Preface: This is a piece for my fertility sisters. Be forewarned, if you’re not deep in the hole of IVF or have a general interest in the subject matter, then just skip on by :)
Let me start off by saying, I’m not a doctor. I have no formal education in fertility or immunology. This is based on my own personal experience and my own research done over the past five years while going through fertility treatments.
You should know that I’ve never tested positive for any autoimmune disorders, yet each time we implanted a PGS normal embryo it ended in miscarriage.
Not until I used a formula to suppress my immune system did an embryo make it past 3 months. And even then, my body went into overdrive when I stopped taking it. I developed a condition that no doctor I visited had ever seen develop in a pregnant woman.
This is my story.
We’ve spent years trying everything. We used ovulation kits and herbal vitamins, we saw acupuncturists and urology specialists, we de-stressed our lives and started meditating. We did IUI’s and DNA testing, genetic screening and HSGs. Nothing seemed to help.
After my first miscarriage from a PGS tested normal embryo (IVF, FET) I saw my first immunologist.
She ran a battery of tests. I’ve never filled so many vials with blood. (They brought in cookies and juice with the next rack of vials for me to fill, it was dizzying)
A few weeks later the results were in. Pages and pages of results.
They found nothing.
My RE told me it was a numbers game. “Let’s just do another cycle and see.” He said.
It had been five years. We were no closer to any answers. It felt like all of the doctors we saw were just throwing mud at the wall, trying to see what would stick.
Sitting in the RE’s office at our new fertility clinic, “Would you do anything different, if we did a cycle with you?” I timidly asked.
She had some ideas, different protocols, different med dosages, and she mentioned trying Intralipid Infusions. I had never heard of them before, so I did a little research.
Intralipid Infusions are a supplement which is used for MS patient,cancer patients undergoing chemotherapy and also, women preparing to undergo infertility treatments such as IVF who have diagnosed immune disorders. It’s a highly calorific mixture of natural fats containing egg yolk and soya oil. Hospitals use intralipids to tube feed patients back to health. Because it is still considered new and experimental, it is not yet FDA approved, and so, it is not covered by insurance. It is a mixture of 20% Soybean Oil, 1.2% Egg Yolk Phospholipids, 2.25% Glycerin, and Water.
After much consideration, we decided to give it a shot.
Everything was going exactly like our first two IVF retrievals- same number of follicles, same number of eggs, same number of good looking on-track embryos at the end.
Except, on top of all the usual IVF meds (in addition to upping my Fragmin), I had begun getting Intralipid Infusions every 2 weeks. I was told they normally only recommend this treatment for women with autoimmune disorders, and I had never tested positive for any, but I was happy to be trying something new.
We anxiously awaited the PGS results. And both embryos came back perfectly genetically normal.
After our FET, during the 2ww, as I laid there getting my Intralipid Infusions, we had a moment where we just hoped for a BFN so we could finally put this whole thing to rest and get on with our lives. We knew we couldn’t take any more heartbreak or loss.
But ten weeks later, I was still going in every 2 weeks for the Intralipid Infusions. Not only had our baby implanted, it was growing stronger than ever.
We couldn’t believe it. Every week they brought us in for an ultrasound, and every week we anticipated the news that our baby had stopped growing, but it never came.
At 3 months pregnant I had my last Intralipid infusion.
We graduated from our fertility clinic and were handed over to an OB-GYN.
But the story doesn’t end there.
A week later I began to get hives, first it was just across my underwear line, but then it started to spread. I got hives wherever something was touching my skin, my bra line, my sock line, if I accidentally rubbed my arm up against something. I started to take photographs of my hives. It was fascinating. They were in the exact shape of whatever I touched. I put my finger to my arm and wrote my name. R-I-V-A. The letters immediately rose up in pink welts. And boy, were they itchy.
“That’s dermagraphism,” the doctor pointed to my arm, looking quite interested.
I had never heard of it but went home right away and began my research.
It seemed to be a type of Urticaria.
I swiftly got in to see an immunologist who specialized in Urticaria.
“It’s like your body thinks the baby is a parasite and it’s over-producing histamines trying to get rid of it, and they are coming to the surface of your skin.”
He had seen plenty of dermagraphism cases, but had never heard of this happening to a pregnant woman.
I told him about the timing.
Is it possible, even with no diagnosed autoimmune disorders, that the Intralipid Infusions were stopping my body from attacking the embryo? And now that I’ve stopped taking them, has my body gone info full combat mode trying to fix itself?
I have always been ‘healthy as an ox’. That’s what the doctors used to tell my mother when I was little. Everyone would get the flu, and I wouldn’t get it. I would go out for dinner and everyone would feel sick, and I woke up feeling great! Even when I would get a cold, it rarely lasted more than 12 hours.
Is it possible that I just have an abnormally strong immune system? Is it possible that I don’t have any immune disorders or issues at all, but that my immune system has been fighting off all of our healthy embryos?
He had never heard of that. He didn’t know much about Intralipid Infusions.
I scoured the city for more specialists.
No doctor I saw had ever heard of this happening. They were all at a loss and kept recommending I see another specialist. I started to feel like they just wanted their colleagues to see my case!
Two months later, when I was five months pregnant, the dermagraphism just started to magically go away. No more hives. No more writing on my arm (although It was kind of a neat party trick!). Nothing.
Did my body just get used to the ‘parasite’? Did it lose the ‘fight’?
I am eight months pregnant now, due to deliver next month, and I can’t help but wonder, is there a link between healthy embryos that miscarry and a strong immune system with no autoimmune disorder?
Honestly, I don’t know. There isn’t enough data out there. Maybe it was all just a coincidence. But, if you keep miscarrying PGS tested normal embryos, it might be worth taking a closer look…