Update

I just emailed a friend an update, which I've mostly copied here.

Hey-
I keep meaning to update the Lyme blog, but seriously I cannot even tell you how horrible this last month has been.

Two weeks ago I had the stomach flu (to the point where all I could keep down were ice chips). I had just gotten better when I got the call that my grandmother had this major stoke, and at this point, we might be pulling the feeding tube and calling hospice. It's horrible. And my aunt just got here from Portland. She's supposed to be recovering from brain surgery (her second this year). My uncle was taking care of her and got H1N1 followed by pneumonia. Anyhow... it's just been awful.

I had a doctor appointment over the phone on Friday with my Lyme dr. My last test came back definitive for Lyme, so I guess that's good. I started my Lyme antibiotics on Friday. They treat the intracellular form of the bacteria (it comes in three forms and it is really good at hiding from antibiotics and the immune system). Anyhow, I started getting insanely dizzy last night at Costco and nauseated. It was all I could do just to get into bed when we got home. And I haven't moved much since. I called the dr. and he said that 1-2% of people have this reaction to the antibiotic, and we need to switch drugs. Usually they would switch to Doxycycline, but it causes worse GI issues, so I need to switch drug classes. There are only so many drugs I can cycle through. If I can't handle them with my stomach, we will probably have to switch to IV. At this point it's a matter of getting the right combo of drugs. Once we have them, the theory is to stay on them until all symptoms are gone (or 90% better) for 2-3 months. It doesn't guarantee that the bacteria are gone, but it's a good shot.

The thyroid meds and the yeast meds have already made such a difference!

Getting sick while you're sick

I've been fighting a cold for a while. It's been a mild irritation, but nothing that's a big deal. I've been a little stressed about H1N1, but we stay pretty isolated, so I figure we're ok.

I had breakfast and my decaf coffee (I can't have caffeine during treatment, and I probably shouldn't have decaf). I poured the small amount remaining in my cup and came upstairs. That's when the rumble in my tummy began. Let's just say that deciding which end takes priority is not a fun way to spend the day.

I would like to take some Pepto or better yet some anti-nausea medicine (which I'm pretty sure I don't have since the fire). But I really don't want to add to my medicine cocktail as I don't know what is "safe" and what's not.

The other problem is that I knew it was pointless to take any meds today... when Gatorade won't stay down, I don't think pills will either.

I'm hoping this passes quickly. And this is a good reminder of what sick *can* feel like. I am fatigued. My hands and feet do weird numb things. I forget which version of there/their/they're I need to use. But really, those are just annoyances. It's not so bad that I can't sleep because of the stomach cramps. That's sick!

Symptoms or side effect?

I've been taken off of my antibiotic for the time being. I've been really hoping this wouldn't happen, and I'm still optimistic that when the dr. calls back, I can restart. There are other antibiotics, but the one I am taking is known to be the most effective at killing Bartonella.

Yesterday I started having severe pain in my knees. I have had joint pain that comes and goes with my symptom flare ups, so this isn't necessarily alarming. However, the antibiotics that I am on can cause tendon rupture, so anytime there is pain in one of the joints, we have to be particularly careful as a tendon rupture is the last thing I need!!

And therein lies a huge problem with treating Lyme. It's very hard to differentiate between symptoms, side effects, and die off. In fact, sometimes the pain can mean that your body is getting rid of the bacteria, and then stopping the antibiotics wouldn't be a good thing. And if you stop the antibiotics, the pain goes away, so it's possible to attribute it to the antibiotics when it wasn't that at all. I also don't know how I'm going to feel from day to day, whether my biggest issue will be cognitive (repeatedly saying yellow when I look at an orange item- yes, this has happened), muscular or joint (and in which joint it will be), neurosensory (tingling in my hands and feet), and/or other neurological issues (light sensitivity, cranial nerve issues). So just because my knee hurts today doesn't mean it will hurt tomorrow.

Tough stuff, this is.

**UPDATE 4:00**
The dr. just called, and they are switching my antibiotics. The tendon problem is really a concern, so they don't want to take a chance.

My burning finger

I have peripheral neuropathy, which is just a fancy way of saying my hands and feet go numb. Sometimes they burn too, as though I was resting them on a hot stove and just decided not to take them off.

My left pointer finger has been burning like this for three days now. It's not really a problem per se, although it is really annoying and another reminder that my body is mad at me (well, I guess that's not really true since it's being attacked).

The thing is that I can't do anything about it. It's not like I actually burned my finger and can do something to help ease the pain. And in reality, it isn't even my finger that has a problem... it's my brain. There's no neosporin for that, unfortunately.

I *should* have a good week. I'm nearing the end of my flare up and preparing for the big fall around the 1st (it's when my exhaustion really peaks- think Kellen's birthday party). But I'm not sure yet how the antibiotics will play into all of this. I'm still hoping for my few good days.

Decisions

Since the fire making decisions has been nearly impossible (for both Dan and myself). Where do you want the lights? I don't care. The outlets? Don't care. Just put them somewhere. Too many decisions! With Lyme I have even more, and the more information I get, the more confused I am, and the further I am from the answers.

CDC and IDSA or ILADS? An LLMD (Lyme-Literate Doctor) or my neurologist? Oral antibiotics or IV? Long-term antibiotics or 28 days? Doxycycline or Rocephin? Supplements or no? Change my diet to a low-carb diet with fiber pills or a high fiber diet? Ambien or no Ambien?

We saw the neurologist, and she disagrees with the Seattle doctor (though understanding the battle in the background of Lyme, I was expecting this). She is confident we can treat the CNS (central nervous system) Lyme with 28 days of IV antibiotics. The Seattle Dr. says it will take 1-2 years, but he is confident he can treat with oral antibiotics. The neurologist says to treat the symptoms in the absence of confirmed blood tests. The Seattle Dr. says to base the diagnosis off clinical symptoms. The acupuncturist says he can treat with a high dose of salt and other supplements. The Seattle Dr. says only a couple of supplements are needed. Everyone tells me to take Ambien, but without it, I now can't fall asleep, and I don't hear Kellen crying.

I know there are differing opinions in medicine, but this is outrageous. It is appalling to me that a known disease can have so much controversy and variable treatment decisions. It's even worse that they can't discern between Lyme and not Lyme and create a legitimate and accurate diagnostic test.

I go to doctors because they are supposed to know. I don't want them to make me more confused! This is my health, not a risky investment that I should be wavering back and forth about. There just shouldn't be this many decisions that *I* have to make.

Lights

I have a lot of weird symptoms. And they didn't really add up. It's hard to say I have something neurological when my joints hurt. And it was hard to think I had something like Rheumatoid Arthritis (which they ruled out) when my mind was all crazy (and I was/am forgetting how to spell words).

One of the many neuro symptoms has been a strange sensitivity to light. When we went down to San Diego, I noticed that any time we were in a restaurant I would get really sick all of a sudden. The lights would make me dizzy, and then I'd lose my appetite. No good. I've realized that it's mostly in dark rooms (or at night) with some kind of weird low lighting (like restaurants). It also happens if I'm talking to someone for a long period of time and have to concentrate on looking at them (like a doctor's office).

So if I'm around you, and I use my hand as a visor or wear sunglasses inside, it's not personal. It's just me trying to lead a normal life as I can without making myself sick!

The irony of feeling better

Yesterday I was exhausted and totally run down. And as crappy as that was, it was actually a good sign. The antibiotics are supposed to cause die off, which activates your immune system, which produces cytokines, which makes you feel like crap.

Today I feel ok (but I also didn't take my yeast medicine because we are waiting to pick up the pills this afternoon). And while it's nice to feel good and get stuff accomplished, it means my body isn't killing stuff off.

It's strange to want to feel sick, to wake up hoping that you will feel worse today than you did yesterday, but I think that's kind of the point in the first few months of treatment.

With that said, I always have a 4-7 days where I am relatively symptom free, and that's about right now. As long as I'm feeling good, I'm going to take advantage. And the hope is that I'm in the 30% who start to make significant improvement within three months! Then I can feel better for good!

Some information about Lyme

When the neurologist called me on September 24th with the suspicion of Lyme, I researched everything I could about this disease. I knew NOTHING about it, not having lived in areas where Lyme was particularly endemic. I had no idea that I was being thrown into a very political disease and that I would have to immediately chose sides, one side being the CDC and the IDSA (Infectious Disease Society of America) and the other side being ILADS (International Lyme and Associated Disease Society). I am on the ILADS side, in part because I didn't get treated immediately after becoming sick.

When you balk at the CDC, you had better have a good reason. I think I do. I've read the scientific articles, I've talked to patients (at lymenet.org), and I think I understand the reasoning behind the CDC and IDSA criteria. The CDC diagnostic tests were meant to be used as surveillance and not diagnosis. The blood tests miss 30-40% of Lyme patients. In a way, I am really lucky that my test was positive. It may not be a pure positive (the test showing active infection was positive and the test showing previous infection is negative). But it was enough to get us to the Lyme doctor and for him to explain a process called epitope switching, which explains the blood test.

I'm also lucky I had Bell's Palsy. A lot of people have vague symptoms, like fatigue and muscle soreness. Bell's palsy is a major symptom of Lyme, and it usually happens before the other neurological symptoms (as mine did). It's much easier to be recognized as a true case of Lyme with that symptom (though I can tell you it felt like an event in and of itself!).

I know some of you have expressed interest in researching Lyme, so these are good resources:
The movie Under Our Skin, which can be seen here.
The book Cure Unknown, which is a fast, easy, and really fascinating read.
Dr. Oz on Oprah & Friends radio program (about 10 minutes) here.
Why treat with long-term antibiotics here.
Connecticut Attorney General investigates IDSA's Lyme position here.

I will keep updating resources that I think are helpful and put them in the sidebar.

First day of meds

Now that we're home, I have my prescriptions filled. Without insurance, they would have cost over $700. Instead, it was only $150. Yikes!

I'm still trying to figure out how and when all the meds are supposed to be taken. The thyroid meds are supposed to be taken 30 minutes before breakfast. One of my meds is supposed to be taken twice a day, but the second dose is between 1 and 3 (I think). I can't take one of my meds within an hour of my antibiotics. And on and on. I have a hard time taking one pill once a day in the morning, so I think I need a chart to make sure I get everything in. I'm sure once we add in three more antibiotics that will make it even less complicated!

Someone on one of the Lyme forums refers to the drug cocktail as Lyme chemo, and I think that's a good way to look at it because people understand chemo. The idea that antibiotics could make you sick and possibly sicker is foreign to people, but they understand how hard chemo is on the body.

Regardless, I am just glad to be starting treatment. It's the first step back up the hill.

Giant Microbe

We extended our stay in Seattle so that we could explore the city. We didn't expect torrential rains!

In our attempt to get out of the rain, we wandered into a cute gift store. It's one of the best I've ever been in.

What did we find? Lyme disease.















It's a giant stuffed spirochete representative of the Lyme bacteria. It's actually a pretty good visualization tool. Kellen likes to bite its head. I like to think of them uncoiling and falling over dead!

Have you ever wanted to give someone Herpes or chlamydia? You can find them here: http://www.giantmicrobes.com/

Diagnosis

We are in Seattle to see the Lyme specialist.

And we officially have a diagnosis.

He is sure that I have Lyme, and he thinks it is likely that I have Bartonella. He also thinks I have a yeast overgrowth, but that isn't surprising given previous yeast issues.

They aren't sure whether it's from when I was bitten by a tick when I was 10 or if it was from a more recent tick bite that I'm unaware of. A large number of Lyme patients are bitten by baby ticks the size of a pin, and they never know it.

There is great controversy in the diagnosis and treatment in Lyme, but this particular doctor sides with ILADS and treats for a longer period of time. The average treatment time is two years. If I was bitten by a tick shortly before the Bell's Palsy, it may be a shorter course of treatment (like a year!).

There is also the possibility of transmission to a baby, so Kellen could possibly be infected. He can be tested at 18 months. Dan will also need to be tested. I will need to be on a course of antibiotics for any subsequent pregnancies.

This week I start a heap of drugs. I'm going back on synthetic thyroid, as it is likely the Lyme that has made my thyroid fluctuate and made weight loss nearly impossible. I will also start treatment for yeast issues, as they need to reduce the yeast load in order to keep from overloading your system when the Lyme bacteria start to die. I will be taking some vitamins that help strengthen my body to fight the infection. And I will also start one of my antibiotics. We actually won't start the Lyme antibiotics for a month. We are essentially preparing my body for the proverbial Bazooka.

I have been given a 90% chance of getting 80-100% better. Those are good odds (though after the year I've had, I never presume to know which side I'll end up on).

While I don't want to be sick, I am relieved to have a diagnosis and a treatment plan.

Waiting Sucks

It's been one week and three days since the neurologist called to tell me I might have Lyme. Ten days ago I thought I was crazy, I must be inventing symptoms, simply a response to a very stressful year. Ten days ago I had no idea about the politics of Lyme, that simply getting a diagnosis could be a challenge. Ten days ago my family thought I was a hypochondriac, literally turning away from me moments after asking me how I was feeling. I think they thought by listening they were reinforcing attention-seeking behavior. Instead they were marginalizing very real and very painful symptoms.

In ten days I've read a binder full of studies. I've finished Weintraub's book Cure Unknown. I've finished Under Our Skin. And I've gotten sicker.

Because ten days ago, my flare up also started over again. So while we wait for answers, I get sicker. While I wait, I visualize bacteria replicating in my fingers, my knees, my cranial nerves, my brain. I have named them, those damn bacteria. They're known as the little f***ers. It might be our son's first phrase.

Waiting. It sucks.