Saturday, June 4, 2011


When I go through a particularly funky patch, especially when I get mired in self-pity, a gratitude list usually helps.  I have so, so much to be grateful for, it’s humbling. Thus, today’s list:

  • My parents; their support, love, belief in me; everything they do is out of love and the desire to see me happy & healthy.  I could not ask for more.
  • My sisters; they ‘get’ me, support me, accept my foibles, appreciate & remind me of my strengths.  They make me so proud.
  • My girlfriend/partner; she is, in my mother’s words, “the best thing that’s happened to [me].”  It’s true.  She sees me as I am, all of me, the good, the bad, the ugly, and she accepts -- embraces, even -- all of it.  She knows how to ground me and how to reach me when I get lost in the labyrinth of my thoughts.  She’s been through hell and back with me.  She is my family.
  • Musical theatre!  And the opportunities to experience it!  Last night I saw Avenue Q with my sister and cousin.  I laughed so hard!  I love the way theatre makes me feel, the energy I feel as an audience member, the anticipation I feel for the day I can return to the stage.
  • My extended family; they accept me as I am, Lyme Disease & all the bullshit that comes with it.  They offer their support.  They validate my personhood -- I am still a worthy human being, despite the limitations caused by illness, and they never let me forget it.
  • My little cousins; there is a uniquely special place in my heart for my little cousins (who aren’t so little anymore!).  Before I knew anything about Lyme Disease, when I thought I was just dealing with severe, intractable depression and anxiety, they were the best medicine.  My mother would bring me to their house and, for a little while, I felt the weight of my pain & sadness lift.  They were brilliant twinkling stars in an otherwise dark period of my life.  My life is much sunnier now, but they remain sources of light and joy.
  • My cousin, Cathy; before I knew I was sick with Lyme Disease (& all those fun co-infections & opportunistic infections & sensitivities!), I watched her fall ill with a rare autoimmune disease, called Beh├žet’s Disease.  Despite her pain and debilitation, she became very active in raising awareness and money for research of this “orphan” disease.  She kept going.  She served as a huge inspiration for me when I was fighting depression; I recall thinking, If Cathy can get up everyday and face life, despite everything being thrown at her, then I have no excuse not to do the same!  From that moment, I resolved to push myself harder, to overcome what life had thrown at me.  Cathy still inspires me with her strength, determination, & fortitude. 
  • My friend, Heather; Heather is one of the strongest women I know.  She’s also the reason I was finally diagnosed with Lyme Disease (she recognized my symptoms from her own experience with late-stage Lyme), after years of doctor-hopping and misdiagnosis.  She has the hugest heart of anyone I’ve ever met.  I feel blessed to call her one of my closest friends.
  • My friend, Jeanne; We’ve only met in person recently.  I spent 5 days at Jeanne’s house, surrounded by her beautiful family who opened their arms to me, made me feel at home, made me feel loved and understood.  Jeanne has Lyme Disease but, somehow, she still manages to give of herself to others in need.  She is always giving, always looking for new ways to give, to help others who struggle with illness, with lack of support, with anything & everything you can think of.  Jeanne also has the uncanny ability to calm me down with humor & love when I’m catastrophizing and ready to pull out my hair. 
  • The ability to write; I read this quote from Lord Byron recently: “If I don’t write to empty my mind, I go mad.”  That is, essentially, why I write; I must write.  I write to purge demons.  I write to figure out how I feel and what I think and what I believe.  I write to understand myself.  I write for catharsis.  I consider writing a runner-up to breathing, for Things I Must Do To Stay Alive.
  • Energy drinks; My doctor wouldn’t be thrilled to read this, but energy drinks help keep me sane (along with writing, theatre, loved ones, medication, gratitude lists . . . ).  I do my best to drink organic energy drinks sweetened with Stevia, but, really, Red Bull will do in a pinch. 
  • Books; Ask anyone who knows me: I read.  A LOT.  So far, this year, I’ve read 50 books.  I’m currently on numbers 51 & 52 (Swallow the Ocean by Laura M. Flynn & Run by Blake Crouch, respectively).  Next on my list is The Emperor’s Children by Claire Messud

My list goes on and on, but I have tickets to see Billy Elliot tonight (!!!) so I’d better get dressed! 

I would be honored if you’d share some of the things for which you’re grateful, in the comments. 

Thursday, May 26, 2011

You know you have late-stage Lyme Disease & multiple chemical sensitivities when . . .

  1. You’ve had a colonoscopy before your 30th birthday. 
  2. You consider going to the ER for chest pain and shortness of breath, but eventually decide it would be a waste of time and money because the last time you went with the same symptoms, all your tests were “normal.” You figure you’re just having a die-off reaction to your medication, so you do what you can to detox.
  3. You often pass on going to the ER when struck with symptoms that would have a normal person dialing 911. You’re used to these symptoms and don’t feel like dealing with ER doctors who, more than likely, don’t know a thing about late-stage Lyme Disease. 
  4. You’ve had more than one doctor comment on the amount of medication you take, as though you delight in taking handfuls of pills everyday, not to mention the foul-tasting tinctures you take on top of the pills, and the mud-colored drinks you imbibe in an attempt to regain your health.
  5. You’re used to having to explain late-stage Lyme Disease and co-infections to new doctors you encounter. In fact, you’ve been asked by more than one medical professional where you received your medical training. 
  6. Even your caregivers tire of hearing people tell you that, “You look great! You must be feeling better!” Your mother is ready with a canned response, so you don’t have to waste your breath explaining once again that how you look is not a valid measure of your health.
  7. You tell your mother to sit in the waiting room when you know you’ll be undergoing neural therapy at your bi-weekly doctor appointment, because she doesn’t handle needles well and you don’t want to traumatize her by making her watch as the doctor injects procaine into your scalp, your tonsils, your adenoids, your sinuses, your abdomen . . . 
  8. As much as you hate the crown of thorns, you know you’ll feel more clearheaded once it’s done, so you subject yourself to the pain of 10-plus scalp injections. 
  9. When your doctor tells you to take Vitamin C to bowel tolerance, you clear your schedule for the rest of the day because you’re resigned to the fact that you’ll be spending a good part of it in the bathroom.
  10. You’ve come to enjoy getting brain MRIs. You find the pounding of the machine soothing and use the time to take a quick nap. 
  11. You can’t help but laugh when, just before sticking you with a needle, a phlebotomist tells you “This might hurt just a little!” After 16 weeks of IM Bicillin injections into your rear end, the discomfort from a needle in your arm doesn’t even register on your pain scale.
  12. You’re not really fazed when you feel your spleen twitching. You run it by your friends, who’ve experienced similar twitches, and decide you’ll simply bring it up with your doctor at your next appointment. 
  13. Your mother knows that, when you tell her you feel like your brain is too big for your skull, it’s going to be a BAD day and she just tries to make you as comfortable as possible. She doesn’t even bug you about the fact that you drink meal replacement shakes for 2 out of 3 meals; she knows how nauseous you get from these headaches.
  14. Though she still refers to your LLMD as a “witch doctor,” your mother has come to believe in the validity and efficacy of energy medicine and all sorts of ‘alternative’ medical techniques she’d have scoffed at only a year ago.  (Your father doesn’t quite ‘get’ what it is that your doctor does, but he respects your choices and has seen the difference in your health since you began seeing the “witch doctor.”)
  15. Your family members come to you with their medical questions because they know that even if you don’t have the answer, you’ll find it out or direct them to someone who knows. More often than not, if the question is medication-related, you know the answer. 
  16. Your close family and friends know to immediately put you down as a “maybe” for any event that requires an RSVP. They understand that you have good days and bad days, and you won’t know if you can attend a function until you wake up that morning and assess your pain and energy levels.
  17. Your parents and sisters take note of restaurants that are Lyme-friendly (i.e., they offer gluten-free dishes, organic meats & veggies, etc.) and excitedly recommend them to you.
  18. Your girlfriend researches gluten-free alternatives to meals & deserts you love and cooks/bakes them for you every chance she gets.  (She’s totally a keeper!)
  19. When traveling, your parents know to make sure there’s a refrigerator in your hotel room for your probiotics. 
  20. Also, when traveling, no one bats an eye when you order 8 large bottles of spring water from room service. You can’t drink tap water (too many impurities and metals), and 8 bottles is usually enough to last you about 24 hours. 
  21. Your sisters aren’t too fazed by your face mask anymore when you pull it out in public. 
  22. Your mother no longer wears perfume and is learning to clean with natural cleaning products in order to make your environment more friendly for you and healthy in general. 
  23. Everyday conversations with friends, more often than not, meander toward the topic of bowel movements (too frequent, too infrequent, consistency, etc.).
  24. There is no longer any such thing as TMI (too much information) when talking with friends who also have Lyme.
  25. You forget that the dinner table is not the place to bring up the subject of bowel movements. In fact, you forget this quite often because your memory sucks, but eventually your family learns to tune you out. 

Do you have anything to add to the list? Leave it in the comments!

Wednesday, May 18, 2011

A Timely Auction -- SPREAD THE WORD!

May is Lyme Disease Awareness month and this week my friends and I are holding an online silent auction for our dear friend, Heather, who is currently struggling with a lot, financially and medically. 

Heather has late-stage Lyme Disease, like me. In fact, she is the reason I was finally diagnosed with Lyme Disease; she recognized the symptoms that countless doctors dismissed, and encouraged me to seek the opinion of a Lyme-Literate MD. From the time I was diagnosed, she has offered me her encyclopedic knowledge of the disease, co-infections, treatments, and anything else you can possibly think of that’s related to living with and treating this disease.

I’m extremely fortunate in that I have an extensive, amazing support system of family and friends who make it possible for me to receive the best treatment (thanks, Mom & Dad!), who accept me where I’m at, and who never fail to remind me that I can and will get through this. However, my experience is far from the norm. 

Heather, like many people I know who struggle with this devastating disease, lives on her own, with her two cats, and subsists on small disability checks and the money she made by selling her most prized possession -- her violin. You can read more of Heather’s story here:

Heather has recently been faced with some especially tough times, necessitating the near-draining of her bank account. As a result, she’s had to stop treatment for Lyme. With this auction, we hope to raise enough money to replenish what she’s lost and get her back on track with treatment. 

Please, take a moment and check out the auction site:
There are some really great items up for auction, including jewelry, artwork, items autographed by Kristin Chenoweth (!!), services, and a bunch of other great stuff!

If you guys could forward the link to friends and family, I’d be so grateful. We’re trying to get as many ‘healthy’ people involved as possible, because most people in the Lyme community, especially those who have been working on the auction, are in difficult positions financially due to their own health expenses. 

Thank you for taking the time to read and forward this blog post and spread the word! 

Friday, February 25, 2011

A New Doctor, A New Approach

After a year and a half of antibiotic treatment, I have come to a decision: NO MORE! (At least, not anytime in the near future.)

Have antibiotics helped?
Yes, undoubtedly.
Have they been effective enough that I believe further treatment with them will have a major positive impact on my health?

And more to the point, I believe there are underlying issues that must be addressed before I can get rid of these infections. To that end, I have enlisted the help of a doctor with a completely holistic approach.

My appointment was two days ago, Wednesday at 2pm. It was scheduled a week in advance. I was nervous about seeing a new doctor. First doctor appointments are always nerve-wracking because they require me to go over my long medical history, which is an unpleasant trip down a very spotty memory lane. Luckily, I had my mother by my side, filling in the gaps in my memory and supplementing my accounts with her own observations. But, let me go back for a second to say that I was especially nervous about this appointment for reasons I did not understand until it was over.

See, this doctor uses a method of assessment called Autonomic Response Testing (ART). It is a kind of biofeedback muscle testing pioneered by Dr. Klinghardt, a leader in the field of Lyme Disease treatment.  While I am no stranger to muscle testing, I have never undergone this particular type of testing, which is more sophisticated and accurate than others. I knew there was a very good chance that this doctor would be able to detect dysfunctions in my body that other doctors had not been able to identify/pinpoint, and while that is exactly the reason I wanted to see a doctor who uses ART, that is also the reason for my elevated anxiety. I was terrified of what I might find out.

But in my case, ignorance is not bliss; it is an underlying current of anxiety that makes me sicker. So despite my fear, I went through with the appointment and found out some interesting factoids about the current state of my health:

  • I am chock full of parasites! I even have them in my lungs. I had no idea a person could get LUNG parasites!
  • My organs are riddled with mercury. Time for a heavy metal detox!
  • I have major digestive issues. My symptoms made that pretty clear, but then the doctor asked me to stick out my tongue and, upon a single glance, said, “Whoa, YES, definite digestive problems."
  • Thyroid issues, too!
  • I have difficulty eliminating toxins; my liver is particularly overtaxed and angry.
There are more, but these are the major issues right now. I’m not surprised by his findings (except for the lung parasite; that’s just weird), just a bit overwhelmed by confirmation of what I already suspected. Suspecting I have underlying issues that need to be resolved before I can treat Lyme Disease and co-infections is one thing; having my suspicions confirmed in detail is something I need time to digest.

My friends reassure me that knowledge is power, and I know they’re right. Now that I know what’s going on, I can address each problem instead of crossing my fingers and hoping that X treatment, which lasts x many months, will eventually put a dent in the infectious soup living in my blood, tissue, and organs. Sure, treatment will take time and patience, but at least we’re no longer shooting in the dark.

I know that many people are skeptical of alternative medical practices, and they should be. Just as they should be skeptical of any medical practice, including those widely accepted by mainstream medicine. What I like about energy medicine (ART falls into this category) is that, in the hands of a skilled practitioner, it can illuminate root causes of problems, which can then be addressed, instead of simply treating symptoms. I’m also a fan of homeopathy and herbal medicine because, when used correctly, they don’t cause unnecessary damage to the body. They work with the body to strengthen its own ability to fight off infection, instead of against it, killing off both good and bad bacteria. 

Of course, this is simply my opinion and there is no single correct way to regain health. If a certain method of treatment doesn’t sit well with you, trust your gut and go with what feels right. Right now my gut tells me I’m headed in the right direction. I can only hope this is the case and go forward from here.

Saturday, January 22, 2011

Antibiotic Moratorium and Working with Blame

I’m taking a doctor-prescribed, much needed break from antibiotics for the next 6 weeks. All I have to say about it is: THANK GOODNESS!

I’ve felt extra toxic lately, so a break should do my body good. Of course, a break from antibiotics does not necessarily mean a break from treatment; I’m taking a bunch of herbal anti-microbials, which are kicking my butt! However, it does feel better to be putting herbs into my body than injecting pharmaceutical-grade antibiotics into my veins everyday. 

Over my 4-month course of IV Bartonella treatment, I experienced a lot of ups and downs. Recently, I found myself with more energy and less brain fog than usual, which was amazing! It came right around the holidays, too, which was convenient. Then, a couple of weeks ago, the crushing fatigue, with which I am so intimately familiar, seemed to return. It was disappointing. I became scared that the progress I thought I’d made was lost. I wondered what I’d done wrong to make the fatigue and, with it, the brain fog return. Luckily, I have a supportive community of friends with Lyme disease who were quick to remind me that:
1) This is normal. Scary? Yes. But normal.
2) It will pass!
3) I am not alone in my experience or my fear.

My friends’ reassurances calmed me enough that I was able to shut off the line of thinking that involved blaming myself for my setback. Self-blame is one of the first reactions I have when something goes wrong. It’s easy to see how blaming myself might have become a habit; for so many years I was told by doctors that either there was nothing wrong with me or I was crazy/depressed/needed to see my psychiatrist ASAP. Their less-than-encouraging reactions placed the blame of my illness (or ‘illness’) squarely on my shoulders, and my shoulders alone. It’s taken time to learn that, when it comes to this illness (or, really, most illnesses), the concept of “blame” is useless. Sure, it’s part of the process of coming to acceptance of unpleasant circumstances, but it’s something to move through. Getting stuck in blame, whether is it self-blame or placing blaming elsewhere, is toxic. Until I let go of blame, I can’t move forward toward health. It’s not an all or nothing proposition though. For me, it’s something I go back to, but each time I do it has less of a hold on me. 

I hope that, if you’re stuck in a rut of blame or anything else, you find your way out and are able to move forward to more vibrant health.

Tuesday, December 14, 2010

Status Update and Letting Go

I’m struggling.  This is nothing new.  It’s a daily thing, though some days and weeks are worse than others.  Lately my heart’s been cause for concern.

Several weeks ago, we added an oral antibiotic to my current regimen of two IV antibiotics.  Over the course of the two weeks I was on the oral antibiotic, my body became toxic; I was killing off more of the infections, but my body was unable to keep up with the detoxification process.  Essentially, I was killing off more than I could dispose of, and this caused a flare in current symptoms, as well as the emergence of new symptoms.  A week-long break from all antibiotics helped; the new symptoms went away (for the most part) and the other symptoms toned down in severity.  I’m no longer taking the oral antibiotic, though I am back on my IV antibiotics. 

Of the new symptoms that emerged during that period of toxic overload, palpitations and increased sensitivity to the stimulant medication I take for brain fog and fatigue were the worst.  Though the crazy palpitations have subsided, I’m still really, really sensitive to the stimulant, despite lowering my dose.  I’ve been monitoring my blood pressure, only to find that it reaches the prehypertensive range when I take my stimulant.  Lowering the dosage hasn’t made much of a difference, so I feel my only option is to discontinue it completely.  

I’ve tried to do this countless times before, to no avail.  Without the stimulant, I spend most of my time sleeping.  When I’m not sleeping, I feel unmotivated, unfocused, foggy, depressed, and like I’m missing out on even more of life.  But I fear that I’ll be doing more harm than good if I keep taking the medication, so despite fatigue, amotivation, inability to focus, and worsened mood, I’m taking the plunge: I will discontinue my stimulant medication.  By doing so, I hope to allow my body to heal more quickly and get the rest I apparently need.  In time, I imagine I’ll find I have more natural energy, increased ability to focus, and more motivation.  That’s my hope, anyway.  

For me, this is the ultimate “letting go.”  I’ll have no choice but to listen to my body and respond accordingly.  I’ll be completely at the mercy of this illness, which terrifies me.  All along, I’ve been able to maintain some control over my body and, therefore, my life, by taking this medication that overrides brain fog and other unpleasantness.  It’s been like a security blanket.  Now that the risks undoubtedly outweigh the benefits of holding onto my security blanket, it’s time to let go and accept my reality, in all its unpleasantness. 

Wish me luck.

Saturday, December 11, 2010

Heather’s Lyme Disease is not the IDSA Lyme Disease

On December 8th of this month, the Chicago Tribune ran a story titled, “Chronic Lyme disease: A dubious diagnosis,” which essentially states that chronic Lyme disease is not real and that the Lyme-Literate physicians (LLMDs), who routinely put their professional lives on the line to treat their very ill patients, are criminal in their practice of medicine. The article spouted the Infectious Disease Society of America’s (IDSA) party lines: chronic, late-stage Lyme disease does not exist, people who believe they have chronic Lyme disease are delusional, and the doctors who routinely save their lives are snake oil salesmen/women. 

In my experience, and the experience of so many other chronic Lyme disease sufferers I know, LLMDs are the reason we’re not circling the drain. They’re the doctors who, despite mainstream medicine’s myopic view of this disease, and despite constant vilification from the mainstream medical establishment, routinely risk their licenses in order to help those of us in dire need, who have been written off by countless other doctors as crazy, delusional, depressed, and attention-seeking. 

In an attempt to fight back, chronic Lyme disease sufferers have been posting their stories online to their blogs and Facebook, as well as writing letters to the editor of the Chicago Tribune, in an attempt to educate those who, as of yet, do not understand the breadth of the disease, the multisystemic nature of chronic Lyme, and the deadliness of this illness, which has taken the lives of so many, and which has taken the quality of life of so many more. 

The following is my dear friend’s story, written in painful detail. I have reposted it with the author’s permission.


I’ve never written my Lyme story in full before.  It is long, painful, and difficult to put into words that make sense, as the trauma is still so fresh in every part of my self and cells.  But the beautiful outpouring of the Lyme community in response to the Chicago Tribune article calling our diagnosis dubious and our struggles self-inflicted, has inspired me to try.

My Story

My doctors and I believe I’ve been infected since I was very young, six or seven years old.  I exhibited daily symptoms but learned to live with them, thought them normal; in my child’s mind I concluded that constant nausea, depression, anxiety, and visual disturbances were a ubiquitous experience, part and parcel of being alive, and since no one else was complaining about them I must, indeed, be weak, hypochondriacal, as the doctors to whom my mother brought me insisted. 

I should mention that I wasn’t prone to whining about my health for no reason.  In fact, at age four, I contracted strep throat but never once told my mother my throat hurt.  One day my temperature spiked to 105 degrees and she rushed me to the hospital.  Scarlet fever.  A simple strep infection advanced to a weeks-long illness, because I never once bothered to tell anyone I was in pain.

Throughout childhood my symptoms mounted, but I remained functional, busy, and successful in my endeavors.  By any standard I was not lazy.  I enrolled in honors classes at school and brought home As every semester.  I was a dedicated violinist, practiced at least an hour every day, attended youth orchestra rehearsals and lessons every Saturday.  I took art classes, piano lessons, studied French horn, was involved in extra curricular math clubs, choirs, Girl Scouts, gymnastics, and dance classes.  Eventually it was clear I was over-committed and costing my mother a fortune, so she insisted I pare down.  I chose violin.  In high school my individual practice expanded to three hours daily, and I attended an arts school that required my time there span from 8 am to 4 pm.  I loved every second of it.

Each year my symptoms worsened, symptoms I’d convinced myself (with the help of several doctors) were ‘all in my head,’ but it wasn’t until my senior year of college that they began interfering with my life and functionality.  In fact, I clearly remember one morning earlier in my college career – my sophomore year, perhaps – when I awoke feeling more nauseous than usual, vomited into the trash can on the way out the dorm, and continued walking to class as though nothing had happened. 

Senior year, however,  my body decided to fight back.  Suddenly, for no discernible reason at all, I was unable to sleep.  I’m not talking typical insomnia, don’t mean trouble falling or staying asleep.  I mean for three consecutive weeks I received not one minute of sleep, day or night.  I lay awake and sobbed, begged my body to sleep, drugged it with prescribed Ambien only to hallucinate and swear the drug off for life, tried valerian root and bedtime teas and Benadryl and meditation and hypnosis and relaxation tapes.  Nothing helped.  Complete sleep deprivation is a particular torture unlike any I’d known or imagined previously.  There is a reason prisoners of war are often refused sleep, forced awake for days, weeks on end.  I grew suicidal.  But really, I didn’t want to die.  I wanted to sleep.

Nearly four weeks into the inexorable sleep deprivation daymare of 2002, I trudged to the subway and found myself in a Manhattan emergency room, trembling and cold.  I think I might hurt myself.  Badly.  I can’t sleep, I said, dazed.  They checked me into the hospital psychiatric ward, where I stayed for two weeks.  After some trial and error they found a drug combination that knocked me out for a few hours each night, and I was released.  Everything returned to normal.  Or so I thought.

Two months later, in early July, I woke to searing lower right abdominal pain.  I shot up with a start, clutched my side, tried to breathe.  Each breath threw knives into my ribs.  I staggered to the phone and dialed a nurse line.  ER, right away, I was instructed. Sounds like appendicitis.  I found myself back in that same emergency room, this time biting back tears from pain and informing the registration nurse I thought I had appendicitis. As I sat in the waiting room, the pain crawled to the upper quadrant of my abdomen and intensified at least 10-fold.  By the time I saw a doctor I was sobbing and wailing in pain, which I’d never before done in my life.  The appendicitis test was negative.  After pleading with the nurse for hours, barely able to speak for the pain, she shoved a morphine drip into my arm.  It hardly took the edge off.  They accused me of faking it, but I spiked a fever and puked, so I was reluctantly admitted.

There was no diagnosis.  Probably an ulcer, they shrugged, though I never received a test for H. pylori.  After three days the intolerable, stabbing pain subsided, left a warm throbbing in its wake.  I was given Nexium and sent on my way.

My stomach and digestion never recovered.  I vomited almost monthly, sometimes more often than that, for seemingly no reason at all.  I spent hours in the bathroom.  I couldn’t hold weight; everything I ate made me ill.  I paid it little mind, tried to return to my life.  Finished school, got a degree.  Worked various jobs.  Moved cross country for love.

In 2004, everything, including my body, fell apart.  I could no longer hold full-time, steady work.  I was diagnosed with IBS and anxiety disorder.  My panic grew insurmountable, leaving the house a Herculean task.  Just opening the door to the outside sent a surge of cold fear rushing through me.  The panic flattened me, was roadkill crushing my chest.  I couldn’t breathe.  I couldn’t handle life.  I kept throwing up.  I was dropping weight fast.  My bladder and kidneys stopped working correctly.  I was diagnosed with interstitial cystitis.  I cried all the time.  I thought I was going insane.

At this point, after a lifetime of indoctrination, I remained convinced all my symptoms were caused by panic and depression.  It didn’t occur to me that perhaps my mental and emotional symptoms were manifestations of a biological disease process, that instead of my head making me sick, the illness inside me was affecting me neurologically & psychologically.  I had it backwards, as did every single so-called medical professional I’d seen throughout my life.

Eventually it became clear I could no longer take care of myself.  Getting out of bed was increasingly impossible.  I couldn’t stand long enough to make myself food, and couldn’t eat when I did manage to prepare something.  I began to have trouble walking, was dizzy & weak.  I had to lie down after brushing my teeth.  I was continually terrified, unable to stop sobbing.  I shed pounds like snake skin, inched closer and closer to a weight I hadn’t seen since junior high school.  I forgot to feed my cats.  I forgot to feed myself.  I didn’t know what day it was.  As the days slipped by in a haze, it dawned on me that I was ill.  Seriously ill.  Something was very, very physically wrong with me.  I set out to discover what that something was. 

Doctors hadn’t helped me, so I turned to the internet.  (I couldn’t leave my house for doctor appointments anyway.)  I plugged every single symptom I had into Google, and voila, the first thing that came up was Lyme disease.  I scoffed, almost dismissed it entirely.  How could I have Lyme disease?  I’d never seen a deer tick, never had a rash, only been camping a small handful of times.  Besides, wasn’t Lyme like the flu?  A few antibiotics and you’re fine?  How on earth could Lyme disease do this?  Out of curiosity, I clicked the link.  And then I learned everything that we as Lyme patients know, but the medical establishment, the IDSA, flatly and insistently denies:  how insidious this disease is.  How difficult to detect and treat.  That 50 percent of patients or more never recall a tick bite or rash.  That deer ticks are often as small as the period at the end of this sentence.  How Lyme and coinfections can mimic almost every chronic and neurological disease known to mankind.  How I was sick.  Seriously, legitimately, dangerously sick.

It fit.  I knew it immediately, after reading about two paragraphs describing chronic Lyme.  No question in my mind.  No question in any cell of my body.  After all these years, everything made sense.  I was sick.  I wasn’t weak.  I wasn’t a hypochondriac.  I had a serious neurological illness, a deeply entrenched infection of the brain, CNS, and every bodily organ.  I had Lyme and coinfections.

I was too sick to travel alone from Portland, OR (where I lived at the time) to my family’s residence in Minnesota; my cousin flew out and met me, helped me get myself on the plane.  I didn’t have enough energy or cognitive ability to pack my stuff, so I left my bedroom a disaster, apologized profusely to my landlord and roommates, and my incredibly kind roommate packed everything for me and shipped it to MN.  I had to give away my beloved cats; I could no longer care for them.  When I arrived at the airport in Minneapolis, dazed and dizzy and drained, I could see the concern on my mother’s face.  I looked horrible.  I was down to almost 90 pounds.  My hair was greasy, scraggly, thinning.  My face was ghost white, my eyes glassy and rimmed with black circles.  I fell into her arms.  I thought for sure she would help me, we would figure this out together.  I assumed that with her help, I’d be okay.  I was wrong.

I can’t blame my mother or my paternal grandparents (with whom I stayed) entirely, however.  My family believes in doctors.  They believe in Western medicine.  When doctors said there was nothing physically wrong with me, my mother believed them.  Doctors were god-like.  Gurus.  They had the answers.

I told my family I knew I had Lyme.  Late-stage Lyme.  Chronic.  A severe case.  They didn’t buy it.  I finally annoyed my family doctor enough that she agreed to send my blood to a specialty lab, a lab the Tribune article calls unreliable.  It’s true, their Lyme test, like every Lyme test, isunreliable: false negatives and inconclusive results abound.  However, my test was not inconclusive or negative.  My test was positive, so positive it met the stringent CDC criteria for a Lyme disease case.  For some reason, however, my case was never reported.

My family doctor called me, surprised, and said ‘well, that’s strange, your Lyme test came back positive.’  She offered to prescribe 30 days of doxycycline, the standard treatment dictated by the IDSA.  I declined.

Let me explain why:  a couple weeks after I’d returned to Minnesota, I grew suddenly sicker.  It didn’t seem possible that I could fall more ill than I already was, but I did.  One night I was reading a novel by Toni Morrison before sleep; the next morning I picked up the same book and couldn’t read it, couldn’t decipher the language.  I lost the ability to read.  I could almost read the words, say them in my head, but I hadn’t the first clue what they meant.  I started crying uncontrollably.  I was terrified.  Terrified of what was happening in my body and brain, terrified because my family didn’t believe me and I didn’t know how I was going to get the help I needed.  How was I going to access treatment?  When I lost the ability to read, I also lost the ability to write.  I couldn’t think or carry on a coherent conversation.  My brain felt stuffed to the brim with hardening cement, 24/7, every moment of every day; my body felt filled with poison.  Sleep was the only respite.  I was too dizzy and weak to lift myself from bed.  I crawled to the bathroom.  I got lost in my grandparents’ home, the same home they’d lived in since before I was born.  I remember one morning in particular: I limped to the bathroom across the hall, clutching walls as I went to keep myself from falling.  When I stepped into the shower, I couldn’t figure out how to turn the water on.  I had no idea what to do with the knob on the shower wall.  It looked like something I’d never seen before, something strange and foreign and unnamable.  I pressed it.  I hit it.  I collapsed onto the shower floor and wept.

In addition to extreme cognitive impairment, my symptoms in late 2004 included:  constant severe nausea, inability to digest food, diarrhea several times per day, hair loss, weakness in hands & legs (difficulty walking – I fell constantly – and trouble holding things in my hands, like silverware), numbness and tingling in extremities, continuous panic and crying, tendon pain, unrelenting headaches, extreme difficulty breathing, polyuria (my kidneys couldn’t hold water and I peed out way more than I took in), insomnia, muscle jerking and twitching, petit mal seizures, trembling, shaking, dizziness, central nervous system/sensory overload (I couldn’t tolerate lights or noises or smells or crowds, couldn’t even tolerate the sound of someone talking to me), inability to lift my head from my pillow for more than a minute.  The list is endless, really.  From the research I’d done before I lost the ability to read and comprehend, I knew I needed a Lyme-literate doctor.  I knew I needed years of treatment, that my case leaned heavily toward the Most Severe end of the spectrum.  The short course of doxycycline my clueless family doctor prescribed was a joke, wouldn’t come close.

I pleaded with my family.  I offered my positive Lyme test as proof.  They parroted the doctors: “it was probably a false positive” and “Lyme can’t do this.”  Then their ultimate conclusion, supported by every doctor to whom they took me: “yes, you’re very sick.  But it’s all in your head.  You’re making yourself sick with your mind.”

I knew they were wrong.  I knew I was ill, deathly ill, maybe, but there was no convincing them.  In my delirious stupor I somehow made an appointment with a Lyme-literate doctor in Missouri, the closest LLMD to Minnesota at the time.  How I was going to make it to Missouri when I couldn’t even reach the front door was a mystery to me, but I was determined.  I enlisted my best friend for help.  She planned to fly from Boston to Minneapolis and essentially carry me all the way to Missouri.  That trip never materialized. 

One morning, while I was attempting to lift myself from bed, my grandparents entered my room and said calmly, “come on, get up.  We’re going to the hospital.”  I thought they were referring to my episode the previous night, when I woke up unable to draw a breath.  I sat bolt upright in bed, gasped, tried to breathe, couldn’t, could only draw the shallowest forced inhales, like I was breathing through a fancy-drink curlicue straw.  I hobbled to my grandparents’ room and begged them to take me to the ER.  They refused, said I was just panicking.  I crawled back to bed, and after an hour and a half or so of this, drenched in sweat, gasping for air, my breathing finally returned to me and I fell asleep.

But no, they weren’t referring to my breathing episode.  Half an hour later, five or ten burly male EMTs rushed into the house, grabbed me, strapped me to a gurney, and wheeled me outside into a waiting ambulance.  I screamed and cried and begged them to let me go.  I begged them for water.  They refused. 

By the time we arrived at the hospital, I was calmer.  I thought, okay, no problem, I’ll just explain that I’m sick and not suicidal, not crazy.  I look sick.  I’m 85 pounds for godsake.  They’ll have to believe me.  My appointment with the Missouri LLMD was in a mere two days.  I couldn’t be held in a psych ward, I had to go to Missouri.  I had to save my own life.

They admitted me, of course, but still I remained as calm as possible.  I’ll talk to the psychiatrist in the morning.  This is all a misunderstanding and they’ll let me go.

Suffice to say things didn’t turn out as planned.  On forced admittance into the hospital psych ward, they confiscated all the herbs I was taking in attempt to start treating myself for the infections that were ravaging my body and brain.  The psychiatrist didn’t believe a word that left my mouth.  She, like the Tribune article, didn’t ‘believe’ in chronic Lyme.  She didn’t care about my positive Lyme test.  She didn’t care about my upcoming doctor appointment.  Instead, she drugged me on dangerous antipsychotics (a drug they only give treatment-resistant schizophrenics), diagnosed me somatically delusional, and had the court commit me to six months of psychiatric imprisonment.

I was terrified.  I had no idea how I’d get out of the hospital alive.  Every symptom of my illness the psychiatrist and nurses charted as evidence of my ‘delusion,’ of my supposed insanity.  The fact that I could only lift myself from bed to force-feed a bit of food into my mouth was evidence I was ‘depressed’ and ‘noncompliant, not evidence of my dizziness, that being upright made my head spin, made me run to the bathroom and dry heave.  My weight (85 pounds and dropping) was ‘evidence’ of past disordered eating, of anorexia.  No concern was given to my intractable nausea or the fact that I physically couldn’t keep any food inside my body. 

Those months are blurry in my memory.  I remember the court hearing.  How they took me in a barricaded police van in pajamas, how I could smell myself, how I’d been too sick to shower for about a week.  How I knew I looked ‘crazy;” the stringy, unkempt hair, the griminess, the lack of concern for my appearance.  (Let me assure you that when you’re sick enough, you don’t, can’t, give one ounce of care to your appearance or hygiene.  This, coming from someone whose usual default is a daily shower.  Every ounce of my energy was being used up simply by existing, by not dying.)  My parents were both there.  My divorced parents who despised each other, who hadn’t been in the same room together since I was about three.  They were there to witness a judge declaring me crazy.  I couldn’t fight.  I had an appointed lawyer, but it was hopeless.  I couldn’t lift my head for the dizziness, the fluorescent lights.  I sat there, cheek resting on the cool, fake wooden table, wondering if I would make it to the outside world alive.

The verdict returned, surprising to no one, least of all me: six months state commitment.  Six months.  How would my body survive six more months without Lyme treatment?  I tried one more time.  I begged my psychiatrist to listen to me.  Her response was to assign an Infectious Disease doctor to my case, a doctor trained by the IDSA.  He came into my room one afternoon, asked if my joints hurt, felt my knees for all of two seconds, and declared that I didn’t have Lyme.  He took my blood and ran an ELISA test, which has a 65 percent false negative rate.  The test, of course, came back negative.  It was official.  I was ‘delusional.’

I recall the cruel clarity of my realization that the only way I would ever be released was if I pretended to act healthy.  If I said not one word about Lyme or being sick (I tried the ‘maybe I have Chronic Fatigue Syndrome’ approach with the psychiatrist to see if she liked that idea better than Lyme, but it was futile; according to her, every single patient with CFS was faking it or crazy, just like me), maybe they would let me go.  This was harder than it sounds, as my symptoms prevented me from sitting upright without the world spinning and distorting around me.  I made myself sit upright anyway.  I forced myself from bed, hobbled with a smile to the TV room, watched TV with fellow patients.  Leaned back and rested my head on the chair because I couldn't hold it up on my own.  The nurses nodded with approval and scribbled in my chart.  I dragged myself to groups and art therapy, often leaving to dry heave in the bathroom; I told the group leaders I just had to pee.  I came back smiling.  I can’t explain the sheer amount of physical and mental energy it took to act even marginally ‘not sick.’  I’m sure in the process I made myself sicker.  But I had no other choice.

My other strategy was prayer.  I am not a religious person.  In the past few years I’ve become my own brand of spiritual, but at the time prayer was entirely foreign to me.  I didn’t know what else to do.  I prayed constantly: in groups, while trying to eat, before sleep, while I couldn’t sleep.  When my blood pressure reached 155/110 and my heart skyrocketed to 160 beats per minute, and they blamed it on anxiety.  I prayed.  I prayed and prayed and prayed.  I pretended.  I learned to smile through excruciating pain, weakness, dizziness, confusion.  I learned to walk while lightly trailing my fingers against walls for balance.  It was hardly noticeable.  I kept praying.

My strategy worked.  Somehow, it worked, and my body didn’t quit on me.  After four and a half months, they transferred me to the ward meant for patients soon to be released.  The first time I met with my new assigned psychiatrist, I hardly looked at him.  He asked for my story, and I shrugged.  He said he needed to hear it from me.  Okay, I replied, but you’re not going to believe me.  I didn’t use the word “Lyme.”  I simply said I’m sick, really physically sick, but I’ve been diagnosed delusional and no one believes I have a physical illness.  He looked at me in a way no one had looked at me in months.  I didn’t understand his expression, until I realized it signified listening.  I believe you, he said quietly.  What? Was he kidding?  I stared at him in utter shock.  I mean, it’s obvious.  You look sick.  You don’t sound at all like someone who’s delusional.  I’ve seen delusional, and I’ve seen seriously, physically ill.  You’re the latter.  I was flabbergasted.  I don’t think I said a word in response.  He apologized on behalf of his profession.  I’ll have you out by the end of the week, he promised.  And he did.

I got back on Lyme treatment immediately, found a doctor closer to home.  I got better.  I came back from the dead, essentially, lived two good years of near-remission.  But these pathogens are stealthy.  Like many chronic Lyme patients, I was infected not only with Borrelia, the bacteria that causes Lyme, but also myriad coinfections, viruses, parasites.  They came back out to play when I started neglecting my self-care in 2007.  Since then I’ve been on and off  Lyme treatment, depending on my functionality and financial resources.  Treatment has kept me from declining back to the near-catatonic state of late 2004 and early 2005.  Within the last year, since I’ve been in steady, uninterrupted treatment again, I’ve seen improvement.  I’m still sick, but my body has been fighting these illnesses for decades.  It’s a miracle I’m alive at all.  I have enormous hope for future wellness, for leaving illness firmly behind in my past.

I’m only alive thanks to some divine miracle and the treatment of brave doctors and practitioners who recognize my pain, who treat me as a whole person, not a series of numbers on lab paper.  I can write this story for you to read.  I can edit it, read it myself.  I can take care of myself, feed my cats.  I know where I am.  I know my name.  I can eat.  I weigh 115 pounds now, which at 5’ 3’’ is considered ‘normal.’  My body still struggles daily, but I thank it, and the courageous doctors who’ve cared for me since 2007, for every breath.

Dear writers of the Tribune article:

Your shortsighted, fact-devoid opinion is the reason my family didn’t believe I was sick when I was clearly dying right in front of their eyes.  True, they made a horrible mistake, but that mistake rooted and grew in you.  You are its seed, you give it water and life.  Your closed minds and those of the IDSA are why I have a persistent and unruly case of PTSD from what I endured at my very sickest, when I needed help, support, love, and critical medical care the most.

You call my diagnosis dubious.  You say I’m not really sick, that my aches and pains are commonplace.  I don’t know any healthy person who experiences seizures, gets intractably dizzy from being upright, can’t regulate their blood pressure or pulse, whose hair falls out in clumps.  I certainly don’t know any healthy person who wakes up one day and discovers she’s lost the ability to read.  This isn’t a headache or a sore knee.  It’s an insidious, multisystemic, neurological soup of infections.  it’s an immune system at breaking point.  Lyme disease is a misnomer.  I have Lyme, yes.  But Lyme itself is only one pathogenic organism in a huge vat of infections that brought me, literally, to my knees. 

Lyme and its cohorts avoid oxygenated places.  That is why they hide in the joints, tissues, CNS, and brain, why blood tests often fail to pick up their presence.  These bacteria are intelligent, capable of evading the host immune system and onslaughts of antibiotics.  Tell me, in all honesty, how the idea that a month of low-dose doxycycline can eradicate multiple infections which have spread and entrenched themselves throughout every organ & crevice of the body, makes any logical sense.  Acne patients are routinely prescribed antibiotics for years on end, yet a potentially fatal neurological infection is worthy of only 30 days of treatment?  Use your brains.  Open them.  Listen.  Pry apart the clutch of your hearts.  People are sick, refused treatment, dismissed as ‘crazy,’ left to die. Doctors who wish to help us risk their licenses by upholding the Hippocratic oath.  Something is terribly wrong here, and instead of blaming those who are sick and fighting with every ounce of their waning strength to survive, how about employing a wider lens?  There is a story in this.  You haven’t told it.

Saturday, November 20, 2010

How to measure progress

How does one measure progress during the treatment of Lyme Disease and associated tick-borne illnesses?

Good question, but not easy to answer.

What I mean is, it’s not an easy thing to do because progress can be so subtle, to the point where you don’t even realize you’ve made progress until you really sit down and think about how you felt 6 months ago compared to how you feel today. At least, that’s my experience.

For me, it’s a lot easier to quantify my progress when it comes to the obviously physical  manifestations of the disease(s), such as pain, dizziness, nausea, ability to tolerate and integrate external sensory stimuli, ability to drive, ability to go out into the world by myself without fear of falling down or becoming too confused/overwhelmed/SICK to negotiate my way solo.

I can definitively say that, since beginning treatment over a year ago, my pain has lessened, as has the nausea, dizziness, and even my cognitive symptoms. I still can’t drive, but I have less trouble expressing myself orally, less trouble with verbal comprehension, less trouble simply thinking. That’s not to say these problems have vanished, but they have lessened in severity and duration.

I find what is most difficult for me to gauge is the progress with symptoms that manifest psychiatrically. I can ask myself, “How do I feel today?” The answer may be: I FEEL HORRIBLE; my anxiety is through the roof, I have no motivation, and I wouldn’t mind going to sleep and never waking up.

I think “horrible” is a pretty apt descriptor for such a state of mind/feeling. But if I step back and consider the anxiety I experience now as compared to the anxiety I experienced, say, 6 or so months ago, there’s no comparison. Six or 8 months ago, it was all-consuming. I dealt with severe anxiety practically every moment of every day. A lot of the nausea I felt was undoubtedly due, in part, to the intense anxiety I experienced. So, while I may say that today I feel “horrible,” I mean it, but today’s “horrible” was last year’s status quo, which definitely signifies progress.

As for feeling as though I wouldn’t mind going to sleep and never waking up, well, I don’t truly mean it -- though there was a time when I did. When this thought pops up now, I recognize it for what it is: exhaustion, frustration, and usually a result of die-off. And so I acknowledge it, but don’t let it push me toward acting out with self-destructive behavior.

Sometimes I feel as though I’ve lost some of the progress I’d thought I made, which is upsetting, but all part of the process of healing. I have trouble remembering that the path to health is not a straight line, but an upward spiral; each revolution uncovers a new layer of health. Though the improvements may be subtle, they do exist. The key in maintaining a good perspective is in remembering that they do indeed exist.

Saturday, October 16, 2010

I am not Alice falling down the rabbit hole; I am the rabbit hole.

Today, I feel closer to the person I am than I’ve felt in a long time.  I’m always surprised when confronted with evidence of myself.  Surprised to realize I’m still here, have been here all along, beneath layers of die-off, brain infection, exhaustion, confusion . . . .

It’s so easy to lose myself amidst the appurtenances of illness.  Fear clouds everything, fills me up till I can’t fathom life on solid ground.

I can only speak from the point of view of someone dealing with Lyme Disease & co-infections; I don’t know what day-to-day life is like for people dealing with other chronic illnesses.  So, for me, the hardest part of dealing with illness is the loss of self that accompanies it.  Psychologically speaking, the first several months of treatment weren’t so bad because I had just finished my grad program and could still remember what it felt like to be part of the human race.  My achievements were still fresh in my mind, and I was proud of myself.  On good days, I went out and saw Broadway and off-Broadway shows, often by myself.  And I really enjoyed the time spent walking around the city alone.  But as the months passed and I became sicker, a sense of isolation began to sink in.  I could no longer trust my body to get me to and from the city by myself, so I didn’t go out much.  Severe anxiety kept me huddled in bed most days.  My life of the previous two years became a distant memory.

It’s been over a year since I started treatment, and in that time I seem to have lost myself.  No, not entirely, because I do have days like today, however infrequent, that remind me I’m still here.  But most of the time, I feel so foreign, and I think that’s where Lyme & co., in particular, come in.  Depersonalization and derealization are both symptoms of Lyme Disease, and they’ve been part of my life for a very long time, worsening in response to die-off reactions from treatment.  In and of themselves, these symptoms cause the very sense of losing oneself (and one’s mind) with which I continually struggle.  Add to the equation isolation from the world/ loss of context of my place in the world, and the feeling I have of losing myself makes perfect sense.

That’s why days like today are so important for me to hold onto.  They give me the faith I need to keep fighting, because there really is something worth fighting for: me.

Tuesday, September 28, 2010

Famous Last Words/ My Rifampin Die-Off Reaction

I spoke too soon: yesterday, Rifampin kicked my ass.

It's hard for me to describe the experience of a die-off reaction, but I'll try.
Sometimes it feels like the flu, with aches and pains and a feverish feeling (usually because I have a fever).
Sometimes, like yesterday, it feels like . . . I'm toxic: My body is a vat of biohazardous waste. And I can't drink enough water or choke down enough chlorella to remove the toxins fast enough.

The feeling of toxicity is accurate. According to this page, "The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms." 

Not everyone experiences a die-off reaction, but some people experience very harsh die-off reactions that can be dangerous, especially if there is impairment to the organs/organ systems responsible for the elimination of toxins: the liver, the lymphatic system, the kidneys, the colon. 

I seem to fall somewhere in the middle; my die-off reactions don't last for weeks at a time, and have never, to my knowledge, been dangerous. When I feel especially toxic, I drink a ton of water, lemon water, detox teas, and apple cider vinegar (ACV). I take ACV and epsom salt baths. I eat handfulls of chlorella and other binders, like activated charcoal. One of the ways I can tell my body is overloaded with toxins is an increase in my chemical sensitivities. For example, I can be in my bedroom with the door closed and detect that my mother, behind the closed door of her bedroom, has sprayed a drop of perfume on her wrist. And that drop of perfume makes me hide my head under the covers so I can breathe more easily. It's incidents like that which make me realize I've been slacking in keeping up with regular detoxification. 

For times when I'm very chemically sensitive but have to be out in public or around people who wear synthetic fragrances, I have a mask. It's not exactly fashionable, but it works. I carry it everywhere with me, just in case.