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My Lyme Disease Story Part II

Click here for Part I

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 Disease Story – Part I

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 doctor 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 being dizzy was the biggest issue; it was debilitating and frightening. The symptoms came back strongly the day before I went to see the doctor 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.

Click here for Part II.

No One Wants Me

Lyme disease is one of the hardest infections to treat.

This is her story:

I saw my neurologist today. She told me “no one wants Lyme disease.” She was referring to doctors, though it is an appropriate statement on many levels. I’ve been trying to get in to see the infectious disease doctor here. The infectious disease (ID) society is the overriding medical body who makes Lyme recommendations for diagnosis and treatment.

When I call the receptionist at the ID doc’s office (his name is Sky Blue, he he), however, she makes even getting into see him a nightmare. I have been trying to make an appointment for two months. *They* aren’t sure he treats Lyme (uh, he should). *They* told me to get a referral. I did. *They* still weren’t sure the doc could see me. *They* told me someone would call me after talking to him.

*They* didn’t. My neurologist said no doctor wants Lyme.

I can understand.

Lyme disease is so full of controversy. On one side is the IDSA (Infectious Disease Society of America- though don’t let the “America” fool you; many other countries follow their guidelines). They post that Lyme is an easily diagnosed and treated disease. They believe that even if you have late stage Lyme (which causes neurological problems and arthritis-like symptoms), it is treatable with four weeks of antibiotics.

On the other side is ILADS (International Lyme and Associated Diseases Society). They believe that Lyme is much more complex and is very difficult to diagnose and treat. They argue that many people with late stage lyme are “seronegative” (meaning their bloodwork for Lyme is negative). They also believe that the Lyme bacteria is present in several forms (spirochete, cyst, L-form). They believe in long-term, high dose antibiotic therapy (meaning a year or more). The IDSA maintains that there are no empirically sound studies showing that long-term antibiotics are more effective than a placebo. ILADS and associated organizations say that those studies haven’t studied true long-term therapy (i.e. twelve weeks instead of a year or two).

There are many patients who believe that the IDSA is in bed with the insurance companies, denying treatment for chronic Lyme beyond the 28 day criteria. I find this argument to be a bit bogus considering insurance covers things like chemo without a grand conspiracy [this isn’t to say I don’t think there are legitimate problems with our insurance system!]. But I do think the IDSA has blinders on and seems unwilling to say that it’s possible that they don’t know. I think they should encourage more studies, more science rather than telling the other side (a very vocal side) to fuck off.

I fall somewhere in the middle. I believe in science. I believe in studies. I also believe in medicine that hasn’t been proven. My dad’s life was saved because of a clinical trial for recurrent lymphoma. The medicine did NOT get FDA approval. But it cured my dad. Above the science, above the controversy, I want to get better. I am 27, and I want to live a healthy life. While it might sound nice, sitting around my house while it gets messier and messier watching old Showtime television series isn’t the way I like to spend my time. My bed and I have a relationship that is frankly a bit unhealthy (which reminds me I should probably wash my sheets a little more often). I want to write. I want to build brands. I want to engage. I don’t want to curse my computer screen because it gives me double vision. Frankly I don’t care about the ILADS/IDSA bullshit.

I just want my life back.

Which means I have to care. I have to do a lot of research. I read a lot of journal articles and scientific papers (usually zoomed in to 200% or with the font on the internet increased). I try to make informed decisions. I come up with my own hypotheses. I’m pretty sure my doctors hate me because I have more theories than they do and seem maybe slightly crazy with a hint of medical OCD. My labs at the moment are fine. I look completely healthy on paper. Except I’m not.

And no one wants me. If the doctors treat without confirmed lab tests (which were supposed to be used for surveillance not diagnosis) they risk their medical licenses (google Dr. Jones). The doctors seem afraid of this as as a diagnosis (but are free to give me migraine meds without a confirmed lab workup!). To see my doctor in Seattle I had to sign a form that I understood this was an experimental treatment protocol. That doctor continues to treat me. And I probably shouldn’t have gone on this expensive medical dead-end. But the problem is when things happen here (maybe unrelated to Lyme) I don’t have anyone to go see, which makes me a thousand times more likely to go to the ER instead of just calling my primary care doc.

I know this is confusing. I tried to explain it as best I could, and I explained things as I see it (so if you disagree, this is how I view the controversy).

If you have more questions, I can try my best to answer them.

Seattle & Venus

We spent the weekend away in Seattle, our first real weekend away from Kellen. Although we missed him, it didn’t hurt to have a weekend away from the constant demanding needs of another human. The first night we were out to a nice dinner on the water, and another family came in with a whiny toddler, and I wanted to tell them that I had a No-toddler-within-50-feet-of-earshot rule while on vacation, but that didn’t seem fair! We have certainly caused our share of raucous at restaurants.

Our trip was mostly for my check-up with the Lyme doctor, and we decided to add on a couple days away. This was the view from our hotel room:

We watched cruise ships load and unload passengers as though it were a 24 hour cattle call. We made a mental note that if we ever went on a cruise, we’d arrive late and make sure we could afford to be a VIP.

On Friday, I had a PICC line put in. It’s a more permanent IV line that allows me to give myself daily meds that will hopefully penetrate the blood-brain barrier and kick these spirochetes to the ground. After I had it put in, I told Dan we needed to name it. When Dad was sick with cancer and we were being given a five year life expectancy (it’s been nine years thanks to a great clinical trial), we named his IV stand Freddie. Whenever it was time to walk around 4-south, one hand on the pole, the other closing his hospital gown, it gave us a momentary laugh to call for Freddie, the IV stand. I guess it personalizes medicine a little and makes it less scary or… medical.

Dan decided that we should name it Venus, the intravenous PICC line.

Lyme Disease Treatment Options

Lyme Disease treatment options are all over the place – no one can seem to stick to any standard.

This is her frustration:

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 two-fold. 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 blood work,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.

What Dad Taught Me

I’ve been thinking a lot about my dad lately. He was my hero.

My dad was the kind of guy who can get through Ivy League med school by drawing cartoons in the back of the class, and still somehow graduate in front. He wore a necklace that read, “War is not for children and other living things,” and took my family to Peter, Paul and Mary concerts.

Dad never read me bedtime stories. Instead, when I was four, he began explaining the theory of evolution in nightly increments. Tom Petty was often blasting in the car, and he used to do a weird hand-clapping maneuver that involved taking his hands on and off the steering wheel which I found exhilarating. He was lucky not to have been pulled over, but it made him the coolest person in the world.

Dad took me to Washington for our last trip. We sat in on an NPR recording and toured the White House. I didn’t understand why on Earth he would pack in THAT many museums visits into one trip. Turns out, he wanted to cram in a lifetime’s worth.

Dancing was the same thing. My father loved to dance with us whenever he could. One day, he had my sisters and I wear dresses, and gave us all a long, special dance to our favorite music (three-year old Carrie, and seven-year old me picked blended folk -too embarrassing to mention. Our favorite Hebrew album was included in line-up. Luckily, my youngest sister was still too little to talk.)

I never understood why he danced with us that day until years later, after he was gone, when I finally learned what a wedding was.

I could go on and on about my father, about what a wonderful guy he was, how he told us if he had to do it all over, he would have been an architect instead of a psychiatrist…

I can generally pull off humor in the most dire of situations, but when I write about my father, it’s hard. I’m still angry at the doctor’s mistake that caused him to hemorrhage and receive an HIV-infected blood transfusion two months before they started screening blood for HIV/AIDS. My dad was gentle, funny, and brilliant – a wonderful human being. I’m angry that my grandmother lost her only son, and I’m angry my mother was left alone with three kids. It’s a miracle my mother never contracted AIDS from my father, thus everyone else in my family is healthy. (We think my mother has Delta 32, making her resistant to AIDS.)

Still, this kind of thing is not supposed to happen.

On World AIDS Day, I want to look back, to smile and thank him for the presents he gave ME.

To the baby born on January 14th, 1952 at Beth Israel hospital in Newark, NJ, weighing 7lbs 11oz, and to the 42 year old man who stood at 6’4, thank you, Dad, for teaching me that no one is infallible. For teaching me that, regardless of race or socioeconomic status, we all are equal.

HIV/AIDS was still relatively new back when my father was first diagnosed. There was still enough stigma that, even in his obituary, my mother wrote he died of cancer because she was afraid of what the people in our small town would think if she told the truth.

Thank you, Dad, for teaching me the importance of being real and speaking the truth. Thank you for showing me firsthand that we all deserve a voice, especially those sick or marginalized.

I always told people the truth about my father, regardless of what people might think of me or my family. I lost friends, as did my mother, but I always wanted people to know that AIDS can happen to anyone.

I stopped believe in miracles that February. But I started believing in the ability of words to transform people’s lives.

Thank you, Dad, for having a bigger impact on my life than anything else in my twenty-five years. If I could give you all the presents your heart desires, I would.

That you lived gave me enough to last a lifetime.