New Lyme Disease Book

There's a new Lyme disease book out, and you can check it out and purchase it here. 

The interesting part is that the author is the founder and a member of the IDSA, the Infectious Disease Society of America. This is the organization that denies the existence of chronic Lyme disease.

I wonder what repercussions Dr Waisbren is facing for writing this book...

It's supposed to be highly informative and helpful, though I haven't read it yet. I'll let you know when I do, and you do the same.

Go Lymies!

The Infectious Disease Society of America, or IDSA, asked a question on Facebook that they didn't really want the answer to. But they got it anyway. Please give them yours, as well.

http://www.facebook.com/IDSociety/posts/357764004239867

Pushing Through

I had a really bad day this week.

Clammy, cold skin, twitches and tremors, faintness, vertigo, pain, and so on. The next day I was very emotional, tears dripping through my makeup on my breaks at work. I kept calling my partner for help, but she didn't know what to do. She told me to come home, but I wasn't going to leave work.

I still don't know if either of those miserable days were due to Lyme disease or other things. They certainly were major exaggerations of feeling badly.

So what was I to do? I was at work, feeling sick as anything, feeling desperate and humming with pain and misery. On Tuesday, my legs were wobbly and throbbing and I could hardly walk. On Wednesday, I felt that there was no point to life and I could hardly stop crying.

But I did it. Not everyone is well enough to (some people with Lyme are bedridden, for example), but a lot of us are well enough to do at least a little bit of living every day. I am so proud of myself for pushing through the pain.

I was talking to my good Lymie friend K. the other day--in fact, my only Lymie friend in all my life--and I realized something. She is on disability, she is an intelligent twenty-eight year-old with no college degree and no work experience, and almost every day, she goes to the infusion clinic for her IV drip and goes to specialists for her many health problems, which are largely a result of the Lyme disease.

I felt for her so much. I'm not saying she has a miserable life at all; she has a loving husband, supportive and generous parents who are also sick with Lyme, she is lovely and sweet as anyone I've ever met and she has many talents and lots of potential.

But that's the part that worried me, the fact that she is so talented and smart. Because once you're on disability, I think you basically stagnate. There is no one to impress, nothing to prove except that you're actually very sick. No hope for a raise or work that you'll find engaging and consuming. Nothing really to consume you at all.

This is exactly why I am glad I'm not on disability. Without it, life is difficult. I have to struggle through my illness to get through the days. I have to fight off and prepare for the worst of the symptoms, the unbelievable pain and fatigue.

But my life is full, too. It's full of people, activities, ideas, and maybe most importantly of all, hope. A future. So I put up with the terrible symptoms, miss engagements once in a very rare while because they are too much to handle, and most of all, feel carried away on a current of pride every time I push through and show up, succeed, prevail.

I think K. knows that her life could be so much more. I have so much faith in her. She's quite ill, sometimes as sick as me and sometimes worse, but she is a brilliant starburst of kinetic energy, wit as sharp as the edge of a knife, a hapless smile, hope flickering like fireflies in a jar.

So K., if you're reading this, please know that I love you and I am sure of you. I want you to be a happy person. I want you to succeed, to know that the Lyme hasn't gotten you in the end. I want you to push through your symptoms whenever it's possible to do so, to get that education you desire, to become what you want to be, to be with whomever you want to be, to feel the world uncoil at your fingertips. I'll be there for you every step of the way.

Attitude

Lymies: we happen to suffer from a disease that is extremely controversial.

With Lyme, it's hard to find someone who will treat you. There's a constant onslaught of doubts being pelted at us as a group, even as individuals, doubts about whether chronic Lyme exists, doubts about whether the treatments are valid and effective, doubts about whether each of us actually has the disease or whether we have some psychological need to create disease where none was before.

It requires an incredible amount of resolve and self-assuredness to know what your reality is, to be sure that you are sick and that your sickness is real, and that people who doubt you are WRONG.

I am amazed by all of you--by your trust in your own experiences. For eleven years, from age ten to twenty-one, I had Lyme, but after a brief treatment when I first manifested the classic rash (erythema migrans), it was forgotten and it took me those full eleven years to assert myself and to insist to my parents and doctors that I was still sick and needed treatment.

Granted, to become sick at age ten is very different from becoming sick at age thirty or fifty. You don't have a lifetime of wellness to compare your new illness to. You don't have confidence, or certainty in yourself. You defer to the adults around you.

But even so, after I was re-diagnosed with Lyme at age twenty-one, things were complicated. I was treated with oral and intravenous antibiotics for a few months, and then I fell back into a state where I didn't believe my own experience of my body, and I started to wonder if maybe I didn't have Lyme after all (my blood tests were consistently negative--though my neurological scans and other tests were markedly abnormal) and I stopped treatment, threw in the towel, and stopped discussing Lyme.

I wouldn't talk about it, even with my family.

A few months ago, right before I turned thirty, the movie "Under Our Skin" came out, and the realization that I had been sick, was still sick pulsed through my veins. And yet it took me until a few weeks ago to really, truly believe it, and throw myself into treatment. Now my blood tests are positive again.

Now I want to get better. Twenty years after the tick bite.

I must beg a few things of you, Lyme community.

1. Know your body, your reality. If you're really sick, insist on getting treatment. Find an LLMD and get better.

2. Don't be afraid to get better. Even if you've been sick for years or decades, health is the goal. Even if you've gotten used to being sick, to having sickness prop you up like an ugly crutch, try to get better. For example, I realized today that sickness is an excuse for me. Yes, it's a real excuse, not one I've invented, and I never lie and say I'm sicker than I am, but it's also comforting to know that sickness is a good explanation for why I'm thirty and haven't started my career yet, for why I sometimes have a messy home, etc. Again--it's all true, but it's comforting to have the excuse anyway. If that's how it feels for you, too, get past that. Get better.

3. Try to avoid seeking treatments that don't work. I'm thinking of people I have met who do expensive, bizarre things to get better. Unless the treatment has been researched and recommended, or at least has proven to be successful by a great number of anecdotes, proceed with caution. I say this for a few reasons. One is that you might end up spending tens of thousands of dollars on things that don't even work. Another is that we Lymies have to fight really hard to seem sane and not hypochondriacal, like people who get a kick out of being sick, and the weirder we are, the harder it is to be believed by the medical community.

4. To continue from point 3, try HARD to seem very level-headed and practical, even if your Lyme is the kind that makes you feel the opposite way a lot of the time. We must, must, must join together and not come across as flaky. People don't believe us. Doctors lose their licenses for treating us. The less floopy we are, the more we can further our cause.

5. Please do not blame every problem in your life on the Lyme. I've met people who blame the silliest things on Lyme disease. While it's true that Lyme can cause a medley of strange, transient symptoms, there are lots of weird things that happen to you and your body that have nothing to do with Lyme, or maybe it's not the Lyme specifically, but a side effect from your medications, or the psychological fallout from having a chronic disease. If you cry less than you used to, it's probably not the Lyme disease. If you no longer enjoy the taste of broccoli, it's probably not the Lyme disease. Etc. When you blame every last problem in your life on Lyme, people might begin to doubt whether you have it at all. I'm not doubting you. But others might.

6. Finally, live your life. Yes, you are very sick. Yes, it's going to take a long time to get better. But don't make a career out of having Lyme disease (unless you're an activist or a medical professional, or something like that, of course). Try to have fun when you can, try to nurture the love in your life, try to do whatever you can, whenever you can. You'll feel better this way.

So, dear Lymies. I say all this because I've come to notice over the years that some of us get carried away with it, and while this is their right, it hurts the cause. It's true of a lot of chronic illnesses that some sufferers get carried away. But because Lyme is so doubted and controversial to begin with, it's very crucial that we put on a good face for the public. It's unfair. It's totally, wildly, ridiculously unfair that we have to have an illness very few even believe in.

So let's fight this fight. And let's start by being true to ourselves, to our bodies, to our experiences, and to our lives.

The Herx

A Jarisch-Herxheimer reaction (aka a "herx") is, to put it simply, a miserable medical experience. But it's also a very good thing.

Herxing is specific to very few diseases, including syphilis and Lyme disease, which are both spirochetal infections. As I mentioned in my previous post, spirochetes are a type of microscopic organism that look like little spirals.

They are smart buggers, adapting to antibiotics and changes in your body.

It's hard to kill them, but it's pretty much the only way you can get better.

So a herx is what happens when you actually do start to kill them off with antibiotics. I'll explain how it works, but for a more detailed, scientific explanation, please either check it out here or here. So:

1. The antibiotics (if you're taking the right type or types, in the right dose, at the right times of day) start killing the spirochetes. This is good. But if the antibiotics are working particularly well, the spirochetes start to die off very quickly.

2. As they die, their cell walls burst, and the contents spill out into your body. Remember, spirochetes are living organisms--though I can't say I feel bad for killing them.

3. A herx happens if enough dying or dead spirochete material floods into your system, leading to an inflammatory immune response.

4. While you may have an acute, life-threatening allergic response, or a fever that rises quickly (I almost died this way, in 2003), it is more likely that you will just feel awful for a day or a few days.

Herxes come on quickly or take a while to appear, but either way, you will probably feel a worsening of the Lyme symptoms you already have. According to Pam Dodd's Lyme Disease Blog, symptoms could include:

• fever
• sweating and chills
• rapid heart rate or palpitations
• shortness of breath
• muscle and joint aches and pains
• headache
• brain fog
• insomnia
• swollen glands
• ringing in the ears
• sinusitis
• itching
• digestive issues
• unstable emotions
• general feeling of sluggishness

For me, when I'm not feverish, I'm experiencing unbelievable pain. That's how I know the antibiotics are working.

What can you do? You can eat well, drink a ton of water, take your vitamins, and get sleep. Take baths and drink tea. And call your doctor--he or she may want to reduce your dose or have you take a "drug holiday" until the herx has passed.

But remember--it will get better. And if you don't have a herx, the antibiotics are still probably doing their job. It's just one more weird, hardly-understood thing about Lyme disease.

The Life Cycle of the Lyme Spirochete

My doctor explained to me that there are three stages in the Bb organism’s life:
1. Spirochete. This is when the spirochete (again, a coil), just kind of rides your body’s metro system, as a presence in the blood vessels. My understanding is that this is how the infection begins, though the stage is not exclusive to early infection.

Antibiotics such as doxycycline and minocycline are best used to treat the Lyme organism in this form.

2. Cell-wall-deficient form. My doctor told me that once you start using an antibiotic that is effective against the spirochete form, Bb sheds its cell wall and retreats into your body cells—your neurons, your muscle cells, et cetera. Now those antibiotics can’t penetrate your cell’s membranes to get at the Bb. The presence of Bb in your cells is what commonly causes the wide array of symptoms you might experience. Bb is especially drawn to fatty cells, like the glial cells in your nervous system, causing any number of psychiatric, cognitive, or neurodegenerative problems. In your muscle cells, it might cause pain or weakness, for example.

My doc said the best antibiotic—and perhaps the only one—to penetrate the cells and kill the Bb is azithromycin, also known as z-pack.

Borrelia burgdorferi

I have a fantastic LLMD (Lyme-Literate Doctor) in Iowa, where I live. The doctor I was seeing before him lost his medical license (see video in preceding post) so I started seeing this doctor. He is very smart, and explains Lyme disease to me in a way no one else has before, and I want to share what I know with you.

Lyme disease is an infection by a spirochete known as Borrelia burgdorferi (Bb). A spirochete is an organism that looks like a spiral, a coiled spring. Syphilis is also a spirochetal infection, and in many ways, manifests similarly to Lyme.
The way to treat Lyme is to manage the symptoms while getting rid of the spirochete. To manage the symptoms, you might need any number of medications, since Lyme is known for its myriad presentations. For example, you will probably need medications to reduce your levels of pain. Some patients need medications for severe mood swings or cognitive deficits. You might need medications to manage cardiac problems, like blood pressure drugs. Or gastrointestinal support. On and on.

Each person’s Lyme disease is unique, with one aspect uniting all of us: symptoms come and go, they wax and wane, and many are not detectable with standard diagnostic testing. You can probably see what the challenge is here. With that type of symptomatic constellation, there are a whole lot of doctors who are going to think it’s in your head, a response to stress and not an actual disease.

Doctors are not perfect. They are people, biased and jaded like all of us.

The way to get rid of the spirochete is generally with the use of antibiotics. If you have Lyme disease that has become chronic, you’ll probably need antibiotics for months to years. Antibiotics can be unpleasant to take, for a few reasons. One is that they can bother your stomach a lot. Most antibiotics should be taken with a meal, but check with your pharmacist on this. Part of the reason they bother your stomach is because they eat up all the healthy organisms in your digestive tract, the ones that help you maintain a gastrointestinal homeostasis, so to speak. They can also do the same to women’s vaginas, leading to yeast infections. To deal with either of these problems, you should take a probiotic such as acidophilus, available in the vitamins section.
If you’re on intravenous (IV) antibiotics, you have to deal with a PICC line, a port in your chest, or some other way of getting the antibiotics into your blood once or twice a day. I have had a PICC line, and I did not enjoy it, because I found it a little scary to be injecting medicine directly into my blood stream, because it was very hard to shower with the PICC line (it should never get wet), and because I didn't know what to do with the line that dangled down my arm.
All the same, IV antibiotics can work very well, sometimes when oral antibiotics do not.

One other problem you run into with antibiotics is the Jarisch-Herxheimer reaction, colloquially known as a “Herx.” This is a central issue to Lyme disease, and I'll post on it soon.

Well, kids, this has been Lyme disease 101. I will continue to make posts that are educational, as well as very biased posts on the way I see the Lyme disease controversy, and autobiographical posts, about my own experience with it. If you'd like to submit your own story to this blog, please click on the "Share Your Lyme Story" link above. And please, comment, follow, and share this blog.

This is an extremely informative short video on the conspiracy theory behind why Lyme disease is being under-diagnosed and under-treated. Please watch this.

IDSA Propaganda

IDSA-What Is Lyme Disease?

This video, posted on the IDSA website, is a bunch of lies based on half-truths. What they’re basically saying is, Lyme is no big deal. Don’t pay any attention to it. While it is true that a patient can be quickly and appropriately treated with Lyme disease and get better, it is not what always, or even usually happens. And the story told by that airhead actress about how she was completely cured by Day 3? Total BS. Or, maybe a person rarely experiences that. And maybe some patients have their Lyme caught so quickly they never even have symptoms at all. But the IDSA wants you to think her so-called testimony is representative of all sane people bitten and infected by ticks. It’s bunk, okay?

My Story

This is me as a baby, healthy as anything, unbitten.

To become seriously ill at age ten is to have your entire conception of the world inverted and distorted, sharpened into prickly shards and bent around shadowed corners. Or at least this is true of any malady that defies diagnosis and/or clear boundaries between the imagination and the body. Surely it is true of hard-to-detect genetic disorders, mental illnesses, and Lyme disease.

What I mean is that if a child is stricken with a disease that is confusing for adults in any way, the child cannot rely on herself to be certain of what is real, what is the truth. Unlike a grown-up who gets sick, a child has neither a healthy point of reference to compare new symptoms to, nor the confidence to defend herself against adults’ doubts about the reality of her symptoms.

I contracted Lyme disease in 1992, the summer before fifth grade, in New York. That July, everyone was getting bitten by ticks at the Bronx Zoo, where I attended a summer camp. Eleven years later, I met a woman in the parking lot of my infectious disease doctor’s office. As I leaned on my cane and sweated in the spring heat, she told me she had worked for the zoo in the summer of ‘92, and had contracted Lyme disease there. She was angry at the zoo, which I didn’t understand at the time, but now I think I do. You can’t be angry at a tick.

One evening my back itched terribly, and I scratched so incessantly that my mother asked me to lift my t-shirt. The next day, both of my parents took me to the dermatologist, to show him what was on my upper back: two raised, red bullseyes next to each other, connected by a puffy, angry arch. The doctor looked at my back through his magnifying lenses, which made his eyes loom large. It’s probably Lyme disease, he said, and the blood test supported it.

That past winter, I’d heard a news piece on the car radio about the dangers of an epidemic called Lyme disease. I’d assumed people got it by eating rotten limes, and now here it was, promising to make my summer both exciting and unpleasant.

The doctor prescribed an antibiotic not typically used for Lyme disease—I believe it was erythromycin—because the right one sometimes stained children’s teeth. I took it for two weeks and life continued, though I remember being disappointed in how quickly my share of summer drama had gone away. Except for a bad case of sun poisoning as a result of antibiotic-induced photosensitivity, my tangle with serious illness had not been serious at all. Chicken pox had felt far worse.

Age eleven: I’m having fainting spells, tremors, and wild tantrums.

Age thirteen: I’m suffering from manic episodes and transient and shifting aches and pains.

Age sixteen: I’m cooling my heels in an adolescent psych unit for the better part of a year.

Age seventeen: I’ve completely lost my flair for mathematics, I nod off without warning all the time, I alternate between intense depression and burning hyperactivity, and my body can handle neither medications nor vigorous exercise.

Age twenty-one: I’m in college in Upstate New York, and I’m burnt out from feeling bad. I feel so bad that I rarely leave my bed, I don’t go to classes, and I shake solipsistically for hours at a time.

I go back home to Long Island, to my parents’ house. It takes some battling to get them to listen to me, to my wheedling insistence that I am sick, not a hypochondriac as they came to believe over the years when medical tests yielded absolutely nothing. Then they rally themselves and my mother takes me to doctor after doctor, just like she did when I was in my early teens, except this time we are more demanding. We want the doctors’ attention.

One morning, my mother drives me into Queens to see a hematologist to rule out my internist’s half-baked suspicion that I have some atypical form of leukemia. The doctor and her assistant literally laugh me out of the office, and in the car, while I hiccup and dribble tears down my shirt, my mother berates me for “throwing a tantrum.” She is burnt out herself.

That afternoon, at a dermatologist in Manhattan, my mother displays some kind of regret for her earlier behavior by reciting my disturbing list of symptoms to the doctor. It is for my benefit really, to make me see how sorry she is, and how much she believes me. And even so, the doctor hears it all, believes me in some implicit way that still makes me reel when I recall it, and asks me if I’ve ever had Lyme disease.

Controversies

I never considered the fact that controversies could be like tornadoes, picking me up, spinning me around, setting me down somewhere new, disarrayed and disillusioned. And yet, this year alone, they have, several times.

There was the assault I was victim to in February, after which the perpetrator walked free (never arrested) because I suffer from a mood disorder that rendered me culpable, without credibility.

Or the fact that I am a lesbian making it very difficult, if not impossible to proceed with my relationship in the manner I’ve dreamed about all my life.

But the most afflicting controversy in my life, the one that has spurred me to create this blog, has been about Lyme disease—whether it is a quickly-treated illness, earmarked for an obscure, forgotten shelf in the library of one’s life, or whether it is the life-destroying, chronic ailment that many insist it is—not obscure, not forgotten, but the library itself, the old, crumbling bookshelves, the dark corners behind the stacks, the oppressive quiet of a bad, bad place to spend one’s days.

The truth of it is that I am quite sick, have almost always been sick, and if everyone could just stick to the facts of Lyme disease, no more, no less, I might be healthier, more successful, happier. This controversy has effectively ruined my life.

I seek the truth. Do you?