Get sick to get better?

As you might know, Mepron has kicked my ass.  I went from functionally ill to bedridden. 

So I stopped the drug. 

Two days later, and I'm functional again. 

Maybe this is the wrong decision.  I don't know.  Maybe my body will adjust.  Maybe I have to get sick before I get better.  But I'm just not in a place where that's an acceptable response.

There are many in the Lyme community who believe this get sick to get better theory.  They call it a herx, though I've heard people question whether it is the same thing as the initial Herxheimer reaction that occurred with syphilis.  The thing is, though, I've never herxed with any drug.  I've only gotten better.  And then stalled out.

I'm dizzy.  So so dizzy.  And I have to take really deep breaths to feel like I'm getting enough air.  Other than that, I'm better.  I have more energy.  My muscles don't hurt.  My joints don't hurt.  I'm functional, though being dizzy all the time does have some major drawbacks, as I'm sure you can imagine.

The question is do I give up feeling relatively good to go through several weeks of hell to the point that I am literally housebound, in hopes that I feel better in the end?  Are there other alternatives that might not make me as sick?  Is it possible that at this point the meds are causing some of the symptoms? 

I really don't know the answers, but we're going to be bringing this up to the doctor when we go see him next Friday.  For now, I'm resuming my functionally sick life.

A positive attitude won't cure me

When I was in high school, we attended a Unity Church, which believes very strongly in the power of positive thinking.  One day in my class we talked about being able to use positive thinking to stay well.  I told the teacher it was complete crap!  Bacteria and viruses cause illness, not our thoughts.

A few years ago, the Secret was the big new age thing.  Same principle.  Same objections.  I've always had an issue with the belief that medical problems were simply mind over matter.  An infant is not suffering because of his or her negative thoughts.  I didn't get Lyme because I gossiped.  I got Lyme because a tick bit me.

And I'm not going to get better by willing myself healthy.  I promise you if that were the case, I would be living my life as a very healthy mother.  I feel like sometimes when I complain, others want me to banish the negative, sick thoughts, but really, if they were stuck in bed, barely able to eat, barely able to move really, they might have a few complaints too.

It's not that I don't believe in thinking good thoughts.  I do.  I have been to a hypnotherapist and often listen to my CD before bed to help me sleep better and relax.  But I don't think it's so simple as to think good thoughts.  And it actually rather annoys me to hear such absurdity.

The Lyme life

It's 7:19.  I just started my IV for the night.  Who'd have ever thought I would become so proficient at doing infusions?!  But they are as much a part of my life now as brushing my teeth. 

The new meds are making me feel pretty badly.  Because of the snow and Kellen's cold (which is now my cold) we haven't left the house much since Thanksgiving.  It's good because I get to rest.  But, I also think the less I do, the more tired I realize I am.  It's easier to think I'm better when I get out of the house, run a few errands, get some fresh air.  Instead, this week I've spent a lot of time watching TV from my couch. 

My appetite is also shot.  I go from being so so hungry that nothing can make me full to a place where absolutely nothing sounds good.  I ordered Chicken Parm from a local restaurant tonight, and it was SO good.  I shouldn't have eaten it all.  I certainly wasn't hungry.  But I ate it.  And it was good to eat a big meal (I ate relatively little at Thanksgiving).  I still have to eat my nightly fat so that I can take Mepron.  I'm hoping egg nog is enough because I don't think I can manage anything else. 

There are so many things on my mind to write, but I'm just so tired.  It's hard for me to believe that this is me, better.  I don't have shooting electric shock pains anymore.  I am not nearly as tired as I was the year I went undiagnosed.  The neuropathy has diminished and is almost nonexistent most weeks.  The joint pain is mostly gone.  These are things to be celebrated.  But now, with this new drug, I am tired again, no energy for celebration.  And I still don't feel like I can get a good breath.  And I'm dizzy.  It's the symptom that won't relent.  I have hope that this combination of meds tips the scales for improvement. 

Tonight I'll listen to my hypnotherapy CD before I go to bed, hopefully giving me another solid ten hours of sleep.

This is the lyme life and certainly not what I imagined my twenties to look like.

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. 

Chronic Disease choices

I remember hearing a few years ago someone talk about the reality that when we say "yes" to one thing, we say "no" to another. That isn't any truer than when you are sick.

Some of the choices I have to make each day:

- Whether to go to bed early or read to my son at night. I have a portable IV pump, which was supposed to make this a moot point, but after the night when I had a line full (yes full) of air, I decided the best thing was to stay still during my infusion. We put Kellen to bed, and then I start my meds, which means I finish after 10.

- Coffee or extreme fatigue. Kellen gets up between 6 and 7 every morning. Since I don't finish infusing until after 10, I often am awake until close to 11. I'm lucky if I get eight hours of sleep. Dan goes to school, and then I have Kellen. He's taking swimming lessons, so my only real option if I'm going to survive the morning is some form of caffeine. I have stomach problems so this only complicates those. It also means that I likely won't take an afternoon nap, even though I should.

- Pain or well, pain. Speaking of stomach problems, I get to choose between the types of pain I get to experience each day. I have chest wall inflammation (pleurisy in medical speak). I went to the ER several times for chest pain before I learned what was wrong. Advil pretty much reduces the inflammation so that I'm no longer in pain (at least that way). But if I take Advil, I risk stomach pain and causing further damage to my GI tract.

- Sugar or no. Because of the systemic overload of bacteria, a lot of lyme patients have trouble with things like yeast overgrowth, and as a result are encouraged to eat a low carb diet. The problem for me is that not eating sugar has led to hypoglycemia, which causes dizziness. I'm already dizzy enough, TYVM. I am currently on the "fuck-it-diet."

- Pixar or Bravo. I would just like to thank Pixar for creating such brilliant kids movies. They are actually quite enjoyable for adults. As much as it saddens me that Kellen watches so much TV, some days that's how we survive. We have already decided that Kellen will be getting more DVDs for Christmas because I know nearly every word to Cars. I'd love to find Lion King (though I think it's in the "vault"). We're also looking at Ratatoille and Aristocats. I'd love other suggestions. I used to have a great disney collection, but they are no longer in existence! (The movies we do have are Cars, Up, Nemo, Shrek (all 3), Toy Story, A Bug's Life, Tarzan, Happy Feet.)

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On another note, several blogging friends have asked what they can do to help. I've been thinking about that, and I think the greatest thing would be cards. There is something about opening the mail to find a personal card that brings a smile to my face. It reminds us we are thought of. I used to have a large collection of cards, which burned up in the fire. I've been trying to decide if I should post my address or get a P.O. Box. Our address has been so publicized that I don't know if publishing it again would matter much. But I'm also a little nervous about doing so. More details this week. Thank you all for caring. The support I've gotten in the last couple of days has been overwhelming. Thank you.