The Mepron Diet

As I said before, I have to take Mepron (the new drug) with fat.  The first night I thought a bowl of ice cream would be sufficient, not realizing it was low-fat.  I learned a hard lesson that they mean business when they tell you to take with fat.

I'm now complying.

I take Mepron twice a day, which means a pretty substantial amount of fat.  I am considering going back to a low-carb, high-fat diet to ensure I don't gain weight while taking this drug, though I am pretty sure my endocrine system as a whole is so screwed up it wouldn't matter what I ate!  And I'm enjoying the egg nog that has become a daily ritual!

Currently my Mepron meal includes:
- three chunks of Tillamook Sharp Cheddar Cheese (Tillamook is the best, in case you were wondering)
- half an avocado
- half glass of egg nog

So far, this seems to be sufficient.  It's a good thing I'm taking this med during the holidays!

Lyme and pregnancy

Kellen is now two.  I'm starting to feel the baby itch. 

I always wanted several kids.  I'm starting to accept that two might be enough.  But right now we only have one, which is one less than two.  I know that only children grow up just fine.  But I want Kellen to have a sibling.  I want another baby.  I want to have a big enough family that if something happens to me, they have each other.  I know it's a little morbid, but the fire and being sick have made me confront mortality far sooner than I would have preferred.

I always thought four years was a good amount of space between kids.  Of course my mom then tells me that she feels she missed out on a lot of her brother's life because she was in college while he was in high school.  I had my second miscarriage last January, which was probably good in that I needed to be undergoing Lyme treatment.  But I had started to see the benefit of having two kids two years apart.  We're now back to the four year spacing as a likely outcome. 

But, the question really isn't about how far to space our kids anymore.  The real question I face everyday is whether having another baby is really a good idea.  It is well known in the Lyme community that there is something about pregnancy that makes us more susceptible to Lyme.  For some it makes them better, for others, worse.  It also can be passed to the baby.  We know that I've either had Lyme since I was bitten in VA when I was ten OR was bitten in Oregon unknowingly the summer I was pregnant.  So it's possible Kellen has Lyme as well, and he will be tested when we go to Washington in December.  If his test is negative, we will still closely monitor him as congenital cases of Lyme appear to be seronegative (negative blood tests) more frequently.  If I were to get pregnant, I would be on a low dose of antibiotics the whole pregnancy, which reduces the rate of transmission to almost zero.  (I am trying to cite as much of this as I can, but honestly there has been such little research done, I'm having a hard time finding trusted sources.)

My biggest fear isn't about passing Lyme onto a baby.  I know we can control for that.  My biggest fear is for my own health.  I got sick six weeks (SIX WEEKS) postpartum.  Quite frankly, pregnancy scares the shit out of me.  Obviously it wouldn't be a year-long journey to get a diagnosis, but this has been hell.  I haven't been able to enjoy the last two years of my son's life the way I would want to because I have been so sick and so dizzy.  I don't want to spend the first two years of my next child's life sick, fighting this same battle.  My doctor told me this week that it is unlikely I will ever be cured and that a relapse is not only likely, it is almost certain.  If pregnancy makes that more likely, then is that wise?  Or if I'm going to relapse anyway, does it matter?

These are the questions that have been swirling in my head for the last few weeks.  It's one of the reasons I created the new blog.  I wanted a place to be able to talk about how we are looking to complete our family, whether it's through another pregnancy, adoption, or surrogacy. 

Babesia and Mepron

Lyme is so complicated. 

Some symptoms have gotten much much better.  Others have gone away only to return in a frustrating fashion.  The dizziness, though, has not changed at all, except for a couple of weeks (over the course of two years) where it disappeared and gave me a glimmer of a normal, healthy, lyme-free life. 

I also started getting breathless in June.  I had been working out with a trainer, trying to regain two years of inactivity.  But I stopped because I was struggling to breathe.  We've tried everything to figure out the cause of this "air hunger" from reflux meds to asthma treatment.  Nothing has worked.

Air hunger is a known symptom of a lyme co-infection, Babesia.  Even though I had some symptoms of Babesia, we really didn't think that was a problem for me given that I didn't have fevers.  But I don't run fevers.  Ever.  My appendix ruptured in 2002, and I was VERY VERY sick, and yet the highest my temperature got was barely over 100, and by the time we went to the ER, it was 99 degrees. 

During my last phone appointment, my doctor decided to test for Babesia.  My test was barely positive, though I imagine it's a little like being pregnant where you either have it or you don't.  So we're going ahead with treatment.

I picked up my Mepron, also an anti-malarial, the night before Thanksgiving and swallowed the first of many thick, yellow, liquid doses.  There's a segment of moms who refer to their breastmilk as liquid gold (which quite frankly nauseates me).  I've decided that Mepron actually is liquid gold.  I should film a video of how thick this stuff is. 

My mom asked why I took it the night before Thanksgiving.  Well, my COBRA ends early in the year, and this drug is $1100 for three weeks.  I'm on a time crunch, and even Thanksgiving is not so important as to impede medical progress. 

Mepron has made me the absolute sickest of all of the drugs.  Within a few minutes of taking the drug, I feel nauseated.  If you don't take it with 30-40 g of fat, it can cause all kinds of digestion issues, which I learned the hard way Wednesday night.  I get a headache within an hour.  It causes sweats and body pains.  But it's worth it.  There is a theory in Lyme treatment that you have to get worse to get better.  I believe in this drug.  I think it might be the missing piece to reclaiming my health... and my life.  And I'll take the side effects to get there.