTC again. Consulted w/local RE in July, who assured us that our m/c was just bad luck and to keep trying until Sept or Oct before seeking any treatment. Periods seemed lighter than before. FSH was around 5.
Sept 2007: Day 3 FSH re-tested. Now measured at 10.5. Was put on Femara.
Oct 2007 Feb 2008: TTC monthly on either Clomid or Femara (tried both). Started having really, really light periods (and mostly brown). RE couldn’t explain it. My lining looked thick each month on u/s. So where did it go if I didn’t have a normal period flow? Had 5 IUIs. Each month, I produced 2-3 eggs at ovulation. Every month was BFN. FSH hovered in the 10.5-11.3 range.
Mar 2008 Jun 2008: At age 35, moved on to IVF. Egg retrieval on 05/30. On Day 3 we transferred the two 8-cell ones and let three 6-cell and three 4-cell ones continue to develop in vitro. By Day 5, the 6-cell ones had developed into 150+-cell blastocysts and were frozen. They are still cryopreserved today.
Jun 2008: Our IVF was BFN. We were devastated.
Early Jul 2008: Had tons of immunology tests run through RIA & consulted w/Matzner. Quit Matzner, as his prices were high & he wanted to run tests via his lab that an in-network lab could have run for far cheaper. I had elevated NK cells, normal cytokines, low LADs, plus MTHFR, Factor V, and PAI-1 heterozygosity. Partial DQ Alpha match w/husband (we both have one 4.1). Consulted RE about my immunological findings. He was dismissive and said that “poor egg quality” was my only problem.
Late Jul 2008: Bad uterine cramping mid-month. Thought I had a UTI but tested negative.
Aug 2008: Had endometrial biopsy to test for CD56+ cells. Horrendous uterine pain this month. Assumed it must be some sort of infection, so I consulted w/Dr. Toth in NYC who claimed it must be PID & performed another endo biopsy. He found CT in both DH and me, even though we’ve been each other’s only sexual partners ever! DH was skeptical of the findings and of the idea of vertical transmission in our family bloodlines.
Sept 2008: Took 5 weeks of oral abx per DT’s Rx (3 weeks of azithromycin, 2 weeks of doxycycline). Decided NOT to do his full treatment. I had to ask myself, “What are the chances that two people who have been each other’s only sexual partners not only inherited CT from their family lines but inherited such an obscure strain that no other lab can detect it and such a virulent strain that it is resistant to a massive dose of oral abx far beyond what the CDC or another doctor would recommend?” Low indeed.
Nov 2008: Consulted w/the Chair of OB/Gyn at University of Washington in Seattle re: STDs (his specialty). He believed DT got false positives in his lab and that my cramping & pain were due to the endo biopsies. He re-tested me for CT, declared me clean, and was skeptical that I had ever had it in the first place.
I also Got NKs and cytokines re-tested. Cytokines had shot up from 20.0 to 31.
Dec 2008: Consulted w/Dr. Trobough. DH & I ruled out LIT as too experimental and “out there.”
I still had really light, brown periods. Researched Asherman’s Syndrome & wondered if I had a minor blockage from my D&C two years prior. Had HSG done on 12/30/08. After the HSG, periods returned to NORMAL!!! By this point, I had already scheduled a laparoscopy & hysteroscopy w/Dr. Charles March in L.A. for late Jan. I wasn’t sure whether to go through with it but decided to anyway, just to be sure.
Got tested for TB to be cleared to take Humira per Beer protocol, but never took it.
Jan 2009: Age 36. Consulted w/various doctors re: Intralipid therapy. Negative experience speaking w/SIRM, as Sher only wanted to treat me if I signed up for IVF.
Had my scheduled lap/hyst w/Dr. March in late Jan, and he found very minimal scarring and endometriosis. No stent was even necessary. My plumbing was declared “great,” and he suspected I had had a very minor blockage that had been dislodged by the earlier HSG.
Feb 2009: Cytokines at 32.7. Decided *NOT* to take Humira to lower cytokines/treat CD56+ cells due to the potential of bad side effects and infection. And I was unconvinced that intrauterine CD56+ cells really meant anything. (None of the other major RIs besides AEB Center even tests for it.)
Mar 2009: Sought treatment w/Dr. Acacio in Laguna Niguel to try IUI + Intralipids to get my NKs under control. He did not think that egg quality or my age was my main issue and thought it was logical to try a few rounds of IUI + Intralipids before moving on to IVF or giving up. He didn’t try to shoehorn me into a one-size-fits-all IVF protocol like Dr. Sher.
Took 0.5 mg Femara daily from CD3-CD7. I also had an HSG in Seattle on CD7 to take advantage of its unexplained therapeutic effect. Started 40 ml Lovenox and 1.0 mg Dexamethasone on CD6 per Trobough’s protocol instead of CD10 (Acacio’s protocol). I think that was a good idea, since I always ovulate early.
I went to Laguna on CD8 and had u/s on CD9. I measured 19mm on one follicle and 16mm on another. Had HCG trigger injection at 1:00 a.m. on CD10, and the larger follicle “launched.” Intralipid infusion was given 34 hours later on CD11, followed by IUI. Started progesterone gel/suppositories two days later: Prometrium then switched to Crinone gel. Folgard 2x daily + 1200mg calcium + prenatal vitamin.
Apr 2008: Intently researched contracts and medical insurance for gestational surrogacy using our frozen embies: had a friend lined up to be our carrier and had chosen a clinic, medical plan, etc. I assumed that the IUI + Intralipid was a longshot, since IUIs only have a 3%-20% success rate per cycle.
13 dp IUI: Tested HCG Beta. BIG SURPRISE! It was 61! I was in total shock. At 15 dp IUI: Beta had gone up to 165! At 17 dp IUI: Beta was 394! At 5 weeks: Flew to Laguna for booster Intralipid infusion. Also had an u/s, which confirmed a uterine pregnancy (not ectopic). Then, at 23 dp IUI: Beta was 3200!
Tapered off dex starting around week 8 and discontinued by week 10.5. My perinatologist upped my Lovenox to 60 ml/day from 40 ml around week 17, which I stayed on through week 36. Continued aspirin + prenatal once/day and Folgard + calcium 2x/day. Switched from Lovenox to Heparin 2x/day and discontinued aspirin from wk 36 to delivery. Prescribed Lovenox for 6 weeks post-partum.”
“Now that I have good news I want to share them to inspire others. I had 5 miscarriages over 3 years, from 5 to 22 weeks. Sixth pregnancy was very hard‚ I was on the bedrest from week 6 to delivery ( i.e. for 6 months) with heavy bleedings and contractions, and the baby came early (at 32 weeks), but nevertheless I consider it a huge success and am extremely happy. I wanted to share what treatments I did in this pregnancy in case it helps anyone ‚ of course it’s hard to say what exactly worked and helped to stretch this one to 32 weeks, I think it’s a combination of meds, my doctor’s dedication, and God’s will.
I tested for immune stuff after 4th miscarriage per my OBGYN advice; he also told me about Beer clinic and supported all immunology treatments. I had thrombophilia, APAs, elevated NK cells, and NKU cells (in the uterus); my LADs were borderline (at 30). In the fifth pregnancy I took Lovenox, Humira, and did IVIG, but my betas were not rising well, and I miscarried. Also my cytokines (which were normal before Humira) spiked up after I started taking it, and were high after pregnancy test as well. After that I grew suspicious of Humira and decided not to take it next time.
At 6th pregnancy I was taking the following meds. Before pregnancy test: C-Estriol (per my doctor’s advice ‚ it’s hormone naturally produced during pregnancy and supposedly may suppress immune system); Dexamethazone (from CD6), Metformin, Viagra suppositories (CD5-7), Lovenox (from CD6), Vitamin D, Fish Oil, Progesterone/ Estrodiol suppositories (after ovulation). I had IVIG right after positive pregnancy test, my cytokines spiked again but went down after IVIG; I repeated IVIG every 3 weeks until week 22 due to elevated NK cells. Also upon positive pregnancy test I had 5 days of antibiotics; after I started bleeding at week 6 my doctor put me on a month of antibiotics. He also stopped blood thinners due to bleeding. From the beginning of the second trimester I started having contractions so I was on special medications for that as well. I was on Lovenox on and off in 2nd and 3rd trimesters‚ my doctor used a lot of judgment since my case was so complicated.
One last note‚ I strongly believe I would not have this baby if it wasn’t for my doctor. He is by far the best I have ever seen – on the edge of new research, experienced, but also very kind and genuinely interested in the outcome. If you live in San Francisco Bay Area I’d greatly recommend him‚ Jan Rydfors in Redwood City.
I also forgot to mention that I went gluten-free for this last pregnancy, maybe it helped as well. In addition, I took Chinese herbs (with the new Tibetan medicine practitioner) but stopped accupuncture because of bleedings per his advice.”
“I just wanted to share with you all the birth of my daughter Sophie born on March 4, 2010 at full term (actually 6 days past due date) weighing in at a healthy 6 lbs 13 oz and 19.5 inches and totally perfect.
What has been a reality in my mind and heart for so long is now a reality and I still can’t believe it at times. Let me share with you my story which I posted before in June when I first got pregnant. I also added more information regarding when I started some of my meds.
I hope this helps some of you and encourages all of you.
I just wanted to share that I have a pos beta #1 and beta #2.
Beta #1 HCG was 160
Beta #2 HCG was 1486
This is double the norm and could indicate that I’m carrying 2 since 2 embryos were put back on June 11. While I’m happy I won’t really feel I’m having a child until at least week 20.
I normally wouldn’t share this early but the real motivation is because I feel that I what I did to prepare for my IVF cycle made a huge difference in my egg quality and for what it’s worth I wanted to share what I did for those of you still preparing ttc.
A little bit of history:
DD turns 6 in August
3 mc- 6 wks, 8 wks and 5 wks
2 implantation failures that I know of but often had clotty delayed periods which could indicate implantation failure. Only implantation failures in last year. My doc thinks I had at least 6 implantation failures.
Been trying for 4 years
3 fresh IVF (this last one is successful so far)
My immune issues:
Very High fibrinogens, PTT and MTHFR A so thrombotic
Borderline NK cells 15% (after being wheat free, dairy free 2 mos at time of testing, probably much higher before then)
High CD 5+ 19+
Low LAD but B cell count is above 52%for IGg and 38% for IgB so LIT not necessary
TNF TH1:TH2 chose not to test b.c RFU raised price to $480 and I knew I wasn’t going to use Humira. Personal choice. Mom has RA.
DH has no major sperm issues.
1st IVF at 38:
11 eggs, 11 fertilized, 5 5 day blasts, all great quality (2 fresh, 3 frozen = chem. Pregnancy)
felt a war in my abdomen which I now know was my immune system attacking the poor things
2nd IVF at 39:
11 follicles but could only retrieve 9, 7 fertilized, and 3 were transferred on day 3 b.c my RE was afraid they wouldn’t make it to day 5. None made it to frozen. No pregnancy.
For this cycle I did acu for 7 mos with TCM herbs.
3rd IVF at 40: with new doc Braverman at SIRM LI
17 eggs, 14 fertilized, 2 were great and transferred at day 5 blast. 2 continued to extended blast and were frozen.
Lining was always at 7.5 to 8.5 but this time I had a 10+ lining. Never had that lining before. I attribute it to the Lovenox and fish oils to smooth it out.
What did I do differently prior to this IVF?
Emotional level: read Julia Indichova’s book and did some fertility counseling, released a lot of stress and discovered a lot about myself
Went organic, all natural for 10 months
Went wheat free, dairy free (at times gluten free) for 6 months (my whole body felt totally different and better after 4 days. It was instantaneous)
Did Tai Chi, some Chi Gong exercises from Angela Wu’s book Fertility Wisdom (recommend)
Continued to drink Korean herbal tea good for blood which has Angelica root in it. Drank it for 7 months daily along with green tea for antioxidants
Did acu on and off for 3 months with herbs but got too expensive
10-12 weeks prior to IVF I started
fish oils- 3400 mg daily
calcium with Vit D
Vit B complex
Curcumin 1500 mg (just in case TNF)
some nettle tea and tonal tea
tons of blueberries but only in spring time as weather got warmer
some of the ST 36 electro acu points
I think all the organic foods, relaxation, and antioxidants and herbs made a difference. My doc was pleasantly surprised at how well my cycle went. He said I did superb for someone at 40. One of his best. I didn’t need a lot of gonadotropins either. I stopped all of this a couple of days before I started cycling.
Lastly my immune treatment protocol which is why I believe I’m pregnant at all:
Prednisone 20 mg daily (8 days before cycle began; took it til week 17)
Lovenox 40 mg daily (CD 6; took it till week 25)
Intralipids (2 days before egg retrieval; took it 4 times 4 weeks apart)
BA (11 days before cycle began; took it till week around 33)
Folgard (once + test)
Crinone 8% prog gel 2 x a day
50 mg Prog/E2V suppository 1 x a day
4 days after transfer I felt some digging and then the sore throat for 4 days and swollen knees which I only got once before. I popped extra prednisone for 3 days and was worried. Sore throat went away and then the next day I had my first beta.
I hope this is encouraging for some of you and may give you some ideas of what to try as you prepare for your next cycle. I felt so alone and weird and on the verge of hopelessness before I read Dr. Beer’s book and found this board. Thank you for all the articles. They were very informative. I felt empowered with information. And thank you for sharing your successes and sad failures as well as this is part of the journey as well.
I wish all of us could only experience successes from here on.”
Fighting For Life