Writing About Lyme
Writing About Lyme
I live with Lyme disease. I won't write here about the daily travails. Frankly, it gets boring. Perhaps, if there's interest I'll give periodic updates. I will write an introductory piece that records the challenging path to diagnosis, as a part of the body of work out there documenting the vagaries of this disease and our medical system.
I'll also write about the science and "controversies" surrounding Lyme disease. My hope is to make it understandable for the layperson. I'll collect good, informative links, also.
Why do this? Well, of course, it's of interest to me. More than that, there is a lot of misinformation out there. Only a few months ago, a friend of mine took her daughter to the doctor's office with an engorged tick attached to her body. My friend didn't want to remove it improperly. So, off they go to the doc. What does he do? He plucks it out and throws it into the trash and says, "done." When she told this anecdote I was horrified. That tick should have been sent off to a lab for testing. I instructed her to go back to the doctor and demand a round of anti-biotics for her daughter. Which she did. Thank goodness.
Lyme is a very challenging disease. It doesn't follow any rules, really. 50% of the people who acquire Lyme never have that bull's eye rash. 35% of them will test negative on the standard Lyme test. Some never exhibit the early flu-like symptoms. Some get neurological symptoms without arthritic symptoms.
One thing we know for sure: the best chance of actually getting Lyme out of your system is to get anti-biotics right away. The longer you wait, the less likely you are to banish it. So, if you've been bitten and you can't confirm that the tick did not carry the spirochete, you should protect yourself with a prophylactic course of anti-biotics.
How was it that this doctor didn't know that? We live in Lyme Country. Still, practitioners are not being properly educated about Lyme. That leaves it up to us to educate each other so we can protect ourselves. Hence, I will do what I can right here.
Lyme Doc in Theatres
Lyme Doc in Theatres
The award-winning documentary about the politcally-charged epidemic of Lyme disease has finally had it's theatrical release to lots of rave reviews. If you've ever known someone with Lyme disease and couldn't understand why why her doctors weren't helping her or his insurance company was refusing to pay for tests and treatment or how this disease disabled not just her body, but her entire life, then this film is a must see. What's happening around Lyme disease is a tragedy of epidemic proportion. We need more research to find out how to help patients with Lyme and we need legislation to protect doctors who are trying to help while the science is unclear.
Please go see this film. And send everyone you know. It is important that we all become aware of this situation. It is a stark example of what is wrong with our health care system. A system that is about profits, not patients.
The following is a pleas from the makers of the film:
Dear Friends & Fans:
Following the June 19th theatrical release of UNDER OUR SKIN in New York, enthusiastic film reviews are piling-up. Stephen Holden, top film critic at the The New York Times called it “heart-rending” and an “inflammatory documentary [that] takes aim at the medical establishment.” Here is a sampling of other reviews:
“Head-spinning…riveting…a rigorously researched and highly thorough piece of investigative reporting.”
- Lauren Wissot, Slant Magazine
“Infectiously persuasive…targets both the heart and brain.”
- Sarah Sluis, Hollywood Reporter
“A powerful film and cautionary tale….as significant as Michael Moore’s SICKO.
- Curt Schleier, Film SoundOff
“[A] dizzying and dramatic documentary…handsomely reported and photographed.”
-Andrew O’Hehir, Salon
“Gripping, brilliantly executed...a true landmark of the genre...UNDER OUR SKIN triumphs!”
- Paul Bower, Tiny Mix Tapes
“A scary expose [and] damning indictment of the broken health care system.”
- Kam Williams, NewsBlaze
“Compelling…makes a very convincing case [about] one of the greatest medical failures of all time.”
- Matthew Lucas, From The Front Row
“A vital, insightful, brave and moving documentary that will wake you up and shake you up.”
- Avi Offer, NYC Movie Guru
While positive reviews and press coverage have been abundant, box-office returns are all that counts to keep up the momentum. We need to take the film and the issue from Lyme Street to Main Street, and the best way to make this happen is to fill seats in theaters. Even if you’ve seen the film, we’re calling on you to make it to the theater or buy advance tickets. Make your voice heard through the box-office!
UNDER OUR SKIN is showing right now or starting this weekend in the following cities: Los Angeles, Washington, DC, San Diego, Santa Cruz, New York City (24th-25th only), Chicago (28th only), Albany (24th-25th only), Red Bank, NJ (25th only) and Shepherdstown, WV (26th only). Click here for a list of all upcoming screenings, and click here to find out ways you can help.
All nationwide theatrical screenings on Saturday, June 27th are presented in conjunction with President Obama’s Organizing for America’s National Health Care Day of Service. We are joining with hundreds of others grass-roots activists and initiatives to bring awareness to the country’s failing health care system. Bring a posse with you, join with others, and turn a trip to the movies into a vote--and demand--for change!
Sincerely,
Andy, Eve, Kris & the team at Open Eye Pictures
Eek! I Have to Write a Bio!
Eek! I Have to Write a Bio!
I've entered the world of political advocacy lately because of what I've experienced with Lyme disease. I've always been passionate about the meta-issues that are addressed in politics, but didn't really know how to get in there, where to begin, what meaningful role I might play. Advocating for issues related to Lyme Disease is so concrete for me, it's a natural place to dive in, I suppose.
Of course, since i'm living with a debiiatating case of Lyme, it's a bit tricky figuring out exactly what I might do. Writing has to be a big part of that. I can't talk on the phone. It quite literally hurts my ears, both externally and internally, and I can't hear well and I lose focus. I can't go to a lot of meetings. If I could, I'd be working a real job. But I can write. And I can do some behind the scenes organizing.
Recently, I've been invited to write on a fairly well-traficked political blog. I'm honored to be invited. My first hurdle to activating this invitation, though, brings up a lot for me. I have to write a bio. Eek!
I've never been good at the "sum yourself up in a paragraph or two" exercise. Of course, you can never get a full sense of somebody from these. I guess, I just have a hard time figuring out what's pertinent and/or interesting enough for the context. Additionally, I'm now a little self-conscious about my current state of being. My bio 4 years ago would look very different than it does now, in terms of "what I do". What do I do anyway? Why would anybody be interested in hearing what I have to say, now that I'm just a homebound do-nothing?
In letting my new supervisor know that I was struggling to write a bio, I wrote this:
Okay. I guess I'd better get to it. I haven't had a photo taken in a while. And I absolutely struggle with "bios". Especially now that I've been disabled with Lyme the last few years, because I feel so "useless". I don't like it to define me, and yet, it defines my lifestyle. I'm like 3 people, the girl that grew up in a very abusive, ever-moving military household, the young woman who did a lot of work to gain emotional health and be the vibrant, active, world-traveling person she really is, and now this practically homebound mother,trapped in her mind by a devastating disease. Of course, it's brought out the writer me and all my passion has to go there and into my parenting, as I have no other way to expend it. It's strange though, to realize that I used to backback through Brazil on my own, travel to Sri Lanka and the Maldives on my own. That I SCUBA'd and rode horses and skied a crevasse and started businesses, gave birth at home. That I took a 3-year course in being a spiritual therapist just after getting my MBA. That I've lain down in front of machinery to protect a compost site and faced off with the highest-powered lawyers in Boston to protect my friend. And now, a couple of hours in the local park can leave me bedridden for days.
Yes, a couple of hours in the park can do me in. I learned a hard lesson yesterday about what kinds of things I need in place if I'm to try and go out. This might be hard to understand if you're a healthy person. The Spoon Theory may help you get a glimpse of what it's like to live this way.
What kind of life is this? What kind of bio does one write when this is one's life?
Ray of Hope
Ray of Hope
In early April I reported some of what I learned from some neurological tests done in New York City. Yesterday, I saw my lead neurologist and learned even more, so I thought I'd let you know about it as part of Lyme Awareness Month.
My neurologist has been doing some groundbreaking research regarding Lyme. His view of what Lyme does to the body and what can be done to offset that is very interesting. Moreover, how insurance gets in the way of me and many Lyme patients receiving treatment and what that can lead to is devastating. My experience highlights why we need legislation that removes the for-profit motive from health insurance. My neurologist highlights just how important it is to have a dedicated doctor who not only doggedly pursues finding out what you need to regain health, but does all he can to help you navigate the purposefully mismarked insurance landscape.
The neurology specialist in NYC had informed me on the spot that I had acquired Dysautonomia. As a result of having Lyme my autonomic nervous system was now damaged. This explained my erratic heartbeats, dizziness, difficulty breathing and much of my digestive difficulties, as well as, why my body couldn't regulate temperature properly.
What I learned yesterday is that the Lyme didn't just progress into my autonomic system, it triggered a neurologic auto-immune disease (NAID). I now have a Lyme complication called Chronic Inflammatory Demyelinating Polyneuropathy (CIPD). (Similar to MS, but in the peripheral nerves)
What is CIPD?
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.
This is scary stuff. It's a far cry from being told in 2005 that I didn't have Lyme. It's a leap across The Pond from being told, when I was finally diagnosed in 2007, that Lyme is easy to treat with just a few weeks of antibiotics. It's the polar opposite from this idea that there is no such thing as Chronic Lyme.
What I'm learning now is that there is no proof that the infectious spirochetes can ever be eradicated from the body. In fact, there is "culture supported data suggesting otherwise". (See study by Hunfeld et al)
Additionally, "persistent presence of non-infective Lyme spirochetes after adequate antibiotic treatment can lead to ongoing disease due to autoimmune mechanisms". And there is the highly likely presence of other tick-borne agents creating persistent illness.
This disease is anything but simple. There are at least 120 strains of the spirochete in the U.S. and we are learning that each one interacts with the body differently. Then there are the common co-infections of Babesia, Bartonella and Ehrlichiosis, to name just a few. Each patient's physiology has it's own susceptibilities and unique immune system. The spirochete itself can hide in tissue inaccessible to our antibodies and to antibiotics. It also changes forms, making it harder to detect and treat.
So, there are at least three possibilities for why some patients end up with "Chronic Lyme" (I use the phrase here to mean that the patient continues to be symptomatic once having had Lyme and having been treated with antibiotics.) First, the spirochete may not have been eradicated. It may have gone into hiding once faced with antibiotics, but can re-emerge. Second, the infection may have triggered NAID. Third, the patient could be experiencing both.
Now back to my case. I am a case of "treatment failure" and am still suffering due to having contracted Lyme Disease. The recommended treatment to help with the CIPD is Intravenous Immunoglobulin (IvIg), a human blood-derived product. It is extraordinarily expensive and comes with risks. However, insurance companies deny any treatment beyond a few weeks of antibiotics for Lyme Disease. So, my doctors had to find a way around that.
The current plan is for my PCP to submit the CIPD diagnosis and to have the IvIg given as a prescription which will be administered at home after the initial treatment. (It's a 4-hour session, once per week, for 9 months to possibly years.) The doc had to search for a company that could administer the treatment and was 'in-network' for my insurance plan. They will not be told that I am/was a Lyme patient. I am now a CIPD patient. All paperwork will have to be submitted under that diagnosis. We'll know in the next couple of weeks whether this will cut through the insurance roadblocks to treatment.
Here's the thing that makes me nervous. I am still going to be receiving weekly injections of Bicillin to keep whatever spirochetes are in my body at bay. That is, I'm still seen as a Lyme case. I am consistently told, however, not to mention this, as it will trigger the insurance to reject coverage of any treatment. But, what if I have a reaction to the treatment that puts me in the hospital? What if I have another health problem (they just discovered an "odd" cyst on my kidney, for instance), where I would not be getting my injections or I would not know if there are possible complications to consider because of the Lyme in my body?
It's not just the insurance company I have to worry about. Doctors don't treat patients with chronic Lyme respectfully. Since they don't believe it exists (despite lots of studies demonstrating the persistence of the spirochete) they think the patient is a hypochondriac or some other kind of psychiatric case. Once a doctor has decided that about you, it clouds his judgment about acknowledging your suffering or need of treatment for anything. I simply don't feel safe in a hospital where I might encounter dismissive docs. That's not good. I shouldn't be afraid to go the hospital. (more on treatment failure, what's behind this a Lyme patient's fear of doctors and what all of us can do about it in my next entry.)
For now, I'm going to do all that I can to get this IvIg treatment. At worst, I won't tolerate it and we'll have to stop. If I can tolerate it, the very least I can expect is symptomatic relief for some of my peripheral neuropathies (burning/tingling/numbness in extremities and the shaking). This may not be permanent. It's different with each patient, from what I can tell. At best, it might arrest the auto-immune disorder raging in my body. If that is the cause of some of my symptoms, I may not see those symptoms re-emerge.
What's unknown, is which symptoms I have due to the autoimmune disorder and which, if any, are permanent damage from the Lyme or ongoing symptoms of active infection.
The hope is that with the earlier treatments of big doses of antibiotics, we beat the active infection back enough that the ongoing low-dose injections are keeping whoever remains in my system in hiding and inactive. If that's the case, I shouldn't see a worsening of symptoms once the autoimmune disorder is arrested.
Of course, how we'll know what's been arrested and what caused what is very unclear. Still, it's my only hope. If the autoimmune disorder caused the Dysautonomia then the IvIg treatment could restore my autonomic system to normal and my heartbeat, breathing, digesting and temperature control might start functioning correctly. That would be life-saving. So, it's worth it to me to find out.
** quoted phrases are from "An Approach to the Diagnosis and Treatment of "Chronic/Post-treatment Lyme Disease" by Amiram Katz, MD and Janet M. Berkley, RN (Department of Neurology, Yale University School of Medicine)
Past Articles
Lyme Time
Lyme Time
I've always been a competent person. I've always had my own brand of competitiveness: the competition was about me doing the best I possibly could. I was an athlete. A state-ranked runner who held a long-standing school record for the women's 880. (Yes, this was before U.S. track went metric.) I was an honors student, tutored, participated in school plays, volunteered at the town's recycling center, planted flowers in median strips for the local Rotary Club and still managed to hang out with my friends and generally have a lot of fun. I was high energy.
This pattern continued for most of my adult life until about 3 or 4 years ago. (it's hard to pin down exactly when I started shifting gears.) In my twenties, I managed million dollar computer installations for major newspapers, played competitive couples tennis (we never lost), ran road races, skied, and traveled quite a bit. Believe it or not, I didn't consider myself a high achiever. I wasn't seeking monetary wealth or a top rung on any ladder. I was simply driven to live life to the fullest and to follow whatever path I felt compelled to.
I was so confident in my own resourcefulness that I was never concerned with the risks of a complete career change, or pulling up roots and moving. I was high energy and fast-paced. Even having a baby didn't slow me down. I was the CEO of a composting company while pregnant. Worked at the site and on the equipment until 1 week before giving birth. Put that baby in a sling and brought her to meetings about 1 week after she was born. I saw no reason I couldn't nurse a baby and do a job and, so, I did them both. And kept on "doing it" (probably with Nike's on!), or trying to, until the summer of 2005.
In the summer of 2005, I suddenly realized that I was tired all the time. I used to be the best sleeper on the planet. Go to bed, head on pillow, sleep with barely a movement, wake 8 hours later completely refreshed. That changed. Now I was having difficulty getting to sleep. I was waking in the night with aches in my bones and tingling and burning feelings in my hands, feet and face. In the morning I felt like I was hung over. I just couldn't get enough rest. I didn't know it then, but I had entered Lyme Time.
Lyme Time is life in a different operating zone. I had transformed from being the most organized person I knew to someone who couldn't find her keys and didn't know how to manage a to-do list. From someone who could run from one task to the next, with meetings and crises thrown in, without a hitch, to someone who couldn't recall why she had gotten up out of her chair and how much time had passed since she had stood up. Until then I had navigated the world on my own. Literally. I had backpacked solo in Brazil, vacactioned solo in the Maldive Islands, traveled with friends to numerous countries with ability to grab a phrase book and figure out how to get around. Now I was getting lost on the 8 minute drive home from work or on the way to the bathroom.
Forget all the aches and pains, the tremors and the twitches, the tinnitus and the hyper-acusis. These things had crept up on me. I kept telling myself I was just stressed. After all, I owned a business and was raising a young daughter. It's when "The Fog" kicks in that you truly enter Lyme Time. When you arrive at work hours later than you expected and you don't really understand why. When you realize that you're not seeing straight in the morning. I don't mean confused, I mean, your vision is so blurry the whole world seems under water. and that you have no idea how long you've been awake before you are able to walk across the room. You're so confused about basic things that you can't even make simpe decisions or discern what you're doing. Or even remember what you've done or not done. This is Lyme Time.
Suddenly, you're unreliable. You're disorganized. You can't be trusted. You can't take care of yourself, much less your child. The days, weeks, month float by. Appointments are missed. Tasks go undone. Life falls apart.
How does this happen? It starts with a tick bite. One you may not know you've gotten. The tick passes along a parasite: Borrelia burgdorferi, the Lyme spirochete. I won't go into all of the biochemistry here. The parasite itself is not the problem, per se. If it would stop releasing all those neurotoxins, it could be a welcome guest. But it does release those neurotoxins.
When I went to the doctor in 2005 seeking help because I wasn't feeing well, I described my malaise as "feeling like I've been poisoned." It took them 2 years to identify that I had Lyme disease. And, guess what, I was being poisoned. Poisoned with neurotoxins. Released in the brain and the joints and the eyes and any soft tissue it can embed itself into. I still am being poisoned. That's because, the longer you go before receiving treatment, the harder it is to get this bugger out. (I'll explain why another time.) So, I live in a constant state of being poisoned. It's a strange existence.
I'm in treatment now. Getting weekly injections. I felt somewhat stabilized cognitively over the summer and early fall. But I'm not better. The disease isn't gone. Ironicially, what I most wanted to clear up - the cognitive impacts, has gotten better with treatments, but that has only made me all the more aware of just how persistently badly I feel. I have more clarity about the unknown prognosis. With that clarity came some depression. I might have realized then in the past few weeks when the depression seemed to be lifting that I was getting 'foggy' again. It wasn't until I had a seizure that I got it.
Why did I have a new bout of cognitive dysfunction? Who knows? This disease operates under it's own terms which it chooses not to disclose. It's a stealth spirochete. The Dick Cheney of biology: it claims all your executive power whilst hiding out and avoiding accountability. It does seem to have cycles. It definitely acts up if I "over-do it". What this means, though, is that I am not self-sufficient. I am unreliable. I am highly sensitive (sensorially.) Like a canary in a coal mine. I am so many things that I never wanted to be. So many things that I always judged others poorly for and felt supremely self-confident about. I suppose I am humbled. I have had people tell me I am more peaceful. That may be the case, but I still wonder how I can work with other people. What I can do to earn a living. How I can feel worthy in my friendships? In any relationships?
Writing here is a test for myself, in a way. Can I be consistent? Can I be coherent? (Some days I can't recall nouns.) Can I maintain a relationship as a writer to an audience? As a member of this community? Is the value of my work diminished if I can't post consistently? (You can't be a "featured" writer here unless you post every day, I don't think. That indicates the value placed on consistent, prolific contributions.) It's not so much about the feedback, as it is about finding my way to accepting what I've become, changing my expectations of myself and carving a way in the world with these new limitations. It's about plowing ahead though I'm not going reap what I thought I had been sowing all these years. It's about trying to be a part of the Prime Time (the normal life) when I am forced to operate on Lyme Time.
That written, I hope to post some more of my observations about the Anglo-Saxon use of the vampire metaphor soon. Soon, being very amorphous in Lyme Time.....
NPR Topics: Science
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