Lyme treatment

I am sitting at the ER. I have had a headache since Thursday with pain behind my eyes. It feels like my skull is trying to break through my eyes and nose and ears. I wish it were sinus related. But it's not.

The reason I'm at the ER is twofold. I want to make sure that I don't have spinal fluid building up in my head. The second reason is more complicated. I was hoping maybe I could switch back to being treated here by my neurologist, who is covered by insurance. My Lyme doctor isn't. She wanted to treat me with IV antibiotics. My Lyme doc thinks that orals are the first line treatment.

You see, Lyme disease is rife with controversy. Does it exist in the numbers that the International Lyme Disease Association says? Are the current tests sensitive enough for diagnosis? Does Lyme seroconvert in the blood like other infectious diseases? Is it easily treatable? Will three weeks (and maybe six weeks) of oral doxycycline treat all forms of Lyme, even if it's late stage, which mine is? Will four weeks of IV rocephin treat neurologic Lyme?

I have Lyme, but my diagnosis is still suspect. When I saw my neurologist in September, part of my Lyme test was positive, the other negative. When I went back for bloodwork,the negative part was now positive. But the positive was negative. Confused? My neurologist wasn't convinced that I have active Lyme disease though I am symptomatic, and my tests prove that I have been exposed to Lyme (and my first test indicated active Lyme).

So I went to Seattle. I tried Levaquin, but it can cause joint inflammation, so any sign of joint pain and they stop treatment (joint pain is common in Lyme). Then I was put on Rifampin, which I have stayed on for months. It treats a secondary infection that is thought to occur often with Lyme disease. It resolved the shooting electric pains in my arms. I was put on Amoxicillin, which I've been on for months as well. Then I tried Minocycline for Lyme. It caused me to walk sideways. I already was dizzy. I didn't need to have sea-sick vertigo as well. Then I tried Biaxin. I broke out in hives. I tried Doxy. It caused heartburn that radiated to the base of my skull. But the doxy DID work. I switched to Zithromax, and all of my symptoms returned. So I'm back on Doxy and taking Nexium to combat the heartburn. The problem is I'm not getting better like I did before.

What's next? IV drugs. Insurance will pay for one month. It often takes more. A PICC line. Daily infusion. I was hoping to get treated from someone locally. But it looks like the doctors here don't want to touch this. When I get home, I will call my doctor in Seattle and wait. And if this doesn't work, I am flying to the Northeast where this stuff is treated often and where it costs a lot of money to see the top docs. I am ready to be healthy. Six months with little improvement is just not acceptable to me.

My Lyme Story - Part 2

Everyday I feel like I am going to die.

It's pretty difficult to sleep at night when you are afraid that you won't wake up in the morning, leaving your 18 month old motherless. And in the *capable* hands of your husband who, when it's his night to make dinner, relies on boxed Mac and Cheese. Without me he'd probably revert back to Kraft, leaving organic Annie's behind.

Neurologic disorders are their own beast, I think. The symptoms are literally all in your head, and yet you feel them everywhere. My feet tingle. Sometimes I can't stand the feeling of pants on my legs because my nerves are hyper sensitive. My hands go completely numb some nights. Just a minute ago I was pretty sure that my tongue had stopped working and that maybe I was having a crazy allergic reaction. When I touch the skin of another person, sometimes it feels like it's burning.

I've been to the ER too many times this last year. At first it was chest pain, which was treated with Ativan. Turns out I have chest wall inflammation. Advil was much more helpful than the anxiety drugs, but I'm a woman so must be crazy. Then I went to a doctor for what felt like the flu in the height of the swine flu outbreak. She listened to my heart, which had become tachycardic. She thought I was having a thyroid storm. Nope. Just Lyme disease. (It would have been helpful to know it was Lyme then.)

Lyme is also extra special because it causes psychiatric changes. Remember IRENE from the Real World? Don't you wish you were my husband? I swing between uncontrollable anger to lying on the floor thinking about death. Suicide is actually the leading cause of death for people with Lyme. When I was first diagnosed and reading about the disease, I couldn't figure out why there were links to suicide prevention lines. I get it now.

And then there's the memory deficits. I've always had a really sharp memory. My mom hates me for it. Pray that your children don't remember every phrase you ever uttered to them! I'm also a word freak and can kick some serious Scrabble ass. But now, I have trouble remembering the word for "countertop" (yep, happened the other day). I don't know how to spell things. And I often just stop in the middle of a conversation unsure of what we were talking about or what I was saying or what I want to say next.

My stomach hurts. My knees ache. I lose my sense of taste sometimes. I can't sleep, and yet I'm profoundly exhausted. I get night sweats. Bright lights bother me. And low lights bother me even more. I feel jittery and can't sit still. But I'm too tired and sore to move. And I constantly feel like I've just gotten off a Tilt-A-Whirl, that's how dizzy I am.

This is my life. I don't tell you this for sympathy. I tell you it because it's real. And frankly it scares the shit out of me.

My Lyme Story- Part 1

I was going to write about the maniac scheduling/CIO/stroller using moms this week, but my funny isn't here right now, so I'm going to wait until it's back. Maybe tomorrow. Maybe next week. But it's coming.

But since I posted my pill picture and Perpetua asked about it, I'm going to share a little about my Lyme disease. Because it's brutal.

I was bitten by a tick when I was ten. It's the only tick bite I remember, though a large number of those with Lyme don't remember a tick bite. There's no way to know if this bite or another was the culprit. I do remember a rash on my hand the summer I was pregnant, and I now wonder if it was from a tick, but there is no way to know. I always had weird medical things happen as a kid though, so we have wondered if maybe it's been dormant for many years. Your immune system has an amazing ability to keep things in check (even if you've been given a taste of that forbidden formula). And your immune system is amazingly susceptible to stress, which arrived on my, well, ashy, crumbling doorstep when I was eight months pregnant.

I had Kellen and went into my six week checkup, where they did a pap, which came back abnormal (yeah, my fall pretty much sucked), and gave me a flu shot. Four days later (and four days after returning to teaching) my face stopped working. I was home nursing Kellen (or trying) and tried to smile at him, at which point I realized I couldn't move the right side of my mouth. Earlier in the day I had noticed that it felt like I was talking with braces on, like my lips were having to make way for an obstruction on my teeth, despite not having had braces in well over a decade. That morning I drank orange juice that tasted dull as well as had a Starbucks sandwich that made me question their place as a food establishment. It turned out that my taste buds were not working on the right side. After I finished nursing Kellen I decided to go back to school to finish teaching. I was really scared but didn't want to deal with it at the moment (because the only two options I could think of were a stroke and brain cancer). As I was driving down the road I lost my ability to blink my right eye. I turned around, and we went to the hospital.

The good news is that it wasn't a stroke or brain cancer, though the way the dr. told me it was *just* Bell's Palsy made it seem so benign as though I hadn't just lost full functionality of one side of my face and now looked like this:

"Are you sure nothing else is wrong?" I asked the ER doc. I just couldn't fathom that the nerves in my face would stop firing just because they felt like it. The doctor assured me that nearly all cases of Bell's Palsy are spontaneous and have no other underlying cause than a small virus. (Had I lived in the Northeast, it is likely I would have been tested for Lyme then as Bell's Palsy is common in Lyme and the first symptom of it moving into your brain, when things get really dicey.) They gave me anti-virals and steroids. (It was because of this I stopped breastfeeding.)

Dan and I decided to head down to San Diego. I had taken a leave of absence from work because I was overwhelmed. The stress of the fire and the rebuild was compounded by this new development, and I knew that I was spread too thin. It has always been hard for me to walk away, and while it was sad, I am proud of my ability to say, "I can't." We left the day after Thanksgiving, a trip that was nearly thwarted by an incredible and overwhelming sense of anxiety. I couldn't sit down at all because I felt so antsy and uncomfortable. It was one of the only times I've ever had the urge to scrub a floor. It's unknown if this was a natural progression of the Lyme or because I had been prescribed Zoloft to deal with the PTSD. It's been posited that SSRIs may actually exacerbate Lyme symptoms in some people (many also find them helpful).

That was also the day that the dizziness set in, and it's kept a firm hold on me for over a year. I spent the entire trip in San Diego sleeping. When I wasn't, I was scared. I truly thought I was going to die but was afraid of going to the ER because I didn't want them to think I was crazy. I wish I had gone while in California.

I made a deal with myself that I would make an appointment with my neurologist in January if I was still sick after Christmas. I scheduled an appointment. That week I woke up and felt fine, nearly canceling the appointment to see the doctor. At that point my being dizzy was the biggest issue; it was debilitating and frightening. The symptoms came back strongly the day before I went to see the dr. It would be the first of many cycles but also the clue that led another doctor to Lyme disease nine months later.

At first I was diagnosed with Benign Positional Vertigo, which is caused by ear crystals shaking loose. The test for this is tilting your head back to see if it gets worse. It did. But the exercises didn't work. So an MRI was ordered. While I passed the muscle tests with the neurologist and chiropractor I was seeing, I drop things a lot (more than normal), so I worried a lot about MS, especially because I was told that mid to late 20s was typical for age of onset. With every click on the MRI machine I just hoped that I didn't have MS and if I did that the test showed it. I didn't want to be sick, but I also wanted an answer to why I felt so badly.

... to be continued.

Lyme Disease Awareness Month

And in preparation... here is some information about Lyme Disease:

What are Neurological Complications Of Lyme Disease?

Lyme disease is caused by a bacterial organism that is transmitted to humans via the bite of an infected tick. Most people bitten by an infected tick develop a characteristic skin rash around the area of the bite. The rash may feel hot to the touch, and vary in size, shape, and color, but it will often have a "bull's eye" appearance (a red ring with a clear center). However, there are those who will not develop the rash, which makes Lyme disease hard to diagnose because its symptoms and signs mimic those of many other diseases.
Seven to 10 days following an infected tick's bite, the first stage of Lyme disease begins with flu-like symptoms such as fever, chills, swollen lymph nodes, headaches, fatigue, muscle aches, and joint pain.
Neurological complications most often occur in the second stage of Lyme disease, with numbness, pain, weakness, Bell's palsy (paralysis of the facial muscles), visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headache. Other problems, which may not appear until weeks, months, or years after a tick bite, include decreased concentration, irritability, memory and sleep disorders, and nerve damage in the arms and legs.

Is there any treatment?

Lyme disease is treated with antibiotics under the supervision of a physician.

What is the prognosis?

Most individuals with Lyme disease respond well to antibiotics and have full recovery. In a few patients symptoms of persisting infection may continue or recur, requiring additional antibiotic treatment. Varying degrees of permanent joint or nervous system damage may develop in patients with late chronic Lyme disease. In rare cases, some individuals may die from Lyme disease and its complications.

What research is being done?

The NINDS supports research on Lyme disease. Current areas of interest include improving diagnostic tests and developing more effective treatments. The National Institute of Allergy and Infectious Diseases, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, and the National Center for Research Resources also support research on Lyme disease.

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.