Science AMA Series: I’m Professor Mady Hornig at Columbia University’s Mailman School of Public Health, Ask Me Anything about chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)!

I saw a doctor a few times during my second successful pregnancy for hyperemesis gravadarim (too much barfing while pregnant. He was a compassionate GP: I used a midwife and not an OB for my births. I went back post partum and told him I wanted to figure out what the pregnancy remission was all about, and he was willing to work with me.

 

He started with estrogen, because that can help with MS. I didn't think that was the right path, because I feel better right away, before a pregnancy test comes back positive, and estrogen peaks in the 2nd trimester, but I tried it. No go. So then he tried a standard replacement therapy dose of 200 mg progesterone. It seemed to help but wasn't obvious. He bumped me to 300, and I could tell it helped for sure. It mostly seemed to prevent the post-exercise malaise from getting so bad, rather than fixing what I was already feeling when I started it.

 

That was while I was still nursing. When I weaned, I felt worse. This makes sense because nursing keeps progesterone levels somewhat elevated. So we went to 400 mg and that was better. Then 4 years later I conceived again. I felt SO much better that after that birth I asked if we could PLEASE go up again (by this time with a new doc because the other one retired). 600 mg is better still, but not like being pregnant.

 

Last year I decided to look into it even more, because progesterone doesn't rise dramatically right away, and I felt better right away. So I looked into HCG, which is the hormone pregnancy tests detect. I even found one small study that seemed to link HCG to pain levels ( link to the first page I found ). I jumped through a lot of hoops, saw a reproductive endocrinologist, and ended up injecting my stomach with HCG for a few weeks. The results were not dramatic, but I think it was helping because I relapsed when I stopped. But that doctor was trying to keep my dosage low, and anyway to raise the dosage to the level I wanted to try would have cost me (high deducible plan) 10K/year. Not something I could do.

/r/science Thread